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Sunday, December 30, 2007 9:11 PM CST

We had a nice time at the Gram and Me party at Three Village Inn. Zachary, Alex and Andrew went with my mom and Fritz, and me and Liz, and Vicky (who my mom works with) joined them too. The lunch was nice, the clown was great, and the carrolers were too. The only bad thing was that Alex was afraid of Frosty the Snowman. He settled down and watched the show once Frosty left. Anyway, it was a nice day.

Today we went to Jessica's birthday party. It was adorable and the kids had lots of fun. It is always good to get around our friends for a bit. Tomrrow is New Year's Eve, and Neil has actually agreed to go out to our friend's house. I remember last year at this time, Kendall had just finished his MIBG treatment, and we were just barely cleared for contact with others, but his levels were low enough to be allowed to go to the party. I have a couple of short video clips from this and I'll see if I can get them posted tomorrow. Kendall loved parties and loved to be around his friends. I am grateful that I sometimes took the chance and let him go when a party was on. The doctors discourage you from letting your cancer child around other children, especially if the treatment is for a defined period. But with the kind of cancer Kendall had, they often were a bit more lax... because they know that time may be short for these kids and they want them to have as much of a life as possible.

***********************

I found this essay on another website and I really liked it:

A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous "yes."

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand. The students laughed.

"Now," said the professor, as the laughter subsided, "I want you to recognize that this jar represents your life.

The golf balls are the important things-your God, family, your children, your health, your friends and your favorite passions-things that if everything else was lost and only they remained, your life would still be full.

The pebbles are the other things that matter like your job, your house, and your car.

The sand is everything else-the small stuff.

"If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal."

Take care of the golf balls first, the things that really matter. Set your priorities. The rest is just sand."

One of the students raised her hand and inquired what the coffee represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend."

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I wanted to take a minute to thank all those who donated to Kendall's Giving tree at Lunch for Life. I didn't email or mention the drive this year, because I plan on doing another fundraiser in March and I didn't want to be asking for money again so soon. But some of you must have remembered from previous years, or else maybe the L4L people sent a reminder, and generous donations were made. This organization raises money specifically for neuroblastoma, and they have been doing some great work. There is some new and exciting research on the horizon, and maybe I will live to see the day that the horrible monster that took my precious Kendall from me is gone forever. Although I will always be sorry that the cure came too late for Kendall, I will never give up trying to help find one so that others do not have to live with the horror of childhood cancer. No child deserves to go through what our children endure, and no parent should have to live though this. So I am still very grateful for all contributions. There are a lot of organizations that made a difference to us, and I will promote their fundraisers as they come up. But I do try to spread it out a little.

As for the March fundraiser, I am still planning on shaving my head. Yes, that is right, now that I have this cute new hairstyle, I plan on shaving it all off and starting over again. Really, the change will be good for me. You can see my St. Baldrick's website by clicking the link (hopefully!). Or you can just go to www.stbaldricks.org and look me up by name. My website is listed as Kendall's Mom. I am actualy on there twice, once with my name under a "virtual event" and once as Kendall's Mom with a picture of me and Kendall taken a few days before he died. Kendall is also listed now as an Honored Child, with photo of him in the ball pit at Sports Plus. Again, I am so glad I let hom go there sometimes. There are so many things I am going to come across in life that Kendall never got a chance to do... so I am very grateful for all the memories we do have. Particularly for those of him getting to do fun "normal" stuff.

I would also like to thank Cindy again for all she has done and is doing. She is organizing the St. Baldrick's event, and will be shaving her head with me... for no other reason than because she wants to raise money for children with cancer. The event website should be at this link: St. Baldrick's. Or just go to their main site at www.stbaldricks.org and go to Events, and look up Deer Park, NY. It is at Spectacular East Side Parties... the same place where the fundraiser for Alexa was held. It will be a fun, family-oriented event... so bring the kids. I'll have more info as the time gets closer.

And, before you ask, No... I have no told my boss yet! I decided I wanted to get through the holidays first. I'll tell him before we start hanging up the flyers though.

Thank you again to all who keep following this site. Your emails and guestbook entries mean a lot to me. I know I don't reply often, but I do read them all, and I save them in a file. Please keep my the children with cancer in your prayers. I will be doing another list and update on the status of some of the children I follow soon. I also have another poem (or essay), that I'll post at that point, that really outlines the kinds of things these children and their families go through. It is a difficult read so I'll give plenty of notice and put it way at the bottom of a post, this way those of you who are more sensitive can skip over it or at least have your therapists ready on speed dial before reading.

Seriously, though, I wanted to wish everyone a Happy New Year. I was hoping 2007 would be a great year for us, but instead it will always be remembered as the horrible year we lost Kendall. About the only good thing I can think of right now, is that when you have been down as low as we have, there is no other way to go but up. So here's to hoping that 2008 is a year of healing and happiness and peace.

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"New Year's Day… now is the accepted time to make your regular annual good resolutions. Next week you can begin paving hell with them as usual."
~Mark Twain


"Glory to God in highest heaven,
Who unto man His Son hath given;
While angels sing with tender mirth,
A glad new year to all the earth."
~Martin Luther

Thursday, December 27, 2007 6:45 PM CST

My mood improved somewhat later on Christmas. After a very depressing morning, we went out to get some brunch at a local dinner. Around that time the power steering on my car decided to go, so it was a real challenge to get there. On the bright side, the effort to steer the car and my annoyance at the service station for not picking up on the problem when I had it in the shop just a few days before, distracted me from my pity party and we actually managed to have a fairly decent meal.

After we got home, I took Zachary to the park to try out his new skateboard (photo above!). Neil stayed home and fixed dinner for us.... including a huge bowl of collard greens following a favorite family recipe (Thank you cousin Janet!). There weren't any other kids at the park, except a little girl and her mom who were doing their own thing, but Zach had fun practicing. He actually managed to get the hang of it fairly well I think.... though it will take a while to develop the balance and steering. He played in the playground for a bit too, then he spent some time rolling down the big hill, but it wasn't as much fun without Kendall. My mom called to tell me that the kids were outside by her house, so I took him there for a bit. Zachary spent about an hour playing with some of the children in her developement and their parents. I wish I could tell these people how grateful I am that they so readily include Zachary in their games... even though I didn't have the energy (again) to come out and play with them. I went to the cemetary after that, though it was pretty late. It was almost dark really. I was a bit upset to see that the beautiful evergreen spray I had put there was destroyed. Someone took the plastic cone that holds it, and left just the styrofoam with the branches stuck in and the ribbons. The little gold angel that was attached was also gone. I am not sure if it was just something that got mangled in the cemetary's equipment and they just tried to put it back as best they could, or if someone intentionally messed it up. Either way it was a bit upsetting. I'll try to get out there to fix it tomorrow. It was way too dark and too late to do anything at the time.

Yesterday we went to visit Pop in the nursing home. His daughter met us there, and we had a nice visit with him. He really was happier than he looked in the above photos. Actually, it was good to see him looking so well. Poor Pop suffers from Alzheimer's and Parkinson's disease. He is also blind, and his hearing is poor. It is hard to see such an intelligent, active, and strong man deteriorate like this. He is 96 years old now. When we were younger, he used to teach us to swim and golf, and fish. He never seemed to tire. He played tennis and golf, and was one of the most intelligent people I have ever known. It is so hard to see him like this. He doesn't really remember us any more, though I'm sure if we got up to see him more regularly he would. But he remembers lots of things from his youth. With a little prompting he sang a few of his old boy scout songs with us (he was an Eagle Scout). Zachary loves those songs. Pop's favorite was apparently Dunderbeck. It is a silly song about a man who grinds up small pesty animals into sausages. Pop was smiling as he sang parts of that song over and over, clearly remembering happier days. It reminded me of happier days too.

Anyway, it was a good visit, and I'll try to get up there again soon. It was also good seeing his daughter and her son-in-law, and we had a nice dinner with them. (Thanks for the yummy lasagna and meatballs!). The drive back was a bit scary due to the rain, but we made it in pretty good time. Today I went to the gym and didn't do much else. I'm still feeling a bit down, but my mood is slowly climbing back up. I'm trying hard not to get back into bad eating habits, but with the leftovers from a great turkey dinner in my fridge.... it is awfully hard!

Hopefully next year will be better. Peace to you all.

Tuesday, December 25, 2007 12:44 AM CST

I know everyone is waiting to hear how we "made it through" the holiday, and made the best of it, but the truth is, you don't really want to know what my Christmas is like. There are those who already know, and my heart is with them today as well. I don't even want to discuss it.

We had a nice time at the Morgan Center Christmas party last week. Many thanks to Nancy and Rod Zuch, and the rest of the Morgan Center team for putting together such a wonderful party. Also to the owners and staff at Southward Ho Country Club who once again agreed to host the event in style. The Abramsons are wonderful caring people, and have given a lot to these children over the years. Zachary had a ball catching up with old friends, and dancing to the music. You can see him with his sword balloon above. As you can see, those ninjutsu classes have paid off, and he is weilding that balloon in style! Nicholas had a great time too (thank you Nancy and Rod!) though he was a bit suspicious of Santa. Zachary loved his scooter, and couldn't wait to try it out. We had to talk him out of opening it right there on the dance floor. A little practice and he will be zipping around on it in no time.

Over the weekend we also celebrated Christmas with our friends, and had a great time at Tom and Michele's. It was wonderful to celebrate their new little son's first Christmas with them, and the rest of our friends. Zachary had been looking forward to it all day. I worked on Christmas Eve in the morning, and Neil dropped Zach off to play with his cousins at my mom's. We all met up there later, and had a beautiful dinner our family and friends. But it was definitely an empty feeling for me regardless. No matter what I did, I just could not get into the spirit of the holiday. I had planned on going to the candlelight service when we left, but we were too tired. So I decided we would go this morning instead. But I just couldn't get it together today. I really wanted to be brave and strong for Zachary, but the truth is I failed miserably. He deserves better. Maybe next year will be better. I don't know.

I don't want to sit here and just cry and moan about how sad everything is. The truth is, we are very lucky and have many things to be thankful for. But right now I just miss Kendall so much I can't think of or see anything else. I really didn't think I would be this bad. I really thought I could just cruise through the day and hold my emotions in check.... but I guess that I can't even do that...not even for Zachary's sake.

Sorry everyone, I'll try to update later when maybe I am more together. In the meantime, I updated the photos last night. The top one was December of 2003, at Jessica's first birthday party. Kendall was about 18 months and just adorable and full of life. Five months later he would be diagnosed with cancer. The second photo is one year later, on Christmas of 2004. Kendall was just out of his second stem cell transplant (these were both his own cells that were transplanted). We expected to be in the hospital for at least two weeks after transplant day... with three being more likely. We were released on day nine, and he only needed one more transfusion after that. He engrafted and recovered so quickly, everyone was amazed. I really though that was the end of it all. He was NED and feeling great, and just got better and stronger afterwards. Then he relapsed just a bit over a year later...five months after stopping the accutane treatment. Even then, he still was so full of life and love. I still don't believe this has really happened to us. I will never understand why.

Sunday, December 16, 2007 11:40 PM CST

Well, my attempts to get our family into the holiday spirit have been somewhat successful, though as Zachary says, "It just isn't the same without Kendall". I think that just about sums things up here. Zachary seems to be expressing his feelings well, and is adjusting as well as can be expected, though it is hard for us all. I thought it was great that when I asked Zachary what his favorite thing about Christmas was, he said it was getting to spend the day with his cousins and Uncle Nick. So I asked him what if there were no presents, but you just got to spend the day with your cousins, and he said that was OK with him (I think he will stil like to have his presents though!). I'm really proud of Zachary and how he has managed to see what is most important about the holidays.

Today, I did the Advent reading and candle lighting at my church. I thought it would be something that Zachary would like (he loves candles!), but for some reason, at the last minute he refused to go in with me and insisted on going into Sunday School instead. I gave up after a bit of gentle nudging, and let him go with his class. Later, we returned to church to help decorate for next week, though I don't think we were much help! Still, I thought it would be good for Zachary to be around people who are enjoying the holiday and doing something positive. I feel better around other people anyway. My natural inclination to make the best of things, and to have a positive attitude comes out then. It is when I am alone that it is tough. Then it is just me and my own thoughts. After the decorating, we went to Ruby Tuesday's for lunch. The three of us haven't been out together in a long time. Ruby Tuesday's was a favorite of ours when Kendall was around. It's close by, and they have that great curbside pickup for days when he couldn't eat out. But he loved to go and eat in the restaurant when he was able. As we were leaving, I was just overwhelmed by a wave of grief. We were talking about decorating our tree, and it just occured to me how much he loved the holidays, and I was so sad that he didn't get a real tree last year. We just didn't have the time or money. He ended up going to CHOP for his MIBG treatment the day after Christmas, and we only returned home on New Year's Eve.

However, just when I was feeling most down and low, Kendall managed to make his presence felt. I went downstairs to pull the old artificial tree out of the box, and to make sure that none of our ornaments were still stuck on it. It is in sorry shape, so we plan on getting rid of it. I didn't find any ornaments, but out of the tree when I shook it fell a token from Chuck E. Cheese! When I saw it, I just knew Kendall put it there. He had a habit of saving little things like that, and storing them in unusual places. It wouldn't surprise me in the least that he would think the Christmas tree was a good place to hide tokens. We went there right before we took the tree down for the season in the beginning of January this year. I have the picture saved on my cell phone as wallpaper,and I will make sure to post it soon. It shows Kendall playing his favorite game, X-men, with Zachary by his side. In many of the photos taken at Stony Brook before he died, you see him wearing black X-men scrubs that I got at the college store there.

A second sign came from yet another unexpected place, and I believe this one was from my father. I had been thinking of my dad a lot too lately as I remembered some of the holiday traditions and happenings from years ago. My father died suddenly just after the boys' first birthday. I don't have a whole lot of special things that I associate with him to remember him by, just a handful of pictures and some toys he brought for the boys. But as I was looking for our ornaments, I came across several boxes and bags full of Annalee dolls. These are soft, cute animal figures posed in traditional holiday clothing. My dad and his wife just loved those things, and their house was full of them. It really wasn't my kind of thing, but my dad decided one year that he would buy me some each year and I would collect them. Each year I got a couple more: a bird of some sort, some mice, reindeer, a mouse dressed as santa. I haven't put them up the last few years, because we really didn't have a decent place to put them. Now I have some shelves, so I unpacked them from their boxes. The very last one made me gasp. I have no recollection of getting it, but I am sure it was one of the ones my dad gave me (no one else ever gave me Annalee dolls). This one was a frog. But that wasn't the surprizing part. The frog, was dressed like an angel. It has a silver halo, and beautiful wings. None of the other dolls have any religious overtones, unless you want to count the little mouse in the Santa hat pulling a sleigh. Only the frog. I wasn't even going to put these things out. It was just a whim that made me look for the boxes. Thank you Daddy!

Anyway, I felt a lot better after that, and the tree looks pretty nice overall. We just have a few more things to do to get ready for the holiday. So I think we did good. I actually worked on the thank you cards from Kendall's funeral again, and I am almost done.... however I am running out of cards. I'll have to either have some more made up, or will have to buy some plain ones. I'll look into tomorrow. I am not sending them until after Christmas anyway. It just seems too sad to do that.

Sunday, December 9, 2007 3:37 PM CST

Yesterday I went to the wake of a beautiful 9-year-old boy named Anthony Petrovic. He died from a type of brain cancer. His mom worked with me at the hospital, in the same department. It is just so heartbreaking. This is another beautiful family devastated by cancer. At the wake, they displayed some of the cards and artwork that the children made for the family. Hundreds of cards and pictures and a quilt and banners from children he knew at school or boy scouts. Some of them came also, and you could see the pain on their faces. Please keep this beautiful family in your prayers. Tonight is the National Children’s Memorial Candle Lighting day. You can light a candle for those children who will be spending their holidays in Heaven at 7:00 p.m. Mine will be in memory of Kendall, but I know too many others that I could remember today as well. Please keep the families of those who have recently lost a child in your thoughts and prayers through the holiday season. These will be tough holidays for all of us.

Going to the wake was very hard for me, but probably not for the reasons that most of you think. I went because as a mother I just felt the need to go and give that other mother a hug. I recognize my pain in her and she recognizes it in me. One of my online friends posted this poem that sort of sums it up (no Cindy, this is not THAT poem, you can read this one!).:

A Pair of Shoes

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.


I don’t know the author, but I would be happy to credit her if someone knows who it was.

Anyway, my heart is heavy and getting heavier. I look at that opening photo of Kendall and that beautiful happy smile, and realize it was only a year ago. I try not to think about how long it has been since he died. I try to keep moving forward and just keep putting one foot in front of the other. But my shoes hurt a lot, and some days I really get stalled.

Tonight Zachary and I went to sing Christmas Carols for the beautiful Alexa and her family . She must have been a bit overwhelmed by the large number of people standing in front of her house singing, but it was a way for her supporters to show their love and appreciation of this sweet little girl. It reminded me of when we used to go caroling with my church’s youth group to some of the families in our neighborhood. It was always a good time. I wanted to make sure Zachary had a chance to do some of those things with the church too. Too many times, we let the holidays just become a commercial extravaganza, and the real meaning behind them slips away. So we will be out caroling with our church next week, and Zachary will also be there to help decorate their tree, and he will again be in the Epiphany play this year. He already had his first practice. Hopefully we will have our own tree up by then too. It is going to be difficult to hang those ornaments. I’ve already found several that Kendall made, and each one brought tears. I am not sure if I will put them on the tree or find another way to display them, or maybe I will keep them in a memory box until next year.

Tuesday, December 4, 2007 10:45 PM CST

Today was the first parent-teacher conference, and Zachary got his first report card! Zachary is doing well in school. Mrs. Baldwin commented that she was surprised he seems so well adjusted after all he has been through. She told me he speaks of Kendall often, but he seems to be expressing and processing his feelings well. He is very smart and doing well in school, but his handwriting is still way behind. We didn't really do a lot of writing practice before now, so he just doesn't have the fine motor skills that would be expected. Still, she has seen improvement and wants to wait and give him a bit more time to develop. She gave me some tips to help him improve.

I was hit with another wave of grief upon leaving. I can't help but feel that I should be sitting with Kendall's teacher too.... discussing his stubborness and determination, and how smart he is, and what a great kid he is. I was reminded again of how unfair it is that he didn't get a chance to start kindergarten.

But enough of being depressing. Last night's fundraiser for Alexa was just awesome. Thank you to everyone who came out and supported this sweet little girl and her terrific family. Cindy and Rebecca did a great job with the baskets. My mom won a cool new toy for Nicholas, and I picked up some things I needed. Zachary had fun playing with his friends, and later with little Nicholas. He is getting to be quite a handful! He just loves his cousin Zachary too!

I had a lot more I wanted to say, but I am tired for now. Thank you everyone for all of your love and support!

Sunday, December 2, 2007 10:25 PM CST

These are the directions Cindy emailed me to the fundraiser. Sorry to be so late getting them posted. Zachary and I will be there at 6:00 p.m. tonight.

LIE to exit 51. Take 231 (Deer Park Ave.) South. Make a left on to Lake and a left onto 5th. The place is on the end on the left.


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I recently found out that another beautiful little girl has relapsed after two years free of NB. Janie is 5 years old, and her mom had always been so kind and supportive of us. Please keep this sweet family in your prayers. Also, pray for Katie. She recently had a disease progression scare. Hopefully they will have a new treatment for her soon. Austin seems to be feeling well, but he had some concerning labwork. Emily just started new chemo, and seems to be holding her own. Let us pray it is effective. Brandon also seems to be handlng chemo OK, though the side effects mean he will be missing some fun family events. It is just heartbreaking. He is such a sweet kid. I remember he was one of the kids Kendall was playing with during one of our last stays at the Ronald McDonald house in Philly. It is so heartbreaking for me to hear of these children and their families going through this again.

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Tomorrow night is the fundraiser for the adorable Miss Alexa. It is on Monday, December 3, 2007, from 6:00 pm-9:00 pm at Spectacular Eastside Parties, 10 East 5th Street, Deer Park, NY 11729. The phone number there is 631-254-0959. Cindy put together some amazing raffle baskets, and there will be shopping and food as well. She said people can bring their children if they want, her boys and my Zachary will be there. I am sure it will be a great time. I have been told that the directions on the place's website may not be accurate, so you may want to try looking up the address on Mapquest or calling the place for directions. If I get updated directions, I'll post them tomorrow.

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We were thrilled to welcome our newest little friend Jake into the world on Friday. He is absolutely adorable and I was honored to have a chance to hold and feed him for a bit. Congratulations Tom and Michele, and thank you. Zachary had fun playing with their first son Connor. He is going to be a terrific big brother I am sure. Zach just loved seeing the baby. He has always had an affinity to babies.

Yesterday Zachary got to attend a special Shoot Fighting seminar with Renshi John Busto. He had a great time and got a chance to learn some new skills. He was very excited and couldn't wait to tell me about the arm bars and leg bars he learned! Today was a video game day, as it was bitter cold, and we got our first snow of the season this morning! After Sunday School and church, Zach spent most of the rest of the day playing Spiderman on his Wii. I later took him to my mom's house, because I was worried about the weather in the morning. Neil and I will have to leave extra early, and I didn't want to have to make him get up and out at 6:30 a.m. if it wasn't necessary.

Anyway, time for me to sleep. Thank you to everyone who keeps checking up on us.

Thursday, November 29, 2007 7:09 PM CST

My good friend Cindy has been working dilligently, combing the streets for donations for Alexa's fundraiser. I am always amazed by her enthusiam and drive. She has put together several fantastic baskets of things to be raffled. The fundraiser is on Monday, December 3, 2007, from 6 p.m. – 9 p.m., at Spectacular Eastside Parties
10 East 5th Street, Deer Park, NY. (631) 254-0959 Directions can be found on their website (click on the link, it should take you there.. if not, copy and paste this link: http://www.spectaculareastsideparties.net/mainpage.html)

It is a night of shopping and there will be raffles and food as well. It is sure to be a great time. I will post more details and updates as I get them. Alexa has a very rare form of cancer of the kidney. Her mom was a school teacher, who left work to devote herself to her daughter's care. I hope everyone in the area will come out in support of this lovely family.

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We have been doing OK. We had a quiet weekend and really a quiet week. We are trying to decorate for the holidays and get into the holiday spirit. It isn't easy. But little by little we are doing it.

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I didn't have a chance to share this story, but I think I will now. A few weeks ago I went to Big Lots and Walmart near my house, looking for a new chair for Zachary. They are in the same shopping center. I didn't find what I wanted at Big Lots, but on the way in, I found a five dollar bill in the parking lot. There was no one around who could have dropped it, so I stuffed it into my pocket with a vague thought that I'd give it as an extra donation to church on Sunday. As I was shopping around Walmart, I picked up several things we needed, and my eye was caught by this little wallet with a frog on the front. It was really the kind of thing a young girl would probably have, but the frog was so cute and I have been looking for a smaller change purse, so I tossed it in the cart without much thought. Later, as I thew the bags in the back of my car, I saw that wallet wedged between the bars of the shopping cart. I pulled it out and realized I hadn't paid for it! I rummaged through and double-checked my receipt, and sure enough, it wasn't on there.

I really was in a rush, so I got in my car, and started to drive off, then I just stopped and stared at this little wallet. I just couldn't take it without paying. First of all, that just isn't my nature in general. But in particular, I grabbed this wallet because the little frog reminded me of Kendall. I couldn't bear to have such negative feelings attached to something that reminded me of him. So I ran back in the store and went back to the register to pay for the wallet. As is usual for me, I had no cash when I went out shopping (I put everything on my debit card!). The wallet was only $4.97. I was annoyed at having to charge such a small amount. While I was waiting, I put my hand in my pocket, and felt some crumply paper. That was when I remembered the $5.00 I found earlier! I totally forgot about until that moment, and realized that there was some divine intervention here for sure. I used the five to buy the wallet, but I also made an extra $5.00 donation on Sunday anyway. I just can't help but feel amazed that the money I found was almost the exact same amount as the money I needed.

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"Always do right. This will gratify some people and astonish the rest."

- Mark Twain

Thursday, November 22, 2007 9:41 PM CST

A rare two updates in one day! (see Journal History for the earlier one).

Our day improved somewhat, and I was yet again reminded of all I have to be thankful for. I felt so bad for my poor mom, who was really looking forward to the holiday with all her grandchildren. Instead, she spent the day alone with Fritz, just being sick and miserable. I stopped by later on, and told her we'd have dinner sometime next week. But she wont get to see my brother and his family again before Christmas. It just served to remind us how important our family is, and how much we miss one of them when they can't be there.

Once I pulled myself together, I took Zach to my sister-in-law's parents house, where they diverted after hearing of the illness (my mom had called them while they were still on the road). Liz's parents were off visiting one of their other children, but Liz went out and did some quick emergency shoping, and managed to put together a reasonable Thanksgiving meal on short notice. Zachary enjoyed playing with his cousins for a few hours, and on the way back home he declared it the "Best Thanksgiving Ever". This made me laugh at first, because it wasn't even close to that (last year was the best ever, when I still had both my boys with me). But from Zachary's point of view, any holiday where he gets to play with his cousins is the best. Again, it just reminded me of what is really important on these days. It isn't the turkey, or the pie. It isn't the football games or other sports. It is the family and friends that you share them with, and Zachary reminded me in his own way, that we need to enjoy and celebrate with those who are here with us now. The truth is, I will probably remember this Thanksgiving more vividly than the other ones. I only have vague jumbled memories of most of our family holidays. I can tell you what we "usually" did, but I don't remember too many specifics. The things that stand out were the years when something was different. Like the Christmas when my grandfather fell down the stairs and we spent most of the day in the ER. Or my first Christmas with the boys when we had an "open house" and catered trays of food and snacks for whoever wanted to stop by and see the kids. Or last Thanksgiving with Zachary's heart-felt prayer. Again, a child teaching the adults what is really meaningful and important.

Anyway, we had a great time yesterday. The kids had only a half a day of school, so I took Zach to Ikea and the Broadway Mall. This is a rare treat now that I don't work in that direction, as I don't have much reason to drive out there. But we met Neil for lunch in the Food Court (he works nearby and also had an early day). Zachary had a chance to play in the play area that my mom used to take him and Kendall to on rainy days when Kendall's counts were good enough. It is really beautiful, with a lighthouse theme and very soft play equipment. It was kind of sad seeing Zachary there without Kendall. Zachary feels the loss too sometimes, even though he appears to be happily playing. While we were eating lunch and he was waiting to play, he mentioned several times how much fun Kendall used to have here, and talked about some of the things they do. He almost never has a good time doing anything without bringing it up. Even on this Thanksgiving, after he declared it the best one ever, he then said, that the only thing that would have been better would be if Kendall was here too.

Anyway, Ikea was great because it wasn't very crowded on the day before Thanksgiving (a great day to shop by the way!). There were a couple of kids in "Smaland"... the play area for children. I signed Zachary in, and Neil and I enjoyed a nice hour of shopping. We found him a desk and chair, and even had time for coffee before the pager went off and we had to go back and get him (they limit you to an hour, and give you a restaurant-style pager so they can contact you if your kid needs you or if your time is up). Zachary had a lot of fun in the ballpit, and playing with stuffed animals, and a weird tree thing. Again, it made me sad that Kendall wasn't with him. Ikea was a rare treat for him. We actually used it at first as a potty-training motivator. When we first took him, it was after his initial treatment was over, but before relapse. The boys still needed pull-ups because they were still having a lot of accidents. When we got to the fun-looking play area and were told they would not be allowed in with the pull-ups, they had to be fully trained, the boys were upset. But that motivated them to try harder to let us know when they had to go, and within a couple of months we were back with the boys in their big boy underwear. They had a great time there. My mom would take them sometimes to entertain them when the weather wasn't nice out, as long as Kendall's counts were OK.

I'm glad we let him do as much as we did. A lot of the parents of children with cancer seriously limit their activities, and understandably so. Even when his counts were good, his immune system was compromised and he had no immunity to typical childhood illnesses. But part of me always knew our time was short. The doctors didn't give us the same level of restrictions that they gave some other children with better prognoses. It took me a little time to realize this, but once it sunk in, I really lightened up on him. Especially after relapse. If his ANC was at all above 1000, or at least close and heading upwards, I didn't restrict him at all. I am grateful for this now. We had a lot of great memories in children's museums, malls, the Fun 4 All, sports plus, McDonalds and Chuck E. Cheese, etc. We were extremely lucky when it came to illness with him. He never got chicken pox or shingles (these kids are prone to it), he never had a VRE or C-Diff (two nasty intestinal bugs), he never had any of the vaccinatable illnesses, and he rarely was hospitalized for fever, except the expected ones that occured during transplants and whatnot. He didn't even get that many colds. I can only accredit this to the mercy of God, because I certainly wasn't anywhere near as careful as I should have been. Those memories are really precious to me now.

So Zachary had a fun couple of days, despite the change in plans. I hope everyone out there has a Happy and Healthy Thanksgiving, and keeps in mind all that you have to be thankful for. Next Wednesday I am back to donating platelets. I had a little break due to my vaccinations, and then subsequent cold (can't donate when sick), but hopefully I will be able to go at least twice a month. It takes a little time, but to those who need them, those platelets are one of the most precious gifts you can give. Blood donations are much quicker, so for those who can't manage to spare an hour, maybe you can manage a few minutes for giving blood. During the holidays, the blood supply goes down really low, this is the time to get out and give. Our church is having a blood drive on Tuesday, November 27th. It is at Hope Lutheran Church in Selden, NY: www.hopeluth.com. Thank you for all who participate.

Thursday, November 22, 2007 10:08 AM CST

The memorial service through the Living in Love program at Stony Brook, which took place on Saturday at a church in Stony Brook, was really wonderful. It was more of an informal meeting than service. We were down in the church basement, seated at round tables, and we watched a slide show put together by Brad from Child Life. It was so touching and brought a lot of tears. The photos were all of beautiful, happy, well loved children, who have passed away. Many families wrote beautiful sayings, with the theme being thanksgiving. Mine is above. I choose the photo of Kendall at Clark Park, because he was having such fun and so proud as he made it up the rope ladder. I found out later that day that he had progressed again, and it was the end of our good run on the irinotecan/temodar combo, that had given him such a great quality of life. I got back in touch with a lot of the families from Stony Brook who had lost children, including Michael's family, the first child we got to know on the floor. Michael died three years ago. He was only 16. We met him during his last few months of life, but he reached out to Kendall and we always looked forward to seeing him and his sweet family. His sister Audrey, who is a beautiful teenager now, used to sometimes entertain my boys in the play room or family room. His mom suffered from breast cancer not long after his diagnosis, and it was great to see her looking so healthy and vibrant again. We sat with them during the ceremony. I also found out that another teenager, Valerie, had recently passed away after a long and valiant struggle with leukemia. During one of our first admissions, we got to the hospital late and Kendall was so hungry. He wanted cereal and chocolate milk. One of the CA's asked Valerie if he could have some of hers that was stored in her room (she had been there for a couple of weeks at the time, and there was a lot of food she hadn't eaten). She told us to come and take whatever we wanted, and I just picked up a box of cereal and some milk. She was just such a beautiful girl, and she spoke to Kendall like he was one of her friends. He was immediately taken with her, and he colored a special picture of a snake for her. For some reason, he thought she would like snakes! She gave him a little tiny Blue from Blue's Clues. It is in the photo up above. Kendall loved this little plastic figure and carried it with him everywhere. I found it a couple of months ago when I was cleaning out his backpack from Sunrise Day Camp. He had stowed it in a small side pocket. He just loved those little treasures, like coins, rocks, and toys. You can see a few of them in the picture above. The ninja turtle (in the glass case) was the very same Leonardo that was clutched in his hands when he died. It was the same one that I lost, and found in what can only be call a miracle, a couple of days later. The large medal was the one Nancy had given him from the Morgan Center. The small coin was a token from Chuckie Cheese, that he also carried with him everywhere. I found it in the pockets of the last pants he wore on Easter Sunday. CC was a really special treate for him. He LOVED to go there, but only got to go a few times. I am grateful that he had those few trips though. There is also a little plastic prehistoric lobster in the case. That was "Gary" and it was another one of those little things he just treasured. It was in his jacket pocket. Anyway, I was so sad to see Valerie's mom there. Last time I saw Valerie was in the old clinic, and she was so hopeful for the future. I remember her rather brash and demanding personality, as she went to the telephone to yell at her mom because she was late or something picking her up. But she had a sweet nature too. She loved the little children, and you could tell she really felt for them. She said to me once it broke her heart that some of these kids were so young they didn't even understand that their life was not "normal". I also saw Robert's mom Lisa. Robert died just a few weeks before Kendall relapsed. His was the first child's funeral I had ever been too, and it affected me greatly. But I was glad to get back in touch with her too.

Zachary got his yellow belt last week as well. He was so proud! He is really doing well with the ninjutsu classes. I may start taking them soon as well. I have a one month free pass I could use. I just don't know if I can fit them into my schedule right now. We'll see.

Our Thanksgiving so far has been kind of sad. We were looking forward to going to my mom's and spending the day with my brother and his kids. But my mom got sick this morning. She apparently picked up a virus from little Nicholas who was sick the last couple of days. I'm working out now what to do instead. The truth is I don't feel much like doing anything. We do have a lot to be thankful for, but there is such a great hole in my heart and it is hard to see around it to the other side. I am so very grateful for my family and friends, and especially for Zachary. But I miss Kendall so much it is hard to breath sometimes. Anyway, I will manage to pull it together and try to do something positive shortly, for Zachary's sake.

Friday, November 16, 2007 1:04 PM CST

I thought I'd post our photoessay from our weekend with Douglas, Zachary's class bear. It was a really fun thing to do, though it was such a busy weekend we "bearly" (heehee!) had time to finish it.

Tomorrow is the clothing drive for the family of Ryan Kouril, a 12-year-old boy with cancer. If you have any used clothing, accessories or bedding you would like to get rid of, bring it to the Oxhead school in Centereach, in the rear parking lot between 9-2pm. If it is raining, take it to the front under overhang. The company that is coming to take the clothes will pay the family .13/lb. Neil will be dropping off several large bags from our house and from my mom's. Directions to the school are as follows:

LIE to exit 62, Nicols Road, (Rte 97), north towards Stony Brook. Take 97N to Middle Country Road, (rte 25) and make a left (west). You will pass the Walmart, and soon come to a White Castle. Make a right between the White Castle and 7-11, onto N. Washington Street. This turns into Oxhead road a few blocks up. The school is on your left at 144 Oxhead Road, Centereach, NY 11720.

Also coming up in December is the fundraiser for the adorable Alexa on Monday, December 3rd, in Deer Park (I will post more details as it gets closer).

**********************************

My Weekend with Douglas:
by Zachary Jackson and his Mom

Friday, 10/26/07

I was so excited to take Douglas home to show my family and friends, and what a great weekend for it too! We had lots of fun planned. My first task though, was to find him a Halloween costume. I unpacked his bag, but didn’t really see what I was looking for. So I consulted with my secretary/costume designer (a.k.a, Mom), and she found an old Batman costume. A few minor alterations and we were ready to go! The first place we went was Trick or Treat Street back at Bicycle Path School! It was a lot of fun. The school was all decorated, and people were handing out candy and toys, and we saw a really great magic show. It was only a little scary. I was glad I had Douglas to hold on to! We even got to see Mrs. Baldwin there!





After we left the school, Mom drove us to my martial arts dojo, The Long Island Ninjutsu Center, for their Halloween party. My friend Jessica met us there. It was a great party. There was a lot of running around, and games, and even an obstacle course! We had pizza and cupcakes too. Then they had the best costume contest, and I won! I was dressed as Ob-wan Kenobi when he was a young Padawan in Star Wars: Episode I, The Phantom Menace. Everyone liked Douglas’ costume too!






We were so tired after all that, we fell right asleep as soon as we got home.

Saturday, October 27, 2007

Today we went to Suffolk Community College for another Halloween celebration! It was LOTS of fun! They had all sorts of games and a great DJ. I loved the music. I think Douglas did too. We enjoyed watching the college students’ dance.



My favorite game was a crazy inflatable hockey table game that you played with 8 people. It was a lot of fun and I even scored a few goals!



The college students were really nice and we got lots of candy for playing the games. We decided to skip the scary haunted house, but we stopped by a booth with some rescued Greyhound dogs. They are so sweet and gentle.

We had a quick lunch and did some shopping, and then I took a little nap. I was still kind of tired from the night before. After I woke up, we went to my friend Jessica’s house for another Halloween party! My friend Connor and his parents were there, and Paige and her parents too. We all wore costumes, even Uncle Rob!





We played in Jessica’s play room, and I am pretty sure we took out every single one of her toys. We stayed there pretty late because we were all having so much fun.

Sunday, October 28, 2007

I got up and had breakfast, then put my soccer gear on and hit the field. Our game started at 10:30 a.m. My team’s name is the “Jimmy Neutrons”. My teammates are all good friends. I put Douglas in a sportier outfit for this day.




My teammates really liked Douglas and thought it was cool he came to watch us play. Here we are with our coach, Mrs. Merkler.




After soccer, my Grandmother, Nonni, came to pick us up. She took Douglas and me to a really nice restaurant called Lombardi’s on the Sound. We had a great brunch with some friends of my grandparents. Our waiter was really nice, and he even took a picture with Douglas and me!




While we were at the restaurant, we ran into one of my friends from class, Isabel! She was also eating with her family. It was really great seeing her and we played for a bit while we were waiting. She even drew me some really nice pictures.



Douglas had his own highchair at the restaurant. I think he likes strawberries!


After brunch, Nonni and Poppi and I went with their friends to look at some new condos. Douglas came too. The real estate lady was very nice, and even had a big bowl of candy!



Nonni took us to the park for a bit after this. It was pretty cold outside, but we had lots of fun running around with my friends. Afterwards, I was really dirty, so it was time for a bath!




Mom came to pick me up soon after, and now it is time for bed. I had a really great time bringing Douglas around with me this weekend. I can’t wait to see where he goes next!

Sunday, November 11, 2007 11:16 PM CST

Please keep another brave little warrior princess in your prayers. Emily’s path has been similar to Kendall’s in many ways. She is also a twin, and was diagnosed with stage IV Neuroblastoma just a few months before Kendall. Both kids did amazingly well during their initial treatment, and she relapsed just a couple of weeks before he did. I am just heartbroken for her and her lovely family.


Today was Remembrance Sunday at my church. It is a day we set aside to honor and remember those who have died, especially during the previous year. The names of the departed are read, and we put flowers on a cross at the front of the church. Names of those who died in previous years are also recited from cards you give out during the service. It is a difficult thing hearing your son’s name be read among those who have died. I was sitting with my friend Cindy, who lost her father this year, my friend Kathy who lost her father last year, and my mom. It was very hard, but I was glad we were all there to support each other, and we got through the service OK. Then they brought out the kids from Sunday School, and they told them what the cross was for and invited the children to place flowers too. When Zachary got there, the flowers were all gone. He looked a bit confused for a moment, but he quietly just walked over to where we were sitting without complaint. After the service, we went back in when they had replenished the flowers for the next service, and I took a picture of Zach placing his flower for Kendall. I am kind of glad they had run out, because I wouldn’t have had the photo otherwise. You can see it above. I also posted photos from Zachary’s trick or treating with my nephew Nicholas. As you can see, he was very cute dressed as Yoda. There is one picture of him kissing a scarecrow someone had posted on their tree that is just precious! He just loved this scarecrow!

Anyway, the whole ceremony today got me to thinking about all of the children I know who have died. The list is way too long. It is absolutely appauling. Just off the top of my head, when I include children I have met, and those whose stories I have followed through my online group or their caringbridge pages, I remember today the following brave young warriors: Michael, Caroline, Sophia, Alex, Christi, Penelope, Carter, James, Trey, Bennie, Jamie, Chris, Jacob, Zachary H., Michael Z., Ben, Robert, Lance, Ashleigh, Luke, Becca, Madison, Nick, Trevor, Jake, Natalie, Shayne, Michaela, and Cryton. I apologize to any that I may have missed. There are literally so many they fill my head sometimes. But all of these children have made an impact on my heart. They are the reason I was so easy to convince to shave my head for a St. Baldrick’s event. I will be having more information on that soon. I need to wait until they receive my written permission slip to allow Kendall to be honored on their site. Then I can finish my registration and I will post the information.

I will also post another reminder soon about the fundraiser for the adorable Miss Alexa. Keep this little cutie in your prayers. Also, if you have any clothing or bedding you want to get rid of, give me a call or email and I’ll try to get to it. We will be dropping off clothes at Oxhead Lane school on Saturday 11/17/07 to help raise money for another local family who has been affected by cancer. I will get directions and try to post them shortly.


Zachary has been doing well, and he really had a great time on Friday. I kept him out of school to take him to a private showing of “The Bee Movie” arranged by The Morgan Center. Morgan and her brother Trevor have been so sweet and kind to my family. They always include us, and Zachary really looks up to Trevor. He was so thrilled to see them, and many of his other old friends. Morgan is an amazing young lady, and she raises money to help brighten the lives of these children. Our group had the theater to ourselves (very important to children whose immune systems are compromised!) and they brought the popcorn and soda too. The kids even got adorable cuddly “Bee” toys.

I am also glad that Nancy, Morgan and Trevor’s very proud mom, talked me into taking Zachary to John Theissen’s Wish Room event. For those who aren’t familiar with the Theissen family, please go to their website and click on “How it all began”. It is an amazing and inspirational story. They collect tens of thousands of toys each year to brighten the lives of sick and disadvantaged children throughout the area. They also sell Sports, Entertainment, Rock and Roll, and Movie Memorabilia for those who are interested. Lots of cool stuff there, and it helps support their mission. The whole family is just wonderful: John Jr. entertained Zachary and the other kids for hours with various video games they had set up, and Heather was there to greet everyone at the door, with the newest member of the family, the beautiful little Hannah. I fondly remember past events with the Theissens, and while I was looking at their website, I found a photo of Kendall from last year’s Day to Remember event! I didn’t even know they took it. It is in the newsletter. Just scroll down to page 12. That event took place at a local day camp and was definitely a memorable time.

After I finally dragged Zachary away from the video games, we stopped by my friend Josette’s house. Zachary had a great time playing with her beautiful little girls, Gia and Faith, and I got a chance to upload a bunch of pictures of Zachary and Kendall that she had on her computer! The top shot on the page today is one of them, and I was so thrilled to get these pictures. That one was taken at the Morgan Center a year ago. You can see Gia on the end with the sparkly thin in her hair, and Kendall looking so happy and clearly having a great time. I am forever grateful for The Morgan Center. Without them, Kendall would not have likely had any preschool experience, and he never would have had a chance to get to know so many friends. I also gained a lot of love and support from the other mothers and the teacher. There are so many wonderful memories that we have now directly because of them. We have been truly blessed.


If anyone else has photos of Kendall and Zachary that I may not have, or if you want to share stories of Kendall, feel free to call or write to me. These things are precious to me and I treasure each one.

Thursday, November 8, 2007 10:19 PM CST

Sorry for the lack of updates, but I have been without a computer for a week or so. Actually, I have a nice new computer here, but it is not yet hooked up to the internet. Maybe tomorrow. Anyway, we are fine. We had a pretty nice Halloween. It was bittersweet of course. Zachary enjoyed Trick or Treating around Nonni's house. I had a good time helping out with the Halloween projects in his class. I'll update more on some other happenings later, but right now I wanted to let you all know about a few fundraising projects we have going on.

First of all, my dear friend Cindy Merkler has been very busy lately! She is setting up a fundraiser for an absolutely adorable little girl named Alexa. This sweet little 3-year-old was diagnosed with a rare form of kidney cancer called clear cell sarcoma. I am going to attempt to post her flyer here (I'm too tired to do the nice fonts, so it will just be in regular type):


Join us at the
Alexa Renee Moore
Shopping Night Out

Monday, December 3, 2007
6 p.m. – 9 p.m.
Spectacular Eastside Parties
10 East 5th Street, Deer Park
(631) 254-0959

Raffles, food, and shopping galore!

Alexa is a 3 year old currently undergoing treatment for a rare cancer of the kidney called Clear Cell Sarcoma.
Please join us to show support and raise funds for her and her family.
For questions/comments please contact:
alexareneediva@yahoo.com

Keep this darling little girl and her family in your prayers.


Also, Cindy is organizing a St. Baldrick's event in Kendall's honor. We will both be shaving our heads! How is that for dedication. I think the change will do me good. I need to keep positive. It is funny in a way. You would think that after losing a child you wouldn't care so much about seeing a cure, but just the oposite is true. Every time I hear of a new diagnosis, relapse or death, it stabs me right in the heart and brings up a lot of that anger and sadness all over again. I want to see pediatric cancer gone. Forever. Here is the link to the site: St. Baldricks Deer Park. I know I am not currently registered as a shavee. Give me couple of days. I had some trouble with my account registration and I'm just too tired to figure it out now. Also, they are waiting for me to send in writen confirmation allowing me to post Kendall's photo and story so that he can be honored in the event. This could take a couple of weeks. The event should be a lot of fun, and it is aimed at families with children. I will get more details out soon.

Another fundraiser comes from my friend Helene. She forwared this email to me, and it seems like such a small thing to ask for.
*****************
Hi,

This e-mail was sent to me, so I am sending it out hoping that some of you have some old clothing and/or bedding that you can donate. Ryan Kouril is a 12-year-old boy who was diagnosed with cancer last June. Any money that is raised from this will go directly to the Kouril family. If you have any questions, e-mail or call. Thanks, Ginny


Hello everyone,

Just a friendly reminder that we are having a clothes drive (incl. bedding and clothing accessories) for the Kouril family on Sat. Nov 17th. Drop off will be at Oxhead in the rear parking lot between 9-2pm. If it is raining, we will be in front under the overhang. The company that is coming to take the clothes will pay the family .13/lb. It adds up quickly. Please spread the word and clean out those closets.

:)

******************

So for those of you who have some old clothes you would like to get rid of, just bring them by the school. I will be happy to make local pickups (within reasonable driving distance) of clothes for those who wish to donate but don't have time to drop them off. Just email me as soon as possible so I can set up a time to make the pickup. I have a busy day that day, as I will also be at a remberance service in St. James for children who died of pediatric cancer. This is sponsered by Stony Brook's oncology unit.

Anyway, thank you to everyone for keeping tabs on us. I'll post new photos shortly. I will also be posting our photo essay on "My Weekend with Douglas", the class bear. It is so cute and I got lots of cool pictures. But it will take up a lot of space so I will have to cut out some of the other photos on the page temporarily so that it will load properly. I have another very busy and hectic weekend planned, so I have no idea when I will get to this. I find it better when I keep busy, but sooner or later I am going to have to take some time to just relax a bit.

Saturday, October 27, 2007 10:55 AM CDT

I just haven't felt much like updating these past few days. Or sometimes I had, but was just too busy to get around too it.

I am very sad to tell you of another wonderful child that we met over in CHOP who relapsed recently. Brandon Koontz is eight years old, and his family was hoping to hear that they could switch to scans every six months. Now he will be starting chemo again instead. Please keep this sweet family in your prayers. Katie Krize seems to be feeling better, but lets pray that the new chemo regime is working and can help buy her time for some more options. Keep Austin Melgar in your prayers for stable or improve scans. His family hopes to start another round of chemo next week, but it will depend upon his scans. There are so many other children I could add to my list. It just breaks my heart to hear of so many suffering and dying. Please keep supporting research for childhood cancers. We still have a long way to go. I'll be announcing some fundraising efforts shortly.

Anyway, the Memorial Service at CHOP was beautiful and touching, though somber. It was a lot harder for me than the one at Stony Brook. CHOP was such a special place, and we really made the trips there fun. I have so many wonderful memories of my boys there. The Ronald McDonald house really helped to make my boys feel special and loved, and to provide us with some great memories. Not long after that top photo was taken at CHOP, I learned we had more bad news on Kendall's Scans. We were going to drive back home, but decided to stay for the Christmas Party instead. And what a great choice it was! Kendall and Zachary had one of the best times of their lives. They met Ronald McDonald himself, and he played with them and entertained us all. And there were great toys... just the kind of things my boys would like. Oh, and they let the kids do some "Christmas Shopping" too! Some sweet volunteers set it all up in the lounge area. They had tables full of donated items. The kids could pick out what they wanted to give to someone, and the volunteers (students at local colleges) wrapped the gifts for them. Zachary spent a lot of time choosing each thing just right. I think he only picked out two gifts. Kendall "shopped" with such enthusiasm and excitement, it brought tears to my eyes. I couldn't help hiding out behind a plant and just watching him. He would run to a table full of things, quickly look it over, grab an item, and skip back to the volunteer with a huge smile and say "This is for my mom because she loves coffee!", then run back to the table and pick something else. He picked out a candle for my mom and Fritz, and a picture frame, and some cookie cutters. For Neil he picked out a very sexy bar of soap with a lady on the box (I have no idea why!) and a candle too. We treasure these items. I drink from Kendall's cup almost every day.

I'm having a hard time moving into the holidays really. I went to Target yesterday to buy a couple of things, and I ended up in the Halloween section for no real reason just looking around and crying quietly. Kendall loved halloween. I couldn't help but wonder what he would have been this year. Maybe he would have been a Jedi like Zachary, but he would have choosen a different one... I think he'd have wanted to be a young Anakin (Zachary is Ob-wan Kenobi). But you never knew with Kendall. He could surprise you. I was really stuck looking at the scary monster masks, and I wondered again why I didn't let him have one last year. He really wanted to be like the monster from Scream or something hideous like that. I said no beacause he couldn't wear something like that to school, it would terrify the other kids. But so what! Why couldn't I have just let him have to play with or to wear trick or treating. Why was I so damned concerned about everyone else except for the most important person in my life. I will never know. It is like the Moon Sand. I cry every time I hear the comercial. Kendall loved their slogan "The Fun Never Ends". He would beg me for that stuff. I mean to get it, but I hate to order things over the phone, and I was too busy to get to the store to pick some up. During his last week, I found some at Target and brought it to him. He never had a chance to play with it though... he just wasn't feeling up to it. Zachary was playing with it in the Family Room at Stony Brook with a little girl he met there... about an hour before Kendall died.

I still have trouble believing it sometimes. It almost seems like he was just a figment of my imagination. How could such a strong life be there one minute, and gone the next. It is just impossible.

Anyway, the trip to CHOP was nice, but sad. The ceremony was very somber. It was amazing to see all the people from different cultures, and religions, and socioeconomic groups sitting together in one place with a common loss so deep and painful. It was a very peaceful ceremony. I am glad we went. Seeing the photos of all those other children, especially the little babies, really brought things into perspective for me. So many of the children represented there only lived for a few hours, or a couple of months. They never had a chance to do anything at all. I wish Kendall had a chance to do more in his life, but I am very grateful that I had the memories that we did. I am so grateful that we had the chance to make a wish trip to Disney, and that he had a chance to meet Ronald McDonald and dance with him, and that he had a school to go to and got to make friends and go to camp and all those other things. And I will try harder to keep all that in mind, even as I mourne the fact that he never got to go to a Shiai, or to Kindergarten, or high school, or college......

I'm getting myself all worked up again. I have to cut it out.

Back onto happier things, Zachary was Star of the Week last week, and he had a great time. He got to make a display for their wall of all the things he liked, and to bring in his favorite toys to share (his car collection). I went to his school and read a book to his class -- The Sneetches, by Dr. Seuss. Then his class made him a book he could keep with all the reasons they like him. And he got to take home Douglas, the class bear, for the weekend! What a great weekend to take him. We got to bring Douglas to Trick or Treat Street at his Kindergarten. He dressed him up as batman (I'll have the photos later in the week). I made the costume from an old one I had of Kendall's that he got for free at the hospital. I just cut the cape down. We then went to a halloween party at his ninjutsu class. He brought Jessica with him and the kids had a blast. Lots of running and excitement.

Anyway, he wants me to play with him now and I have promised. Later we are going out to my friend Kathy's house for a party, and he has soccer tomorrow, so Douglas the bear will be busy. I'll see if he has any soccer clothes in his bag!

Tuesday, October 16, 2007 9:00 PM CDT

I am again saddened to report yet another brave warrior has earned his angel wings. Lucas Tran died in his home surrounded by his loving and devastated family. He was diagnosed at only 9 months old, and passed away shortly before his fourth birthday. My heart breaks just breaks for this lovely family. Please keep them in your prayers. You can leave messages of support on his website.

*********************************

I was hoping to have the photos by now, but we've been very busy these past few days. Anyway, Zachary did awesome in his first Ninjutsu Shiai! We somehow missed his group, so he went with the 7-year-old white belts. There were only two other boys in this group, and one of them was his friend Cameron from his dojo. So this worked out well for him.

Sensei Vinny gave him a very quick refresher on the required take-downs that he would be asked to demonstrate. These would not have been required in his original group, so he hadn't really practiced them. But it was OK. Cameron went first and did all three moves pretty well. Zachary did two of the three, but those two he did well. The third boy seemed a bit nervous, but I thought he did just fine too. He also only did two of the moves that were required. Cameron was awarded Gold for this section, and Zachary got the silver. This was followed by demonstration of escape maneuvers. This is one of Zachary's favorite things, and he very enthusiastically performed several beautiful cartwheels and rolls. He did very well, and came in second place for this as well. In his excitement, he again failed to do some of the required maneuvers (he forgot side rolls...though he did do lots of extra cartwheels!).

The third skill they were to demonstrate was Tae Sabaki, or avoidance maneuvers. The instructer swings a rather large padded stick at them, and they are to duck, jump, or move side to side in the proper form. Zachary did very well at this, and he came in first! This was something we practice a lot, with me swinging his light saber at him. I was very proud of him for focusing and doing these maneuvers nicely, as he tends to get really silly with it.

The last section was a padded weapon fight. The third child choose not to participate in this. Cameron and Zachary both did fantastic in this. I was surprised. The instructor demonstrated what they had to do to be considered a point. Just swinging and hitting was not enough. He wanted the child to show control of the weapon, by pulling back and resetting after the strike. This wasn't something he practiced a lot. Mostly when the kids got to work with padded weapons in the class, they were just getting used to holding and swinging them, and not much technique was used. Luckily, Zachary had one or two classes over the summer where he was the only student or there was a very small group, and during those sessions Sensei Vinny had practiced some sword strikes with them and some more specific form. So he did really well with this and he won the Gold in this section as well.

Zachary was very proud of his medals, and that he won some of the events (even though there were only a two other kids in his group!). It is great that he was in such a small group for his first Shiai. Now he will be better prepared for the next one as he will have more of an idea of what to expect. The hold these competitions twice a year. The next one will be in the Spring.

After the Shiai, we stopped by his friend Drew's house! Zachary was just thrilled to see Drew and Logan, and it was nice to talk to their mom, Melissa. Drew was nice enough to let Zachary go for a ride on his motorized Jeep... a real thrill! We went out late Saturday night for a little party over at Rob and Linda's. We had a great time, but Zachary was definitely not his best for his soccer game on Sunday!

Tomorrow I am scheduled for another platelet donation. This will be three weeks in a row. After that, I'll have to take a short break as I need a few vaccinations for my job. I am determined to give back some of the many platelets and red blood cells that kept my sweet Kendall alive for a long time. There is a great need out there... especially for platelet donors. It does take a little longer than whole blood, but I find it easier on me actually. When I give whole blood, I tend to feel tired and soemtimes dizzy for a couple of days, because I am kind of borderline anemic. But donating platelets, I feel fine within a few minutes of donating... as long as I drink enough, and take a bit of calcium. So while I am out of commission, go ahead and take up the slack and get out there and donate. Hope Lutheran is having another blood drive in November, and I'll make sure to get the dates and contact info up.

Saturday, October 13, 2007 0:45 AM CDT

First of all, I must ask for urgent prayers for a very brave little boy who has taken a sudden turn for the worse. Lucas Tran has progressed very rapidly, and his devastated family had to make the heartbreaking decision to put him on Hospice. Please keep this lovely family in your prayers. You can go to their site to leave messages of support in the guestbook.

*************************************
I have some updates regarding funding for pediatric cancer. Thank you to my friend Kim Malarkey, mom of the adorable Ryan Malarkey for researching and sharing these important facts with us (the facts and statistics were taken from her post to our NB listserve… the comments are mostly mine!):

I talked to someone at the NATIONAL CANCER INSTITUTE and found out in FY 2006, they had 4.8 billion for cancer. 179.5 million went to pediatric. 23 million went to NB.
I contacted a person at the AMERICAN CANCER SOCIETY and found out in FY 2006, 102 million was spent on cancer research, 5.1 million of that was for Pediatric Cancer. This isn’t much, but it is a big improvement from the previous year… in 2005, ACS gave 1.6 million to pediatric cancer.

The good news is, that currently in 2007, ACS has allocated approximately 21 million to pediatric cancer (49 grants) and 3.7 million specifically to NB (6 grants). Again, this is only a small percentage of their budget, but the fact that they have increased their support so significantly brings hope that maybe in the near future we will start seeing some real advances in treatments for these children! Thank you to all who joined me in contacting the ACS and letting them know how we felt about the inequities in their funding practices. I have no doubt that this helped turn things around and effect a change in their practices. I am not sure if they changed their policy regarding allowing groups to “earmark” their fundraising efforts specifically to pediatric cancer or not. If you want to make sure your donations go specifically to research children’s cancer, you are still better off donating to an organization that has pediatric cancer research as their main goal (Alex’s Lemonade Stand, CureSearch, Children’s Neuroblastoma Cancer Foundation, St. Baldrick’s, etc). I should mention that the ACS also funds several camps and support programs, as well as financial assistance and educational programs, which are also meaningful and helpful to many.

The Conquer Childhood Cancer Act is due to be discussed in committee soon. If this bill is signed into law, it would mean 150 million towards pediatric cancer funding. It's especially important to contact our representatives NOW. You can check if your REPRESENTATIVE is on board here:
http://thomas.loc.gov/cgi-bin/bdquery/z?d110:HR01553:@@@P

You can check to see if your SENATOR is a cosponsor here:
http://www.thomas.gov/cgi-bin/bdquery/z?d110:SN00911:@@@N

If they aren’t, go ahead and call or write and let them know you want them to support this bill. For more information about the Conquer Childhood Cancer Act, please visit http://www.curesearch.org. There are "ready-to-send" e-mail letters to reps and senators, and old fashioned addresses are available too.

************************************

Tomorrow is Zachary’s first Ninjutsu Shiai! This is a friendly competition and demonstration of skills. He is very excited. I am sure it will be a lot of fun. I actually managed to get yet another Saturday off in order to be there to see him! I will post some photos as soon as I can.
At the request of one of my online supporters, I will also see if I can snap a nice photo of my “gourd creature” that I left at Kendall’s gravesite. It didn’t occur to me to take a picture. The weather has been crummy the last few days, and I can only hope it is still intact. If not, maybe I’ll put another together… they are fun and easy.
Thank you again to all who continue to keep us in their prayers.

**********************************

“I know God will not give me anything I can't handle. I just wish that He didn't trust me so much.”
- Mother Teresa.

Sunday, October 7, 2007 7:36 AM CDT

Please keep Katie Krize and her family in your prayers. It appears that the MIBG treatment failed her, and her disease has progressed again. Also, Austin as he moves into yet another clinical trial half-way across the country from his home. And there is a very cute little girl named Alexa whose story I have been following for a while now. She has a rare cancer called clear cell sarcoma of the kidney.

Some of you may recall about a month ago that I was a bit disturbed to find the gravesite next to Kendall's had been opened. Once I realized that we had brought the one on the other side, I felt better. During the past month, I sometimes saw flowers left there, and I always watered them and even arranged them in holders at times. On Friday, I met the son of the occupant of that gravesite. I was placing some decorative gords at Kendall's site. I just felt like doing something for fall, because it was one of his favorite times of the year. I put some photos up top of some of our fall fun from years past. I was feeling really down and missing Kendall terribly as we started talking about Halloween costumes and pumpkin picking. Anyway, I found a couple of cute little gords and put them together with small sticks to make a funny animal-like thing for Kendall, and I put it by his gravesite. He would have loved it. I added some new flowers and got rid of the old, then I watered his neighbors flowers too. That was when the man came up to me. He was surprised and touched that I had put water in his father's flowers. We talked for a bit, he is a very nice guy, full of grief. We had a lot in common. His father died young, at only 63... same age as my dad. He was in the construction business ... similar to my dad (a tile setter). He was a typical Italian father... like my dad. And he died of a very rare and aggressive cancer, just like my son. His father worked almost up until the end. The disease was fast... he was diagnosed in February and was gone by August. His son, John C. Jr., told me he couldn't seem to get motivated to do anything and just couldn't get back into working. Lord I know that feeling! Apparently, he worked with his dad, and he is having a hard time of it. Please keep the family of the late John C. Sr, and his son in your prayers. I talked to him about some techniques that help me get through the days, and nights. We both cried a bit, then I left. It was a really beautiful moment. I am not usually one to just talk to people I don't know (in person I mean!), but I do think John appreciated it. I think I will make a temporary marker for his father with some tile (I'm sure I have some in the basement). He seemed unhappy that it was going to take so long to get the marker made,and once winter comes,it could be hard to get it installed.

Zachary had a great time on Saturday with his cousins Andrew and Alex, who were vising for Andrew's birthday. He was so excited to see them. Earlier in the day, he was in his very first real parade! He loved it, though it meant getting up very early (they had us get there at 8:30!), standing around for close to an hour before we left, and walking close to a mile! He helped hold the banner most of the way. The parade was for the local Newfield High School's homecomming, and the kids did a great job on the floats. It was really a lot of fun. I'll put the pictures up later today or tomorrow as soon as I get them off my camera.

We got Zachary a new fish last night to replace the one that died. He named this one Michael too! I hope him and Jimmy Neutron get along OK. I was a bit disturbed when the lady fished it out of the tank at the local Petco. There were a lot of floating fish on the top of that tank! He seemed like a nice fast healthy looking sort though.

Thank you to everyone who still keeps up with my family and follows my ramblings. We have been very blessed with good friends and family. Thank you to all who leave messages in my guestbook. I do actually read them, even if I don't often respond.

Tuesday, October 2, 2007 9:59 PM CDT

On Friday, we went to the Bicycle Path Kindergarten family picnic. Zachary had a great time. Mom and Fritz came, but Neil had to work that night. Zachary and and his friend Sean ran around for hours. I brought a soccer ball which was a big hit. Zachary also enjoyed his favorite dance... the Casper Slide(they had a fun DJ). It was really a nice day.

On Sunday, after his soccer game, Zachary, my mom and Fritz, and I went to a memorial service at Stony Brook for the Baby and Children's Memorial Garden. The garden is really beautiful. There will be a brick (or probably three) there with Kendall's name on it soon. We are working on the wording. I am glad we went. The ceremony was beautiful. They had some family members read poems or essays. I decided not to do a reading this time, but maybe next time. Then they called each child being honored by name, and the family came up to light a candle. Zachary was very proud to light the candle for Kendall, and he got to keep it too. They also gave us a book with letters and stories from parents whose children died, and a pretty heart-shaped pin with one piece missing. I gave the pin to my mom. There were also little pink and blue heart-shaped stones with handprints or footprints on them. They ran out of blue, so Zachary took a few pink ones. The had some refreshments, then we went out to the Garden and they did a final poetry reading and dove release there. It was just beautiful. Perfect weather. Zachary was thrilled to have a chance to see the birds up close before they were let go. We collected some of the white feathers, and I later put them in Kendall's memory box along with the ribbons they gave us.

It was nice to see some of the nurses and other staff from the hospital. Sister Lynn and Darla, the psychologist, were there too, as well as Paulette from Child Life. Zachary greeted them all as his old friends, and was clearly happy to see them. I was a bit worried about how he would react going back to the hospital, but he wanted to go (insisted upon it actually). Apparently, he really wanted to go back to the Gift Shop to get one of those Ghirdelli Chocolate Mint Squares. That was his motivation. After we walked all the way back to the car, he made me turn around and head back into the Gift Shop, probably more than a half-mile walk away. I told him I could get them at another store, but he wanted the ones from the Gift Shop. Oh well, I could use the exercise anyway! I asked him if it made him sad to go back to this hospital and he said no, because he and Kendall had so much fun there and so many good times. He said it reminds him of happy times, not sad. I suppose children block out what they don't want to remember. Still, he is right in a way, we always tried to make the best of whatever situation we were in. We spent a lot of time there. We did our best to make it fun when we could. Kendall was an expert at it. He loved to play hide and seek in the tower building (this was a real challenge when running with a full IV pole!). He loved to go outside and feed the pigeons. I made sure that he got out whenever he could during hospitalizations. He loved to play basketball or soccer in the hallway or the room if he couldn't. The boys LOVED the playroom. They loved the train table and all the toys and video games. Later, they loved the playstation right in the room. Neil would bring Zachary every day, and we did our best to be a family. I guess we more or less succeeded, as Zachary seems to have forgotten all the unpleasant things. Maybe it is best that way. I try not to dwell on them either. When I think of Kendall, he always has a smile on his face and a dance in his step.

It was hard for me to go too. Neil just really doesn't want to do these things. But I wanted to make sure Kendall's name was read with the other children. I am at a stage where it is important to me that he is remembered, and I will go to any memorial service I can for this purpose. I don't know how long I will keep it up, but I plan on going to a small prayer service in November at a church near StonyBrook specifically for the children who died of cancer there, and I plan on going to CHOP in October for a memorial service as well. I already sent a photo. Neil is not likely to go to any of these, but that is OK. We all grieve in our own way. Zachary will be coming to CHOP, but I may have him skip the church service in November. We'll see. Zachary has been begging me to take him back to Philly, and to see the hospital there and the Ronald McDonald house too. This was such a big part of his life for the last year, and he feels the loss of it strongly. I will call the Philly RMH and see if it would be OK for us to visit. I know my brother Nick had a stone placed there for Kendall, and maybe it will be in by then. Zachary would like that. We really made the best of our trips to Philly too, and I have a lot of great memories there. I will take a tip from Zachary and just block out the few bad memories that may be lurking around. Mostly we had a great time and a great quality of life there.

After the ceremony, we went to the Cemetery. Zachary put his little pink heart stone on the grave marker, and burried a stone from StonyBrook in the dirt near it. Then he went to mom and Fritz's for a bit, and I walked over to get more water for the flowers. I took out Kendall's frog quilt and layed down next to him for a bit, and read Carrie's poem. A bee buzzed by my ear, and made me look up and notice a heart-shaped opening in the clouds above my head, and two little flying insects of some sort (looked like tiny, transparent, dragon flies) flying in and out of it. When I looked over at his stone again, I noticed a single white flower fell out of the pot and was laying across his marker near the heart-shaped stone Zachary left. I know it wasn't there when I went to get the water because I had cleaned off his stone first with a towel I keep in my car for just such occasions (I do this every time I go there.... it gets pretty dusty because the grass still isn't fully grown around yet). I don't remember seeing the flower when I first put the blanket down, but then I wasn't looking. No one else was arround. I suppose my mom could have placed it there when I went to get water, but it seems so unlike her. I mean, why would she do that? She was headed back towards her car already. Anyway, whether it was an official sign or not, it made me feel better, so good enough for me. I wish I had brought my camera.

Today when we got back from the bus stop, the kids across the street called out to Zachary and asked him to come look at a turtle the found. It had been lodged beneath their fence. I said it was a box turtle, and they were very excited to find someone who knew about turtles. Unfortunately, that was about the extent of my knowledge, other than to tell them it wouldn't be right to keep it in a cage when it is used to being free. They were very concerned about it though. Their mom, Carolee, told the boys to just leave it in the yard, but they were scared it would be hit by a car or run over with the lawnmower. So I called our vet to find the local wildlife rehab center, and as luck would have it, they have an arrangement with the local emergency vet. So I call them and took "Gear" over there. We named her Gear because the markings on one side of her shell seemed to spell out this word. It was pretty cool. She was a very beautiful turtle, with bright colors and seemed to be in good condition though a bit uptight at all the handling.

Zachary and I drove her to the Vet, filled out the papers for the Volunteers for Wildlife, and then promptly had the vet give us back the turtle and tell us to put it back where we found it, on the other side of the fence she was trying to get through. She explained that this is the kindest thing for them. The volunteers would take her if she was sick or injured, but Gear was in good shape overall. She said the turtles are driven to get back to their home territory, and she would be unhappy elsewhere and would just keep trying to get back. So I took her back across to Carolee's yard, and one of her boys jumped the fence and put her down in a safe spot in the neighbors yard. She immediately made a beeline towards the oposite fence, where she crawled under to get into a nice wooded lot at the back of another neighbors' yard. We are sure this was where she wanted to be and it looked like a good safe area for her. Hopefully she will be OK.

It was wierd speaking with Carolee as we have hardly spoke since Kendall died. I tried to be friendly with their family when we first moved in, and she was so nice to us when Kendall was first diagnosed. But we lost touch over the last year. It was too hard for me to be friends with anyone. One time she had invited the boys to play in her yard while she was having a garage sale. I sat with her and some of the other neighbors and chatted for a bit, when her youngest asked if he could lie down inside. She told him it was OK, and that was when she said to me he wasn't feeling well because he had a fever for the last couple of days. I was horrified! She knew Kendall had cancer, and I thought I had made it clear he couldn't fight off illness. Maybe she didn't really know. I didn't say much other than to say we had to leave, but I think she realized she made a mistake. I didn't really socialize from then on, and I never let my boys play with her kids because I was worried about illness all the time. I didn't tell her when Kendall died, and she may not have known right away. We didn't tell any of our neighbors. It was too hard. A few weeks later I mentioned it to the girl who lives next door because she asked about Kendall. She probably let Carolee know, but I don't know. One day I was gone for two months straight, and I came back with only one child. I'm sure they figured it out. She hasn't asked, so I say nothing.

Speaking of neighbors, Captain George moved away. I can't believe how sad this made me. One day a long time ago, Kendall and Zachary were in the bay window pretending to be cats (no, they weren't allowed to do this). When I went to get them out, Kendall asked why Daddy was talking to Captain Feathersword. I looked outside, and sure enough Neil was talking to a nice older man with a long grey ponytail and a bandana on his head. He looked nothing like Captain Feathersword, but Kendall insisted he must be pirate. So I took the boys outside to meet him. George was very nice, and he was just asking Neil about some railroad ties we were getting rid of. I introduced the boys who immediately turned shy, but Kendall got up the guts to ask him if he was a captain. I explained to him that the boys associated bandanas on the head with pirates, and he thought that was hysterical. He told the boys he had a real boat that he would show them soon. A few weeks later, his boat was in his driveway for the winter and he let the boys see it before he covered it up. He was always kind to the boys and nice to me and Neil. When they sold the house and moved, I saw them packing the truck on what must have been the last day. I wanted to go and say something, but I just couldn't. He waved to me at one point, and I waved back,then ran into my house crying. It just seemed like yet another part of our familiar life was going away. It was silly, I hardly even knew him. But I just kept remembering how everytime we passed his house Kendall would notice it. "Look Mom, Captain George put up Christmas lights!" or "Mom, is that Captain George's new dog?", or "Captain George's boat must be on the water today." It was so cute. Zachary did it too, but not to the extent that Kendall did. It was his thing. He just liked Captain George. Now I am not likely to see him again, and it just makes me a bit sad.

It is late and I am tired. I'll update the photos at another time. Please keep our fellow NB warriors in your prayers.

Sunday, September 23, 2007 9:18 PM CDT

I had another Kendall dream. It was so beautiful and wonderful and sweet. The setting was kind of a combination of children's museum, theme park, and Zoo. It had elements of many places we had been to, and a few I've never seen. Kendall, Zachary, Neil, my mom, Fritz and even Trevor and Morgan were there! I must have had them on my mind with the open house for the Morgan Center coming up. The last thing I remember in the dream, was that everyone was sitting in a big room with tables (maybe a cafeteria or something) and I had gone up the path a little ways and saw a fun thing that I knew Kendall would love. So I went back and told Kendall to follow me. He came, and Trevor and Zachary followed. They were all wearing costumes. Trevor was a pirate with a flowing cape, Zachary was wearing some sort of Jedi outfit (maybe Luke Skywalker, but could have been OB-Wan Kenobi), Kendall, was... well Kendall! He had on about five different costumes! I can't remember exactly, but there was a turtle shell (like from the Ninja turtles) a frog headband, a shirt with a horse on it, wacky sunglasses, and some sort of superhero-type cape. This would sound weird on any other child, but Kendall loved to mix and match costumes, and had no qualms about wearing a clown’s wig with a fireman outfit, or toddling around in high heels with a girly headband and skirt on, or some other crazy getup! I thought I’d post some photos of some of his funnier outfits (see above). One of them I found had the horse shirt I remembered from my dream. It was his friend Jessica’s. We borrowed it from them when we were over at their house and he threw up his meds (he was on the irinotecan and temodar at the time, and it turned out it was starting to not work any longer. A few weeks later we found he had progressed). He enjoyed the rest of the evening though, including eating an enormous piece of cheesecake at Pizzaria Uno!

Anyway, back to the dream: I told them we were going to play a joke on Nonni. I sent Zachary to get her, and I told Trevor and Kendall to step on the colored bricks on either side of the path when I say go. We waited until she got to the gate, then they stepped on the bricks and it triggered a beautiful double fountain of water right at her! She got soaked. Kendall doubled over in laughter. My mom made a lot of fussing about getting her hair wet, but she was smiling too. She was always good natured about the kids' jokes. It reminded me of when we all got Shamooed at SeaWorld. We sat up in the soak Zone, and were lulled into complacency by the initial whales who didn't hardly even splash you. Then Shamoo came out, and SOAKED us! To the drawers! Several times. It was so funny. I have some great video of the aftermath. It was something that really amused Kendall. He laughed hysterically. Also, seeing those whales up so close (we were right near the front, and could see them below and above the water) was just amazing. I'm so glad Kendall got to have this experience. The dream was a good dream. I don’t get too many of those, so I cherish each one.

Zachary is having fun in soccer. Today he had his first game, and it was a lot of fun. I think it ended in a tie. Yesterday, we had a great time with Jessica at the Fun-4-All, an indoor playground (it was raining). The place is a lot of fun for children, and I couldn’t help but remember how much Kendall loved it there. He only got to go a few times. Places like that are really dangerous for children with cancer, because of the concentration of children and germs. But I let him go when his counts were good enough. I am really glad I did. I know with some of the other cancers that have better outcomes, the doctors really emphasize the importance of keeping their exposure to illness down, but I guess they know with the NB kids that they have to grab as much fun and living as they can when possible. I remember when I was first talking to the other mothers at the Morgan Center, most of whom had children with some form of leukemia or another. They were surprised that I routinely took Kendall to malls and McDonald’s, and even children’s museums, and such with ANC’s below 1000 (We kept him fairly isolated when it dropped below 500 though). I rarely put a mask on him either. They said their doctors ruled out most of that, except when their counts were really high. I’m glad ours went easy on us. The only time they really got on my case was the rolling in the leaves incident! Apparently, leaves are very filthy and can house dangerous molds and other germs. They warned me strongly to not let him do that again. After that, we changed our leaf play to stomping on the leaves, and I was careful to wash his hands and change his clothes as soon as possible afterwards. The truth is, Kendall was very lucky when it came to infections. He had significantly less hospitalizations for fever than any of the other children I knew. He never had a single case of C-Diff, or VRE, or any of the real superbugs. He never got shingles or other serious viral or fungal infections either. This was more luck than anything else.

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The following poem was written by my Canadian friend Carrie, (whose husband is one of the few adults diagnosed with neuroblastoma), in honor of a brave child named James Runde, who lost his battle to neuroblastoma a few days ago. She posted it on my “Angel’s” group, and Carrie has graciously given me permission to share it here.

how much taller
ever were you
in spirit
smiling, laughing, playing
while still in horrid pain

how much farther
did you reach
to touch the hearts of so many
in such a limited time

how much warmer
was your touch
as you lay within my arms
i would listen to you breathing
and pray for mercy
for heaven's gates
not to ask for you yet

how much stronger
were you
in your soul
as you faced such scary things

all i could do
was hold your hand
whisper words of love and strength
into your beautiful rosebud ear
and hope and pray it was enough

and now
i do not have your hand to hold
i reach
but cannot touch
beyond the veil your have been called

while i
must satisfy myself
with memories
of all that you are to me

now it is you
who whispers in my ear
strength
courage

but how my broken heart
rages
pain and anger boiling like lava
scorching me
scorching anything i touch

my mind reels
with the madness of grief
and the terror of the future
stretched long before me

and i
remember your towering lion's heart
hidden within the body
of one so young

and i am broken again
lying here
waiting for a wind to come
and blow cool
upon my aching soul

you taught me how to love
how to live
what true joy really is

you taught me how to pack
so much into so little time
my heart cries
and my body aches to hold you
just once more

but frail and human as i am
i know that you are holding me
i just wish i were not so numb
that i could feel your touch
reaching from beyond the veil
to comfort me
as always you had before

what overwhelming emptiness i feel
would to God that i had died with you
for i have become so hollow now
that i feel as though i had

please whisper into the ears of heaven for me
and ask
that i be given some portion of your spirit
that i might go on
and perhaps one day
live
as you have taught me

carrie

for young james
who has gone ahead of us
who now stands in the cloud of witnesses
awaiting our own journey across
while he whispers in God's ear for tenderness to surround his family
may the ears of our heart hear his voice as he cheers us on
courage
till we meet again


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Please continue your prayers for Austin, Katie, Kaitlyn and her family, and add in another brave little boy named Luke Tran. I'll post links another time.

Wednesday, September 19, 2007 11:25 AM CDT

I am sorry to say that another brave warrior has earned his Angel Wings.
Please pray for the family of James Runde, who passed way at home in the arms of his family.

Today marks one year since the bright and beautiful Christi Thomas joined the angels in Heaven. Please keep her sweet family in your prayers. She has some wonderful YouTube tributes on her website, grab some tissues and take a look, they are beautiful.

Also, please keep my Austrailian friends in your prayers. Colleen (who designed the background of this page for Kendall), is not only suffering through the horror of having her daughter Kaitlyn relapse, but her daughter, Chloe Jade, was just stillborn at 20 weeks. My heart goes out to this wonderful family.

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Zachary is doing OK, but has a bit of a cold. He enjoyed his first soccer game and practice, and he named one of his fish after the team, Jimmy Neutron. The other fish, who was named Michael (he said after his friend from the Morgan Center), unfortuately died yesterday. We had a brief and quiet ceremony for him. Zachary really took it very well. We will pick out a new friend for Jimmy so that he is not too lonely. I bought a small desktop tank with a filter and some decorations for the little fellows.

Anyway, I am feeling kind of low today. I went to the first PTA meeting yesterday, and pretty much signed up to help out with everything. Today I helped at the book fair for the children. I want to be involved in Zachary's school, but it does take a lot out of me. I miss Kendall horribly. I keep hearing his voice in my head, saything very Kendally things like "Are you impressed?!", or "I am NOT going to do it, no way, humpf!", or the way he would cross his pinky and ring finger, and point with the pinky and say "That, that?", when he was really little and learning words. He wanted to know what everything was. It was odd the way he always pointed with his pinky.... something I never saw any other child doing. He tried so hard to learn everything and was absolutely the most determined child. He wanted to do everything for himself and would get really mad if you tried to help. Even at a few months old, his determination was evident. If Zachary couldnt' reach something or do something, he would get frustrated and cry. Not Kendall, he kept trying, and trying... he seldom cried unless you tried to help him... then he would be furious! He was such a wonderful and sweet kid, and him and Zachary were so great together. I grieve the loss of Kendall AND the loss of my Twins. It is just horrible sometimes. Everything that Zachary does, I can't help but think that it would be so much better if he had Kendall with him too. He feels it also. While we were picking out books, he saw a green pen and he said, he wanted it because it reminded him of Kendall.

Anyway, enough venting for now. Kim Malarkey (Ryan's mom www.caringbridge.org/visit/ryanmalarkey) is putting together a book with pictures of her son and some the angel children to send to the politicians and help encourage them to sign the Conquer Childhood Cancer Act. If any of you have not yet done so, check to make sure your senators are onboard with this important legislation. You can get more information at Curesearch.

Monday, September 17, 2007 0:32 AM CDT

We went to the Bronx Zoo with Cindy Merkler and her children, Sean and Andrew this Friday. As you can see, Zachary had a great day. The last time we went there was with Kendall for a special Halloween day (that is why the boys were in their coustums that day). It was such a great day. Kendall felt well still and enjoyed it thoroughly. He road a camel, went on the monorail, and had a blast in the Children's Zoo. In the "snake dance" photo above, those who knew him will recognize is unique side-to-side dancing step that he did often as he as walking along. This time, he had his tongue out and was hissing like a snake (there are snakes in the tank behind him). I remember one day him dancing and skipping like that into Urgent Care with a 103 fever! It was hard to keep him down. He was very much on my mind while we rode the Bug Carousel. I remember there was a bit of drama because he insited that he get to ride a praying mantis bug. He just insisted. Luckily we were able to get one and he enjoyed the ride (Zachary was thankfully happy with a cricket!). This year there was again a bit of drama about picking the bugs to ride and it just reminded me of the time with Kendall. He was greatly on my mind when the ride was over. We stopped afterwards to get some popcorn at a snack stand, and there was a band getting ready to play in their pavillion. It was their Grandparent's Day celebration or something. Of all songs, the singer choose to sing "You Just Too Good To Be True"! I was absolutely stunned. It isn't a song we hear often. That was the song Neil and I first danced to at our wedding (the Lauren Hill version). Later, it was the very first song I sang to Kendall. I also used to sing it or hum it to the boys when I was feeding them. I am sure this was a sign that Kendall was near.

On Sunday, Zachary started Soccer. He is on Sean's team (coached by Cindy and Keith Merkler!). He had a great time,and looks adorable in his soccer uniform (photos to follow). Zachary just adores Sean and calls him his best friend. We are very fortunate and blessed by these nice people.

Zachary had a very fully day today -- started with Sunday School and soccer, then he went with mom and Fritz to a festival near their house. He came back with TWO goldfish! I ran out to Walmart to quickly get a proper tank set up. Hopefully they will live, at least for a little while.

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I believe I may have had a sign from my father! This would be a first. He has been grately on my mind ever since 9/11. I can't help but wonder if he ever made that voice recording or video tape he talked about. Probably not, but if so I'd really love to hear it. I was at Kendall's gravesite on Wednesday, and I was thinking about this, and about how sad it was that Kendall and Zachary really didn't get a chance to know their grandfather. They would have really loved him. I was also thinking about how at the time my grandmother (Mimi) died we were visiting the Veteran's Memorial at Eisenhower Park. I tend to go there instead of the cemetary to think about him. We were there placing flowers and flags near my dad's name, and feeding the geese. As these random thoughts went through my head, I stopped and picked up with I thought was a piece of paper. Instead, it was a small American Flag! The stick broke off and it was a bit tattered, but I kept it anyway.

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Please pray for James Runde, who on hospice at home with his family. Also, Austin Melgar, whose last treatment failed. Please pray they can find something else for him. Also, a friend of mine from my old job just found out her son's cancer is not responding to treatment. They have few options. She is a very private person so I will not give out a name. I am just heartbroken for them though.

Lastly, but certainly not least, please keep the family of Christi Thomas in your prayers on 9/19/07, as they face the begining of the second year without their precious daughter.

Tuesday, September 11, 2007 9:12 PM CDT

Zachary is starting to like school better, though it is a big adjustment for him. I'm getting along well at my new job, though it is a big adjustment for me! Today marks five months since I last saw my sweet little Kendall. I have been in a kind of funk all day. It is probably at least partly from lack of sleep. My schedule is a bit off still. But I'm sure there is a big part of it that is just me being contemplative.

It is hard not to think of where you were and what you were doing on this day six years ago when the terrorists crashed into the Towers and the pentagon, and heros forced another group to the ground in Pennsylvania. I was on my way in to work at the hospital, rushing a bit as usual, when I heard on the news a plane crashed into the World Trade Center. I figured it was a small plane... one of those private ones that just got out of control. I was walking rather quickly, when one of the maintenance men drove by on his little truck, and asked if I heard about the Towers. I said I heard a plane crashed, and he said... there were two! I'll never forget the cold, sick feeling that went through me at the time. One plane, could be an accident, two was certainly something much worse. As the story unfolded it was like being in a terrible fog. We were all in shock. We were all nervous working in oe of the tallest buildings in Nassau County! We were put on alert, and I remember running down to check the TV's ever few minutes. After a while, I started to wonder where my dad was. He was a tile setter, and often worked in the city. It took hours to get in touch with his wife, as the phones were in sorry shape. But she eventually called me to let me know he was OK, but that he was still trying to get out of Dodge so to speak. I remember talking to him afterwards, and he told me how it brought back so many of those old feelings from when he served in Korea. He had said he wanted to tape his thoughts so that he could share them with his grandchildren. At the time, he didn't actually have any. His first grandchild was born less than a month later. Not long after that, I found out I was pregnant with twins. And life goes on.

I was just thinking about how that horrible kicked in the gut feeling, and the shock and disbelief was so similar as to when the doctors come and tell you they see a mass on your child's CT the size of a small canteloup and that it is probably cancer. Maybe some of you can relate a little better. Last year around this time, I remember getting the awful news, again, that Kendall's treatment wasn't working. It was a treatment that had given us many good months of really good quality time with him. But that was the beginning of the end for Kendall. We still had quite a few months of good times after that, but none of the treatments they tried from that point on had any real lasting effect. I wish I had believed it a little sooner. I many have left work earlier. But I truly believed, even up to the end, that there would be something else. Some treatment to get him into one of those nice long remissions that others I know sometimes had. But we were not to be so fortunate. I still don't know why, and I no longer want to. I'm afraid that the answer to that question would be unbearable.

So we go on still. But a lot of the wind is gone from our sails and we just kind of drift along.

September is Childhood Cancer awareness month. I really wanted to hold a lemonade stand, but there was just too much else going on. I still may do one if someone will find me a place and time. I just don't have the energy to be seriously fundraising. I am just in awe of some of these parents who even duing treatment or after the loss of their child are able to raise thousands of dollars. Maybe I will be able to do a better job next year. Anyway, please consider donating to one of the pediatric cancer research organizations. A few good ones are Alex's Lemonade Stand, Lunch for Life (CNCF) and Curesearch.

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Please continue to pray for our very brave warrior, James Runde during his time on hospice. Also, please keep the family of the sweet and beautiful Christi Thomas in your prayers as they near the anniversary (unniversary!) of her death. She was such a great kid and touched many hearts.

Thursday, September 6, 2007 1:44 PM CDT

Well, we made it through the first day of school. It wasn't easy though.

We went to the practice bus ride together on Tuesday. Just my luck, there is an adorable pair of twin girls who will be getting on at the same stop. So just in case I managed to actually forget that I should be there with two kids instead of one, I will have that daily reminder. It's OK though.... I really don't forget. Zachary was pretty quite on the bus, and for meeting his new teacher, Mrs. Baldwin. But he managed to smile and pose for a photo with her, and overall was on his best behavior. We spent some time at the playground, and Zachary had a great time at Ninjutsu class. Yesterday, I watched Zachary get on the bus by himself for the first time. I got it on video, but I was borrowing Fritz's camera and I didn't realize that while it has a video feature, there is no sound! So it is a silent movie of Zach getting on the bus. After the bus left, I drove over to the school to watch him get off the bus and go into class. He went with no trouble, and little fuss. He was happy to have his friend Sean sitting with him on the bus, and later at lunch... they are in different classes though.

I didn't do much yesterday, a workout at the gym and printing some photos was all I managed. I went to pick Zach up at the busstop, and he was right on time. There is an advantage to being the first stop! We went straight to Ninjutsu class as I wasn't sure how long it would take to get there with all the school busses and traffic. Afterwards, Zach went to my mom's and we went swimming (indoors!) for a bit with his friend A.J.

I asked Zachary how he liked school, and I'm sorry to say, it seems he didn't. I don't know how truthful this is. He seemed to do fine. I got back the work he did in class, and it looks as if he participated. I was worried about whether or not I should tell the teacher about Kendall. But she sent home a "Getting to Know You" form for us to fill out. One of the questions was "Are there any problems or issues you would like me to be aware of?" (or something like that). So I just wrote it in there. I thought it was great she did this.

Today I went to work, and we went over everything from Saturday. Now I'm just drained. I came home and decided to upload the photos. I also put up some old ones of Kendall. He was such a bright and beautiful boy. It just kills me he didn't get a chance to go to Kindergarten. I know he would have been absolutly skipping down the street all excited to tell me about how great it was. He was so full of enthusiam for everything. I just know he would have loved it. OK, enough for now.

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Please keep James Runde and his family in your prayers. He has a new website now which is easier to update.

Friday, August 31, 2007 8:50 AM CDT

Well, I started my new job yesterday. I didn't expect to be there as long as I was, but what started out as a short orientation ended up with me staying until closing, nine hours later! That was OK though, I'm glad I got a chance to see the closing procedures, and I did take a lunch break at one point. The other two staff members I met were really nice. Debbie is a medial assistant, and looking forward to doing more assisting and billing once I am trained. Helene is a nurse, but really does quite a bit of the office and clerical work as well (also apparently quite a bit of the housekeeping!). They are both very nice and we got along well. I have no problem with the work. I picked up the system quickly as it is all basically writen down. Being a millitary man, my new boss is very detail oriented and organized. He has manuals and procedures for everything. This is good for me right now, as I do better in a structured environment. I simply do not have the energy to be creative and responsible right now. Maybe next year, but for now this will do.

Anyway, Zachary got to spend some extra time with his grandparents this week. On Tuesday we went swimming there. It was such a beautiful day, and all the kids were out! Wednesday he went fishing again with them. Again, caught nothing, but he has not been deterred!. Maybe next time. And a few hours on Thursday morning, turned into an all-day thing. When I went to pick him up at 6:30, he was fast asleep! Apparently his grandparents managed to wear him out. He eventually woke up and ate dinner with us, then played StarWars with Neil while I passed out! It's OK though.

School is starting next week and I feel like I'm walking through molasses. I am just trying to keep my spirits up, but it is getting harder. It seems so wrong that only one of my children is enrolled in school! I changed the photos on the page. The slide show is from Zachary and Kendall's first day at the Morgan Center last year. They loved to roll down the hill outside the school. They got the whole class doing it sometimes! There was such a joy of life and a strength of spirit in him.

I went home at lunchtime yesterday and while I was eating my salad I was looking at some of these old photos and asking God for guidance. I was hoping I was heading in the right direction. The last few days had been tough. Besides the usual level of grief and sadness, something else was bothering me. On Monday I went as usual to place flowers on Kendall's grave, only to find it covered in ugly plywood! They had opened the grave next to his, the site I often sat (thinking this was the plot Neil and I had bought) and wished I could just crawl into the ground next to him. I must have been quite a site standing there staring with my mouth open at a neatly-arranged ramp of plywood with my flowers, holder, water, and scissors dangling from my hands. It was such a surreal thing. The noise of some cars made me move finally, and I walked over to where my mom's flowers and my old ones had been moved aside to make room for the wood. Kendall's entire site was covered, but cleaned up the flowers as best I could. I took the plant that my mom had planted in one of the holders (it had fallen out, and threw that away. Then I pulled the dead flowers out of another holder, and re-arranged the rest. There were some silk flowers from my mom as well (though they frown on these there). And I took the turtle she left for Kendall and brought it back to her. I figured they would probably take it the next day when the arranged for the funeral. So I neatened everything and put them as close to Kendall's site as I could, then I left, taking my flowers with me. Now, the next day, I was expecting the funeral to be done and the grave to be back to normal. But it wasn't. Zachary wanted to come see (he heard me talking to mom about it and later to Cindy). He wanted to see the wood and the hole. I figured by this point he is already scarred for life, so no harm in taking him. He was fascinated by the whole thing for about ten seconds, then he went and tried to climb the tree again. This time I put my flowers with the others and re-arranged them as neatly as possible. The next day, finally, I went back and the wood was gone. The new grave was covered in flowers, and Kendall's flowers had been neatly arranged near his marker again.

Anyway, I was thinking about all of this as I went back out to my car to return from lunch. Right by the door of my car was another unusual feather! This was from a fairly large bird and look to be a wing feather. My best attempts at identification are that it is from either a Canadian Goose or a Turkey Vulure. The geese are fairly common here, though I wouldn't expect to see one so close to my house, there are no lakes or ponds nearby. They do occaisionally fly overhead on their way to wetter grounds though. They are VERY common at the cemetary, and I see them there all the time. The turkey vultures are not as common, but they are summer residents of NY and they have a few at Holtsville park. It was one of the Kendall's and Zachary's favorite animals to visit there, just below the bears in popularity. What is stumping me is that I don't see the waxy layer that you would expect with a goose. But this feather is beautiful, and will be added to my collection. It made me feel a bit better as I returned to my job.

Anyway, it is another beautiful day, and I will try to get outside a bit now. Please keep the family of David Salerno in your prayers. He lost his six-year battle with melanoma at age 53. He leaves behind a devoted wife and three beautiful daughters.

Tuesday, August 28, 2007 10:48 PM CDT

Mostly I logged on tonight to remove the photo of the grave marker. It was just bothering me. If anyone wants to see it still, you can view the photos here.

Anyway, we had a pretty uneventful Sunday. I went to church and enjoyed our new intern's first mass. Vicar Flora talked about the role of women in the scriptures. She brought up a lot of interesting points. I'll look forward to hearing more from her throughout the year. Later, Neil, Zachary and I went to the church's great Steak Out (their annual barbecue). It was a nice afternoon, but I was still feeling a bit worn from all the activity of the day before (thanks Cindy!), so we ended up having to leave a bit early. I all but passed out on the couch as soon as we got home. Unfortunately, I woke up a bit, and was flipping the channels (Neil and Zach were locked in an exciting game of Lego Star Wars on some sort of canister hunt). I decided to watch what seemed to me to be a fairly benign movie, "The Sisterhood of the Traveling Pants". The description of the movie seemed pretty innocuous: "Four best girlfriends hatch a plan to stay connected with one another as their lives start off in different directions: they pass around a pair of secondhand jeans that fits each of their bodies perfectly." Surely this would be a light-hearted movie I thought. Surely there would be nothing that I could possibly relate to... I have never had a pair of jeans fit me perfectly. I swear movies like this should come with some sort of warning label!!!!! I ended up crying throughout the whole thing. Each one of those girls had a story that reminded me of something in my past or present and the whole thing was an emotional nightmare! You had one girl who went to Greece and fell in love with a guy her family hated and couldn't accept. Ugh! You had the girl who visited her divorced father to find out he was planning on remarrying and had a whole new family life that she felt totally left out of OUCH!!!!!! I'll admit I didn't have much in common with the athletic one who seduced her coach, but the last one was the one that just broke my heart. She was the girl who stayed home to do a documentary movie. She ended up meeting a little girl with leukemia. It was absolutly torture. I can't even explain it. Yet I couldn't seem to turn the channel. I guess I needed a good cry, or two, or four. Unbelievable how easy it is to be blindsided by grief. This does happen to me quite a lot. I'm afraid to turn on the radio or flip channels on the TV anymore!


Zachary has been enjoying a couple of really nice days weather wise. He spent yesterday and today in the pool at Nonni and Poppi's house. We are getting ready for school starting next week already! I just got his bus schedule and classroom list and everything. I am trying to have a positive attitude about it, but I'm pretty sure he senses my sorrow as well. I just want to get the whole first day over with now.

The second photo above was Zachary and Kendall at the Brookhaven Country Fair at Longwood Estate last year. They had such a great time. I was just looking through those photos and smiling because Kendall looked so very healthy then. It was great to be out and no one knew he had cancer. He was laughing and playing with the other kids, and no one would have suspected. But it wasn't long after that when we got the horrible news that he had indeed progressed for the first time. I wanted to hold a lemonade stand in his honor this year at the fair, but the dates won't work for us. I have a party I have to go to out of state on the 8th, and the 9th is Rally Day for our Church's Sunday School. Also, with the school year just starting and me feeling emotionally fragile, I just don't really have it in me to plan it. But if anyone has any ideas on where to hold the stand, I'll come and set up and do the rest. I have a table, tent, lemonade, cups and napkins. I just need a place to set up shop.

Anyway, a few fundraisers I would like you to consider. My dear friend from CHOP, Mara Stiles, mother of the lovely Angel Laura, will be participating in the Parkway Run/Walk to benefit children's cancer on September 30th. The money goes to CHOP. I very much would like to be there, but I am torn. Stonybrook is having a day of rememberance for the children who died on that same day. Part of me doesn't want to go, but a bigger part of me does. I still may change my mind. But assuming I don't, please give Mara some support. The fundraising site is: Friends of Laura Stiles. Her website is: Laura Stiles

Also, another friend, Maria Rella, will be walking for the Juvenile Diabetes Research Foundation on September 16th. Juvenile diabetes affects over 3 million Americans, most of them starting in childhood. There is currently no cure, and there is the constant threat of deadly and/or debilitating complications. It is another one of those horrible, devastating diseases that I'd like to see eradicated in my lifetime. So show her some support as well. Her fundraising page is: Joseph's Fight.

I start my new job this week, and may actually have some money to contribute to these worthy causes soon! I am mildy excited and a bit nervous about going back to work.

Please keep James Runde and his family in your prayers. Sadly, I found out another brave warrior just earned her wings. Please keep the family of Lillie Boyte in your prayers.


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GRATEFULNESS: A Source of Strength

by Dietrich Bonhoeffer

First: Nothing can console us when we lose a beloved person and no one should try. We have to simply bear and survive it. That sounds hard but is in fact a great consolation: When the hole remains unfilled, we remain connected through it. It is wrong to say that God fills the gap, because he keeps it empty and so helps us to sustain our old communion, even through pain.

Then: The more beautiful and fulfilling our memories, the harder the separation. But gratefulness transforms the agony of memory into a quiet joy. We should avoid burrowing in our memories, just as we do not look at a precious gift continuously. Rather, we should rather save them for special hours, like a hidden treasure of which we are certain. Then a pervading joy and strength will flow from the past.

(Translation into English by Karin Murad)

Sunday, August 26, 2007 7:23 AM CDT

Isn't it just great when you suddenly find something special you didn't even know you had? The top photo came from a disposable camera I found in the bottom of a bag in my closet. I couldn't remember where it came from, but Kendall's name was on a sticker on the bottom of the camera. Once I saw the photos, I remembered immediately. We had gone to Make A Wish's annual Holiday Party at Lombardi's in Holtzville last year. I can't say we had a good time, because the boys were just too scared and overwhelmed to enjoy it. It was very very crowded and loud. It was certainly a wonderful party and there were lots of characters and activities, but my boys were just too scared and we finally gave up and had to leave. They just weren't used to all those strange people and loud noises. We did get our family photo with Santa, but you can see the fear on their faces even then. Anyway, each family was given a disposable camera and I let the boys share it as I had my own digital with me (that was before I broke it... then broke it again, ugh!). Zachary took the above photo of Kendall, and got a few lovely pictures of the people at our table... who we did not know! If anyone knows who was at table 49 last year, I have photos of your family and would be happy to share them with you! I can tell the photos Kendall took, because they were all moving, or of things like, his plate, Neil's arm, or the sign with the table number! It was just the way he was. I will still treasure those photos as they bring back memories of a great time. Even though the boys were scared, it was a great day to be out together as a family, and the food was fantastic.

Anyway, I made it through the kindergarten orientation, but it was tough. I had tears running down my face through most of the speeches. I'm sure the other parents nearby just thought I was some sort of nutjob! I just kept thinking about how much Kendall wanted to go there. We used to take the boys to the kindergarten playground sometimes because it was a nice enclosed area to play and when school was out, it was usually empty. We'd fly kites in the big field next to the school. Kendall couldn't wait to get to go there himself. It just isn't fair that he never got the chance. Anyway, Zachary is looking forward to going, and to making some new friends.

Kindergarten is full day in my district, and it goes from 9:10 to 3:45, a long day! I also signed him up for the before care program. We will need it a couple of days a week because, I got a job! Yes, I finally found someone willing to hire a tired, broken, depressed medical secretary with a lot of experience with pain. It is a family medicine practice about ten minutes from my house. The owner has been in business for over twenty years and is starting to cut down now. It isn't exactly the job I wanted, but it pays well and the hours are good for me. I'll only be working two-and-a-half days during the week and a half day on Saturday, and I'll be home in time to get Zachary at the bus stop each day, which was important to me. Neil will probably drop him off in the morning so it won't have to be too early, but on the days he can't do it, I can drop him off at 7:00 am and still make it to work on time. So it is a good job for me right now.

Yesterday we had a great time at the birthday party for Cindy's kids Sean and Andrew. She was the one who organized that wonderful fundraiser for my family back in May. It was the money from that fundraiser that allowed me to leave my job officially and spend this great summer with Zachary. He really needed it too I think (OK, so did I!). We can't ever possibly thank her enough. She has been a good friend since then too. It is funny, I never knew her before the fundrasier. She was a member of my church and during our last hospitalization, she found out about us and decided that the Church should do something to help our family. Please keep Cindy and her lovely family in your prayers as well, as they are also going through a difficult time with the loss of her father (the children's grandfather). Even through all of that grief, she still tries to get out and help others. I don't want to give too many details right now, because the plans are all not set yet, but she is working on a fundraiser for pediatric cancer in March too! I just know it will be a big success. Anway, she invited us out to her brother's house in the Hamptons for a birthday pool party to celebrate her children's birthdays. We had a great time. What a nice family. There was a big inground pool, and even though the water was cold (we've had a lot of cold weather this week, but it was nice yesterday), Zachary spent most of the day in it! He showed off his great swimming skills, swimming all around and jumping off into the deep end. Luckily, he is a good swimmer now so there was no reason for me to go in the frigid water! There were plenty of children for him to swim with, including some older girls who kept a close watch on the little ones. They also had a nice big yard to run around in, and a trampoline! Zachary spent hours bouncing around that with the other kids. Miraculously, no one was injured, considering how many children were there and how much they were running and jumping around! Zach didn't want to leave he was having such a great time, but we eventually drove home through the thick fog, and he promptly fell fast asleep on the couch while watching a movie with Neil.

Please keep James Runde and his family in your prayers. He is still feeling pretty well right now, but his disease has grown out of control. Also, Katie Krize just had her MIBG treatment, so please pray that this works for her and gives her a long remission. Austin is just starting out on a new protocol, so keep him in your prayers as well.

Thank you all for continuing to check up on my family. It really does help.

Thursday, August 23, 2007 8:08 AM CDT

Yesterday I went to the cemetary after my platelet donation, and was a bit shocked to see the new marker in place. It was such an odd feeling. I was thinking of Carter and his family, who are just burying their little boy that day. I decided this platelet donation was for him and prayed for peace and comfort for his family. Then I go to the cemetary, and there is my son's name on a grave marker. It was such a surreal feeling.

Something light in color on the green grass near the tree caught my eye. After I arranged my flowers and took some photos with my phone, I said a little prayer for Kendall, and thanked God again for the time I had with him. I got up and went to what I thought was a piece of paper on the ground, but it was a feather..... a Red-tailed hawk feather to be exact. It was so beautiful and perfect. We are part Native American on both sides of the family, and feathers from Eagles and Hawks are very symbolic to the Native American people. A description from another website:


"Feathers mean a lot to Native American Tribes. A feather isn’t just something that falls out of a bird, it means much more. The feather symbolizes trust, honor, strength, wisdom, power, freedom and many more things. To be given one of these is to be hand picked out of the rest of the men in the tribe - it’s like getting a gift from a high official."

Hawks and Eagles were highly regarded. It was felt they carried messages from the spirit world and were particularly close to the Great Father because they flew so high. I got this from another website about animal symbols:

"HAWK - is the messenger. IT is also about visionary power and guardianship, the hawk is very protective of the young in its nest. It teaches us about providing for family and self. Hawk teaches us to be observant and to pay attention to what we may overlook. This could mean a talent we don't use, a blessing for which we haven't expressed gratitude, or a message from Spirit. The hawk has keen eyesight, it is about opening our eyes and seeing that which is there to guide us. "

Many will notice the frog on Kendall's grave marker. It was actually a bit difficult to find one. There were no frogs in the book from the plaque maker. But we called them and they were able to find us a few frog decals and fax them over. The one we picked looked so much like Kendall's little cuddle frog that he caried with him. Something about the way it is just laying there on its side and smiling reminds me of Kendall. I just knew it was the right one. Kendall loved that frog from the first day. He usually had it nearby. During his first surgery, at only about four months old, Neil amused him with a hand puppet of a frog that he found in the gift shop at Winthrop. He called this one "Alfredo". I often used Alfredo to distract Kendall during unpleasant procedures like blood draws and accessing. There were lots of other frogs in his life. I never really thought about the symbolism of frogs until now though. He just seemed to gravitate towards them. In some cultures, the frog has negative connotations (note that it was one of the plagues in Egypt). But I have found several that see the frog in a more beneficial light. Here is the best description:

"FROG - bring healing. As water cleanses the arid earth and returns life to it so Frog's medicine can wash away any physical and mental energies which deprive us of harmony and peace, and helps to replenish our own ability to heal ourselves on all levels. It is a symbol of recognizing one's own power, of adaptation and using sound and nature to make changes in our life."

Anyway, enough of my spiritual ramblings. I am sure the feather was sent to comfort me (or distract me from my grief... you pick) in some way. I have never before found a hawk's feather. Not in 40 years. Many feathers from pigeons, seaguls, geese, and smaller birds, yes, but I can't remember ever having a hawk feather. I will display it in some way.

Last week Zach and I returned to Sesame Place with my sister-in-law Liz, my nephews Andrew and Alex, and Liz's sister Anne and two of her cuties Lexi and Jake. We all had a great time! Zachary really took to Anne's kids. The littler ones were a bit intimidated at first, and didn't go on a lot of the rides, but the rest of us went on quite a few. It was hard at times because I just missed Kendall being there so much. We had such a wonderful time last year there. He made me ride that roller coaster over and over. It was the first "big" coaster that Kendall was big enough to go on. He loved it. And I remember him in the sand pit with the punching bags (monsters) yelling out "I push the monsters away!" and "I'll get you monsters!" over and over and him just laughing with glee. It is so hard. But mostly I put that out of my mind and enjoyed the day.

On Wednesday we had the family day for Sunrise DayCamp. This was a great party! Zachary had a ball playing all the games. He got a chance to try out the new Nintendo Wii, and I think that will be high on his Christmas list this year! It was very bittersweet though. I missed Kendall so very much. At one point they showed photos from last year's party, and I saw several of Kendall dancing and smiling. I was so happy to see them and Michele promised to try to get me a copy of them. I was watching intently for more photos, when Arnie came up to ask how I was doing. I guess I wasn't prepared for how emotional I was, because I just burst into tears and ran out of the building! I calmed down after a bit (thank God Neil was with Zachary playing a video game or something) and returned to the party. But really, I was glad they showed those photos. As I said, I may cry sometimes, but I love to see photos and videos of Kendall. I love to hear his name. Until you have lost a child it is hard to explain. I never really understood it before. But when you tell someone you had a child who died, it often sucks the life right out of the conversation. They don't know what to say and stammer apologies and change the subject to avoid an uncomfortable moment. I know it is hard on everyone, but believe me, you cannot make me cry or make me sad. I do that on my own. No matter how happy and content I seem, there is always that sadness and loss hovering just below the surface. It comes out sometimes. If you happen to be near (rare!) then I hope you will just accept that it was time for me to cry again and it won't last long. Don't feel bad about it. I recover quickly and always feel better afterwards. I also do not get upset when people accidently mention Kendall's name when meaning to speak about Zachary. He is always with us and always a part of him, and I think sometimes he just comes out a bit louder. It is OK.

Anyway, it was hard because I was just thinking that I may not send Zach to any more Sunrise camping days. I just don't know what to do about it. They told me we would always be welcome as a Sunrise family, but I don't want to take up space that could be for someone in active treatment (I was told this was not at all a problem, they can handle quite a few more children then they have and Zach is no problem). It is a tough choice though. On the one hand, Zachary enjoys his time there and loves the counselors and other children. On the other hand, I don't know if it is so healthy for him to continue to go. It brings up a lot of different emotions. When I ask, he always wants to go though. I don't need to decide right now, so I will put off such decisions.

On Saturday I took Zachary to Splish Splash. I had the group tickets from my church (we never did see anyone else there though). They were at a very reduced price. But it was COLD!!! Who could have guessed we would have such a cold August. The tickets were not refundable or exchangeable, except in the case of rain I think. The nice thing was the park was not too crowded. In the sun it wasn't bad, but the wind was frigid. It never got warmer than 75 the whole day, and mostly hovered in the low 70's and upper 60's. But we had fun. Zach loves the wave pool, and we got to go on the Hollywood Stunt Rider five or six times (a large raft ride through a dark tunnel). The line for this ride is usually at least 40minutes long, so that was really great. Later that night, we went to the Selden Fireman's Carnival with Kathy and Jessica, and he had a great time there too. So Zach had a very full day.

Anyway, the job hunt continues. I was offered a job at local doctor's office, and I may take that one. The only problem is it starts at 7:30 a.m., and I would have to see if I can arrange for an early drop-off for Zach on those day. I decide tomorrow after the orientation at the school.

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Hawks even make their way into the bible:


Job 39:26-27

26 "Does the hawk take flight by your wisdom
and spread his wings toward the south?

27 Does the eagle soar at your command
and build his nest on high?"

Monday, August 20, 2007 1:56 PM CDT

I have sad news of another NB angel to share with you. I'll update on our very busy week with some new photos later or tomorrow.

Carter McKenzie Finger passed away on Saturday, August 18th, surounded by his loving family. He was a truely brave, sweet and wonderful young boy of not yet nine years old. He fought neuroblastoma for almost five years and has defintely earned his Angel Wings. The above photo was when we first met them. I had been following Carter's story through his mom's updates on our NB list, and his caringbridge site. When we got to radiology for our first test ever at CHOP, they were the first people I saw. It was so comforting to see a familiar face. They were very kind to me and Kendall and Zachary. Carter often had friends with him on his trips to CHOP, but he always let my boys play with them too, even though they were quite a bit older. Zachary remembered him as soon as he saw his photo even though it was over a year since he'd seen him. He said, "That's the boy who taught me to play the fighting video game!". Yes, Carter shared his Mortal Combat game with Zach.... and helped develop a love of violent video games in him. This was a great outlet for them. Zachary needed something just like that to help get some of that anger and frustration out. He was really a very special boy, and his mom was just so strong, and faithful, and frustrated too! I always admired her ability to talk to Carter about difficult things, and her ability to bear the unbearable with grace and courage. But she would tell you, it isn't about her. Carter also has a lovely older sister who was also so very nice to my boys. I never had a chance to meet his father, but I pray for him as well. Please keep Carter's family in your prayers. As sure as Carter's suffering has now ended, his families has only begun. There is truly nothing worse than loosing a child when it comes to heartbreaking pain. Carter has many friends who will welcome him with open arms into Heaven. I wish it wasn't so.

Friday, August 10, 2007 10:47 PM CDT

Please keep Carter Finger and his sweet family in your prayers, and please add some for James Runde and his family. They just got devastating news that they are also out of options, and had to have that difficult talk about moving to hospice care with the doctors.

We've had a busy week. On Thursday, Zachary went fishing with his grandfather and some friends. They didn't catch any fish, but he apparently caught a crab and a snail! He had a great time and can't wait to go again. Next time they will bring better hooks!

Zachary went to Sunrise Daycamp the other days this week, and apparently they are really doing a great job with the swimming lessons. He went from barely doing a doggy paddle, to back stroke, breast stroke and a very sloppy crawl in just a couple of weeks. He is very comfortable in the water now, and loves to do flips and is starting to learn to dive a bit too. He was a bit upset today because it rained, and not only did they not go in the pool, but it was raining too hard to take them to the game room either! We originally planned on going to a movie with friends after camp today, but my friend is not feeling well and we rescheduled. So I took Zach to Chuck E. Cheese instead. This gave him his video game fix.

I went on two interviews this week. One was at a new Physical Med and Rehab facility, that is going to open in a few weeks. The doctor was very nice, and I think we got along well. I wouldn't mind working there, but it is always taking a chance with a new business. The other interview was at Stony Brook. Yes, the hospital. Yes, the one where I spent the last two months of Kendall's life, and where he ultimately died. I can't believe I actually put on a suit, and went into that building and went for a job interview. When I applied for the job months ago, I thought it was to be at the Tech Park where their ophthalmology office is located. But apparently the secretaries work from the hospital. Still, I did it, and I was OK. It was a bit of a shock just seeing the building, and walking up that hall with the photos I almost ran back out to the car. Kendall loved those photos, that decorate the main hallway. Back before they moved his clinic and the ambulatory surgery suite, I spent a lot of time distracting Kendall by walking him back and fourth up that hall and having him tell me what he sees in the picture. It was always something funny, like "That is a puppy eating a boy" (A picture of a puppy licking a little boy). Or "American Cat" (A cat under the American Flag). Or "Very fast Cheetah". "Herron eating a fish". He just had a very literal mind, and sometimes his interpretations of the photos were really cute. I wish I had written some of this down or recorded it. But I never really believed Kendall was going to die back then. I still don't believe it sometimes.

Anyway, I made it through the interview. They even tested me out on their equipment a bit. However, I don't think I want this job even if they offer it to me. It doesn't pay enough for the hours they want. I am really looking for part time. Next week I have another interview at StonyBrook, and this would be for a part-time administrative assistant. The hours would be perfect for me! I've thought over and over about whether I could work at StonyBrook or not. I think I can. I always felt very comfortable there. I think because I worked in a large hospital for so long, I am just very used to being in hospitals. Even though Kendall died there, we had a lot of memories there, they were mostly good memories. It doesn't matter where I am, Kendall is always with me. He is always in my mind. I don't need a particular buidling to start to miss him. I miss him when I wake up, and when I go to sleep, and every hour in between. I am very good at controlling my emotions most of the time, and I save my breakdowns for times when I am alone.

I believe Kendall, or maybe God, sent me some people to comfort me. During my walk into the hospital to my interview, I met no one I knew. I was glad of that as I think I would have been very flustered. On the way out, I first ran into Sister Lynn. She is the Chaplin for pediatrics, and spent a lot of time with us. She was always a great comfort to me, and tried so hard to find ways to help. I was happy to see her, and had a chance to thank her for the beautiful memory box she made for me. She had many of the doctors and nurses write little cards and put them in the box. It was so beautiful. I use this box to also hold the physical signs I get from Kendall, so that I can remember them. I only a couple of minutes to speak with her, as I was already running late for my platelet donation appointment which was up the road from the hospital. I left there, and while I was waiting for the valet to bring my car, who did I run into? Darla! She was the psycholgist for oncology, and visited me almost every day I was there. She often brought things to help brighten our day (tea, coffee, treats for Kendall). She was there at the end too, and walked me and Neil to our car. That was the hardest walk I ever had to make. She was always so kind to us. It was really good to see her too, if only for a minute.

By this time, I was too late for my platelet appointment. None of the other upcoming days worked with my schedule, so I decided to donate whole blood instead while I was there. This is much less complicated and takes only a few minutes. So I saved at least two, maybe three lives this week. Go out and do likewise. You can find out where to donate in your area by following the link: New York Blood Center. Each day, they need about 2000 people to donate blood. Each pint of blood can be used to save serval lives. Platelet donation takes a little longer, but it is vital to people on chemotherapy.

Tuesday, August 7, 2007 10:28 PM CDT

The opening photo was from our Trip to Washington D.C. to the Candelighter's Childhood Cancer tree. Kendall was a bit overwhelmed by the large crowd and noise.... Zachary was a ham as usual! You can see Kendall is clutching his little green Mr. Cuddle Frog (also knwon as "Goldberg") in one hand, and a small beanie baby bear in the other. You can see the ribbons behind the boys... just a few of the all too many that decorate that tree each year. Each one representing a child with cancer. It was there that we met Alex Scott's family and listened to her brother read her story. The boys were very touched by the whole thing. We had a really great time on that trip.... except for the drive! Even that I miss. I never thought I'd miss the sound of children fighting and screaming in the car, and that ever-annoying, "Are we there yet?!".

On a happier note, we had a great time at the Duck's game last night. Thank you to Rod and Nancy from the Morgan Center for encouraging us to go. Even though the Duck's lost, it was still fun. For anyone who hasn't had a chance to go, Citibank Park is really very nice. We got to sit in one of the Pavillion Suites. Each suite has an air-condition room with a glass wall overlooking the game, couches, and cable TV, and an outdoor seating section with a great view of the game. They have a caterer, and there was enough food to fatten up a small country! Zachary didn't watch much of the game, but he had fun with his friends. He particularly liked running around the bases at the end. They let the kids do this after each game, and it was very exciting. Kendall was with us in spirit that night too. I really wish I had gone to one of these games when he was alive. He'd have loved it. I really didn't even have a reason not to go, except that I thought they'd be bored and were too young. Anyway, I couldn't help but have him on my mind.

I am updating the opening on the webpage with some statistics from Mark Dungan...father of Sydney and founder of the Lunch for Life organization. That is our annual email campaign to raise money specifically for neuroblastoma research (you'll be getting those emails sometime in December I think!). These statistics are appalling, and I want to see some changes made. One easy way to help, for those who haven't done so yet, is to write a letter to your representatives and ask them to support The Conquer Childhood Cancer Act 2007 (H.R. 1553). You can click on this link to Curesearch. Enter in your zip code and they will get you your contact information on your senators and representatives. There are form letters there you can use to let them know how you feel.

Please continue to pray for Carter Finger. It is heartbreaking to read his mother's words, and her anguish at knowing her wonderful son is going to die soon and there is nothing more she can do about it. So far, he is still fairly comfortable, but he is getting weaker by the day. There are way too many "Carter's" out there to name. It is something no parent should have to go through. I still can't believe I have been through this too. I still sometimes can't believe Kendall is really gone. It just doesn't seem right.

Friday, August 3, 2007 11:17 PM CDT

As you can see, I updated the photos finally! The opening one is of Kendall at the Philly RMH. I sure do miss my trips there. I don't miss the medical stuff, but I miss the people and the house itself. It was so beautiful there. They really just cared for you like family. You can see I finally put up a slide show of Zach getting his white belt! Very cool. I'll upload some photos of Nicholas from his birthday later in the week. Cute stuff.

Zach had a good week at Camp Hope... though he was a bit cranky from time to time. He had a couple of days where he just didn't sleep well. But he seems better now. On Thurday we had his friends Sean and Andrew, and their sweet mother Cindy, come swimming with us at my mom's. She is feeling better... thank you! We had a great time. I spent a good deal of the time looking for a job. I made quite a few calls and sent out a bunch of resumes. I have some interviews lined up for next week so we will see how it goes. I did give platelets on Wednesday, and I figured while I was there I would make an appointment for next week too. Platelets can be donated every three days if you want! While Zach is in camp and I am not working it is a good time for me to catch up with my donations. Once a week for few weeks wont hurt.

Those who know me well, know I never win anything. I have little luck with raffles. I think in my life I have only one two or three prizes (when you consider how many raffle tickets I have brought this is pitiful!). One was a resturant gift certificate ... and one a huge stuffed bunny (no, I didn't have kids at the time). Now, at that StonyBrook Children's Health Expo they gave everyone two raffle tickets (no cost). I put one in the bag for some free games at the bowling alley.... and won! Kendall and Zach and I enjoyed our few bowling trips together. I was always hoping we'd get to go more often. My dad and Neil's mom (both passed away) were avid bowlers. I was very excited and right away decided I would take Cindy and her family with us. They have just been so kind to us. I'll probably see if we can go next week. So I was very happy about that. But the other day I get a strange phone call. It was from the people at Stony Brook again! I had put my other ticket into a bag for a prize of a one month membership at one of the local gyms (I think it was World Gym). I didn't win that, but they called to tell me I won a "consolation prize"! Apparently, they had a few extra three-month memberships to Ladies Workout Express. So they went back into the bags of those who choose gym memberships, and mine was one of the ones they picked! This is unbelievable! I wanted to join that place when it was by my job, but I was planning on looking for a new job and I didn't know how long I'd be in the area (this was during Kendall's "remission"). They wouldn't give me a short-term membership (nothing less than one year), and told me I couldn't transfer it to one near my house in case I leave work. So I didn't join them. I was very dissaponted, but I joined another local gym instead. So now to get a free three-months... well it is a huge coincidence! I mean, the Expo was a few weeks ago... and the just called me out of the blue. I had just been talking to Neil earlier that day about how when I get a job the first thing I was doing was joining a gym! Because diet alone just doens't work for me and I am not very disciplined about working out at home (I did manage to lose 20 lbs, but still have a long ways to go). So I am just blown away by this. The fact that it was a StonyBrook event is not escaping my attention. But the people who organized the event didn't know me and never heard of me. They work over in the Tech Park .... not at the hospital. I swear this is somehow Kendall's work again. Or at least it is kind of nice to think so. The boys sure loved coming with me and hanging out at the playroom at the gym when they could. When Kendall relapsed and I had to stop taking him, he was so upset. Funny thing is, one of the ladies who used to work in that playroom brings her children to Zachary's Ninjutsu classes! She also attends the classes, and I was thinking once I am a bit more fit I will join there too (ummm.... after I get a job of course!).

So that is about it. I am too tired to type in links, and I don't feel like looking for the file... but please keep Carter, Austin and both Katie's in your prayers. Also, I hate to add another, but the truly inspirational Erik has show disease progression again. He went off treatment four months ago, and has really been enjoying himself. I am so saddened that he has to go back on the harsh meds again. You can read about his rather unusual journey on his website. He is also from Minnasota, and has to now contend with his trips to the hospital without the bridge! I am just amazed after looking at the wreckage that more people weren't killed. Definitely some Divine intervention there! Also, little Jackie is finishing her LAST round of chemo (hopefully forever!) this week at CHOP. She has had a tough time of every single round... with tons of complications, so I hope this one will go easy on her. Her website is private so I will not link to it.

These children (and young adults) endure so much, and so much of it goes completely unnoticed. I went through 38 years having not a clue about childhood cancer. I guess no one likes to think about it. Now it is all I think of sometimes. Even little everyday decisions, (like should I tell the lady at the Gym about Kendall...do I mention him on a job interview...should I go to the cemetary today), can be so hard. But I get through it OK for the most part. I miss him though. That is really an understatement. No matter what is happening on the outside.... inside I just miss my baby.

Monday, July 30, 2007 4:05 PM CDT

Not long after I wrote the addendum to yesterday's update, requesting prayers for Nathan, Austin and Carter, Nathan Gentry died. I don't normally write before I leave for church in the mornings, but I felt compelled to do so yesterday. I think Kendall was letting me know Nathan was with him now too. You can leave his family messages of sympathy and support by signing their guestbook.

I also wanted to add to other warriors to my prayer list. Our little Austrailian friend, Kaitlyn has relapsed. It seems as if her life was finally settling down to normal, and now is getting turned upside down again. They are also worried about some news on her new little sister-to-be. Her mom, Colleen, was the kind person who designed Kendall's website for me. Gratis. She is such a sweetheart, and I know she is stressed to the max right now. She also put together a link page for other children with cancer. Katie Krize from South Carolina could use some prayers and support too. She recently progressed on her treatment, and is getting ready to start MIBG therapy. She'll be going in for scans this week. Austin is still waiting for a plan to be worked out, and Carter is still holding his own for now.


In home news, we are doing OK. Zachary started Camp Hope at our church today, and had a great time. He was thrilled to play with Sean and Andrew. I spent the day chatting with their mom Cindy. Neither one of us is going to accomplish anything this way!!! But it was nice really. I so seldom let myself just do nothing. My house is still a wreck from the weekend though, so tomorrow... I'm cracking down!

I had a great time going out dancing with my friends on Saturday. I know I was a bit reluctant to go.... but I'm glad I did. Happy birthday to Linda and Beth, and thanks for a great idea to get the girls all out and having some fun. It has been twenty years since I've been to a club in Manhattan!!!! On the bright side.. the club was a retro one playing 80's dance music... so the music was the same as the last time I went out! Culture club also has an upstairs called Nervana.. which plays 90's dance music. I did used to go to a club in Delhi when I was in college, but that was because there was litterally nothing else to do there but watch the icicles drip! The evening made me nostaligic though, and I think I'll take some time tomorrow and call my old roomie Michelle down in Tennessee. I wish I had the money to fly down there for a visit. I'm sure they have some rootin' tootin' dance clubs there too. I may just give up on my idea of going to the gym and start clubbing on the weekends!

So this week should be pretty quiet. I'll be donating platelets on Wednesday at the Port Jeff donor center, so this is as good a time as any to remind you all to please consider donating blood. It doesn't take long (platelets takes a bit longer), and doesn't hurt that much. People with cancer need blood and blood products to survive. There are plenty of drives around, or you can go to your nearest blood center or hospital blood bank to donate. No excuses! Here's the link to New York Blood Center has a list of drives and centers on their site.... and all the information you need.

Sunday, July 29, 2007 10:51 AM CDT

I've been so self-absorbed lately, I forgot to mention that a few of our friends could use your prayers as well. Carter Finger, who we met in CHOP, is going onto hospice fully now. He is such a wonderful boy with a very sweet, and devastated,family. I remember him and his sister playing with Kendall in clinic, and I'll never forget when he shared his video game with Zachary.... Unfortunately it was Mortal Combat!! This started Zachary's love of the fighting video games. Nathan Gentry is also on hospice and doing poorly. We have never met, but his mom is a member contributer to my online support group, and I've been following his story for a long time. Lastly, for now, Austin Melgar's family just got devastating news of progression. I have never met him either, but he is another wonderful boy who has been fighting hard for a long time. His father is also a member of my online support group. Please keep these very precious children and their families in your prayers.

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Saturday, July 28, 2007 12:59 AM CDT

I hope to get some new photos up soon. I have to get them off my mom's camera because mine is broken again. I think it is a gonner this time. Maybe I'll see if the nice guys over at L&L camera can work their magic again. If not, I'll have to settle for disposables for a while. Cameras are just not in our budget right now!

Before anyone starts a letter-writing campaign against the Middle Country School District, I must clarify some remarks from the previous post. The clerk at the registration office was VERY NICE. She was not rude, obnoxious, or thoughtless. I re-read my previous post (a difficult thing in itself), and I think some of you were confusing my own inner thoughts for something the clerk said. She was trying to be thoughtful by telling me that they would remove Kendall from the computer so that I would not be harrassed by the school district. If his name remains, I will get letters and maybe even phone calls because he isn't registered. I certainly wouldn't want that. But it is still so hard to think of how our lives are so easily just put in and out of some computer somewhere. As if deleting him could delete his memory from our minds. She didn't say anything wrong or anything that I would construe as inappropriate.

Anyway, Zachary had a very full week. He went to Sunrise Day Camp where it is the start of Color Wars.... always fun. He is on the yellow team. Next week he will be going to Camp Hope at our church with some friends he will be starting Kindergarten with. I had a good week overall... other than the whole funeral and registering for Kindergarten thing. A couple of days I had coffee or breakfast with some of the Morgan Center moms after droping off Zach. It was nice to see them again as I have been missing them often. Then I went one day to finally return my labcoats and ID badge so that I can officially be signed out of payroll at my old job. I had a nice lunch with my former Supervisor. It was nice to see everyone, but I am sure I made the right choice to leave there. I should have probably done it sooner, but I suppose everything works out the way it does for a reason. The stress of going back there would have really been too much for me to bear. On Friday night I went to another Morgan Center Mom's house for some Margaritas and chitchat. It was a very nice evening.... thank you Michele for inviting us. We'll have to come back sometime and finish off the wine and cheesecake!

Tonight I am off to an 80's dance club in the city for a good friend's birthday. I never was one for dance clubs, but it will be nice to get out with the girls. Tomorrow, it's the Duck's game. I don't even want to think about Monday.... I think I will sleep all day!

So that is where we are right now. I'm doing OK, overall.

I did have a sign from Kendall. I was at the Home Depot to get more paint for our new office. Neil had painted the room a beautiful shade of green.... but he can't stand it.. so I was there to pick the lovely shade of blue he picked instead.... and some more primer. As I got to the parking lot.... I saw a father with triplets in a large stroller.... had to be about 14months old or so.... and another child of about 3 or so holding the stroller. I was fascinated and followed him a bit... and parked a few spaces away so I could watch him deftly maneuver all four children into his minivan, strap them all in, and fold that monstrosity of a stroller up and stow it in the back. It made me think of how proud Neil was the first time he took the boys out on his own shoping..... to Best Buy of course! We used to pass the Best Buy.. and the boys would point and say ... "That's Daddy's Store!". Or they would ask to go to "Daddy's Store" to get movies or games. He was so nervous the first time handling both children, but he did fine and was just so happy. He loved to be with his sons, especially as they got older and could play games and stuff. A wave of saddness hit me, but I pushed it away and went to get the paint. As I stepped out of the car, I looked into the back of the car next to me. I don't know why. It isn't something I often do. I was just drawn to it. In the backseat were several stuffed frogs! There was also a frog blanket, and a frog suncatcher on the window! Laying across the blanket were two Sunflowers. someone gave us Sunflowers at the Morgan Center graduation... and I had just that morning read an email from Nancy about a "sign" she saw from Kendall in the graduation photo. I'll share that with you another day when I can scan the photo in. I must have looked like a blazing idiot standing there with my mouth open staring into the back of a stranger's car! It was kind of cool though. Thankfully the car's owner didn't return.

Thank you for all the emails and guestbook entries. It is so nice that so many people still care enough to read my rambling thoughts. I'll have some new photos shortly, including the wonderful graduation photo.

Tuesday, July 24, 2007 10:27 PM CDT

I'm sorry. I'm not much in a mood to write right now and probably shouldn't. Something compels me though. Smart people would probably be well advised to skip over this journal entry and wait until I'm in a better mood.

I finally registered Zachary for Kindergarten. The clerk at the registration office looked at her little list and noticed that I was only registering one of my children. When I told her Kendall died a few months ago, she was very kind. She said she was really sorry and she would take him out of their computer system. Just like that. A few key strokes and mouse clicks will just delete him from their files. He doesn't belong there anyway.... Kendall didn't have a chance to go to Kindergarten. He didn't even get to celebrate his fifth birthday.

We did a lot over past few days. Zach got his white belt, Nicholas had his first birthday party (a grand event for a very special and beautiful little boy), and yesterday we burried Neil's Aunt Gladys. Sad though, Pastor Grant from the Community Church of East Williston (yes, I'm naming names!), where she was a member for many, many years, couldn't spare her an extra ten minutes in the rain. We were all late to her funeral because of the horrible weather. Neil was driving from over an hour away. Zachary and I drove in from over three hours away (we were in New Jersey because I took my nephews back home on Saturday). The minister had a drive of about 20 minutes. He got there, waited a few minutes, then told the funeral director that he had to "go to work" and left. How sad for him. I can't imagine what kind of work a minister has to do that is so vital that he can't give a grieving family a few extra minutes on an exceptionally rainy day. I think his "Boss" got a really bad report about him that day!

Zach went back to Sunrise Day Camp today. He was so happy to see his old friends. I can't thank the wonderful people at the Friedberg JCC enough for their kindness in allowing him to continue there. Afterwards, we went to Ninja class, but for some reason, no one else showed up. I think because it was such a nice day everyone just decided to go to the beach or park or something. Usually there is a group of between 7 and 14 children. But it was OK. Zachary enjoyed an unexpected private lesson with Sensei Vinny and Sensei Chris, who worked with him on his rolling tai sabaki (moving out of the way of an attack). They threw balls at him and had him roll out of the way in different ways. Lots of fun. They also worked on his sword technique. He always loves that.

See now I feel a bit better already. Neil and I talked a long time about Kendall, and we decided that group therapy is just not for us (or at least not for Neil). We also decided to paint the new office a different color. Neil just put the lovely green paint (that he picked out I might add) up this weekend. But he hates it. He brought home some really nice blue paint samples. We'll be re-priming this weekend. At least I didn't take the tape down yet. I'm going to find out if Home Depot will take back the unused can. Neil is watching Cars.... again. But that is the first time in over a week I think. I'm starting to see improvement.

I took some pretty purple and yellow flowers to the cemetary after the registration. When I got there, there was a small shore bird sitting on Kendall's grave. It looked at me intently, then flew away. I thought it was odd to see it. I immediately thought of the piping plovers. These were a favorite bird of Kendall's... mainly because he liked the name and thought it was funny. My mom used to take him and Zach to the Jones Beach Nature Center for classes, and they learned about the plover there. It is a protected bird. I used to take them to the Children's Museum sometimes too.... and they had a "beach" exhibit that Kendall loved.... complete with a pretend piping plover nesting area. I couldn't believe I was seeing an actual piping plover in the middle of the cemetary, far away from any water. When it was time to leave, I asked Kendall to keep sending me signs, because they help me a lot. I looked down in the grass... and there was a bare patch next to my car in the shape of an arrow. It was weird. I followed the arrow, and it pointed towards a huge flock of geese and more of those plover birds! When I got home, I looked up the birds on the internet, and realized that they were not piping plovers afterall. The birds I saw had two black bands around their necks. Therefore, the were not piping plovers, but were almost definitely killdeers... a close relative. Killdeers are shore birds too, but they are adapted to many environments and it is common to see them in fields and meadows.... and cemetaries.

As I left the cemetary, I turned on the radio, and the first song I heard was "Breathe" by Pink Floyd. It was just at the part when the lyrics start. Now I listen to WBAB, and they probably play Pink Floyd at least once every hour or so, so it wasn't all that unusal (it's been a long time since I heard that song though). So you can decide for yourself.... signs from Kendall... or just a coincidence. Doesn't matter though. Somehow, it made me feel better anyway. Just a little. Enough so I could straighten up the living room, vacuum, and even make dinner. Now THAT's a miracle.

Thursday, July 19, 2007 11:11 PM CDT

It is with great sadness that I have to tell you that Neil's Aunt Gladys has died. She has been in a nursing home over the last few years, but was still mentally sharp up until a couple of months ago. After a couple of bouts of pneumonia, it was discovered that she had breast cancer. They tried some low-dose meds, but she never really regained her health and mental clarity. The photo above was from her 82rd birthday at Red Lobster, her favorite restaurant. The boys loved going out to eat with her.

Zachary is doing OK, and looking forward to his cousins coming to visit tomorrow. He has an exciting weekend planned. Tomorrow he will go to the last day of Drama Camp at the church. Then he will go to Ninja class where he will receive his white belt! In this school you start with nothing, and first have to earn a uniform (last month), then have to earn your belt. He has completed all of the requirements for white belt now, and it will be awarded tomorrow. I am hoping to get it on video. After that, we will be off to a quick dinner, then to the church for Zachary's play: "100% Chance of Rain" ...it is the story of Noah and the Ark.... Zachary plays Ham, somehow I am not surprised. On Saturday we will be celebrating Nicholas' first birthday! He is getting cuter by the second. I spent the day with him yesterday, and it was really nice. He is starting to try to say words and want to know what things are and to try to walk around. It is such a great age.

Round that weekend off with a trip back to Nick and Liz's to return their children to them, and you can see we will be quite busy. Zachary will be going back to Sunrise DayCamp next week to make up for the week he missed in the first session.... then it is back to Hope Lutheran for another week of camp there. He got his vaccination today, so tomorrow I will register him for Kindergarten (yes, really.... I promise!!!). I have been working on thank you cards again and I am actually starting to make progress. You may get one before Christmas at this rate!

Thank you to everyone who still keeps checking in on us. I really enjoy your guestbook entries and emails.

Sunday, July 15, 2007 1:14 PM CDT

Today was the second day of the bereavement camp, and it was a lot better. Maybe it was because I knew what to expect, or maybe it was because I was more familiar with the people, or maybe it was because we talked on more general topics. We brought in things that we were going to put in our memory boxes and some of us talked about what we brought. I brought a little paper oragami frog. On his last day, Zachary spent a lot of the time in the play room with different volunteers. He would come to the room from time to time, but he preferred to be in the play room, family room, or walking around with someone. Thankfully, there were plenty of people willing to keep an eye on him. At one point, a lovely college student was making oragami animals with the kids. She asked Zachary what he wanted, and he said a frog. So she showed him how to make a frog. He took it back to Kendall, and it was the last real exchange the boys had. He gave him the frog. Kendall looked at it, and at him. Something passed between them. I think he knew at that point that Kendall was leaving soon. Zachary patted his hand a bit, and then went back to play. Kendall wasn't able to really speak by that point, but he looked peaceful. He fell asleep not long after, and slept the remainder of the day. He died about five hours later.

Anyway, today's group was more helpful for me. People talked about different things that had meaning to them, and signs that their loved-ones were OK. They had a nice ceremony where we walked over a bridge and pinned paper doves with our loved ones name on it (and whatever message you wanted to write) on a board. Then we went to the boathouse for photos, and they released doves in honor of those who died. It was very beautiful. We had pizza when we got back, and Zachary played with the other kids on the playground for a while. A nice day. I felt more peaceful then I have in a long time. So maybe it did me some good afterall. Overall, I am glad I went.

Saturday, July 14, 2007 7:26 PM CDT

Zachary, my mom, Nicholas and I went to the StonyBrook Child Health Expo on Wednesday, and it was really great. Zachary had a lot of fun. I got to see a few of my old friends from StonyBrook. Lisa, the nurse coordinator was running one of the booths. She always had a kind word for me, and a smile for Kendall and Zachary. Dr. Ahuja was there with some of the other pediatricians reading to the children. She was one of the residents during Kendall's last hospital stay. Her rotation ended just a few days before he died, but she still stopped by even afterwards. She was one of the kindest and sweetest persons. She would often take a minute to just hug me after the doctors came on their daily rounds to give me more disappointing news. When Dr. Prakash basically indicated to me that there wasn't any real hope left, she stayed a long time crying with me and hugging me (all the doctors and residents were crying that day). I will never forget her and Dr. Hogan (the senior resident...... her rotation also ended, but she came back in the end when she heard he passed away, and walked out with me, Neil and Zachary). We got a lot of compassion at StonyBrook from the doctors and nurses. Even though he died there, I can't really fault them. It wasn't for lack of caring or trying. I even talked to their nutritionist for a bit. She was doing a table on body mass index and children. She also was very kind to me and tried to help us find ways to feed Kendall and keep his nutrition levels up. I gave her Zachary's measurements, and she confirmed with my pediatrician said. He is well-proportioned and healthy-look child... but he is in the risk zone for future obesity due to his BMI. I don't see it, but she said basically with these kids it is important to keep them active and help them to make healthy choices.

Well Zachary was certainly active that day. He like walking around the booths, and had the police officer take his finger prints and photo for an ID card. He enjoyed the demonstrations on the brain and the need to wear helmets .... they dropped eggs... then put them in little egg helmets. Very cute. His favorite part was the fitness section. One of the local children's gynasiums came and set up some equipment. He went through their little course about a 100 times. They had a vault, then some mats you can roll on, a bar to do flips on, some parallel bars and a little foam ramp to roll down. He did this over and over. Ronald McDonald came and did a fitness show too. Lots of fun. It was a good day overall and I'm glad I went.

Today we went to the bereavement camp. I think it may have been good for Zachary, but Neil and I didn't get much out of it. The children went into their groups by age... and I have no idea how they broke the parent groups down, but it just didn't work. Most of the people in our group lost spouses, not children. Only one other couple lost a child, and theirs was even more recent than ours (it was a sudden death too....no long illness). There were a couple of ladies who lost parents. The group leader tried to include us, but it was hard. Not only did I not have many issues in common with those who lost a spouse, but I felt that it actually made me feel worse if that is possible. Here I am grieving the death of a child, and now they are making me think about what it would be like and some of the problems I would have if I lost Neil. ARRRGGGhhh! To be fair, the camp is a new program. It was developed by a mother of three who lost her spouse, and it is meant to try to help the children. The focus is not on the adults. They were overwhelmed by the response this year. I was told that previously they had about 15-20 families. They must have had over 60 families this year, mostly thanks to a Suffolk Life article telling about the group. But they wanted to include everyone and did the best they could. I will make sure to give good feedback on what changes I think could help. It is a great program really. Neil left after the first group meeting. He has difficulties in groups as it is. It just wasn't for him. He came back and picked us up when it was over, and played with Zachary in the playground for a bit. Zachary fell fast asleep in the car, and is still conked out.

We are painting the boys' old room now. In some ways this is kind of hard, but I think it is good for us. Neither child has used the room in close to six months now. The old cribs and stuff were just becoming places to store old clothes and stuff. We decided that we would all be happier if we had one room where both Neil and I could be on our computers and Zach could have some room to have his own computer and maybe a TV with his playstation and nintendo games. This way we could all be together. We're going to do the office room over for Zachary. He wants orange walls and a pirate theme so far! Maybe he will move into it eventually.

I'm going back tomorrow for the second half of the bereavement group with Zachary. Neil won't come, but that is OK. I really do understand. We'll find some other group more specific to us. They have a lot of programs there.

Thanks to everyone who still bothers to read my rantings. I love the guestbook entries. I didn't realize how many amature dream interpreters there were out there! For my own take I will say, I am NOT Sue. Sue was rude and obnoxious. I don't know who she represents. I don't know anyone named Sue really (a few Susan's or Suzy's). I don't think she represents anyone in particular. I do think the dream was realated to nervousness about the upcoming bereavement group. I don't really think Kendall was Kendall in the dream either.... but a combination of both of my boys. I am not afraid of losing Kendall.... he is with me forever now. It is Zachary whose loss scars me.... oh, and now Neil's too! But I don't put much stock in dreams. They are just the subconcious' way of dealing with and making sense of life.

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"He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it."

Douglas Adams

Tuesday, July 10, 2007 11:24 PM CDT

We had some really nice weather the last few days, and have spent most of them swimming. On Saturday, Neil, Zach and I went to a nice little beach that we love and swam all afternoon. It was a great day really. Zach took a while to get used to the ocean water again, but after a while he really enjoyed it.

Yesterday I went to my brother and sister-in-law's in New Jersey. Zach spent most of the day in the pool with his cousins and some friends who came around to play. They have a lot of kids in their neighborhood. It is so nice there. Zach had a ball, then curled up on the bed and watched Scooby Doo. We swam a bit more this morning before leaving too. It had to be about 95degrees out! Very muggy. Thanks Nick, Liz, Alex and Andrew for a really great day.

I helped Neil with painting our new family room when I got back. He was so hoping to have it finished by the time I got home. But in this heat it took him a while to get the spackling and prepping done. He did managed to prime most of it, and I primed the trim and got in the corners and such (the trim was all painted bright blue like the walls by the houses' former owners!). We'll finish the priming tomorrow probably, and hopefully start getting color on the wall by the weekend. This weekend we are supposed to go to a bereavement camp sponsored by Good Shepherd Hospice. So I don't know how much will actually get done.... but eventually we will finish it.

Anyway, I think got a sign from Kendall today. It was one of the oddest things. I woke up very early this moring very depressed after a really horrible dream. I do sometimes dream about Kendall, but usually in those dreams he is happy and laughing and dancing, and they make me miss him, but they are usually not sad dreams in and of themselves. This one was different. I dreamed we were at some sort of family event.... a play the children were putting on, and I sent Kendall with "Sue" to go get ready (I don't know anyone like this Sue). Sue was very obnoxious to me and made me mad. So after Kendall danced away (those who know him know that he seldem "walked" anywhere.... he was always dancing and skipping) I went to sit with Neil and told him, and he said we should leave. So I went back to get Kendall (Zachary didn't seem to be in this dream at all... weird). I talked to one of the other workers (it was actually one of my old co-workers!), and they didn't know any Sue. I started running around looking for Kendall.... screaming his name. He was lost. We couldn't find him anywhere. I startled awake and was so horribly devastated by the whole thing. I went outside to cry. It was an awful feeling and I'm kind of afraid to go back to sleep now. I eventually calmed down and Zach and I had a pretty good day, but I had been carrying this heaviness with me all day. When I got home, I saw the new Land's End catalog on the counter. I almost never order from them, though I love their clothes. But some kind people had given me some gift cards, and I meant to order Zachary some shoes from them. Even so, I almost never actually pick up the catalog itself, because I usually look online for everything. But we were eating in front of the TV because our table is covered with painting supplies. So I started thumbing through the catalog backwards, looking at the shoes and stuff. When I got to the first page, I couldn't believe it. There was an add for some lunch bags. I was laughing because I couldn't picture paying $20.00 for a lunch bag for a child..... even if it was monogramed. Then I looked at the names. The very first bag on the page, was a red bag with the name Kendall and a soccer ball on it! Kendall loved soccer, but more importantly the soccer ball made it look like a boy's bag. For some reason, the name Kendall had been taken over by girls, and the very few times I have seen it on items.... it was always with a girly theme. This was just so freaky. The name on the lunch box next to Kendall.... was Morgan.

I don't know if this counts as an official sign, but I ripped the page out of the catalog and I'll put it in my memory box with the other things I've found. I just can't help but think that I usually throw those catalogs away without even looking at them..... but something compelled me to look today. Regardless, I felt some of that heaviness lift off my heart afterwards, so it helped me in some way. In that way, it was definitely a sign sent to comfort me. These are the things that keep me going sometimes.

Thursday, July 5, 2007 8:41 AM CDT

Happy fourth of July everyone!

Our fourth was boring and quiet this year. First of all, it rained. This eliminated our plans for an outdoor barbecue or firework viewing, though I did drive around with Zach around 10pm and looked at some of the fireworks. He was thrilled, even though it was just viewed from the car. There was one point where some teens with illegal fireworks set them out in the middle of a fairly busy road, and we got a close up view (aaack!!!). These same brain-damaged kids were also holding roman candles or something of the sort and shooting them off in the air.... aiming just above the level of our car. Zach and I had a nice talk about the stupidity of such behavior! We went to Walmart in the morning to buy paint as we prepare to re-do the "boys" bedroom, and make it a family room/office. Our office will become Zachary's bedroom. This will take some time, but hopefully it will get Zach out of my room completely. Right now he sleeps in his bed in our room, which was the first step. Now we will re-do a room for him (I'll probably have to get a job first though!). Hopefully a new bed and new decorations will encourage him to sleep in his own room again. We spent the rest of the day cleaning the basement a bit... didn't get very far though.. and playing Zach's new playstation game. He was coughing and sneezing and sniffling. I thought it was just an allergy attack at first, but as it went on and got worse, I realized that he must have picked up a cold. This is upsetting because it means no Sunrise Day Camp. He really didn't get a full session this time, so I will see if I can sign him up for one of the other weeks.

Many have asked me how I can be so positive and upbeat all the time. Well, the truth is I can't and I'm not. I look at pictures of Kendall having fun and enjoying life, and it breaks my heart. I miss him more than I can adequately express. I cry daily for him. But getting out of the house, doing things, and being around other people helps a lot. My natural tendancy to be upbeat and friendly around others and suppress whatever negative feelings I have is still there. When I'm by myself, the depression tends to really set in, so I get up and get moving.... I do yardwork, I ride my bicycle, I walk through the mall... whatever. As long as I am busy, I am usually feeling OK. Not always good, but OK. But quiet drives in the car by myself, or sitting at home, are very hard.

I take comfort in the many signs that Kendall sends me, and in my own faith that he is a lot happier in Heaven then he could have been here on Earth. I am thankful that he didn't suffer all that long, and that his pain was fairly well controlled towards the end. I am thankful that he was smiling even that morning.. though it was a very tired smile. I wasn't a very religious person before Kendall's illness. For that fact, I just the year before he got sick, I had a great crisis of faith when my father died suddenly of a heart attack. I was so very angry at God for taking him away from us just when we were starting to really spend some time together again. He was so happy to be a grandfather. I remember just a short time before he died, he told me how proud he was of me as a mother. He said he didn't think I would be able to handle motherhood, and thought that twins would be way too much for me. (You had to know me before the kids to understand this.. he wasn't the only one who felt this way!) But he was just so proud of me when he'd see me with those boys, easily managing both of them without a whole lot of fuss. I talked to him the day before he died. He called and was upset that he had been working so much that we hadn't been able to get together for the boys' birthday yet. We made plans for that Thursday. Even though my dad had retired a year before, he did a lot of work during that time on his own. He was a tile setter and in great demand for his skills. He said he was going to finish the job he was working on this week, then take the summer off and just enjoy his grandchildren. We talked about going to his house in Pennsylvania... one of the main reasons he was working so much. He was finishing off the basement and needed the extra money. We talked about the pool table he was so happy to have, because he knew me and Neil loved to play. We made a lot of plans. The next night, around 1:30am, I get a phone call. I thought it was Neil who was away in Texas at the time on a conference, so I was annoyed and didn't get up to answer. But in my half-sleep state I heard a horrible sound.... my brother Nick's voice on my answering machine... and it was upset. I dragged myself up out of sleep and went to the phone to listen to the message... and he called back a minute or so later with the news... my dad was gone. I cannot even tell you how horrible that was. The only thing worse, was losing Kendall. I was angry at God. Furious. How could he take away my dad, just when he was starting to make time for us! I stopped going to Church (not that I was all that consistent of a church-goer, but I stopped all together). Eventually I started going again once in a while, because the emptiness I felt was worse than the anger. Those who have no faith, have nothing. What do you comfort and console yourself with after someone is gone? Death is a part of life. You cannot excape or avoid it. Everything and everyone will die at some point. But if you have faith, if you believe in message that Jesus came to give, then the unbearable becomes bearable (somewhat). You can get through it because you know that you will again be rejoined with your loved ones. That is what keeps me going and gets me through the bad times.

When Kendall was diagnosed, my faith was strengthened. It would seem like it should have been the other way around. What kind of God would inflict cancer on inocent children! How could a loving God take away one of my twins! But strangely, just the oposite was true. I began to see His works in all sorts of instances and circumstances. There were many times when I felt His presence, and was comforted. I don't know why Kendall had to die. I don't know why any of them have to die. But I do know that God was with him. Kendall had the faith of a child.... very strong and unquestioning. Even as sick as he was, he wanted to go to Church on Easter. We had long talks as he related scenes in the Star Wars videos that he was so fond of, to religious ideas and values. Almost every time I really start to miss him or feel down, a sign of some sort is sent. Just the other day, while I was moving rocks, I started to think about why again. A useless question really. I was angry at the doctors at MSK for the way they kept blowing me off, and delaying making decisions. I felt that if they had been more on top of things, we could have maybe done another treatment that may have helped. I felt that if Dr. Kushner hadn't been so damn infuriating to me when I first spoke with him, I may have been more inclined to seek the antibody treatment after our initial treatment was done. Maybe that would have made the difference. Maybe not. It is the guilt I must bear now that I wasn't more aggressive with them about getting him the treatment he needed. You can say what you want, but that guilt will be with me forever. Anyway, all this was going through my mind as I hauled buckets of heavy rocks and dirt from one end of my lawn to the other, when I looked up. There, right above my head, was a question mark. I mean a perfect question mark in the clouds. I grabbed my cell phone and snapped this photo:



It completely dissapated before I could get a second shot. But you can kind of make out the question-mark shape. There was even the little "dot" at the bottom. It dissapated so quickly, that if I didn't have this photo I almost wouldn't have believed it was really there. Coincidence? Maybe. But my faith gets renewed with each sign I see. I felt a connection, as if God was also questioning "Why?" along with me.

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Genesis 4:6
Then the LORD said to Cain, "Why are you angry? Why is your face downcast?

Sunday, July 1, 2007 7:28 PM CDT

SIGN from Kendall: I forgot to mention the most recent sign from Kendall. I took Zachary to Ms. Helene's park yesterday before our bike ride. He was playing with this very energetic little boy named Dominic and his little brother. I was sitting nearby when I overheard Zach start talking about Kendall again. He told Dominic that he had a brother too, but he couldn't come to the park anymore because he was in Heaven. Dominic was only 4 and not really understanding him. Zachary explained that is where you go when you die, and Kendall died. It is so hard for me to hear him talking about it in such very matter of fact terms. I am sure this is good for Zachary, so I don't interfere. I am not sure the other parents appreciate it, but that is their problem. So I got pretty depressed and started to walk around the park. I was thinking about how much Kendall loved it there. He loved to run from one end of the field to the other. He loved the climbing train, and the slides. It was always a fun place to take the boys. I went over to sit on the swings, when what do I see but a little triangular piece of purple plastic. I pick it up (I have no idea why), and it is a guitar pick. On the other side, there is a picture of a turtle over the word Dunlop. The turtle has a very sly smile.... like he is laughing at me! I couldn't help but smile too. It is going in my Kendall box with the other things I have collected. I still tend to associate him more with frogs than turtles, but he did love the ninja turtles, and a ninja turtle was the last item he requested from me.


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Well it's been a busy week! On Tuesday Neil, Zach and I went to Splish Splash and had a great time... except for poor Neil's feet hurting. His knee isn't doing so great either. But we had fun anyway. Zachary particulary loved the wave pool.

Zachary started Sunrise Day Camp on Thursday and had a fantastic time. He wasn't even upset that they didn't get to swim because of the thunder storms passing by. I took him for a swim at my mom's afterwards anyway. Just as well, the lightening knocked out something at Neil's job and he had to go back to work most of the night and a good part of Friday too. He really isn't having the best of luck this week. On Friday I took Zach out of camp a half hour early to make it to his Ninja class on time. We had plenty of time even with the Friday afternoon East End traffic, and I think I only need to take him out 15 minutes early. He was upset to leave camp, but had a great time while there. He got over it as soon as he got into Ninja class.

Saturday morning was the Tactical Ninja Training event. This event was also held as a fundraiser for St. Jude's Children's hospital. Apparently, Kyoshi Allie's daughter has become a big supporter of children's cancer organizations after watching a St. Jude's video! I was so happy to hear that and spoke with him briefly. I didn't tell him about Kendall at the time, but asked if it would be OK if I emailed him about some of the local children's cancer organizations that he may be interested in. I wasn't looking for fundraising, though that is always nice, but rather to see if he would consider doing a special program for the kids at Sunrise Daycamp. Maybe even just some demonstrations to entertain them. I'm sure the kids would love it. Anyway, the obstacle course was a lot of fun. Zachary did very well. The Sensei's were close at hand to help them through the harder parts and make sure no one got hurt. The then got to learn to use the blowguns (they blow darts at a target), bow and arrow, and the ever popular shuriken! I thought they were going to use fake ones and just kind of pretend, but they actually had the kids throw real stars that were sharp enough to stick in a plywood target! Zachary didn't get to take his second turn at it because the program ended just as he was starting it, but he had good form the first time. We will practice throwing balls and next time I'm sure he will be even more impressive. I got the whole day on video, which I hope to convert to DVD sometime this week.

We worked around the yard for a bit after that, then we went to Tom and Michele's for dinner. They had an ice cream cake in honor of my 40th birthday... so sweet. Thank you guys. We are very lucky to have such good friends. Linda and Kathy came with their adorable daughters, and the kids all had fun running around and playing dress up. Zachary was Cinderella. Neil was so proud! (hee hee!)

We had a quiet day today. I took Zach to the park for some bike riding and playing on the slides and stuff. I wanted to share the thank you note I sent to Hope Lutheran for the fundraiser they did for my family. We finally got the check just in time as we got hit with some significant bills this week. Thank you so much for all those who contributed. I have some ideas on how to help make a difference for some other families in the future that I will be sharing with you as the time comes.


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Pastor Hill’s last couple of lessons really spoke to me. In one he asked why we come to church, in another he talked about loving Jesus, and everything else will fall into place, and in the third one, he talked about love for our fellow Christians, and the unity and “oneness” of all Christians. Not being the same or even worshiping the same way, but having a common bond.

When I got the email from Cindy Merkler asking if she could do a fundraiser for my family, my initial gut response was “No”. We don’t need help. We are fine. Then I thought about how I had just made the decision to not work any more, but to stay with Kendall and Zachary when they most needed their mother with them. Money would help make that decision easier on my family. So I replied “Yes.” It was not easy to do. It isn’t easy to accept the help of others when you are so used to being independent and self-sufficient, but for my children’s sake, I agreed. She was so enthusiastic, that I found myself enjoying speaking with her and reading her updates. I had no idea at first that she had such a large event planned! As time went on and I realized that Kendall was not going to be there for the fundraiser, I told her, but she still wanted to help the family.

The day of the fundraiser was difficult for me and my family at first. Kendall had died just over a month before, and we missed him so much. But things were planned and we went anyway. I’m glad we did. I could not believe so many people got together to help out. I cannot tell you how much it touched me to see all those people who came to show support and love for my family. I truly felt Kendall’s presence that day, and I know he was happy too.

On the day of the fundraiser, I felt a lot of love for my son and my family. I am so grateful for everyone who participated, for all those who helped out in ways big and small, for all those who came and enjoyed the day with us, for those who couldn’t come, but sent money or donated items to be raffled or sold, and to Pastor Hill, Vicar Josh and all of Hope Lutheran Church for being there for us. The truth is it wasn’t really about the money. While it will help ease our burden a bit, what you all really raised on that day was my family’s spirits. I will never forget this.

I wanted everyone to know that their good works will not stop here with my family. We intend to use some of the money to “Pay it forward”, and will find a way to reach out to other families in need, so that they too may feel the love and unity that we have experienced. Thank you all.

Monday, June 25, 2007 11:55 PM CDT

Today was my birthday. I turned 40. I still miss Kendall so much. It doesn't matter what day it is really.

However, I have managed to have a pretty good day and weekend I think. On Friday after Ninja class, I went to dinner with some friends and our children (thank you Kathy and Linda!). The kids were a bit punchy, but I still enjoyed getting out with them. I'm not so sure the people at the surrounding tables enjoyed them as much as I did though!

I did some stuff around the house on Saturday, then I took Zachary swimming at my moms. We had a quiet movie night after that. Zachary loved "The Kids from Shaolin", a Jet Li movie. Very funny. It is one of our favorites.

Sunday was one of the most relaxing days I have had so far. I took Zachary, Jessica and Kathy to the Long Island Game Farm. We used the Give Kids the World passes, and I have to say, it is a beautiful place. Too bad it is so pricy. I'll be on the look out for coupons in the future. But the passes got us in for free this time. The weather was perfect, and the farm is very peaceful. The paths are quiet and shady, very beautiful. There is something relaxing about feeding and petting deer, goats, and llamas. I actually got to feed a giraffe! We watched the young tigers training session (because of the sun they were a bit uncooperative, but still impressive animals to see!). Then we had our photos taken with Singapore... a beautiful white tiger with dark brown stripes. I scanned in the polaroid, but it didn't come out that great. Still, you can see how beautiful the tiger was (above). He was only about a year old... but HUGE! The other photos from the day are on a disposable camera as my camera is still broken. I'll get them developed and post any that came out well later in the week.

Later on Sunday I went to Sunrise Day Camp's orientation. It was pretty hard. I keep thinking I shouldn't be there. But if it wasn't for them, Zachary's summer would be so lonely. Most of his friends are either from the Morgan Center or the camp. Everyone else I know sends their kids to daycare or camp. We cannot aford camp this summer, as we are still struggling to pay off the funeral expenses and I am still not bringing in a salary. So Sunrise is an absolute Godsend to us, and Zachary is very excited. Next year we will be in a different position I'm sure, and we'll be able to send him to other camps. Not that any could compare with the experience at Sunrise, but it isn't fair to be taking up resources that could be used for others. On the other hand, Michele said that the camp can accomodate up to 600 campers! They have about 170 so far this year, and they are still accepting more applications each week. So really one little 5-year-old isn't much of a problem. If anyone wants my notes on the orientation, I'll be happy to email them to you.

So that brings us to today. We lugged the bike rack up and got all of our bikes out, oiled, re-adjusted, tires inflated, and loaded up onto the hitch. We went to the park over on Pond Path and rode around for a bit. After that I went to donate my hair.

Oh, that's right... I forgot to metion - I decided to donate my hair. I was considering shaving the whole mop off at a St. Baldrick's event, but decided agaisnt it for a couple of reasons. First of all, I simply have asked family and friends for too much this year, and I don't think I would be able to raise the 5-6 grand I would need to feel good about shaving my head bald. Secondly, I have to start interviewing for new jobs soon and I need a neat and professional appearance. While I think bald heads are kind of cool on women, some people consider a shaved head to be a bit radical. I would be too nervous and uptight to pull it off properly. And finally, the most important reason I decided against it.... Kendall didn't want me to. I told him last year I was going to shave my head to raise money for cancer, and he said empathetically NO. He said "Daddy can shave his head, but not Mommy. No way. Hmnpf!" The idea of me without hair distressed him greatly. So even now that he is gone, I think it would be wrong to do it. Zachary wasn't even keen on the idea of me cutting my hair... let alone shaving it. They associate bald heads with illness. It is too upsetting for him.

However, as I said, it is time to start interviewing. My hair has not been cut in over three years (not since right before Kendall was diagnosed), except for one time last year when I had a couple of inches of the dead ends lopped off. Here is a before photo taken by Zachary today:



I went to a salon in East Setauket called Altima on 25A. When you donate your hair to Wigs for Kids, they give you a free hair cut. Of course, I gave a very generous tip! Theresa did a great job, and this photo does not do it justice. It was taken with my cell phone by Neil (not the best photographer in the family):



My hair is just above the shoulder now. I just let her do what she wanted and hoped for the best. I really have not been paying attention to modern styles, so I hadn't a clue as to what to ask for. I told her I wanted a more buisness-like look that would be easy to manage myself. I think she really succeeded too. Neil loved it (or so he said). I will have to get used to using a blow dryer again though!

After the hair cut, I went to the cemetary and placed new flowers. It is getting easier for me to go there. I find it more comforting than sad now. The grass is slowly coming in, and I pulled some weeds that tried to make their way through. I guess the weed killer is wearing off now! We still don't have the marker in yet, but it should be sometime in the end of July or beginning of August. While I was there, I got another sign from Kendall. Just a few feet in front of his grave, directly on the way to the can to throw out the wrappings for the flowers (like I always do), I saw a scrap of white plastic-like paper. I thought it was one of the envelops that holds the flower food that comes with fresh cut flowers. So on the way I stopped to pick it up. I almost dropped all my stems and wrappings when I saw it. It was a foil envelope that held the individually wrapped Purell wipes!. Who would have thought such a thing would turn up there. It was empty, but it looked as if the middle part had a hole bitten through it! Weird. I always had antibacterial wipes and bottles of Purell on me... and usually I still do. I was just saying to Kathy the day before that I was mad I didn't have any more of those convenient travel packs of wipes... because they are easier to cary than the big bottle! I guess Kendall was listening and wanted me to know.

We left Zachary at my mom's for the night, and went out to dinner. After much debate, we decided to go to Chili's, because we still had some gift certificate left for there (thank you Gen and Victoria!). We are trying to keep our spending down a bit until I start working again.... and tomorrow we are going to Splish Splash with Zachary. That is bound to up our credit cards a bit, so we figured we'd be as frugal with dinner as possible. I don't mind. We had a nice time, but the food and margarita's did a number on my stomach. So we skipped dessert and came home to watch Kung Fu movies and had a good laugh. It was overall a good birthday.

I still missed Kendall though.

Friday, June 22, 2007 10:56 AM CDT

I just love the photo above of Neil and Kendall at A Mother's Kiss' Christmas Party last year. He looks so very happy. He was so very sick at the time, but we didn't realize just how bad it was. He slept a good deal of the day, and at one point was dozing on the stuffed santa doll in the corner. But he got up and danced and had his photo with Santa and smiled his little heart out. God I miss him.

We had a good few days, but yesterday for some reason I was just very down. I don't even know why. Father's day was good. We just had our friends Tom and Michele and their adorable 3-year-old Connor over. They brought an inflatable pool and the boys had a lot of fun splashing around (that included the 'big boys' too!). We are blessed to have some really great and supportive friends. On Monday I finally made the trip down to New Jersey to visit my brother's family. It was a great day for all. Neil couldn't come, but Zachary and me had a wonderful day playing in their pool with his cousins Andrew and Alex. They also invited friends Jim and Tracey and their absolutely adorable little girls Brooke and Noel. Jim and Tracey lost their beautiful four-month-old boy to SIDS just a couple of weeks before Kendall died. It was good to see them too. We all share unbearable grief, that we have no choice but to bear. Still, to get out and see our children playing and having fun can't help but make you smile. Children are so amazing. They process things so differently then we do. They tend to handle grief in short bursts and then move on to something else. My friend Donna, explained it best. She said adults tend to grieve with one foot in the grave and one here on Earth. Children jump in with both feet, and then out with both feet, then back in again until they have processed it completely.

On Tuesday I drove back and stopped at the Children's Garden at the Camden Aquarium. When Kendall, Zachary, Mom and I went there last year, I saw the Garden, but it was too cold to go out there. I had planned a return trip in the nicer weather. It was probably a mistake. I needed to kill a couple of hours because I wanted to stop by my sister Kathleen's on the way home, and needed to get there sometime after 6pm. When we got the to Garden it was full of children..... a preschool graduation. The place was beautiful. But these children were all from a group, and not really interested in playing with Zachary. Zachary enjoyed the sprinklers, and climbing on the "ants" and other things, and we had fun going through the maze together. There are a few rides, and we went on those too, but by the time we got on the train, we were the only ones there. The graduating class cleared out, and the temperatures soared. It was way too hot. It just made me miss Kendall so intensely. Zachary is a trooper and I played some games with him, but he misses Kendall so much. They would have had so much fun there together and it is impossible not to think about it. If I go back there again I'll take his cousins with me. We got ice cream and walked along the boardwalk watching the boats. Zachary wants to go on a boat or go fishing very much. I'll have to see what I can do. It was hot and we still had an hour to kill, so we went to the Cherry Hill Mall on the way back. I figured they would have some sort of game room or something for kids (our malls all have something). Nope. While I was there Kathleen texted me that she was going to be stuck in a meeting and our plans were cancelled. So we left and drove home, hitting the Belt right in the heart of rush hour. Oh well. It was good to be home. Zachary played with Neil and I slept (he slept in the car).

We spent a quiet couple of days. Yesterday I was really sad. I don't really know why. I guess it all just catches up to you at times. I had started to write out our thank you notes a few days ago, and I was going to do a few, but was just too depressed. I worked half-heartedly outside for a bit, but didn't acomplish much. I did bag five large bags full of leaves and brush from the side of our house. I have to get more bags now. I made Zachary walk with me to the bank and Subway for lunch.... just to get some exercise in. We then went to Chuckie Cheese with Kathy and Jessica, and that did lift my spirits a bit. There was some excitement as a large pickup truck caught fire just behind mine. Lucky no one was in it. Scary though. We got home and Zachary played some Nintendo with Neil, and I again put off the thank you's. For those who gave donations or money to help us out, sent flowers or baskets, came to the funeral or wake, or just sent a card and kind thoughts I am truly grateful. Mom sent the cards to those people she knew already. I have writen about a dozen of ours, but it is a struggle. I separated out the ones Neil will write (like to people he worked with or friends he wants to thank personally). We'll get to them eventually. Just know you are thanked in my heart. I received lists of memorial donations to the Morgan Center, Mother's Kiss, and the church, as well as a few to various other organizations. So your generosity was duly noted and appreciated.

On June 30th Zachary's ninjutsu class will be having a Tactical Ninja Training day and fundraiser. They are raising funds for St. Jude's, yet another worthy children's charity. Anyone who wishes to sponser him is welcome to contact me. He will be doing an obstical course, and learning to throw shuriken (throwing stars or darts) and possibly some other weapons. Lots of fun. Hopefully I'll get some photos... my camera is broken (yes, I dropped it... again). We can't buy a new one right now, so I'm going to see how much it would cost to fix it.

Anyway, I'm going to try and have a good weekend. Hopefully the weather will be nice. Happy Summer to everyone.


**********************

My Mom Is A Survivor

My Mom is a survivor
Or so I've heard it said
But I can hear her crying at night
When all others are in bed
I watch her lay awake at night
And go to hold her hand
She doesn't know I'm with her
To help her understand
But like the sands on the beach
That never wash away
I watch over my surviving Mom
Who thinks of me each day
She wears a smile for others
A smile of disguise!
But through Heaven's door I see
Tears flowing from her eyes
My Mom tries to cope with death
To keep my memory alive
But anyone who knows her knows
It is her way to survive

As I watch over my surviving Mom
Through Heaven's open door
I try to tell her that angels
Protect me forevermore
I know that doesn't help her
Or ease the burden she bears
So if you get a chance go visit her
And show her that you care
For no matter what she says
No matter what she feels
My surviving Mom has a broken heart
That time won't ever heal

By Kaye Des'Ormeaux October 15, 1998
Dedicated to the Mothers who have lost a child & have somehow survived

Saturday, June 16, 2007 10:41 PM CDT

Zachary had a great couple of days. On Thursday we spent the day with his friend Jessia. We went to the mall for pretzles (and some playtime on that "Reatrix" light/game thing. We went to Ms. Helene's park afterwards, and I had to practically drag the kids away, even though it was pretty cold and damp out. They had fun with the other children.

On Friday, we went to White Post Farms Zachary's friend Daniel. It was good to see his mom again too. The boys spent hours climbing on all the different climbing structures they have (some new ones too!), and going through all the little play houses (see photo of them through one of the windows above). I fogot how much I liked that place. It was a favorite of Kendall's as well. This time, we got to feed a camel and some Aoudads! Zachary relly enjoyed the day.

This morning Neil joined Zachary in his ninja class for the special Father's Day training and car wash! (the students washed our cars today!) He had fun, though it was tough on his poor knees (the frog walk was something to behold!). We got Zach's hair cut, and then Zachary and I worked in the yard. Lots of pruning and picking up leaves and brush. We had dinner with our friends Tom and Michele and their son Connor after that, and made arrangements for a barbecue tomorrow. I'm glad Neil is looking forward to something. He's been pretty stressed. Tomorrow is hard because he misses his son and his father (as do I). Zachary is looking forward to it though. He loves playing with Connor.

I'm tired and going to sleep now. Maybe I will update tomorrow. If not, Happy Father's Day to all the dads out there, especially those who cannot spend the day with their kids.

Saturday, June 16, 2007 10:41 PM CDT

Zachary had a great couple of days. On Thursday we spent the day with his friend Jessia. We went to the mall for pretzles (and some playtime on that "Reatrix" light/game thing. We went to Ms. Helene's park afterwards, and I had to practically drag the kids away, even though it was pretty cold and damp out. They had fun with the other children.

On Friday, we went to White Post Farms Zachary's friend Daniel. It was good to see his mom again too. The boys spent hours climbing on all the different climbing structures they have (some new ones too!), and going through all the little play houses (see photo of them through one of the windows above). I fogot how much I liked that place. It was a favorite of Kendall's as well. This time, we got to feed a camel and some Aoudads! Zachary relly enjoyed the day.

This morning Neil joined Zachary in his ninja class for the special Father's Day training and car wash! (the students washed our cars today!) He had fun, though it was tough on his poor knees (the frog walk was something to behold!). We got Zach's hair cut, and then Zachary and I worked in the yard. Lots of pruning and picking up leaves and brush. We had dinner with our friends Tom and Michele and their son Connor after that, and made arrangements for a barbecue tomorrow. I'm glad Neil is looking forward to something. He's been pretty stressed. Tomorrow is hard because he misses his son and his father (as do I). Zachary is looking forward to it though. He loves playing with Connor.

I'm tired and going to sleep now. Maybe I will update tomorrow. If not, Happy Father's Day to all the dads out there, especially those who cannot spend the day with their kids.

Wednesday, June 13, 2007 9:40 AM CDT

I love that opening photo above. Kendall looks so happy and healthy that day. It is hard to believe that only about a week or so after this photo was taken, we would get the awful news that the treatment that had been giving him such a great quality of life was no longer working.

Signs from Kendall: I got a couple of signs to share with you. The first one comes from my mom. She went down to the basement to get some more clothes for Nicholas (our dear friend Melissa gave her lots of beautiful baby clothing that her children had outgrown). Mom said she had washed the clothes when she got them, and put them in a box downstairs for when he reached those sizes. When she opened the drawer (or box?) right on top was a little bib with a picture of a frog AND a turtle on it. It says, My Aunt Loves Me (I'm Nicholas' aunt). She does not remember seeing this bib when she first got the clothes (it would have caught her eye I'm sure).

The other signs this week are the rainbows seen above. Monday marked exactly two months after Kendall passed away. I filled out a job application that I really want in the morning, then spent a couple of hours with Zachary outside loosening the dirt and pulling the weeds up in the bare patches of my lawn. I'm preparing it for re-seeding. Hopefully this stuff will work and we can get some grass to grow again. After this we went to Ninja class, and that day I was particuarly sad, as the lady with the twins was there again and it was the two-month mark, and Zachary was just having so much fun. I am so mad we didn't get Kendall involved in martial arts earlier on! I know we really didn't have the chance with the way his treatment went, but I can't shake the feeling. Anyway, I went to Mom's so that Fritz could fix the sleeves on Zachary's gi (I had him cuff them and tack the cuffs up). We decided to stay for dinner, and I got some steaks for the barbecue. While Fritz was getting ready to cook them, and Zachary was playing outside, I went to the cemetary to put flowers on Kendall's grave. I haven't been there in a few days, and I think they mow on Monday's, because the flowers always seem gone then. It is only about a five minute drive from mom's house. I quickly arranged the flowers and put water in the cup. I noted that the grass over his grave is finally starting to grow. I hope the marker comes in soon. I was only there for a couple of minutes, when I heard the sound of thunder. The sky got dark so fast it made me nervous, so I picked up my stuff to leave. Then a huge flock of black birds swooped over my head into the trees about fourty feet away, making loud anxious sounds. I quickly walked to the garbage pail just across the road to toss the wrappings for the flowers, and it suddenly downpoured! I mean, it went from one or two drops to a deluge! I ran to the car, and started back to my mom's, (getting slightly lost... again!) and she called me to say it looks like it would rain soon and we are eating outside, so I should come right back. I told her I am less then two miles away and it is pouring! She ran out and brought all the food in quickly before the rain started. The storm lasted less than five minutes, but absolutely soaked everything! Afterwards, we saw the double rainbow over the clubhouse behind my mom's unit, and then a few minutes later, a single very bright rainbow over the houses just to the left of mom's (see photos above). Zachary said he thinks the rainbows mean that Kendall, God and Mimi were smiling at us! We all thought that was really sweet.

The next morning, I was reading an update on a friend's site, and she spoke about how her sons were starting to feel a bit neglected due to her daughter's cancer treatment. I went onto SuperSibs website to get some information for her on programs that I thought may help. They are a wonderful organization that helps make the siblings of cancer patients feel special (sends them gifts and cards, they have chatrooms and you they can start their own CarePage website there too, etc). While I was there, I discovered two things. One, they offer bereavement services for siblings. You are supposed to notify them if the cancer patient dies so they can send a bereavement package, and they will send books and stuff too. Also, I went to the links page for the first time. I don't know why. I have been on that website many times and never felt the need to look up the links and resources. And what jumped out at me was a link to an international organization called Rainbows!. They are dedicated to helping children navigate through difficult changes in life, such as due to death or divorce. They do not have a local chapter her in Suffolk, and I think maybe I am supposed to start one. I can't do it right now, but I will keep them in mind as I find ways to help honor Kendall's memory. The website has a ton of great information, and I am going to send some of the articles to friends of mine who I think it will help. I can't explain it, but I truly feel as if I was guided to this page. The fact that the "rainbow" incident occured on the two month unniversary of Kendall's death, and the very next time I log into my computer I find the rainbow website, seems too much to be a coincidence.

Anyway, the other photos above are of Zachary in his Ninja gi. He is very proud of it. As you can see, it is very cool looking, especially on the back. The three animals you see on it are a fox, an owl and a cheetah. The Mighty Ninjas (ages 6-8) use these animal symbols to remind them of some of the qualities they are trying to develope - the cunning of the fox, the wisdom of the owl, and the speed and agility of the cheetah. The Little Ninjas (ages 3-5), use an eagle (focus of the eagle), a wolf (hearing of the wolf), and a bear (heart of a bear). Very cute.

On June 30th, Zachary will be going to a Tactical Ninja Training day and fundraiser for St. Judes. The TNT day is an outdoor event with an obstical course and cool weapons they get to try (rubber shuriken or throwing stars, the blow gun, and archery). They are donating part of the proceeds from the day to St. Judes, and ask that the children bring any money they can collect from sponsers with them as well. I won't be doing a lot of promotion of this as we have asked for way too much money lately, but anyone who wants to can just give me the money and I'll send it along. They also gave out more cards for friends who want to come and check out the ninja classes. It didn't say on the flier we got which organization they were raising money for, and I was absolutely thrilled to hear that they are are supporter of chidren's oncology programs. St. Jude's has a lot of pioneering research, and they are working on a lot of promising projects.

I am thinking that my next Lemonade Stand will be in September. I am thinking maybe I'll do it at the Brookhaven Country Fair (this should not be confused with the horrendous Brookhaven COUNTY Fair held at Bald Hill.... which is a huge rip-off and not worth attending). The Country fair is really nice, with civil war re-inactments, and lots of different booths with crafts and food, and they have a little farm area with old-fashioned games and pony rides and such. It is a really nice place and attracts quite a crowd. I think it would be a good place to hold a stand. Some photos of the boys having fun there can be found on my photobucket site: Brookhaven Country Fair 2006. (email me for the password if you don't have it). However, I would need help with this one. There is no way I can sit there for the whole day with Zachary. I think the fair is two days (will get details later). If I could get some volunteers to help man the stand, I could do it. We could switch off watching eachother's children. I was thinking that maybe I will raffle off a basket or something, so if anyone has any basket ideas or skills, let me know. Maybe something with a lemon theme or a children's theme. I'll work on it. All ideas are welcome.

**************************************

"You must be the change you want to see in the world."
Mahatma Gandhi

Friday, June 8, 2007 10:37 PM CDT

Today was a real rollercoaster of emotions, especially as I didn't see this one coming!

First of all, I want to mention that the Phone Bank for Alex's Lemonade Stand was truly AWESOME and raised over $700,000 for pediatric cancer research!!!! If something like that was to air nationally.... can you just imagine how much could be done? I am very proud to have been even a tiny part of it. Tomorrow Alex's original lemonade stand will be held again, and this year their goal is $100K! A lofty one, but last year they did $75K, with the help from some great corporate sponsors. Lukoil will match donations up to $25k. More info on their website at: Alex's Lemonade Stand. I am just amazed at what one little girl was able to start. To date, over $10 million dollars have been raised in her name. Inspiring.

Commerce bank is joining in the fight too. They pledged $100k yesterday,and they also are arranging to have their change counters available so you can bring your change and have it donated to Alex's Stand (if you choose). I found the one over here on Horseblock Road to be a bit unorganized and confused when I tried to donate a $10.00 bill, but I'm sure they have things moving smoothly by now. Kudos also to Applebee's, Rita Ices, Volvo and Toyota for being strong supporters as well. Rita's runs their annual fundraiser throughout July for Alex's. I should also mention that they have some of the tastiest chocolate ice cream custard I have ever had! (They also have a low calorie sugar free ice.... that's the one I usually get.... yeah Right!).

Anyway, back to my day. First Zachary had his yearly doctor's visit and vaccination. Zachary was absolutely brave! He kept asking if he would get a shot, but wasn't really whining about it (though he kept repeating that he didn't want one). He actually got two this time because we were overdue, and he took it like a brave warrior. Barely a wimper. No tears at all. He got two lollipops. But it was hard seeing that office and Kendall's pediatrician again. He had called me a couple of weeks ago to send his condolances, and today only hugged me and patted my shoulder. Even that almost set me off.

But we shook that off and went to the library. This was Zachary's treat. He got to play on the computer for an hour while I looked at some of the parenting books. I determined I have done everything wrong and scarred him for life, then we made a card for Fritz's birthday (Happy Birthday Fritz!). I dropped him at Mom and Fritz's so Zach could have lunch and swim a bit, and I went and returned some things I bought that didn't fit. Then it was off to Movie Night at the Hanata Dojo in West Islip. This was Renshi Allie's first school, and it is an impressive training center. They have closed-circuit cameras in the rooms so the parents can watch the kids from a waiting area. I lied that. They have two large training rooms and lots of cool weapons. Zachary was a little overwhelmed by the crowd at first, but soon he saw some familiar faces and marched right in with his class. I left with some of the other Port Jeff moms to eat at a nearby diner. Here was my first dilema. It is almost two months since Kendall died, and for the first time someone asked me how many children I had. I can't explain how this feels, but at the time I just didn't want to get into an involved conversation. So I deflected the question by saying I only have Zachary here right now, and asked the other mother about her car or something like that. We had a lovely discussion about the pros and cons of a minivan vs. an SUV.

Anyway, Zachary had a blast and I was so proud of him. When we got back, the training was over and the children were in the waiting room viewing the video. The DVD was a compilation of some news clips, training and demonstration clips, and beautiful views of Renshi Allie's trips to his Dojos in Costa Rica and Bermuda (and some of the surrounding countryside), and to his Master's Dojo in Japan. The Japanse scenes were very beatufil, with lovely background music. Peaceful. You got to hear the founder's philosphy and training methods. Believe it or not, Zachary was absolutely mesmerized! I swear there is some sort of subliminal brainwashing or something! Some of the other kids were starting to get bored of it, but Zachary just watched every move they demonstrated, and hardly even moved. He wasn't even upset when he saw I wasn't there when he got out of the room. He sat near Sensei Vinny and Sensei Kim and watched it quietly. He even wanted to see it again when we got home! Afterwards, the children went back into the dojo for pizza and soda, then they played some games with them (sort of a dodge ball game with small frisbee's, coasters, and mouse pads!) As I said, Zachary had a blast. Then as I was leaving, Renshi Allie himself asked me about my beads, which he referred to as Mala beads. These are beads the budhist monks use as a form of rosary for mediation. I told him my children made them for me and they were my first real mother's day present from them. He just smiled and nodded, and Sensei Vinny said something nice, and I almost burst out into tears right then. I quickly took Zachary to the car before I made a spectacle of myself. I have worn these beads pretty much every day since I got them, and they are pretty worn looking by now. I have had to re-string them a couple of times. I wear them so much I forget I have them. They are like my watch or wedding band. I do sometimes finger them and there is something comforting about them. Maybe the Budhists know something.

Still, I quickly recovered and we went to get Zachary a treat. He wanted to go to StonyBrook hospital and get mints from the gift shop! I knew it would be closed, and I have no intention of going there, so we went to CVS instead where they sell those Ghiradelli chocolate mints by the bag. He then saw the box of Junior Mints and chose them instead. Just as well, we all know I would have eaten the rest of that bag of Ghiradelli tonight! Junior Mints I can ignore.

I got home and there was a box on my porch. I forgot I was supposed to meet Sister Lynn from StonyBrook today after she got off work. She left me a message that we would get together another day, but she wanted me to have the box. It is just beautiful. It is a memory box for Kendall, softly padded, and there is a pretty plate on the front with his name painted on it. Inside there were some StarWars and animal stickers and a few booklets on grief and helping children to grief. There were also little cards handwritten by some of the nurses and doctors and other staff who treated Kendall. They recordeded some of their memories of Kendall and our family. I'll share some over the days, but I was just absolutely stunned and blown away. It was so beautiful. There were blank cards too, so we could put some of our own in. I read them with Zachary, and we cried a bit, but it was OK. We then ate some Junior Mints and watched the Ninja Warrior Spirt movie again.

Anyway, for those who missed it, I'll leave the link up to the Pat Brophy video for now. It honors her for being a great nurse, and you can see some short clips of Kendall, Zachary and me in the playroom at CHOP with her. It also tells of the sad news of her own battle with cancer. She is still working, even through her own treatment, to try and make the lives of these children and their families easier. Her contribution at CHOP cannot be ignored. She is the one who coordinated all the treatment and schedules and plans, and kept on top of the day to day progress of these children, relaying the information back to the doctors quickly and efficiently. It would have been difficult to be treated at two different hospitals if it wasn't for her! So here it is:
Pat Brophy Interview

If you are in the Philadelphia region tomorrow, get out to Alex's original lemonade stand. It will be a mini street fair and sounds like a LOT of fun.

******************************
Ninpo Ikkan (loosely translated means "Never give up", or "Keep going"

Thursday, June 7, 2007 9:23AM EDT

The CBS3 Philadelphia special is going on right now! If you live near Philly, take a look, it will be going on all day. If not, check out the weblink I provided below, as there are many video clips available there. It is absolutely beautiful and inspirational.

I am going to try to link to this video clip about Pat Brophy, our favorite nurse at CHOP who made such a difference in our lives. There are clips of Kendall, Zachary me and her from last year. Warning, it is very emotional. Have tissues therapists phone number on speed dial.

Pat Brophy Interview

If the link wont work, just go to the website below and find the banner for Alex's Lemonade Stand Special. The videos are available there.

**********************************
Wednesday, June 6, 2007 11:26PM CDT

The graduation/moving up ceremony was wonderful and touching as usual. This year Nancy had a great DVD made up with a photo montage of the kids from the center over the last few years. It was beautiful, but it was hard seeing those pictures of Kendall and knowing he isn't there. Everyone got a copy. Sophia's parents were there too, and Michael's mother also came. They also lost their children, but wanted to come and see the graduation anyway. I can understand. Kendall's presence was everywhere. Nancy had found a Ninja Turtle toy while setting up (she gave it to me). She said she was just thinking about Kendall and there it was. These losses have been tough on the teachers and other parents at the center too. Kendall was the fourth Morgan Center child to die in two years. Michael was last year, and this year we had Caroline, Sophia and Kendall. But that is all the more reason why we need a place like this! Our children would have died anyway, and without the Morgan Center, their lives would have been so much harder and emptier. They wouldn't have had the wonderful pre-school experience that other children their ages get. They wouldn't have had the friendships and as parents we would not have had the support we got. That was invaluable as well. It helped me be a better mom to Kendall. Nancy also convinced Sunrise Day Camp to accept younger children in a somewhat scaled down program (originally they were only doing camp for ages 5 and up). They gave us such a great summer for the boys, and are kind enough to give us another summer for Zachary.

The kids did their songs, and they were entertained by Theresa from Sillybrations again (she donates her time for most of their parties). Then the children were photographed. A professional photographer- Jennifer Mercurio of Lasting Impressions - took the class photos then did individual photos of the children. We will get a package of these in a couple of months. They have always been absolutely wonderful, so I am looking forward to this one as well. We had a great lunch, and socialized for a bit. Then we left. Carrie told me that when she went to the closet for something earlier in the day, Kendall's placemat with his name and photo was just sitting there on the floor. None of the other ones, just his. Definitely a sign. They gave both boys' mats to me. Zachary's says his favorite food is "broccoli". Kendall's says his favorite is "spinach". Too cute. The photos are a bit blurry, but their eyes are bright and beautiful. Imogene gave me Kendall's box from the class. Each child had their own box of supplies as part of the effort to reduce spreading of germs. There was glue and markers and crayons, and play doh. Kendall's playdoh was blue and yellow, and when I opened them, each container had a mottled green glob. He loved to mix colors and see how they made new ones. I can still see some of his fingerprints and handprints on the doh. I'm glad they gave it to me.

Neil and I went to see Gladys after the graduation. She is back in Winthrop and now has pneumonia. Her labs looked pretty good today, and the doctor was going to get a new xray to see which way things are going. They are concerned about her confusion, and she shook her head when asked if she knew me and Neil. But somehow, both of us felt she was not serious. I think she recognized him just fine. She loves to play mind games with the doctors. Then again, it is hard to say. But just last week she was speaking to Neil and asking about different members of the family.

I went to pick up Zachary at Ninja class afterwards, and Sensei Vinny came out with the top of his new Gi! Yes, Zachary has earned his uniform. He didn't have the right sized pants, but said he would bring them Friday. Friday will be exactly 30 days (four weeks) since he started. This is the minimum amount of time before earning your uniform for this school. Zachary really loves the classes and he is doing very well. I hope we can keep him in it. I think it is good for him.

We went to dinner to celebrate Neil's birthday afterwards. Just the three of us. Ruby Tuesday's. We missed Kendall there too, but we had a nice dinner. Really, we are doing OK. Yes, we are sad and miss Kendall, but there are moments of joy and peace as well. We are supposed to be sad and miss him. I think overall we are all handling things just fine. Zachary and I stopped by the cemetary and placed some new flowers for Kendall. He said that today, he felt that Kendall was with us, and not just "here" (he points to his heart), but "here" (he points a few feet away from him). He said that he felt like Kendall was right next to him all day, and he loved the graduation ceremony and was really happy Zachary got his Gi. Zachary then grabbed his imaginary hand and raced him to the car screaming, "Last one there is a rotten egg!" So glad you taught them that one Mom! This whole episode was not as disturbing as it sounds when I write it. On the contrary, I think Zachary was expressing how we all felt very well. His presence was just very close to us today. I think that is understandable.

Yes, we will be getting counseling very soon. Zachary is already signed up for a couple of things.

For those in the Philadelphia area, CBS-3 news will be holding an all-day Phone Bank for Alex's Lemonade Stand. Clips of our stand held last month in Kendall's honor will be aired, along with some of the interviews (maybe!). They will be also replaying their award-winning documentary, "A Stand for Hope", which also has some brief clips of Kendall, me and Zachary. They will send me copies at some point. More information can be found on their website: http://cbs3.com/local/local_story_145132819.html.

Anyway, we are really OK. It was hard today. There were some tears, but there were some laughs and smiles too.

**********************************

I got this from Tom Zuba's site. He will be speaking to the Angel Parents at the Neuroblastoma Conference in June. I won't be going, it is just too painful right now, but I liked a lot of what he had to say:


"You are the teacher you’ve been waiting for.
You are the one who can end your own suffering."


Byron Katie
Loving What Is
www.thework.com

Tuesday, June 5, 2007 9:20 PM CDT

Sunday was a great day for the Walk to Make the Sun Rise 2007! We got there late (again), but it was OK. Zachary arrived just in time to get on the train that lead the walk!






The kids sang a very loud and enthusiastic version of their theme song - "SuunnnRise DayCamp.... Iiiiittss, the BestCamp!" Very cute. Lots of claping and drums. We met up with an old Morgan Center friend Erik and his parents. Zachary was very happy to be there. I was a bit sorry Neil didn't come, but he just wasn't up to it. We had a rough night of little sleep, and he got up and started do some yard and garage work very early in the morning (like 6am). Cleaning the garage is tough as there are a lot of things from his dad and Kendall there. He was just wiped aftwards. Besides, we were running late as usual. When I got home I found he finally moved Zachary's bed into our room and his dresser into Zach's. This is step one in reclaiming our bedroom, and it was a huge success! Zachary slept peacefully the last couple of nights in his own bed, but still in our room. We were able to sleep much better without the kicking, elbowing and squirming. Step two is to clear out the office and renovate it for Zachary. This way when he is ready we can move him in there and he will still be able to see us if he gets worried.

Anyway, the walk was a lot of fun. I didn't raise much money this time, but I am grateful for those who did contribute. We just did too much fundraising in too short a period of time, and I felt like I really couldn't ask for more right now. Next year I will see if I can organize a group to come with us to the walk. It is a fun event, and they had pony rides (we missed these, but that's OK), cotton candy, popcorn, games and races, ice cream, a giant bouncy slide and bounce castle, and the Islanders were there with their hockey shooting game! There was a great turn out and I was very happy to see so many people supporting a great organization.

Tomorrow Zachary graduates from the Morgan Center. It is a very bittersweet moment for us. Kendall should be there too. It isn't right that he didn't get to graduate and go to Kindergarten! But life is not fair and we have to accept that. He did get to do a lot of things, and had a good quality of life no matter how short. We were blessed with every moment we had with him. Anyway, tomorow is a great celebration of a new episode of Zachary's life.

***************************************

I had copied this verse and devotion from another website a long time ago. I forgot about it, but found it this morning while I was looking for my resume. Yes, I will be starting to look for a new job soon.... time to get that resume polished!


"I have fought the good fight. I have finished the race. I have kept the faith. Now there is a crown waiting for me. It is given to those who are right with God. The Lord, who judges fairly, will give it to me on the day he returns. He will not give it only to me. He will also give it to all those who are longing for him to return."
2 Timothy 4:7-8


From the book "Traveling Light" by Max Lucado:

"In God's plan every life is long enough and every death is timely. And although you and I might wish for a longer life, God knows better.

And – this is very important – though you and I may wish a longer life for our loved ones, they don't. Ironically, the first to accept God's decision of death is the one who dies.

While we are shaking heads in disbelief, they are lifting hands to worship. While we are mourning at a grave, they are marveling at heaven. While we are questioning God, they are praising God."

Wednesday, May 30, 2007 10:53 PM CDT

This is such a tough time of year for me. Normally, I would write and write in the journal, to try to get some of this off my mind. But I've been keeping busy and trying not to think about it too much. Until today, when my car broke down and I needed to drive really slow to get to the service station and meet Fritz, who picked us up there to take Zachary to Ninja class (thanks Fritz!), and then I had a couple of hours afterwards while they took Zachary swimming and I went home with Neil to do some work around the house (thanks Mom and Fritz!). But all that free time got me thinking. Then I check my email and there is a request for photos from the news team that video-taped the Lemonade Stand for a special. And back down into that spiral of depression I went. I spent a lot of time looking at photos today. It is good for me though. I don't want to forget Kendall. I don't want Zachary to either. I don't really think we can.

But really, it wasn't the photos draging on me today, but the many "unniversaries" that occur around this time for us. (I think of anniversaries as being a milestone of something good... something to celebrate. An "unniversary" is the opposite!). Anyway, it was May 27, 2004 when I got the horrible news that Kendall had a huge mass in his abdomen on CT scan, and it was most likely Neuroblastoma. It was May 28, 2004 when they did the biopsy that confirmed the diagnosis, and placed the broviac line (among other things). That was Memorial Day weekend, and we spent it at StonyBrook. This was less than one year after losing my father to a sudden heart attack on June 4, 2003. The above photo at the Eisenhower Memorial was the following June 1, 2005 -- the day Mimi, my grandmother, died. Actually, that photo was taken within minutes of her death. We had gone to visit her in the hospital, and I took the boys up to see her and bring her an "Angel" prayer blanket. I am positive she was aware we were there, though she never regained consciousness fully. It was scary for the boys, and they were young, but I felt they needed to be prepared and to have a chance to say goodbye. The trip to the Vet's memorial was a good way for me to talk about the funeral and about veterans and how we honor them when they die. I explained the service to them, and when it came time, they were very good and very impressed by the military send-off for Mimi. Anyway, Mimi died within minutes of that photo being taken.

So I kept busy this memoral weekend by going on a trip to Dutch Wonderland and Hershey Park with Neil, Zachary, and our good friends Kathy and Jessica. We had a great time at Dutch Wonderland as usual, couresy of Give Kids the World, and Hershey was memorable, if not fun. It is too big a place for 5-year-olds! Actually, it is a great park, but we got stuck in the new water area for a long time. It is too hectic and crazy. Maybe in a few weeks when things setle down for the season it will be better. Memorial Day itself was spent with other good friends, Tom and Michele and their adorable 3-year-old Connor. Zachary and Connor had a great time on our new Slip and Slide! Zachary is getting better around their large happy boxer dog Layla. He is still nervous, but not nearly as much.

Overall we are doing well. Zachary will be attending some bereavement groups,and Neil and I will be going for some private counseling. But as a family, we are doing very well. We just all miss Kendall so very much. The foreverness of it is starting to really sink in now, and it is tough. But we still cope well.

On Sunday we will be doing a walk for Sunrise Day Camp. This is the only day camp for children with cancer on the East Coast, and it made such a huge difference in our lives last year! Kendall had the opportunity to go to camp like other kids. To learn those silly camp songs and play silly games, and to interact with the teenage and young adult counselors. It was such a great experience for him and Zachary. They are being kind enough to allow Zachary to continue to attend for as long as he wants (we will go for one session in the beginning of the summer, and one session at the end so he can have a chance to stay in touch with his friends from the Morgan Center). In between, Zachary will be going to a camp at our church to get a chance to get to know some of the local children (Thank you Uncle Dennis and Aunt Edwinna!). It is so very nice of them to let Zachary continue there. Without my salary, we really cannot afford much in the way of entertainment this summer. Anyway, I have done way too much fundraising in way too short a period of time, so I will not be actively begging for this walk. However, those who wish to donate can do so a: Sunrise DayCamp Walkathon 2007. Click on Sponsor a Walker and type in "Jackson" in the box. We are Aimee, Neil and Zachary.

Anyway, please do not feel obligated to give. I have received a lot of love and support lately, both financial and emotional. But it is a good cause and I would be amiss if I didn't at least try to collect some money for the walk.

Peace be wiht you all.

Thursday, May 24, 2007 7:53 PM CDT

I had to write another entry for today. Not long after I wrote the last depressing entry, they finished with the sprinklers and I went to go pick up my car. The first sign from Kendall that his spirit is near, was right on my lawn in the form of a large rock. It was just exactly the kind of rock that would have gotten his attention. It was about the size of a baseball and perfectly smooth and cream-colored. It had almost no dirt on it and was shaped like a large puffy heart! The back side of it was flat... as if someone had chiseled it in half. Weird. I put it in my front planting bed for now.

In case I wasn't convinced by that one, when I got into my car, there was his name! I looked at the disposable floor mat the mechanic left there, and it had a huge advertisement for Kendall motor oil! I didn't even know there was a Kendall motor oil. It just made me smile.

While I was having a rather crummy day anyway, I decided to go to the cemetery and order Kendall's grave marker. They use flat stones with brass plaques at this place. I had to pick out the wording and some decals to put on. I then stopped to put some new flowers on the grave, and found a yellow glass bead, about the size of dime. It was very bright and shinny and smooth... the kind of thing you sometimes see people put in vases. Funny thing is, while I was cleaning, I was dusting a vase of fake yellow roses that had been Neil's mom. I was thinking about how she loved yellow roses. Then I thought, Kendall liked yellow too (he also liked red and green at various times). I was just remembering the Mommy and Me classes we took at Miss Helene's house. He learned all his colors there, and he just loved the word "YLellow". Both boys mispronounced this word in such a cute way. And now, here right by his grave, a yellow glass bead from no where. You will even notice the yellow jackets the boys wore in the photo above. They loved these jackets, and when he had his broviac in, I used to put the rain jacket on him and let him run around in the sprinklers! I have some great photos of that. Maybe I'll post them tomorrow. As time went on, I became braver with the broviac care and let him bathe in the tub a couple of times a week. Then I would change the dressing. These were very happy times. He loved the water.

I felt a lot better leaving there than I had early in the day. Now I am just waiting for Zachary to come home.

Thursday, May 24, 2007 1:02 PM CDT

I'm having one of those days where I miss Kendall so much it actually causes physical pain. Zachary stayed at my mom's house last night (thanks Mom and Fritz!) because we were having sprinklers installed this morning and I had to drop my car off for service (way overdue!). So I woke up with neither of my kids here. But I was pretty busy first thing because I had to get coffee and money, and drop off my car. Then the sprinkler guys came and I was busy showing them where everything was. Then I started cleaning. This is my first day without Zachary in several weeks. My house really needed a good cleaning. I did all the things that need water first (bathrooms, kitchen), then they shut the water and I started in on the bedroom.

The boys bedroom. I have been just piling stuff up in there because I simply did not want to go through it. But sooner or later it has to be done, and now was as good a day as any. It is so very tough to see all those little clothes... many of which held special memories... like the sweatshirts Neil bought the boys at Great Adventure when we got really wet late in the day and they were Freezing!. Like his red Thomas shirt which he wore so often the seams were starting to loosen. Like his favorite hooded shirt. Like his Teenage Mutant Ninja Turtle boxer shorts.

We didn't do much this week. Zachary had a nice time playing with his friend Sean on Tuesday, but he bashed his face on the hammock stand and ended up with another bloody nose and lip. He went to Ninja class later that day, and it started bleeding slightly again, but it stopped and he was able to finish the class. There were parties at the Morgan Center on Monday and Wednesday. Not much else going on. Zachary has been doing OK, though now he has started to talk to Kendall more. He holds entire conversations and seems to be "playing" with him. Hopefully this is normal. It seems OK. He doesn't seem distressed so I'm not inclined to do much about it. He'll be going to grief programs soon anyway.

Memorial Day weekend is always a hard one for me. Kendall was diagnosed on May 28th, 2004. It was Memorial day weekend. We ended up spending that weekend in the hospital while Kendall recovered from surgical biopsy and other tests. They started chemo later the next week. I knew the disease was aggressive, but he always did so well with chemo and responded so well, I never really believed he was going to die less than three years later. It seems so wrong. I was so happy to have twins, and I just loved being his mom. I didn't even think I wanted to be a mom. But I was just so happy. Then it is all over, and there are times when I am sort of happy again... when I can enjoy things. But there is still this enormous emptiness that seems endless. I am grateful I still have Zachary though.

I am going back to cleaning now.


******************************
John 11:35 Jesus wept.

Sunday, May 20, 2007 11:29 PM CDT

Today was the open house for Sunrise Day Camp. It was also a Sunrise Sunday (I really should read the fliers they send a little better!). Luckily, the very understanding Michele Vernon had no problem adding Zachary into the groups at the last minute. Which was good, because he wasn't leaving without a fight! We got there and it was just a beautiful day. Right away he saw a lot of his old friends and started to work on a drama skit with them... up until he saw Trevor, Morgan's brother, running over to tell him the good news.... someone donated a bunch of arcade video games! The game building (there are two now, they will set one up just for the teens to hang in), now has several arcade games along with the knock hockey and board games. Michele wisely said they will be putting time limits on that room!

I forgot lunch, but we went across the street to the deli, then I brought Zachary back and watched the plays with him. He joined in the second one without any practice. It was "Where the Wild Things Are", and he has had plenty of practice being a "Wild Thing"! No problem. Again, the counselors there are just so acomodating. I myself spent the day walking the tours with various friends who came. I was thrilled to see one of my co-workers whose son also has cancer, and some old friends from the Morgan Center (old as in I haven't seen you in a while.. Michele!). I finally convinced Zachary to leave after a snack of cookies and ice cream.... but it was tough even then!

He spent the rest of the day hanging out with Neil while I caught up on some paperwork. Well, I tried... I did not succeed!

Anyway, I will be doing a walk for Sunrise on June 3rd. I do have a donation site which I will post eventually, but I have already taken some of the money donated to me and used it for that. People have been very generous this year, and I am not going to seriously fundraise for them this time. We are happy enough just to be going to spend the day with them and show support for all they do. Next year I will spread out our fundraising drives a bit better.

To clarify my point about the ACS. I am not against the organization nor do I think people should not support them or that people should feel bad for doing their Relays and other fundraisers. You don't need to justify your choice to me. My issue is with their active recruitment of children to be their honorary chairpersons and to do the fundraising for them, while giving such a small percentage of the monies raised towards children's cancers. They have somewhat increased their funding towards childhood cancer since those 2003 numbers, or so I'm told. I also should note they finally awarded a grant for neuroblastoma research - to Dr. Yang at Baylor College (Yeah!). Our listserve group tried to persuade the ACS to consider increasing their funding of childhood cancers. We couldn't even get them to put an "I fight Childhood Cancer" as one of their special web badges (they have badges for breast, lung, colon, ovarian, prostate cancer, and for cancer survivors and special relay for life badges, but none for pediatric cancer). I never got a response to my letter requesting one.


OK, off my soap box again. I"m going to stay off for now!

Saturday, May 19, 2007 8:28 AM CDT

It is with great sadness that I have to tell you that the beautiful Penelope London died early this morning.



She was one of the bravest little girls I have ever met. She fought hard for over three years, and was a pioneer of many new and inovative treatments. Her parents searched high and low for a cure, and even helped fund some of the research that bought her additional quality time, and has continued to bring some quality to other children's lives. They have pressed politicians and drug companies to do something for these children who have no chance. And through it all, Penelope had a ready smile and cute giggle. Her journal is hard to read, as it is very descriptive of some of the horrors she endured. But I think everyone should read it and really understand just how bad it can be for these kids, and why we so desperately want a cure; why we are constantly asking for more research money from government and private funds.

I was talking again yesterday to my friend about the American Cancer Society and why I choose not to support them. It is simply a matter of advertising. They actively recruit children through schools and pediatric oncology clinics to help with their fundraising, because they know people are more likely to give to children than adults. And yet the amount of money the spend on pediatric research is so small it is appalling. It is false advertising in my mind. Less than 5% of their research dollars goes to pediatric cancer research. The do run some camps and support groups for children, so there is some additional money there. But of the close to 1 billion dollars in 2002-2003 (the latest numbers I have.. If anyone has more recent ones please let me know!), $132 million went to cancer research, and from that only $7 million went specifically to pediatric cancers. I am not trying to put down those who choose to support the ACS or run in their relays. I don't want people to think I am putting them down. I just want people to see them in the correct light. There are other organizations that support specifically childhood cancer, such as St. Baldrick's and Alex's Lemondade Stand and St. Judes, among others. I think this is all best explained in an editorial by . He lost his daughter to NB over two years ago. His wife and mother-in-law also have battled breast cancer.

Anyway, off my soap box for now. I had a bad day yesterday. I woke up and yelled into my room, "Come on boys, we got to get to the Morgan Center!"... then realized that there was only Zachary. He got an extra 15 minutes of sleep while I re-composed myself. We were late, but he had fun there. Later we went to sign up for marrow donation at the drive in Lindenhurst. For those who were unable to make it, you can sign up at www.marrow.org, and they will tell you where to get the testing kit needed. After that Zachary went to Ninja class... and the twins were there again. It is really hard for me to see these two beautiful boys... about 6 or 7 years old, together in the class. My heart just breaks that Kendall didn't get a chance to do this. I went home and Neil was out helping a friend with his computer, so Zachary and I ate, then we played with a new model toy maker kit. It was really cool, and again, I wished so much Kendall was there. He was just on my mind all day. I spent a good half-hour while Zachary was otherwise occupied crying over some pictures of him. Hopefully today will be better.

We're doing OK. Zachary is keeping very busy as usual. Mostly we are getting out to the local parks and playing. Zachary has been disturbing some of the other mothers on occasion by talking about his brother to their children. This isn't a problem for our friends who know us, but strangers we meet at the park get uncomfortable when Zachary tells their children that he has a twin brother, but he died. Sometimes he goes on about how much he misses him, or how much he liked this particular park. The kids simply nod their heads and go on playing, but a couple of the mothers looked upset. Oh, well. These comments are hard on me, but I don't see any way to stop them without causing more distress to Zachary.

Zachary is still loving Ninja class, and now is learning some basic kicking and punching techniques. I am working and getting him to not demonstrate these with other children, but to only practice in the dojo or at home. So far he hasn't injured anyone yet.

Tomorrow I will be at the Bone Marrow drive in Lindenhurst:

Bone Marrow Drive
May 18, 2007 2pm-9pm
Margaret McKenna Administration Building
AP room
350 Daniel Street
Lindenhurst, NY 11757

REGISTRATION IS FREE - CHEEK SWAB ONLY, NO BLOOD WILL BE DRAWN!!!!

PLEASE SPREAD THE WORD - HELP SAVE A LIFE

This is being organized by the sisters of adorable Jacqueline Rose, who is fighting AML leukemia at CHOP. Please keep her in your prayers, as she is having a tough time. She does not need this marrow personally right now, but her sisters want to be involved in helping other children with cancer as well, like her friend Harrison. The drive is in honor of both children. The registration is only a cheek swab, so no pain there. If you are a match for someone, then the donation may be from marrow or from peripheral blood stem cells. The different methods are described at www.marrow.org.

Also, for those who are pregnant and who do not want to or are not able to have their child's umbilical cord blood stored, they have a cord blood donation program. Click on the above link and click on the Center for Cord Blood icon. Donating cord blood does not affect the birth process, it is done after the birth, and it is something that is usually thrown away. There is no cost and it can be used to help save lives.

For those who have a child with cancer and you are pregnant, you can have the newborn's cord blood saved for free. For information check out this link: Viacord.

I hope my links are working today. Email me if you need the information and if they are not. I hope to see lots of people at the bone marrow drive. These two young girls are putting a lot of effort into helping other children and deserve a good show of support.

Sunday, May 13, 2007 11:55 PM CDT

Happy Mother's Day to all the mom's out there and the people who love them. I'm sorry I probably won't get on everyone's guestbook tonight, but I kept really busy today and I'm just too tired. Maybe tomorrow.

The Day of Hope fundraiser was a HUGE success. I can't tell you how shocked I was at the whole thing. I had no idea it would attract so many people from our local community, and it was great to see our friends and family there as well. Cindy Merkler did a fantastic job of organizing it. She is truly an angel here on Earth sent to lift my spirits and rewnew my faith. I have to say my church has been wonderful and supportive in more ways than I had even imagined. Many of my friends and family members have commented to me on how wonderful it was and how impressed they were, both with the funeral services and all they did then, and with the fundrasier. I have some fantastic photos, and I promise to get them posted soon.

CBS News from Philadelphia sent a camera man to film the stand and interview us. He was also quite impressed by the whole event. The lemonade stand was meant to be separate, and we managed to raise $1030.00 between the online and in-person donations. This was over our goal and I thank everyone who gave to this wonderful organization. The research they support will hopefully find some cures soon. All their funds go to support pediatric cancer programs.

I have a "sign" from Kendall to share with you. Actually, two I think! The morning of the fair I picked up a huge basket of coloring books and little puzzles that I was donating to be raffeled or given away. Underneath it was a little plastic frog. I don't recall ever seeing this one. But it made me think of Kendall, and I think that was its purpose. I displayed it on the stand and gave it to Zachary when we got home. My guess is it will turn up again at some other point when I least expect it. Secondly, there was the tent that you can see in the photo above. I had been looking for a quick canopy to use for our lemonade stands (I plan on holding them at least once or twice a year), and in for our general use in our yard. The one I wanted cost about $120.00 and was only available online. I found a similar item at Walmart.com for $89.00, and the site said it was available in the stores. It didn't look as easy to set up, but I figured it would have to do. However, before I went there I had to stop at Linen's and Things to exchange our lemonade dispenser that my mom had bought (it had a crack in it). When I walked in the door, the first thing I saw was the exact quick canopy tent I wanted (though in a different color)! And it was only $59.00! A huge bargain. It set up and came down very easily, and served its purpose well. It even has a cary bag!

I'll talk more about the fair and post photos later in the week, but I wanted to talk about Mother's Day. The first one is always the hardest they say. This was a hard one, but it was made easier by my family and friends, and especially Zachary, who was truly a joy today. We went to Church this morning, and Neil even made an appearance. He went to visit his aunt in the hospital afterwards, and the rest of us went to the cemeteries. First to Calverton to place flowers by Neil's mother and father, who are buried together. Then to Washington Memorial to place flowers on Kendall's grave. All the things we left last week were still there, so we re-arranged them and placed new flowers. Zachary started running around with a small group of kids, climbing the odd tree near Kendall's site. Mom was a bit distressed by the noise and a little worried about the tree, but I thought it was great. Kendall would have been right in there with them if he was alive. I just know he would love to see the kids running around near him and climbing his tree. They can't really hurt the tree. It was tough though.

After that Neil met back up with us for dinner at my mom's. Fritz barbecued some steaks I picked up, and mom made the salads and sides. Then I took Zachary in the pool and there were LOTS of kids there (mostly with the fathers... I guess all the mom's were enjoying some time alone!). Zach had fun swimming and met a real cutie named Kirsten. She is 6 and losing a tooth. Very cute.

So there was my day. Mostly pretty good, though that big empty spot is still there and as big as ever. But I enjoyed my day as best I could, and hopefully my mom did too.

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Here is a beautiful poem that was sent to my mom by my cousin Julie. She forwarded it to me. I've heard it before, but I find more meaning in it each time I read it:



Before I Was a Mom

I never tripped over toys or forgot words to a lullaby.

I didn't worry whether or not my plants were poisonous.

I never thought about immunizations.

Before I was a Mom - I had never been puked on. Pooped on. Chewed on. Peed on.

I had complete control of my mind and my thoughts.

I slept all night.

Before I was a Mom I never held down a screaming child so doctors could do tests.

Or give shots.

I never looked into teary eyes and cried.

I never got gloriously happy over a simple grin.

I never sat up late hours at night watching a baby sleep.

Before I was a Mom I never held a sleeping baby just because I didn't want to put them down.

I never felt my heart break into a million pieces when I couldn't stop the hurt.

I never knew that something so small could affect my life so much.

I never knew that I could love someone so much.

I never knew I would love being a Mom.

Before I was a Mom - I didn't know the feeling of having my heart outside my body.

I didn't know how special it could feel to feed a hungry baby.

I didn't know that bond between a mother and her child.

I didn't know that something so small could make me feel so important and happy.

Before I was a Mom - I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.

I had never known the warmth, the joy, the love, the heartache, The wonderment or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much, before I was a Mom

Thursday, May 10, 2007 7:17 AM CDT

I would first like to wish my mom a very Happy Birthday! She does a lot for us and has been an absolute rock of support during the last three (OK five... OK 40!) years. I would not have been able to do as much for my kids as I was without her.

Zachary is a natural born Ninja! He had his first class on Tuesday and couldn't wait to get back. He just loved it. Sensei Vinny is very energetic and really gets the kids attention. This is not an easy in a group of 5 boys and one girl. The boys were very rambunctious and enthusiastic, yelling and laughing at times, but he always got their attention back onto him quickly, tolerated no disrespect, and got them to focus on their tasks. He did this without yelling at them. He spoke to them in a firm voice and often just a look was enough to get them back in order. Zachary fit right in, and had no trouble following the group. He watched carefully and imitated the different exercises well. He loved the defense techniques, where the sensei swings at the kids with a rather large rubber bat (meant to simulate a sword) and they had to move side to side, then duck quickly, then jump over it then back away quickly. Zachary did it very well for a first-time student. They also paired up and learned a foot sweeping technique, and some simple punches. Again, Zachary picked it up very quickly with just a few corrections, and was very excited at being able to do this. Then he rolled out a huge kicking pad and had the kids practice some kicks with nice loud kiais (yells). Zachary was very enthusiastic. He yelled so loud I swear they heard him at the Chinese restaurant two doors down!

All day on Wednesday Zachary asked when Ninja class is going to start. "Is it 4:30 yet?", "What time is it?" "We can't be late!!!" We went to visit Neil's aunt in the hospital for a few minutes (I snuck Zach in... got a bit smile from Aunta! She is in a regular room and doing better now) then to eat lunch. But Zachary could not wait to get to his ninja class and we were there ten minutes early. They did some similar exercises, and added in a rather interesting game of dodge ball at the end! Some of the more advanced students who came early were set at one side of the room, and the younger ones at the other were given blocking pads. The older kids threw little rubber tennis balls (they are fairly soft and don't hurt much) at the little ones who were to block or avoid the shots, then grab the balls and throw them back. Anyone hit by a ball in the strike zone had to do ten jumping jacks. I can't even tell you how much fun this was for the kids! Now a days, schools outlaw games like dodge ball because they think it leads to fighting. But this was a very good natured game and everyone had fun. Zachary was exhausted afterwards, but he just loved it. He was so excited to have done well. They always end and begin class with a bowing ceremony, and thanking the teacher and other students, and there is also some meditation.

Zachary cannot wait to get his gi. They start students in tee shirts and sweat pants (included), and the cute little tabis (slippers with a split toe). They earn their gi in about a month when they have shown they can perform some of the basic tasks. This helps the teacher to separate the newer students and give them more attention if needed. It also gets them right away started working towards a goal. On Friday/Saturday classes, they are having a take your mom to ninja class day. Us mom's get to work out with the kids! I can't wait. I absolutely love martial arts and maybe when I go back to work and we have a bit more money I can join too (though I might join a different type of class.... I am in no condition for ninja training!) Dad's get a special class for Father's day too. I'll have to mark it on the calender!

Anyway, I'll get photos up soon. I have to do some work on my computer first. The fundrasier at Hope Lutheran, "A Family Fair for Kendall" is on Saturday, May 12th from 1-4. It is at the church at 46 Dare Road. I will be there selling lemonade for Alex's Lemonade Stand (www.alexslemonade.org). The lemonade stand is separate from the fundrasier, and I may have a TV crew there to film it as an update to the TV special we did last year called "Alex's Stand of Hope". They are supposed to contact me today. This year the special will be an hour long and will update the four families featured in the first one (including us).

Also, Bone Marrow Drive (being run by Heather and Kristina)

THIS IS A CHEEK SWAB - NO BLOOD WILL BE DRAWN!!!
May 18, 2007 2pm-9pm
Margaret McKenna Administration Building
AP room
350 Daniel Street
Lindenhurst, NY 11757
PLEASE SPREAD THE WORD - HELP SAVE A LIFE


I am very sad to relay the news of another neuroblastoma warrior struck down way too soon. Bryan Tressler, AKA Flyin' Bryan was an amazing teen who battled this disease for ten years, only to be struck down by a bacterial infection that his body just couldn't clear. Throughout that time, he lived a very active life and accomplished a lot. He had a lot of friends and was an avid snowboarder. He became a junior instructor at West Mountain Ski resort even though the treatment and disease had knocked him down often. He kept getting back up and back on that board though. He was unforgettable for his drive, determination, and green hair (sometimes it was multicolored... but always very bright and distinctive when he had hair!). I had the pleasure of meeting him at CHOP a couple of times along with his terrific mom Mary Lou. These were brief meetings as he was always on his way somewhere else! But he had a great smile and warm personality, and my heart just breaks again for another family devastated by this disease. Just a couple of weeks ago they were so happy to announce that the new treatment they tried was working and he was starting to do better. It is heartwrenching. Please keep Bob and Mary Lou in your prayers, as well as his brother and sister, Jen and Bobby.

For those who asked, Penelope is still hanging in there and her father still seeks new treatments for her. She has a lot of pain and dizziness, but she still gets up and out now and then. He wasn't able to get the treatment that the Wall Street Journal article spoke of, but it did get some attention and he was contacted by some about different agents they could try.

Please keep children with cancer in general in your prayers. These kids go through so much and fight so hard. It is hard to describe some of what they have to endure, often on a daily basis. And yet they want to live and love and laugh and play just like other kids.

Monday, May 7, 2007 9:35 PM CDT

Happy Birthday my sweet Angel Kendall. Also, a very happy birthday to Zachary.

It is hard to explain how I feel celebrating Zachary's birthday without Kendall. Sorrow and pain and grief don't really convey the array of emotions. For the most part, we had a good day really. I decided that I needed to focus on the happiness of Zachary's birthday, rather than on the pain of our loss. So I "celebrated" Kendall's birthday yesterday. After church we did some chores and shopping, then Zachary ran around a bit with Neil. Then I took him with me to the cemetery. However, a very exhausted Zachary fell asleep in the car almost before I left the driveway. The night before, he played all day at Connor's party then back at his house (much of it, with the very energetic Emily. He still loves her and she is still a real ball of fire. The pretty little thing bashed the pinata right off its rope!). This worked out well really. I was able to spend some time by the grave re-arranging the flowers. I am not really a flower person. But, having no other suitable way of commemorating the occasion, I picked out some really bright and gaudy daisies that I knew Kendall would have loved, put a small green Happy Birthday teddy bear on them and arranged them in the holder. I sang Happy Birthday to Kendall, and some of his favorite hymns, and just sat there and cried and talked to him. Luckily, it was pretty cold out so Zachary was fine in the car (we are right near the road). He never even budged.

I let the sorrow go, and left determined to make sure Zachary had a happy birthday. Believe it or not I succeeded in this, thanks to the wonderful families and teachers at the Morgan Center and Theresa from Sillybrations who did some of her best entertaining yet. Thanks also due to my poor mom, who provided the food for the parents, but ended up forgetting it and having to drive all the way back home! She made it back in time though. A lot of the kids from the center were there, and the party was very nice. I'll get some photos up soon. I left my camera at home and had to borrow my mom's. So you have to wait until I can get it back and download the chip.

Kendall was not far from Zachary's heart. He mentioned him several times, and sent him a balloon. Then, Kendall apparently took the best balloon for himself! Neil tells me the Darth Vader balloon somehow untied from its string and went flying away. All the other regular ones he was carrying were fine. Figures. Zachary and I went to visit an old Morgan Center friend Daniel (thanks Cindy.... we had a great time). Zachary and Danny played for a couple of hours and really had a ball with the fake plastic bugs. This was the most hysterical laughter I've heard from Zachary in a long time. It really made me feel good.

We planned on eating out, but Zachary fell asleep when we got home and was just completely zonked again! I mean knocked out. After much debate, we ordered out from Ruby Tuesday's and I picked it up (thanks Victoria and Gen for the gift certificates!). Neil and I watched X-men Three, while Zachary slept. He sleeps still now. This is probably a good thing. These are more normal sleeping hours for a little boy (he got up at 5:30 am this morning though!.

So I actually went the entire day with my emotions in check, until I started to scan photos to find a suitable one for today. It just breaks my heart that Kendall couldn't get that 5th birthday. We really thought he would. I am grateful for the four terrific birthday's he had. Often, he had more than one party for each birthday, so maybe that made up for it a bit. Kendall knew he was very loved by a lot of people, and he loved everyone too. We talked about that late at night sometimes. He would have me cuddle with him and he would name the people he loved and I would assure him that they loved him back. He would nod and smile. The last time was just a few nights before he died.

It is hard to celebrate Zachary's birthday alone. But it is also important. Zachary has had to share his birthday's up until now.... often as the "supporting actor" to the "Star". Kendall's condition meant he always got just a bit more attention than Zachary. Zach took this very well most of the time, though he did act out now and then or declare the unfairness of it all. But for the first time Zachary didn't have to share the stage.


Yesterday I got to hear Kendall's voice again by surprise. A friend had given me a bear that you can record voices in. I never really got around to it, but Kendall had been playing with it. When I hit the "play" paw, I heard Kendall's voice clearly saying: "Mommy, I can't figure out which one is record button!" He had that slightly annoyed tone of voice when he is getting frustrated by something. I was so thrilled. It was just beautiful. I took it to Neil so he could figure out how to preserve the recording.... and I hit the wrong paw erasing it forever. I was quite upset at the time of course, but I have moved on. It was one of those little unexpected surprises. I am glad that I ruined it myself, instead of Zachary or Neil, because I would have been unfairly angry at them. I do have other recordings of Kendall that are on better media. I'm just glad I got to hear him if even for that brief second.

I still can't explain how it feels today. There are supposed to be two of them. But there is one. And I am eternally grateful for the one beautiful child I still have, and for the time I was granted with Kendall. I'll tell you what I told him sitting there beside his grave. I thanked God there and then for sending me such a perfect child to love and care for. I thanked Him for finding me worthy to mother this special child and his brother. I told Kendall I was sorry I didn't have the magic words or faith or whatever it would have taken to find a cure for him, but that I would dedicate my life to finding it for other children like him. I told Kendall that if I had been granted the choice of getting to pick what kind of children I would want.... I would have chosen him and his brother exactly as they are. There is nothing I would have changed about him, other than to have wished for more time.

Anyway, that is it for me for now. Please keep the amazing Penelope , Carter, and Erik in your prayers, along with our fellow twin warrior Emily.

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The passage of the day from Bible Gateway: ... somehow it is appropriate.

“Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.”- 1 Thessalonians 5:16-18

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Happy birthday Cathy, thanks for spending it with us. And really, you do look pretty... a cookie wouldn't lie!

Saturday, May 5, 2007 7:00 AM CDT

I'm getting ready to celebrate some birthdays today and will have some new photos up soon. Zachary loves to go to Connor's birthday parties, because he hopes he gets to see his "girlfriend" Emily. We only see her once or twice a year, but he is absolutely infatuated with her! He met her first when he was only three, and he talks about her year round. Anyway, happy third birthday to Connor. We are always thrilled to see you and your parents, even if Emily doesn't come. (Zachary would be kicking me right now if he could read!)

I would also like to wish a Happy Birthday to my friend Cathy. We are taking her out to dinner tonight. Neil is getting yet another guys night with Zachary.

Yesterday I finally cleaned out my front planting bed. It was so choked with weeds, you could not see the bushes underneath. There were only four surviving bushes,which I ended up digging out, pulling the weeds out from the, and replanting. I have determined that the little white rocks that I so loved the look of have to go. I will replace them with proper mulch. They just never really covered enough to keep the weeds under control, and when leaves or dirt get on them they look terrible. Even a few leaves makes them look bad. So if anyone wants them, please give me a call. You cart them away and they are yours. Otherwise, I think I'll just bury them under some topsoil. Too much trouble to dig out. But first, I have to take down the ugly tree. It covers the spigot in front of the house and is just very annoying. That will be a project for next week. I'll see which of my bushes survives the weed attack and replanting, and then I can get some plants to fill in where needed. My next outdoor project is the mass of disgusting weeds and rose bushes along the side of the property. Some order must be brought to bear over there.

So really I am keeping busy and feeling OK right now. While I was digging out those weeds, I came across some large rocks in one of my shrubs, and it lead me to yet another cute Kendall memory. Kendall had a great fondness for rocks. He picked them up wherever he went. He especially liked large ones. Mom and Fritz used to take the boys to their very rocky beach during the off-season and let them throw rocks in the water. They always took some home. Zachary accidentally broke Kendall's hand when he was playing with a large rock in our planting bed (they often stored them there with their other "rock friends" and I told him to stop throwing the rocks and drop them. OK, I kind of yelled it at him and he got startled and tossed the rocks up in the air....where it landed exactly on poor Kendall's hand which was laying flat on the railroad ties. He managed to break two fingers! Poor thing. That was another fun Saturday spent over in the ER at StonyBrook. Anyway, I no longer let them hold large rocks in the car, but when they collected them I would give them back when we got home so they could put them in the rock bed. Kendall loved to play games of standing on the stoop and trying to hit the bushes with the rocks. He had great aim, and I found quite a few large rocks wedged into the shrubs. I also found some small toys and several tootsie roll wrappers.

After that Zachary and I watered the yard and I let him run under the sprinkler. We did some work around the house after that, and I actually managed to cook dinner and set the table for a proper meal (yes I can cook, I just often choose not to!). So that was our day. We will be celebrating Zachary's birthday at the Morgan Center on Monday. Zachary's gift from us is ... Ninja classes! Yes, Ninjutsu. It is a very misunderstood martial art. Zachary loves the black uniforms and there is a school nearby. We feel that this will be a good outlet for him. He already does a lot of the martial arts moves he sees on TV, and I think it will be good for him to learn to do things properly, and learn the discipline and responsibility that goes along with it. I am a big fan of martial arts for children, and love the Japanese styles.

Anyway, that is it for me for now. Please keep the amazing Penelope in your prayers. She is still fighting strong. Also my friend Carter. We just love his spirit and enthusiasm. He has a great family too. Keep them in your prayers they are tired and have fought hard beside him. Lastly, I wanted to tell you about an amazing your man named Erik.
He was initially treated 13 years ago, and had many bad signs, but he made it through to NED status. Then he relapsed, twice. He faces a real crossroads now, and has decided to put his faith in God. After reading what he has to say, I am just amazed at his strength and faith. Please pray for his loving family too. I have never met these people, but his mom has been very kind to me and a real inspiration.

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"Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him and He shall direct your paths."
- Proverbs 3:5,6

Thursday, May 3, 2007 9:14 AM CDT

Aunt Gladys is doing better and off the ventilator. Thank you all for your kind words and prayers.

Zachary and I had a fairly good couple of days. On Tuesday we went to the park and played with Cindy's youngest son Sean. She is the kindhearted person running the fundrasier for Kendall on May 12th. She has papered the neighborhood with fliers, and is working on painting signs. I don't know where she gets the energy. Her son is a real cutie with tons of energy too! He absolutely ran Zachary into the ground. This is a good thing. Zachary has needed a good run! When we left them I finally dropped off my clothing at Dress for Success. They are another great organization that collects business attire for underpriviledged women re-entering the workforce and need interview outfits and clothes to start to work in. I had a few things that didn't fit, and got some from a friend, and brought them by. I also brought a pair of shoes that they said would be good for the prom dress collection they do at the youth services next door. So if you have good shoes you don't wear, dresses that would be suitable for a prom (good use for those old bridesmaid dresses!), and or accessories (unopened pantyhose, costume jewelery, purses, jackets, scarves, etc), let me know and I'll drop them off for you. They are located pretty close to me.

We went to Walmart after that because I just don't have any clothes that fit Zachary either! He is now a size 6 in pants. He is getting big so fast. He is a 5-6 in shirts too. No more toddler sizes for us. So I got him a couple of things and he put them in the wagon under his head and fell right asleep! (Thanks Sean!). He napped while I checked out some gardening stuff and things for the house. I didn't buy them yet because I have to prepare the planting bed first (by that I mean dig up that nasty pile of weeds in my front yard, and put some dirt in.... maybe take down that ugly tree too). But I have an idea of what I will need and how much it will cost now.

Wednesday I went to the Morgan Center with Zachary. Mom picked him up so I could get to the bank and visit with Gladys for a bit. On the way I called the social worker that Nancy had recommended and set up an appointment to discuss bereavement counseling. The first question she asked was how are we doing (me, Zachary and Neil). I just don't quite know how to answer that. I mean, in many ways we are just fine. I am functioning very well overall. I get up. I eat. I get Zachary up. He sometimes eats. I get dressed and get out of the house to do things - or do things around the house. Zachary goes to school and to play with friends. I even got out and enjoyed some time with my friends. I can laugh and smile and talk. But there is just this constant weight that is dragging me down. This huge emptiness. I still can't believe I will never see him again. Never hold him. Never hear that laugh. I try to keep my emotions in check around Zachary, because it upsets him too much. I want him to be able to express himself without fear of setting me off. But I have no idea how to answer his questions. I don't want to even hear them. But I do it. What choice is there? I hear him playing with children behind my mom's house, and he talks about how he has a twin brother, but he died. On the way to the Morgan Center this week he wanted to know what Heaven looks like and what God looks like. He asked if there was any way we could just visit for a little while even, just to make sure Kendall was OK. And here I am driving in the car, I can't even hug him! But I do the best I can. I tell him that in Heaven we have whatever we want, need and love. We are promised no more pain, no more tears, no more suffering, only light and love. So I ask him what he thinks Kendall's Heaven would look like. He came up with a something like a beautiful park, with lots of hills, and swings, and climbing equipment, and a roller coaster and log flume. Sounds good to me. Oh, and lots of quiet little animals that are very friendly. And Whiskers and his grandparents (Mimi, Grandpa Reggie, Grandpa Frank, and Grandma Helen) to take him on the rides.

So is this healthy and normal? Probably. But Zachary won't sleep by himself. He gets very angry at times. He hasn't been eating all that well. I am now officially the fattest I have ever been. I can't seem to stop eating junk food. Neil is probably doing somewhat better than me with the eating. He is throwing himself into his work. But he forgets things and loses things. He gets annoyed at minor things. But being a typical man he mostly keeps it to himself. On the surface, he seems just fine. People are amazed at how strong we are. Amazing. I don't feel strong. I feel like crawling into the ground right next to Kendall and letting them just cover me with the dirt forever too. Zachary and I went to put some flowers on Kendall's grave. It is really a pretty place. I may consider posting a picture soon. They have smoothed over the dirt and are preparing for grass. Too bad we can't seem to get the wording on the marker yet. How do you sum up a life in four-six words? Oh well. I know where it is. Marker or not. My mom put a little wooden cross there that will probably be taken away tomorrow. They left the silk flowers though. They prefer fresh cut there. Everything gets thrown out once a week.

On the bright side, we are somehow managing to hold it together as a family. I know that it isn't uncommon for couples to have a hard time after the death of a child. We are both being very understanding with the other and accepting our different ways of handling things.

So how are we? Really? Fine. We are fine. Really.

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My Kendall memory for today comes from his brother Zachary! We were out in the yard, which is almost looking good right now, and Zachary was playing on his slide which was recently power washed (thanks Tom and Michele!). He was looking all over it for something, and I asked him what he was looking for. He said he was looking for Kermit. I had to think a minute, I was thinking of a frog at first, then I remembered... "The Inchworm?!" Yes, that was it. Kendall had named an inchworm Kermit last summer (Ok, it was probably several different inchworms, but I was not going to tell him this). I explained that inchworms don't live very long, but new ones will come out in the summer. He said that he thinks Kendall is taking care of Kermit in Heaven. Too cute.

It reminded me of another worm story. When we were at the Philly RMH (just me and Kendall on this trip), Kendall was riding his scooter down the little hill in the courtyard between the buildings. He suddenly stopped and stared at the ground. I went over to see what it was, and there was an earthworm struggling on the bricks in the sun (It had rained in the morning, but was drying up now). He felt bad for it and I said we could put it in the dirt where it could go back to where it belonged. So I picked it up (yuck!) and put it in the dirt by the bushes. Kendall named it Squiggles. We went on with our day and I forgot about it. We went back outside later in the day, and Kendall immediately ran to the planting area where I put Squiggles. He screamed and cried pitifully. There was poor Squiggles, quite dead and dried up on the edge of the planter. Kendall was very upset. I said we did what we could, but it must have been his time. We buried Squiggles in the dirt.

Kendall really was such a little boy!

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Penelope and her father's quest for treatment was featured on the front page of the Wall Street Journal. I have the article if anyone is interested. I can email it. I am not even trying to link it here. You can visit her website at www.caringbridge.com/ny/penelope. Send her some love and prayers. She is still hanging in there the little fighter! Carter is feeling better, but at the end of treatment. www.carterfinger.com.

I am amazed at the response to the Lemonade Stand for Kendall! I really didn't expect people to donate much after all the other requests for donations I have made lately. It is a great cause and much of the research that Kendall benefited from, especially once relapsed, was at least partially funded by this organization. Thank you to all who contributed. We haven't even sold a single cup of lemonade and I already am more than halfway to goal! (I just picked the goal as a round number.... I think it was the default on the webpage!... never really expected to reach it)

To give to Kendall's Lemonade Stand: http://www.firstgiving.com/kendalljackson

Reminder: May 12th is the fair at Hope Lutheran in Kendall's honor.

May 18th is a bone marrow drive in honor of another little girl from the Morgan Center - Jackie. It is just a cheek swab and they will wave the fees for testing. That will be at the high school in Lindenhurst. I'll post the directions and times closer to that date.

Monday, April 30, 2007 10:28 PM CDT

The doctors determined our Aunt Gladys is suffering from sepsis - probably from a UTI. After dialysis and antibiotics, there has been some improvement, though she remains on the vent. I went to visit and she did respond to my voice and touching her hand. It was subtle, but I could see she was trying to look at me and her heart rate, breathing and blood pressure fluctuated. She turned her head slightly to look at me when I spoke too. She is on versed and that keeps her comfortable and quiet so she does not fight the vent too much. The doctor was pleased that her blood pressure normalized and her urine looks better. He feels she does have a chance and they will continue to treat her.

Zachary had fun at the Morgan Center, then playing with some other kids at my mom's house. I took him swimming after that, and that as where the memory choose to hit me. It somehow reminded me of when we were at Give Kids the World village in the pool. First the boy ran through the sprinklers for quite a while. Then they went swimming. One of the photos above shows Kendall with Fritz in that pool. He ditched the inner tube after a while and practiced swimming UNDER water. He would dive down again and again, and would come back up. This scared my mother as she thoughtt he was goign to drown. But he did it several times, and she screamed each time! He was fine really. We were right there next to him. Kendall loved the water and loved to swim.

Anyway, I'm really tired. I am reposting the end of yesterday's entry with all the prayer and donation requests.

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Keep Penelope and Carter in your prayers. I am sorry for the lack of links... I just am too tired for it. I'll do them another time.

To give to Kendall's Lemonade Stand try: Kendall's website is: http://www.firstgiving.com/kendalljackson . Those who cannot make it to the stand can donate there if they want.

Sunday, April 29, 2007 8:55 PM CDT

I'm pretty tired today, so I may actually be brief (I know.. fat chance!)

On Friday night after the Morgan Center, Zachary and I visited his friend Andrew, and played with him and his little brother Logan (thanks Melissa!). They boys had a good time, thought they were a bit tired. It was a yucky rainy day. Zachary was thrilled to have his Spiderman umbrella. However, rather than use it, he choose to stand in the water under the eaves and get soaked.... while swinging the umbrella all over the place. Anyway, he went to my mom's for the night, so I could go out with some of the other Morgan Center moms and Neil could get a night to relax and watch some boxing. Neil has been working late trying to catch up and he was pretty tired.

The Morgan Center moms had a great time at Snaps.... a new restaurant in Wantagh. Good food and good friends. It was nice to get out and just be normal (or as normal as I ever get) for a change. A good distraction. Thank you to all who came, and to Mary Ellen for organizing it. A special thank you to my friend Emily who recently lost her beautiful daughter as well. It was good to see her. It is very hard for us to just keep going on, and she reminds me to accomplish at least one thing a day.

On Saturday we took Zachary and Jessica to Boomers.... a kid play place. They went on the rides and played all the games and had a lot of fun. Neil loves playing video games and I think even he had some fun too. We went to hang out with some friends after dinner (thanks Rob and Linda), and we all ended up staying up late. I am still struggling and feeling a bit awkward. It is hard to hold a conversation without talking about "the kids" or "my children". I still see and think of them as two. It is very hard for me to think of Zachary as being an only child. This was something we really didn't want. Neil was an only child and always wanted to make sure he had at least two kids. We did, but now poor Zachary is still alone and not even used to it.

He is handling things well I think. Just now he was standing next to me drawing pictures of him and Kendall. He talks about Kendall more now, and says he wishes he could just hit the restart and have Kendall back again. Or he talks about the kinds of things he will do when or bring he goes up to Heaven to be with Kendall. Sometimes he says things like "I miss that little guy". That is probably be repeated from someone else... maybe Fritz. But he does express that he misses him, he draws pictures of him and for him. He just drew a bowl of spaghetti (well... bunch of squiggly lines) and said he will bring the book to Heaven with him so he can show Kendall his drawing. We really need to talk to that counselor soon, though I'm pretty sure this is all normal and OK.

Today we managed to get up for church and Sunday School, though reluctantly. Zachary was exhausted. But he had fun at school. He also had fun playing with the other kids afterwards. I almost didn't get out of there! It was good getting back there. I finally met Cindy, the sweet woman who is organizing the fundraiser for our family. It was a little hard to see the photos and posters there, but they are very beautiful. We also met her son Sean, but he was a bit shy. Maybe next time he will play with Zachary for a bit. Thank you Cindy for all your enthusiasm and support. My church has really pulled together and made my family feel very loved and welcome. Neil is even touched. He actually said he would come next week to services (we'll see!).

We mowed the lawn then went to brunch after church. Then
I spent the rest of the day doing some shopping while Neil took Zachary home and let him sleep a bit. I spent some time down at the cemetery by myself this afternoon. It was a beautiful day and a good day to go. There were some flowers on Kendall's grave and a little cross... probably from my mom. I'll pick them up sometime next week before they throw them out. I put some fresh flowers of my own there too. Mostly I just sat there and tried to absorb it all... but failed. I still can't believe my little baby is gone. He was just such a good little boy and so much fun. There were so many things we hoped to do. It is just so unfair. If it wasn't for Zachary I don't know what I would do.

Anyway, while I was out Neil got a call from the nursing home. They took his Aunt Gladys to the hospital. She isn't expected to make it either. She has been in the nursing home for almost 5 years now. We hadn't been able to visit her much in these last few months and I'm sorry for that. It isn't that close to our house. I had been planning on taking Zachary this week after the Morgan Center. More proof you should not put things off. Anyway, I'll go tomorrow and see if she is any better. They think her kidneys are failing so they are going to try some dialysis. Please pray that at least she is kept comfortable and not suffering. She is 84 years old and has suffered enough in her life.

Keep Penelope and Carter in your prayers. I am sorry for the lack of links... I just am too tired for it. I'll do them another time.

I do have a link to our firstgiving site which will collect donations for the Alex's Lemonade Stand in honor of Kendall. We will be holding the stand on May 12th, during the family fair for Kendall. The proceeds from that will go to Alex's Lemonade Stand (www.alexslemonade.org). Kendall had been very moved by Alex's story and always wanted to do a stand. I do really wish I had done one while he was alive, but I feel motivated to do one for him now. I know Zachary will really enjoy it and it will help him I think. He understands the money goes to help other children with cancer. Anyway, Kendall's website is: http://www.firstgiving.com/kendalljackson . Those who cannot make it to the stand can donate there if they want. I know I have been asking for a lot of donations lately. Please understand that there are just so many organizations that have done a lot for us and supported us. I don't expect everyone to give to each drive we do. We are always happy for your love, and prayers. Money is not required for our friendship. However, I will be asking for blood again soon. The blood drive at our church is coming up! (Did I forget the bone marrow drive in Lindenhurst High School? - May 18th.... it's just a cheek swab.. no needles!)

Much love to all. I feel better already.

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Quick Kendall memory: During his initial treatment at Stonybrook I made it a goal to get Kendall outside every day while we were in-patient. It wasn't always possible, but when it was I would get the doctors to write for brief trips off the floor and schedule these excursions around his meds with the nurses. We take the "tunnel" to the university tower building elevators (less crowded) and take them to one of the many patios or decks. (I tried to pick ones were there weren't any smokers). We would feed the pigeons. Kendall was fascinated, and a little scared of birds, but he loved to feed them. He would scream with delight as they fluttered around. We would feed them "Rooster food" - (Kelloggs Corn Flakes - there's a big rooster on the package), or crackers, or left over bread from his tray. These little trips never failed to put a smile on his face and I think they did a lot to keep his spirits up and help him feel better. One time there was a big Seagull, and Kendall was fascinated watching it pick through some garbage. He always loved to watch the "Sea Eagles" fly.

Thursday, April 26, 2007 9:04 PM CDT

I am sad to report that the adorable Ryan McCormick - www.caringbridge.com/visit/ryanmccormick - passed away this morning. He did make it home and had both of his parents with him in the end. But this poor little angel was only about 19months old and he suffered greatly in his short life. Please keep his family in your prayers.

Zachary and I had a pretty good day on Wednesday. We went to the Morgan Center, then do so some shopping and other errands. Then Zachary wanted to go to the park to play tag. I told him I couldn't play because my knee is still giving me problems and I am afraid to run. So he said we could play hide and seek instead. I knew there wouldn't be any other children, as the weather was staring to get bad. But I took him anyway because he had been so good in the stores. I should have taken him to a different park. One we never went to before. But I took him to "Miss Helene's Park". This one is near where we used to go to Miss Helene's house for Mommy and Me classes. I liked to take the boys there because it is a nice park with well maintained playground equipment, fully enclosed (easy to keep two active twins corralled), and it has a good running area too. Also, the kids at this park are usually very nice and their parents actually supervise them. Yesterday there was no one there of course. This was a good thing because I completely lost it. I was so unprepared for the enormous wave a grief that hit me at the instant I saw it. I could just see the boys running the length of that field together. I could see Kendall on the "train" (see above), when he finally got the hang of the monkey bars. He was always so proud of even the littlest of improvements ("see Mommy... I held on for 20 seconds this time.. last time only 12.. but now I can do 20. Hnmf!"). The dinosaur slide was a favorite too.

We were just at this park a few weeks before going into the hospital for the last time. It was an unseasonably nice day, and Kendall ran and played. Zachary and him organized a small a "team" of kids. Often they would play Ninja Turtles, or Power Rangers, or Star Wars, or SuperHeros.... everyone would pick which character they were and would call themselves that. Then they would run all over the park. This time I they were Ninja Turtles... Kendall was Leonardo. He kept up surprisingly well for a kid with very low blood counts and a large abdominal tumor. But after about a half hour, he came and just sat near me and watched a bit. Then he said he had to go home, so we left. Zachary was a bit upset at first, but when I told him Kendall didn't feel good, he didn't complain, but just quietly walked to the car with us. He even handed Kendall a favorite toy in the car.

But yesterday, it was just me and Zachary, and I am sorry to say that I wasn't much of a playmate for him. Poor Zachary just patted my head and told me I was pretty. This is his method of comforting me. I tried so hard not to cry, but I couldn't help it. Zachary is a good boy though. I did manage to pull myself together fairly quickly, and we did play hide and seek. We did laugh and have fun even. When it started to rain we went home, but we continued to run a bit in our yard until the rain got worse.

Today I managed to get the summer clothes taken out and did some laundry and cleaning. Then we went to visit Zachary's friends Harrison and Ben. He had a great time even though he was a bit afraid of their dogs (in the end he was getting used to them). Thank you Danielle! It is hard for me to get out sometimes, but I am doing it. I am even going out with some other mothers from the Morgan Center tomorrow without Zachary. I am pushing myself a bit, but I feel like I need to keep moving right now and doing "normal" things.

Please keep Penelope, Carter and Emily in your prayers I don't know why the links don't work, but you can get their websites in my journal history). Penelope had a very rough and frightening week... but this little warrior princess is still fighting and making her parents proud.

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I have Kendall memory from my mom to share with you:

I have lots, but one thing that Kendall did was to hide my doilies under my lamps. In the beginning, I thought I was going insane. I know I had several green lace doilies on my various tables. I thought Fritz threw them out because he didn't like them. ( I bought them in the dollar store ) My lamps have openings in the bases and he would use his finger and scrunch them underneath. When I finally decided to dust the entire night table and move the lamp, voila... magic, there they were. I chased him all over the house while he laughed hysterical.

She also reminded me of when we went to Disney. Kendall loved the roller coasters and my mom is scared of them. We took her on one of the smaller ones (no hills really... just a very fast track). She screamed the whole time and the boys thought she was insane. They tortured her for days after that. Kendall loved those rides and was fearless on things that dropped, fell, and spun. But the stupid "Lilo and Stitch Experience".... had him crying pitifully.. and we had to leave the "It's a Bug's World" 3D movie because he was so terrified. Three-D and loud sudden noises were very scary for him. We learned to avoid them after that. He did love the Buzz LightYear ride though. We went on that A LOT!

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On Saturday in Nashville, TN there will be the Country Music Marathon and Half Marathon to raise money for Emily's Power for a Cure. This organization was started by Wendy Ransom, who lost her adorable daughter Emily last February to this brutal disease. They runners have raised over $70,000 for NB research. Wendy is running the full marathon in Kendall's honor. She paired the runners each with a child who has or died from this disease to inspire them... she picked Kendall for herself. I am quite honored by this. You can visit her website at: www.emilyspowerforacure.com. They only just did this one, so some of the features are not in place yet. But you can leave a guestbook message on Emily's site at www.caringbridge.org/visit/emilyransom. Send her some love and support for her efforts.

Tuesday, April 24, 2007 9:23 AM CDT

As I said, we had a busy few days last weekend. Zachary was still nursing a cold so we did not get to go to school all week. On Tuesday, we went to the Coney Island Aquarium with his Aunt Kathleen. There are a couple of photos in the slide show above. Then on Saturday I too his friend Jessica to Holtsville Park. They had a great time running around and looking at the animals (there is a small zoo there) and then riding on their scooters and playing in the playground. The weather was fantastic. It was just a beautiful day. I was so happy to have a friend with him. Zachary just loves Jessica and said afterwards she should come and live with us and be his new sister. I said they fight too much... he said..."Brother's and Sisters fight... thats what they do!". Too cute. Really they play nice together most of the time, but two strong-willed kids are going to have their spats.

On Sunday, we took a train to the Central Park Zoo for Earth Day. They didn't actually have a whole lot of Earth Day stuff going on at the Zoo, but there were a few stands. Zachary and Jessica loved the Children's Zoo and the park itself. They climbed on everything. Zachary kept pouring water over his head to cool off like he's seen his dad do (Thanks Neil!). Luckily, I thought to bring a change of shirt. The last photos on the slide show are from the zoo.

So there you have it a lot of fun. But I still missed Kendall so very badly. I remembered him climbing the spider web at Smith Park (see top photo above) and later at the Bronx Zoo with Zach. He just loved to climb and felt such a sense of accomplishment when he got to the top. His whole chest would puff out like turkey and he would grin ear to ear. Kendall always liked to be able to do what the other kids were doing, and he never gave up for long. As I said, I am trying to keep written memories of Kendall so that as I get old and my mind starts to go (like in the next week or so), I will have those memories to recall. One of the parents suggested that I enlist others who knew him to share their stories as well, because some of them I may not know, and others may be from a different perspective. So go ahead and email me your favorite Kendall memories. I'll post some of them over time.

Yesterday we went to the Morgan Center for the first time in close to a month. I actually hadn't been there in several months. It was bittersweet as my friend Angela would say. It was good to see the other mothers again and to make plans with them and try to do normal things. But Kendall's presence was just huge there. I almost didn't make it to the building. Just seeing that hill that he used to roll down after class was almost enough to drop me to my knees. I think Zachary felt it as well. As we got out of the car and started walking, he looked at the hill, and then he took my hand and walked slowly past it holding hands. He didn't say a word, but I know he was remembering too. He was happy to be back with his friends though, and it was a good day. They had a party for one of the children's birthdays, and they also had a birthday visit from Rod and Nancy's children - Trevor and Morgan. It was Trevor's birthday too and he decided to entertain the kids by playing his new guitar. He did a great job and it was great to have him there.

So Zachary made it through with the help of a few cupcakes and some pizza. After class I went to meet a friend for lunch and to talk about work (I'll think about that next month) and Zachary went with mom and Fritz and baby Nicholas. His friend Andrew and his mom Melissa, along with her very active toddler Logan joined them and we met back at my mom's. The kids had a ball running around and playing in her basement.

So Zachary has been very busy. Neil has been working on the outside of the house and today I need to do some work inside. Thank you to all who continue to care for and support us. It means the world to me. I am setting up a virtual Lemonade Stand for those who cannot make it to the real one. I will get the weblinks up this week.

Please keep Penelope - www.caringbridge.com/ny/penelope and Ryan - www.caringbridge.com/visit/ryanmccormick in your prayers. Penelope is going through a lot of pain right now and they are struggling to control it. Ryan just wants to get home, and hopefully will be airlifted sometime today or tomorrow. He is just a little baby and has had such a horrible time. Also don't forget our fellow warrior Carter and his family - www.carterfinger.com . We spent some time together in CHOP and he is just a terrific kid. Also, another twin NB warrior, Emily, is facing her second relapse - http://www.caringbridge.org/fl/emilyadamson. Many of you may recall that she relapsed the first time just a few weeks before Kendall. We keep her and her lovely family in our prayers as well.

Monday, April 23, 2007 8:05 AM CDT

Zachary and I actually had a fairly good weekend. The nice weather helped and we were able to do some outdoor things. Zachary's cold seems to be gone now so we will try to go to school today. I will update later with some photos and details about our days.

I'm having some trouble sleeping now so I'm tired a lot. I have to get Zachary registered for Kindergarten, and that is really making me so very sad. I was just looking forward to sending the boys together. I am trying not to think too much about all the thinks Kendall won't be able to do, but it is hard. When a child dies, all your dreams for that child die with him. Every parent wants their children to grow up and go to school, maybe college, have a career they love, fall in love and start a family, and maybe have children of their own. Kendall often talked about how much he wanted to be a daddy and all the fun things he would do. He would ask if he could be a doctor, or a fireman, an actor (this was a dream after watching one of the "making of" star wars movies... he wanted to be like the little boy who played Aniken in Episode I). I always told him yes he could do anything..... but I have known for more than a year that it wouldn't be very likely. It just broke my heart every day.

Little Kendall reminders still pop up every day. I was downstairs throwing in a load of laundry the other day after a pretty nice day with Zachary. I was actually feeling pretty good at the time. I came across a pair of Kendall's jeans that Fritz had put some darts in because they were too big in the waist and decided to throw them out because it would be unlikely that they would fit someone else. As usual, I checked the pockets first. In one I found a Chuckie Cheese token and in the other.... I found "Gary"....a plastic prehistoric lobster of some sort. I just broke down completely. Kendall was always putting little things in his pockets... rocks, small toys, coins. I remembered how much he loved Chuckie Cheese's. He only got to go there a couple of times... because it was always a big risk to take him someplace like that. But when his counts were really good.... I took the chance and let him have fun. he really just loved it so much. And "Gary" was one of those little things he carried around for weeks. I have no idea how certain little animals or toys would become so important to him... but he always wanted something small to hold in his hands. Dinosaurs were popular, so were minature Power Rangers, animals, Star Wars figures, and in the end.... ninja turtles. Every time we left the house he made a big production over what toys he needed. He often put these little things in his pants. Gary is now taking up residence with Leonardo the Ninja turtle. One of these days I will make a displace case for them.

I just miss him so much every day. I dream about him at night, and he is back running and playing. I am starting to have trouble sleeping too. I wake up and I hear him calling me. On the bright side... he is calling out in fun or laughing... not in pain. So at least my subconscious mind feels at peace. I remember little things all the time... like how he used to point with his pinky finger when he was little. I always thought it was odd. Zachary never did this... only Kendall. When he was first learning about the world he would kind of cross his last two fingers and use the pinky one to point and say "Dat Dat?" (What's That). He would say this about every single thing over and over..... he was always so curious. Eventually he would try to say the words too. He ended up with a pretty good vocabulary and excellent language skills. I remember when they first tried the pain pump and he just didn't like the idea because it was still being adjusted..... he would ask for his pain medicine and just didn't trust that it was really coming when he pushed the button. He would say things like "You tell nurse Debbie to go downstairs to the pharmacy and get the pain medicine and put it in the IV tubie!". He seemed to need the visual of the nurse putting the medicine in. We eventually got the pump to work well enough for him until we started the patch. But those first few days were tough. But Kendall had no problem communicating even when he couldn't really talk. He had a host of facial expressions and grunts that served him well. Even when he was on the oxygen in the end and talking was difficult... he got his point across. When asked a question he would respond with either a smile Yes or bunching his eyebrows and a stern look... No.

I have to stop this now. I am getting just too bummed out. I didn't even mean to. I would just ditch this whole update, but I want a record for the future. At some point, I am going to forget some of these little details if I don't write them down. But I never really could forget Kendall.

Later I will tell of the better times Zachary and I had. We really did have some fun this weekend and it was good for us to get away for a bit with some friends.

Friday, April 20, 2007 1:54 PM CDT

Yesterday, and so far today, was a much better day. I am not ready to call it a good day... but better.

Zachary was still coughing and sniffling, though he seemed a lot better (he will hopefully be well enough for school on Monday). He had a lot of trouble sleeping. I think it was the cold medicine. I said it is supposed to make you drowsy... but well, I guess sometimes it has the opposite effect. Last night I didn't give him any and he fell asleep easier (still late... but not as bad as Wednesday night). So we got up late on Thursday and Neil went to get his tooth pulled.... one of the many things we put off these last couple of months. I decided to get Zachary out of the house to let Neil rest. So we went to the little zoo at Holtsville park (some of you may remember the boys had their fourth birthday party there... it is sill a favorite place). We walked around and talked. Zachary enjoyed feeding the goats even though he is a bit scared of them. We went to the playground next door, but there were hardly any kids there. I couldn't run with him because I seem to have injured my knee. I am not sure how, but it keeps going out on me and causing shooting pains. I had a huge wave of sadness seeing Zachary trying to play with the few little kids that were there. They were all too young for him and didn't understand what he wanted them to do. The kids his age are all in school now. But Zachary took it all fairly well. He played a bit with the little 2-3 year olds and was good natured about it. We didn't stay long there.

I took Zachary to K-mart because he needed some new sneakers and I had seen some advertised there that he would like. He picked out some power ranger sneakers and a few other things (presents for a friend). By this time it was time to eat, and of all places he wanted to go to Target to get pizza! I asked if he would like to go to Pizza Hut which was closer and they are the ones that make those little personal pan pies. But he would have none of it. He was just adamant that it HAD to be the Target Pizza. At the end of each sentence he put a little "hmpf!" that was very reminiscient of Kendall. When Kendall was serious about something he had this little determined "hmpf" that he would use. Like "No way, I am NOT going to walk. Hmpf!" or "I will only eat the Teddy Grahams. Hmpf!" Anyway, I didn't have it in me to say no after that.... so we went to Target for dinner. We at the "pizza" (I'm sorry.. I really don't consider Pizza Hut pizza) and went across to Stop and Shop for a few supplies we needed at home. Zachary was just being such a good boy. Very helpful and sweet. He has been lately. When he does something "wrong" and we ask him to stop, he says he is sorry. He tells me daily how pretty I am (he says this to try to make me smile) and gives a lot of hugs and affection. He is being really super good.

When we got back he played some video games with Neil and I started cleaning out my front closet. We have a lot of stuff that is just cluttering up our house. We need to get rid of some of it to make room for the more important things. So I cleared some space there and re-organized it. Then I started on the toy bins. I got rid of a lot of broken toys and a lot of those little dollar-store toys and Happy Meal toys.

Today Zachary went to go swimming at Nonni's and I did some banking and cleaning. Neil and I are going to tackle the lawn now. It has greatly suffered from neglect... especially in the front.


I want to remind everyone of the bone marrow drive on May 18th in honor of one of the Morgan Center children, Jackie. It is being organized by her sister and I think it is at the Lindenhurst High School. The fees will be waved for testing. It doesn't hurt to be tested... only a cheek swab. I will be there and hope everyone will consider doing this as well. The need for marrow donors is great. When people cannot find matches within their families, they have no other options but to look to strangers. You can find more information at www.marrow.org. I will get more information out as it gets closer to the date.

Also, we will be at the Fundrasier at Hope Lutheran Church on May 12th from 1-4, and I am going to be hosting an Alex's Lemonade Stand in Kendall's memory. The money from that stand will go to Alex's organization which benefits all children with cancer. I realize it may be a bit odd to hold a fundraiser within a fundraiser, but this is something that Kendall really wanted to do. Our first stand will be difficult for me and I figured it would be better to hold it where I will be surrounded by a lot of friends and family and a supportive community. I will host other lemonade stands sometime in June. I have a banner and signs being made for this. I will have a website up shortly where people can donate if they are not able to make it to the stand.

I also plan on doing a walk for Sunrise Day Camp on June 3rd. This is another one of the many organizations that have help us so much over the years. I feel a strong need to do something right now.


So that is it for now. I am keeping busy because that is what helps me a lot. Do not worry, I take plenty of down time in between. I am hoping to do a bit of traveling soon too. Sooner or later I will have to go back to work, but for now I just want to spend some time with Zachary and do some of the things I always wanted.

Oh, I haven't exactly planned Zachary's birthday yet for those who were asking. I will work on that this weekend. We may just do something low-keyed this year.

Wednesday, April 18, 2007 10:37 PM CDT

Today was a tough day. First of all, it has been exactly one week since my sweet little boy gained his wings. I don't know why it would matter.... a week, a month, a year, ten years and six days.... I will miss him forever. But somehow these arbitrary milestones we set up for ourselves can seem just so large. Anyway, the one week mark is probably part of it. But then it was also the first day where we really didn't "DO" anything. I was planning on going to the Morgan Center... but Zachary picked up a cold with a fever. I had a bad sinus headache and scratchy throat this morning and thought I may be catching it also. However, I felt better later in the day so it was probably just some allergies kicking up from all the cleaning and dusting.

Today I cleaned out my car... though it still needs to go through the wash. This was really tough, because I decided it was a good time to take out the extra car seat. Without it, I was able to easily convert Zachary's seat to a seatbelt booster (as opposed to the harness). With the second seat, I would have had to switch the rows in my van... which would have been a pain. I have put this off for a while. No need to now.

Today I also emptied my suitcase. This was the first time I had completely emptied it in over a year. I kept finding all sorts of things.... coffee bags, small toys, paper scraps with little notes, Kendall's toothbrush, Opsites and Tegaderms, stickers, tape..... all sorts of things that I had collected over the years. Don't need it any more.

Then there was the call from the insurance company. The case manager called to inform me that we were getting close to the cap on Kendall's treatment. I had no idea there was a cap. Probably should have looked into that years ago. She wanted to go over some plans/options. I told her he passed away and she apologized of course... but I couldn't help but think she was thinking "Oh great, now we won't need to apply for that cap extension!". Of course she was very nice and probably horrified that her department hadn't yet been notified. But that didn't do much for my mood either.

Then there was the call from the cemetery. Neil was going to put this visit off, but we decided that we may as well do it now rather than ruin a potentially good day. We had to start the process of selecting the plate for the marker, and to put a down payment on the site next to Kendall's for Neil and myself. It is really amazing at how much they charge to bury someone. Just incredible. These cemetery salesmen and funeral directors prey upon the bereaved. Truth is, they didn't even have to try to sell to us. Where else would we want to be buried but next to our baby. Luckily they have a convenient payment plan.

Lastly, today wouldn't have been a good day even if Kendall was still here. It was my father's birthday. He passed away in June of 2003, the year before Kendall was diagnosed. I still miss him, but the birthdays and holidays are especially hard. I still can't pass a golf course or bowling alley without thinking about him.... and wishing I had golfed and bowled more. I think it was my dad who made me so determined to make sure that Kendall got to have a lot of fun and good memories... no matter what.

I just had a too much time to think today. Zachary is missing having a playmate. It is hard to see him doing things alone that he would normally have enjoyed with Kendall. I know it is just something I have to get used to. I think Zachary is doing the best of all of us. But he does miss his brother terribly.


Enough of this wallowing for now though. Yesterday Zachary and I had a great time with my sister Kathleen who decided to take an extra day off work. Zachary loves her and had fun playing with her little dog Winston.... except that Zachary is afraid of dogs. Still, he loved throwing toys for him and watching him run. He wasn't feeling that great... but he still was looking forward to going. We went to the Aquarium for a bit. We were going to go to the Museum of Natural History in the city, but he just didn't want to go for some reason. The Aquarium is a shorter trip. We got to watch them feed the otters and sharks, and the walrus' are really cool. I will post the photos tomorrow or Friday.

Please keep Penelope in your prayers (www.caringbridge.com/ny/penelope). That brave little warrior is breaking hearts all over with her inner strength and beauty. She is just not giving up, even though she is suffering greatly. Also, keep the prayers going for Little Ryan (www.caringbridge.com/visit/ryanmccormick). They seem to be working and the radiation seems to be helping him. He is supposed to go home soon. Also, renewed prayers are in order for our friend Carter (www.carterfinger.com). He is also getting to the end of treatment options and moving to palliative care. My heart goes out to him and his sweet family. They are just all such nice people.

Many have asked how I can keep posting and trying to be supportive of others even at a time of grief. First of all, a lot of it is habit. My email list and this site have been my main source of therapy that kept me sane over the years. It is an outlet and helps me to process things better. Secondly, it is only in reaching out that we can lift ourselves up. I find the connection I have with other parents to be therapeudic. Sometimes, they are the only ones who can understand. It is like the penguins huddling against the wind.... switching around so that no one's back stays out in the cold too long. They also send me support and prayers. I am always amazed at how small the internet makes our world. I got a message the other day from the mother of the first roommate Kendall and I had at Stonybrook. We would occasionally run into her and her son, but I hadn't seen them in a long time. She found out about Kendall because she follows Christi Thomas' website. She lives a few miles from me, but was notified of Kendall's death through Tiffin, Ohio. It is really amazing.

Anyway, I feel a lot better now. As I said, writing helps me. It is very soothing. Good night to all.

Monday, April 16, 2007 7:31 PM CDT

As promised, here is the beautiful reading Nancy Zuch, founder of the Morgan Center (along with her husband Rod) read at Kendall's wake service:


Kendall

When I was asked to speak today about Kendall, I was truly honored and humbled. I was also concerned that I could not put into words, this wonderful sweet boy who was a pleasure to know, to love and to teach.

How do you put into words…his smile. That smile with a sparkle in his eyes. Kendall always smiled no matter how he felt. A smile that reassured you, that it was OK. A smile that regardless of what was happening in his world made you smile. Not just a smile, that wry crooked smile that said, I know something that you don’t know- smile.

How do you put into words…a happy child with his father’s resolve and his mother’s inner strength, always a hop and a skip, always ready to laugh and looking for the punch line. And once laughing, leading his brother Zachary to follow close behind.

How do you put into words…Kendall’s desire to have fun. It was the ultimate goal. With the class songs, he was having so much fun that he had an extra beat. And you should have seen him do the chicken dance, he would take it to a whole different level.

How do you put into words…Kendall’s leadership and the things he and Zachary created together, like rolling down the hill after class with their classmates, outside The Morgan Center. On sunny days, this is how they ended every class with laughter and smiles. Kendall also had a lot to add to Show & Tell. He loved to share his toys, as well as souvenirs he got from his outings with Mommy, Daddy, Nonni and Poppy. Kendall and Zachary once had nothing for Show & Tell, so they sat in the front of the room and said, “Ask us where we’ve been”. Kendall also loved to ask questions of the other children which always included, “Where do you keep it?” & “Do you sleep with it?”. This was very cute, especially when Ashley brought her teenage sister for Show & Tell.

How do you put into words…A boy who adored his family. Sometimes Kendall would not be in the mood for arts and crafts. Then he would learn that it was for Mommy, or Daddy. He would then put all his effort into his project to make it just right. Kendall of course adored his brother, and even though Zachary was protective of Kendall, Kendall was always trying to protect Zachary.

How do you put into words… Watching a child go through his passions from Thomas the Tank, to Rescue Heroes, Power Rangers, Hot Wheels, Ninja Turtles, Webkins and eventually becoming the resident expert of Star Wars. Trust me, you could ask him anything.

How do you put into words …. the heaviness I now feel in my heart for a little boy who means so much to anyone who he has touched. But I assure you this beautiful little boy Kendall and his wonderful family will always be in my heart, and will always be a part of The Morgan Center.

Lastly, how do you put into words… what Kendall has taught us. To laugh when its painful, to smile even though you may not feel like smiling, to lead when it would be easier to follow, to protect those who are protecting you, and to love because love follows you everywhere.

Love,
Miss Nancy (& Mr. Rod)


*******************************

I want to also share the flier for the Day of Hope for Kendall, a fund raiser organized by Cindy Merkler, another mother from my church. She called me earlier today to tell me they still intend to go ahead with the fund raiser, and to make it a celebration of a beautiful life. I was very touched by how much my church has done for me in these past few weeks. Besides the fundraiser, they also coordinated and helped (along with some good friends of ours) to provide the luncheon back at the church's hall for those who attended the funeral service. This was an enormous relief, as we simply didn't have the facilities or the time to do this, and catering would have been very difficult for us. I will not forget the generosity that has been shown to me and my family. It truly made me feel like I belong there. Anyway, here is the flier. All are welcome to attend. I will be there with my family, and will hopefully host a separate lemonade stand in Kendall's honor. Kendall and Zachary were looking forward to doing one last summer, but I just had a lot of trouble getting organized and started. There was so much going on. I want to do this for him now.

If anyone is good at sign making and wants to help me make a banner or sign... just let me know.


Raising Hope: A Family Fair for Kendall

On Saturday, May 12th from 1-4

Hope Lutheran Church
46 Dare Road, Selden
(off Middle Country Road by Walgreens)
www.hopeluth.com

Kendall was diagnosed with Stage IV Neuroblastoma, a very aggressive childhood cancer, just after his second birthday.

Come for fun – vendors, raffles, bounce house, face painting, crafts, balloons, and more. Admission $5 – under 12 free.
(Face painting and bounce house additional $1)

Sunday, April 15, 2007 10:30 AM CDT

I wanted to share a quick story with you, and then I will post the beautiful eulogy that Kendall's teacher from the Morgan Center said for him at the wake service. The wake and funeral services were just beautiful, and we had a lot of people whom I never would have expected to come. One of them was Mara, a mother I met at CHOP whose beautiful daughter Laura passed away a few months ago - www.caringbridge.com/visit/laurastiles. (Sorry for the lack of links, but they seem to be blocked by caringbridge.) She took some photos of the funeral for us. I am grateful. It is difficult to ask that people take photos of something so sad, and I may never want to look at them after this week, but for some reason I am very happy to have them. It isn't like you ever forget the day you bury your child, but the details seem blurred and you don't see a lot of what is going on around you. I'm still just going through the motions right now, but at some point I'm going to have to seriously deal with this great loss. I'm already having little twinges of what our future will be like..... I keep talking about "our children" and "my boys" like they are both here. I just can't see them in the singular right now. But for now, I will just keep doing what has to be done, and trying to keep Zachary busy and distracted as best I can. We are supposed to meet with a bereavement counselor at the Morgan Center on Wednesday. They lost three beautiful children in a few weeks, and Nancy was thoughtful enough to invite her to speak with the parents and children.

OK, so for the story: Those who have been reading the website may have remembered that not long before his death Kendall asked me to find Leonardo, one of his Teenage Mutant Ninja Turtles. This particular one is very small, about the size of my thumb. My mom had given him the four little turtles a few weeks ago. By this point his room was full of toys, especially little plastic things that he loved to hold and carry with him. It took a while of digging through the various buckets and boxes, but I eventually found the right one. He never let it go from that point until he died (with the exception of the time he was sedated for radiation. It was in his hand or near him from that point on. I took it afterwards, and originally planned on putting it in the coffin with him, along with his cuddle frog and a few other things. The cuddle frog who was there in the beginning, was there at the end as well. I don't even remember who gave those particular stuffed animals. I wish I did. They were given as pair, a Ty frog and bear. I eventually bought a second frog for Kendall, because he just loved his so much I was afraid he would be upset when we had to wash him. I have no idea which is the original and which is the second, but one was more worn than the other. That was the one I kept. The other is with him along with some of his other favorite things.

Oh... sorry I got distracted again. About the turtle. I put the little turtle in my purse, and I came across it when we were making the funeral arrangements. I was just kind of holding it and I put it in my jacket pocket. Later that night I went to a store to see if I could find a new skirt. I couldn't find my black skirt and didn't really feel like looking for it (probably in one of the many storage bags downstairs.... I rarely wear skirts/dresses). The store was getting ready to close, but I tried on a few things and bought a new blouse...though I didn't find a skirt I liked. I figured I'd try a different store in the morning. When I got to the car, I reached in the my pocket for the turtle again...and it was GONE! I ran back to the store, and they let me in for a minute to look for it, but they already had locked the fitting rooms and threw the keys in them. They told me they would have the morning shift look for it and hold it for me. I was so devastated that I lost something that was so important to Kendall. Even thought it is just a silly little piece of plastic, he obviously felt an attachment to it.

My mom's friend works at that store, so I asked her to ask Marie about the turtle. I figured she would be more likely to put a serious effort into finding it. I as afraid that the store clerks would not understand how important a silly little turtle could be. But with all that was going on, mom forgot to call her in the morning. I called and asked mom about it on my way to find another skirt - around noon. She said she would call the store and find out for me. She was talking to the store clerk on the phone who was saying they didn't find any ninja turtle toys in the dressing room but would look around the store. At that exact moment, a customer was at the counter paying for her stuff, and overheard the conversation. She said she had found a little ninja turtle in the parking lot, and put it in her car for her son. The woman explained it was for a mother who lost her child and it was special to her. The customer went and retrieved it and they held it at the store for me. I don't know her name, but I will be forever grateful.

I picked up Leonardo, and I have decided to keep him. I had Neil put him in safe spot, and I will get a little case for him so that I don't lose him again. I honestly feel this is a sign from Kendall that he is OK, and that he wanted me to have the turtle to remember him by. The whole thing brought me a great sense of peace and even happiness. It helped me to get through the wake and funeral (I had it in my purse), because I knew that Kendall was already in Heaven. I also know that a dear little angel named Christi was holding his hand in the end.... I don't want to get into why. It doesn't matter what others believe, only what I know in my heart.


OK... that wasn't short. I am simply not known for brevity. I will post Nancy's tomorrow. I feel like they need to stand on their own.


As far as I know, Cindy from our church is still planning on the fundraiser for our family. It is called a Day of Hope for Kendall Jackson. It sounds like a fun day, and I will consider it to be a celebration of a life well lived. I am not sure what we will do with the funds, but I do plan on registering a Lemonade Stand in his honor. Any money from the stand will go to Alex's Lemonade Stand which funds a lot of pediatric cancer research. It was something that Kendall and Zachary wanted to do together, but we just kept getting side-tracked from organizing it. Alex's mother, Liz Scott, was one of the people who has been so wonderful and sweet to us throughout our time. When I was in CHOP for the MIBG treatment, which required isolation, she came to visit and sent volunteers from her organization to visit with us. I would have been totally alone otherwise as my family wasn't able to come at the time. It was one of her volunteers who gave Kendall Pola... his beloved Webkin. Kendall enjoyed the Webkinz account.... even up to the day he died. Some of the photos on the end of the strip above are of him playing Webkinz games.

There were a lot of wonderful organizations that helped us throughout Kendall's treatment. I had chosen the Morgan Center and A Mother's Kiss to be the main recipients of donations in his honor... but I do plan on giving back and showing support for some of the others as well. I will post more on some of those plans later.

Thank you all for your caring, support and prayers. I have benefited greatly from this journal and its connection to others who made me feel less alone and isolated. It means a lot to me and I will likely keep it up for a while, though I may gradually stop posting at some point. But for now I still have a lot to say and a lot to process.

Peace be with you all.

Saturday, April 14, 2007 3:27 PM CDT

Today we had to do something that every parent dreads -- we had to say goodbye and bury our precious little child. I don't have the energy to write more right now, but I have a lot to tell and will do so over the coming days. I am comforted by the fact that he has gone to heaven for sure and he is now at peace and free of pain and suffering.

******************************

Matthew 18:3

And he said: "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.

Thursday, April 12, 2007 2:54 PM CDT

I added some photos above from Saturday night and Easter Sunday. It is hard to believe he would be gone in less than three days. I still don't really believe it. Neil and I are functioning OK, making plans, going through the motions, crying a little..... but still not really believing it. When I think about it it hurts too much and I just shut it out.

The last thing we will have a chance to offer our beautiful little boy is a descent funeral and burial. Therefore, we are going to be a little rushed, because the Pastor of our church will not be available after Sunday. I really wanted the services to be performed by someone who knew Kendall. It just feels more right this way.

Therefore, the funeral home visitation will be at Marinello Funeral Home on Friday evening from 7-9 pm. There will be a wake service at 8pm. There will be another visitation on Saturday Morning from 10 am to about 11:30 at the funeral home. We will go from there to Hope Lutheran Church for a mass service. The burial will immediately follow at Washington Memorial Park in Coram. Anyone who wishes can join us back at the church for a reception to follow.

For directions or information you call Marinello Funeral Home at 631-732-6969. http://www.marinellofuneralhome.com/. Hope Lutheran Church is on Dare Road in Selden - www.hopeluth.com/.

In Lieu of flowers, donations can be made to:

The Morgan Center (www.themorgancenter.org)
P.O. Box 333
Brightwaters, NY 11718
(631)206-1341

A Mother's Kiss (www.amotherskiss.org)
P.O. BOX 552, MORICHES
NY 11955-0552
631-254-2965

Hope Lutheran Church (www.hopeluth.com)
46 Dare Road
Selden, Long Island, NY 11784
631-732-2511



Many blessings to all of you.


*******************************
11 Even a child is known by his actions,
by whether his conduct is pure and right.
- Proverbs 20:11

Wednesday, April 11, 2007 9:30 p.m. CDT

Kendall passed away quietly at about 8:30pm on Wednesday, April 11, 2007. He was surrounded by his family, mom, dad, grandparents, and both of the boys' Godparents. His brother Zachary was nearby being cared for in the family room. He was surrounded by love. I will miss him forever. I have some great photos from Easter and the night before I'd like to post, but the photo site is down. So check back tomorrow.

I will post the funeral details as soon as I get them. Things happened very quickly and we never had a chance to really prepare.

********************

There is no why.
- Yoda

Wednesday, April 11, 2007 10:23 AM CDT

There is simply no easy way to talk about this. There is no sugar-coating it. So I may as well just be brief and to the point. Kendall's condition has gone downhill steadily to the point where further treatment would be pointless. We have contacted hospice, and may try to see if we can manage things at home, but things are changing so quickly that I do not forsee that happening. The goal right now is to keep him as comfortable as possible. After his radiation this morning he was in a lot of pain, and they have increased the meds again. He has a lot of tolerance, so it is hard to get him to the right point. They are moving to what the pain management nurse refers to as "aggressive pain management". At some point, this will sedate him to the point where is not not aware and responsive. We do not know when that point is, but probably within the next few days. The nurse recommended that I have Neil come soon, and anyone else who feels they need to be here to speak with him while he is awake to do so soon.

We are holding up fine, but it is so very hard and painful. I'm afraid that my plans for a birthday party are done, for now at least. Unless there is some miraculous change. It is unfortunate that things went downhill so quickly. As you can see, just last Friday we were showing improvement. The doctors felt at that point that we would have a bit more time and could plan something for a week or two. But neuroblastoma can be like that. The tumors can grow dramatically in just a couple of days or hours. There is simply no predicting it. I am thankful he got to enjoy a very happy Easter. I think for Kendall, the celebration of the Lord's resurrection is more important anyway. He is not afraid. Kendall knows that when you get sick enough that the doctors cannot make you feel better any more, you can go to Heaven where there is no pain, and only peace and love. He knows his grandparents and Mimi, and some special friends he has met along the way are there for him. He knows he will not be alone and we will all be together forever. He knows even his dog Whiskers will be there with him. He is very calm.

Kendall knows that he has a lot of people who love him. I named all of them over the last few days, and I read to him from his guestbook and tell him all about how lucky he is to be so surrounded by love. He says he expresses his love for everyone too. We have truly been blessed by this very precious child. I will try to keep you updated, but it may not be possible.

Monday, April 9, 2007 10:28 PM CDT

Well, I'm glad we had a pretty good day yesterday, but Kendall was not doing well today. The pain was getting out of control, and his abdomen is very swollen. It is felt that this is from the tumors. We went to radiation therapy, and actually got there on time. But before they even wheeled him into the room he began to vomit. There was a lot of blood (mostly old), probably due to the low platelets and a nosebleed he had overnight. After getting him settled down, it was decided that they would not do the radiation this morning as the anesthesiologist did not feel comfortable sedating him. He was given some Zofran and felt better quickly. We will make sure to premed him before going down. He got some lasix, then the doctors decided to do a chest xray and a repeat echocardiogram. He felt a bit better, and did some painting with me in the afternoon.

The echo went fine and his heart looks good with previous findings relating to infection greatly diminished and almost gone. The chest xray showed some fluid retention. They cannot rule out an infiltrate. His breathing was getting a bit faster and his O2 levels were a little low, so he was put on oxygen. He felt a lot better after all of this, and by 6pm he was playing Lego Starwars with Neil and talking more. He even ate a few bites of cookie and some sips of juice. When he got tired, he stopped playing and before they left he told Neil and Zachary he loved them very much. I cuddled with him a bit and told him about how many people loved him. Then I sang to him a bit and said a prayer with him that Sister Lynn had typed up and posted above his bed. I thought he was asleep and was dozing a bit myself when he suddenly asked me to find Leonardo. He wanted one of the little Ninja Turtles mom had brought him a couple of weeks ago (they are small, like the size of my thumb). We have TONS of little toys here.... dinasours, Ninja Turtles, Starwars toys, Power Rangers, green army men, animals..... you name it. I finally found Leonardo in the third bin.

They are giving him some red cells because they are a bit low, and will give another dose of lasix afterwards. So I better get some sleep now before he has to go again.

I apologize for the broken links. Maybe it is something Caringbridge is doing, or maybe I just made a typo I have yeat to find. I"ll work on it tomorrow. Please keep Penelope and Ryan M. in your prayers, along with Kendall. Oh, there will be a special fundraising event for Kendall at our church on May 12th. I will get the details out as soon as I know more.

Sunday, April 8, 2007 8:53 PM CDT

NOTE: some of the links on my site have not been working. I am trying to fix them as I come across them, but let me know if you notice them because I don't always take the time to check.

************************************

HAPPY EASTER!!!!!

It was actually a happy day all things considered. Kendall is really such a trooper and such a brave little boy. We are so proud of him.

For some reason, yesterday he began to get progressively worse. His pain increased again, and his tummy was swollen. We noticed an increase in blood in the urine as well. Overnight he had a hard time, with pain meds being needed every two-three hours (this is on top of the continuous patch). I had pretty much decided to not take him out to Sunday services. But In the morning, when I told him we could stay inside, he said no. I asked him if he wanted to try to go to church and breakfast with the family, and he was adamant yes. So they gave him a dose of pain meds, and a dose of lasix to help get some of the extra fluids off, and I dressed him in his new outfit (he just loved it and it looked great). We were running late unfortunately while we waited for the pharmacy to send the lasix (the doctors ordered it at the last minute because of the obvious fluid retention). So we didn't get time to sit for the breakfast. I gave Kendall the choice of having breakfast with the family, or going in to hear the service which was just starting. He choose the service. He loved the bell choir, and they played beautifully. His watched them ring the bells and had a very serene look on his face. He became more and more relaxed during the service, and by the time of the Pastor's sermon, he was dosing quietly. But I could tell he wasn't fully asleep.

I really liked message in the sermon and was glad I made it there, even though it was kind of hard. But not long after the sermon was done, during the following hymn for that fact, Kendall sat up and was obviously distressed. I took him out into the hall, and he first said he wanted to go to back to his room for more pain meds. Mom, Fritz, Neil and Zachary (along with some of our friends) followed us out. While we discussed who should go back and who should stay, Kendall told me he needed to go to the potty. He was more comfortable afterwards, but I felt it would be a mistake to try to take him in to finish out the service. He was only mildly uncomfortable at that time, and I wanted to get him back before he was in actual pain. Mom and Fritz dropped Zachary, Kendall and me back at the hospital, and Kendall was quickly given some pain meds and hooked back up to his fluids. He slept for an hour or so very comfortably. When I asked him if he was glad he went, he smiled and shook his head. Then he said he wanted to rest before the egg hunt. The hopsital staff was thrilled to be able to get us out for this.

The egg hunt was a huge success, and both boys had fun. The eggs were hiding in the lobby of the hospital, and the kids ran around and found them. They each got lots of eggs (like 15-20). Kendall did not get out of the stroller, but he was very happy to point to eggs and have me or mom retrieve them. We got some good pictures and even some video, but it will take a little time for me to copy them to disc and upload them. Then we went back to the playroom for a bit. Kendall got tired and I took him back to bed. Brad from Child Life brought the boys' basket to the room. In a waggon. Because it was that big. This monstrosity was a huge wicker hamper filled to the top with toys and games. There were so many books and coloring books and puzzles that the boys didn't even know what to do with them all. They had power rangers and some scooby doo puzzles, and there was a gorgeous leather journal for the parents, along with a leather photo album. There was also a nice blanket which I gave to baby Nicholas as it seemed a better size for him. And a CD walkman along with some read-along stories on CD. There were a lot of other cool things that kept Zachary busy while Kendall slept. Zachary and I eventualy went back to the playroom for some MarioKart. Kendall slept on and off after that. He was very happy, but tired.

It is hard to not be worried. I'm not sure what the significance of the new symptoms is, but I'm pretty sure it isn't good. I'm concerned for the kidneys and liver. I think that my hope of having a party outside the hospital may be unrealistic. I will talk to the doctors tomorrow. I did hear from a doctor in Vermont who may have a treatment that could help (temporarily), but I'm not sure if he will be in good enough condition to recieve it. You have to be able to fit into certain peramaters for clinical trials. We will see. She said she would call me on Wednesday, and I will forward her information to our doctors here (Dr. Prakash already said she would talk to her). There aren't a whole lot of other options out there right now, but we will see what they come up with. I suspect that the radiation is not working for us right now, at least not as well as we would like. I wish I could have more hopeful news.

Kendall still has a lot of spunk and spirit in him. So do our fellow warriors, Penelope and Ryan. These children are so very brave and have such a strong will to live. It is just heartbreaking.

**********************************************

Luke 24:5

5 and as the women were terrified and bowed their faces to the ground, the men said to them, "Why do you seek the living One among the dead?

Saturday, April 7, 2007 10:27 PM CDT

The last two days were probably the best we've had in a while. With his pain under control, Kendall is more willing to play and talk, and move. Things aren't perfect by a longshot. He still has alot of pain, but the medications are keeping it under control.

On Thursday we had a visit with an old friend from the Morgan Center, Harrison, his brother Ben and his mom. Kendall had a great time playing StarWars with Harrison, and Zachary had a lot of fun trying to teach Ben how to play SuperMario Kart. Kendall felt fairly good most of Thursday. The swelling on his lip was greatly decreased, though not gone. It looked a lot better. Neil dropped Zachary off while he went to the doctor, and I did an egg hunt in the room for the boys. Both of them had great fun with that. By Friday the swelling on his lip was gone, and Kendall and I did another egg hunt. Most of the photos on the end of the strip above were from that hunt. Kendall sat up for quite a while in my chair playing on the computer with his Webkinz. He had a great time shooting the crows in Pumpkin Patch Protector.

I have a funny egghunt story. When we went down to radiation Friday morning, the anesthesiology tech gave me a plastic egg after Kendall was asleep. He said he wasn't sure if he could have candy or not. I think he said something else, but I was on my way back from the cafeteria and was anxious to get back in so I could drink my coffee. We have had quite a few staff members give Kendall plastic eggs. If they weren't sure about his eating restrictions, they usually put little toys or stickers or tattoos in them. I figured that was what was in the egg. I guess I wasn't really paying full attention... I hadn't even had my first cup of coffee yet. It never occured to me to look in the egg. I just hid it in the Kendall's bed for him to find when he woke up. When he discovered the egg, I told him the Easter Bunny must have snuck in and hid it in his bed while he was sleeping. Kendall excitedly opens it to find ...... nothing. The egg was empty. I am now assuming that part of what the tech said that I didn't hear was I could put whatever I want in it.... but ummmm.. as I said I hadn't even had coffee. Kendall gave me a look that was so funny and so uniquely Kendall that it is impossible to describe. I made a lame excuse for the errant Easter Bunny, that this was just a practice egg, the real ones would be for Sunday (what do you want from me... it was the best I could think of on short notice!). Kendall handed me the egg solomly and said maybe we could do an egg hunt later, then he took a little nap. When he woke up, I set up another egg hunt. I filled the dinosaur eggs Zachary had brought last week from the Dinosaur Walk museum with tootsie rolls, kisses, teddy grahams, and jelly beans, and some little toys too. I hid them around the room (Kendall kept the blanket over his eyes for this. Kendall found all the eggs I hid, then I asked him if he wanted to sit on my chair and open them. He did, and as he was climbing on the chair, he looked behind it, and found.... another egg. One I had forgotten about. It must have rolled off the table where I had left it. You guessed it.... the empty egg! Yes, it was STILL empty. The look he gave me was absolutely incredulous.... like he thought I had lost my mind. I had to think fast, so I told him the prize for that egg was too big to fit in. So he had to just exchange it for the real prize. You could tell he really wasn't buying this, but he slowly handed me the empty egg, and I went in the cabinet and grabbed the first thing I saw... a bag of Fritos. He looked at the bag and didn't say a word. I asked if he liked Fritos, and he nodded, then asked if he could play with his Webkin now. Later, he asked me if I would hide one more egg before he took a nap....... "But it can NOT be empty. You have to put a toy or some candy in it. We do NOT HIDE EMPTY EGGS!". I put a few of his toy magnets in it and he walked back around the other side of the room to find it. Then he played with that for a while in bed before taking a nap.

Kendall was really tired after all this activity. A dose of benedryl and he completely passed out for several hours. I took the oportunity to leave him with my mom and Fritz so Neil and I could get some dinner and take my camera to CVS to print the photos and save them to a disc. He woke up feeling pretty good, and played Lego Star Wars for a bit, and even ate some rice .... and Teddy Grahams.

On Saturday we had another egg hunt in the morning in preparation for tomorrow's big hunt in the playroom. He is very excited about this. He had a bit more pain, and they upped his dilauded dose a bit. We will probably increase the patch again if this does not seem to work. But with the better dose he was very content and talkative. He played StarWars with Neil for a couple of hours, while I went out with Mom and Zachary to get some Easter outfits for the boys (Thank you Fritz!). We met some friends at the mall too, and Zachary had a good run about. We didn't get really fancy clothes for them, because he would be just too uncomfortable. But I found nice soft pants and nice polo shirts for the boys. Also new jackets. I'm sorry I forgot shoes... again. Their sneakers will have to suffice for now.

The doctors have decided to let Kendall out on a pass tomorrow morning so that he could celebrate Easter at our church with their traditional Easter breakfast followed by services. I don't know if he will be able to make it throught the whole thing, but we are only about a 20 minute drive from the hospital. If he needs to go back early, one of us can take him. We are very excited about this of course. When we get back, we will be getting ready for the Easter Egg hunt in the playroom. Kendall saw his new outfit and was very excited and he can't wait to put it on. He drifted off to sleep with a little smile on his face and just looks very content. Speaking of smiling, I have some photos of a real Kendall smile with Neil and Zachary that I managed to snap last night. I'll try to get them put to disk and uploaded tomorrow or Monday.

********************************
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. -- John 14:27


What lies behind us
And what lies before us
Are tiny matters compared
To what lies within Us
- Ralph Waldo Emerson

Wednesday, April 4, 2007 11:30PM CDT

We got some very sad news today about another beautiful little child from The Morgan Center. Sophia passed away this afternoon from her cancer. It is difficult to explain how hard it is to get to know these bright and wonderful children and their families, then to hear the total devastation that you know you will likely face soon as well. Please keep her family in your prayers.

Kendall's lip swelled up this morning like a balloon. He has blood blisters was oozing blood on and off(would help if he could stop picking at them!). They feel this is a reaction to one of the meds, and increased is decadron (an steriod with anti-inflammatory properties that is also helpful in allergic responses). He is also on benedryl.
We were surpised that even after the 50mg fentanyl patch he still needed quite a bit of propofol (anesthetic) to keep him still for the radiation. He did have some pain afterwards and it took quite a bit of dilaudid to get it under control. This is very upsetting, but they did manage to get a handle on it and made some further dosing changes. After that, he requested a lunch tray and mostly ate the cookies (yes... Teddy Grahams) and italian ice. He did eat a few bites of the mac and cheese too though. Later, I set up a bed easel and had him do some painting. We also made made some "Rorschach's" blots by squirting paint onto half a sheet of paper and folding it.I did some with Zachary when he came too. Both boys had fun naming what the saw on the colorful blots.

The Easter bunny came and Kendall woke right up. He said "Hi" and waved his hand as the bunny walked in. Then when he laied a huge basket on his bed... Kendall smiled (with his eyes anyway) and said "Thank you" without any prompting. The basket had a lot of cute toys, and clearly made his day. Later, Kendall played Lego Star Wars with Neil and Zachary, and seemed to brighten up as the night went on.

Please keep Penelope and her family in your prayers. Things are getting worse for her and her family is just trying to keep her comfortable and make her feel loved. Also, little Ryan McCormick keeps having setbacks that delay his treatment. Please keep him and his family in your prayers as well.

************************************

1 Corinthians 15:51
51 Listen, I tell you a mystery: We will not all sleep, but we will all be changed—

Tuesday, April 3, 2007 11:19 PM CDT

We had a rough morning with the pain again. The dilaudid just doesn't seem to work for him (it never really did... that was why he was put on the fentanyl PCA then patch instead). As the Fentanyl patch began to run out, the pain got worse, but the additional doses of dilauded were not even making him sleepy! They finally changed the patch and the increased the patch's dose. He is now on a 50mg patch, but it took about 6 hours before the new dose kicked in and that was a bad 6 hours. But once it started to work, we started to get a much more relaxed and happy Kendall. He was playing video games and talking more normally. We will watch him closely for signs that he is getting too much, in which case they can decrease the dose somewhat.

Kendall started chewing his lip for some reason, and has really made a mess of it. We are back on the magic mouthwash again. His counts have dropped due to the radiation. But he is still just above the neutropenic range. He ate pretty well today, including a couple of chicken strips, ice cups, a push-up pop, some jelly beans, and of course, Teddy Grahams.

Zachary came today and at one point I took a walk with him. He wanted to go outside and look for a wishing star. He explained that not all stars are wishing stars, only the ones with the big rays on them (this is similar to the sun, and the sun is a star, but that is different because it comes out in the day and the wishing stars only come out at night). Anyway, after a rousing game of tag in the tower, we went outside and Zachary amazingly found a wishing star, even though it was very overcast and I could not see any stars myself. Zachary wished that Mommy and Daddy would not have to work anymore, and that Kendall would not have to be sick and have cancer. I seconded that wish, and told him that he got half his wish already... I am not going to work anymore... at least for now (OK.... techically it is a third of a wish).

I let them know I was resigning today, and will send an official letter as soon as they tell me who to address it to. I have worked less than two days in the last six weeks, and have been at no-time status for most of that. I have no intention of working again while Kendall is in the hospital, and realistically not for a while afterwards. If things change and I want to go back within the next year, they will likely take me back. Really, I have always felt my first job was to be a mother to my children.... everything else is moonlighting for extra spending money and benefits. We will manage on a bit less, and have been blessed to have a few very generous organizations that helped out with some of our bills.

Anyway, Zachary was thrilled and excited to find that the wishing star had worked.... at least partially. We went back through the tunnel and the looked out the glass and managed to find yet another wishing star, and he again wished Daddy could not have to work. I told him that would not be good because then we wouldn't have any money. I don't think he really understood that part. Zachary has been showing some signs of the strain... though I think he is coping very well overall. But he makes quite a few comments here and there that let me know he is very concerned about Kendall. For example, he said several times today that the only thing he really cares about is Kendall, and that he wanted us to come home soon. He is exceptionally nice to Kendall, making him things, bringing toys, and being very tolerant of his attitude when playing games and such. Tomorrow I will talk to the hospital psychologist Darla (she stops by daily, though today I didn't get a chance to talk to her). I'm will ask her about getting some therapy for Zachary to help him through this.

Kendall had his repeat echocardiogram today, but I don't have any results. He still has no fevers, and as far as I know only that one culture grew positive. It was a staph infection, and they have swiched him back to the vanco and gent. Hopefully we nipped it in the bud and he will get to keep the subclavian line a little longer. If we get a few more negative cultures and the cardiogram clears, we will be able to have a PICC line placed.

Anyway, Kendall is sleeping comfortably and I will be in a few minutes as well. I am hopeful that tomorrow will be a better day.

Monday, April 2, 2007 8:44 PM CDT

Kendall was struggling with the pain again today, so more changes were made in the pain protocol. I really think getting the increased fentanyl patch will make it better, but we have to wait for this special order item. If things are not under control sufficiently tomorrow and if the patch has not arrived, I will pick a prescription for them up from the local pharmacy. In the meantime, the new dosing system seems to be working. A good deal of his pain seems related to some constiptation, as it seems relieved when he has a bowel movement, even a small one. We have given up on the miralax (which I just cannot get into him in sufficient doses), and switched to ducolax which is just a small pill. This should improve the situation by tomorrow or the next day.

Kendall was happy to see Miss Nancy, Rod, Trevor and Morgan (the founders of the Morgan Center), but he was very tired as they had just given him his benedryl and pain meds. Still, we are glad they visited, and Zachary and Trevor had great fun playing Mario Cart. I got some nice pictures which I hope to upload later this week. I'm so happy to have finally gotten some photos of me and Kendall!

Unfortunately, Kendall seems to have developed another line infection! This is frustrating. This one would seem to be a staph infection, so we will be changing antibiotics again. On the bright side, he isn't getting fevers from it (other than some very low grade ones). He isn't toxic, but this infection could be contributing to his overall yucky feeling for sure. Hopefully with the change in antibiotics we will see quick improvement. He is eating a lot more (though not a lot), and they are going to cut the TPN down to 16 hours and see how that works.

Our friends, Penelope, Ryan, and Sophia still need your prayers. I read this on another website, and just loved it. It really shows just how wonderful the minds of children are (I don't know for sure if these are real or if someone made them up, but some of them really do seem like they would come from a young child):


Proverbs from the Young

A first-grade teacher with twenty-five students in her class gave each child the first half of a well-known proverb, asking them to come up with the second half. Their insights may surprise you. While reading, keep in mind that these are six and seven year olds.


--------------------------------------------------------------------------------

Don't change horses …
…until they stop running.

Strike while the…
…bug is close.

It's always darkest before…
…Daylight Saving Time.

Never underestimate the power of…
...termites.

You can lead a horse to water but…
…how?

Don't bite the hand that…
...looks dirty.

No news…
…impossible.

A miss is as good as a…
…Mr.

You can't teach an old dog new…
…math.

If you lie down with dogs, you'll…
…stink in the morning.

Love all, trust…
…me.

The pen is mightier than the…
…pigs.

An idle mind is…
…the best way to relax.

Where there's smoke there's…
…pollution.

Happy the bride who…
…gets all the presents.

A penny saved is…
…not much.

Two's company, three's…
the Musketeers.

Don't put off till tomorrow what…
…you put on to go to bed.

Laugh and the whole world laughs with you; cry and…
…you have to blow your nose.

There are none so blind as…
…Stevie Wonder.

Children should be seen and not…
…spanked or grounded.

If at first you don't succeed…
…get new batteries.

You get out of something only what you…
…see in the picture on the box.

When the blind lead the blind…
…get out of the way.

Better late than…
…pregnant.

Sunday, April 1, 2007 5:07 PM CDT

Yesterday was a pretty good day all in all for Kendall. He did have some increase in pain, but the staff here was on top of it and able to keep him comfortable. Some of this maybe due to the fact he is developing tolerance to some of the medications, so dosages have to be changed.

We had some nice visits from friends from the Morgan Center. I am grateful to those who stopped by and Kendall actually reacted pretty well. I was reluctant to have other children come visit him, because he has been so difficult with Zachary. While Kendall does not look all that sickly (see new photo above of him in the playroom!), he tends to feign sleep when others are around and sometimes gets downright nasty with Zachary.... telling him to leave or never to come back. But as he is feeling better he is acting better too, and he was very happy to see his old friend Molly and her mom. She made a beautiful card that only Molly could make. Kendall also got cards from some of his other classmates, including Annie and Gia. Two of the moms also visited without their children, but maybe now that I have seen Kendall is tolerant of visitors (for short periods anyway) we can have them come too. Thank you Donna, Danielle and Josette for stopping by and for the various food, treats, coffee and toys. We are grateful.

Kendall had quite evening. He played Star Wars for a bit, then watched a movie and slept some. He ate an entire KFC chicken strip (a really big one!) and lots of Teddy Grahams, along with assorted bites of pasta and snacks. After Neil and Zachary left he went to sleep fairly early, and had a good night's rest.

This morning, with a lot of encouragement and proding... he walked to the playroom! He only made it half way, but this was mostly unaided walking (sometimes holding my hand or leaning on the pole for support... but mostly just by himself). I have a photo of him walking back out of the playroom too:



These were taken with my phone (I still do not have batteries for my camera, but Neil should be bringing some). They are also at an odd angle, but you can see him clearly standing on his own. It did take an effort and there was some pain, but he managed to get quite a ways down the hall before I had to pick him up. Not bad for a first try. The effort tired him, and between that and the benedryl he slept for the afternoon, but he woke up and ate a chicken strip and some more Teddy Grahams (I'm going to buy some stock in these... they are apparently the most addictive cookies ever!), and he is now waiting for Neil and Zachary to come and play Star Wars with him.

Penelope and Ryan McCormick are still struggling. Keep them and their families in your prayers.

I must add an urgent prayer request for another beautiful child from The Morgan Center. Sophia is an absolute sweetheart with a lovely family. They feared she was suffering from viral meningitis, but a spinal tap found suspcious cells in the fluid. She is currently in very grave condition. Please pray for her and her devastated family. They could use a miracle.


"I will be glad and rejoice in your unfailing love, for you have seen my troubles, and you care about the anguish of my soul."
Psalm 31:7

Saturday, March 31, 2007 11:26 AM CDT

The radiation may have had some effect already, or maybe it is the change in pain meds or addition of some decadron. But Kendall has been up more and more alert and comfortable the past two days. They did the simulation for radiation and one dose on Thursday, and he ended up being down there and sedated for quite a while. When we got back up, he was vomiting terribly. They finally got that under control with some Zofran. It was intially felt to be the anesthetic, but they only used propofol, and that actually has an antiemitic property. It doesn't make him vomit. The radiation oncologist said it was the radiation.... even one dose in the right area can do that. So from now on he will be premedicated with Zofran so he doesn't have to get nauseous. This worked great on Friday, and he came out of radiation just fine and was even standing up a bit in the morning. He got very tired and slept a lot in the afternoon, but was up playing video games with Neil until 11! He got hungry too... and ate a bit of pizza, one and a half bags of Teddy Grahams, and two slices of baloney (we didn't have any chicken strips... I will remedy that today!). More importantly, he did not throw up any of the food. His lab work is looking pretty good... they will make a few changes to his TPN. As he eats more, they will cycle the TPN so he is only getting it at night when he is sleeping. Kendall is no longer neutropenic, and his counts continue to recover. They want to see how the radiation goes for a few more days next week, then will likely make a plan to place a PICC line and have us discharged with some home nursing care. Most of what he needs we can do as an outpatient. We will try some other low-toxitiy chemos as well, but will probably wait until the radiation is done or almost done as so not to overwhelm his system.

I wish I could say that these therapies are given with the intention to cure, but I'm afraid that is not the case. Since he relapsed I have known that our time with Kendall is limited, and have tried to make the best of it. Mostly he has had a good quality of life, until recently. We are hoping to regain some of that quality so he can enjoy his 5th birthday coming up soon. I appreciate all the prayes, love and support we have and continue to receive. Just knowing people care and are interested in reading his updates helps a lot.

Our hearts and prayers also go out to our beautiful little warrior Penelope. Even through her pain and suffering, she still is more concerned for others than herself. She is truly a hero and an angel here on earth. Her devoted, but devastated family is by her side and could use your prayers and support. Little Ryan McCormick just came out of surgery and they are going to try radiation again, but his disease is particularly aggressive and fast growing so pray they have time to do it. So far they have twice had to cancel their radiation attempts while he underwent emergency surgery to stablize him.

I have taken to reading inspirational and biblical quotes again. These two really felt right today and I thought I would share them. Feel free to share your favorites with me:

"Learn to get in touch with the
silence within yourself and
know that everything in this
life has a purpose,
there are no mistakes,
no coincidences,
all events are blessings
given to us to learn from."
--Elizabeth Kubler-Ross

"Keep your fears to yourself, but share your courage with others. "

-- Robert Louis Stevenson

Wednesday, March 28, 2007 10:14 AM CDT

I'm sorry to say that Kendall has taken another turn for the worse yesterday. His pain increased and he started vomiting. He has not had a bowel movement in a few days, so they will try an enema to clean him out and some medication to help his gut motility to see if this takes some of the pressure off his stomach. He will also be having an ultrasound of the abdomen.

Sloan-Kettering got back to us and basically said that surgery is not an option. They don't have any other options right now, so we will begin radiation to the abdomen in the hopes of shrinking the mass and making him more comfortable. I am hoping that some low-toxity chemos will also help after that.

Thank you for all your prayers, kindness, and support. We have a lot of wonderful friends and family and many great organizations that have been helping us.

Please keep the brave and beautiful Penelope in your prayers as she moves on through hospice care in her last days. Also, please add Ryan McCormick to your prayers. This gorgeous little baby isn't even two years old, but his disease has just defied treatment and his family is also moving to palliative care.

Monday, March 26, 2007 11:31 PM CDT

Still no news from the doc's at Sloan-Kettering, but I expect we will hear one way or another tomorrow. If I can remember correctly, Tuesday is their team meeting day and they get together to discuss their cases. Hopefully they will be formulating a plan for us.

In the meantime, I got tired of the same photos, so I decided to change them. The opening photo is kind of a sad one for me. It was taken at CHOP in their clinic by an organization called Flashes of Hope. They have professional photographers take the photos, and the family gets a disk of them, the proofs, and a framed enlargement of the best shots. It is usually a wonderful and beautiful thing, and I had been trying to schedule a session with them all year, but my timing was bad and I'm sorry for it. The day they took that photo was the day I found out that the easy low-dose oral chemo we had been on was no longer working. I was trying to hide how upset I was from Kendall, and I needed to make a few calls. The Flashes of Hope people were there and asked if they could photograph Kendall. I said sure, figuring it would keep him busy while I was on the phone nearby. But I can tell from the sad and confused look on his face that he picked up more than I thought about the conversation. It is funny what those photographers can pick up. Kendall was actually playing cheerfully with toys and was laughing quite a bit. But every photo they took (click on his photobucket site above and go to Flashes of Hope subdirectory), looks so very sad. Oh well.

The photo of Kendall with the army men was taken with my cell phone this weekend. He is finally getting out of the room and really playing now. He cannot walk really, but he now can stand and can get in and out of the waggon and bed by himself. He is feeling better each day, with no fevers and is awake a bit more each day. He isn't eating much, but does request food and take a few bites. He is still on the TPN for now. Tomorrow it is supposed to be nice, and I will try to take him outside for a few minutes if I have time. I'm supposed to work in the evening (Neil will leave early), and he will be getting some physical therapy in the morning. He had his first consult today, and the therapist determined that he has no real mobility defects, but that he just needs to build his muscles back up. This is good as it means it is just that he is out of condition and not that there is some nerve damage (can be caused by the tumor or the chemos). She will start a program to get him back in shape tomorrow. He is already improving quickly on his own, but I would like him to be able to walk a bit when we leave.

Please keep our beautiful little warrior princess Penelope and her family in your thoughts and prayers as they move into hospice care. Also, my prayers go out to my brother's good friends who lost their four month old baby this week due to SIDS. There is nothing more devastating than the loss of a child, no matter what the cause.

Saturday, March 24, 2007 7:34 AM CDT

I still have no news from MSK, so we still have no plan in place. Maybe I will know later or on Monday.

But Kendall is doing a lot better since the port was removed. The fevers are gone and his ANC was 590 yesterday..... no longer neutropenic! (though still low). He was allowed out to the playroom, and we put him in a waggon and took him over. He played the Mario Kart game on the gamecube for about 40 minutes, then back to bed. He was in some discomfort at the time so they gave him some dilaudid and he slept a bit. During this time, Mom sat with him while I had the auto service come and jump start my car. So now it works. Fritz came with Zachary, and when Kendall woke up, the boys spent a couple of very normal hours playing Lego Star Wars on the play station in the room! I went shoping when Neil got here, and Kendall was sleeping. He was upset when he woke up, but he said it was from the pain so they gave him some more dilaudid. But when I got back, I noticed the bed was SOAKED!!!! I mean there was practically a pool under him. Once the nurse and I got him cleaned up and changed the sheets, he went right to sleep and was very comfortable all night.

This morning he has requested french toast for breakfast. We'll see. So far he only takes a few bites of food, but they put him back on the megace yesterday, so we will see how that goes. I will update later if there is any news.

Please keep our beautiful little warrior princess Penelope and her family in your thoughts and prayers as they move into hospice care. She has fought a long and brave fight, and has pioneered new treatments and therapies. Her father has been a great advocate and researcher.... trying to find cures and treatments and pushing the doctors and government to do a little more and try a little harder. It is with great sadness that I read her latest journal entry.

Thursday, March 22, 2007 10:08 PM CDT

Well, the port is out and Kendall is sporting a new temporary subclavian line. We will take the peripheral IV out of his hand tomorrow (he was simply not having it today!). Kendall did just fine, and the procedure went quickly and smoothly. At this point, we are staying with the TPN a little longer to let his stomach heal more. Kendall started to eat a bit now and then, but it is clear it still hurts somewhat going down and they just didn't want to cause further irritation. It is a lot better though, and so I think it will only be a couple of more days.

Kendall was in a bit of pain from the procedure, so he got a couple of doses of dilaudid today. But otherwise he was feeling pretty good, laughing with Neil and he was even a tad nicer to Zachary (very slightly). His fevers have been better. He had a slight spike up this morning before the procedure (38.1 or 100.6), then no fever until 8pm tonight when it hit 38.4 or 101.2. Note that these are axillary temps, so they are about a degree lower than if they were oral. Still, that is an improvement. Hopefully the fevers will be gone completely soon.

Kendall had a repeat echocardiogram today too. They did one the other day that showed a bit of fluid around the heart, which could be from the infection. Today's showed a tiny remnant of the fluid, and some scaring from where the port was. The cardiologist came up in person to read it in the room, and explained that there could be a small hidden pocket of bacteria remaining where the cather was. He recommended keeping Kendall on antibiotics for a longer period of time and repeating the test in a week. However, he noted that Kendall's heart function was excellent, especially when you consider how much treatment and problems he has had.

I still have no results from the scans. I could ask the doctors here for the reports from their radiologist, but I would rather not. That report by itself wont answer my basic question of what are we doing next. The doctors at MSK called to let us know that they got the films, and asked that our radiologist's report be faxed (this has been done). We expect to hear from them sometime tomorrow. I am trying to prepare myself for the worst, but it is hard. The truth is, I am much happier and function better in a state of denial. So any thought of possible upcomming bad news just gets kicked right out of my head almost as soon as it comes in, or else I get very depressed and have trouble functioning.

Humm... I'm getting depressing again. I think I'll fix a nice cup of tea and do a crossword puzzle. Maybe a nice shower too.

Wednesday, March 21, 2007 9:11 PM CDT

Sorry I didn't update yesterday, but I was a bit tired.

For starters, Kendall felt a bit better, though he still spiked a couple of fevers. I choose this day to try to work for a couple of hours. It was only from 4:30-8pm, but it was good for me to get away and do some mindless activity for a bit. Of course, it was a coordinating nightmare! But someone Neil, Mom, Fritz and Zachary all ended up at the hospital just in time for me to bolt out and get to work. Of course, I didn't realize that they would be doing the CT scan so late in the day. They sent up the contrast at 1:30 pm, and said I had to get two cups into him before they could start... but it could take up to two hours. Ummm Ok. We had a bad start, and he threw up about half the contrast.. but then we got going again slower and he was able to hold it down. But I had to leave in the middle of all this. Kendall was NOT pleased. It was a horrible scene. He screamed and cried for 40 minutes straight.... then settled down to whimpering and crying out on and off. Neil had me talk to him on the phone a couple of times to calm him... and finally Neil threw everyone out of the room and sat and talked to him and explained that he understood he was upset, but that I was not coming back until after his test was done, so he better quiet down and cooperate. After that Neil left the room to get some coffee, and Kendall was fairly quiet for my mom.

I think I forgot to mention to all of them the rather dramatic laxative effect of CT contrast mixed with apple juice and sugar. (I apologize in advance for those who are eating while reading this). Kendall hadn't had a bowel movement since Friday.... so a couple of hours after the start of the contrast, lets just say it was an explosive experience. My mom and a nurse did their best to clean him up while Neil held him.... the whole bed had to be striped. For whatever reason, they didn't call him down to CT until almost 8pm. Just as the couriers showed up, Kendall had enough huge bout of diarrhea, and they had to rush and clean him again. There was apparently another when he got back, and he was a mess again when I got there. (luckily for the last time). Amazing really how much one little body that hasn't even eating in two weeks can hold!

Anyway, we sent the scans off this morning to MSK, and hopefully will hear back tomorrow or Friday if they feel he is a surigical possibility. I don't want to know our doctors opinions of the scans right now (I'm pretty sure they won't be good), because the point of this scan is to see if we are able to do surgery and to determine what to do next if that is not an option. Kendall also had an echocardiogram yesterday, which showed a bit of fluid around the heart, probably left over from the general fluid retention he had last week. They did not see any "vegetations" or areas of infection, so this is a good thing. They will repeat this tomorrow or Friday. It is not causing him any current problems. However, they are going to remove his port tomorrow. The fevers still come fairly regularly, and even though the more recent cultures have remained negative..... that is most likely due to the high levels of antibiotics in his system. The line is the most likely cause of the constant infection and removing it is our only real option. They tried everything they could to save it. They will put a temporary line in while he is under.

Overall, Kendall is doing better and seems stronger and more able to move about. He did have a lot of discomfort today and I was a bit worried about that. I finally had them give him a dose of dilaudid. He was very happy after that and he ate a bit and laughed and played some with us (though he was a total brat to Zachary again!). Then Jinja, his nurse, brought in his new fentanyl patch. I didn't realize it was 72 hours already! I talked to the pain management nurse, and she said that if it seems like those last few hours are a problem for him as far as pain control... but the rest of the time is OK, then we can just switch the patch earlier if we need it. We will see how it goes, because the fever is causing a lot of his dicomfort so once that is gone we can better judge what he needs. But that is his first dose of dilaudid in close to two days, so I think we have the pain more or less controlled.

Kendall's mouth is much better, but now that he is eating he was getting some discomfort. But he was still eating through it and did not want any Magic Mouthwash. He ate some spaghetti with butter, and quite a few Teddy Grahams, and a handful of Goldfish. After, he did complain of a tummy ache, but he held the food down and soon settled down to sleep (tummy ache was probably due to gas or sores in the stomach). He didn't need any more medicine for this... just a little cuddling. He is still on the IV nutrition, so most of his calorie and nutrient needs are met that way. The plan on continuing this for a little longer. Dr. Prakash wants to make sure to give his digestive system adequate time to heal before trying anything else. I talked about having an NG tube placed for now, and later maybe a G-tube. This would be a tube implanted directly into the stomach with a small button port in the skin. It would allow us to give him liquid nutrition through the tube, while maintaning his quality of life. These tubes do not interfer with activities as much as the NG tube does. He would still be able to eat when he chooses, but we could give additional calories easily this way. But first he needs to get some better counts and his gut needs to heal properly.

For those who did not get to see the very beautiful Sarah Crossett have her head shaved on Fox and Friend's national morning show on Friday, you can click on her name above and see the photos of her before and after the shave. She is even more beautiful without hair! It is not too late to support this brave college study who hopes to one day be a pediatric oncologist. Neil and I were not able to directly be involved in a St. Baldrick's event this year (or last year), but we do support the charity. It may have a silly name, but they are a very serious organization dedicated to finding a cure for childhood cancer. St. Baldrick's is the major funding source for the Children's Oncology Group, which is the international consortium of hospitals that do most of the research and clinical trials for pediatric cancer.

Kendall's ANC continues to slowly climb and is now about 260. But he still has a long way to go (he needs to get over 500). Hopefully, once the infected port is out, he will quickly begin to heal and improve.

Thank you all those who love and support us and thank you for your continued prayers and good wishes.

Sunday, March 18, 2007 9:58 PM CDT

QUICK UPDATE: Monday, March 19, 2007 11:30 am:

Kendall's ANC is 148 now! He had a quiet night and morning. He only hit his pain pump twice since switching over to the patch, so they are going to take him off the PCA and offer him a dose of dilaudid if needed for additional pain control. We are holding off on port removal for one more day to see if the new meds work. They are also holding off on the CT until tomorrow in the hopes we can get him to drink today and therefore hold down the contrast. After his radiation I will try.

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Sunday, March 18, 2007 9:58 PM CDT


This morning started out kind of crummy. Kendall woke up uncomfortable and it took a few hits of the pain pump to get him feeling OK again. Then the fevers hit again, and he fell asleep after some Tylenol. He slept for the next couple of hours, until they gave him his vanco. I noticed after the dose that he had some hives. He has previously gotten an all over reddening of the skin after vanco, and they have tried to slow the administration for him. But this was a distinct hive reaction. So he got some benedryl and MORE sleep. He needed platelets, and they tried to give them during the effective period for the benedryl.... but by the time they got up and hung, it was a bit late. He got hives after that and needed more benedryl... more sleep. He was at least not in any pain though. They swiched him to a fentanyl patch today, but he still can get the PCA doses of fentanyl by pushing the button. They were concerned about losing the IV access, and this would be a better solution in the long run anyway.

The doctors came in and talked to me about pulling his line because it is still growing cultures and he is still spiking fevers. We initially decided to schedule it for Monday, and to have them try for another IV access line (either a peripheral or another femoral line) while he is out, plus have them drop an NG tube while he is out for nutrition purposes. I eventually would like them to put a G-tube in (it is a little port right into the stomach for feeding and medication purposes.... wouldn't impact his daily activities much), but his counts are still too low and it isn't a good idea to place it while he is still spiking fevers.

Later in the day, another doctor came in, and told me that after talking it over with his regular oncologist, they wanted to hold off on pulling the port and try him on Linezolid (Zyvox). The funny thing is I was just thinking of this myself! I had been reading in the health section of Newsday about how Dr. Nachman had saved this little girl's life ten years ago by talking the drug company and the FDA into approving this drug for compassionate use for a baby with a severely resistant bacterial infection. The article caught my eye, because Dr. Nachman was the infectious disease doctor who diagnosed Kendall! Three years ago we were referred to her for fevers of unknown origin, some limping, and some oddities in the blood work. She ordered some more tests, and quickly focused on the abdomen (not the leg where the limping was!). She instisted on an abdominal CT, even though Kendall was starting to feel better. I don't think I could ever thank her enough. The mass on his left adrenal gland was close to the size of a small cantelope!

Anyway, I digress. So they tell me lets try the linezolid first. I agree, then I went out shoping with Zachary while Neil stayed with Kendall. Of course, just my luck, I get into my car (almost slipping on the ice with Zachary!) and it won't start. "Click, click, click!". My battery is dead. I know I didn't leave anything on, so it must just be the cold and the fact I haven't started it in over a week. There are cars on either side of me, so it will be tough to jump too. I called mom, and luckily she was just pulling into the garage. So I took her car while she went to visit with Kendall. Zach and I had a great time at Target, and he enjoyed sitting down to a pizza dinner with me (if one could call Pizza Hut from Target pizza!). While I was gone, Kendall was apparently quiet, and whimpered occaisionally. This was a dramatic improvement from the last time I went out when he screamed his head off for an hour.

Speaking of dramatic improvements, when everyone left I noticed that Kendall seemed a lot more relaxed and alert than he has been. He was watching TV, and I asked if he wanted to play with his Webkinz. I have asked him this most every day for the last week or so, always with a sad head shake "no". Today, he thought for a minute, then said yes. Not only did he do the Gem Hunt (and found the Gem of the Day on the first try!), but he played with the computer for an hour and a half!!!! He even had me bring the table over and sit him up a bit, so he could use the mouse for some games. As if this miracle wasn't enough, he then asked me for some Teddy Grahams. This would be the first food he has eaten in a week. He only had a few, but it is a start. He did not throw them up, and he didn't seem to have any trouble swallowing or chewing them.

At 10:45, they took him off the continuous drip of the pain pump. He is now completely on the patch, but he can still hit the button for extra meds as he needs. As of now )(11:30) he hasn't touched the button or complained of pain. He is now sleeping comfortably and looking quite content. His temperature at 11:30 (about four hours after his last dose of Tylenol) is 37.5 axillary (99.5). We are holding off on Tylenol for now, but the nurse will keep a close check on him.

This was the first he has played in a week. The first interest he has had in any toys (he was also playing with some of his Star Wars figures and his dinosaurs earlier). The first "normal" conversations and interactions we had. I don't know if it is the new antibiotic, he only got one dose so far, or if the other antibiotics finally started to work, or if it is the healing of the mouth sores and thrush or if it is just that his counts are recovering better (we will not know this until the morning) and he is finally getting through some of these things. Or maybe it was just that everyone prayed a bit extra hard in Church today. Whatever the reason, it was great to have a few hours of the old Kendall back!

Tomorrow I will get up early and try to figure out what they are doing with his line.

Sunday, March 18, 2007 4:34 AM CDT

Kendall was about the same yesterday (Saturday). He continued to spike fevers, though at times they went a little longer than the usual four hours when the Tylenol wore off. His mouth still hurts, though he was talking and swallowing a bit better. He is using the magic mouthwash so he can tolerate the other oral meds.

He had a long period of time awake and relatively comfortable today when Neil and Zachary came to visit. He was talking and laughing with Neil a bit, and he even played a bit on the computer with his Webkinz Pola (thanks Alicia!). But he is really not up to playing and he tires quickly. After they left he slept for an hour or so very comfortably. Then my mom came and when he woke up he was making a whimpering sound. He didn't want his pain med (though I think he did hit the button at some point), but continued to whimper and whine while my brother Nick and his wife Liz came. I explained that I wasn't leaving, but he just didn't seem to want visitors today. He calmed down once everyone left. We spent another hour or so doing his various meds, and watching TV. He slept pretty comfortably, though he woke up at 5 am with fever again, and the nurse took more blood and cultures and gave more Tylenol. He is sleeping again now comfortably.

So this is where we stand. The port is infected and likely has to come out. He has one peripheral IV in his hand that they run the pain meds through constantly. They pulled the foot line because of some slight swelling and were unable to place another after two tries. They decided to discontinue the TPN for a time to focus on pumping maximum antibiotics through the port and running maintanance fluids through the rest of the time. On Monday we will decide what to do about the port, and figure out how to best handle the CT scan. His mucosites (mouth and digestive system sores) should improve by then, and he may be able to drink the contrast, or possibly we talked about putting an NG tube in for it. This also has the advantage that we could use it for nutrition for a while until his counts are good enough to place a G-tube (port in the stomach). His counts dropped slighly today, but he still has an ANC. It isn't uncommon for the white count to go up and down a bit in those first days, though I hope today we get a good bump up in the numbers.

So we still wait and hope. Pray for a good CT scan on Monday(or Tuesday) and pray for that line to clear. They can put a new line in, but would first have to clear the infection....so it would mean using peripherals for a few days... not desireable.

Thursday, March 15, 2007 7:39 PM CDT

QUICK UPDATE: 3/15/07 1:30pm

We have an ANC! The engraftment has finally begun. Kendall's white blood cell count went from 0.1 to 0.3 today, and they found some neutrophils with an ANC of 99! This is just a start, but we are hopeful.


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Thursday, March 15, 2007 7:39 PM CDT

Kendall slept a lot again today, probably due to a combination of sedation in the morning, benedryl (premeds for platelets and for vanco. The fevers still continue to spike up, and now he has painful sores in the mouth and throat, making it difficult for him to swallow. He's never had these before, but I'm told they are a common effect of the type of chemo he got. It should get better in a couple of day. They have some meds they put on to help it.

We are back on the regular oncology floor, but the PICC line was not put in due to scheduling issues. Hopefully they will be able to do that tomorrow, and that will allow them to pull the IV from his hand. They changed some of the antiobiotics in order to battle the fevers. We plan to do a CT scan on Monday or Tuesday to evalute him for possible surgery. I'm afraid they will not be able to do it unless his counts start to come back. But we need to know if it is even possible. If he is not a candidate for surgery, they will do external radiation. I don't know if we wil scan here or at MSK. Dr. Kushner's office called today, and he emailed Dr. Parker. They are going to talk it over and decide where to scan. I think it is more likely we will scan here. If they want to try surgery and need different scans we can always re-do them. If they don't feel surgery is an option, then it saves us a trip.

So still we wait and pray.

Do not forget to watch Fox news tomorrow morning between 8 and 9 for the beautiful Sarah Crossett who will be shaving her head to raise money for St. Baldricks. Click on her name to got to the St. Baldrick's website and support this brave young woman who is raising money in honor of her sister Rachel who died several years ago from neuroblastoma. Click on Rachel's name to bring you to her website. It is very sad, but there are some links to some great information there so I figured I'd add it to my update. Particularly the sections about Research, funding and the law.

Thank you all for keeping tabs on us and for your kind words and prayers.

Wednesday, March 14, 2007 11:30 PM CDT

We mostly had a quiet day today. After his radiation, Kendall slept a long time, but woke with another fever spike (102.7). Frustrating! He was cranky from the fever, but it was quickly reduced with Tylenol. It was decided not to put another line in the groin, but to have a PICC line inserted in the arm. It was also decided that after that we could be sent back over to the oncology side as his blood pressure is now well controlled. Unfortunately, as sometimes happens in the PICU, more emergent cases kept taking president and we kept getting put off. Finally, around 8:30, they came and said we were next, but then another emergency case came and they decided to schedule Kendall's line placement for tomorrow. I was fine with this as I don't want them doing it at the end of a long day when everyone is tired and stressed. The person who usually places lines for the PICU will be off several days, so it will be done down in interventional radiology.

Kendall's pain was better today, but the fevers came every four hours (just as the Tylenol wore off) and made him uncomfortable. Also, he is now complaining of pain in his mouth and throat, and it seems he now has some significant mouth sores. The thrush is also back. So they added nystatin to his meds. He took his first dose pretty well considering how sore his mouth was. Needless to say he wasn't interested in eating or drinking. Hopefully his throat will feel better tomorrow.

I did get him up twice to sit on my lap for a bit, and made him stand a couple of times (he didn't like this much, but he was able to do it). I was worried about his muscle condition in his legs. They have ordered a PT consult, and we will likely have that sometime tomorrow.

That is all for now, because apparently we are getting moved back to Oncology now! Yes, at midnight. Luckily, I don't have a lot of stuff here. I will update tomorrow, and hopefully will have some more positive news. All in all, other than the fevers and mouth pain, Kendall was very comfortable today. Hopefully he will start to show some serious white cells soon!

Tuesday, March 13, 2007 10:08 PM CDT

QUICK UPDATE: Wed. 3/14/07 10:15 a.m.

Kendall still has fever this morning, but the culture in his port was negative for the first time! They want to see one more day of no growth before replacing the femoral line, but this is a good start towards healing. Other good news, his WBC count has moved from >0.1 to 0.1... that means they are starting to see some cells finally. It will still be a while before we expect any neutrophils (the ones that fight infection), but at least things are moving the right direction. I will update more fully later.


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Tuesday, March 13, 2007 10:08 PM CDT

Things are about the same here, though improved in some ways. Kendall has started requesting food and actually eating some of it. He had most of a cherry italian ice, some milk (just a few sips), and half a bag of Teddy Grahams. While this isn't much, the fact that his appetite is returning and he isn't vomiting everything is good. He did feel a bit queezy this morning, but that was after the anesthesia and radiation treatment (which went fine this morning, very quick). A little zofran took care of that and he held down all his oral meds and what little food and drink he had. He is still having some pain, and they made some more minor adjustments to the pump levels. One of the problems is the fever, which makes him very uncomfortable. But is is controlled with Tylenol and hasn't gone over 102 at all today. His port is still growing bacteria, so I think they will not put another line in yet. They do want to replace the femoral line and remove the IV's in the hand and foot as this would be more comfortable for him. However, his blood cultures must be negative first. He still has no white blood cells to help fight the infection, so we just have to be patient and wait.

Still, he had much more alert periods today, and even played some Lego Star Wars on the playstation with me... though we had to stop because he got frustrated with my total lack of ability to play the game. Apparently, team work is important in that game, and I am useless! He did a remarkable job of manipulating the controller with one hand, sometimes using his thumb from the hand with the IV in it (the IV is in the hand near the wrist, and he has a board taped to his hand to keep it straight). He also got a good wash down today, and has started sitting the bed up more and not just wanting to lie down all day. He says his legs hurt too much to stand on, but I think this could be due to not using them much. I may ask for a physical therapy consult to evalute this.

So we still wait for those stem cells. He is likely to start to feel better once they start to grow.

Two things I want to mention today. First of all, for all our Long Island friends, the sisters of one of Kendall and Zachary's friends at the Morgan Center are hosting a bone marrow drive at their school in Lindenhurst:

The Lindenhurst School District approved the bone marrow drive!!! The details are as follows:

Bone Marrow Drive in honor of Jacqueline and Harrison:

Margaret McKenna Building
350 Daniel Street
AP Room
Lindenhurst NY 11757
May 18, 2007 from 2 p.m. - 9 p.m.
**PLEASE SPREAD THE WORD - WE ARE LOOKING FORWARD TO A HUGE TURN OUT!!

No blood will be drawn, they are only going to take cheek swabs. Please consider being a donor. There are so many people whose only chance for a cure is to find a matching marrow donor. The usual fee for testing will be waived for this event, so come on down and show your support for Heather (age 14) and Kristina (age 12) as they do this in honor of their sister and her friend. You can read more about the marrow donation process at: The National Marrow Donor Program. They are always looking for new donors as they try to find matches for people, and especially those who are American Indian and Alaska Native, Asian, Black and African American, Hispanic and Latino, Native Hawaiian and Other Pacific Islander, and multiple-race donors. I plan on going myself too!

Another way you can help support childhood cancer is with a donation to St. Baldrick's Foundation. Neither Neil nor I have the time right now to properly fundraise for a shaving event of our own, but I'd like to encourage everyone to watch the Fox Morning News show on Friday, March 16, 2007 between 8 and 9 o'clock. A beautiful college student named Sarah Crossett will be shaving her head in honor of her little sister Rachel who died from Neuroblastoma. Her mom is a member of my online support group. I think it is great that this beautiful girl is willing to do this in order to help raise money for a good cause. The St. Baldrick's foundation helps to support vital research for children's cancer for the Children's Oncology Group. As you know from my previous posts, this research is severely underfunded by our government, so these private donations are really critical.

Thank you everyone for checking in on Kendall. Hopefully things will start to really improve soon.

Monday, March 12, 2007 12:56 AM CDT

UPDATE: 7:15pm

Kendall is a lot better today and more "Kendally" as Neil puts it. He still has some fever, but it has tended to be much lower. It did spike up a bit when he got his Tylenol late and he was aggrivated from the placing of the peripheral IV lines, but came down once the Tylenol was resumed. He now has a line in his hand and one in the foot for meds, and we are still using his central line for the TPN (nutrition). The removal of the line in his groin was very quick and absolutely painless. He is now sleeping quietly, but he was sitting up for a bit today and he was talking up a storm. He also took his first bite of food since March 2 - the day after chemo started! It was a tootsie roll. Not a whole lot of calories, but you have to start somewhere. It is just another sign that he is starting to feel better. He hardly touched his pain button today, though they did very slightly up his dose. The hope is that will help keep the blood pressure from spiking up (they feel it is slighly high from the tumor and treatment, but that the higher spikes are related to the pain). We will see if that does anything to help. Since the increase, he has only hit his button for extra pain meds once, and that was after a whole lot of manipulation and pulling to get him changed and ready for the line placements.

So overall he is doing a lot better, and we are hopeful that his counts will start to come up in the next week or so. Thanks for checking in and for all the prayers.

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Kendall continues to improve, and his fevers are down, though not entirely gone. They have been ranging today from 100.3-101.5 (orally). They took him off the cooling blanket and just use some cool packs under the arms and Tylenol every four hours. He is pretty comfortable with only minor twinges of pain (he occaisionally pushes his button for more pain meds.... but not as often as he was). They are going to slightly up the continuous dose to hopefully help even things out and help keep the blood pressure down. They are also going to try him on the oral blood pressure meds again. His pressures have been more stable and lower now that the fever and pain are better.

They are going to place IV's in his arms (will give a sedative first) and pull the line from his leg. These bacterial infections are hard to treat when you have so many sites (all three of the ports from the femoral line, as well as his main port in his chest grew bacteria on cultures). This will help take away a large source of the bacteria, and they feel they can treat the mediport line more efficiently then. We would like to try and spare that line. However, if it has to go, it has to go. These are not things that should be fooled around with. Still no significant white blood cells, but hopefully some will start to come in over the next week.

So things are a little better and we hope they will improve quickly as his counts come in. Thank you to all who wrote, called, stopped by, and left messages in the guestbook.

Sunday, March 11, 2007 7:17 AM CDT

Well, the rollercoaster continues to go up and down, and we are currently back in a downslope. Yesterday started well enough, but he had a bit more pain. So pain management increased his settings on the PCA pump, and we had a comfortable and quiet morning, with Kendall alert and talking to me and requesting movies to watch. He had a couple of sharper pains, and some vomiting, but those were quickly addressed with pushes of Fentanyl and Zofran. Throughout the day he had a low-grade fever of 99.8, and his blood pressure began to rise. They started him on some blood pressure meds to lower them, but he vomitted them up. We finally got some into him, and he had a nice visit from Grandma Noni, and later Neil and Zachary came. He still was pretty comfortable, except that he wanted me to cuddle him more and his blood pressure kept creeping up. Somewhere in the middle of the night, the fevers started (I was actually asleep). At first, they were in the 38-39 range (100.5-102.5), but at some point (I was in and out of sleep) I woke to some very concerned doctors and nurses hovering around in the room, and they told me his fever had hit 41 degrees ... 105.7!!!!!!!!!! That got everyone moving, and he was quickly placed on a cooling blanket, more Tylenol was given, and he was put on the monitors. These can be read in the PICU area as well as in the room, so that the nurses can be alerted to any emergency. He vomitted some more blood pressure meds, but we finally got some in him while he was sleeping from a combo of Fentanyl and ativan. Eventually, they also gave some Morphine to slow his heart rate.

Kendall is comfortable again now. They are keeping a close eye on him. I will try to update when I can. I do have a laptop here. Please say a few prayers for Kendall today... specifically that his fevers abate, his pain goes away (or at least stays under control) and that they can get his blood pressure back under control. Thank you all. I have been getting your emails and guestbook messages, but there is no way for me to personally respond to everyone. Know that I am grateful for alll the love and support.


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UPDATE: 3/11/07 - 1:00pm

We've been transferred to the PICU. Kendall's fevers are still high (ranging from 102-105), even with Tylenol, cooling blankets, and cold compresses. He is shivering though. His blood pressure is still high, though a bit better. This was the reason for the move.... they are putting him on an IV blood pressure med, and to do that they need the more thorough monitoring that you would get in the PICU. They cannot sustain the one-on-one nursing on the regular oncology floor indefinately. We are actually only two rooms down from where we were, but now he is very closely watched. They are changing some of his antibiotics and meds too, so we will see how that goes. I will update later.


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UPDATE: 4:00p.m.

Kendall is a tad more comfortable, the fever is down to 103.9 (still high, but less scary), and his heart rate and blood pressure have lowered as well. He is still shivering, but not as bad and he is more relaxed.

The cultures from last night grew a Gram Positive cocci on one of his lines. This is good as they are now giving him Vancomycin, which is good for that. That is the big gun of antibiotics, and in the past has been quick to help him. Keep praying!


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Kendall is sleeping peacefully with some benedryl. He still is shivering and still running fevers, but is stable for now. His blood pressure has been good for a bit, but now seems to be fluctuating again. It is hard to monitor with the machines because of the shivering which throws them off. They are switching to manual units for him. They will give some meds for that if needed.

All four lines cultured positive with very rapid growth.... probably some type of strep, but we should have more info tomorrow on the exact nature of the infection and which agents it is most sensitive to. The doctor said it was good he had a fever, because often these kids immune systems are too weak to even mount a response to these bacteria..... giving them time to get out of hand before anyone even knows about it. Tests were negative for shock so far, so we are in somewhat better shape than this morning.

I didn't get to see Zachary all day, as he seems to be catching a mild cold. Thank you to Laura from my church and her wonderful son Jonathan for entertaining him for a few hours while my mom ran some errands. It is hard for him to not have other kids to play with. He misses his brother and me terribly, but is holding up well under the circumstances. Kendall is not usually nice to him when he is sick, as he just wants my full attention, so even his visits here have been very emotionally tough on him. He is a good and understanding brother though, and is just such a sweet kid. I'm going to try and sleep a bit now. I will update in the morning.

Friday, March 9, 2007 2:52 PM CST

Cross your fingers, but I think we may finally have achieved pain control. The pain started to improve sometime in the middle of the night, and today he has been relatively comfortable. He got a dose of ativan to relax him so he could have a renal artery ultrasound to see if there is any constriction of those vessels. I will talk to the Nephrology team later, but the prelim was good. They may order an ultrasound that is more specific for the kidneys and bladder, just to see if they can find any obvious source of the pain. He also finally got his simulation and first radiation treatment to the leg. They decided to only do 8 treatments after a close examination of it. He was fine for that now that we had him sedated. They will sedate him for it each morning if needed. They use a very short acting drug that is easily tolerated. He did just fine, though the doctor had to add in a few extra doses of fentanyl, because the manipulation of the leg and keeping him on his back was causing some pain. The anesthetic they use is not great at controlling pain, it just makes you sleepy.

I wanted to thank all those who wrote, emailed, and signed the guestbook. It can be very hard to be alone here with a child in pain, though the nurses here are wonderful and spent a lot of time with us.... hugging, crying and even praying with me. For that fact, I credit the prayer of one dedicated nurse right before she left with the onset of Kendall's improvement. She was very distraught (as we all were), and asked if I minded, and she said a quick, but heartfelt prayer. I will never forget this. It is sometimes an issue in a hospital for the staff to bring up their religious views. It is always a risk that someone will take offense. Usually they just will recommend that the chaplain come, or will offer to call your priest. It is rare that hospital staff will publically pray with the family unless specifically requested. She is yet another angel we have met here on Earth.

I found this essay on another site. I wish I could give credit to the author, but I copied it from someone who copied it from someone else. I will try to find out and credit the proper person. I read it yesterday at a time when I was at my lowest, and it just brought me to another perspective and helped to renew my strenght and faith a bit:

"I have Cancer. There isn't an explanation as to why I became sick, all I know is God has a plan for each of us, & for each plan there is a purpose. Some of us know what our purpose in life is, & others will never find it. Then there are those like me who accomplish it w/o ever realizing it.

My journey w/ cancer won't & hasn't been w/out purpose. It's thru my illness that I've helped Dr.'s understand the disease a little more so they may find a cure; It's thru my illness that I've opened the eyes of those around me to how precious life really is. Something we all too often take for granted.

It's thru my illness that some of those around me have realized that life is too short to be afraid of our feelings. My cancer is being beat back by the power of love. It's the most powerful of emotions, one not to be afraid of, but to be embraced. To be loved by someone unconditionally & completely is to reach into your soul & feel warmth.

It's thru my illness that I've shown there's no guarantee for the future--only dreams for it. Whether the future is just another day or another 75 yrs., we should all dream big & live fully everyday.

It's thru my illness that I've seen the strong cry, only to find more strength.

It's thru my illness that some of us who haven't talked to God in a while have once again begun to pray.

It's thru my illness that I've joined the hands of those familiar to those of strangers, to form one long chain. I've already accomplished so much in such a short amount of time, & each day I continue to touch the hearts of many.

THAT IS MY PURPOSE(taken from another CB site)

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Thursday, March 8, 2007 12:26 AM CST

I wish I could say things are better, but unfortunately Kendall's pain continues and is difficult to control. The pain management team has been here several times trying different things. First they put him on a PCA pump with dilaudid. There are a lot of advantages to this as he can control when he needs the medicine by pushing a button. I went out for a couple of hours to shop yesterday while he was sleeping. Neil, my mom, Fritz and Zachary were all here to keep him company though. He woke up about an hour later screaming for me... so Neil called me to come back. He would not push the button and claimed there was no pain. But when I came back a half hour later, he was in agony and flailing around banging his head on a pillow. It was an absolutely horrific sight. He pushed the button for the medicine, but it was too little and too late. He was now frantic. They gave him some ativan to calm him, and he slept for a bit. But we went though this all night. He would sleep for an hour or so, wake up soaking wet (he is now peeing all that extra fluid out.... he is almost back to his normal weight.... this is good because it means his kidneys are processing the fluids better without additional diuretics.... his blood pressures and other vitals continue to be good too). So he would wake up, scream, push the button, then I'd spend a few minutes soothing him, change him, change the sheets and absorbant padding as needed, he'd go back to sleep, and we would repeat this process in an hour or less. I had them give more ativan once in the early morning, and once today to give him some longer period of calm and sleep. This did help a little, but he is still having these waves of pain.

So they are going to try him on Fentynal (sp?) in the pump. He would get a small continuous dose, then he could push the button for additional if needed. The continues dosing will hopefully head off the pain at the pass. If this works, he may be switched to a patch system, but he is a bit small for the smallest patch. They want to try introducing the drug IV first to see how he tolerates it, then they can decide if the patch will be too much for him or not. Right now he is basically in a semi sedated state all the time.

I think once we get the pain under control he will start eating and playing again. He is on TPN now, so that will give him his nutrition needs for now. My nerves are frazzled and I'm working on almost no sleep, so if I get a little unreasonable or snippy, try to understand.

I usually do not like to post such horrible and negative updates, but I use this site as a journal of his treatment as well, and it is important for me to remember what he had, what worked, what didn't, what reactions he has had. The truth is that cancer sucks, and children should never get it. Never. But we have been fortunate up until now. This is the first really bad pain experience he has had. And the staff here at Stonybrook is really amazing and attentive, which is hard to do when they are so packed (every room full and a few on the north side!)

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Tuesday, March 6, 2007 5:40 PM CST

Kendall had a much better day today. The extra fluids have started to come off with the help of a little lasix. He was actually starting to void them without it on his own too. His blood pressure has been down and his breathing is good with good oxygen saturation. They still have the blow-by oxygen on, but no mask. The blow-by is really to help add moisture into the air right now so his nasal passages don't dry out so much again. The nose bleeds have stopped and his skin looks a lot better, though still itchy in places with lots of red. They are switching from Benedryl to Atarax to help control the itching and skin redness, and from morphine to dilaudid for pain. Even before all that, he was much more comfortable today, and spent a good deal of the day sitting up in a chair. He was tired, but he played some simple games on the computer, and played with some Playdoh for a while. When my mom came he was happy to see her and talked to her and even talked to Neil on the phone. They switched the pain meds to PRN (as needed) and he has been requesting them every four hours or so (he was getting them every two). I even noticed that he was laying in different positions for the first time in a week. Up until today, he has been reluctant to lay on his left side, today he was on the left for a while and on his stomach. He still finds lying on his back uncomfortable for any lenght of time, but he did it to have his port access line changed without too much trouble. So far, no fevers today.

The started him on GCSF, but instead of shots they are giving it IV. It takes a while to do it that way, but sooooo much less painful! I don't know if I will need to continue these at home or not. I hope not. I hate those shots. It would be kind of hard to give it IV at home, though not impossible. I know many who do it. But it would also mean he has to stay accessed. We'll see. A lot depends on if they continue TPN at home.

As far as that goes, we haven't started it yet, but are expecting to tonight. He had too many things going on yesterday to start. They always start it at night, so I'm sure we will see it soon after the nurses give report. But Kendall has started to show vague signs of an appetite finally. He asked for mozzarella sticks, but didn't eat them. He had a bite of pretzel, and he ate a half a cup of cherry ice. This isn't much, but it is a start. The fact he didn't throw up anything is a good sign that his gut is working OK. He is taking quite a few oral meds too, and tolerating those just fine.

Thanks for checking in on us. We will likely be here for a few more days.

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Tuesday, March 6, 2007 5:13 AM CST

We had a rough day yesterday. One of the roughest since the sepsis/bad reaction to pentamidine incident back in 2004. But Kendall is much more comfortable and stable now, thanks to the quick attention of his overnight nurse.

He started out going into the stem cell infusion with a lot on his plate. Kendall has been retaining fluids (he hasn't eaten in five days, but gained over 5lbs!). He received a red cell transfusion on Sunday, and was starting to need platelets, but they figured they would hold them off until Monday night well after the stem cells. His platelet count on Sunday was 12k. He was having some very slight nose bleeds. On Monday morning, they dropped to 5k and some bruising was starting to show. But the stem cells were scheduled for 2pm and the did not want to interfere with that. Also during this time, he was developing a terrible itching... probably due to the morphine (he's been getting it every two hours). They added in some more benedryl and we will see if that helps.

Usually, these stem cell infusions are absolutely borning and anticlimatical. Kendall's other three were like that. With this one, it was a lot more stressful. He was already overloaded on fluids, and the stem cells pump more in. The itching was getting worse, probably because of the preservatives the cells are stored in. Also, one of those preservatives, DMSO (the one that creates that distinctive smell in the room) can cause some temporary irregular heart rythms. You guessed it, that is what happend with Kendall. During the infusion we had three doctors and three nurses in the room all scurrying about trying to get the right meds in to relieve his symptoms. Kendall was filling with fluids fast so they gave lasix and more benedryl for the itching. Luckily he had a dose of morphine to start the whole thing and he was at least not in sharp pain. Once he started going to the bathroom, the fluids began to lessen and he began to feel slightly better, though the itching was still there. Then he said he couldn't breath and got really distressed. His oxygen levels had been a bit up and down (probably from the pressure of the fluids on his lungs) all day, and they had some "blow-by" oxygen on him, but decided to switch to a mask to give it more directly. This helped, but it wasn't until he started to void the urine out that his breathing stabilized.

After the stem cells, he filled a couple of urinals and some of that seemed better, but then they noticed his heart rate running very slow... it was making drops down to about 50 bpm or less! After much discussion, it was decided that this was due the DMSO and it would improve as he blew that drug off. His monitor was kept hooked to the PICU service where the nurses there can keep an eye on all his vital signs. It was decided to hold off on the morphine dose as he was sleeping and we were worried that it could affect his breathing even more. Of course, we knew this meant that when he woke up he would be really screaming for it, but it was safer this way. Little by little he stabilized, then they had to get those platelets into him (he bruising and nose bleeds were getting worse. So they premedicated him again and began that run (now it was about 6 o'clock. Right around then was when he woke up and began screaming in pain. The nurse got him the morphine, but it took a while to get him comfortable again. I finally picked him up, wires and all, and began rocking with him. He calmed and I sat with him sleeping on me for a couple of minutes, giving the nurse time to get the bed changed (soaked again!).

My mom and Fritz and Zachary came for a quick visit around then, and he seemed pretty comfortable. I had dinner with Zachary and my nephew Nicholas in the family room. We did let Zachary in for a few minutes, but mostly he sat with me. Kendall was in better spirits and actually asked for Pizza and soda! This is the first food request since last Wednesday, other than a request for a some milk last night (he took two sips). Of course, he didn't eat the Pizza or even try to. Nor did he drink the soda. But the fact he wanted it is good. Everyone left, and we settled back in. The platelets were just ended, when I noticed something that wasn't there a minute before. A huge hive had begun on his eye. It quickly swelled up and more began to spread. Many more broke out all over him. He began to itcy massively again. The doctor said to give an extra dose of benedryl IV and that slowly did the trick. More lasix and he eliminated more fluid. The morphine was switched to as needed, and his breathing and heart rate began to normalize. By 10pm he was resting comforable, and breathing normal. Every time he cried out, about every two-three hours throughout the night, that nurse was there within seconds (we are in front of the nursing station, but there are two doors between us). She was the fastest nurse I have ever seen. She would quickly assess what the problem is (mostly pain, but once just that he had to pee), and got him what he needed very quickly. She explained that she only had to care for Kendall and one other very sick boy tonight, so that she could give him that kind of attention. The other night nurse graciously took care of all the others on the floor (they are pretty busy here too!). I didn't even have to get out of bed until 5:00 when she went to get him morphine and he was trying to climb out. He is bed was wet again so I got up to change it while she got the meds. He was back asleep within less than 5 minutes.

His skin looks a lot better now, all his vital signs are normalizing, and he is very comfortable right now. The fevers have been gone (his temp was actually low today), and a lot of the skin reddening seems to have gone too. So we are hopeful that the worst is past. Nothing has grown on the blood cultures, so they may take him off some of the antibiotics. We didn't start TPN last night because he was just too overloaded with fluids, but will probably start sometime today. They are also supposed to start some radiation to the leg on Wednesday.


On a sad note, I heard that Kendall and Zachary's classmate Caroline passed away yesterday. She had relapsed leukemia, and was suffering from complications of a virus she picked up after transplant. Our hearts and prayers are with her grieving family right now. It is just devastating.

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Saturday, March 3, 2007 4:26 PM CST

Kendall is still hanging in there, though the chemo is rough on him. His pain has increased to the point where he needs morphine every two hours. They are just scheduling it now and not waiting for the pain symptoms to start, so it keeps him fairly comfortable. He hasn't been eating, though that is not a surprise. They will start him on TPN (total parental nutrition), a type of IV nutrition soon to help build him back up. Unfortunately, he IS gaining weight. He is up about 5 lbs from Wednesday. This is from fluid retention. His abdomen, legs and face are swollen and puffy. Today they will start him on some lasix to try and get some of that out of him. He was breathing harder today too, and a chest x-ray revealed some cloudiness in his right lung that could be an early sign of a pneumonia. But he is getting antibiotics, and the lasix should help releive some of the excessive fluid. He currently has four IV lines running into him! (the one in the chest, and three in the groin). It isn't really a surprise that he is retaining some fluids either. Hopefully that will all improve as his counts return and with some medicine. Kendall has never had or needed this much medicine before! It is a bit scary. His chemo will be done later tonight (36 hour infusion of doxorubicin and vincristine). He is done with the other chemo (high dose cyclophosphamide). The combo was designed by the doctors at MSK specifically for Kendall, taking into acount his current health and his past doeses of chemo.

Now that Kendall gets the pain meds regularly, it keeps him pretty comfortable. He got up in a chair for a bit today and played Connect Four with me, and spent an hour sitting up in the bed playing Spiderman on playstation. The more we get him up and move him around, the faster the fluids will get out. Once they pull the line from his leg, I think he will be more willing to move around more. He was standing and climbing in and out of bed with a good amount of strength, so I feel very hopeful about this.

I just found out that a friend from The Morgan Center, Caroline, is in a very bad state right now. She has been battling relapsed leukemia for close to a year now and has has quite a few complications. My heart goes out to this beautiful family. She is currently on a vent with pneumonia, and her options are limited right now. Say a little prayer for her, and for all of these beautiful children with cancer. It is unbelieveably horrific to watch a young child suffere through this diseases.

I hope my friend Kim doesn't mind, but I liked her entry about the Childhood Cancer Act so much, I copied the information and will share it with you here:

"We have become increasingly aware of a current proposal from President Bush asking Congress to cut spending on cancer research.

Did you know that:

12,500 children in the U.S. are diagnosed with cancer every year. Of those only 600-650 will be a Neuroblastoma diagnosis.

2,300 children and teenagers die each year from cancer

Childhood cancers are the #1 killer of children - more than asthma, cystic fibrosis, diabetes & pediatric AIDS COMBINED

On average, 1 in every 4 elementary schools has a child with cancer. The average high school has 2 students who are a current or former cancer patient.

The cause of most childhood cancers are unknown and at present, cannot be prevented. Research is the only key to the cure

Pediatric cancer research receives the least amount of funding from the National Cancer Institute's Budget ($29 million) Adult cancers receive close to $5 billion, yet heart disease is the #1 killer of men and women.
President Bush's new proposal will eliminate research on rare pediatric tumors ----Neuroblastoma is one of those tumors!!!

Ryan's cancer, while currently in remission, has a high rate of reoccurrence. If it should return sometime in the next 4 years his treatment would be based on studies, but if there are no studies there will be no new treatments offered.

You can help by sending an e-mail to your local politicians. Log onto the following website http://www.curesearch.org/news_and_media/news_article.aspx?id=4470 . On the left it says "Take Action Now" and underneath you click on "Write to Congress." You enter your zip code, select your reps, and direct e-mail. There's a standard letter or you can compose your own.

Encourage your reps to pass the Conquer Childhood Cancer Act and to stop budget cuts to cancer research.


Well put.

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Wednesday, February 28, 2007 9:02 AM CST

We are off to Stonybrook for a week of inpatient chemo treatment. Kendall will be getting doxorubicin, cyclophosphamide and vincristine. He hasn't had most of these since relapse, so hopefully they will help set things back in the right direction. Kendall had a bad day yesterday with the pain. They gave us a prescription for a time released oxycodone, and that did the trick! It is very disturbing to see your 4 year old looking all doped up like that, but after a while he was more comfortable and cheerful, and we actually had a pretty good night. He slept really well, and we are no late getting to the hospital. Oh well! It still seems to be working, even this many hours later. He woke up happy and cheerful. Stonybrook doesn't have an easily accessed computer, so I may not be able to update much or read websites, but will catch up when we get back. I expect to be there for the better part of a week. One of these days I have to get a laptop!

Keep our friends in your prayers, baby Austin came through surgery like a champ. I don't have time to set up the links. I am reposting the second part of my last journal entry, because I still think it is important for everyone to get out the message to their congressmen that they are not going to balance the budget on the backs of our kids! Believe me, there are plenty of wasteful areas where they could make the cuts from. Thank you to all those who have written already. I have gotten a lot of feedback on this particular issue, so I know that many of you consider it important too. Our children have no voting power (which is why cuts are continually made to their programs), so their only hope is that those of us who represent them can stand up and be counted. (BTW, I am not suggesting that they cut cancer research for adult cancers instead of pediatrics... many times that is the only way we get any new meds is they trickle down from other cancer reaserch. The cuts they were discussing would be to ALL cancer research...especially affecting rare cancers).

********************************************

Some of you may have heard Dr. Greg Reaman on ABC news talk about the impending budget cuts to cancer research, and specifically to pediatric cancers. The only reason Kendall is even still here today, is because of the clinical trials. Further budget cuts will mean that less of these trials will be funded, especially for rare diseases like Neuroblastoma. It is not too late to do something about this. Go to the Curesearch
website and read about how these cuts will affect us. They also have links to the video by Dr. Reaman. While no one will be pulled off current studies, those of us facing relapse will have our future options limited for us by budget cuts. Please ignore their claims that pediatric cancer is 78 percent cureable. That average is skewed by the more common and cureable cancers, like leukemia and lymphoma. For the rare ones like neuroblastoma, it the five year event free survival rate (they don't even bother talking about cures) is between 20 percent and 55 percent depending on certain factors. I have not been willing to talk about percetages before, but I will now if it will get even one person reading this to write to their representatives and demand that these cuts not go through. The truth is, for relapsed neuroblastoma, the cure rate is 0 percent. The best we can hope for is a that whatever clinical trial we go on, will hold off the disease until the next one comes. Maybe that next one will be the cure we have all been hoping and praying for, but not these kinds of budget cuts continue. Private organizations do raise some money for research, but it doesn't come close to covering the costs. Most research is funded by our government. Drug companies are not willing to put any money into pediatric cancer research, because there just isn't a big enough profit. So it is up to our government. While I understand that the war and national security concerns have eaten up a lot of our tax dollars, I also know that they can choose to make cuts from somewhere else. Cut something that affects adults or older people who have had a chance to live their lives! But because they are not as much of a voting power as a senior citizen, the money simply does not go for them. So as parents, we have to let congress know that we are speaking up for our children and for children everywhere.

So, go to Curesearch, click on "Write to Congress" (under "Take Action Now"), type in your zip code and send off some letters. They will help you find who your representatives are, and even have some basic letter templates for you to follow and customize a you wish. The total process took me less than 5 minutes to write to my senators and representative, and I included a lot of personalization. It won't take but a couple of minutes of your time to send a basic form letter, and it will let your government know where you stand.

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Monday, February 26, 2007 8:47 AM CST

Things are about the same here. Kendall was eating a bit better, until Saturday. For some reason he was in a lot of pain on Saturday (note that this was the one day I went to work this week!). It could have been constipation again as I had stopped the miralax on Friday because he didn't seem to need it anymore. On Sunday he seemed a lot better. He was still getting the occasional dose of Tylenol with codeine, but it worked better for him. He is a bit tired again, but not distressed. Of all things he got in the mood for some birthday cake yesterday, and being the overly indulgent parents we are, I went out to Benkert's and got one! We celebrated the "birthday" of Zachary's newest Webkinz pet, Yoshi (a little basset puppy). Yoshi joined Pola (Kendall's polar bear... thank you Alicia!) for a little party, complete with candles. The fact that Kendall didn't finish even one slice of cake is not important here. It got him started eating and asking for food again.

The photo at the top was taken the other day. My boys got a wonderful package from a good friend (thank you so much Kim... they loved it!). One of the toys were these balloon rockets. They have a pump and they make a lot of noise when they fly across the room. The balloons come tied together in kind of an octopus, and Kendall thought it made a great hat! I had to snap a picture. As you can see, he is having fun even though we can't get out of the house much with his counts being so low. Today there is a little snow, and I will see if the boys want to play in it for a few minutes before taking him to clinic for counts. Tomorrow Kendall is scheduled for an echocardiogram, then to clinic for an exam (and probably some platelets at least). Then on Wednesday he will be admitted to Stonybrook for chemo. It will run 4 days, with a day off on Sunday, then he will get his stem cells back on Monday, March 5. This is his last bag of cells. Hopefully Zachary will prove to be a match if he needs any more.


I have an urgent prayer request for a sweet little boy named Ryan.
He had the MIBG treatment around the time Kendall did, and it didn't work for him either. He has a tumor that is now pressing on the brain, and after a nasty seizure he is now on a ventilator in the PICU. He is just a baby (I think about 18months old), and this is just heart wrenching. Also, don't forget our brave warrior princess Penelope . She still struggles on, and has just received her last stem cells back too. Today I also include Katie. Her "easy" chemo stopped working, and she is moving onto another protocol. I hope this one will be the one for her. I wanted to share some good news about an amazing young man named Erik. He beat NB many years ago, only to relapse 13 years later, then again a year later. He went into his last protocol with his bone marrow packed with disease.... and it is now GONE! He credits the power of prayer, and I do not doubt him for one second. His story is amazing and inspirational. The chemos he was on usually only hold things stable or show minor improvement. Something stronger was at work here.

Some of you may have heard Dr. Greg Reaman on ABC news talk about the impending budget cuts to cancer research, and specifically to pediatric cancers. The only reason Kendall is even still here today, is because of the clinical trials. Further budget cuts will mean that less of these trials will be funded, especially for rare diseases like Neuroblastoma. It is not too late to do something about this. Go to the Curesearch
website and read about how these cuts will affect us. They also have links to the video by Dr. Reaman. While no one will be pulled off current studies, those of us facing relapse will have our future options limited for us by budget cuts. Please ignore their claims that pediatric cancer is 78 percent cureable. That average is skewed by the more common and cureable cancers, like leukemia and lymphoma. For the rare ones like neuroblastoma, it the five year event free survival rate (they don't even bother talking about cures) is between 20 percent and 55 percent depending on certain factors. I have not been willing to talk about percetages before, but I will now if it will get even one person reading this to write to their representatives and demand that these cuts not go through. The truth is, for relapsed neuroblastoma, the cure rate is 0 percent. The best we can hope for is a that whatever clinical trial we go on, will hold off the disease until the next one comes. Maybe that next one will be the cure we have all been hoping and praying for, but not these kinds of budget cuts continue. Private organizations do raise some money for research, but it doesn't come close to covering the costs. Most research is funded by our government. Drug companies are not willing to put any money into pediatric cancer research, because there just isn't a big enough profit. So it is up to our government. While I understand that the war and national security concerns have eaten up a lot of our tax dollars, I also know that they can choose to make cuts from somewhere else. Cut something that affects adults or older people who have had a chance to live their lives! But because they are not as much of a voting power as a senior citizen, the money simply does not go for them. So as parents, we have to let congress know that we are speaking up for our children and for children everywhere.

So, go to Curesearch, click on "Write to Congress" (under "Take Action Now"), type in your zip code and send off some letters. They will help you find who your representatives are, and even have some basic letter templates for you to follow and customize a you wish. The total process took me less than 5 minutes to write to my senators and representative, and I included a lot of personalization. It won't take but a couple of minutes of your time to send a basic form letter, and it will let your government know where you stand.

Ok. I'm off the soap box for now. But don't be surprised if I revisit this issue fairly often. It is one of the things that really gets to me.

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Thursday, February 22, 2007 12:11 PM CST

Just a quick update (I'll leave my last post up for now). Dr. Kushner gave some good advice and we decided to do some high dose chemo (doxorubicin, cyclophosphamide, and vincristine) then give him back his stem cells. After 10 days of GCSF shots, Kendall's white count continues to drop. He still needs platelets and red cells once or twice a week (got both yesterday). So stem cell rescue is the only option right now. We cannot do much else until his counts return. Dr. Prakash has already started the ball rolling, and is contacting the transplant team to see when we can start the chemo. It has to be coordinated with them. He will also need an echocardiogram and creatinine clearance (24 hour urine collection is all that is required for this). These are already in the works. They are waiting for the scans to be reviewed by their radiation therapist, and then we will be setting up for that as well (it will be done concurrently with the chemo and should not affect it.). If all goes well, he won't be in the hospital very long, and hopefully this will turn the disease back around again. The plan after that is to evaluate for possible surgery, then hopefully to go back to lower dose treatments and antibody/vaccine therapies. We will know in a couple of weeks if Supersib Zachary is an identical twin, and therefore an exact match for stem cells for Kendall. This may open up more options in the future if that is the case.

Kendall is actually feeling pretty good, eating a lot better, and only in mild abdominal discomfort. We use Tylenol and sometimes Tylenol with codeine to control the pain. He is playing and have fun, though we cannot really be around other kids with his counts. I'm going to try a quick trip to the park today, just for a nice walk through the zoo before the weather gets bad again.


*************************************
Tuesday, February 20, 2007 2:11 AM CST
The boys had a great time at Memorial Sloan-Kettering (MSK). It is a beautiful hospital, and they have a world-class playroom. As luck would have it, today was "Super Sibling" day! So they had pizza and ice cream and games for to honor the loving and patient siblings of these kids with cancer. Of course, my boys had none of this once they found the PS2's with Lego Starwars 2! They fit right in with the other kids and took their turns playing this addicting game.

Speaking of SuperSibs, Zachary really proved today just how brave and good a brother he is. First of all, after the exam, he went with Kendall and a volunteer to the playroom so I could speak with the doctor. As they were walking, he took Kendall's hand to help support him so he wouldn't fall. He made sure Kendall got his turns at the games and stood so Kendall could sit (I brought over more chairs when I went to check on them). Then, he did the bravest thing of all. Dr. Kushner decided to test Zachary to see if he would be an identical match for stem cells for Kendall (finally, after all these years!). They needed two vials of blood from him. When I told him, he willingly came, he sat very still with his arm out as directed. He calmly told them it hurts, but without whining or crying at all! It wasn't even an easy blood draw. His vein collapsed over the needle and they had to keep wiggling it around for almost two minutes to get the blood. He occasionally stiffened or drew a breath, but didn't complain or cry or move even once! He was very proud that he was giving some blood to help Kendall. I can't even tell you how proud of him I am.

Kendall had a harder time because I didn't expect them to want to draw blood, and they wanted a lot (like about 8 or 10 tubes!). Dr. Kushner has some tests he'd like done. So we ended up using his port, but I had no EMLA (numbing cream) with me. So we decided to do the quick freeze spray method. Well, Kendall did NOT like this one bit. Luckily the whole process was very fast. He was fine afterwards and went back to playing. I usually have the cream with me, but I put it on him before we went to Stonybrook for his usual blood draws early in the morning and left it on the table. I'll make sure to have it with me next time. Still, he was remarkably cooperative, and went back to playing with the other kids afterwards. He even kept his little mask on in the playroom, as he is still pretty neutropenic.

Here is a basic rundown of what Dr. Kusnher discussed with me: Kendall's counts are still pretty suppressed from the MIBG treatment. Even after a week of GCSF shots (I HATE those shots!) he still only has an ANC of 390 (up from 130 last week) and still only has a WBC count of 1.0. He still needs platelets once or twice a week too. This will disqualify him from most studies, and makes surgery impossible. So the plan is to give him back his stem cells. But before we do that, he would like to get in another whopping dose of chemo in order to get the most efficient use of those cells. He will do three different agents in high doses. Kendall has seen these before, but one of them not for a long time. At the same time, he will use external radiation to help shrink things a bit more. Kendall will get his cells back, and once he engrafts (about 10 days or so) we will evaluate for surgery to remove the residual tumor. If all goes well, he will then be given another dose of chemo to lower the immune response and we will try one of the antibody treatments at that point. Of course, there are a lot of variables in this plan. Also, Dr. Kushner wants to talk his rather complicated case over with his team, and with the doctors at StonyBrook and CHOP. We may do the chemo and radiation locally at Stonybrook under his direction to make things easier and faster. Of course, Kendall and Zachary can't wait to get back to MSK again! We actually ended up staying in the play room until they were almost ready to close at 4:30pm! Kendall's appointment was 11:30a.m., but I didn't realize you need to leave 40 minutes to park in their garage and I wasn't willing to walk outside in the cold with the boys.... so we ended up getting there at 12:20 and waiting until about 1:30pm to be seen. They were very nice about this and the doctor still took his time to answer all my questions and explain all our options. Anyway, he is supposed to call me tomorrow to let me know where and when we will start treatment.

Kendall was pretty uncomfortable again today, but most of that was due to constipation. He felt much better later on after a BM. He was running and playing with Neil and Zachary, and is in good spirits in general. He has lost some more weight, so they started him on Megace to help improve his appetite. I will pick up the prescription tomorrow. Hopefully it will help. He is still getting the miralax, and it is just now starting to work, but it will take a couple of days to clear completely.

Thank you to all who check up on us. Please keep Penelope London in your prayers. That little warrior princess is still breaking hearts and fighting fiercely. She is such an amazing little girl.

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Friday, February 16, 2007 2:15 PM CST

We are home, safe and sound. I ended up staying the night at the Philadelphia Ronald McDonald house on Wednesday, because the weather was too bad to drive back. I was sorry to spend yet another Valentine's day away from my sweetheart, but it was OK because Kendall had a great time. I have some new photos (see top of page) too. I also included one of Kendall on the MIBG machine. Many have asked about it. There are some others on his main photobucket website (see link above).

Unfortunately, we didn't get the response from the MIBG we had hoped for. As his counts are still low and he is still transfusion dependent for platelets, we are going to try another treatment before giving back his stem cells. One possibility is another method of delivering the MIBG to the tumor using a special antibody that was designed at Sloan Kettering. Therefore, the scans and reports have been forwarded, and we have an appointment for Monday. Dr. Maris feels that this may be a good option. I also will be contacting a doctor in Vermont about some treatments they have. We also may do some local radiation for now, to help keep things in check while we wait for his counts to recover.

Whatever virus got my kids down is long gone and they had a great day today. The new clinic at StonyBrook is awesome, and the boys had a good time tossing rings onto an inflatable pirate ship! I have some cute photos of them in their pirate hats on my cell phone, but I didn't get a chance to upload them yet. After that, we went to the Morgan Center where they had a combination Valentine's Day/Annie's birthday party! Their party on Wednesday was cancelled due to the horrible weather. On the bright side, this meant that Kendall could go too! The kids had a great time, and Kendall particularly enjoyed the cake! He still gets a little tired, and has periods of some discomfort, but it doesn't seem to be too bad at this point. Again, if we have to wait too long for another treatment, we may do some local radiation to help him feel better in the meantime. But he really is having a great time. He played for several hours yesterday with his friend Jessica, and he is now playing with Zachary in the living room and having fun in general.

Thank you for all your concern. Sorry it took so long to get an update. I'll update on Monday after we talk with the team at MSK.

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Sunday, February 11, 2007 4:31 PM CST

Quick update, because I have to get back to Kendall:

We had a fantastic time on Friday at a private screening of Happy Feet compliments of Morgan, the namesake of The Morgan Center! She raised over $1200 selling bracelets at her school and other functions to take the kids out for a treat. They got popcorn, candy, soda, and her dad, "Mr. Nancy" (heeehhee sorry Rod I couldn't help it!), won little squishy balls for them in one of those grabbing machines. My boys got to sit next to Morgan's brother Trevor, and were quite honored (they really look up to him). He's a good boy and tried to help me when they got distracted, which was often. But they did watch the whole thing and really seemed to enjoy it. Kendall was very tired though. His counts from that morning showed he had a HBG of 7.5 (red cells.... normal is around 12) and platelets were holding fast at 36k (normal is 150k or so). His ANC (measure of immunity) was 650, just slightly above neutropenic. So we decided to stay in for the weekend.

So much for my plans. After the movie on Friday, Zachary woke up from a nap coughing and feeling crummy. The vomiting started a couple of hours later, then came the fever. Kendall's fever started on Saturday morning, and by the evening it had hit 104 and he was showing signs of dehydration from the vomiting and diarrhea, so off to Urgent Care I went. The took about 5 minutes to decide to admit him. By the time we got him there last night, his ANC was 350 (fully neutropenic.... a dangerous state of lowered immunity), his HBG was 6 and his platelets were 12k. He got both overnight so that he could sleep through them. He actually woke up pretty cheerful and feeling a lot better, with the exception of the diarrhea thing. He ate a bit today - applesauce, pudding and macaroni and cheese - and was more comfortable and playful. The fever was still there, but lower. No signs of pain. After talking with the local oncologists and the oncology fellow from CHOP, it was decided it wasn't safe for me to take him and drive him to Philly. He is coughing too now, so he will not likely clear anesthesiology for a routine procedure like a bone marrow aspirate. So we will stay overnight, and the oncology attendings at CHOP will be contacted first thing in the morning. They will decide at that point whether to reschedule the scans, to have Kendall transported to CHOP, or to discharge him and let me drive him down.

I'll try to update tomorrow. I have to pack and get back there now. Poor Zachary is still not feeling great either (obvious stomach virus).

Keep our brave friends in your prayers:

Penelope (still bravely fighting, though it is getting tough), Carter, Nathan , James
Spencer, Brandon L., Hannah S., Erik L. (say an extra prayer for the recent loss of his grandfather to cancer), Gage, Ashley V., All the kids at The Morgan Center, Sam H., and Austin M.

Prayers of thanksgiving for two brave fighters who got good news recently, Emily A. and Brandon K.!

Don't forget our friends in Transplant, Tanner (he's getting out soon) and Russell (still hanging in there, but its a struggle... hopefully I'll see his mom this week and give her a big hug).

My list is getting too long. I'm going to have to cut it down somehow. It is not even the tip of the iceberg when it comes to the number of families I know who are devastated by this disease. To do something for the whole bunch, head on over to Lunch for Life and pick a family. Donate a lunch and make a difference.

Lots of love to all those who continue to pray for us.

Aimee

(Ok. I know that wasn't exactly quick. But I did leave out a lot of the links and that saves some time!)

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Monday, February 5, 2007 11:08 PM CST

Kendall gave us a real scare this morning. I had my mom take him for a blood draw for counts (at the new clinic, she said it is gorgeous!). I figured on bringing him back on Tuesday morning for whatever transfusions he would need. But they called me at work and said his platelets were 4,000! To put this in perspective, I had just given platelets on Saturday, and my count was 326,000! (enough to give 3 units worth). We were very lucky he didn't bleed anywhere. They transfuse automatically when the platelets fall below 10k, and if they fall below 15k and he has any signs like bleeding or large bruises. Anyway, we were lucky and none of this happened. Thankfully, I didn't know about these counts when I took him to Kathy's last night to play with their little red-headed friend Jessica. After a dose of Tylenol, Kendall was running all over, riding her scooter in the house, and bouncing on her hippity hop, among other dangerous activities. But no harm was done and it really lifted his spirits (and mine too!). We've been kind of cooped up the last few days between clinic appointments, low counts and feeling crummy.

Kendall has been very much up and down with the pain. It seemed to be getting better, but comes back again. He had more intense belly pain on Friday, and Dr. Prakash felt he could be constipated. It seems he was because it took a few days of Miralax before he was able to go (today!). He seemed to feel a bit better after that. He still goes through periods of feeling unwell, but they seem to pass. It is hard to say where it is coming from. We saw the Urologist on Friday too, and he felt that the opening where the urine comes out was way to small, and may be causing some of his bladder problems. He really didn't take my list of problems all that seriously at first, saying that he didn't want to do extensive testing on a kid with such "complicated medical history), but would be willing to try a prescrition for bladder spasms. Then he examined Kendall and one look and he said "Oh, that could be a problem". He didn't even need to measure he said, it was obvious that there had been a lot of scaring and a very small opening. He suggested a minor surgical procedure, and we will see when we can fit that in. At least we have a possible benign cause of some of the problems. But I don't think they are the entire problem. That plus the constipation..... maybe.

Anyway, its late and I'm off to bed. Please keep beautiful princess warrior Penelope in your prayers (will put links in later). She is suffering a lot now and has really gone down hill.

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Monday, January 29, 2007 10:36 PM CST

Kendall is feeling a bit better today, and so am I. Today I took Kendall for platelets and another infusion of antibiotics. I see improvement in him, because he went all night without further need of Tylenol (from 10pm to 10am) and without further fever (it got up to 99.9, but not higher. He got Tylenol as part of his premeds for the platelets, and he slept much of the afternoon. But he was a lot more comfortable and happy this morning. He isn't eating a lot, but he drank a good amount of my high-calorie shake (made with milk, heavy cream and lots of Quick!). After the platelets, he slept off the Benedryl, then went to my mom's so I could work for half a day. He ate an apple and drank a couple of Danimals, but spent the day quiet on the couch watching TV. He was a little uncomfortable, but not screaming in pain. He refused to take any pain killers, but I gave him Tylenol when I got home. His temperature was mildly elevated to 100.4. Once the Tylenol kicked in, he drank a good deal of a White Castle shake, and ate several chicken rings and onion rings (UCK!!!! but lots of calories). He was playing and cheerful the rest of the night (11:30pm and he is currently running around with his socker-boppers on his hands and home depot goggles on his eyes saying he is a Scout Trooper). The last time I made him go to the bathroom before bed, he was still hunching over uncomfortably, but had no problem going and he said it didn't hurt.

So he still has mild pain, but it is better. Some of the improvement could be due to the hydration, but I think the fevers are better because of the antibiotics. I looked at his blood counts, from Friday 1/26 and Sunday 1/28, and his WBC's shot up from 2.4 to 7.3 in just two days. He has NOT received any sort of stimulating shot or medication that would explain this, so he must be fighting something off. I'll find out tomorrow if anything grew in the cultures. The UA only showed some blood, a trace of ketones, and there was one white blood cell, and urobilinogen. He was also pretty dehydrated. Anyway, I am hoping for a nice easy urinary tract infection. If that is the case Kendall should continue to improve and be better in a couple of days. I'll keep everyone posted.

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Sunday, January 28, 2007 9:42 AM CST

We've had another up and down week. I am getting annoyed of the constant rollercoaster-like activity! Kendall felt great all week. The photos taken above were from Thursday night when the boys decided to drag out all their old costumes and put them on. I asked them to pose for a photo and this is what I got! They were having a blast. Kendall's counts dropped on Monday (1/22) and he needed platelets and blood, but by Friday they were back up. Even his white cell count had recovered a bit. Both boys went to the Morgan Center, and Kendall had a great time on Friday. He was playing, laughing, running, eating. He was proud he had gained weight.

Then on the way back to the clinic to have him de-accessed (we left him accessed in the morning in case he needed blood or platelets), he started to complain of pain in the belly and the heat. I thought it was because I had him strapped in the carseat with his heavy winter coat on (too cold to take it off!). When we got out of the car he still seemed OK, and even ate a great lunch, but then started holding his bladder area again. He has been in some pain and discomfort all weekend, lying around when the Tylenol wears off, and not eating well at all. He threw up yesterday, but I attributed that to a dose of Tylenol with codeine (I switched back to regular Tylenol after that). Then last night, 2am, the fever started. It was still there this morning, so needless to say poor Kendall has to miss his fun day at Sunrise DayCamp and will instead be back at StonyBrook Urgent Care for counts and cultures. I sent Zachary to camp with Neil, and Kendall is cheerfully playing with some Playdoh while we wait for Urgent Care to open at 12. He feels better with some Tylenol, but he vomited again this morning. He ate a bit after that though. I'm just so frustrated and depressed. I HATE for him to miss so much fun stuff. Last time I had to take him out early from the Sunrise Day because he had to get to Philly on time. I don't know if the problem is that the treatment isn't working, or if it is working slow, or if his symptoms are not really related to that. I'm reluctant to move the scans up because you need at least 6 weeks to really assess the treatment. We'll see. If he gets any worse or doesn't improve we will have to do something. It is very hard not to get discouraged.


Sorry I don't have better news. Actually, I'm not even sorry. It is what it is. I'm tired of being cheerful and positive. I'm tired of pretending Kendall isn't sick or he is going to just get better and be done with all this. There is almost no chance of that. I know his chances of ever living a full and normal life are almost none. Mostly I just try to make what time we have count and make the best of whatever situation we are in.

But somedays it is hard.

Quick prayer list. All these children have families like mine riding that same emotional rollercoaster and getting sick and tired of it too: Gage B., Erik L., Penelope, Nathan , Spencer , Austin, Carter, Katie , and Ryan , Hannah from France, Tanner and Russell.

I am devastated to have to add another, "Flying" Bryan Tressler. This Green-haired snowboarder has been an inspiration to us all, and has been battling NB nonstop for many years. His current treatment is failing and his options are limited. I got to meet Bryan and his mom a couple of times at CHOP. They are a great family and my heart is just aching for them.

Maybe next week I'll post a few good news stories.

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Wednesday, January 24, 2007 2:36 AM CST

Kendall is feeling a lot better and pretty much back to his usual, fun-loving, active self. He doesn't seem to have any pain, and I'm more and more convinced the pain was from whatever virus afflicted him. It could also have been changes in the tumor as it hopefully is shrinking away. Kendall has been absolutely full of energy, and eating very well. I've had a little bit of luck with some of the protein bars for extra calories. I'm trying different things to see what he will take. But he is gaining weight and looks pretty good all in all.

So his counts finally got low enough to require transfusions on Monday. Kendall received the MIBG therapy on 12/27/06. His counts all remained high until 1/15/07, when the platelets began to drop. They went down pretty quickly, and the red cells followed over the next few days, slowly declining. However, the white count remained very high, and on Thursday the 18th was still 7.1 with an ANC of over 6900. This was obviously in response to an infection of some sorts (virus?). On Monday, 1/22/07, his HBG was down to 7.9, low enough to require transfusion of packed red cells. The platelets were 12,000, more than low enough to require transfusion, and his white count took a nosedive to 1.4, with an ANC of 900. He is now borderline neutropenic and will get a Neulasta shot if it goes lower (likely). We will be taking care to keep him away from possible sources of infections at this point (i.e., sick people, crowded places, areas where children congregate), so if we turn down invitations to your house or to come out with you, please understand. For now I will continue to let him go to the Morgan Center, because they are pretty careful about germ control. If he gets a fever, we will be hospitalized until it is gone and his counts recover. This is not desirable. The Neulasta shot is similar to the Neupogen shots (GCSF) that Kendall used to get. Now, when possible, we use the Neulasta because it is just one shot that lasts two weeks, instead of daily shots for 7-14 days. He had a good response to it last time, and we expect a good one this time. He will probably need this on Friday.

Sorry for the boring details, but I want to try to keep track of the progress of his treatment, and this journal is the easiest way for me. I plan on putting together a help file for those undergoing MIBG treatment. It absolutely made me terrified when Kendall's counts hadn't dropped within the first couple of weeks, but actually went up at first. And his slow but steady physical response to the drug wasn't what I expected either. The medical staff was pretty vague about these things, and just said that every child is different and these are not unusual findings. I just wanted to put together a more specific guideline.

In any case, I wanted to add requests for prayers for Gage B. and Erik L. Both are starting new treatments now. Gage is an adorable 5 year old like Kendall who has had refractory (unresponsive) disease for over two years. Erik is 22, and he relapsed after 13 years of being NED. He is also adorable, but in a different way! I don't want to post a link to Erik's page without permission, and Gage's page requires a password.

And of course we still pray for: Penelope, Nathan , Spencer , Austin, Carter, Katie , and Ryan . And also for Hannah from France.

Both of our friends in transplant are doing pretty well so far, but it is a difficult time for them and for their families as they wait for the cells to engraft. The children are very vulnerable during this time, and for the first few months after transplant: Tanner and Russell.

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Saturday, January 20, 2007 5:52 PM CST

Kendall is feeling a lot better today. No fevers, and he says the pain is gone. He still isn't exactly running around, but he is cheerful and relatively active, and enjoyed a day around the house with Daddy (it was my Saturday to work). I had taken him yesterday morning to clinic, as his fever was still pretty high, but it went away with Tylenol and never really came back. For that fact, he went swimming later in the day yesterday! He is still being a bit picky about food, but he is eating OK and drinking well. Hopefully we can increase the calories to the point where he will actually gain a few pounds.


Please pray for our fellow NB warriors:

Penelope, Nathan , Spencer , Austin, Carter, Katie , and Ryan . And also for Hannah Schneider, an adorable NB warrior princess from France. She just finished her first MIBG treatment this week as well. Hopefully she will have a great response to it. I do not currently have a website address for her.

Also, our friends in transplant for other cancers: Tanner and Russell.

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Friday, January 19, 2007 6:00 AM CST

Kendall has been fighting fevers all week. I was hoping to have better news by now. It started on Tuesday night, and after three days of outpatient ceftriaxone, they de-accessed him yesterday with somewhat lower fevers (they had been around 100.9-101.9). So last night they shot up to 104.4. Tylenol brings it down and he actually ate a good late dinner, then was playing with Neil and Zachary enthusiastically. This morning his temperature is 102.7, so I'll be taking him to clinic when they open. I will have a bag ready in the car in case they keep us for a few days, but hopefully they will send us home with a promise to watch him closely.

His counts have coincidentally started to really drop. Platelets were 300k about 10 days ago, yesterday were 30k. He will probably need a transfusion soon. His HBG (red blood cell measure) is 9.4 yesterday and slowly dropping. His WBC count is 7.1 and his ANC is over 5000. This has been increasing all week. These are measures of his immune system and show him to be fighting something off. It is good that he isn't neutropenic as that would mean definite hospitalization until it resolves.

Kendall's only other complaint is a vague stomach pain, which seems pretty mild. At first I was worried because he said it was his bladder that hurt. This has previously been a sign of disease progression for him. But after two days, he still isn't holding his bladder and laying on his side like he did before, or showing any of the other signs of progression that he showed previously. He now says it hurts all over, but it seems mostly to be abdominal pain. He only complains of pain when we ask about it. He only looks uncomfortable when the fever is high. Even at a temp of over 104 last night, he was sitting up and watching TV. After Tylenol he took a long and playful bath with Zachary in Nonni's big Jacuzzi tub, and later he was jumping on my bed and running around playfully.

I talked it over with the nurse practitioner at CHOP, and she said the pain could be due to effects on the tumor from treatment. As they shrink and die there is sometimes pain and discomfort. If it gets worse or if he shows other signs of distress we will scan sooner. I was thinking this could be causing his fevers too, or they could be just a virus like they say. Previous tumor-related fevers were generally low-grade and tended to come and go. Not a consistent high-grade spiking temp like this.

Don't forget our fellow NB warriors:

Penelope, Nathan , Spencer , Austin, Carter, Katie , and Ryan .

Also, our friends in transplant for other cancers: Tanner and Russell.

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Monday, January 15, 2007 7:32 PM CST

Kendall still feels great and his counts are holding up well. Wednesday will be three weeks since his MIBG injection. His WBC count has actually gone up, and he currently has an ANC of about 4700! This is the measure of his ability to fight infection, and is considered excellent for a kid in active treatment. His HBG is still around 10.8, a slight increase from Friday. The only thing dropping are the platelets. He started out with about 300K. He's down to 86K now. The don't get too concerned until it drops below 20K. Then we have to start looking at transfusing. I'm scheduled for a platelet donation on Thursday. Hopefully I will get the chance to go this time. There is a pretty good chance the platelets won't be used by Kendall, but they are ALWAYS needed by someone. I urge anyone healthy enough to take the time to donate blood or platelets (the platelet donations take longer, but are so important to so many people).

The weather has been crummy lately, but we went swimming at my mom's yesterday, and Kendall swam around for a good hour and a half. For that fact, I was the first one that wanted to come out of the pool! He's been active and eating well, but still not gaining any weight. I'm debating on using Megace as an appetite stimulant. I've been reluctant to do this, but don't really have a good reason why not. I suppose it is just that I don't like adding more drugs into the mix.

We had a nice visit from Neil's family, including finally meeting our newest cousin De'Janay! The boys were quite taken with the little cutie, and can't wait to go to Florida to visit them (of course, while we are there, they are hoping for a side trip to Disney!).

Please keep beautiful Penelope in your prayers. They are trying a very unproven therapy in the hopes of a miracle. We hope and pray for one with them.

Nathan , Spencer , Austin, and Carter, are all facing tough choices and trying new treatments.

Katie and Ryan are doing pretty well right now. (Praises!) Ryan has finally achieved NED status after antibody treatment, and Katie is stable on her therapy, and enjoying school and friends. Just thought I'd throw some good news in too, before everyone gets too bummed out!

Also, Tanner is getting ready for transplant using donated marrow. This little tough guy battled through neuroblastoma, and now has come down with a secondary leukemia, AML, due to treatment. He's only 3-years-old.

Lastly, but not leastly, please keep up the prayers for the wonderful Lee family who we met at the Morgan Center. Russell is going through transplant at CHOP for relapsed leukemia. He just received his brother Brandon's cells. At two years old Brandon is already a hero! His mom and dad, Peggy and Joe, have a long and hard road ahead, but they are hopeful for a cure.

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Wednesday, January 10, 2007

QUICK UPDATE: Kendall still feels great and is eating well. The pink eye has cleared and it looks like the MIBG treatment is agreeing with him so far. I will take him for counts tomorrow, but so far his counts haven't dropped and he hasn't needed any blood or platelets yet.

On a sad note, Penelope London has taken a turn for the worst. This is a brave and beautiful little four-year old with wonderful and loving parents who have been fierce advocates for their little girl. My heart just breaks for yet another family devastated by this disease.

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Sunday, January 7, 2007 11:55 PM CST

The very top photo is of my brother Nick caring Kendall on Halloween. Those of you staying at the Philadelphia Ronald McDonald house in January may see him around there. He is volunteering a couple of days a month at the house. His company has allowed him to commit to this for a year! Give him a big hug for me. He's a great brother and father.

On to Kendall... he is doing better each day... well sort of. His appetite is starting to return and he's gaining weight again. The pains seem to be gone, and his silly, cute, and fiesty personallity is back. He is full of energy, but tires quickly and seems to need some extra nap time and sleep. Overall he seems much improved though. But yesterday I began to notice his eyes were a little red. So were Zachary's. Then he woke this morning with them glued shut. A visit for both of the boys to Urgent Care confirmed a probable early case of Pink Eye. Unfortunately, that means no Morgan Center for a few days, but the drops seem to be working quickly and they are definitely rubbing less and blinking less.

The boys manged to make it through their Epiphany play for the church on Saturday (though they probably exposed a whole bunch of people to pink eye!). The boys were very cute cows, but between stage fright and exhaustion (they were too excited to nap), they were very quiet with their lines and only Zachary sang the songs (only about half of them). But the play was very cute and the other kids helped. The boys had a great time, then promptly fell fast asleep on Neil within 5 minutes of the end. Neil took them home, and me, Mom and Fritz stayed for the end of the service. The boys did wake up when I got home, and Kendall ate a whole pint of chicken noodle soup (with tons of noodles), followed that by some cheesecake with whipped cream and a pudding cup! (with more whipped cream). The boys stayed up very late, but seem to be back on track tonight. Thank you for checking up on us.

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Saturday, December 30, 2006 0:23 AM CST

UPDATE: Saturday night - 10:30PM:

WE'RE HOME! It was a long ride with lots of traffic, there was waiting for the understaffed pharmacy to fill a prescription for 2 drops of SSKI and about a tablespoon of potassium perchlorate (took them about 2 hours for this!), some other minor annoyances soon forgotten, but we made it home! Kendall feels better already. HE still has some lingering fever and minor abdominal discomfort, but nothing a little Tylenol can't handle. I'm not taking him to the hospital tonight unless his fever really shoots through the roof. He will need twice weekly blood draws and will be back at CHOP in six weeks for scans and possibly another round of MIBG. For now, it is good enough to be home. I'll decide tomorrow what we are doing for New Year's Eve.

********************************

Just a quick update as I'm kind of tired. Kendall still had fevers today, though they seem to be lessening as of midnight. They removed his Foley catheter, much to his relief! It was pretty painful afterwards, so they gave him some pain meds and a type of urinary anesthetic. He was much more comfortable after that. He walked all the way up the hall to the Nuclear Med department and back, with me following with a wheelchair... just in case. The scan was fast and I got some cute photos on my phone, but will upload them tomorrow or when I get home maybe. I don't have the results of this scan yet, but even I could see the very bright spot in the midabdominal area. This would be good as they want the drug to concentate heavily in the tumor region and kill it. Kendall did have some mild abdominal discomfort today, but when the fever stayed down he was very much his old cheerful and playful self. Our Playstation broke sometime on Wednesday night, so I kept him entertained with games, playdoh (thanks to ChildLife) and some cool paper airplanes (thanks Alicia!). He really was quite cheeful most of the day, took a very long nap, then was up until about 1AM. He even ate a little bit. Luckily I have learned to live on limited sleep, occaisional catnaps, and coffee.

I had a wonderful visit from Liz Scott of Alex's Lemonade Stand. She brought Pizza and a nice salad, along with some toys for Kendall (he DID love that Whoopie Cushion and can't wait to spray the silly string!) and other things. It was nice having someone else to talk to for a bit, especially as Kendall slept for a good portion of the day. I had Neil stay home with Zachary again, because we are hopeful to be released tomorow. Kendall's radiation levels are low enough, and they even took the sheilds out of the room. It is just the fever keeping us here. Besides, their good friend Jessica has her fourth birthday party tomorrow, and I just felt like it would be wrong not to at least send Zachary.

Kendall will have to limit contact with other children and pregnat women until Wednesday, so our New Years plans are up in the air. Hopefully we will be home by then!

Thank you all for checking in on us.

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Wednesday, December 27, 2006 11:30pm

After a long ride full of traffic, we arrived safely, though late, at CHOP last night and were admitted to 3south. Kendall's room is covered in plastic, including the floor, bed (with sheets on top), phone, controllers for game and tv, even the toilet bowl has a thick sheet of plastic and pads. He was a little disconcerted at first, but soon discovered the fun of sock skating on plastic! Today he had his catheter placed under anesthesia this morning, and he did have a bit of a fever going in. His breathing got a little crummy, and they suspected an upper respiratory infection or something, so he was given some albuteral to help him breath. He's been fine since, and some antibiotics seem to have the fever under control. He got his injection of MIBG, and we are now on radiation precautions until it clears.... probably Saturday. After that, it will ble another 3-4 days until he can be around young children or pregnant women, but he is otherwise able to go home. We will take some precautions with his brother and cousin and they should be fine. Kendall feels fine, though he started to complain of some abdominal pain yesterday, and they gave him some pain meds today. He is pretty comfortable all things considered.

We had a nice visit from a true angel-on-earth named Alicia... a friend of Liz Scott from Alex's Lemonade Stand. Liz wanted to come and visit us this week, as she remembered how isolating the treatment was for her own precious Alex, but she was away. So she sent some volunteers from her organization. Alicia came and brought me some of the best Chinese food I've had in years, and some books and a toy for Kendall. She stayed with him while I ate, though Kendall was alittle grumpy from having just woke up. Thank you again Alicia, and have a very happy and healthy new year. I promise to return the kindness to someone when my own life settles down.

Earlier in the day a very sweet childlife worker came to play with Kendall while I took a shower. So I'm really OK we are getting lots of support. The nurses and doctors here are great, and this is not a hard treatment at all. I'll try to update tomorrow night, but so far we are doing fine.

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Tuesday, December 26, 2006 0:01 AM CST



The highlight(for me) was Zachary's prayer at dinner. My mom suggested we say Grace, something we should do more often! She was just starting when Zachary interrupted her and asked if he could say his "new prayer". We all thought that was cute and figured he'd recite "Now I lay me down to sleep, or maybe the Lord's prayer I grabbed my camera and caught the recording just in time:

Zachary's Prayer

If it asks for a password, it is Warrior.

In case you can't hear it, Zachary said: "I wish ...God is planning to make Kendall feel better, and we are to praise the Lord."

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Friday, December 22, 2006 11:54 PM CST

Kendall probably had more holiday parties this year then anyone else! The party for the Morgan Center children at Southward Ho Country Club was just fantastic! They had a great DJ and all the kids were up dancing. There were balloon animals and great food, and Santa came too! Kendall and Zachary both got some nice Star Wars toys and were just Thrilled! I also got some nice presents! The generosity and kindness of the people at Southward Ho is greatly appreciated.

I wish I had better news about Kendall's scans. With him feeling and looking so good and eating better than ever (see the top photo!), I really expected to hear that there was great improvement, or at least stable disease. However, the abdominal tumor is larger on CT. It is also bigger on the MIBG (nuclear) test, and his bone marrow aspirates that were sent out to the lab came back positive on both sides with a small amount of disease. Therefore, the chemos are just not working well enough. We need to move on to a different type of treatment, so we are going to do the MIBG treatment. The same nucleotide that they use to scan with is given in larger amounts and acts like an internal radiation. Kendall will be radioactive from this treatment for several days and will be kept isolated. Visitors over 18 are OK as long as they are not pregnant and don't stay for more than an hour. I will be allowed to stay with him and take care of him. The housekeeping and dietary staff do not come into these special rooms. The nurses only enter for quick checks and absolutely necessary treatment. They don't want to wait and have scheduled this for next week! We will begin treatment just after Christmas. We expect to be out around New Year's Eve.

While in Philly, we went to the Camden Aquarium just over the bridge. What a great place. I hope to get back there in the spring or summer when the children's garden is open. It sounds fantastic. The boys LOVED the hippos (see above) and they were really cool to watch. The actually are very graceful and almost dance like a ballet in the water. They seemed very interested in us and swam right up to the glass to watch us. We also loved the shark tunnel. It is really cool and there are lots of cool fish to look at too.

After the bad news on Wednesday, we decided to stick around Philly for a party at the Ronald McDonald House. So we went to the Please Touch Museum for a couple of hours. The boys had fun playing with their new friends from Maryland, Jagger and Hunter. The party was truly spectactular. Ronald McDonald is a real acrobat nad he rides his unicycle, juggles (multiple objects!) and performs some great balancing and strenght feats. He is also a great dancer and he danced with the kids all night! The boys just loved all the characters (Kendall was scared of the Hamburgler, but liked the other ones). They had a great buffet, and the boys got new Hess trucks from Santa! It was a long and tiring drive home (I got home after midnight and was up the next morning for work), but it was worth it. The kids had a truly wonderful time.

Please keep the family of the beautiful Laura Stiles in your prayers. She passed away and gained her angel wings earlier today.


Don't forget our other struggling warriors: Nathan
James
Spencer
Nate

Ryan


Russell

Katie

Carter

Penelope

And sadly I have to add to my list adorable little Gage. His website requires a password, so I won't post it, but his parents are devastated by bad news today. Please also remember those whose children will not be with them this holiday season.

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Thursday, December 14, 2006 11:45 PM CST

We got out of the hospital on Saturday a bit too late to go to the play with Mother's Kiss (sorry Geri, hopefully you found someone else to use those tickets!). However, we made it in time for the Make-A-Wish Holiday party at Villa Lombardi's. The place is beautiful and the boys loved the food (pizza, ziti, chicken tenders, meatballs.... very kid-friendly buffet, but nice for the parents too!). There were hundreds of kids there, and they had costumed characters walking around, handing out candy and small prize. The only problem was it was just too loud for my kids. They had a fun DJ, but the music was very loud, and all those people were overwhelming to Kendall and Zachary. We left early, with some nice toys and a bag full of goodies. We are very grateful to the Make-A-Wish organization for all they have done.

I finally checked and got the photos from A Mother's Kiss! I'm going to use them for cards, so I won't post them here yet. But they are beautiful! Great job Robert and Geri! It was another awesome event from the Garafalo's.

Kendall is feeling fantastic right now, although the boys did miss their Holiday party at the Morgan Center. They just weren't quite over their colds. But today they are pretty much gone. Even baby Nicholas is feeling better! The poor dear has Asthmas, so a little cold easily became a nasty bronchitis. He's OK now though.

Today Kendall had his Bone Marrow Aspiration done in the PICU at StonyBrook. I am doing the rest of the scans next week at CHOP, but they couldn't fit the bone marrow in any day other than Monday or Thursday. Thursday meant that Dr. Maris wouldn't even have preliminary results when we went to speak with him, and Monday would have meant missing the Holiday Party at a local country club for the Morgan Center kids. I KNOW they wouldn't want to miss that, so I did what I could to make sure he could go. At least now we have a chance. Kendall is eating very well and generally is in good spirits. We look forward to our return to CHOP.

Much love and many blessings to all. Keep us and our fellow NB warriors in your prayers!

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Sunday, December 10, 2006 0:30 AM CST

Kendall is doing OK and feeling good today. He ended up getting admitted on Thursday night due to fever with neutropenia. Luckily, his counts were already on the rise at the time. His ANC (a measure of his immunity) was 40 on Monday, so he got a Neulasta shot. This is a one-shot white cell booster, instead of the daily shots of Neupogen (GCSF). By Thursday night his ANC was 135. By Friday it was 430, and they released us today (Saturday) with an ANC of 785. The fevers never returned, but they were actually fortunate. Kendall's hemoglobin was down to about 6.6 and his platelets were 9,000 yikes! He was actually out riding his bike and playing most of that day! Amazing. Thank God he didn't fall or hit a branch and get a cut.... he could have easily bleed out! When the platelet count gets bellow 20,000, it gets dangerous (normal is about 150,000 to 250,000). If it wasn't for the fevers, I may have tried to make it through the weekend without repeating the counts. Kendall was feeling so good and he looked just fine. You'd have never guessed he was so anemic!

Kendall was thrilled to be inpatient back at StonyBrook again (I was not quite so thrilled, but it was nice seeing some old friends). He was a little sad he couldn't go to the playroom on Friday, but he kept the Childlife staff on their toes with his requests for movies, toys, games and playdoh. They were very accommodating as usual. Today we were able to get to the playroom, because he was no longer neutropenic. We stayed for quite a while, especially after Zachary joined us. Then some lovely sorority and fraternity students from the college came and gave out toys. Of course, my kids got more than their share! They are now the proud new owners of a great set of Socker Boppers and spent a good hour "boxing" when we got home. Also a nice big 450 piece lego set with dinosaurs. So I'll be stepping on legos everywhere again.... thanks Brad!

Really it is great that my boys are so well treated over at Stonybrook. Kendall's arrival on the floor was almost as if a celebrity came in. We are very blessed by such loving and caring people who try so hard to make us comfortable. Sadly, there is nothing they can do for that chairbed. It was definitely one of the worst, and due to the full house, there were no extras. At least Kendall was comfy! There was also a lot of confusion about their new computer system. Hopefully they will get the hang of it soon!

Thanks for checking up on us!

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Wednesday, December 6, 2006 6:59 PM CST

Well we had a good trip to the city and a nice talk with Dr. Modak. This was just a consult visit, so he didn't actually examine Kendall, but he reviewed his chart and gave his opinion. Basically, he feels we should do the next round of scans, then have a surgical consult with the famous Dr. LaQuaglia. Sloan's surgeon operates on more NB tumors than just about anyone I think, and has unique techniques for those that others consider to be inoperable.

I hate the idea of surgery, but Dr. Modak made some good points. Basically, this tumor has shown resistance to chemo. While it shrunk, it never really disappeared. Now if the new scans show it to be completely gone, then no surgery will be needed, we will continue this for a while and move on to a biological study (antibodies) after a few more rounds. That is not the most likely outcome, but certainly would be a good one! If the new scans show that the tumor is still there, maybe smaller or stable, and there is no other disease seen elsewhere, then he recommends surgery followed by antibody therapy, which Kendall has never had so it would be a new agent for him. If the tumor is there and is determined to be inoperable or if there is a lot of metastatic disease, then he would suggest possible surgery (at least a consult), MIBG treatment (assuming MIBG avid disease), and follow that with one or two rounds of chemo then antibody therapy.

This all sounds so much simpler when the doctors explain it! Basically our next move would be decided after scans, and he recommended we talk it over with Dr. Maris as well. There is no "right" answer here. Dr. Modak's main point was that as time goes on these soft tissue masses become more and more resistant to chemo, and the body becomes more worn down by the chemo. Get rid of the mass, and you have a chance at other agents being able to attack the minimal disease. He said that in most cases once you get rid of the primary tumor, it does not return in that spot again, especially when interoperative radiation is used. It should be noted that this relapsed tumor was not at the same site as his original tumor, but was more centrally located.

I will probably have the scans done at CHOP and sent to MSK due to insurance issues. I need time to find out if my insurance company will cover at least some of the treatment at MSK. I have no intention of letting that dictate what treatment we decide upon, but I'm willing to be flexible on the scans as MSK is also willing to accept those scans.

So I will contact CHOP tomorrow and see if we can set up scans, and will contact the insurance company in the meantime. Thank you to everyone who keep checking in on us. It is Lunch for Life time again, so I'll be sending out an email reminder, but feel free to go to their site and donate in Kendall's name in the meantime. Don't wait for Ms. Procrastination here!

Please keep our fellow NB warriors in your prayers. Beautiful Penelope London is really struggling right now. They are hoping for a miracle with the Hot antibody treatment at MSK. Also, Nathan just finished his third round of antibodies, and is hoping to get home soon. Carter has also been fighting long and hard, and this last round was particularly difficult for him and his mom. Both Laura and Katie are struggling with symptoms and being re-scaned this week. Let's pray that it is anything other than progression. Please also say a prayer for a very brave, high-flying, green-haired warrior named Bryan whose progression was just confirmed.

My list is getting too long. Forget all these links and go to Lunch for Life. These kids need some hope. Research means hope.

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Wednesday, December 6, 2006 0:01 AM CST

Sorry such a long time between updates, but I've been tired and busy.

The day after Thanksgiving, the boys enjoyed playing with their cousins Andrew and Alex at Nonni's house, and having some friends drop over for a visit. It was a nice day, but too short! You can see the boys smiles. On Saturday, we went to the park as the weather was unseasonably warm for late November. Note the full head of hair Kendall is sporting. The very next day it all fell out! He went into the Sports Day at Sunrise day camp with a lot of hair but it was thinning out, and came out with almost none! He is now back to pretty much bald again after another round of chemo. I think he looks adorable with no hair, and it only bothers Kendall a little bit. But I HATE all the unwanted attention we get. I hate strangers who feel the need to come up and talk to him ... usually ignoring Zachary. I especially don't like those who say things like "Oh, the poor baby, he has cancer, but he will be alright though...right?" There just isn't a good answer to these people. They only want to hear "yes". Strangely, I find that kids his age are fairly accepting of the lack of hair. They will say something like "You don't have any hair". Kendall will nod, then the will just run off and start playing. It's the parents who I find annoying.

Overall Kendall feels OK. He had a few crummy days with some extra vomiting and not eating, but mostly he's been OK. He is a bit thin, and he gets tired quickly. But today he ate much better and seemed more like himself.

We are off to Sloan Kettering in the morning. I'll post when we find out what they have to offer.

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Thursday, November 23, 2006 12:14 AM CST

Some of the pictures above are from our trip to Great Adventure in October. I finally got around to picking up the disposable camera shots! (Note, they have changed the way they share photobucket albums. Email me for password and instructions.)

This morning I was up early, before everyone else, and I thought I'd read back over the last two Thanksgiving entries. This is our third Thanksgiving since Kendall was diagnosed. That was such a life-changing event for us, that I think forever more my life will be separated into "pre-cancer" and "post-cancer" events. That first Thanksgiving, Kendall was just finishing his first stem cell transplant. He did amazingly well. I remember I worked that day, and regretted it greatly. I had a lot of things to be thankful for, and I was so grateful for all we had and all people had done for us. It was almost like I learned to be truly appreciative for the first time. But I think I kind of forgot those lessons in the following year. Last year, Kendall was off treatment and doing great. I had a lovely Thanksgiving photo spread of how cute my kids were, and talked about the great party they went to. How soon we forget what is really important. Though at that moment, those things were important to me, as I was feeling very triumphant over Kendall's "conquering" of cancer, and I was thankful that he was able to enjoy these "normal" things to the fullest for the first time.

Now we are back in treatment. And it hasn't all gone well. I am still very thankful that Kendall is here, and feels pretty good right now. We plan on a nice dinner with my mom and Fritz, and then to take Neil's aunt out on Friday for a late lunch/early dinner. The boys have a sports day planned with Sunrise Day Camp on Sunday. The fact that he feels well enough to participate in these is something we are truly thankful for. We are truly fortunate. My heart goes out to all those who are missing their family members today.

I am today also very thankful for Zachary. He is truly one of the best children I have ever known. I don't even know why I have been so lucky to be blessed with such wonderful children. As a child, I was nowhere near as good and nice. Even as an adult I am not easy on my family. Zachary is so gentle and thoughtful. I have much to learn from him. Maybe that is the reason.

I continued to be grateful for my husband, who continues to stick with me through the bad and worse, as well as the good. We are always hopeful that one day we will see more good than bad.

I can't even begin to express my gratitude for my mom and Fritz. They have more or less taken over raising my children, and my brother's child, though for different reasons. I nominated mom for Grandmother of the year not long ago, and I really meant that. I can't understand why she didn't win, but she is always a winner in my book. My children love them and consider their house their home.

My friends have changed somewhat in the post-cancer days. We've all grown and matured and become better people I think. I've strived to be a better friend, and I think I'm moving in the right direction, but I have a long way to go. I'm so grateful for those friends, old and new, who continue to stand by us, love us, support us, and try to keep our lives full with things other than cancer. Life could get very overwhelming without them.

I am so greteful for The Morgan Center and Sunrise Day Camp, for bring some normalcy, love, fun, and support into our lives. Also, for the support and generosity from organizations such as Make a Wish, A Mother's Kiss, Friends of Karen, The Ronald McDonald House, Michael's Way, The Luke Nuehedel Foundation, and the John Theissen Foundation. All of these wonderful organizations have touched our lives in some way. (I'll add links later). I'm also thankful to all those blood donors who continue to give the gift of life. I will be giving at Hope Lutheran Church on Monday. No matter where you are, you can contact The New York Blood Center to locate a drive or location near you and set up an appointment.

Today I have in my heart, those families who have lost their precious children. I will not name them all here, because the list is too long. It is so heartbreaking. I also keep in my prayers those who are still fighting this dreaded disease, and other cancers, especially the children. Sadly, their numbers are also too overwhelming for me right now.

Many may consider this a rather depressing update. I suppose it is in a way. I no longer look at Thanksgiving as a time to eat like a pig and go shopping the next day. I think I have finally come to understand the real meaning of the holiday. The original pilgrims had come through a very hard time, and wanted to celebrate with their friends and family, and those who helped them. They didn't call this a "Thanksgiving", but it is from that original harvest celebration, and many others to come, that those traditions grew. I feel like we have also come through a very difficult time, and I'm looking to celebrate, before the hard winter sets in.

“Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the LORD is good and his love endures forever; his faithfulness continues through all generations.”- Psalm 100:4-5

Happy Thanksgiving Everyone.

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Tuesday, November 21, 2006 8:43 AM CST

Just a quick update to let everyone know Kendall is doing OK. He feels great right now and is full of energy. He has been eating well and very active, and having a great time. He is due for another round of chemo on 11/27 if his counts recover. If not, it will be the following week.

I got a new camera yesterday. My old one hit the ground one to many times. I must be more careful! So hopefully I will have new photos soon.

Happy Thanksgiving to everyone. We have much to be thankful for.

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Sunday, November 12, 2006 9:16 PM CST

Well, Kendall made it through the week of chemo, and feels much better than last week. Even with all going on, as the photos above show, he still had a lot of fun this week! Kendall didn't make it to church last Sunday, but Zachary and me said a special prayer for healing for him. He was feeling a bit better later in the day, and we went to Paige's (our friend's daughter) birthday party. Some of the photos can be seen on the strip, or on Kendall's photobucket site. We all had a good time and great food. Thanks Rob and Linda!

The chemo was prety straight foward, but it meant long days in clinic! He needed two hours of pre-hydration and meds, then one hour of chemo, then four hours of post-hydration before they let us go! But he got to go home each night to his own bed, so it was OK. I actually manged to get a day and a half of work in too. Zachary came and visited towards the end of treatment each day. Kendall's appetite has slowly returned, his energy level has increased, his pain has greatly decreased and is really almost gone (he hasn't needed any Tylenol since Paige's birthday). I'm sure the chemo is doing some good. He gets a bit tired after a lot of activity, but I think that may be some anemia. His red cell count was low on Friday, but we felt he could make it through the weekend. We expect a transfusion tomorrow afternoon.

Yesterday, Kendall and Zachary had a great time at their friend Gia's birthday party! It was such a difference from the how he felt even a week ago! Kendall actually agreed to a face painting (see the tiger above.... Zachary is a pirate). This is almost unprecidented. He was involved in all the activities and even ate a few bites of pizza. He had a good dinner when we got home, and overall felt great. Thank you again to Denise from The Little Sunshine Playcenter. She donates her time, supplies, and facilities to throw parties for children with cancer. We are grateful for her generosity and compassion.

Today was Rememberance Sunday at our church. This is not an official Lutheran holiday, but a special day borrowed from the Church of England. It is celebrated the second Sunday in November, and close to Veteran's Day. We have a special service to honor those who have been important to us who have died over the past year. They read the names and we place flowers on a wire cross. Names of other who have died more than a year ago are also read and honored. The names of our fellow NB warriors who have gone were all in my heart, especially: Nick Snow, Benny Petz, and the unforgetable Christi Thomas. Also, another cancer warrior who's valiant struggle touched so many lives, Jacob Duckworth. Part of me wishes I never knew about any of these children.... that I could go back to that nice world where I was so worried about my kids diet, and uncovered electrical outlets, and making sure they were sleeping on their backs. My heart breaks for every loss, and I grieve with these parents, even though I haven't met most of them. But then, I am also enriched and inspired by these amazing children.

Here is the Cross of Rememberance:



The top photo on the page was taken last year at the Mineola Memorial Park, near my dad and Barbara's house. She told me that she and and my dad used to walk through it and stop sometimes on the way to visit me in the hospital when I was on bed rest towards the end of my pregnancy. They came to visit me almost every day I was there. I just love that photo and thought it was a fitting tribute to our veterans. We have several in our family, mostly gone now. My grandmother, Neil's Mom, my father, and Neil's dad were all vets. We miss them very much. After church we went to the cemetary to place flowers and flags on their graves. I wanted to go yesterday when the weather was nice, but there was no time. So we placed flowers in the rain. Strangely, the torrential storms all but stopped during the time my mom, me and the kids were out of the car around the headstones. It started almost as soon as we got back in the car. We are truly blessed.

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Sunday, November 5, 2006 2:13 AM CST

Yes, I finally posted the Halloween pictures! You seen see more of them here.

Kendall was feeling pretty crummy on Friday, and basically refused all food. He barely drank and spent a good deal of the day lying on his side. Then he woke up on Saturday morning cheerful and hungry! He ate two of Neil's special german-style whole wheat pancakes, and some orange, and drank a whole glass of milke with heavy cream! He ran and played with his brother, and a lot of his spunky personality returned. Neil took the boys to McDonald's for lunch (better to get some time in there now before his counts get hit). He said that Zachary was afraid of playing because there were a lot of bigger kids there, but Kendall jumped right in and climbed and played with them! He was nervous about his port, and he got tired quickly, but at least he did it. They went shoping for a present for their adorable friend Paige who turns 2 today! We'll be going to her party later.

Even when he got back, Kendall was running and lively for a long time. He fell asleep early though, around 7pm. He slept straight through to 2:30 am (note the time of my post today!), when he woke having to go to the bathroom. He is cheerfully snuggled in my bed, and just has a happy and content look that hasn't been there in a while. So for now the symptoms seems to have subsided. He still was hunching over when standing, so I have no doubt there is still some pain, but not as bad as it was.

Assuming he is still feeling well in a few hours, I'll take them to Church later. The first Sunday of the month is set aside for special healing prayers. They also annoint the sick on this day. So as long as he feels OK, I'll have him annointed again. It's been a long time since we made it to a healing ceremony. (Last one was before relapse I think!). After that is Paige's party, then on Monday we start chemo outpatient at StonyBrook. They will be long days, but hopefully he will tolerate it well and we will find ways of amusing him.

Today we recieved a great box of toys from Ryan , and his mom Kim. What a great family. They will also be starting a new treatment next week over at Sloan Kettering. It is a painful antibody study, so please give them some love and support. The boys loved the toys, especially the "gross" ball and snake. Thanks again Kim... you're a sweetheart.

This weeks prayers will be specially for: Nathan , Spencer, Laura , Katie , Carter , and Penelope . They are all either facing changes in treatment or at a difficult time. Remember all our NB warriors in you prayers.

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Thursday, November 2, 2006 7:29 AM CST

Things aren't too bad all things considered. We did end up getting hospitalized for fevers on Wednesday early morning (around 3am), but we got out later in the evening, in time for Kendall to see the therapy dogs at Ronald McDonald House (RMH) and play with some of his friends. The scans show some progression, a small increase in tumor size on CT and slightly brighter on MIBG, but nothing else. I was worried that it was more extensive, but this isn't too bad, it is just that the ixabepilone isn't strong enough. The next treatment was going to be MIBG therapy, but it isn't available right now (4-6 weeks wait), so we will do a few rounds of topotecan/cyclophosphamide to "bridge the gap". He has had this before and it had great effect on the NB and was very well tolerated. We will be looking at other options in the meantime, but for now this will buy us some time to plan.

Kendall did get out trick-or-treating with his cousins on Tuesday and had a great time. He also got to enjoy the party at RMH and had fun there too. The fevers were determined to be "tumor" fevers, similar to when he was first diagnosed. As nothing grew on any of the cultures or showed up on any of the tests, they decided to let us go last night and just keep him comfortable with tylenol as needed. We will start the "Topless Cyclone" as my listserve has nicknamed this treatment on Monday, hopefully outpatient at StonyBrook. If they won't do it outpatient, then we'll have it done in Philly.

We heading out now. I'll try to post some photos later this week.

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Sunday, October 29, 2006 11:03 PM EST

Kendall is feeling a bit better today. Unfortunately, he missed yet ANOTHER Halloween Party! Due to the time change and windiness, the party at my mom's started earlier than we thought. I had sent Zachary, while Kendall went to get another dose of antibiotics at Urgent Care. They did their best to hurry it up, but by the time we got to my mom's the party was over. I'm so depressed it isn't even funny. He will get to the Morgan Center's party tomorrow, but I have to work so I'll miss that too. That is three major disappointments in less than two weeks.... and right before scans that we are concerned about too. UGH!

He does seem to feel better though. He hasn't needed any Tylenol since about 2AM. His temperature has hovered around 99-100.3, but he's been more comfortable so I've been riding it out. He had a bit of a cranky time at my mom's when he first woke from a late nap while I was out shoping. But once I took him home he was better.



Saturday, October 28, 2006 10:32 PM CDT
Sorry to say Kendall still isn't feeling so great. He did make it to the Morgan Center on Wednesday, and was having fun, but got quiet and tired after a bit. We went to clinic, and he was very uncomfortable and cranky. After discussing the bladder symptoms again, we decided to do an ultrasound and culture the urine again. He felt better with some Tylenol and was pretty active that night and even ate well. They ultrasound didn't show anything obvious to cause the symptoms. We also decided to consult a pediatric urologist after the next scans. He was supposed to have a followup with one around age 3-4 anyway. Maybe he can shed some light on this if nothing shows on next weeks scans.

As expected, Kendall's fevers started on Thursday (this has been the pattern for a while). They were low-grade (100-100.5) and easily controlled with Tylenol. I decided to try waiting them out. On Friday night he spiked a more significant fever (101.8), and he woke up several times during the night crying out. At 4AM he also seemed warm again, and his fever was up to 102.2. More Tylenol and he slept a bit, but was up with fever of 102.6 at 9AM again. That was 3..... off to Urgent Care for us. His bloodwork from Wednesday was great all around, and he isn't even a little neutropenic. The culture from then was also negative. They did decide to culture the blood today and give a dose of IV antibiotics - ceftriaxone. This is just to cover any possible infection that may be brewing.

Unfortunately, that meant missing a great party hosted by a good friend who's son just recently graduated the Morgan Center. Zachary went to the party with my mom (Thanks Mom!). But by the time we got out of clinic it would have been too late, and Kendall was exhausted anyway. Kendall got a good nap after clinic, and woke up cheerful. My friend Kathy brough her daughter over to play with the boys for awhile. They were THRILLED! The kids all had a great time, though it was in short spurts for Kendall. He'd play and run around, then rest quietly for a bit, then play again. His temperature crept up a little, but stayed below 100.5. I decided to hold off on the Tylenol and see what happens. He seems more comfortable in general.... so we'll try waiting it out. Kendall enjoyed a really cute phone call from Ryan and his mom Kim. Ryan has been struggling with his new port, and Kim has been telling him that Kendall has the same kind and he is OK with it. I've used this kind of technique with Kendall before, and it is surprizingly effective. When these kids are shown they are not being singled out for some special torture, that others have the same kind of thing, they sometimes just adjust faster. We had a very kind older boy in clinic talk Kendall through an IV blood draw once, and he has been so much better about it ever since. He also talked to Ryan about swallowing pills (Ryan will be starting accutane soon), but the phone was breaking up and he was getting tired. We'll try again another day. This also does a lot of good for Kendall. His eyes lit up at the thought of imparting some special "knowledge" to another child in the same position as him!

I'll take him for another dose of antibiotic tomorrow. I decided to skip the family day at Sunrise Daycamp, as it will probably just be too much on him. We'll go to a smaller Halloween party at my mom's complex instead. The timing will work out better with the timing of his antibiotic, and at least this way Mom's house is right there for him to rest if he feels crummy. I'm a little disappointed about missing family day, but I think it is for the best.

Please keep Tanner in your prayers. He was definitively diagnosed with AML, and just started treatment. Also, don't forget our fellow warriors: Nathan , James , Spencer , Nate, Laura , Russell , Katie , Carter and Penelope in your prayers. All these children are struggling with their treatment. They are all great kids who deserve a decent chance at life.... just like Kendall.

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Tuesday, October 24, 2006 10:13 PM CDT

Ok. As promised. Some new photos from the past week or so. As you can see, it wasn't all suffering and misery! We made time for fun too. The opening photo and the one of Kendall climbing the rock wall and the boys playing virtual soccer all come from last Wednesday at The Franklin Institute. I highly recommend every get there at least once or twice if you are in the Philadelphia area. Very cool museum! You can see more photos here . Then you have some great shots at the zoo. The photo strip is from the Ronald McDonald House and includes pictures of Kendall dressed as "Midnight" the magician! Also, a very odd cheerleader in galashoes photo. You can see these here .

On Saturday, mom and I took the boys to the Bronx Zoo, thanks to a friend of Fritz from work. Thank you Felicia! We had a great time, even though Kendall wasn't up to walking much. He managed to climb just fine though, and really loved the children's zoo and monorail. We also had our first camel ride! We will definitely have to go back again on a wamer day, and I'll be more careful not to mow down any Pink Power Rangers! (Sorry little girl, I just looked away for a second!) The Children's Zoo was particularly great. More photos can be seen here .

Sunday was a quiet day, but we went in the afternoon to Sports Plus, so Kendall could ride the roller coaster! Zachary didn't want to ride, so only I had to get bumped and bruised on that blasted thing! The boys played some games, but the place has really gone downhill in recent months. A lot of games were broken. They still had fun though. I'm afraid they missed church that morning because we were out late and Kendall was feeling so crummy. But a little tyelnol and some extra rest and he was OK.

Medically, he's been kind of off. He does seem better each day than he did last week, but he still shows some signs of discomfort. He now complains more specifically of pain in his tailbone and hips. But it is sporadic. I can't really tell if he is really hurting sometimes. He seems reluctant to sit or stand for long though.

One of my listserve friends just found out here son Tanner now has a type of leukemia (AML). He fought throught he same treatment protocol as Kendall (or similar anyway) at only 8 months old, and has been NED for over 2 years now. They discovered the leukemia on a routine blood test. Send them some love and support as they gear up for another battle.

Enough for now. I need to sleep. We are still planning to scan next week. Keep us in your prayers!

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Saturday, October 21, 2006 7:52 AM CDT

Sorry to not have updated sooner, but we had a hectic week and little computer time.

Kendall did OK with the rest of the chemo for the week once the Decadron was added in. He was great taking the med.... 5 small pills which I stuffed into a capsule and he swallowed all at once. He had to get it at 9pm and 6am, then do the chemo around noon (with other premeds given between 10:30 and 11:30), so they were long days. But not too bad really. He would fall right back to sleep after taking his capsule at 6, then we would get up and have breakfast and head to clinic by 10. He was out of there most days by 1:30.

On Wednesday night, I took the kids by myself to the Franklin Institute... they had a free community night! What a cool place. I will probably look into getting a membership at some point. I think it is reciprocal at some other science museums, and want to see if there is one in our area. I'll have pictures up later tonight. Then on Thursday Neil and I took them to the Please Touch Museum, and they had a ball as usual. Kendall seemed relatively active, but he was very tired afterwards and not his usual playful self. He rested a bit then went and played in the playroom while I sewed the boys pillow-cases! (yes, I sewed!). I'll post more information on the organization that sponsers this later (brochure is in the car!). Many children who have stayed at CHOP have received some of these special pillow cases, made by volunteers. We have a couple of them already, and I made Kendall one with robots and Zachary one with motorcycles. They are easy to make and really cheer up a hospital room. We need an organizer to start a group here at our local hospitals!

Friday was uneventful as far as the chemo went, but we left too late to get to Dutch Wonderland. I was so very disapointed and depressed. I really wanted to take the kids, but I got my places mixed up and didn't realize how far it was. I also didn't take into account Philadelphia rush hour traffic on a Friday. We ended up turning around and coming home. It was a long time in the car, and by the time we got home, Kendall was in a lot of discomfort. He settled down on the couch and ate a little bit, but he is still rubbing his bladder and hunching over a bit. He is also constipated, so that could be contributing. But I have a bad feeling that this chemo is just not working. He slept well though, and doesn't want any pain meds. We'll see if today is better. I'm going to take them to the Bronx Zoo. If tomorrow is nice we will go to Adventurland, if not, Sports Plus (so he can get on the rollercoaster this weekend). I may reschedule our Dutch Wonderland trip for next Friday, but there are a lot of variables. We'll see.

In any case, keep praying. Don't let my worries make you lose hope. We still have a lot of hope. His bladder problems could be completely unrelated to the cancer for all we know, and if next weeks scans show improvement or stable disease, and he is still having them, I will insist on a urology consult. Keep our fellow NB warriors in your prayers too: Laura Stiles, Carter Finger, James Runde, Hannah Douglas, and Brian Brisco are all having new struggles or starting new phases of treatment. I'll put some links to their websites up later. Don't forget to keep gorgeous Penelope London in your prayers, she is doing awesome last I heard with a new drug that is not even meant to treat cancer! She was given a couple of weeks over a month ago, and has actually shown some signs of improvement. Also, Ryan Malarkey is going for scans next week.

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Tuesday, October 17, 2006 11:51 AM CDT

Kendall has been feeling better each day, and over the weekend really improved. He enjoyed a birthday party for his friend Drew from the Morgan Center on Sunday, and was fairly active and not complaining of pain. He didn't eat much, but otherwise has been feeling well.

Of course, being on this rollercoaster means that sometimes the track goes up, sometimes, down, and sometimes just spins in unpredictable circles or even upside down! Last round of this chemo was a breeze for Kendall. He got his infusion and was out playing each day afterwards without a care. So I figured it would be the same this time and I could manage Zachary and Kendall just fine by myself for a day or so, until my sister Kathy could join us on Tuesday or Wednesday. I figured my poor mom could use a little break to get some stuff done for herself. No such luck. We drove up yesterday at 5:30am, getting here to CHOP around 9:30. Kendall promptly spilled his milk all over himself and the carseats, and I didn't have time to do much more than change him and blot it up. So my carseats spent several hours in a hot garage soaked in milk. Ick!

We get upstairs and the pharmacy was a bit slow getting his medicine. But the boys were good, playing with computers and being on their best behavoir after the milk incident. Kendall got his pre-meds and fell fast asleep. Zachary was just a little angel, playing quietly while I talked to a researacher doing a quality of life study for a bit. Then we played tic tac toe for a bit. Kendall's meds were almost done, and he will still sleeping, so I went to the bathroom for a minute. When I come out, there are no less than 5 nurses around a screaming Kendall, and poor Zachary was just sitting there looking worried. They weren't quite sure what happened to Kendall. He only had a few minutes left of his infusion, and he suddenly woke up screaming and saying he was going to throw up. His breathing was fast and shallow, and they gave him a little oxygen. His blood pressure was a little high, and he was very agitated. He calmed down, and they felt it could have just been a panic attack when he woke and didn't see me. So they gave the rest of the dose. He did cry out once more, but he got his medicine. Then he started getting the shakes and goosebumps. His temperature went up a bit, not too high, but it was going up. He was moved to another chair and they put the oxygen tubes in his nostils. At that point, he kind of bugged out. He didn't like that at all and put up a huge fight. Poor Zachary was so good through all this, just sitting quietly and playing with some of the toys I got him. Kendall talked the nurse into take the oxygen thing away, and he calmed down. It still wasn't certain if this was a reaction to the chemo, or just a bad time waking up from a benedryl funk. But he quickly improved and felt better, and we left.

The boys played on the computers up in the Connoley Center, had a few bites for lunch, and we went back to the Ronald McDonald house. There he tore the place up, running and playing, and even ate a little. He seemed to feel better than ever, and was happy to see Nonni and Poppy arrive! My poor mom and Fritz dropped everything and rushed down to help out as soon as they heard what happened. We were OK, but I was relived to have someone to watch Zachary. Even though he was fine, it must have been distressing for him.

Today just me and Kendall came to the hospital, after he ate a whole waffle and a cup of milk. This is the first food he ate with enthusiam in a week. He promptly fell asleep during his premeds. About 5 minutes into the infusion of ixabepilone, he woke from a sound sleep screaming and coughing and saying he had throw-ups. He didn't vomit, but he did flush red and there were hives on his chest. It was determined that this was definitely a reaction to the medication. They cancelled the infusion for today, and would like to try tomorrow after adding in some steroids (dexamethasone). Previous experience has shown that this helps with this medication when there is a reaction. These reactions are pretty common, and often they can tolerate the med if they can get the right combo of premeds. It is an immune response against the drug, and is very scary! But the staff here at CHOP is used to this and they handle it all very efficiently and professionally. It was very comforting to see really. He quickly recovered once the medication stopped, and is now sleepign off the benedryl peacefully.

Please say an extra prayer tonight that tomorrow's dose will go smoothly with the addition of the steroids. I'll update tomorrow after the treatment.

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Friday, October 13, 2006 6:34 AM CDT

Just a quick update. Kendall had been feeling well until Tuesday night. He's been active, eating well, and having a great time. Sorry no new pictures, but I haven't had a chance to upload them.

On Tuesday night he started rubbing his bladder area again. On Wednesday, me and the boys went to CHOP for an exam, and his appetite was definitely low, but his bloodwork was good and he was determined to be in good shape. I told them I was worried and it was decided we would go on with the next round as planned. His symptoms had disappeared by the third day of the chemo last round. Yesterday, the low-grade fever became creeping in and the bladder seemed more uncomfortable. His appetite is poor, but he tries to eat because he understands it is important. I'm taking him to clinic in a few minutes as his fever is a bit higher and they will want to culture his line and urine, even though it is likely to be negative again (you never know!).

We are still hopeful that this next round of chemo, set to start on Monday, will be beneficial. We are leaving the scans set for 10/31 and 11/1 after that round and we will see where we stand at that point.

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Wednesday, October 4, 2006 6:30 AM CDT

I am so sorry for not updating sooner! I've been exhausted and busy, but Kendall is doing GREAT!!!! The worrisome symptoms last Tuesday were gone by Friday, and Kendall really enjoyed the rest of his time at CHOP.

I have beautiful pictures from their visit to the Independance Seaport Museum and the Submarine Becuna and Cruiser Olympia. I have read more about these ships and it turns out Olympia is the oldest Steel-hulled warship still floating. It was Commodore Dewey's flagship during the Spanish American War! For some photos of my boys climbing around on the ships, click here. The password is warrior.


On Wednesday we missed Zachary, but after chemo and a brisk walk back through the colleges, we went to the Please Touch Museum and Kendall had a great time running around and playing with all the stuff there. There were only a handful of kids as school is in session, but we still had fun. That night, Kendall actually asked for tacos, so we stopped at Taco Bell for dinner. He then saw the Pizza Hut pizza there, and wanted that too! He ate half a personal pie and most of a large taco.

On Thursday, Kendall felt great and as it was a beautiful day, we went to Clark Park after chemo. It is a nice playground, but not as nice as the Smith Playground over in Fairmont Park. It is closer to the RMH though, and we got to see the working Trolly Cars there! We went out for ice cream after dinner with Kim, who's son Ryan just finished his second transplant. They are now home thankfully, but keep Ryan in your prayers. He will be very compromised for a while and will have a lot of resrictions even at home. (Thanks Kim. Sorry Kendall wouldn't eat any ice cream, but I enjoyed mine!)

Neil was unfortunately sick with a nasty cold, so he didn't come with Zachary. Zach stayed by my mom's an extra day in the hopes he wouldn't catch it (he didn't!). Neil and Zach came on Friday, and met us just as we were leavnig clinic. Neil then rested in the room at the RMH for a bit, while Zachary, Kendall and I went back to the Smith Playground. Unfortunately, it was closing soon, but the boys had fun while we were there. Photos from the Please Touch Museum, Clark Park, and Smith playground can be seen here. I also have put a little slide show up on the page of some of my favorites.

On Saturday we checked out and went straigt back to the Smith Playground, but it started to rain! However, there is a great house to play in and the boys had fun inside. Lots of kids there (I pray none were sick!). Kendall's counts aren't expected to drop much with this chemo, so I wasn't overly worried. After this, we went to Taco Bell for lunch, and I got my first parking ticket!!!! I didn't read the sign carefully, I thought it was free on Saturdays too. It is just Sunday! Oh well. I'll be more careful next time. Then we went to their cousin Andrew's fifth birthday party! What a great time they had. It was a wonderful party at a place called "It's a Giggle". They had a Star Wars theme which my boys loved, and the place was just a ton of fun. Photos can be seen here. Kendall actually climbed the rock wall! I don't have a photo of it as my camera ran out of room, but maybe my brother caught one. All signs of illness were gone. Kendall felt great and ate well. We went back to my brother's after, and the boys had a great time with the other kids. I left very late and drove home (I know, I'm nuts) at 10:30! I made it there by 1:30 a.m and slept like a log for the first time in a week. We totally missed Sunday School and Church, and had a quiet day at home.

Today we got an early clinic appointment at StonyBrook, then off to the Morgan Center. Kendall is looking forward to seeing all his friends again.

Thank you to everyone who continues to check on us. Please keep our fellow warriors in your prayers. Also, please keep the devasted families of our warrior princesses, Christi Thomas and Erin in your prayers. Lastly, please pray for those poor Amish families who lost their precious daughters. What a senseless tragedy.

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Tuesday, September 26, 2006 8:54 PM CDT

Kendall is doing OK so far on the new chemo. We started yesterday. They pre-medicate with benadryl, zofran and zantac. He pretty much slept from about a minute after the benadryl until we got to the Ronald McDonald House. He had no bad reaction to the chemo, which is called ixabepilone for anyone interested. He ate well and was pretty active for the evening, especially once Zachary got there. He was thrilled to play with his brother.

Today he was showing signs of some tummy/bladder pain again (hunching over, rubbing the bladder area, laying on his back with his legs up, etc). This had me concerned a bit, but there isn't much to do but press on and hope this chemo will have a positive effect. He refused pain meds and says he feels OK. We started the day with a walk through the University area. It is absolutely beautiful. The walkways are well-kept and landscaped, and the architecture is impressive. The squirrels are very friendly too! Kendall really liked the walk, but I think I will need a better stroller soon. My umbrella just doesn't cut it. It is too flimsy for this kind of walking. It also has no way to recline when he needs to lay down, and really wasn't meant for anyone over 25lbs (he is about 35lbs). I just have to decide what kind to get. Anyway, he slept through toady's chemo too, and I had a nice vist from Ryan Malarkey's mom Kim. It was very thoughtful of her to bring some snacks. Ryan is still hospitalized from his transplant, so send some love and prayers their way at www.caringbridge.com/visit/ryan .

After chemo we went to Penn's Landing and the SeaPort museum. It was very quiet today as kids are in school, so the boys really had a great time playing each exhibit over and over. They loved climbing in the boats, and pushing all the buttons. They especially liked the exhibits about wind and sails. Then we went outside and toured the Olympia (an 1892 cruiser) and the Becuna (a WWII submarine!) I will post some great photos of the boys climbing those ships when I get home. It really was very interesting. I can't see how anyone lives on those submarines! Talk about cramped quarters. Kendall was very active throughout all of this, though he did occaisionally bend over or squat down uncomfortably. But he was running and playing and having a great time. We went to Campo's for a late lunch of cheese steaks. He wouldnt' eat anything though. He was very y and we went back to the RMH. After a bit of quiet time, he had a great time riding his scooter down the hill with Zachary in the courtyard of the RMH. They went so fast!. Then he played enthusiastically for the rest of the night with Zachary and a volunteer and some other children. I got him to eat a bit finally, then he got a sponge bath and movie before bed. So it was a full day with some ups and downs, but mostly they were ups. Kendall seems fine most of the time, and even when he looked uncomfortable, it didnt' seem severe.

Tomorrow Zachary will go home with Nonni and Poppy and baby Nicholas, then hopefully he will be back Thursday with Neil. We will miss him!

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Saturday, September 23, 2006 11:57 PM CDT

I have added updated our PhotoBucket page. Email me for the password. There is a new section marked School Days 2006. I have photos from their first day at the Morgan Center, and some from a Country Fair at the Sachem Public Library we went to last week. I still haven't developed my disposable camera photos, so none of the Great Adventure ones yet, but I will get to those soon. There are some very adorable photos of their cousin Nicholas. He is getting big and is a very cute and charming baby! What a great smile.

Yesterday was the first day of the Morgan Center for the boys, and they were entertained by the wonderful and generous Theresa from Sillybrations. She has often donated her time and services for the children at the center. We also met Denise from Little Sunshine Play Center who came to tell us that she also donates her time and facility to help make special days for children with cancer. She is planning on hosting birthday parties for our children. I can't even begin to tell you how much this means to us. The last two birthdays for my boys were of course wonderful, but it was a lot of stress in planning and financially it wasn't easy. But our children's birthdays are ALL very important and will be celebrated properly no matter what! It is a wonderful service she and Theresa provide.

After school the boys spend quite a bit of time rolling down that hill. Needless to say, the new outfits that Poppi bought them don't look quite so new now! But it was worth it to see the look of joy on their faces as they rolled down and climbed back up over and over.

We then went to visit Aunt Gladys in the nursing home and bring her some of the sandwhiches from the party and the unopened cakes. She was thrilled to see the boys (and for the treats), and I only wish they weren't so amped up from the sugar overload! They just had too much energy to stay inside. So we only stayed for about 45 minutes, then went to Eisenhower Park's playground. They had a great time playing and climbing and running with the other kids. I had to actually carry Zachary out because he just didn't want to leave! There was no choice as we had to drop my car off for service. It is fixed now and ready for another trip to Philly, my second home. Hopefully we will get a room at the Ronald McDonald House for the week. Mom and Fritz will bring Zachary for a few days, then go back so he can go to his swimming classes, then Neil wil bring him back down on Thursday and Friday. We hope to set up some fun things to do after clinic. With any luck, the side effects will be mild, and we will be able to enjoy their cousin Andrew's birthday on Saturday!

Thank you all for checking up on Kendall's progress. We are very hopeful that the next treatment will have good effectivenes without too many side effects.

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Friday, September 22, 2006 4:10 AM CDT

Well, it was a tough trip driving-wise, but otherwise our trip to CHOP went well. I left early in the morning (5 am), and had an easy drive until I left the NJ turnpike. There was an unusual amount of traffic at the exit ramp and through the entire drive to the hospital. I still managed to get there at 8:50 am, and Kendall was quickly accessed and bloods drawn, ready to go. Then.....waiting. Anesthesiology was late. I've been pretty lucky with our visits to CHOP so far, so I guess it was my turn to be delayed. They didn't even show up until about 10:30am! Our appointment weas at 9 and you are supposed to be there half an hour early. Here I was worried that we would be holding up the whole day!

Kendall's first blood draw at 9am showed he had an ANC of only 1421. Now that isn't bad, but we needed 1500 to register for the study. They figured it would go up enough by Monday, but you have to be registered for the study before starting.... this meant checking counts on Friday or even Saturday until they go back up! So the wonderful NP Pat Brophy told me to have Kendall do some exercise, run and jump around for a bit before the procedure, then they would draw another blood sample after the procedure. I didn't see how this would help, but she said that stress soemtimes causes extra white blood cells to pump out into the blood stream. I was sceptical, but of course we tried. Kendall had fun galloping up the hallway, the skipping through the waiting room, and jumping up the next hall. They did the bone marrow aspiration, which went without a hitch, and he woke well from anesthesia. His second blood count? The ANC was over 2200!!!! I almost didn't believe it!

In any case, his other counts were good enough and we will start on Monday regardless of the bone marrow results. I should have them by then. We will be in clinic for about 3 hours each day Monday through Friday, then we have the rest of the time off. Neil is arrannging to bring Zachary for some of the time.

While at clinic, the lovely Laura Styles was waiting with us for her own procedure. She had the play area smelling so nice with a cool soap craft! I finally got a chance to chat with her mom a bit. They are another really nice family battle this horrendous cancer. She will also be starting a new treatment next week, so send them some prayers and support. I also got to spend a little time with Kim, Ryan Malarkey's mom. Ryan is still in the second transplant with counts around 0, so we didn't visit him, but it was nice of Kim to stop down at the cafeteria for a few minutes while we were eating. Pray for those little stem cells to start kicking in soon! Don't forget Penelope London and Erin are still battling this monster with all they have. Carter Finger is also waiting for white counts to bounce back up so he can be released from the hospital. Keem them all in your prayers.

As for the Thomas team, Today they will be burying their beautiful princess angel Christi Thomas, something parents should never have to do. I have no doubt it will be an absolutely beautiful and touching send off. I wish it was possible for me to go, but will will keep this sweet family in our prayers. They have started up a memorial foundation: Christi Thomas Memorial Fund. They will use the fund to help other children with cancer live their lives to the fullest. I have no doubt Angela and Shayne will come up with great ideas for it.

Anyway, enough sadness, we will also be living our lives to the fullest right now. Today is the opening party for the Morgan Center . The boys have been looking forward to returning all summer! And we will do something fun this weekend, depending on how sore Kendall is. So far he has only minimal pain, and he doesn't want to walk or bend, but he also doesn't want any pain meds. He was playing with Zachary pretty hard last night while I fell asleep in exhaustion on the couch! We had a long ride home due to an underground fire and explosion in center city Philadelphia, which necessitated evacuation of several buildings! Luckily, no one was hurt.

Hopefully I will have some new photos to share soon. I will be removing some of the older guestbook entries so it will load faster (I've saved them already).

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Tuesday, September 19, 2006 8:10 PM CDT

Christi Thomas, just before leaving her beloved home in Tiffin, Ohio for the long drive to Children's Hospital of Philadelphia for the last time, about three weeks ago.

At 9:00 am this morning, Heaven welcomed a very bright and beautiful new angel, Christi Thomas. I have met this exceptional child (there is no better word to describe her) a couple of times, and have followed her journey through the hell of neuroblastoma for the last two years. Her family is very strong, and just the nicest people you could ever come across. Angela, Shayne, and her adorable little sister Shayla, are certainly devastated and exhausted. There is no way to put a loss like this into words. Throughout all their trials and tribulations, they always took time to offer others their love and support, and good humor. I am so heartbroken for them. I haven't told the boys, and I probably wont at this point. Please send your love, support and prayers for peace and comfort to this wonderful family.


As for Kendall, he continues to feel quite well and be very active. We went to Great Adventure this weekend, and tomorrow I will take him to swim class before heading to CHOP for a bone marrow aspiration and some other tests on Thursday Morning. I didn't fill up my roll of film, so no new photos yet, but I'll post them later with a proper update. Right now I'm just too sad to talk about the fun we had over the weekend. We plan on being in CHOP all next week for chemo if all goes well on Thursday.

Please continue to pray for our fellow warriors:

Penelope London and Erin and, Russell Lee.

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Thursday, September 14, 2006 6:59 AM CDT

Just a quick note to say that the delayed nuclear scan showed the tumor does uptake the MIBG agent, so that treatment is still an option for us. But we will save it for now and try an experimental drug next instead. We plan on doing the pretesting next week and starting on Monday.


Well, we're back from Philly, and unfortunately, the current protocol is no longer working for Kendall. The abdominal tumor has grown somewhat, and was probably what was causing his symptoms. It is still relatively small and there are no other areas seen on CT or MIBG. I still don't have word as to whether it is MIBG positive. We had to stay and do a delayed image and special 3D scan later in the day (or else comback on Thursday!) and I don't have those results. So unfortunately, despite my best efforts, Kendall missed his first day of swimming classes. Zachary went though, and he promises to teach his brother everything he knows! That Zachary is starting to be a real character. He wanted Neil to go out in the middle of the night to get him a new Scoobie Doo movie. When Neil said no, he replied, "If it was Kendall you would go get it!" Poor Neil! He had him order a movie online and Zachary is anxiously awaiting his package.

In any case, depending on what today's MIBG scan shows, there are several options available. They will be contacting me at some point this week to let me know which they feel is the best. In the meantime, Kendall feels just great. You can see him hanging around at Smith Playground above, and on his PhotoBucket site.

Here is Kendall climbing through the spider's web at the park:





As you can see, it wasn't all doom and gloom in Philly. Kendall had a great time and didn't want to leave! I got to meet the beautiful Laura Stiles and her terrific mom Mara. She's been battling this disease nonstop for the last year-and-a-half, and finally showed some signs of progress! She still has a long way to go so say a prayer that the next treatment helps continue to beat this monster back into remission. Kendall had a great time playing with the VERY active and healthy looking Jared Strayer. They ran and climbed and wrestled for hours. Such a great kid! His mom Connie helped keep me company through the long day. This wonderful family is celebrating two-and-a-half years of NED! I also got to see Ryan Malarkey's mom Kim. Another great family. Ryan is just finishing his second transplant so we did not visit him in person. They need to keep him isolated and protected until his stem cells engraft. Keep him in your prayers. Kim, Connie and I had a great time sitting around the RMH watching the kids play. My camera ran out of batteries, but Connie promises some photos. I'll link to them later.



Please pray for our fellow warriors:

Christi Thomas is nearing the end of her journey. I stopped to see her briefly while at CHOP. I can't even explain how heartbreaking it is. Please pray for her peace and comfort, and strength for her heartbroken family.

Penelope London and Erin continue to fight hard. Please also remember my friend Russell Lee and his family.

Anyway, we are hopeful that the next treatment will be the one to really put Kendall back in remission. Thank you to all who stop by to check on Kendall.

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Saturday, September 9, 2006 7:28 PM CDT

Kendall seems to be better and better each day. I am actually starting to think this was just some random odd virus that got him down. He is eating up a storm. This morning he had three of Neil's special, whole wheat, German-style pancakes, with syrup and butter, one sausage link, and a decent amount of smart start cereal. He drank most of a glass of orange juice and a whole glass of milk over the next couple of hours. No complaints of pain. No laying down and holding his bladder area. Very active and cheerful. Fighting with his brother.... very normal!

Neil had to work today, so I took the boys to the lovely Longwood Estate for an old-fashioned Country Fair hosted by the Town of Brookhaven (see photo with eagle above). We had a beautiful day full of fun. When we first walked in we were amazed to see a familiar face from the floors of StonyBrook, a cancer patient named Jen and her parents. This was the first time I have seen all of her. For over a year she was covered up or hiding in a dark room. She was very photo and noise sensitive. Her poor parents would often have to sit just outside her room as she couldn't tolerate even having people near sometimes. What a difference now, she was smiling and friendly, selling buttons she made and bracelets for Make A Wish. I bought a button for each boy and they proudly wore them all day.

They didn't much care for the civil and revolutionary war reinactments with their loud gunfire, but loved petting the rescued greyhounds and going on pony rides. They also enjoyed the demonstrating in the "fire house" from the Ridge Fire Department. They fill the room with smoke and have us crawl out after giving some great safty advice. One of the best parts of that is they have one of the firemen in full gear with face mask on, so if the kids ever have to be rescued in a fire they will recognize the fireman.


Hanging out on the Fire Truck!

The boys also played lots of old-fashioned games, and I bought them dream catchers to catch those bad dreams. Thanks for the suggestion Dr. Prakash! Kendall's been sleeping much better. He really seems like himself. He's been taking his meds like a champ. I found a little bit of whipped cream to wet the capsules down and give them a bit of flavor really seems to help. We are hopeful that next week's scans will show no progression and he will be able to continue this protocol.

Christi Thomas and her beautiful family still need your prayers. She is have an extremely difficult time. I can't even tell you how upsetting it is to read about this exceptional child being in pain.

Penelope London is managing to go to school at least a little, even though there are obvious signs of disease progression. She is a very strong and brave little girl and her wonderful parents are trying a last-ditch effort to save her with an extremely experimental medication. This is another wonderful family that could use your prayers and support.

Please don't forget beautiful Erin, who also bravely attends school even while Hospice comes three days a week. These children are just so precious.

Lastly, please give some love and support to a very sweet little boy Russell Lee and his family. They were recently devastated to find his leukemia has relapsed. Russell is one of the wonderful children we met at the Morgan Center. I'm sure your prayers and kind thoughts will be appreciated.

I'm going to post a message on how you can help soon. But for now, get out there and give blood,and consider becoming a marrow doner. Children like Russell need bone marrow transplants, and if the family doesn't match they require doner marrow. Visit The National Marrow Donor Program for more information. You never know when you may get a chance to save a life.

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Thursday, September 7, 2006 9:52 PM CDT

First of all, please say a prayer for a very brave, bright and beautiful young warrior, Christi Thomas and her sweet family. The Thomas Team has been fighting this horrible disease for over four years, and are facing the difficult decision to switch over to palliative care now. Christi has endured so much. I had the honor of meeting her, and her parents, Shayne and Angela, and her adorable and sweet sister Shayla during some of my trips to CHOP. They are always such a loving and supportive family, and Christi is so very special to a lot of us. My heart breaks for them and I grieve along with them. She is so smart and and a talented artist and dancer. When you see these beautiful children with such great potential and such a strong will to live cut down before they even get a chance.... it is just unthinkable.

Also, send some love and prayers to two other very brave little girls: Penelope Londonand Erin. They are both also facing the end of treatment.

As for Kendall, he is about the same, maybe a tad better or just adjusting better. He still has little appetite, but he eats more readily when encouraged these last couple of days. He actually ate a whole slice of pizza and several pieces of mango with whipped cream last night, among other things. He slept all night with no complaints of pain. He is active for several hours at a stretch, then needs to rest or sleep. He still rubs his lower belly sometimes, and that makes me nervous, but I almost imagine it is less often and less intently. Today he was less hunched over I'm sure. I've started this round of chemo, and we still plan to rescan next Tuesday and Wednesday.

I'm sorry for all the sad news today. I'm just feel so bad for these beautiful families. Maybe I'll work out a "What you can do to help" post later this weekend.

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Saturday, September 2, 2006 9:08 PM CDT

Kendall seems to be getting over his virus/bladder infection or whatever it was, but it sure is taking some time! I got worried on Wednesday night because he was listless and tired with dry lips and sunken eyes, so I took him to Urgent Care at StonyBrook. Mom said he hardly ate and she had to force him to drink. I was positive he was dehydrated, so I stopped home to pack a bag for the hospital figuring we'd be staying. On the way I gave Kendall a Slurpee and he drank half while waiting for me in the car with Neil. When we got to Urgent Care, that little monkey actually skipped out of his stroller and down the hall, and was singing silly songs and dancing. There was no indication of dehydration in the urine test, no fever, and he layed there peacefully watching a movie while the doctor gave him a very thorough belly feel. Since then he's improved slowly each day. He still isn't eating with his normal enthusiam, but he will eat when encouraged/bribed and he is drinking better. At least he is now running and playing and being silly with his brother again.

I spent some time taking photo clips off the next video from Disney we have, and figured I'll post another trip Journal now. The photos can be viewed at:

http://s101.photobucket.com/albums/m66/Gennet_2006/Magic%20Kingdom/

The read only password to view this album is: warrior

I called the new subalbum Magic Kingdom. Because they are video captures the quality isn't great.

++++++++++++++++++++++++++++++++++++++++++++++

July 1, 2006

Learning from our experiences at SeaWorld, we decided not to try another park early in the morning. After breakfast, we talked with the park pointers who gave us some good information on which which parks to do and when. We decided to devote a whole day to animal kingdom, and to do MGM followed by Epcot for fireworks on the Fourth. Today we did the kids pillows and Kendall's wish star, then spent the hot part of the day in the pool. We figured the boys would nap in the car on the way to the Magic Kingdom.

The wish star is cool. You write Kendall's name on it and place it in the fairy box. You can see the movie of it traveling through the walls, then it gets put on the ceiling to join the other thousands of stars for kids who have been here. The pillows are fun. They have a machine that they push buttons on to choose a design, add "wishes" and "sweet dreams", and it has all sorts of lights and levers and bubbles come out, then they pop out a pillow just for your kid. Zachary choose the "Guess What" button for pillow design, which can be anything. In his case it was a pretty purple design, with the world angel writen all over it. He loves it!. I couldn't get a good photo of him with the pillow as he would not stand still. Kendall hit "Boy" design. There was no photo of what the design would look like, just a picture of a boy. His pillow had frogs in different space outfits and spaceships, which was just amazing really. Many of you know Kendall LOVES frogs. His favorite cuddle pet is "Mr. Cuddle Frog", who he has had since birth (there are two of them actually, one to wash, one to hold). He has many frog cloths and toys. And F.R.O.G among the more religious christians stands for Forever Rely on God. I can't help but feel this was a sign of some sorts. This place really is magic.

Here is Kendall hugging the stuffing's out of his pillow:



I couldn't get Zachary to stand still with his long enough to capture the photo.


The pool was fantastic and a good idea for the afternoon heat. We ran through sprinklers and had a blast, then swam in a gorgeous pool, with very comfortable water. I gave the kids their goggles, and Kendall learned how to dunk under the water without getting it in his mouth or nose. He had great fun doing it over and over, holding his breath for longer each time. Scared Noni half to death! But he was having a great time and very proud. Zach tried once, got some water in his mouth, and decided he was a surface dweller for now, but he did do a fantastic impression of a dolphin swimming backwards! He really loved those dolphin shows at SeaWorld.



We rinsed off, changed and headed for Magic Kingdom. First we got tied up at Walmart where we went to get the tickets for Mom and Fritz. The machine was not working right and it took a few minutes to get someone in to manually enter the tickets. By the time we got to the park we were hungry, and decided to find food first. But at Magic Kingdom, it isn't an easy trip from the parking lot to the park! After you park, you take a bus to the ticket gate. Then you can catch the ferry or the tram. We choose tram. Ours broke before we even got on. So typical! We waited a good 20 minutes before they got another one. Then you have to enter your tickets into a machine. The line we were on had technical difficulties and more delays, but we eventually got to the park, got our strollers, and wen to find food. It was after 4:30 p.m.! We ate at Cosmic Ray's in Tomorrowland and it was a great choice. The prices were reasonable, the place was clean and a cute place to eat for the boys (a spaceship theme), and they had good food.... chicken and ribs! We decided to go on two of the rides in Tomorrowland. The first ride was Buzz Lightyear, and what a hit it was!!!!! The fast-track pass we had made this so much easier. We bypassed the long lines, and were on the ride in just a few minutes (the wait on the regular line was about 35-45 minutes). The ride was fantastic, half ride, half video game....with great graphics. You shoot targets on the enemies with your lazer cannon, and the car you are in can spin all the way around, so it is really cool. The visual effects were awesome. impossible to describe. We got off, and the boys wanted to do it again, so we did. We got great photos on one of the many trips through the machine, so I ordered some copies.

We then made the mistake of doing the Lilo and Stitch ride. It sounded like it would be the same kind of thing in the description, and even though it said it may be frightening to younger children, my kids don't scare easily and I figured it would be OK. It wasn't. Horrible ride. It is very stupid first of all. You listen to this long spheel about how you are to help with the prisoner transport center, then it acts like there is an emergency, then you get herded to an area where you are strapped into a seat with a shoulder harness and a HUGE Stitch comes out and does some disgusting and obnoxcious things, like spit water at you, scream in your face, burp (you feel the air and stench). Much of it is pitch black with flashing lights and flapping things. Kendall screamed pitifully, and because we had no idea of what was coming next or if the ride was going to move or something, we had no way to let him out of his seat. When it was finally over, both boys were shaking and crying, and we all HATED this ride. I will write a letter. There should be some way to take the kids off if they are scared. Also, it is just stupid. I can't imagine anyone enjoying it.

We followed that horror with another ride on Buzz lightyear, then off to Frontierland for Splash mountain. A great ride. The 50foot drop is awesome, and the whole thing is great, with cute animations from Song of the South, (Brer Rabbit, fox, bear... etc). Great music too. The boys LOVED it. We got splashed pretty good. I don't think Mom and Fritz enjoyed it as much though. Then we went off to Big Thunder Mountain. Also a great ride.. basically a runaway train rollercoaster through an old mine, and in and out of a mountain. Lots of fun, and our fastpass became of great use here too. We talked Mom and Fritz into coming on this one after we went, and Mom screamed bloody murder the whole time, even though it isn't that scary (no big drops, mostly just fast turns). Fritz was worried Kendall would fall out, but otherwise liked it. We did Splash Mountain again and now it was time for the parade. We were able to see much of the parade, with huge lighted animals from the ride! It was spectactular. That place is beuatiful at night. The fireworks show was awesome, and the boys spent it swinging their lighted swords around like crazy, as if fighting the lights! Lots of fun. Then we went on It A small World, becuase you HAVE to. Ugh! Zachary's opinion -the boat is too slow... lets do Buzz lightyear again!. So we did until it was time to leave.

It was a long ride back to the car, and I was glad I brought a change of cloths and pull ups for the boys. We dressed them and they fell asleep and stayed asleep. We had forgotten to eat dinner, so we dropped them and Fritz back at the villa, then mom, Neil and I went to Walmart for food. We got some cereal and stuff, and ate at 1:30 a.m! All in all, an exhausiting day, but a lot of fun.

Please continue to keep these dear brave fighters in your prayers: Penelope London, Christi Thomas, and Erin. They are all having a tough time right now after many years of treatment.

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Tuesday, August 29, 2006 7:47 AM CDT

It is amazing how quickly things can change in our house! Saturday morning when I posted my last post was uneventful. The boys had a decent breakfast, not much for lunch, just some apples and carrots with penut butter, but the did have some popcorn chicken with Neil a bit later. We played tag in the yard for a bit, the Kendall said he was tired and he took a nap when we went inside. I went to work, and he woke up in a good mood happy to go to dinner with Jessica, Jim and Kathy. He threw up at dinner and Neil brought them home, then he started to complain of pain in the bladder area. He slept fitfully, complaining of pain until I gave him some tyelnol. He woke up fine and cheerful in the morning, but complaining again of pain as the day went on, and not eating or drinking much. I had to really push him to get him to even drink. In retrospect, there were two or three times over the last couple of weeks where he complained of mild pain in the bladder. My mom also saw blood in the urine one day last week, but his UA and culture from last Wednesday were OK... just trace blood. As the day went on, with a little Tylenol he felt better. But Monday morning brought even more pain and discomfort, and a fever had started. So we spent the morning in clinic, with IV antibiotics, fluids, and moved to Motrin for fever and pain control, then came home as his counts are good and he should be able to fight off an infecton. Today he seems a bit better, though he was up at 3 am with fever again. I'll be home with him pushing the fluids and trying to get him to eat. His blood and urine tests did show he was a bit dehydrated again and he's showing signs of not eating enough. Some of that may have been from the vomiting, he has had several bouts of it over the last couple of weeks, mostly in the car.


Photos of the boys can be seen at:

http://s101.photobucket.com/albums/m66/Gennet_2006

The read only password to view this album is: warrior


Please continue to keep these dear brave fighters in your prayers: Penelope London, Christi Thomas, and Erin. They are all having a tough time right now after many years of treatment.

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Saturday, August 26, 2006 9:20 AM CDT

Well, we had an exciting week! Kendall's been active, happy and mostly feeling great. He has developed car-sickness and some breakthrough episodes of nausea nad vomiting, but we will be adjusting the Zofran a bit and hope that will fix the problem.

Last weekend I watched my new newphew Nicholas so my mom could get a little break. He is one-month old and cute as a button! We went shoping, then off to his first party! We went to see our good friends Jim, Kathy and their adorable red-head Jessica. The boys have missed Jessica a lot as due to various illnesses they haven't been able to get together. They played in her yard and we brought our bouncy hut, then they tore up Kathy's lovely home. Kendall had to take his chemo, and he took it like a champ with only a bit of spitting up. However, we had to borrow a tee shirt, and he choose one of Jessica's pretty horsey shirts. This started the boys in dress-up mode, and they proceeded to put on Jessica's clothing. Zachary was decked out in her nightgown with her bathing suit on top, Jessica had a princess dress with cat ears. Kendall... well lets just say he was unique too!:



Afer we got them back into their own clothes, we all took Nicholas to his first restaurant, Pizzaria Uno! The boys loved their pizza and had a great time. Kendall made up for some lost weight by eating the largest piece of cheesecake covered with whipped cream all by himself (that was after most of a pizza and chocolate milk!). I don't know how he held it all down, but he did. The baby slept happily through most of it, but woke up to be fed at the end. He he is very content in his carseat:



The next day we took Nicholas on his first trip to the boys' favorite park, the Holtzville Park Zoo! You can see a cute photo of the three of them above. Nicholas actually slept through the whole thing somehow! Some photos from this weekend can be seen at:

http://s101.photobucket.com/albums/m66/Gennet_2006/Aug 19-20 2006/

The read only password to view this album is: warrior

Our trip to CHOP was fairly routine. I talked with Dr. Maris about future plans. He would like to keep Kendall on the current regime for about a year (we started back in April I think). Of course, if there is any progression or if he cannot tolerate the meds, that would change. He is mildly concerned about the increase in vomiting and some trace blood in the urine, and there was one day of more obvious blood toward the end of the cycle. However, Kendall feels great overall and his appetite returns quickly at the end of each cycle. It was decided that we would do the next two as planned, but to spread the Zofran out a bit and continue it for a day or two after the end of the cycle to cut down on the nausea. I was instructed to get him to drink more to combat the urinary irritation, and we will test the urine weekly. If he shows signs of not tolerating the next round we will do the scans sooner and maybe try him on something else. He is only going to do an MIBG scan this time, as the CT has remained stable and he isn't showing any phyiscial signs or signs in the blood. After about a year of this treatment, we will probably move on to a biological agent (antibodies or vaccine study).

The boys had a great time at the Ronald McDonald house as usual and we were grateful to get a room. They are renovating the kitchen, so dinner was barbecue, but it was yummy! Neil came later that night (he had to work in the day:( ) and played with the boys for a while. As you can see from the photos, dress-up was again on the adgenda!

On Thursday we went to Sesame Place thanks to the lovely people at Give Kids the World and their "World Passport"! We were a bit worried about the weather reports, but decided to go anyway, and are so glad we did! The boys had a great time! It is a nice park without too many hills, and the raft rides are great. They also loved the tube slides. Neil flipped off the back of one and temporarily lost his glasses, and Zachary went flying off the front of mine head-first into the water! Good thing they post life-guards there! They loved the moster maze, but found the net climbing a bit much, mostly because of the older kids who were a bit noisy. They just loved seeing all the characters, though we didn't wait on the long lines for photos. It wasn't very hot, so Kendall got a bit cold and wanted to be done with the water. I changed them into dry clothes, and they had a great time riding the Vapor Trail.... a very fast and twisty rollercoater. We went on that about 5 times, until Kendall got to ride in the front car. It was a great day and we are so grateful for the people who made it happen.

You can see photos of the boys playing at the Ronald McDonald house and Sesame place here:

http://s101.photobucket.com/albums/m66/Gennet_2006/Sesame Place/

The read only password to view this album is: warrior

There are also a couple of pictures from Holtzville Park in the beginning.

My mom is moving any day now, and after they settle down, I will find a spot for our lemonade stand. I have a table now, and may be able to borrow a shade. We need a sign, a location, and the lemonade supplies, then we are good to go! I'm hoping for a busy weekend in September. I want to make sure to advertize well, so I will need time to contact local papers and radio stations.

Please keep these dear brave fighters in your prayers: Penelope London, Christi Thomas, and Erin. They are all having a tough time right now after many years of treatment.

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Wednesday, August 23, 2006 1:30 AM CDT

I know, it's been ages and no updates! We've been busy having a fun summer again! Last week we had family day at Sunrise DayCamp, and on Friday was the last day of camp. The family day was great, with a mini day of camp, and a fantastic luncheon catered by Presidental Caterers at the Friedberg JCC (they run this charitable camp for children with cancer!). The caterer donated all their time and food and had a great bar-be-cue, a fruit station with a chocolate fountain (a big hit for my kids!), sandwich and salad stations and a hot food/pasta bar. The potato pancakes and kinishes were very yummy, and they even had trays of shish kabobs and pigs in a blanket they passed around! They had a Karaoke setup, and my boys sang a beautiful rendition of "How Much is that Doggie in the Window":



There was a mini carnival too, with carnival games like the ring toss on the bottles and baseballs knocking down the clowns. There were TONS of snacks and food, even zeppoles and cotton candy! They showed a video of the kids at camp, and gave out raffle prizes. We left with all sorts of toys and prizes and the boys were just so thrilled. They danced and had a fantastic time. Thanks to all those wonderful and generous people who contributed to the camp and this party. It was so great seeing these kids just having a chance to be kids. Some new photos can be seen on at:

http://s101.photobucket.com/albums/m66/Gennet_2006/Sunrise DayCamp/

The password is: warrior.

I'm off to CHOP for a visit and we plan to follow that up with a trip to Sesame Place! We can't wait to go and the boys are very excited!

Thank you all for checking in on Kendall.

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Thursday, August 3, 2006 7:11 AM CDT

I know, FINALLY an update! We've been busy and having a ball. First of all, we need to welcome the boy's new cousin, Nicholas Eligio into the family! He is a beautiful little boy born on 7/21/06 at 7 lbs, 4 oz. The boys just love him. I only have one photo right now, but I'll get some posted with the boys as soon as I can!




The boys had their first dental visit and it went great! They were sooo cute. They sat nicely for the dentist and followed all the instructions. He put sunglasses on them with superheros to keep the light out, and played videos in the room! They actually enjoyed it and have NO CAVITIES!

Kendall is doing well, I haven't got his counts yet this week, but he has gained weight... up to 16.9k! He feels great and both boys have a ball at Sunrise DayCamp 3 days a week!. They also enjoyed seeing many of their old friends from the Morgan Center at a summer barbecue hosted by the Harison and Ben Goldstein and their family in their new home! They have a beautiful home and everyone had fun(Thanks Danielle!). It was great for me to see all the moms again too.

OK, here is day two of our Disney Trip journal, followed by.... a photo strip from SeaWorld! (I must apologize to mom in advance for the photo of her soaked by Shamoo.... it was just too funny to leave out!). Some of the photos are poor quality because they were captured off video. For those who just don't get enough of my kids, you can see more Disney photos at: http://s101.photobucket.com/albums/m66/Gennet_2006/GKTW2006/
(the password is warrior)


6/30/06

Today was SeaWorld! We got there early after a nice buffet breakfast. It was absolutely fantastic! The boys fed and pet dolphins, loved the underwater viewing areas, and enjoyed the misting tents. The dolphin show was unbelieable! They had dolphins, acrobats, divers and birds. Those trained birds flew so close to our heads we could feel the wind from their wings! It was stunning. Only bad part was we didn't get splashed and it was SOOO hot! They were beat after that, so we left for lunch at Black Angus....great burgers, but a bit slow service. The boys got a good nap on the way. We went back and saw the baby dolphins, very cute!. The penguins were also fantastic.. you go through an underwater viewing area, and the boys had a ball playing in the sprinkers! Then we went to see Shamoo. The boys really wanted to be splashed, so we sat right up front in the "Soak Zone". For most of the show we didn't even get damp. It was cool to see the baby swimming with her mom! These beautiful animals put on quite a show and we thought it was pretty much over. Kendall was mad because he didn't get splashed. Then they come out and do the Shamoo Cheer. I thought the other whales were large, but Shamoo was HUGE! He Dwarfed them! To say he soaked us really doesn't quite convey the level of wetness. We got splashed over and over. It was salty, but spectacular, and the boys were THRILLED! They were cold, but so very very excited. We then let the boys do the bungie trampoline. Boy was that fun! Then I went with boys to see the sharks... Neil, Mom and Fritz went to the Anheiser-Busch brewery for a beer.

It was a long day, and when we got back we had to do Kendall's meds.. it was a bit of a problem as he was so tired, but eventually it got done. Overall, a great day!

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Sunday, July 23, 2006 1:58 PM CDT

Well, the boys are loving Sunrise DayCamp and are having a great time! They go three days a week from 10-3 and do all sorts of different things, like play soccer, minature golf, and on Friday they went Hiking for Friendly Bears! (found some pawprints and a honey tree, but strangely... no actual bears!). They are also getting better at swimming, and in general feel good. Kendall started his fifth round of this chemo without incident.

Now, as promised, I'm finally getting some photos of our Disney trip up! I have created a Photobucket account where I can link to so people can view them. By next week I'll have figured out the linking feature, and maybe even a slide show or strip will appear on my site. These are very simple and easy tasks, so I must find a way to complicate them! The home picture was taken at Give Kids The World, which is the resort we stayed at in Disney. Their mascots are two bunnies named Mayor Clayton and Miss Mary. Very cute! It was a really "magical" place to stay to say the least. I have journals from each day of our trip, and I will now post a condensed version of our first day. Future days to come as I get the photos together. I have a lot of them on my mom's camera and on the disks they gave us that I haven't uploaded yet. These so far are just from my camera which I didn't use much. I am hoping to be able to post some of the video clips at some point as well, but need to get some editing software for that. Here is our first day in Florida!:



June 29, 2006

The first day of our Make A Wish trip was great. The limo was there bright and early, and we had an easy ride to McArthur Airport. The boys were so excited to be in a limo! The boys did great on their first plane ride. Kendall sat and stared out the window the whole time. He was so excited. He said he didn't like going through the "smoke" (clouds)though. But they were both very good on the plane. They played their gameboys quietly, then fell alseep on either side of Neil, who was asleep almost as soon as we boarded. Fritz took Zachary's gameboy, and I did my best to teach hm to play the Chicken Little game. He gets an A for effort anyway!. We had no problems finding our greeters, who held up a HUGE sign that said Give Kids the World welcomes Kendall Jackson!. They gave us lots of great tips and wonderful diretions. We were delayed in the airport for a bit waiting for the mini van, but we got here OK. The resort is just beautiful! It was after 2pm by this time, so we decided to spend the day there and just get used to things, then go to the parks in the morning. We had sandwiches and ice cream (all this was included!). Then we all went for a rideon the Merry-go-round!

The boys loved the dancing (the Temecula Danncers were here from California to put on a show. One dancer was a previous guest here, and a cancer survivor! They also got to see Santa and have pictures! And there was snow! Every Thursday is Christmas here, and they make snow and have Santa come to give out gifts. Here we are in the snow... no, that isn't dandruff!




Neil and I went to the orientation while everyone got dinner at the GingerBread House (very cute!). Later the boys played with one of the mascots, Miss Mary in the main house!:



I managed to fit Kendall's chemo in there somewhere, but it was pretty late. We were exhausted when we finally fell alseep!

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Thursday, July 13, 2006 7:40 AM CDT

Yes, finally a photo from our Disney trip! (see above). As you can see, the boys were excited to go on the plane. That one was at McArthur Airport before we boarded. Obviously, cleanliness is next to impossible with four-year-olds, but you can overlook Kendall's shirt and see two very excited boys! I will be posting some trip diaries in a few days, and will link to a site with more photos now that I was able to get them on my computer (I still need a new one, but for now we are OK).

But the really exciting news comes from our trip to CHOP! Kendall's CT scan is stable, with the very tiny mass near the aorta still seen, maybe slightly smaller again, but it is too small to cause an immediate problems. However, Kendall's MIBG scan was NEGATIVE!!! The chemo's he was on are considered to be successful if they are holding the disease stable. The fact that he is actually showing improvement on them is amazing. You could see how excited the doctors were. He is at a slightly higher dose than would be if they gave it injectably, and it seems to be working really well. He has no side effects of any concern (his counts drop slightly about 8-14 days after the cycle, then come right back). He has needed no transfusions, no injections to boost immunity, and has had no diarrhea. It is a little bit of a pain for him to have to take so many capsuls and pills, but they are not every day, and it only takes a few minutes out of our day. He can have normal activity the rest of the time. He was on these meds the entire trip to Disney, and it didn't slow him down in the least! For that fact, he has more energy than all of us put together. We couldn't be happier.

We had a great time at the Philly Zoo after clinic, though it was pretty hot. (Many thanks to Helen at PRMH and Ann Roberts!) Kendall is due to start his next round on Monday if his counts are sufficiently recovered. Many thanks to everyone for your prayers and good wishes!

Blood supplies are low on Long Island. Even though Kendall hasn't needed any, there are many people who rely on the gift of life. Get out and give. You can contact the New York Blood Center: www.nybloodcenter.org, or StonyBrook Hospital: www.stonybrookhospital.com to schedule an appointment. Thank you to all those donating angels!

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Monday, July 10, 2006 10:25 PM CDT

No, we did not get lost in Space Mountain, though our flight home was starting to feel that way! We got back from Disney after midnight on Wednesday, and I had to work Thursday and Friday. The boys had a fantastic time, and the s all survived! Actually, we had a lot of fun too. I'll update fully with links to photos when we get back from CHOP. We are here for a few days for scans. Keep Kendall in your prayers.

My computer is flaking out bigtime, and probably needs to be replaced, so bear with me on the updates. In the meantime, Happy Summer everyone!

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Monday, June 26, 2006 11:07 PM CDT

All is well and we are getting ready for our Make A Wish trip to Disney. I must thank the lovely ladies at Make a Wish for being so kind and patient. They thought of everything, and were very flexible and accomodating! Here's a photo of them taken by Kendall!



Allison and Joann, our Wish Angels!

We had a great time at Dutch Wonderland. I have TONS of pictures. I will upload them when I get back to one of those photoshare sites.

I have to go for now, but wanted to take the time to remind everyone that during the summer the blood donations slip drastically. Kendall would not be here today if it wasn't for the kindness of Strangers who took time from their busy schedules to give a little blood for him. So get out there and roll up those sleeves!

Thank you to everyone who continues to check up on Kendall. Your caring and concern mean so much to us.

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Sunday, June 18, 2006 11:50 PM CDT

I'm tired after a long day, so this will be short. I'll update and post some photos later in the week.

Our trip to Dutch Wonderland was again affected by my usual travel challenges. But we arrived there safe and sound after a long drive, and made it home OK, and that's all that counts. The boys had a ball at Dutch Wonderland! Even better than last time in some ways. They loved the water-sprinkler area, and played there for quite a while with our good friends Michele and Tom's little boy Connor. It was his first time there, and though I know it was tiring and a bit overwhelming maybe, he also seemed to have a great time. We just love that park and hope to make it back there before the summer is over.

I have the Make A Wish people coming tomorrow with the things we need for our trip. We're missing my dad and Neil's dad today, but we are happy they both had a chance to meet their grandchildren and enjoy some time with them. Dutch Wonderland was a good distraction and it was great to spend the day together as a family doing something fun. I need to sleep now, but want to wish all the Dad's out there a Happy Father's Day.

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Saturday, June 3, 2006 11:13 PM CDT

Well, we've had a long and harrowing week, but we are just so happy that Kendall is able to continue on this same regime for a little longer! As I said, Kendall scans are basically stable to slightly improved. At this stage, that is good enough. One of the first things Dr. Maris asked me was if Kendall was missing a significant amount of the irinotecan due to the nasty taste of it (this was before he looked at the scans... I had indicated on our log sheets that he does throw up some of the irino). I explained how hard it was to get it into him, but that it was just because of the bad taste. Kendall tries hard to cooperate and take the medication, but he can barely choke it down. He suggested we try putting it in gel caps and had the nurse order some for us to try. The plan worked great, and Kendall is much happier swallowing the capsuls! He can take a pretty big capsule (we tested a couple of them), but we go down one size and give him three medium-sized ones. I fear that if I put it in too large a capsule he may accidentally bite it or hold it in his mouth too long, and end up tasting the meds. I have no doubt that would be traumatic for him! We are hopeful that getting the full dose of the medication will produce even more improvement.

We ended up spending a lot of time waiting for scans and results this time, probably due to the holiday weekend condensing their week. I didn't get to take the boys to the Zoo. It's OK, we'll save that trip for another time. Instead, on Wednesday we took them to Fairmount Park, and the Smith Memorial Playground.... home of the Giant Slide!!! (see photo at top of page of the boys on the slide). It was very warm out, but the boys had a blast at this park! You have to walk up a series of ramps to get to the top of the slide:



Once at the top, there is a covered building, so the slide stayed pretty cool, even though it was hot out. Even Mom an I enjoyed this slide! (Sorry, no pictures of me this time, she just isn't used to my camera):



The park also boasts several gyro-thingies and a nice soft play surface. These were a bit of a challenge for my boys, but they had a great time on them!:







We had a very long ride back on Thursday night, through the rain, with a one bridge closing and another (draw bridge) opening up on us! So we ended up starting this round of chemo very late, and at rest stops! But the next round can be sent via mail, so we don't have to go back until July! We will be enjoying this break immensely!

I must get some sleep now, as tomorrow is big day for us. We'll be going to the John Theissen Children's Foundation Day to Remember. It is sort of a big carnival for children with cancer and their families. Last year was fun, this year looks to be even better! It is being held at a day camp in Merrick... a vast improvement over the parking lot of a local deli from last year! This may be a good organization to support with your GoodSearch searching too!

Please remember Christi Thomas and her dear mom and sister (Angela and Shayla). They are still at CHOP and hoping to get home in time for Christi's dance recital. She is doing well it seems, but still not out of the woods. Also, say a pray for the ever so cute and brave Carter Finger. They were also getting scaned this week, but he has shown some progression, so they seek new treatment options. Carter and his friend Neil were so adorable and sweet, and helped entertain Kendall in clinic and at the RMH, along with his beautiful older sister Mariah. They are a wonderful family, and we were so hoping he'd get to stay on his current treatment a bit longer, as he was feeling really great on it. Along with them I met a truly fantastic woman named Gretchen (little Neil's mom), who lost her own son to this horrible disease about two years ago after a valliant 14 month battle, but still had the courage and strength to come with Rhonda and support her. It was great meeting these wonderful people, and I only wish it were under better circumstances.

Lastly, please also send some love and prayers to my online friend Amy. Her son, Benny Petz, has been battling NB for the last two-and-a-half years. He is currently in a lot of pain, and it is difficult to control as he is allergic to many pain meds. Please pray that the doctors can find a way to make this very sweet little boy comfortable.

I know it is difficult to read about bad news and children in pain and suffering from this disease. But this is the reality of children's cancer, and it is something I face every day and week. Most of the time I don't dwell on these things, as I try to provide Kendall with the best quality of life possible. But every once in a while it really gets to me. I'm tired now, but I'll post some information for those who are interested in ways to help these beautiful children. For now, the best thing you can do is give blood and/or platelets. It is truly the give of yourself, and yet a truly selfless gift. These children rely on blood and blood products for their basic survival.

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Thursday, June 1, 2006 11:45 PM CDT

Just a quick update to let everyone know Kendall's MIBG (nuclear scan) was stable, and the CT showed slight improvement! The original tumor shrank a little more. We will stay with the same treatment, irinotecan, temozolomide and cefixime for two more cycles and rescan on July 11-12th. After discussing some of the problems we were having getting that nasty-tasting irinotecan into Kendall orally (it is meant to be an injectable... so it tastes really foul!), Dr. Maris agreed that we should try putting it in gelcaps. The only complication is I would have to fill them myself right before he takes them (you have between 2-5 minutes before they disintegrate).

We had a long and harrowing ride home (I'll update tomorrow with more details and some photos from our stay), and Kendall had to take some of his chemo's while we were still on the road, but it went well. It was after midnight when we got to my mom's house (we left at around 7:30 pm... it is normally a 2.5-3 hour drive). I still had to get the irinotecan into that poor sleepy kid, and the gelcaps worked like a charm. He didn't feel like doing it, but with a little insistance and encouragement, he swalled all three capusles without incident, with just a little cranberry juice. He was back to sleep within minutes! This is so much easier. As long as he doesn't chew the capusles, we'll be fine!

I have to get up to work in the morining, so I'm off for now. I'll update tomorrow.

(p.s. We miss you Mimi!)

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Wednesday, May 31, 2006

Just a quick update. Kendall's fevers have left us and he is much improved and feeling fiesty! Tuesday was a bit rough, but today he is all happiness and cheer, and playing hard. He's back to eating better and has only lost about a pound, which isn't much considering how little he ate the last few days. I have no results as of yet...will get all tomorrow in clinic after his nuclear scan, and I'll post an update tomorrow night.


Saturday, May 27, 2006 11:29 PM CDT

As you can see, I'm learning how to change the font colors and sizes and playing around with the webpage. One would think I had nothing better to do! (Actually, I got a cheat sheet that tells the simple codes to use... it is easier than I thought!)

Our trip to Dutch Wonderland has been postponed:( I am over the initial depression and anger and have moved on to replaning the trip on Father's Day weekend. Poor Kendall was not feeling well at school yesterday, though he seemed fine in the morning, and even ate a good breakfast. According to my mom he was difficult and cranky, and soon fell alseep in her arms. He didn't feel warm then, but about an hour later he spiked a fever of 102. We took him to StonyBrook's Urgent Care (thereby avoiding the dreaded holiday weekend ER visit). His counts were good (ANC of over 3k.... it was 1900 on Wednesday... obviously he was responding to the infection), so they drew blood cultures and sent us home accessed after a bolus of IV antibiotics and some Motrin.

Kendall continued to be feverish throughout the night and next morning, but they were controlled with Motrin and Tylenol. He really felt pretty good this morning, and was up playing soccer and very active. He didn't eat much though, and he has lost a bit of weight again. I was surprised when he walked cheerfully back into clinic around 3pm, laughing and playful, with a 103.1 fever. I had given him some Tyelnol at 9:30 am, and his temp then was 102. It seemed better and he as feeling so well I didn't give him any more. They gave him a dose of Motrin in the clinic, another bolus of IV antibiotics and sent us home to watch him closely. Nothing grew on the cultures yet, but we will call and check tomorrow. If anything grows, we will end up inpatient, at least for a few days. But we don't expect that to happen. Kendall ate a bit for dinner and drank a lot of milk, but still doesn't have much appetite in general.

I wanted to take a moment to alert people to a method of raising money for a favorite chariety while searching the internet. You just go to www.goodsearch.com and every search you do will generate a few cents for your favorite chariety. I chose Children's Neuroblastoma Cancer Foundation as my charity of choice. They support research directly related to NB, including some of the NANT studies Kendall has been on, among other things. I am also fond of Alex's Lemonade Stand, which supports research for all childhood cancers. Searching with Goodsearch won't cost you anything, and they use the same search engine as Yahoo. It only generates a few cents per search, but these little bits add up. I made them my home page.

Some people have asked me about the American Cancer Society. While I'm not against supporting them, you should know that very little of their funds goes towards cancer research, and almost nothing towards childhood cancer. It is hard to get the facts from the organization, as they do not like to admit this, but research by some concerned parents revealed the following from their 2002-2003 funding chart:

Donations to American Cancer Society -- $1 billion
Amount for cancer research -- $132 million
Amount for pediatric cancer research -- $7 million
Amount for Neuroblastoma -$0

A good article on the subject was writen by Bruce Prescott, a man who lost his six year old daughter to neuroblastoma, and also has a wife battling breast cancer. So he sees this issue from both sides. Relay for Life article.

It is not that I have anything against giving to adult cancer research, as long as that is your goal. Many people are shocked to learn so little goes to childhood cancer from this huge organization, although they use children all the time in their advertising and fundraising. They encourage schools to support a child with cancer through their Relay for Life fundraiser, and then hardly anything goes to the child's cancer! They won't even allow you to choose to donate specifically to childhood cancer....all their funds are divided as they see fit.

To be fair, childhood cancer is more rare than most of the adult cancers they are pouring money into, but because of that, childhood cancers get less from the government too. Researchers rely heavily on these private funds. Childhood cancer is very different from adult diseases, as children are still growing. Most cancer therapies are aimed at affecting the fastest growing cells. Children metabolize these drugs different, and respond differently. You may be surprised to find out that almost none of the treatments our children go through were designed specifically for them. The researchers are forced to use drugs for adult cancers and see what works, because drug companies also aren't motivated to design drugs for children. I'll step down from my soapbox for now.

I guess I'm a bit oversensitive right now, with it being Memorial Day Weekend again. Kendall was diagnosed on this same weekend in 2004. I can't even begin to describe how devastating that day was. Today is I was hoping to be somewhere else, but truly I am pretty happy I have both my boys here right now. Even a sick and feverish Kendall is a precious gift.

I'll be working on a Lemonade Stand of our own this summer... sometime after our Disney Trip. The boys want to help find a cure too. They love the story of Alex and her lemonade stand (thanks Liz and Jay!).

Keep up those prayers for the beautiful and very brave Christi Thomas!. She has done well with her treatment, but the most difficult and dangerous time is still to come.

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Monday, May 22, 2006 10:42 PM CDT

We had a fun weekend. On Saturday, I took the boys to Benner's Farm for the Barnyard Babies weekend (they let the kids hold and feed some of the baby animals... there is also a great tire swing!). The weather was on the cold side, but that is OK. We don't like the farm when it is too hot! Zachary and Kendall held the bunnies and ducklings nervously, but they had a great time:



After this we dug up my front planting bed (yes, again) and pushed all the rocks into a pile. My intention was to head out early on Sunday morning and get some dirt so I could fill it in and then maybe plant a new shrub or something on Wednesday. But I had promised the boys I'd take them to the Aquarium, and by the time we got up and Kendall got his medicine, it was getting late. So we skipped the dirt and headed to Riverhead.

That morning Zachary asked me to make him a pirate. He does this every time he sees his bandana (it was in his sock draw). Of course, seeing Zachary with a bandana tied on his head, Kendall wanted one too. Zachary took his off about two minutes later, but Kendall insisted on keep his on (much to Zachary's dismay!). I'm all for covering his head outside to protect it from the sun, so he got to keep it. He wore that bandana all day. I had returned a movie to Toys R Us the night before because they already had it (thanks Kathy!!! the boys loved the other movies, but they did have Calliou). Instead of another movie, the Thomas and Spiderman sunglasses caught my eye, and I bought them. Kendall became attached to his and REFUSED to remove them! After all the trouble I had last year trying to get him to keep sunglasses on, I was NOT going to discourage him! He wore them all day, except in the submarine simulator ride. He even wore them through dinner at my mom's! (we made him take them off in the pool and before bed though).



Zachary liked his sunglasses too, but kept them off more than on. As usual, towards the end of our trip tot he Aquarium, he couldn't wait to do his turtle immitation. He's pretty good really:



After the Aquarium, we went to Mom and Fritz's for dinner and a swim. The pool was FREEZING!!!!! Apparently, Sunday night is polar bear night. Even the boys were cold and we only stayed in about 40 minutes.

On the medical front there isn't much to report right now. Kendall finished this round of chemo on Sunday, and is due back for repeat scans on May 31st. We'll see where we are then and go on from there. I noticed Kendall does better when taking that nasty tasting stuff first thing in the morning, so I'm going to ask if I can change the order of the meds. I still haven't given up on the NG tube or capsule idea. I also wrote to the manufacturer asking for suggestions on how to make it easier to take orally (thanks Donna!).

Please say some extra special prayers this week for a very brave and strong little warrior named Christi Thomas. She is starting a very difficult and dangerous treatment in hopes of beating her NB back. Actually, it is the same treatment Kendall had back in March, but she has much more extensive disease, is older (9) and has been fighting much longer (over 3 years), so it is likely to be even harder on her. She has such a wonderful family, and her intelligence and bright smile have touched many hearts (mine included!). Send the Thomas Team some love and support at www.christithomas.blogspot.com

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Sunday, May 14, 2006 0:54 AM CDT

HAPPY MOTHER'S DAY!

This week was also my mom's 60th birthday. Her husband threw her a nice surprise party over at New Hyde Park Inn, with all her friends and family. We had a great time. Here is mom with her "Fairy Goddaughter" Nicole:



The boys enjoyed running around with their cousins and dancing the night away:



The music was provided by a friend of Fritz's and was really quite good. Who would have thought the Macarena could be played on an accordian? Actually, I was surprised by the variety that instrument can handle. Here is my mom teaching the boys "Hands Up":



As you can see, she is a very young 60! Mom actually cares for my very active 4-year-olds a good deal of the time, and they keep her on her toes. Chemo or not, Kendall has tons of energy right now! She does so much for everyone, and it was nice that she had a night just for herself for once!

Of course, there was the obligatory family portrait, which was just as difficult as I remember as a child! When we were younger, Mom took classes on photography. She had this old manual camera. It would take 20 minutes of fussing with dials and levers and lenses before she could finally snap that picture, all while we stood their with wooden smiles getting restless. It was worse when she wanted to be in the picture, because she would have to set it, then hand it off to someone (we had no tripod and no timer to my knowledge). Still, she took some great pictures. Now we have point and shoot digitals. In some ways it is easier, but it is still hard to get this motley crew to all pose together long enough to snap a shot!



Still a great picture. In the back starting from the left is Neil, me (I know, no one ever see's me in a picture!... no the camera did not break), my nephew Alex with my sister-in-law Liz, my Mom and Fritz. Along the bottom you have Zachary, my other nephew Andrew, Kendall and my brother Nick. Kendall doesn't ususally suck his thumb. He is only doing it now to drive Nonni (my mom) crazy!


So a very happy Mother's Day to my mom, and to all the moms out there. It's a tough job, with no pay and impossible hours, but one that most women long for and aspire to. I have learned never to take it for granted. I'll spend my day watching my kids have fun. That is my greatest joy. Please remember with prayers for peace all the mothers who have lost their children too.

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Monday, May 8, 2006 11:14 PM CDT

We have had a very busy and happy couple of weeks! Last Wednesday, the boys celebrated their birthday at the Morgan Center. Theresa from Sillybrations (photo above with the kids)helped make their day special by honoring them with an adorable puppet show! She has done entertainment at many of the parties for the Morgan Center kids, and is truly a kind-hearted and wonderful person. She does great characters, clowns, music and theme parties. The boys got so many wonderful gifts I was just overwhelmed! They are even now the proud new owners of Game Boys, thanks to Nancy the wonderful and generous people from the Morgan Center, in conjunction with the John Theissen Foundation.



The Center had several birthday's these last few weeks, and my boys actually made it to many of their parties! Happy Birthday to Molly, Madison, and Tyler. I appologize if I missed anyone, but I didn't get to many of the parties due to work:(

On a happy note, we did make it to celebrate the birthday of a fantastic two-year-old -- Connor!


Our very good friends Michele and Tom had a great party for their adorable son at the Fun-4-All, which we didn't make it to. Kendall's counts were just too low and I was afraid to take a chance. Even on a good day, that place is risky for him. However, we went to their house for a great backyard barbecue afterwards and the boys had a great day! They were looking forward to it for days, especially Zachary. Sadly, it is not Connor who he longs to spend time with, but his "girlfriend" Emily! Emily and James are the children of friends of Tom and Michele. We haven't seen them since his last birthday a year ago! Yet Zachary still remembers his first love Emily. He is absolutly smitten with her, and for good reason... she is adorable! Here are the kids playing on our bouncy castle (Kendall, Zachary, Emily and James):


Kendall has become more sociable, and he now also claims Emily as his girlfriend! I can see visions of the kind of fun that awaits us during their teenage years!

As if that wasn't enough, I decided to hold a separate birthday party for the boys so that their other friends and family could come. The school just isn't set up for that many people and all those other kids. I had to plan last minute, because we never know where we will stand with treatment at this point, and I wasn't sure what his counts would be like, so I didn't want to do a "children's place". I decided on a little picnic at the Holtsville Ecology Center, a great local park with a gazebo which we reserved (staked out!) playground a beautiful little free zoo. It also has a nice green house where we didn't take pictures! (I just didn't get around to it) There are great paths for walking and an exercise trail too. As is typical of me, I invited everyone, so we ended up with about 35 people there! Neil barbecued, and everyone had a nice time. Thanks to Kathy for the great macaroni salad, Rob for the music and first aid kit, and Tom for the extra coolers. And special thanks to my Mom and Fritz -- they took the kids all Saturday night and Sunday morning so Neil and I could get the shoping done and get set up.

The boys wanted scooters for their birthday, and how could anyone say no to them! Here they are going very fast! It is hard to photograph them, but trust me, they had fun.



Many thanks to all who joined us. The boys were so thrilled to have you all. It is great to see Kendall feeling so good and looking so happy. We go back to CHOP on Wednesday for his next round of chemo.

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Saturday, April 29, 2006 10:57 AM CDT

Well, we've had a fun week. Kendall is doing great with no obvious side effects from the chemo, other than the distaste of taking it. It is getting better. What I do is give him a little juice first, which he may or may not gag on and spit up. Once he has that taste in his mouth and is not gagging on it, we add in the medicine. I have it down to about 15-20 cc of juice for the 2 cc of irinotecan. This seems tolerable to him, although not well liked. I give it very slowly. He usually spits or gags up the first taste of it, but after that he will take it slowly, one or two cc's at a time, until we get it into him. Of course, there is a lot of stop and go, and bargaining. So far this treatment has cost us about 40 tootsie rolls. Still, we're getting off cheap considering how nasty the stuff is.

For those that gave suggestions, I thank you, but we cannot mix it in anything other than the approved crangrape, cranapple, or cranberry juice. None of those flavored syrups are acceptable. I am not sure why, but it has something to do with the composition of the drug. I guess it needs a certain pH or something. I appreciate all the concern for Kendall, but it really isn't all that horrible. Yes this med can be given IV, but that would be a different study. The doctors really feel that it is better absorbed this way (maybe slower absorption... sort of time released?) and that it will be more effective. Also, IV means an hour in the clinic every day, Monday-Friday. Remember, it is NEVER just an hour. He would need his port kept accessed all week too. It isn't that I wouldn't do these things if they felt it was the best way to treat him, but they don't. They feel the oral form is better so we will try that for now. If he can't tolerate it, we will talk about another treatment.

But he is tolerating it. The half-hour of icky medicine is it. He is free the rest of the day. His counts have held up well and he needs no shots. He can go to school and swimming, and to parties, and parks. He has tons of energy and a great appetite. As time goes on, we will get beter at getting the med into him. Each time it is easier. He will never like this stuff, but I let him decide how much juice (he usually picks more rather than less) and how fast to give it. Today took about 23 minutes and 25 cc of juice. The only really bad day was when I tried to give it in the clinic on Thursday. Having others around is not helpful and I won't do that again. I'll work out a different strategy for those days. It isn't that anyone did anything, but he plays to an audience looking for sympathy or someone to save him. The nurses weren't biting though, so eventually he took it.

As usual, life goes on in the Jackson house, and we now have a new complication. No heat or hot water. Our 30-year-old oil burner finally breathed it's last hot breath a few days ago. Thank goodness for 0inancing! They are coming on Monday to replace it, and the pipework and ductwork, as well as installing a separate hot water heater. We figured we'd update the whole system while they were at it, rather than have to do it at another time.

Neil drove down to Philly last night to get Kendall's replacement meds. He left work early, but still hit a lot of trafic. But he's back and we have it now. I'll try to come up with a better plan for future rounds in case they need it.

Kendall and Zachary will be four next week! Their birthday is on the 7th and we will be celebrating with a picnic in one of our favorite parks. Tis the birthday season for us, so we will have lots of parties coming up. Hopefully we will make all of them. The boys are also having a party at the Morgan Center on Wednesday too. Oh and Tuesday night is the Spring Party for our twins club. We have a lot going on. I'm just so happy Kendall feels well enough to enjoy it all! His hair is growing back, although slowly, his weight is going up (16.2 kg last week!) and his energy is unbelievable!

I'll get some new photos up next week. Right now we are going out to enjoy some of this beautiful weather! Love to all and thanks to everyone who posts in our Guestbook. It is great to hear from you.

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Saturday, April 22, 2006 11:37 AM CDT

Kendall is still doing great on the new chemo combo. He takes his pills like a champ. He doesn't like the oral med much at all. I tried giving it to him without the juice (some others suggested that, and he really isn't fond of CranGrape), but that didn't go well. He gagged horribly on it. Much worse than the sour look he gets from the juice mixture. So we will continue to use the juice. I only use a tiny amount so he doesn't have to drink too much. So far there have been no side effects that we've noticed.

I have some more great photos of our time at CHOP. The boys had a great time in Philly this trip, marred only by the occaisional blood draw. The blood is taken through his port, which we left accessed while there, so it doesn't hurt. But we did have to get back to clinic on time to do it. In between, we went to the Connoly Center where the boys played, snacked, and mostly got on the computer. As you can see, Zachary takes his computer games very seriously!


And Kendall.... not so much:



Here is a picture of part of our room. You can see the large four-poster beds on either side, the table under the window next to the fireplace. There was another attached alcove on the other side with a daybed and TV/DVD/VCR, and a HUGE bathroom. Our only complaint, we couldn't figure out how to work shower! So we showered up the hall for the night.



After clinic we went to the Academy of Natural Science Museum, where the boys had a blast. They have some great exhibits, and they particulaly liked the live frogs and the dinosaurs of course!



The boys also loved their archeology "dig". As you can see, Zachary took his archeology job very seriously!



And Kendall.... not so much!




Sorry for the excessive photos, but they are all such great shots and tell the story of our trip better than I can. Yesterday in the afternoon, we went to White Post Farms, and the boys had a great time playing, feeding animals and riding the ponies.

I'm sure my dial-up friends will be happy to hear I left my camera home for that trip!

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Thursday, April 20, 2006 6:47 AM CDT

First let me apologize, especially to my dial-up friends, about the extralarge photos on the page! I did shrink the pics before I loaded them, but I was doing it in a rush before work, and didn't realize until later that they weren't quite shrunk enough. I'll fix them when I get home.

Second, GOOD NEWS!!!: The rest of Kendall's scans came in and the response to the BSO/melphalan was great! As I said before, the CT report showed the primary tumor to have shrunk about 80 The MIBG (nuclear scan) showed two tiny areas of uptake in this original tumor site that were much smaller and fainter than on the original prestudy scan. There is nothing else! The tiny foci seen in the bones are gone. The bone marrow is clear. His other labwork and tests are all great.

Kendall started the new chemo yesterday and did AWESOME! The first , Temozolomide, is given in four capsuls to get the right dose. They are small, but I was slightly worried. It has been a while since Kendall had to swallow pills. No need to worry, he took them like a champ and downed each one easily, showing the nurse his empty mouth with pride. The second med, irinotecan, is actually an injectable liquid that is given orally. It does not taste good. I didn't actually taste it, but from what I can gather, it is quite icky. We mixed it with a bit of CranGrape, and he did not like it. But he did drink the whole thing down with little coaxing. It was not so bad that he could not tolerate it. So far his side effects have been - nothing. However, it is early, and we will see how he tolerates this.

On the downside, I was under the impression we could do once a week clinic visits with this combo, but they told me yesterday it will have to be twice a week. The second visit is just for draws though, and shouldn't take long. It is still an inconvenience. They may change this after a few rounds. The plan is for him to get two rounds of this (a round is 21 days - 5 days of both meds, two days of nothing, 5 days of the irino, then nothing for the remainder of the cycle). After that they will rescan and see what the response was. The hope is for stable, or even improved disease. If he does well they may keep him on this for several rounds. The only other meds he needs is Zofran for nausea on the chemo days, and cefaxine, an antibiotic that helps control the diarrhea that is sometimes associated with these . I'm not sure why it works, but they've had kids on this combo for 8, 9 or even 10 cycles without any problem as long as they get that cefaxine (not sure of the spelling).

We are having a great trip this time. I was so happy Zachary was able to come with us (many thanks to my Mom for coming to help with him!). We got the delux accomodations at the Ronald McDonald House! We are in one of the rooms in the old building that is just HUGE! There is a fireplace (pretty, even if it isn't working) a balcony with shuttered windows (I don't think you are supposed to walk out on it, but it looks pretty) and its own huge bathroom. It even has a separate alcove with a single day bed and a TV/VCR combo and a table and chairs! I'm not saying the other rooms weren't nice, but this one was far and above the others and truly gorgeous. I will try to get some photos up when I get back. We also managed to come during their volunteer appreciation day! They had hundreds of people here, and a nice dinner, complete with wine and beer! (for the s). There was music and dancing, and the staff put on a great show. The boys really loved it and we were so thrilled to be here to say thanks to those wonderful volunteers that work here. Without them, this place would not be able to run so smoothly or do what they do. The love and support that the families get here is just unbelievable.

I'm off to CHOP again for a bit, then we will take the boys to one of the local museums, the Academy of Natural Sciences. I'm sure it will be great! They have dinosaurs and some live animals too.

Thanks to all who have emailed or left messages. We are doing great and your prayers are greatly appreciated.

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Sunday, April 16, 2006 7:39 AM CDT

HAPPY EASTER EVERYONE!!!!

Kendall is doing just great. The doctors were very pleased with his CT results, labwork (pretty much normal!) and overall physical health and energy. Even though the whole family has suffered from one of the worsed colds I can remember, Kendall actually seemed to feel better than the rest of us! His symptoms didn't last as long and were not as severe. He will be starting chemo next week consisting of irinotecan and temozolomide. The temo is a capsule (four actually) that we are pretty sure Kendall will swallow. The irino is an injectable that will be given orally, even though it tastes awful! Apparently, they have found it is absorbed better this way, and it is easier because we can do this at home. The first two days he will be in the clinic to get these meds, then we can give them at home. He will be getting them for 10 days, then not again for two weeks. We just have to go to clinic for bloodwork once a week, and that can be done here in Stony Brook. They will rescan after the second cycle, in about two months.


The boys will be spending this Easter at Sports Plus!!!! We are going to an Easter breakfast there then they will get ride coupons and tokens, and we will spend the day having fun. Kendall's counts are not likely to get any higher than this, and we figured it was a great way to have some fun. Their grandparents will be joining us too. We really needed a stress-free and fun way to spend the day, and I think this will be a blast. Will update later, hopefully with photos!

Love to all.

HE is Risen!

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Saturday, April 8, 2006 8:13 AM CDT

Sorry again for the lack of updates! I will try to get new photos on soon. Kendall is completely bald now, but looks cuter than ever, and is feeling just great. Actually, his hair is growing back. We have good news - the CT scan showed over 80% reduction in the abdominal tumor! This is a very good response. His labs and chemistries are basically normal now too, which means his body has recovered almost a full month earlier than expected.

Therefore, we must give more chemo!

Actually the next step is the MIBG treatment, which uses a radioactive nucleotide to seek out and kill cancer cells. You may have heard me mention of MIBG scans, because they use this same substance in small quantities to see the tumors and metastases. The tumor cells uptake the MIBG material and light up on the nuclear scan. By adding a stronger radioactive material in stronger doses, it will actually kill the tumor cells instead of just lighting them up. I'll describe this more in detail when we get closer to doing that treatment, if indeed we do it. Right now, there is about a 6-8 week waiting list for it. They need special rooms for after the treatment and there are only a few slots available.

So in the meantime, more chemo. We are currently going with two drugs called irinotecan and temozolomide. These are fairly well-tolerated oral chemos that can mostly be given at home. The fist two days will be done in the clinic to make sure there is no reaction, and so they can tests levels of the drugs. He will also be given an antibiotic to help with some of the intestinal problems that can occure, and zofran for nausea. He will get a few rounds of this, then we will rescan and schedule the MIBG. In the meantime, I will be consulting with Sloan Kettering (or trying to!) to see if they have any other options we may pursue.

The doctors are very pleased with Kendall's response and recovery, and so am I. He really does feel great and is back to his old adorable self. Sadly, the boys do have colds again (argh!) so we missed the last day of school before the break.


I did receive some bad news this week, but not related to Kendall. I'm a member of an online support community called ACOR (association of cancer online resources). Many of you have heard me mention my listserve friends. Most of these people I have not met, but we all share a common issue - neuroblastoma. They have support groups for every cancer, and I really do feel it has helped. I learned alot about the disease, and was able to quickly research protocols and facilities. It is also helpful to talk to others who know what you are going through. When I first joined, I spent hours pouring through the archives, going back to 1998. I didn't post for a long time, just read what others said. I didn't read every post, but followed threads that caught my attention, and I learned a lot this way. I also got to know many of the current posters through their prior writings. I spent many hours crying over children I've never met, many of whome died years ago. This may not seem a healthy passtime for a mom trying to cope with the new diagnoses of cancer in her own child, but somehow it helped. One boy's story in particular caught my attention. His name was Nick Snow. His mom Shannon shared much of his life and treatment with the group, and always had comforting and supportive words for others. She was a great advocate for Nick, often battling the medical community on issues of pain management and patient comfort, and battling her school district to make sure they met his needs. Her love for her son shown through every word and message. Each week, I'd read a little further, anticipating the post of his death. Nick battled NB for SEVEN years! That is right, seven. He started when he was only 6 and was treated continuously until age 13 at which point, he was finally pronouced NED! It was a miracle. He was a pioneer of more phase I studies than almost anyone else. For that fact, he was one of the kids in the pilot study for the BSO/melphalan treatment that we just did. Shannon credits this treatment with finally turning the course of his disease around so that further treatments were able to bring him into remission. Not one of his doctors expected that remission to last. But it did. Over, three years later and he was still cancer free. But the years of treatment had their effect, and he also had unrelated medical issues from birth. Still, he lead a great life and affected many people. He was a musician, and would often spend his time in the hospital teaching the younger children to play the drums. He reached out to others and touched so many lives. He was a beacon of hope for many of us, as he really did beat the odds. While his life was not easy, it was full and fun, and love and hope, and he had so much potential.

It is with great shock and sadness that I tell you of his passing. Nick died from complications of a bowel infection. He apparently went peacefully and without pain, surrounded by the people he loved most. He was only 16. It is amazing how much the death of someone you never met can affect you. I am very deeply saddened by his passing.

To learn more about Nick and his amazing journey, visit his website at www.caringbridge.com/ca/nicksnow. Send some love and prayers to his mother Shannon, and his father Shelby, who are just devastated and heartbroken.

Sorry to bum everyone out. I promise some cute photos and a more cheerful update later this weekend.

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Wednesday, March 29, 2006 9:39 PM CST

Sorry for the lack of updates, but things have been quite busy and there wasn't much to report. Kendall has been doing great. He is eating more or less normally now and has gained back some of the weight he lost. A couple of more pounds and we can see how he does without the NG tube. The tube is not bothering him much, but he is nervous about playing around other children. He is somewhat fearful that they will accidentally pull it out, like when we go to a park. He was back at school for a few days and really enjoyed himself. Unfortunately, the boys and me caught a cold and have missed the last couple of days.

Kendall's bloodwork and labs have come back so good, that the doctors in Philly want to see him for a re-evaluation now, rather than wait until May as was originally planned. A CT is scheduled for next week to see what kind of effect the chemo has had on the primary tumor. That will help determine what the next treatment step is. We are still working on his Make A Wish trip. All the papers are in, and the dates are being set! I'll update when we know.

Thank you all again for your continued prayers and well wishes. I've had to go back to work for a bit, so I just don't have time to answer each email and guesbook entry personally right now, but I do really appreciate the outporing of support and kindness we have received.

I end this update with a couple of photos from CHOP. The first is of Kendall in the Connely Center play area:



And this is Kendall with his new dinosaur friend, Brawny.

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Friday, March 17, 2006 11:00 PM CST

Just a quick update: WE ARE HOME!!!!! Kendall's counts have continued to go up - ANC 2640 (meaure of ability to fight infection... this is now in the normal range). HGB 12.4 (also normal!) Platelets were 68000 after a transfusion. The platelets are usually the last to rebound, so this is all normal.

Most of Kendall's hair has fallen out, but it doesn't seem to bother him much. He is tolerating the NG tube well, but he is already starting to eat more normally being home. Today he had a bowl of cocoa krispies (no milk!) some fruit punch, a small Slurpee, one and a half slices of pizza (yes, I said one and a half!) and half a bowl of popcorn with butter. The popcorn he ate while the tube feeding had already started! He should have that weight back on in no time. He already is looking a lot better.

I'll post photos tomorrow or Sundy. Right now, it is time to sleep!!!! Good night all.

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Thursday, March 16, 2006 8:49 PM CST

It's official. We will be discharged tomorrow morning! It would have been tonight, but there were some technical difficulties getting me the training I needed to care for and replace Kendall's NG tube, and getting the home care company to get the needed supplies together. By the time everything was done, we wouldn't have been able to leave until after 7 pm, and we wouldn't have his evening feeding for tonight. So it was better to let them do the feeding here and we can get out tomorrow.

Kendall's counts are good, but he still needs the GCSF. His ANC went up to 1491. More importantly, his hemoglobin went UP to 11.9 from 10.4 the day before. That means that engraftment is going well and he is producing his own red cells. His platelets took a bit of a drop, down to 17K from 23K, but that's not that bad. They gave us a transfusion today as he was having some slight nose bleeding again, and we would have needed it before we left anyway. The platelets are always the last to come back.

We had some trouble with a malfunctioning access line to his port. It would not have been an issue if he didn't need the platelets. Once they send them up, you only have a short time to infuse them. The played with the line for a while, trying to flush it and move it around, but eventually they had to give up and de-access him then re-access right away.... no time for EMLA (the numbing cream they use). It was awfully painful, but fast. He was just exhausted after all that and rested most of the afternoon. He came up to the Connelly Center to play while I went through the NG tube training session. We decided he had enough for one day, and I will do the actual tube placement on him sometime tomorrow with the nurse. I did OK on the model they have. Luckily, unless he vomits it up or pulls it out, he won't have to take the tube out for a month. He may not even need it all that long. His weight already went from 14.2 KG to 14.8 KG in just two days of feeding! He is eating somewhat more during the day as well, although much of it is "junk" food!

I'll add new photos when we get home (or sometime over the weekend). We will have a busy week next week, but we are glad to be going home!

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Wednesday, March 15, 2006 11:27 PM CST

We had a truly great day today!

First the good news - NO FEVERS! His temp was 37.8C this morning (100.04F) and dropped down to a perfectly normal 36.9C (98.4F). It has remained about that all day, maybe going up or down slightly, but not going about 38, which is what they consider to be a fever.

Now the really good news - ANC was 1176! That's right folks, we are no longer consider neutropenic! Of course, we will still have to be careful for the next few weeks, but most restrictions have been lifted.

With any luck we will be heading home tomorrow.

Today we were entertained by a very dramatic reading from Henry Winkler in the Connelly Center! Yes, Kendall's counts were good enough that he could go. He was nervous from the TV cameras, but sat quietly on my lap. Zach was much less nervous and really enjoyed the reading, because it contained "fart" humor! For those who aren't familiar with his work, Henry Winkler is an actor, who had a very popular character in a sitcom called "Happy Days" back in the 1970's. It was one of my favorite shows back then, and everyone loved "The Fonz"! So it was pretty exciting to meet him in person, even if only briefly. He he's had pretty diverse career since then, and now has a new TV show on CBS called "Out of Practice", where he plays a doctor. What many people don't know about him (myself included until today), is he has a series of children's books! They are about a 4th grader named Hank Zipzer, and are very funny! He informed us that basically the character is himself as a child. He was nice enough to stop and allow some photos with the families, and I got one of me and the boys and him! (Kendall is kind of hiding, but it's OK). I'll post it to the website when I get back. I realize from the boys' point of view they'd rather have met Scooby Doo or Batman, but they were well behaved, and that is all I ask.

Today was also Kendall's first Physical Therapy consult, and things look pretty good all in all. He has lost some condition, but they feel just getting some good nutrition into him (hence the tube feeding) and getting him to exercize more will help. The therapist was nice, and after an hour with her, Kendall was moving much better. She gave me some exercises and activities I can do to help encourage him to move those muscles again. I have no doubt that will improve too once he gets home.

Hopefully I will be updating from home tomorrow! Thank you all again for your kind words and prayers.

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Tuesday, March 14, 2006 10:13 PM CST

Sigh. The fevers still linger, although they are lower, and he has had more hours of normalcy today. There is improvement, but it sure is slooooow! They are now thinking maybe EBV (Epstein-Barr Virus/mono) or some similar adenovirus. Being that he has not responded to antibiotics, they took him off all except for the ampicillin. They tested for EBV, and if it come up positive, they will take him off the that too. There is nothing you can do for it but support with extra fluids and rest. As his counts return, he should (and has) improve. Today his ANC has reached 320. This is more than double of yesterday. There are also monocytes seen, which indicate engraftment of the stem cells. His HGB (hemoglobin) was 6.7 (normal is about 11.4-13). This indicates severe anemia, and he was given a red cell transfusion. His platelets have improved greatly after yesterday's transfusion. I will never know who donated that blood, but will forever be greatful. For those who can get out and donate, go ahead and do it. It doesn't even matter if the blood is for Kendall, someone just like him needs it.

Kendall definiately felt better after some red cells, and was up and about in a wheelchair, and even did some walking and range of motion exercies. I asked for a PT consult while he's here, they may be able to help with some strength exercies too. He has tolerated that NG tube better than I though. Today he ate most of a bag of gold fish (the LARGE bag)and some teddy grahams today. He also had milk and some ginger ale. If he eats better, they will take him off the tube feeds.

I took Zachary to the University of Pennsylvania Museum of Archeology and Anthropology around the block from the hospital. We saw it yesterday during our walk, and he wanted to go in the "creepy castle". He liked it, but I think some of the ancient statues scared him a bit, especially the Asian and Egyptian ones. Strangely enough, he wasn't as bothered by the sight of human skeletons, but rather thought they were cool. He was fascinated by the gift shop and we spent quite a time there picking out presents. Unfortuantely, Kendall woke up and finding me gone, kind of freaked out. I got a desparate call from my mom to come back, as he was just inconsolable. He did some music therapy, but was too distrated by my being gone to have any real fun. I don't know why today he was so upset. Zachary and I usually spend some time together when he visits. I guess because he was dozing off when I left and I didn't give him a proper goodbye. It was still nice to have lunch with just Zachary, and to get out in the fresh air. Zachary is really a very charming companion and a lot of fun to go on walks with. He is now officially bilingual, thanks to hours of Dora and Sesame street! He tells me to walk mas despacio (slower) or rapido (faster), and will often greet people in Spanish or read the numbers in Spanish. He has excellent maners and will say please, thank you, por favor, gracias, de nada and your welcome interchangeably. He also likes to say a few words and phrases in German, and can sing Alloutte pretty well. He loves the Cat in the Hat song where they translate "cat" and "hat" into several languages. So cute to hear him sing it!

It is late now and time for sleep. Hopefully, tomorrow will bring an end to fevers!

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Monday, March 13, 2006 9:37 PM CST

Fevers still remain, despite antibiotics. They are now calling this "a virus". His fevers range between 101 and 102.5, mostly hovering just below 102. But he had some times of normal temperature today, without any Motrin. His ANC continues to rise and it was 120 this morning. He had a slight nosebleed and needed some platelets (they droped back down to 19000). He has not been active enough, and his legs are getting too stiff. I will ask about a PT consult tomorrow. Kendall did enjoy a couple hours with his port de-accessed today, as it was time to change the access line. He had a shower-bath, which made him a bit nervous, but he felt a lot better afterwards (and was much cleaner). He would not let me wash or even wet his hair, and I didn't push it. It is beginning to fall out now. Little hairs all over the pillow. He was a bit upset at first, but seems to have accepted it as relatively low on his list of crummy things today. He also would not let me soak or remove his bandaids from the GCSF shots (he has 4-5 on his leg now!) Kendall slept a good part of the day, probably because he didn't sleep much last night. I can only hope he will sleep tonight.

Kendall just isn't eating and drinking anywhere near enough at this point. He does try, but just can't seem to do it. His throat is sore and he just doesn't feel good, so he tries to eat and only takes a bite or two. Then he just can't. The decision was made to put him on an NG tube and supplement him overnight. The poor baby has never had one put in while he was awake. The only NG tubes he had were for drainage after certain surgeries, and he wasn't being fed through those. He was extremely good and cooperative for having the tube placed, although he didn't much like it and he was very stressed about it. I am not sure if I did a good enough job of convincing him that the tube is not punishment for not eating enough. The nurse tried too, but he just stared off blankly as if he didn't hear us. He looks really sad about the tube, but it is the best solution for right now. Kendall is down to 14.1 KG (31 lbs). Back on January 16 he weighed 16.4 KG (36.1 lbs). He was considered average weight at that size. The hope is the calories and getting his stomach used to having food in it again will stimulate his appetite to eat on his own. They can then lower the tube feedings and eventually eliminate them.

Seeing him with that tube in his nose really bothered me more than I thought. I know many kids on chemo need them at some point or another, but he has gone so long without the need for one. And he looked at me with those big sad brown eyes and just kept asking, why they had to put the tuby in his nose and mouth. I made the nurse explain again, but I still don't think he really got it.

Today I must belatedly thank one of Neil's friends from work, Dennis. His wife is a teacher and he had her class make Valentines for Kendall. Due to quick changes in plans and traveling schedules, Neil didn't get them to us before Valentine's Day, then he just didn't get the chance to give them to Kendall until a couple of days ago. I hung them on the walls this morning, next to his email cards, and he was so thrilled to see all the hearts. The kids did a great job and wrote beautiful messages. A heartfelt thank you goes out to all those kids. They lifted our spirits at a time when we really needed it. They are also very cheerful and brighten up the room. Thank you all.

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Sunday, March 12, 2006 11:45 PM CST

Well, sorry to say the fevers still continue. On the bright side, we finally have an ANC (60 this morning) so those cells are starting to come back in. This should help get that fever under control.

Kendall was feeling better today, even without any Motrin all day. He was up for a bit and played some checkers with me and Zachary. They were Eagle's checkers, and the pieces were little football helmets. He didn't exactly play the game... it took quite a while to set all those little helmets on the checkerboard. The boys kept trying to put them on their heads or fingers. They didn't really understand the setup, but we were making progress. Then as I glance over at the directions, I find that you are supposed to start with the facemasks off. The helmets are considered "rookies" and can only move in one direction until they get to their opponents "goal", then you put the face masks on to crown them "veterans". So I had the boys take all the facemasks off. By that time, Kendall was too tired to play for long. They only got through a couple of moves, and he put his head on the pillow and fell asleep.

Kendall even ate a little today. He had a bowl of cheerios with milk, and some raisin bran (mostly just the raisins!). He even drank a few glasses of milk. At one point, he even cooperated for the doctor trying to exam him by opening his mouth wide and saying AHHH (something he has been unwilling to do the last few days.... they could only get little quick peaks in his mouth). Lo and behold, the doctor sees some white patches on his tonsils. Looks like strep he says! That could explain much of his symptoms. They added another antibiotic that is more specific for strep in the hopes of knocking that fever down. However, it is almost 2AM now, he has had two doses of that antibiotic, and the fever remains. He is still uncomfortable. But they just gave him a dose of motrin so he can rest comfortably and sleep a bit (maybe me too!).

Thank you for everyone who sent those adorable E-cards! He was so thrilled to get mail. He was a bit sad about Neil going home so he could go back to work tomrrow. My mom came back up to help out with Zachary (thanks Mom!), and after they left he looked a bit down. Getting mail really picked him up. We read all the cards, and I asked him if he wanted me to hang them up, but he wanted to put them all back in the envelope so he could open them again! I'll let him take them out again and hang them up in the morning. Hopefully he will be feeling better then.

I can't thank everyone enough who send such beautiful emails and leave such messages of love and encouragement in his guestbook. I do read them to the boys most days, and he loves hearing about all the people who pray for him to feel better. I don't have time to respond to everyone individually, but know that your kind thoughts and prayers are greatly appreciated. I'll keep in touch as best I can.

Happy St. Patty's day to all our Irish friends and to those who just like to be Irish for the day!

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Saturday, March 11, 2006 1:11 PM CST

The fevers still persisted through the night, ranging from 101.2-103.2. They still are not giving any meds, except the antibiotics. His platelets are too low (down to 18,000 now). He will get a platelet transfusion today (or tomorrow). He is not eating now and is pretty lethartic, but not really in any acute pain or distress. However, when they examined him this morning, he seemed tender around the neck area. There are a few small swollen lymph nodes there that lead them to believe he is trying to fight off an infection. He was also complaining of pain over the right lower ribs when you touch them (he tells me it only hurts when you touch) and leg pain. The leg pain is most likely due to the GCSF shots -- partially soreness from where he gets the needles, and partially bone pain from the increased marrow production. He's had that before. I'm not sure about the rib pain, but it could be from the same thing. I told the nurse who will let the doctors know.

I spoke with the doctors this morning, who feel he just has to ride this out. As soon as those cells really start to kick in, he will be able to fight off the fevers. They are pleased he isn't showing any signs of sepsis and his blood pressure and labs look good. It is hard to just sit and wait though! We may be turning a corner soon. Kendall's WBC went from 0.1 to 0.3 this morning. Even though there are no neutrophils yet (therefore, no ANC), it shouldn't be much longer before they start to come back.

I'll see what the doctors say later. Right now Zachary and I are up on the Conelly Center doing laundry while Neil sits with poor Kendall. Hopefully I will have better updates soon!

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Friday, March 10, 2006 11:00 AM CST

UPDATE: 6:30 PM:

I would love to be able to report that the fever went away on its own, but that is not the case. It got worse throughout the day. They added two more antibiotics and took more cultures of the line. One of the aides ran down to the ER and got Kendall two huge buckets of slushy, which he has been happilly drinking all day. They still have him on fluids and are trying a cooling blanket a well. However, the fever is persistant and made its way up to 104.3 or so (axillary). It was decided to bring it down with some Motrin, even though his platelets are a bit low. He seems a lot more comfortable now.

Keep us in your prayers. I'll try to update later tonight or early tomorrow.

***********************************

Well, Kendall is feeling much better, but still at an ANC of 0. His other blood counts are also droping still (HGB was 9.6 today, Platelets were 37), but not enough to require transfusion yet.

One of the nice things about staying here, is the whole unit is HEPA filtered and considered "clean". So he is not isolated to the room, just to the unit. That means he can go to the playroom or ride cars around the hallways with his brother. It makes it alot easier. I could do my laundry in the family room while the boys relaxed and watched a movie. Zachary and I were able to go get something to eat while Neil chased Kendall around in the little cars, or played computer games with him.

Today he is feeling a bit sluggish again, probably because of the anemia. It still isn't low enough to warrant a transfusion, but may be making him feel a bit slow. But he ate a pretty good breakfast (by cancer patient standards) of hardboiled egg (whites only), a whole container of Cocoa Krispies and a whole glass of milk. They are only giving him fluids at night, and for the half hour while they give the antibiotics, so he doesn't have any IV pole to lug around all day. He is also more interested in drinking which is good. He doesn't seem to have any more pain or discomfort, which is good too.

It isn't likely we will be home before Monday, but I suppose anything can happen! Much thanks to our good friend Tom for feeding our cat while we are gone and checking on our mail.

BAH, just as I am updating, the nurse came in to tell us that Kendall's temperature slightly up again. For now they are just watching and seeing whether it goes up or down or stays the same. I'll update later.

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Wednesday, March 8, 2006 9:18 PM CST

Kendall continued to improve today, although he had some ups and downs. By the evening he felt a LOT better. His fevers are gone with just antibiotics (they cut two of them out after the second dose, but will continue him on the one for a while). He had a bit of nausea, but they gave him some Zofran and that seemed to settle that down. He didn't eat much and hardly drank anything, but otherwise was in good spirits. He played on the computer with Daddy, who came to stay for a few more days (and hopefully to take us home eventually!) He colored and played Thomas games as well. His ANC is currently 0, and until it comes up they won't release us. However, he gets his GCSF shot each evening, and it is hopeful those numbers will come up in a couple of days. We HATE those shots, but they have previously been very effective for him and he usually rebounds his counts quickly.

I'm pretty sure the problem is a bladder infection, and we will see what grows on the cultures. Even if nothing, he has all the symptoms. He gets pain on urination, and there was some blood in the urine too. This time there was also some white cells, so it is pointing more towards a bladder infection. The pain is much milder than what was going on last week though, and that is most likely due to the combination of fluids flushing things out and the antibiotics starting to work. Hopefully he will be feeling even better tomorrow and start eating more regularly. It seems like just as his appetite returns, something else happens to squash it! They still aren't worried right now though, because he is a good eater when he is feeling well.

If anyone wants to send him an E-card, the hospital prints them out and delivers them to him each day! Just go to www.chop.edu/ecards. His room number is 3S05 (Three South zero five). He loves getting mail! Thanks to all who check up on Kendall! And thank you for the many kind thoughts and prayers.

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Monday, March 6, 2006 10:38 PM CST

Kendall is doing great, but he wasn't too happy about having his port accessed again! They will leave it in for the rest of the week, then pull it on Friday when we go home.

That's right! We are scheduled to go home Friday. He has to go to clinic every day this week for tests and neurological tests, but after that we will be able to go back home and be followed twice a week at our home hospital, then maybe once a week after the first couple of weeks. We are tentatively planning a make a wish trip to Disney sometime in April, as that would be the best time for this chemo cycle.

Kendall is thin now, he has lost about 5 lbs since relapsing in January. I'm going to work on fattening him up a bit. His appetite is improving slowly but surely. His counts remain good right now, but are expected to drop around Wednesday or so, then to rebound quickly due to the stem cells and GCSF shots. We those shots, but they work wonders on getting your immunity back!

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Saturday, March 4, 2006 9:31 PM CST

Kendall is doing great today and is pretty much back to his normal, active, silly self. He was taken off the fluids this morning and he drank just fine with a little encouragement. He ate pretty well all things considered, including pancakes for breakfast, some soup for lunch, and a hot dog for dinner. He even had several snacks and cereal too. Not bad considering his tastes must still be affected by the DMSO. You can still smell it on his breath!

He enjoyed some unencumbered running time with his dad and brother, and they were playing tag in the lobby most of the morning. He tolerate his GCSF shot very well, without much fuss at all. I think the ice packs really help. Partially because it distracted him, and partially because it cools off the sting from the medicine.

The plan is to discharge us tomorrow to the Ronald McDonald House. I'll be giving him his GCSF shot myself tomorrow night (I HATE those shots!). He will be going to clinic every day for bloodwork and neurological evaluations. The neuro evals are fun for him. It is just the doctors asking him to do things like touch his nose then touch their finger, or squeeze with both hands or push with both legs at the same time. They check for balance and any signs of weakness or confusion. He thinks it is all very funny, but it is important. One of the meds could cause some brain swelling so it is important to watch him closely for any neurological changes. There are medications they can give to help, but it has to be done right away. So far he has shown no major side effects from the drugs. His counts all continue to hold out and he is feeling just fine right now. We do expect there to be a significant drop in counts over the next week.

I found out today you can send free E-cards to kids here in the hospital! Mom and I sent Kendall cards, and the nurses printed them and delivered them to him the next day! He thought that was really cool. He felt so important getting mail. Next time I'll let everyone know how to do it. It doesn't cost anything or take much time, and is such a sweet thing.

Thank you to everyone for your continued support and for checking up on us. I read all the messages in the GuestBook and really appreciate them. I also read them to him when we have computer access. When I get home I'll print them out and save them, then start deleting some of the older ones so it doesn't load so slowly.

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Friday, March 3, 2006 7:51 PM CST

Kendall is feeling much better today. He had no pain and no pain killers since yesterday morning. He still didn't have much of an appetite, but was starting to eat a little. Then they had to give him back the stem cells. That isn't much fun! It doesn't hurt, but the preservative they use (DMSO) causes a bad taste in the mouth. They gave him three different antinausea meds (Zofran, Atavan, and Benedryl), but he still was gaging while they gave him back each syringe, and he spit up a bit on the last one (they are given IV, but you can still taste it). The smell is awful, but you get used to it. Tonight they will give him his GCSF shot at 11. Can't be helped.

Otherwise, we are doing well and will likely be sent back to the Ronald McDonald House on Sunday. Thanks for checking up on us.

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Thursday, March 2, 2006 11:51 AM CST

Well, what a difference a few hours makes. I hope this is a leveling off of the road and not the top of the rollercoaster hill...

Kendall slept all morning and woke up pain free in the afternoon. He continued to improve all day to the point where he was dancing and singing and his usual cheerful and charming self! He's had no pan meds since 7am and seems very comfortable. No obvious sign of those bladder spasms. Lets hope they are gone for good!

**********************************
Well, we switched to morphine every four hours and the pain is better under control. The other meds were wearing off too soon, but the morphine seems to last just long enough to keep him comfortable. During the day we will hold off on the meds until he shows signs of pain, but at night they are just giving it to him on time so he doesn't wake up in pain.

Today Kendall is starting to feel the effect of all the chemo and is very quiet and tired. He will likely be like this for a couple of days. His bloodwork looks good so far and he is otherwise doing OK. Tomorrow he gets his stem cells and we should be released on Sunday to the Ronald McDonald House for a week. Then home the following weekend.

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Tuesday, February 28, 2006 4:14 PM CST

Well, the bladder medicines didn't really work well enough. Almost exactly two hours after giving them he was in pain again. They decided to try an IV NSAID called Ketorolac, which worked like a charm. He slept for 6 hours and woke more or less comfortable. They are giving it every 4-6 hours as needed, and he is like a new kid! So happy and cheerful.

They did a bladder ultrasound which showed nothing unusual. It was decided that his pain is related to the cancer in some way, so we just go ahead with the treatment. Hopefully he will have a good response to these drugs. So far no unusual or horrible side effects, but his counts haven't been affected yet.

I'll try to update again tomorrow.

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Monday, February 27, 2006 10:27 PM CST

Well, we started on the study, but Kendall is still in a lot of discomfort. Say an extra prayer for this poor baby that he gets some more permanent relief soon. The current theory is the pain is from bladder spasms, the cause of the spasms is up for debate, but most likely multiple contributing factors. They are giving him two different meds now for it, and he is finally sleeping comfortably. I just hope it lasts.

We had a awful night after our drive up. Kendall was not feeling all that bad on Sunday morning. He didn't want to eat much breakfast, but he cheerfully got dressed and was first in the car for our trip. He had one minor episode of pain on the way to Aunt Kathy's, but felt better after going to the bathroom. He was happy to be playing with her dog Winston, and both boys were running, jumping and playing hard enough to piss off her neighbors! Thanks for dinner Kath! It was great to finally see her new place. The boys were very impressed by her view of the Verrazano, and the big ships that floated by!

It started when we first got into Philly. He cried the last few minutes of the car ride and for quite a bit afterwards. But it went away. We had no pain meds (I have properly kicked myself for that many times over and will never get over the guilt). However, the doctors feel that pain meds were part of the cause of the problem, so it was probably best we didn't give any. Kendall was up every two hours with pain throughout the night, until about 5am, when he slept until 9am. Then we went to clinic. They quickly assessed him and decided that further pain meds were not the best option. Also, it didn't seem bad in the morning (I think it gets worse in the evenings.) We got a room on 3South, the transplant unit. Very nice. Single rooms, huge! (bigger than my bedroom I think!) with nice couches for me to sleep on and a private shower. The nurses are very nice and have tried to comfort him as best we can. The first med didn't seem to help, so they added a second, and so far he woke up once with some brief discomfort, but it was only about one minute and he went back to sleep. Hopefully it will last.

I will get some sleep now while I can. They start the second chemo tomorrow if all goes well. This is the one that is expected to really hit this disease hard and hopefully get it under control again. The pain could be part of the cancer, so they are hoping the treatment will also help that. Me too.

Thank you all for your kind thoughts and prayers.

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Friday, February 24, 2006 8:02 AM CST

Sorry for the delay of update, but it's been a bit hectic. We went to Philly for the pretesting and port placement, and Kendall did very well. He was a little sad his girlfriend Sarah (see photos in journal history) wasn't there, but otherwise was having fun. The port caused some soreness, but they gave us pain killers to help that out. On Wednesday, he seemed to be in more and more pain and feeling uncomfortable, and kept saying he wanted to go home. His scans ended late, and we debated on staying, but decided to go home instead because he seemed to really want to go. He wouldn't eat and drank little. Yesterday morning, he woke up, climed into bed and demanded breakfast. I was so happy because he hardly ate anything the day before. He said he wanted a yogurt stick, but only took two bites, then half a glass of milk, and insisted he was full. A few minutes later he went to the bathroom and doubled over in pain! He was absolutely miserable, crying in pain. So I called the doctors, who felt it was probably a urinary tract infection and told me to get him to Stonybrook and then have them call Dr. Maris at CHOP for instructions (Kendall can't take any Tylenol or antibiotics before the treatment on Monday, and there are other drugs he can't have too). I gave him some oxycodone which took care of the pain, and took him to clinic at Stonybrook. They determined he was dehydrated and hadn't eaten enough in the last couple of days. So we spent the rest of the day in clinic hooked to fluids. That really helped and Kendall slept comfortably through most of it. He felt at LOT better afterwards, and even ate a bit of cereal and drank a few sips of cranberry juice. They sent us home on IV fluids for the next couple of days. I have to hook him up for 14 hours a day. Most of that is at night though, so it isn't too bad. He was very good for it and this morning he seems much brighter and happier and even went to the bathroom with a lot less pain. So far no pain meds today, we'll see how it goes.

I'll have to call CHOP later to get the scan results, but so far the plan is to return on Monday to start treatment. Today we will take it easy. I'll take the boys shoping and to the library maybe if they are up to it. So far Kendall seems a lot better and he is playing with trains. Zachary made us some cupcakes yesterday, so maybe we can entice him to eat a bit with that!

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Sunday, February 19, 2006 10:48 AM CST

Sorry for the delay of update, but we've been out having fun! Yesterday we went to Sports Plus and the boys had a BLAST! Kendall feels great, is eating well and playing hard. We followed that up by dinner with friends. It was great seeing everyone again!

As promised, I have some updated photos taken at the Philadelphia Ronald McDonald house. The place is just gorgeous. It looks like a mansion....well, it IS a mansion! The house was built back in the 1800's and has gorgeous wood and marble work. Photos don't really do it justice, but you can sort of see the gorgeous fireplace in the front hall behind the boys and the bear above. This was the original Ronald McDonald house, and it is very well maintained. They added on an extension with hotel-like rooms. They have several play areas, computers, video games, lounges with TV's, TONS of movies and books just laying around, play stations, and an outdoor playground for when the weather gets nice. The staff is absolutely awesome and will bend over backwards for you, and they are also blessed with lots of volunteers that do all sorts of stuff! Different groups come to coook dinner every night and breakfast most weekend mornings. They have volunteers that drive you back and forth to the hospital at regular intervals, saving expensive parking fees, students from the local colleges come to play with the kids so the parents can take a break, groups come to do arts and crafts, a group from the veterinary college came with therapy dogs! (I'll post some photos with the dogs another time, I just have so many!). We met a lot of nice people, and the boys became fast friends with a pretty little girl named Sarah. (seen here in one of the play areas with Kendall):



They also enjoyed meeting a nice boy from Colorado named Adam, and Carter, who was also there for NB treatment. It was great to have such a warm loving environment to go back to after clinic visits and tests, and Zachary was well entertained. The boys were so happy to be able to be together. Thanks Mom for giving up your trip to Aruba to come with us so we didn't have to separate them!

A wonderful lady named Christina Sexton (sorry, I forgot the name of your shop!) from a local hair salon came on Wednesday and donated her time to cut hair. The have a couple of people who do that each week, and it is a wonderful service. As you can see, she did a fantastic job and both my boys are looking sharp again!:






On the medical front: We were fortunate to get a spot in the preferred trial that Dr. Maris suggested. These will be two drugs Kendall has never had, and the hope is they will get him quickly back into a minimal disease state so we can follow it by a maintenance therapy. They are powerful drugs and the side effects can be pretty harsh, but it is felt that he is in great shape and should be able to handle them well. We will again give him back some of his saved stem cells to help him recooperate faster. Tomorrow we return to Chop to have a central line placed and some clearance testing done. We will discuss the trial further with Dr. Maris on Wednesday, and plan to start it the following Monday assuming he passes the clearance tests.

Love to all and thanks for checking up on Kendall!

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Wednesday, February 15, 2006 10:58 PM CST

Just a brief update:

Kendall did very well for all his tests and scans and needed NO sedation.... not even for the MIBG. He laid very still watching Shreck, and actually seemed to enjoy the whole thing. It helped that they had a great child life specialist (thanks Melanie!) with us, and a very gentle and understanding technologist.

As for results, well, the mass in the abdomen lights up on this scan, but didn't on the last one. This could be due to technique differences and/or growth or changes in the tumor. It is a bit bigger, but still not causing any discomfort. They also found a couple of small spots on the legs on MIBG, which are likely small areas of metastasis. The CT only showed the one mass, and the area of the right hip which has radiation damage. What all this means is we need to get some chemo started right away, preferrably something we haven't used before. After that, we may do the MIBG treatment, which uses an internal type of radiation. The goal is to get back to undetectable disease or at least very minimal disease and put him on a long-term maintenance-type med that can be taken at homd. we will be reviewing options over the next day or so.

I have some great photos of the house, and will give a better description when I get back. Be assured that Kendall feels just fantastic and is starting to eat really well and put on weight. His work all looks great, and he is in good spirits. He had fun playing with all the other children here, and he loved the hopsital and its staff. Today a very nice lady gave the boys haircuts (I'll update tomorrow with photos!). They also got to meet some therapy dogs and had a great time playing with them. You would not believe the energy and strength Kendall has. He was up at 6:30am, had his scan, then ran nonstop until we dragged him off to bed at 9:00pm! He ate a great lunch and dinner too. His blodowork and other tests came out great, so we are starting in as good a position as possible.

Thank you to all who signed the guestbook or emailed, and lots of love to our many online friends.

Please send some extra prayers to two of them: Christi Thomas (www.christithomas.com) and Penelope London(www.caringbridge.org/ny/penelope). Both are having a hard time, and their families could use some prayers.

Love to all.

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Sunday, February 12, 2006 12:17 AM CST

Just a quick not to let everyone know whe made it here to the Ronald McDonald House at Philly just fine (very nice of them to let us come a day early and avoid driving through over two feet of snow that was dumped on Long Island!). It is just beautiful here and the kids are having a blast and making friends fast. When I get back I'll post some photos, because this place is just amazing really.

Anyway, we will be in clinic for Bone Marrow Aspirates early tomorrow, CT on Tuesday and MIBG on Wednesday. Good night all and sweet dreams.


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Saturday, February 11, 2006 8:01 AM CST
We are off to CHOP again this weekend. Kendall is scheduled for repeat scans and tests to assess the extent of disease on Monday, Tuesday and Wednesday. With the impending horrible nor'easter on its way, we will be leaving today instead of tomorrow, hopefull avoiding the worst of the weather. The nice people at the Ronald McDonald House in Philly told me it would be OK to come in a day earlier due to the bad weather (for that fact, they strongly suggested it!) It would just figure that NOW we would get a winter storm, after going almost through the entire winter without hardly a flurry. We plan on starting some sort of treatment the end of the week or the beginning of the next, depending on the results of the scan.

In other news, the boys enjoyed the Valentine's Day party at the Morgan Center. They had a great time. Clifford was there to entertain the kids:



And they had someone to paint hand tatoos and blow up balloons, and there was LOTS of candy. They had pizza for lunch and cupcakes! As you can see, Zachary choose to wear his cupcake as well as eat it:



Kendall still feels pretty good and we are hopeful the scans will show minimal disease. Once it is beaten back into a remission state again, the plan is to use maintenance medications that can be taken at home for long periods to keep him cancer free. We also plan on going to Sloan for antibody studies that may help to trick his immune system into fighting the disease too. We have not ruled out other treatments, but are leaning towards those that have less side effects and more long-term effectiveness.

Thank you's are due to all who have helped us out, this time again. I'll try to get some out when I get back from CHOP. Please know you are all greatly appreciated. Just having people who care enough to read Kendall's page and write kind notes of encouragement and prayers in his guestbook is a great help too. I will be archiving some of the older ones when I get back, but will keep them in a file for Kendall. He loves reading them.

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Tuesday, February 7, 2006 6:53 AM CST

It seems to have taken a while, but I'm told this is actually pretty quick in doctor time! We finally have all the paperwork in and will be calling for appointments today to CHOP (Children's Hospital of Philadelphia) and MSK (Memorial Sloan Kettering). There are other places we will likely consult or do trials, but these will be first for now, due to location and experience. I thank everyone for hanging in there with us and for all the prayers and kind thoughts.

I must also send a huge thank you to Nancy and the other ladies at the The Morgan Center for their unending support and love, and also the food! They sent us several frozen meals, all individually packaged, and they came in handy last night. Yesterday, we had the Make A wish ladies come to hear Kendall's wish and bring him a teddy bear and some toys for both kids (really nice toys!). Of course, as is typical of my kids, they were napping at 6:00 at night after a long hard day of play! They weren't too pleasant at first awakening either. However, they eventually settled down (toys helped) and Kendall finally agreed to loudly whisper his wish to "Wishie", his wish bear (rather than actually talk to the nice ladies!) They will grant his wish to go to Disney, as the wish to get on a plane and fly to the sun is a bit out of their reach. Zachary insists that he should get a wish too... he wants to go on a rocketship to the moon. This one will require some thought. Anyway, much thanks to Joanne and Allison. I have no doubt the trip will be fantastic. Now to just figure out when we can go. Here are the boys with some of their toys (huge truck full of cars!) and Kendall has Wishie under the truck (you can see its foot!



I'll have to work on a better photo, they weren't exactly their most cooperative! Still cute though.

In other news, we had a great time with Grandma Barbar and Aunt Kathy last weekend. After much scheduling issues, we finally got together for the holidays!!! (I know, we are terrible). The boys were thrilled to see them and loved the gifts. Also a bit uncooperative with the photo's though (this is becomming a trend!), but here's the best of the bunch:




Sunday (yes Superbowl Sunday), was Neil and my 6 year anniversary and Nicole's (friend's daughter) 12th birthday. They invited us all out to celebrate at Benihana's. Now, I love Japanese habachi cooking, but I have never been to Benihana's before. I was worried about the kids, but once they woke up (they slept on the way there and were a bit grouchy going in... another disturbing trend!) they LOVED it! Thanks Joann and Fran, we had a ball. The boys learned to eat rice with chopsticks:




And I finally got a decent photo of Kendall with my mom:



The boys loved the food and the cooking on the table, and are probably ruined for regular resturaunts. Our authentic japanese chef, Jesus, was very good and we particularly liked the egg juggling. Kendall said they should put rides or a slide in there to make it a really fun place. I'll send his suggestion to management!

Thanks to all who have kept us distracted these last few days. It is hard to have fun at a time like this, but it is so important for the boys. Kendall needs as much "normalcy" as possible. I cannot thank our good friends and family enough. I must also mention my coworkers who have been extremely understanding and generous during this very difficult time. We are truly blessed.

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Saturday, January 28, 2006 10:15 PM CST

This is going to be one of the hardest entries to write, but I've avoided it long enough. Unfortunately, Kendall's biopsy result shows a recurrence of the cancer. We are so heart broken and devastated about this I can't even begin to express it. However, cancer never got Kendall down for long, and he is a strong fighter, so we will also pick ourselves up and fight along with him. He does have a lot going for him, including general good condition, stem cells in reserve and the fact that we caught it early... there were NO physical signs of illness at all! The opening pictures I posted above show Kendall and Zachary two days before the biopsy. The top photo is Kendall at the Long Island Science Museum. We went there on Sunday and the boys had a blast. Here they are digging for fossils:



Kendall didn't like the goggles... I had to practically rip Zachary's off his head! But you can see how healthy he looks.

We left there and went to the Aquarium next door for lunch, because that was where Kendall wanted to eat. The food there isn't great, but the boys love to watch the sealions and feed the sand sharks. Here they are getting "flapped" by a very friendly sealion:



Back to reality, Kendall's journey will not be an easy one. He is recovering well from surgery, and getting back to his old self. He was pretty happy to be back at "his" hospital, and enjoyed seeing the staff again. We left on Friday, and on the way out he took a ride through the bridge around the Tower floor (where the offices are) in the little cozy coupe car with Zachary in his car close behind. I dread starting chemo, radiation, and further testing and surgery. He feels so good and doesn't really understand why we keep taking him to the doctors where they give him medicine that makes him sick, or do surgery that hurts. He is so trusting and a really good patient. He is very forgiving and tolerant, but as he said while we were waiting for the biopsy, "It's not fair!" We all agree.

We return to clinic on Wednesday to go over our options. They are consulting with the top neuroblastoma experts in the country, including those at Sloan Kettering and Children's Hospital of Philadelphia. We will likely be heading to one of those places shortly for consults soon. There are other facilities as well. There is a group called NANT (New Approaches to Neuroblastoma Treatment) which is a consortium of the top NB experts who have put together the best trials for refractory/relapsed disease. They are his best chance and we will leave no stone unturned. Our doctors are preparing the final documents and summaries to be sent off, and have the scans all ready to be mailed or emailed (they are mostly digital). We should have a direction and a plan shortly.

I had given the boys some fortune cookies on the Saturday before the biopsy and their messages seemed particularly appropo. For Zachary, the cookie read: "Patience is the key to joy." This is true as Zachary ends up spending most of his time waiting to see me and Kendall while we are in the hospital. Kendall's was actually a downright spooky: "Stop waiting! Buy that tickent and take that special trip!" I've been putting off the planning of his Make A Wish trip for months now. I meant to go before the holidays, but we got caught up with other things and I kept putting it off. I will likely never forgive myself for this, and no trip could ever make up for the lost opportunity to take him when he was feeling his best. I've taped both messages to my computer. I have no doubt someone was trying to tell me something. I already have an appointment for a visit from the MAW volunteers to plan Kendall's wish, which will be a nice trip to Disney (something we would otherwise not be able to do).

Thanks for reading my long rambles. It was so hard to start this message, and just as hard to finish it. Thank you to everyone who prays for and cares about Kendall.. your kind words warm our heart and give us hope.

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Sunday, January 22, 2006 7:01 AM CST

We got the scan results back on Friday, and it wasn't as good as we hoped. Something is showing up on the CT scan that they feel warrants a biopsy to check it out. The doctor said it could be a lymph node. It didn't show up on the MIBG scan (a nuclear scan sensitive to his type of cancer), which is good, but it is worrisome. I'll be in the clinic on Monday getting the preworkup done and on Tuesday for biopsy, although this may change. I'll know more on Monday night when I get to talk to the doctors in person.

Otherwise, Kendall feels great! We spent the day at Tangier's Outlets yesterday, shopping for shoes which we did not buy. I got a few outfits for the boys instead. We had lunch at the food court and Kendall ate half a chiken Quesadilla, two chicken strips, half a bag of Friench fries, and downed a whole chocolate milk. That was after a large breakfast of cereal, and blueberries with yogurt. Not to mention snacks. His weight has been steadily rising, and he is now over 36 pounds (16.4 kg) and about 39 inches! The boys played on the huge maze and slide apparatus at the McDonald's there for almost 2 hours. I had to practically drag Kendall down. He was having a ball running and climbing. Not even a hint of tiredness. Zach slept in the car on the way home. Kendall chatted with me the whole way!

Here is a cute photo of the boys from their friend Jessica's birthday party at Scoops (a local ice cream parlor):



They had a ball there a couple of weeks ago. They LOVE Ice Cream! They had great holidays in general, and really love their new toys. They are especially fond of the Batman Bopper (a large inflatable punching bag).. probably the least expensive and least technical of the lot! But overall we've been having a lot of fun lately and the boys have been well. I've been interviewing for new jobs, which I will probably put on hold for a little bit until I see what's going on with Kendall. None of the ones I interviewed for as of yet were jobs I wanted, but I learn a lot from each interview.

Lots of love to everyone. Thank you for checking in on Kendall. I'll update Monday and Tuesday with news.

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Friday, December 30, 2005 11:54 PM CST

We had a very full day to say the least! I took the boys to the New York Botanical Garden to see the Train Show and Thomas the Train. We wanted to see the puppet show (Little Engine That Could), but it was too late by the time we got in. I had no idea it would be PACKED!

We got a late start around 11 a.m., and I first went to my mom's to pick up their double stroller. It wasn't there. I have no idea where it is, probably in the other house, but it wasn't where I thought it would be and we lost about a half hour to start. Then I needed gas and money. Almost as soon as I left the gas station, the boys woke up and had to go to the bathroom right away. So I stopped in Mineola at the Starbucks, and let them use the potty. There went another half hour or so. We did get some nice hot chocolate, then were back on our way. Still, I figured we'd be in by 1:30 the lastest. WRONG. We hit a bit of traffic as expected, but what I didn't anticipate was the line to get into the Gardens. An officer came to our car at one point to explain there was no more parking except valet the cars, that was the reason for the long delays. We waited over an hour, but it was worth it. When we got to the front of the line around 2:30 or so, another guard handed us free tickets to the park and all the events! (It would have been close to $30.00 for the three of us otherwise). Cool!

The line to get into the puppet show was just too long. We never would have made it by 3:00, so we went to see Thomas first (see picture above). The boys were THRILLED, but a bit disappointed that they wouldn't get to ride on him. I'll set up a "Day with Thomas" trip soon. Still, they were excited to sit on his buffers and have their photo taken.

We walked through the children's adventure garden and they had fun climbing in the display of a Bee's Vision:

The loved walking through the gingerbread house. It was cold though, and they were happy to go inside and learn about the plants that make up gingerbread! They made little field guides with bits of ginger, clove and cinnamon. They particularly enjoyed decorating gingerbread cookies! I wanted to save them to show Neil, but they were gone in two seconds flat. For some reason, they only gave the kids cookies, none for the parents:(

We left there and made our way to the train show. The line was still a bit long, but we were entertained by a nice acapella singing group. If you've never seen the Botanical Garden's train show, it is really a very special treat. One bit of advice, don't go during the week between Chrismas and New Year's when all the kids are off! You first have to walk through the indoor Rain Forest and Dessert. It was fantastic. They boys were a bit nervous, especially after recently watching the Wizard of Oz for the first time. But once I convinced them the trees were not going to throw anything at them, and there were no spiders or snakes, they loved walking through the paths and up over the catwalks through the rainforest canopy. The train setup itself is so beautiful. Scenes from New York City done with sticks, acorns and leaves and such. It is hard to describe and the photos don't do them justice, but here's a picture of the boys reaction:


By the time we got through the display it was 6:30pm and pitch dark out. I had parked near the show, but when the guard said they were keeping the Cafe open until 7:00, I decided to get the kids something to eat. Other than some fruit snaks and an iced gingerbread cookie, they really hadn't eaten much! So we went to the cafe where they had hot dogs, Raisin Bran Crunch cereal, and some Gatorade. Kendall ate both hotdogs and Zach had the buns!. I called Neil so he wouldn't think we disappeared, and while I was talking, Kendall kept banging the table with his foot. I told him to stop and he banged harder, causing the Gatorade bottle to overturn and SOAK him! Unbelievable. He took his pants off right in the cafe. I first tried to stop him, then realized he'd be less cold with dry legs than wet pants. It was a long walk back to the car. I had to cary him and our left over food. Zachary was good and carried my other bag and walked nicely with me. It wasn't until I got all the way back to the car (a rather long walk too) that I saw the security vehicle riding around. I have no doubt if I asked one of the guards I saw as I left they'd have arranged a ride for a woman with a half-naked child in the freezing cold! DUH. Sometimes the wheels just get jammed in my head.

Oh well, Kendall took it pretty well actually. I had a change of clothes in the car. Next time I'll take at least my single stroller in with me!

With that I'm off. Happy New Year to all. I'll be working, but my boys will be out partying the night away with my friends! (figures). May next year bring health and happiness to all.

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Monday, December 26, 2005 10:06 PM CST

Merry Christmas and Happy New Year! Also Happy Hannukah and Kwanza for those who celebrate them.

The boys had a great time at their Christmas party for the Morgan Center. Of course, I missed it because I had to work, but I hear it was really nice. They got some nice presents too! We enjoyed Christmas with their cousins:




They all helped pile the presents up into one big heap. Then they proceded to try and make it higher and higher, until they were all but throwing packages all over.


The parents eventually gained controll (not easily!), and they had a wonderful free-for-all of package opening (organization was just lost on them). They loved their gifts and had a great time playing together. Of course, no one got to sleep early that night! The next week was Christmas, and we spent the morning at home opening piles of gifts again. Santa was exceptionally generous this year! They went to Nonni and Poppi's summer house after that, and had MORE gifts and a great dinner. We were thrilled to spend the day with our good friends Joann and Fran. Poor Kendall had a bit of a cold, but he still had fun. Zachary ate too many cookies and complained of a tummy ache when he got home. No shock there!

But this holiday would have been special even without a single gift. It is so wonderful to see Kendall running and playing with is brother and cousins. He gets bigger by the minute and I'm sure his doctor's visit this week will prove him to be healthy still. We will be scheduling scans for January (probably the end of the month). It is now officially one year out of the second transplant and he is doing awesome. That is the best gift of all.

Of course, I also love my new wallet and printer:)

It isn't too late to give to Lunch for Life (click on the fork ribbon above) if you haven't done so yet. A small donation, $5.00, the cost of a typical lunch, can mean so much to the researchers desparate to find a cure for this dreaded disease. I want to express my heartfelt gratitude to all who have given already.

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Wednesday, December 14, 2005 10:22 PM CST

We had a great weekend in Washington DC. The drive was a bit long, but we managed OK. The hotel we stayed at (Hilton Garden Inn, Arlington) was great. The rooms were huge and the boys loved the view of the Verizon building (see photo of the boys on the window above).

We went to the Smithsonian, and saw the Museums of Natural History and American History. We made the mistake of taking them to one of the IMAX shows. We figured they'd get a kick out of the 3-D effects, and chose "Into the Deep" as it was short and sounded nonthreatening. Before the show they were thrilled and excited:



However, they were terrified by the show itself. The 3-D images did fascinate them as expected, they reached out to try to grab fish and seaweed, but the crabs and starfish were overwelming, and the moray eel was just too scary. Thirty dollars wasted! Oh well. They loved the racecar simulator in the American History museum, but next time we will go somewhere else to eat.

The tree lighting was beautiful. There was a touching reading of Alex Scott's book by her young brother. Some great musicians, and Liz and Jay Scott told Alex's story and just touched everyones hearts. They handed out signed books to all the kids, and there were toys for the kids and a quilt for the family. There was also food and treats, and a great Juggler to entertain everyone. The tree itself is impressive. It is in the Old Post Office Pavillion, and is HUGE! It is COVERED with ribbons. There must be thousands of them. It breaks my heart that each one represents a child with cancer (or an angel).



Of course, the kids were exhausted as usual after a long day at the museums. I don't think they got as much out of the speakers as we did:



But they woke up in time to see the tree lit and get their toys and treats! Neil had a bit of a mishap, and somehow ended up splashing Thousand Island dressing all over himself, a child, and another parent. We then proceded to get on the wrong train back to the hotel and ended up in a closed Arlington Cemetary at 10pm, without another soul in site! But we got back in the right direction and were back in our room in time for the kids to not sleep! They are so off their sleep schedule now it isn't even funny. We got lost on the way back trying to get a view of the White House or at least a parking space by the Visitor's Center. To give you an idea, we left the hotel around 12:30 and were back in East Meadow at 8:30pm! I've always said we were travel challenged... this was actually one of our better trips!

After all the money, time and effort, what was Kendall and Zachary's favorite part of the trip? ---- Riding the Metro. Yes, the DC subway system was what stuck so much in their minds when asked. Kendall said it was faster than Spencer (one of the Thomas Trains)... high praise!

This weekend we have my brother and his family coming for Chrismas, and the Twin's Club children's party. I'll update again after that. In the meantime, don't forget to send your Lunch for Life donation! Enter the giving tree code of 14393 in the box on the upper right of the page. I am so very greatful for all who have donated already! Thank you all.

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Friday, December 9, 2005 9:19 AM CST

Well, we've had a quiet week. I kept the kids from school on Wednesday because I thought they weren't feeling so good. Kendall was complaining he wasn't feeling good, and Zachary's cheeks were so red! I was worried they had a fever starting. But they were better by the afternoon. Zach is prone to red cheeks from going outside. A little Eucerine seemed to cure him. Still, I think they needed the day off. I was feeling like I had a cold starting too, so it was probably better.

The Mother's Kiss party was a lot of fun. The boys each got a great present from Santa: Zachary got a game called "Don't Wake Daddy".... (I think they know us well!) Kendall got Lincon Logs. They love them! They were a bit tired as we were up late the night before. It was "Girl's Night" so my friends all left the kids with their daddy's at Tom and Michele's and we went out for a nice quiet dinner! Of course, my kids waited up for me! It was after 11 when they got to sleep. But they still managed to dance and had a great time on Sunday.

We are on our way to Washington DC for the lighting of the Candlelighers Children's Holiday Cancer Tree. Kendall's name will again be on a ribbon on this tree that thousands will see over the next month. We will be stoping at the Smithsonian too, and I'm sure it will be a great trip. The weather is supposed to clear, so hopefully it will be nice out. I've got to finish getting ready, so I'll update again when we get back.

Don't forget to stop by Lunch for Life to donate your lunch money for Neuroblastoma Research. My giving code is 14393. Just type it in the box and you will be directed to the right tree for Kendall! They have raised over $50,000 in 8 days. There is almost no overhead, so almost all the money goes directly to research. You can read about it more on their site.

Love to everyone and thanks for all your generosity!

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Wednesday, December 7, 2005 8:09 AM CST

The boys had a great time at the holiday party for "A Mother's Kiss" on Sunday. I have some cute pictures and will update the photos later in the week maybe. I just don't feel in the mood right now.

I am saddened by the death of wonderful young neuroblastoma warrior, Robert Psareas. He was 8 years old and a great kid with a beautiful smile. He was originally treated at about 4 years old, went into remission, then relapsed earlier this year. It is so very sad. My heart just breaks for his family. Please keep them in your prayers.


That's all for now. I would like to thank all of you who have given to Lunch for Life in Kendall's honor. www.lunchforlife.org. I'll update you more about that at a later time.

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Wednesday, November 30, 2005 11:32 PM CST

We had a great thanksgiving this year! Well, at least it was better than last year. Last year Kendall was just finishing his first transplant on Thanksgiving (he was released the next day I think). I actually worked that day, a mistake I will NOT make again! I was so miserable, because I really needed to be with my family and was not. It was just that I needed to get a few days of work in and I figured I wouldn't want to celebrate holidays with Kendall being so sick. I then realized that those holidays were even MORE important to me....I had even greater reason to celebrate. But I already had agreed to the days, so it was too late.

The boys enjoyed seeing their cousins. It is great to see them all play together! Andrew is 4 and Alex will be 2 next week. They are great kids and a LOT of fun. We look forward to their visit for Christmas, and hope they will join us for our twin's club party! They also love their Uncle Nick and Aunt Liz, and had a great time playing with them. We miss them already.

They had a great feast at the Morgan Center for the boys. They dressed as indians and did a very cute dance:



As usual, Zachary really got into the act. He is such a ham! Their good friend Daniel is in the background on this one. Such a cutie!



On Saturday we took Aunt Gladys out for Thanksgiving dinner at her favorite resturaunt, Red Lobster. The boys had a great time. Not as great as when they went to Fun For All later with their friend Jessica! (I had to work).

On Monday the Blood Drive at our church was a huge success! When I left they had over 55 pints collected (goal was 36!) and there were still people lining up to give! I don't know if they always do that well, but maybe my talk about Kendall and the need for blood helped:) I hope so. My anemia seems to be cured with iron supplements, and I was able to give with no problem this time.

As I said, we are really looking forward to these holidays this year, although we are still a little sad that Mimi and Grandpa Reggie won't be here to enjoy them with us. The boys seem to be handling it well, although they do sometimes make comments that indicate they do miss them very much. I'm also really missing my dad right now again. He loved Christmas and he was so looking forward to having grandchild to spoil. Their first Christmas he got to spend with them was so great. I never expected it would be the only one.

As I said, I won't be working these holidays (except for Chirstmas Eve, late though). I realize now how important they really are. Blessings to all.

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Monday, November 21, 2005 10:21 PM CST

We had an AWESOME weekend! I got a call on Thursday from Geri Garafalo of "A Mother's Kiss" that they had 4 tickets to see "Beauty and the Beast" in New York, and would also pay for the train ride! We went early on Saturday morning, and the boys really enjoyed their first train ride and trip to Manhattan!:



The play was absolutely beautiful and a lot of fun. Even Neil liked it! Zachary was scared at first. He didn't like the Beast's castle and the dark scenery and the loud candle and clock. The beast terrified him and Neil took him out crying. They stayed resting in the lobby, while Neil tried to talk to him. Then Kendall and I went out just before intermission and I talked him into giving it another try. He toughed it out and summoned up all his courage, and was very proud of himself that he made it to the end of the show. He liked that the Beast and beauty became friends and he turned into a nice prince.

During that intermission, the boys were snacking on Pringles. It was truly a junk food day!:



The boys finally agreed to take a picture with me just as we were leaving the show:




We were going to walk around the city a bit, but it was getting dark and the boys were pretty tired. We did go into Toys R Us, but it was way too overwhelming for all of us and we just got some soup in Penn Station then headed home. As you can see, Kendall and Neil were quite bushed!



About a minute after this photo, Zach fell alseep on my lap. I couldn't get a picture because if I moved my arm he'd have been on the floor! They were all so cute. We got home and the kids enjoyed a visit from our friend Tom who came to watch some boxing, then got to sleep around 11 pm! I'd love to say this is a record for them... but sadly.. no.

They were pretty tired for Sunday School in the morning, and Kendall managed a nosebleed just as we were leaving. It was minor and probably due to the dry air. I also had one (the first in a long time!_ We were late, but we made it and the kids made crowns for "Christ the King" Sunday. They were very proud of their crowns and quite cute. (I'm adding the picture on top in place of one of the Halloween photos). After church, the boys went home to foil Neil's plan of actually removing the leaves from our front lawn, while I went back to church for a "Crisis Support Team" class. I joined the team because through all I've been through I felt like I didn't get as much support from my church as I would have liked. I didn't ask for much of course, but sometimes people need help without having to ask for it. The Pastor is one person and just can't be everywhere at once. So he formed a team, and I joined and promptly missed the first two classes due to illness in my kids, then in my husband. I made it to the third and that was the most important (I'll make up the others after the holiday... it is just a video and discussion).

I got back and the law was about 1/4 done.. Neil looked exhausted and hungry, and the kids were watching Shreck and "resting" from their favorie activity of running through piles of leaves for 3 hours. I soon got to work on the lawn and the kids and Neil came out and helped, and we bagged leaves until it got too dark. Our lawn is now about 1/2 done. Oh well. At least we had a good go at the backyard last weekend.

Thanks to all who keep up with us. Stop by www.amotherskiss.org sometime and give them a thank you for all they do. Besides little trips like this, they also paid for a lot of our miscellaneous expenses (tv, parking, co-pays, etc). They hold a great holiday party each year. For that fact, you can see a picture of Neil and Kendall at their last Holiday party on their website! Their website is still under reconstrustion, so there isn't much there, but you can email or send a small donation if you want.

By the way, I have a large fundraiser coming up in December specifically for NB research. Emails will explain!

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Monday, November 14, 2005 0:51 AM CST

Well, they did it again. I let the boys roll in the leaves. I'm not even sorry about it! I was going to take the boys to Riverhead, one of the favorite places, but when they walked outside they immediately started playing in the leaves on my front lawn, which is now more leaf than lawn. They darted around back and one of them found the rake and started raking. They wanted a pile. I asked if they'd rather play in leaves or go to the aquarium. The chose leaves. So I raked. They jumped and ran. They played T-ball and soccer. They played in their little house. I raked some more. Before I knew it, half the yard was done. So I called Neil out to see if he wanted to help bag. Being a man he spent the next hour getting his leaf blower/vac together and ready to go. But I was happy enough to have the backyard relatively leaf free. He bagged most of them, but as it was getting dark I helped grab some piles. After a nice dinner and bath, the boys were in bed early (7-7:30!).

We had a pretty quiet weekend. On Veteran's day I went with my friend's daughter Nicole to Tanger's Outlets and bougt the boys a few needed items. I couldn't find the footie pajamas in size 5T, even at Carter's outlet (they had 4.. they had 6.. no 5!!!!). So if anyone sees them in their travels....let me know! My kids love PJ's with feet. On Saturday I took them to a craft fair with my mom, her friend Joann, her daughter Fran and her daughter Nicole (again!). I can't say they liked the craft fair much... they were a bit tired, but they love Nicole! I had to go off to work while everyone else went to lunch. Mom dropped two sleeping comababies off to Neil, who tried in vain to wake them, then gave up. Of course, they woke up at 7 starving, then were up until close to midnight!

So you can imagine how pleasant they were getting them up and ready for Sunday School and Church at 9:15 (well... 9:35... who's counting!). I was a bit upset about being late. Today was Rememberance Sunday in our church, and I had a lot of people to remember. It is the day we honor those who have passed during the last year, and before. They have a beautiful wooden cross covered with wire mesh, and after the names are read (they have a list submitted) family members take white carnations and place them on the cross. By the end of the service, it was almost full. They even let the children place a flower too when they came back in after Sunday School. The kids were relatively good in church (once we got there and got over the "I'm not going to Sunday School!!!! flack), and we ended up having a nice afternoon.

I'm planning a trip to Washington DC on December 9-11. The Candlelighter's Kid's Cancer tree will be lit on the 10th in a special ceremony, and we decided to take the kids. We also plan on going to the Smithsonian. If anyone has any hotel suggestions, let me know. I'm still working out the details.

I'll end with a few more photos. First, Here are Kendall and Zachary on their first fieldtrip...it was to Suffolk County Farm and they had a great time.... even though it was raining!



Dont' let them fool you.. they were having a great time!




And here is a cute picture taken at the Sayville Harvest Festival. They are looking at some ducks and bunnies:



Again, thank you to all who keep checking on Kendall!

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Wednesday, November 9, 2005 11:01 PM CST

Go to Journal History to view the previous Halloween photos!

Well, the boys are feeling much better. Zach was pretty much OK by Sunday afternoon, but Kendall was still spiking fevers up to 104 on Sunday night. By Monday morning it was gone, but we kept them out of the Morgan Center just in case! It was so thoughtful of the boys to plan this illness around my work schedule!

We went today to the Center, but a mysterious cough developed in Kendall when he went into the class. It was not there in the morning (or I would not have brought him), but started as soon as I was talking to someone else and not paying him attention. Juice didn't seem to fix it. I went into the lounge area, and one of the teachers brought him out saying he was coughing a lot, and they had at least one neutropenic child and one that just got out of a two-week stay in the hospital. Zach, was fine. I asked Kendall if he wanted to stay with me and draw. They brought his box out and he did his project and colored. I noticed that he seemed to cough more when the teachers walked by.

We left there and I went to McDonalds with the boys for lunch. Strangely, Kendall did not cough even once while there and not at all the rest of the day. I asked him outright if he really had a cough in school or was he just pretending. He actually told me he was faking it! The manipulative little beastie! He said he didn't want to go to school and be away from me. He was upset when I left him at my mom's on Monday and his other program on Tuesday too. He seems exceptionally clingy lately. I'm not sure why. It could be just from the recent illness, or the fact that I basically spent about 48 hours straight coddling them while they were sick. But I think it may be related to my increased worked hours, especially on the weekends. Maybe it is a combination. But now I will have trouble with him next time in class (next Wednesday). I don't think he will give my mom any trouble on Monday, because that is a different dynamic. It is when I am there that there is a problem. We'll see.

There is also the possiblity that he is allergic to something in the school. Besides the coughing, he was itching his nose and eyes and his ears too. There was a slight bit of clear fluid leaking out of the nostrils at one point too. We'll see. I don't think he was sick at all though and that is the point. He really was TOO good about sitting with me while he could hear the other kids playing.

Thank you all for checking up on Kendall. Your caring and concern means so much to us! I have a couple of new photos to share:

First, here is Zachary as '"CatBoy" Takes a Bath!'




Here are our three intreped pumpkin pickers in front of an old coach at the farm, the weekend of Halloween. We went to Jim, Kathy and Jessica's (the red-head below)house afterwards, where they helped us carve our first Jack-O-Lantern (sorry, you have to wait for them to send me the photos!).

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Saturday, November 5, 2005 10:00 PM CST

Well, we've had a great Halloween as you can all see! I supose I overcompensated a bit due to the lack of holidays last year, but I'm not sorry one bit! Here is just a favorite picture from our Pumpkin Fest trip with our friends Jim, Kathy and their daughter Jessica:



As you can see, the kids are having an absolute blast... and this was just on the bus from the parkinglot!

We went to three different holloween parties! I'm so glad Kendall decided at the last minute to be a Power Ranger like Zachary instead of a Ghost! (although, I'm sure he would have been the absolute cutest ghost ever!



Instead of trick or treating around our block (gets dark and too much walking!), we went to the Halloween Festival in the village of Stony Brook. It is very cute and the boys had a great time! My mom and Fritz came to walk around the town with the kids. The village is very picturesque and we trick or treated the stores. There wasn't a whole lot of candy, but that is just as well. The kids had a great time and didn't feel shorted on candy at all. We got a lot from the various parties we went to! The local dance school put on a great show, but it was very crowded and hard to see. The kids seemed to like the music though. We played games in the town square, and the kids had their first try at bobbing for apples (I know, disgusting!), potatoe sack races and pin the tail on the cat, amoung others. They really enjoyed that and great prizes were handed out (well, great for a 3-year-old!).

This week the weather has been nicer and they have been outside a lot. So of course, they decide to get sick! The day before our friend Paige's first birthday, and both my kids have raging fevers. Kendall's got up to 104.5 this morning, and Zachary hit 103.2 right before bed. They've been kept comfortable with Tylenol, and I'm just hanving around and watching Kendall for any signs of serious complications. So far he seems OK. I did manage to get my summer stuff cleared out of the draws and some other organizational things done, so it wasn't a total waste.

Other than that, the boys feel great and are having a great time. I still have to get around to the swimming classes. I did contact Make a Wish though, and have to return the representative's call on Monday. Hopefully we can get these kids off the Island for a while soon!

Love to everyone. Thanks for keeping up with Kendall and his progress. I will end with one last picture (sorry dial up people, but I can't resist! I did cut the resolution a bit).

Power Rangers to the Rescue!

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Saturday, October 15, 2005 5:16 PM CDT

I was hoping to have new pictures for the update, but I'm having some printer problems and I use my printer to get the pics off the chip. Hopefully I'll have it fixed soon!

The boys had a lot of fun at PumpkinFest over at the Suffolk County farm. They went on great pony rides (got to wear a helmet, and the horses were so beautifully decorated by the local 4H club!), and played minature golf. It was crowded, but a nice day. Lots of animals to see and some nice activies. They had their friend Jessica and her parents with them and really enjoyed the lovely weather.

Unfortunately, the lovely weather pretty much stopped there! It's been rainin nonstop for the last 8 or 9 days. We've had to be creative with the indoor activities! I'm surprised neither of them has caught a cold yet. Being in such close contact indoors for so long it is bound to happen! But so far both are healthy and happy.

Kendall is getting bigger again! He was weighed last Wednesday at 15.4 kilos! On his birthday he was about 14 kilos, so that is a gain of over 3 lbs since May. About a month ago I was worried because he seemed to be losing weight. On September 28th he was 14.6 kilos, so he gained 3/4ths of a pound! He also has grown and is now about 97cm (he was 93cm in May). Kendall eats really well and has been very active. His CT scan done on Monday was negative (yipee!). I'll get the results of his MIBG scan on Monday. However, all his blood markers and other tests have been normal, and they would be surprised if anything showed up on MIBG (that's the nuclear scan that is specific for his type of cancer). Assuming these are negative, we will be not scanning again until January!

The boys have been having a great time and we are going to start planning a trip soon I think. I don't know to where, but now that he feels good I want to make sure to have lots of fun. I also plan on doing more swimming with them. I'd like to check out lessons so that they can be safer in the water. They are getting the hang of swimming with the little bubble vest on (Safe-t-swim vest).

We went to visit the boys great grandfather Pop Pop and their great aunt Gladys at the nursing home this week. The boys were so happy to see them. They brought pictures they made in school. For PopPop they brough the pictures they drew of whales in Sunday School. These were to illustrate the story of Jonah. They called their whales Zanzibar! Those who know my grandfather know that he loved to tell stories of these little kids saved by a magic whale named Zanzibar. The kids' names were always the children he was telling the story to, and he made it up as he went along, although there were some common elements to the stories. I have kept that memory alive by telling these storeis to my children and letting them know that it was PopPop that made them up.

Must get back to work now. Hopefully I'll have new pictures up soon! Thank you again to all who keep reading my updates and signing the guestbook. We are always so touched by how many people care about Kendall.

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Saturday, October 1, 2005 8:33 PM CDT

We had a nice week and a great weekend so far! Kendall is feeling better each day and growing stronger and stronger.

The boys enjoyed the first day of the Morgan Center school on Wednesday, and were on TV! News 12 did the report. I didn't know they would be there, but they did mention the boys by name, and you can see them playing and bouncing down the hallway as we walk out. I have it on tape, and Neil will put it on DVD tonight. Then I just have to figure out how to link it to the website so people can see it. Kendall and Zach were so thrilled to see some of their old friends and to meet some new ones!

We went to clinic right after school (well, after rolling down the hill a couple of times with Eric!) and Kendall has not actually lost any weight by their scale. He has grown taller though! That is probably why he looks a little thin. We will encourage him to eat a bit more (although he does eat pretty well most of the time) and not worry about it right now. He has scans coming up, and I should have the dates by Monday. We are only doing the CT and the MIBG (nuclear scan) as he just had a recent negative bone marrow biopsy and is showing no signs of bone pain or problems. I'll ask about doing a urine marker test too.

We bid a sad goodbye to one of Kendall's oncologists, Dr. Mueller. He really liked her a lot (he likes all of them actually!), and seemed sad that she was leaving. She is moving on to practice in California. We wish her well of course, but will miss her. She was the only one who could understand when Kendall spoke with his feet:)

Today we went to the Fall Harvest Festival in Sayville. What a great day! I highly recommend it to anyone in the nearby area. I think it is just today, but maybe tomorrow too. It was free to get in and the area is so beautiful. There was live music, and a small animal petting area (only $1.00 for a cup of food, no admission... a bargain!). They had pony rides at $3.00 per ride, it was short, but the kids sure enjoyed it! I have some cute picture's I'll post tomorrow night. They also had a few little rides, a mini carousel which was just the right size for my boys, a huge inflatable jumpy house, which they got to go in a long time and really liked, and a haunted house on the trailer. Were my kids scared? Of course not! It was very dark, and I walked through holding their hands. They had lighted up mosters that made some loud noises. The noises startled them a bit, but didn't scare them. They wanted to do it again.

We had lunch over at Joelle's Cafe. It was a bit pricey, but I wanted to go there for nostalgia purposes. My mom used to own it years ago, when she called it the Sayville Cafe. The place is a little different, but not much. The old tin ceilling was still there, and really nice looking. The staff was very nice and the place was busy, but well organized. The food was great. I had a nice salad with grilled veggies and fresh mozzarella. The boys had the best mozzarella sticks I've ever tasted and some chicken fingers. After lunch we went for their first horse drawn carriage ride! The boys had an absolute blast, and were so good about waiting on line for their turn.

We had beautiful weather, and it was a great day. I was sad to go to work, but the boys were exhaused after all that activity (Kendall rode in the stroller to the car, and I had to carry Zach). The slept well and last I heard were enjoying a rousing game of "Dragon Dragon" with Neil (it's kind of like tag with a lot of roaring and laughing).

I must get back to actual work now. Hopefully everyone is enjoying the fall. Thank you all for checking in on us. Your kind thoughts and prayers are so greatly appreciated.

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Saturday, September 24, 2005 10:20 PM

I'm here at work and figured I'd finish updating about Kendall's stem cell collection. I'm always amazed and humbled by how well my son tolerates all these horrible procedures with so little fuss! I swear I've seen grown men not handle things as well!

I'm not going to bother with all the details, but basically they didn't get enough cells the first day. I was so disappointed, after all the shots and 4 hours on the machine, we only got about 1.3 million cells. They wanted about 5 mil! It was decided to give him MORE shots and try again the next day. At least they let us stay in the PICU instead of moving him back and fourth. He lost his IV in the middle of the night, and they couldn't get another one in him after several attempts. So he got extra pokes for blood draws along with having to lay still for hours and having other procedures, often with screaming and crying, going on in the same room next to him (behind a curtain).

Kendall's comment on the whole thing when asked how his day was: "There were a lot of boo boo's today (spoken with great seriousness), but I have an Elmo bandaid!" (with big smiles)

You've gotta love these kids.

We were sorry to miss the opening day party at the Morgan Center. Mom took Zachary, but he was very distracted and just wanted to go to the hospital to be with Kendall. When he got there, he was so much happier. We put the kids in the waggon and dragged them around, and Zach road in the car next to Kendall's stroller. They had fun in the playroom learning how to play Candyland. Later when Neil came, we went back into the PICU room and the boys both got into the bed and watched "Tonka Joe" while waiting for the results. They looked so cute laying on that hospital bed side by side!

We finally got the good news that they got 3.4 million cells that time, which was enough when combined with the first day's collection. Thank God. I don't think I could have done another day.

Kendall was kept quite that night, and he had a cold so we kept him from class the next day, but he was fine by this morning. I took the boys to the Sweetbriar Nature Preserve in Smithtown to see the butterfly house. It is a very pretty preserve with some nice displays, but small. Kendall was thrilled with the butterflys swarming all around him, but Zach was a little scared of them. We had a nice walk through the woods pointing out "itchy ouchy" plants all along the paths (poison ivy). The boys were interested to see some of the poison ivy had already turned red! A sure sign fall is coming. Lets hope we didn't get any rubbed on us.

It was a beautiful day today, and the boys enjoyed a nice fattening dinner at Ruby Tuesday's tonight with Neil and our friends. Tomorrow they are looking forward to Sunday School again.

Thanks to all for thinking of us and keeping us in your prayers.

I'm keeping the prior update up so everyone can enjoy the pictures a little longer.

Thursday, September 22, 2005 6:38AM CDT

Well, we got the cells eventually. It was rough though. I'll update about that later.

I wanted to share some new pictures of the boys. The one at the top of the page was from their first day of Sunday School. They just loved it. That is the fish pond/fountain outside our church. The boys were fascinated with it.

Below I have some of the first day of Nursery school pictures (also at the church). It is just a short program.... only a couple of hours two days a week. I hope we will be able to continue it. Already I have had to keep Kendall out this week!

This was the boys in front of the school... I couldn't get them to look at me.. they were too facinated by all the other kids!




As you can see, Kendall takes his school very seriously:


As you can also see, Zachary does not!:



I'll update later about yesterday.. but the end result is, Kendall is fine and we got our cells. That is all that realy counts.

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Monday, September 12, 2005 9:20 PM CDT

Just wanted to update everyone (warning....lengthy!). Kendall is doing great. He and Zachary started their first day of Sunday School yesterday, and just loved it. The teacher, Mrs. Wolfe, is very nice and has a good way with the kids. There are two other three-year-olds right now, so it is a nice small group. The boys will be starting their first day of nursery school at the church tomorrow. It is also a small program, only two mornings a week. We will see how it goes. If he keeps getting sick I'll have to take him out of there. His immunity is still on the low side of normal and is expected to be for a while. So far he seems to handle illness well, but we've been very lucky and do keep him away from noticeably sick people. I thought this program would be OK because it is very small, and it is only a partial day class.

Sadly, today was also the day we said our final goodbyes to Reginald Jackson, the boys' grandfather. He was truly a wonderful man who will be missed by many. I'm so glad my kids had a chance to know him, no matter how briefly. I'm also thankful that he had the chance to be the proud grandfather and to see his grandson make it through the worst of treatment and survive. I wish we had more time, but it was not to be. He was a WWII vet (Navy) and we were honored to have a friend of his in the Marines to do the presentation of the flag at the service at Calverton. My boys loved watching the ceremony as the two naval officers folded the flag and handed it off to Mr. Sherman, who presented it to Neil. We had a nice dinner with Reggie's sister Audrey who flew up from Georgia and her neice Janet, my parents, my boys and our good friend Danny. It meant a lot to Neil to have such wonderful family and friends around. Yesterday we had quite a few family members and friends make long drives to come and pay respects. We thank every one of you. I'll try to get the notes out after Kendall's procedure next week. My mom has arranged to have Reggie's name added onto the WWII memorial at Eisenhower Park, as well as my grandmother's. My boys love to visit the memorial, and look at their Grandpa Frank's name there. I usually take them there instead of the cemetary. For some reason, I just can't picture him in a cemetery. I like the park better, it overlooks the driving range at the golf course. Now I will have new names of angel soldiers for them to find. I'm going to work on some memory books this winter in my nonexistant spare time. If anyone has any photos or stories they'd like to share, please let me know.


This is Kendall and Zachary a few months ago at the memorial, standing near their grandfather's name (Frank Bongiovanni). It was actually taken on the day my grandmother passed away, I got the call a few minutes after taking the photos.


Yes, THE procedure! We will be doing a collection of stem cells from Kendall next Tuesday. Hopefully we will get enough for one or two transplants or mini transplants if we ever need them. (Of course, we pray we never need them!) I'm to start him on GCSF shots this week, then we will be admitted next Tuesday for collection. They will put a temporary catheter in him (under anesthesia) and he will be hooked up to the pheresis machine for a few hours. It doesn't hurt, but it is annoying to have to stay still that long. I'll have to get some new movies!

Thanks as always to everyone who stops by and checks on us. I'll post new pictures later this week.

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Wednesday, September 7, 2005 7:26 AM CDT

Well, our ups and downs are still up and down. Edging more towards down now. Sorry this is going to be a long update.

We made it to Dutch Wonderland, but not without a lot of determination and perserverance. Our friends' daughter Jessica got sick on Friday afternoon, Neil got it on Friday night and was unable to drive with us on Saturday. Instead of taking one car as planned, we ended up with 3! The gas prices were through the roof too. We also ended up leaving later than expected on Saturday as Neil tried to find out what happend with his dad. His father was taken by ambulance on Friday night to Montifiore Hospital. Neil probably would have gone there instead of the trip, but with his very contagious virus it wasn't a good idea.

Still, we had a nice dinner with our friends on Saturday and the boys had a ball in the hotel swimming pool. Kendall is truly a fearless child! It was hard to keep him from diving right into the water (no, he doesn't know how to swim yet!). Zachary was more cautious, but we all had a great time.



Here are the kids at the hotel before their swim. This was our boy's first hotel!

Neil was feeling better Saturday night, so he left to come join us at around 2:00 a.m. Sunday Morning. What should have been an easy 4 hour drive, turned into over six hours, as he got his directions wrong and ended about an hour north of us. Still, we all had a nice breakfast together, then went to the park.

Dutch Wonderland is unbelievable! Probably one of the best amusement parks I've ever seen. There are so many great rides and most of them are as fun for us adults as for the kids. They also have a water sprinkler park where the kids can run through all sorts of great sprinklers and slides and pull levers and turn wheels to make the water come out. Lots of fun (and gave us a chance to sit!). The boys liked the log flume the best, and we had to agree. They also enjoyed a fantastic diving show with this Frog Prince story. We got soaked and had a great time.

Unfortunately, our friend Jim started to feel bad almost as soon as we got into the park. It got worse pretty quickly, and he ended up having to leave. We took the hotel rooms for another day. It was a good choice.

Around this time I finally got to meet with some people from my ACOR online support list. Connie Strayer and her amazing son Jared who has also been battling NB. She was there also with her mom and her daughter Kirsten. Just a great family and we were happy to finally meet them. However, it was a hectic time for us and we were still deciding what to do, so they went on around the park. We will have to try it again sometime! We love the area so we will be back. Next time we will plan better I promise.

Anyway, the rest of us had a great time in the park. We will have to make it up to Jim. There was one great ride at the end called the pipeline. It is a water slide in a tunnel that you go down on little rafts. It was very long and twisty. One of them you could see where you were going, the other tunnel was pitch black...very creepy. Boy was that fun! The kids were so brave! They are still talking about it. We had an easy ride home on Labor day, and a nice evening.

Yesterday Neil went up to see his dad and realized he was worse than we thought. He had multiple problems, but it was the heart that was causing him the most trouble in the end. We found that he passed away early this morning. We are on our way up there now to make arrangements. Reggie was a fantastic dad and wonderful grandfather. He will be greatly missed by a lot of people. You can see a picture of him on the photo page with the boys. It was taken a few months ago, but I have some more recent ones I'll upload at some point. We just saw him and went out to lunch a couple of weeks ago, and although he was moving a bit slower, he seemed in good spirits. The kids just loved visiting him. Poor Neil is just so devastated. However, Reggie managed to live life on his own terms, independantly in his own appartment right up until the end. He never wanted to be in a nursing home or to be cared for by family. He got to go out peacefully with little fuss, as he wished. God obviously loved him to grant him those wishes.

Thank you to all who care to read and check up on Kendall. I'll have some new pictures soon. I'll be busy over the next couple of days so don't worry if you don't hear from me.

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Wednesday, August 31, 2005 8:12 AM CDT

Well, the rollercoaster continues!

We had a great weekend at my brother's. Happy birthday Nick! The boys had a great time playing with their cousins and Kendall got his first swim in a pool in over a year!



That's Kendall with his Uncle Nick and Zachary with his cousin Andrew. Here is a great picture of Kendall after the pool:




Unfortunately, when we got home on Sunday night, Zachary started throwing up. This was probably a virus they caught before going. I thought Zach was a bit off on Saturday. Kendall waited until Zach was finished with his illness to get sick (I've been trying to train them to get it at the same time, to no avail!). He started last night. We have to go back to clinic anyway today to have them draw more blood for the stem cell collection, so I'll have him checked out. It seems a mild virus though. Poor baby. It came on so fast. He had a great time playing at Ikea (sorry for all those kids exposed yesterday!!!!) while I looked at furniture. Then we took my mom to the Emergency Room. Yes, my mom. She broke a rib tripping over the wire to her electric blanket. Yes, in the summer. What can I say, it is all my boys' fault because they keep pulling the blanket off the bed. We feel just awful about the whole thing. But Kendall seemed fine in the hospital, ate two chicken strips, several french fries and half a bottle of Nestle's quick. Running and playing. Then he threw up in the car on the way home. I was hoping it was just a little too much food, but he is still sick this morning so that isn't the case. He has the bug.

We are off to clinic now. We plan a trip to Dutch Wonderland with our friends this weekend. With any luck, everyone will be feeling well by then.

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Wednesday, August 24, 2005 7:58 PM CDT

It's official. I have the bravest kid ever! What a trooper. Kendall had his first blood draw without the broviac. I had no choice but to bring Zachary with me, so I was a little flustered, but not Kendall! We got there early and ate lunch in the "captainteria" (cafeteria). Then got to the appointment early. Nurse Lori didn't know his line was out, so she had set up for a broviac access. She didn't miss a beat though, and got the butterfly catheter out and other materials for a blood draw from the arm. Luckily, Kendall was blessed with good veins like mine. His blood pressure was up a bit too, which helps! Kendall sat on the table with his arm out and head cuddled into my chest. I was only just supporting his arm, not really holding it. No need, he kept still on his own! I should mention we also had the help of "Alfredo" the frog puppet for distraction. I had Alfredo on my other hand and he was hugging Kendall too. Kendall did not much react to the band on the arm (he noted that it was blue). He counted to three with nurse Lori, who deftly slipped the butterfly in to only the mildest cries. "Alfredo" told him to take a deep breath and keep still so it wouldn't hurt, and he did! He watched Lori put the different vials on the vacutaner (they drew 4 large vials), and his only request was that I make "Alfredo" keep talking. Yes, he actually held a fairly normal conversation with me and the frog while the nurse drew the blood. He was only mildly stressed. He did cry a bit when she took it out and put the gauze on, but only for a few seconds. As soon as he realized he had done it and earn his requested reward (a large sprinkle cookie and some silly string for later), he smiled bravely and said "See, I'm a big boy. I don't need tubies!". Zachary did a stellar job of staying quietly out of the way and playing. He got a cookie too. I must say I was impressed with both my boys!

I'd been preparing Kendall for this for quite a while. We talked about how great it would be without tubies as we could do lots more stuff, except for the once or twice a month when they need to get blood. When I gave blood, I showed him the bandaid and puncture mark in my arm, so he saw that I did it that way too. I talked about the procedure and stressed how it hurts much less when you keep still, and how it was only for a few minutes. I really think "Alfredo" helped too. Usually I bring "Mr. Cuddle Frog" (aka "Goldberg") as a comfort toy. But I left him home accidentally, and spied the frog puppet in the car from a previous trip. It was even better. The puppet really distracted him.

For some reason, I didn't think to use the EMLA cream to numb the skin beforehand. (DUH!) Lori told me to put it on a half hour before the clinic appointments so it would be ready by the time they were ready to draw. Then he won't feel it at all. All in all, I'm ver proud of Kendall, and I think he was very proud of himself too. Even Zachary was impressed. When we found there was only one of the coveted sprinkle cookies left in the cafeteria, Zach (who grabbed it first) was the one who offered to share it with Kendall. He said "You deserve a treat Kendall."

These kids are just so amazing sometimes.

I'm off to go vacuum up the remnants of the Silly String from my living room.

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Sunday, August 21, 2005 10:51 AM CDT

WE ARE TUBIE FREE! Finally no more infections or concerns about having Kendall's line pulled out by accident. The removal went very smoothly. The lovely people at StonyBrook's PICU and Child Life departments really came through for us. I had no one to watch Zachary this time, so I had to bring him with me. The PICU staff let him stay in the room with me and Kendall until they had Kendall sedated. They were sooooo cute lying in the bed together! (we took Zachary out of bed and had him sit on a rocking chair during the actual sedation so he wouldn't get scared). They didn't even make me feel bad about bringing him! The child life staff graciously watched Zachary in the play room until Kendall was properly awake, as the waking stages can be a bit scary at first. Kendall had his bandage off and was able to be bathed the next day! He is now restriction free and can swim and bathe at will, although they caution against public pools because of his general immune compromised state.

The boys had a great time at their first circus last week. Cole Bros. was great! They met Spiderman, although we didn't have a pictre taken ($10 for a poloroid!), but they did shake his hand. They were scared of the "bad clowns" that were fighting (Spiderman to the rescue!), but they loved the trapeeze and balancing acts and the chineese acrobats. I got to see a great lion dance, although the boys found it a bit scary. They rode the ponies too! Even Kendall sat on by himself without me holding him! So brave.

I may have updated about that last week, if so I apologize. I only have a few minutes as we are on our way to the Aquarium with our friends, so I don't have time to read my prior updates.

Kendall's stem cell collection is scheduled for 9/20/05. They are going to use Neulasta to stimulate production rather than Neupogen, as it is less shots. So nice of them! On Wednesday he gets his first blood draw without the tubies. I've been mentally preparing him for the trauma as best I can, but say an extra prayer that it goes smoothly.

Love to everyone and thanks for you all. I'll be donating blood at my hospital this week. There is a great shortage in New York. Get those arms out and start giving until it hurts. If everyone who reads this gives a pint, we can make a huge difference. Also, NB Hope bracelets are available. Money goes directly to NB research! Follow the link above. We also have lovely car magnets. If anyone wants one, I'll be putting in a new order soon. They are $5.00 each. Let me know. Money also goes to NB reasearch.

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Sunday, August 14, 2005 8:34 PM CDT

Sorry still no new pictures, I just can't seem to find the time to upload them!

Kendall was admitted to the hospital after my last update. We stayed a week! There was a massive staph infection. Staph grew on the culture within a few hours. He's been on IV Vancomycin ever since. However, the saga of Kendall's line is still not over. As we were being discharged on Monday some redness and oozing around the site of insertion for the broviac was noted. We had been using something called a Biopatch (an antibiotic laced pad) under the dressing to help keep the site disinfected, but it was decided to change the dressing with just a clear Opsite (like a clear bandaid) and no more Biopatch. All week it's been redish and a little oozy, but it was improving little by little. I figured the redness was a reaction to the previous Biopatch. On Friday it looked much improved. Then today, it was oozing greenish pus, red and more open. I called the oncologists. Kendall will be seen tomorrow afternoon in clinic and his Broviac will likely be removed, probably right away. The problem is he still needs the Vanco for several more days, so I guess they will decide what to do about that when we get there. I was truly hoping he could keep the line long enough to finish the vanco so we would not have to deal with another IV line. However, it is dangerous to keep an infected line so we will have it removed before it gets any worse.

None of this phases Kendall one bit. He's active and eating well. He was starting to rub the line a little bit today, probably because it is starting to become infected again. His skin is holding up fairly well considering he is on the second week of accutane. This is his last cycle by the way! We are excited to finish the protocol and work on just monitoring and frequent scans. His immune system seem to be recoving well and he has responded fairly well to the infections (his blood counts shot up as expected, and came down as expected as the infection cleared.

We go approval from the insurance to collect more stem cells. We are extremely happy about this and will update later with collection information. Obviously he will not have a line in by then, but one would have to be put in anyway as the broviac is not large enough for a pheresis collection. We will likely schedule this to coincide with the next set of scans.

So tomorrow I go to clinic at some point and hopefully we will come out without the line, or at least with a removal date. Keep Kendall in your prayers that the infection does not spread or get worse. So far it seems to be confined to the skin around his site.

We hope to get all this behind us so we can get on with trying to enjoy what little summer we have left!

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Tuesday, August 2, 2005 2:28 AM CDT

I was hoping to have some new pictures before updating, but I haven't had time to download them. My bad week improved only slightly. Zachary's doctor's visit was OK and he was negative for Strep. The doctor ruled it a viral sore throat by the way it looked, and gave us some Motrin. He was much improved after that and we made our lunch with Aunt Gladys. She was so thrilled to be out of the nursing home for the day, and we had a nice lunch at Red Lobster. I'll post the pictures soon! Sunday was spent getting a new playhouse for the boys! We bought one used and it is in great shape. The boys were thrilled and they love it.

Monday found us back at the doctor's office again as now Kendall had spiked a fever. It was very thoughtful of him to wait until a clinic day to have the fever, and I happend to be scheduled to work the evening shift that night, so I didn't even lose much time from work. His counts were good and his strep culture was also negative. They ruled it viral and let us go in time for me to get to work late at 6:00 p.m. I worked until Midnight, then was up to work again at 8:00a.m. (I stayed at my mom's with the boys). Kendall blew this virus off like it was nothing (it had Zachary tired and off for about 5 days!) an he was fine for his bone marrow aspiration/biopsy on Thursday. The procedure was uneventful, and Kendall was thrilled to see all the nurses and staff of 11 south and the PICU again! We will have the results in a week or so.

Unfortunately, he was also brewing a bit of an infection at the broviac site. His skin has been red and dry around the dressing, and I've been having a hard time keeping him from itching it. He's pulled the dressing off a number of times, and there was some swelling and redness at the entrance area. I've been changing it daily and using bacitracin, but the swelling looked a little worse this evening. I planned on calling the doctors in the morning to see if they wanted a look at it, but as luck would have it, he spiked a fever at 3:00a.m., so we will be heading to clinic first thing in the morning. The fever is coming down with Tylenol, so they decided he would be OK to wait until then... otherwise it is the dreaded ER visit. I'm going to check him again before I go back to sleep, but he is resting comfortably and his temperature had dropped a bit at the half-hour mark. I'll update again soon. Hopefully they will treat us as outpatient, especially as he is not getting any treatment right now and is probably not neutropenic. I'm just not ready to go back in the hospital again!

I'll update as soon as I can, hopefully with new pictures!

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Saturday, July 23, 2005 7:02 AM CDT

I cannot believe it's been so long since I've updated! I appologize. It's been pretty busy here lately, and very hectic. However, Kendall is doing well and the boys are having a great summer so far.

We had a terrific Fourth of July. The boys went to see their very first fireworks show at Bald Hill. Here is Kendall enjoying the fireworks

As you can see, he looks great and is feeling well too. We've been getting the backyard ready for company, and now have a lovely inflatable bouncer and a patio set. Just a bit more cleaning up and some minor yard work and we should be ready for our first barbecue in years!

I've had a rough week. Flat tire on Monday. Pulled over for no turn on red on Tuesday. Root canal on Wednesday. Tire flat again on Wednesday. Had it replaced on Thursday which made me late for everything! Then Zachary gets sick on Thursday night. Up with fever and vomiting. So my day off yesterday was not much fun:( His fever gradually improved and we went outside late in the day for a little bit. This morning, no fever, and he is happier, but he complains of sore throat. I looked. It's red. We will be seeing the doctor ASAP of course. This is going to make our plans to take Neil's aunt out for her birthday a bit difficult. We already arranged for Able Ride to pick her up at the nursing home, and it is difficult to change things. Still don't know what I'm going to do about all that.

Strangely, Kendall seems fine. No fever, no sore throat, no vomiting. However, I'll probably have him checked too. Of course, he could get it at any time. ARGH!

On the medical front, we still have Kendall's broviac in. We were planing on having it removed, but after much discussion, we decided to try for another stem cell collection first. This way they'd have clean cells in reserve if he ever needed them. If he does relapse, many of the treatments that are now available require stem cells. I've met a few others who are in a bad position of not having cells in reserve, and that was what prompted the decision. We are going for bone marrow biposy this Thursday, and if it is clean (takes about 7-10 days) they will hopefully plan for collection. The big question: Will the insurance pay???!!! Let's pray they have a heart.

I'll get some new pics up later this week.

I hope everyone is enjoying their summer!

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Sunday, June 19, 2005 9:39 AM CDT

HAPPY FATHER'S DAY to all the dads out there!

The boys have had a great couple of weeks. Lots of fun and excitement. On Thursday, June 9th, they had their moving up ceremony at the Morgan Center. It was so cute. The kids all dressed in caps and gowns and sang songs. Well, my kids didn't actually sing. Zachary threw himself on the floor and began sucking his thumb, and Kendall pounced on top of him. I ended up just holding them on my lap. I guess it was the huge group of people and news cameras that upset them. Yes, it was on the Channel 7 news, although you can't see either of my children as they were on the floor at the time. They had a professional photographer take pictures, which I'm told we will get copies of. I'll post them when I get them. For now, he's a picture of the boys with Neil, and their friend Molly (they argue over whose "girlfriend" she is...they both adore her.)



On Sunday June 12th, we went to a carnival for kids with cancer and their families. They had an absolute blast! There were boncy huts and a scary giant slide (Molly's brother took them down at first, then they did it themselves!). There was a huge toy hut and everyone came home with lots of toys. There were games and the Islanders were there to show the kids how to make a slapshot. The Dragons (arena football) were also there to do some target shooting with the football, by my boys were a little too small for that. They had lots of food and a train to shuttle us between the car and the fair. It was a fantastic day and the kids are still talking about it!

We're all adjusting to life without Mimi. It wasn't unexpected, but it is still hard sometimes to think of her not being there anymore. It is particularly difficult for my mom, so keep her in your prayers.

Good news is, Kendall is still NED! His scans came up clean and he is feeling great. He is doing well with the Accutane. He takes his pills with no problem and it only causes him some minor skin discomfort... and some minor personality changes. Not too bad considering all the possible side effects though! They do want to keep an eye on some possible radiation damage to his growth plate in the right hip. They tell me there is a good chance this will not cause any growth problems, but they want to start measring and checking now so that proper therapy and compensation can be made as early as possible. We go to Clinic on Wednesday, and his scans will be reviewed in Team Meeting on Tuesday, so I will discuss removing his line again at that time. Hopefully they will schedule us for a date!

I hope all is well with everyone who continues to check on us. Your kind thougths and prayers are all so appreciated, more than I can express.

Love to all,

Aimee

(Happy Father's Day daddy. We miss you!)

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Friday, June 10, 2005 11:53 PM CDT

What a busy week! My grandmother's funeral was absolutely beautiful and perfect. I know she would have been pleased. We did not bring the boys to the service at the funeral home, but I had Neil meet the procession at Calverton (in a remarkable feat of driving and coordination, he ended up pulling in right behind our group!). The boys were very impressed by the military service with the flag folding and presentation. We visited Helen's grave (Neil's mom) while were were there. It was hard for Neil, because even after 8 years he still misses her. We both wish she would have had the chance to get to know our boys. She'd have been so thrilled.

My grandmother was further honored by Newsday, who chose to write a full obituary on her. They had called after my mom sent in the notice because there are not too many WAC's left on long island, so they wanted to do a full write up. I thought it was very nice, and I copy it here (along with the photo they chose...which is actually part of her wedding picture... she was married while in the service).

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Rosalee Cordiano, 81, WAC member

BY LAUREN TERRAZZANO
STAFF WRITER

June 6, 2005
Rosalee Cordiano, one of the few women who serviced B-17 and B-24 bombers during World War II, died Wednesday of complications from pulmonary disease. She was 81 and lived in East Meadow.

Cordiano served in the Women's Army Corps and worked in New Mexico and Wisconsin fueling, greasing and conducting preflight checks on the aircraft that carried bombs ranging from 4,000 to 8,000 pounds over the Pacific and Europe.

"She was extremely patriotic. She was very proud of her service in the military," said her son, Dennis Musheno, of Atlanta, adding that is father, Charles, was a bomber pilot during the war.

Her first marriage ended in divorce, and Cordiano lived in Toms River, N.J., for much of her life with her second husband, Hugo Cordiano, to whom she was married for 38 years.

She was involved in the American Legion post in Astoria, and loved to play golf.

In addition to being handy mechanically, she also was a fabulous cook, her son said, noting her specialty was Italian food. "She could cook for 50 people with her eyes closed," her son said.

Services will be at 9:30 a.m. today at Thomas F. Dalton Funeral Home in Levittown. Burial will be at the Calverton National Cemetery.

In addition to her son and husband, she is survived by a daughter, Donna Weess, of East Meadow; son Jeff Musheno of Alexandria, N.H.; 27 grandchildren; and 11 great-grandchildren.

In lieu of flowers, the family asks that donations be made to a program for preschool-aged children undergoing cancer treatment, The Morgan Center, P.O. Box 333, Brightwaters, NY, 11718.

************************

I also have been working on the picture I would have chosen for the article. It was in pretty bad shape though, so I guess they couldn't use it. I scaned it in and I'm working on restoring it. It was an old wallet photo with a sepia cast and painted in lip and cheek color. I took out a lot of the scraches and holes and fixed the bleed on the color.


I'll write about the boys graduation which was held on Thursday later this weekend. Right now it is late and I need some sleep. The boys are both fine. Kendall is scheduled for scans starting Monday morning bright and early! A few extra prayers for good scans are definitely in order!

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Friday, June 3, 2005

I am posting my grandmother's obituary below to have a more permanent record of it and for anyone who maybe didn't get a chance to see it. She was a remarkable woman who lead a very full life.


CORDIANO-Rosalee of East Meadow (formerly of Toms River, NJ) on June 1, 2005. (Vet. WWII Army Airforce; Former Adj. Genl. C.W. McKenna American Legion Post Astoria, NY). Beloved wife of Hugo. Loving mother of Donna Weess (Fritz), Jeff Musheno (Elizabeth) and Dennis Musheno (Edwinna). Devoted sister of Samuel and Manuel Salyers. Cherished grandmother of twenty-seven. Treasured great grandmother of eleven. Friends may call Sunday 2-5 and 7-9:30PM at the Thomas F. Dalton Funeral Homes, Levittown Chapel, 2786 Hempstead Tpke. (2 blocks east of Wantagh Pkwy). Funeral Service Monday 9:30AM, Rev. Dr. Theodore S. Grant Officiating. Interment Calverton National Cemetery. In lieu of flowers, donations to The Morgan Center, PO Box 333, Brightwaters, NY, 11718, in her memory would be appreciated.





Wednesday, June 1, 2005

I'm saddened to say that my grandmother "Mimi" passed away from lung cancer this evening. She's been battling this disease almost as long as Kendall has, but it has been much harder on her. She was a real fighter, who no one believed would make it as long as she did. She truly loved children, all children, but especially her grandchildren and great-grandchildren. She called my boys her "angel babies". They just adored her.

I decided to take them to the hospital to say goodbye to her today. I know they are very young, but they have spent a lot of time at hospitals and around sick people (mainly children) so I felt it wouldn't distress them too much. They've seen Mimi declining over the last few months, and were used to her long deep sleeps, oxygen equipment and breathing appratus. I've been gently preparing them the last few weeks, mostly by separating Mimi's illness from Kendall's and by bringing up the concept of God and Heaven.

When I saw Mimi yesterday, she woke up and talked to me and even ate a little lunch. I know the doctors told my mom to have people come because it wouldn't be long, but I didn't realize how much she had deteriorated in a day. Mom said Mimi talked to her a bit earlier in the day, and the nurses told her it would be OK and may even do Mimi some good to have the kids come. But when we got there, she was unresponsive. Other than breating heavier than usual and having an oxygen mask on, I don't think she looked all that bad, just sleeping. The boys weren't too upset that she wouldn't wake up; they just patted her shoulders and kissed her near her feet (over the blankets) and gave her their Prayer Blankets. These were small blankets with angels on them that were given to us by Pop's church, St. Rafael's. They pray over the blankets and they are very comforting. My grandmother wasn't a regular church goer, but towards the end she clearly had a religious/spiritual awakening. She loved those prayer blankets and was so thrilled when Shirley first brought them. I do think she was aware they were there, as her breathing changed and she seemed to try to move her head. But she could not talk to them or open her eyes. The boys said they loved her then we went and got some ice cream at the cafeteria. They were thrilled to see many of my mom's and my coworkers, and they got lots of attention.

They asked to go to the park, so I took them to Eisenhower. I decided to take them to the Veteran's Memorial first. They rode their tricycles up the path. I haven't taken them there in a long time. I thought the stones had a "cemetary-like" look to them, and figured it would help them feel familiar in case we bring them to the cemetary. We may not have a choice, as I don't have anyone to watch them. My other option is to go without Neil. I'll decide later. I think they'd be OK with a short service and the cemetary ceremony. It may be good for them. I'll try to call the psychologist in the morning to see what she thinks. In any case, we went to the memorial and I showed them Grandpa Frank's name on the stones. They seemed impressed and liked the statues of soldiers and eagles. My dad died 2 years ago this week. The boys don't remember him of course, but they see his picture and I tell them about him. I've used him as an example to explain about Heaven to them. I don't think they really understand yet, but that's OK, most of us adults don't really understand it either. I miss him so much. His passing was very sudden and we didn't even get a chance to say goodbye. I guess that was why I wanted my kids to say goodbye to Mimi. When I want to be close to him I go to the Memorial at the park. I'd rather think of him there, near the driving range and duck pond, than at the cemetary.

Mimi loved being a grandmother (if not being called a grandmother!) and great grandmother. She loved taking us places and buying us things. This was what made her most happy. She will be greatly missed by many. I still can't believe she is really gone. Rest in peace now Mimi.

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Monday, May 30, 2005 10:57 AM CDT

It's been a while since we updated, and the boys have been having a blast. After their party weekend around their birthday, we had some quiet days, but mostly we've been preparing their new backyard. We finally got that hole where the pool was filled in this week, and on Friday, Neil and I laid the sod. Yes that's right, we did it with just ourselves. About 8 hours (six the first night, two the second) of backbreaking work later, we had a beautiful backyard. I'll get pic's up shortly. We still have a lot to do back there, like getting rid of all the brush and junk, and putting the gate back up, but most of it is done and we feel very proud of our accomplishment. If we knew how hard it would be, we probably would have hired someone! Much thanks is due to the wonderful people at DeLea Sod for helping to supply the sod at a very resonable price. If we seeded this late in the year, we would have had to wait until late June before we had a yard the kids could play in. This way we only have a couple of weeks.

The boys have had minor colds (all of us actually), but other than not going to school this has not slowed them much. We went to check out the trains yesterday and had a great time. I'll host a picnic there on their next public run day (about 3-4 weeks) and will get the info out to everyone. Only thing is, I'll have to bring sandwiches or something (no barbecues). We plan on going to the Brookhaven fair today, and I know they will have a blast. They went to a carnival in Levittown with Nonni and Poppi on Friday while Neil and I broke our backs laying sod, and Mimi came for a little bit too! The boys are making lots of friends at the park, and just love this nice weather. I hope it holds up!

Happy Memorial Day to all. We remember fondly all those brave souls who died to protect our freedom and this wonderful country of ours. We also remember and pray for the families who have lost their loved ones at war. We salute all our brave soldiers, and pray that they return home safe and sound.

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Saturday, May 14, 2005 10:11 PM CDT

Last Saturday (May 7th) was a busy, but nice day for the boys. They started out at Connor's first birthday party, and had an absolute blast. We practically had to drag them away. They loved playing with the other children, especially a little girl named Emily and her brother James. Zachary became very attached to Emily and still asks about her a week later! I'll have to talk to Tom and Michele and see if we can get together with her family for a playdate. The boys got presents there too... new trucks. One of them plays "We Will Rock You" by Queen, and the boys are now going around singing their new favorite song! (It is very cute!) As if 4 hours of partying with no nap wasn't good enough, we went to Nonni and Poppi's "summer house" for a Mother's day, Nonni's Birthday, Boy's birthday party. We had another great time and more good food (and cake). The boys were on a real sugar high already. They got a lot of nice gifts, including some great books and gift certificates for new shoes (we picked them out on Mother's Day). Then Poppi stole the show by bringing out their new "big boy" bicycles! These were gorgeous red mountain bikes with training wheels. Kendall can almost ride it, give him another inch I think. Zach was riding all around the basement and we can't wait to ride them in the park. Thanks Nonni and Poppi! It was a great day.

Besides my beautiful hand-made bracelets from the boys (thank's to the wonderful people at the Morgan Center who had the kids make these really nice gifts for us as a craft!), I also got two new watches (Thanks Neil!) from them. They are gorgeous and just the kind I like. We went to the park for a bit on Mother's day, but it was pretty windy, so we went home and cleaned top to bottom. I ended up with a few surprise days off this week, so I did some more cleaning and actually cooked a few meals! I even got some shoping done and managed to get the lawn mower to the repair shop by myself. With any luck, we will be able to cut the grass before it gets taller than our kids! We are still awaiting the company to repair our backyard (it needs to be filled in with dirt and leveled).

Overall though, we are feeling pretty good and Kendall feels great. He started his third round of Accutane yesterday and is already starting to redden a bit. We spent most of today outside, so I'm sure it will be pretty bad tomorrow! There was a great little fair at a local park, and the boys had a great time. Kendall is almost able to keep up with Zachary and the other kids now. Zachary is such a sociable kid. He goes up to just about any other kid and asks their name. Then he introduces himself. Kendall is a bit shy and often wont speak if other kids come to talk to him or play with him. But he will go by Zachary and Zach introduces him to the other kids! Then they all play together. It's so nice to watch them. Last year arround this time, I was at a park and Zachary was climbing and screaming with the other kids, while Kendall clung to me and looked on sadly. He wouldn't run and play and seemed so very tired. Now, I can't turn that energizer bunny off sometimes! We are truly blessed.

I'll get those thank you cards out for the boys' gifts, but if they are a bit delayed, just know that we are so very grateful for everything.

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Friday, May 6, 2005 10:54 PM CDT

HAPPY BIRTHDAY KENDALL AND ZACHARY!

The boys had a great time so far celebrating this very special birthday (actually, their birthday is tomorrow, but why wait until the last minute?).

The clinic at Stonybrook had a beautiful little cake with wooden train whistles for the boys on Wednesday. . Then, Today they had their party at the Morgan Center. The children were thrilled to have a puppet show with Mr. Mouse (www.katiespuppets.com). Katie puts on a wonderfully entertaining show and they boys just loved it. They were so excited. Then they all made sock puppets and foam puppets. They had pizza and a nice cake complements of Nonni and Poppi, and great-grandmother Mimi actually was able to come too! I know it was a struggle for her and we are so thrilled she was able to come and enjoy the day with them.

Tomorrow we celebrate the birthday of a terrific one-year-old, Connor. Later, we will be celebrating Mother's Day and my mom's birthday too. We have a quiet Mother's day planned, with just the four of us at the park (or some indoor activity if the weather doens't hold out).

Happy Mother's day to to all the Mommys!

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Friday, April 29, 2005 5:43 AM CDT

Well, Kendall finished another round of Accutane without problems. His face got pretty red and flaky, but there isn't much you can do about that. Otherwise, the side effects have been minimal so far.

We've had a busy week. We went out with some friends on Saturday to Sports Plus and the kids had a blast as usual (hopefully there will be no illness). Neil managed to lose his wallet, but we still bought my new camera, just in time too. On Sunday I took the boys to Brenner's Farm. This is no prettied-uped petting zoo. This is a real working farm with all sorts of eqipment and muck and dirt all over! They have a huge heard of sheep and they have goats, pigs, geese, chickens, a cow and a pony. They do a baby animal program on the weekend, and the boys got to walk around the buildings feeding the animals, they milked a goat (yes, I said milked), they fed the chickens, then they got to hold a bunch of different baby animals. Zachary fell in love with the jack russel puppies of course (hard not to!), and they were both fascinated by the baby goose's webbed feet. They also held chicks and bunnies. A great time all in all. The place just needs a snack bar or vender and it would be perfect!

They had no school this week, so they were off to the Children's Museum on Monday, and the Jones Beach Nature Preserve on Tuesday. They came back with all sorts of stories about snakes and spiders and catepillers. Sounds like fun for Nonni! Yesterday, after an aborted shopping trip, I took the boys to the carnival at the mall. They absolutely loved it and I got some great pictures. Next time I'll bring Neil though!

We'll be in clinic next week for end of cycle blood tests, but we expect them to be just fine. I'm planning a bithday celebration for them and will have the details shortly. I will likely email them them send invite's later.

You will notice a lovely new page design for Kendall. Much thanks needs to go to Colleen, an online friend who graciously designed it for us and showed me how to add pictures. This in the midst of her own battle with Neuroblastoma for her daughter Kaitlyn. Drop in and pay them a visit and send Kaitlyn a big cyber bearhug from us at www3.caringbridge.org/ne/kaitlyn.

Thank you everyone who stops by. We love you all.

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Monday, April 18, 2005 9:59 PM CDT

Sorry it's been so long since an update, but things have been going well overall and we've been very busy. I don't think we spent more than 3 waking hours in the house all weekend!

For those who don't know, Neil's Jeep finally got to the point where the cost to fix it would exceed the value of the vehicle. There was no choice but a new car. Well... a new "used" car to be exact. Actually, it's for Neil, so it's a new "used" truck. On the bright side, it is a 6 cylinder, which is actually somewhat better on gas than the Jeep. This is not saying much. I do like it though. It is a beautiful, red, 4 door Chevy S10 with a hard cover on the pickup. The boys love it too. We picked it up on Saturday, and took it to the Aquarium. The boys had a ball of course. They just love it there (me too!). There was a reptile exhibit there, and the boys got to touch a baby crocodile and a corn snake. They were so excited! We had a nice visit with Grandpa Reggie on Sunday, followed by another nice visit to Tom and Michele's. The boys were so happy to play with their almost-one-year-old Connor, and their boxer Layla. She's very active, but a real sweetie. The boys just love playing with her. She is very good natured too.

Today they went to school and I to work. Back to normal again. Kendall takes his pills now with no help. I just hand them to him and he puts them in his mouth and swallows, then drinks some milk or juice. Now my mom can (and did) give them to him if necessary. It seems like the side effects are starting a little earlier this time. His cheeks are already a bit red, and he was complaining a bit of knee pain. Still, he was running circles around Zach and dancing all around the house when I got off work. All in all he feels pretty good and is looking great too. His hair is still very soft and fuzzy, and reminds me of when he was a little baby and it was first coming in. It is like velvet. It's starting to get longer and thicker though. We go to clinic on Wednesday, and to hand clinic Thursday to have his broken finger re-evaluated (Zach dropped a rock on him last week and he has a questionable growth-plate fracture at the tip of the finger, it seems better now though.) I hope to find out when they will be doing his next scans, and when they plan on taking out his Broviac line.

I'll try to update again at the end of the week, but it's been so busy lately. Also, I hope to have a new camera shortly, so there should be new pictures soon.

Thanks for your continued support and prayers.

Love, Aimee

(Happy Birthday Dad. We miss you.)

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Sunday, April 10, 2005 0:23 AM CDT

I can't believe how time has flown. It seems like there are just never enough hours in the day. The boys are doing great and having a ball. The weather has finally been nicer and we are getting out more and having a great time.

My boys apparently missed the ER at Stonybrook just a bit too much, so we were back there again this evening. Zachary accidentaly threw a rock on Kendall's hand (you didn't think it was actually Zachary with the problem this time, did you?). Poor Kendall. His finger was all bruised and swollen. No breaks seen, but we will be following up with a hand specialist next week.

I hope everyone is enjoying the beautiful weather today. Thank you all so much for checking in on us.

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Thursday, March 31, 2005 10:09 PM CST

It's been a little while since we updated. The boys have had a great week. The weather is finally getting nicer and they are getting out more. Kendall's been having a tough time with the pills, but thankfully this is the last day for two weeks! His skin is very sensitive and he has a lot of red dry patches. His lips are swollen and red and peeling. With lots of lotion and ointment on his lips, he is managing OK. He has some grumpy times and sometimes gets a bit tired and achy though.

We are all very saddend by the sudden death of the father of one of the boys' classmates who is battling leukemia. They are a wonderful family going through an unbelievably difficult time. Our hearts and prayers are with them.

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Sunday, March 27, 2005 7:27 AM CST

HAPPY EASTER!!!!

I have been slack about updating, but there isn't much to tell. Kendall started the Accutane, and takes his pills like a champ. He really is good about it. I have to coat them in butter or ice cream and push them towards the back of his mouth (not too far!!!) and they slip right down before I can get the milk or juice in. So far the only side effects, other than occaisional bouts of crankiness, are dry skin and lips. I mean really dry. His face has red flaky patches which we slather with eucerine and aquafore and his lips are all red and chapped. But this seems to bother us more than him. It does hurt to touch it and he does not like the medicine being put on the lips.

Otherwise, he's doing great. We've been getting out and doing a lot of those things we haven't been able to for the last 10 months or so. Zach and Kendall enjoyed two Easter Egg hunts (thanks to the Kiwanas club at NUMC and the Nassau County Mother's of Twins Club). We've been going to friends houses on occasion, and even got out to the Sports Plus place. That seems to have left Zach with a cough though. We will have to watch that. Kendall seems OK, but he will be getting a trip to the doctor tomorrow if it does not improve.

Otherwise, all is well and we have been having a great time. The weather is finally getting nicer and we plan more outdoor trips.

Today we will be going to Church then to my mom's. Hopefully my brother and his wife and kids will be there too. We wish all of you a Happy and blessed Easter. God has been very good to us and our gratefulness knows no bounds.

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Thursday, March 17, 2005 10:43 PM CST

I had one of those days where it seems nothing goes quite right! Kendall's prescription didn't come in until late, so I couldn't get it in time to start today. We will try for tomorrow, but I'm scheduled to work which makes it harder. I was hoping to start on a day when I'm home to watch him carefully.

I was supposed to go bowling with some of the children from the Morgan Center. When I got there, the other mother wasn't there so I figured I'd give her a call. It is not uncommon for there to be last minute issues with these kids, so I wanted to make sure everything was OK. I had added her number to my cell phone right before I left the house. Somehow, I entered it wrong. I know I had it right on the paper at home, but must have typed it in wrong. I called my mom who has the list of numbers. I talked to her about stopping by afterwards so she would watch the kids for a few minutes while I went to the party supply store for tomorrow's Morgan Center party. Naturally, I managed to hang up without getting the phone number. Then I figured, I'll call her later when I get to Mom's. The boys were getting antsy and wanted to start bowling.

So the boys bowled. The place was empty (it being St. Patty's Day and all) except for a small league of senior citizens and a few stray bowelers. This was really great though as it gave me a wonderful opportunity to work with the boys without a lot of distraction. By the 6 frame they were takin turns with little fuss, walking nicely up to the line with the ball (not running), throwing the ball realatively nicely when you consider their young age, and waiting for their turn nicely on the chairs. This was a huge improvement over last time.

We get to my mom's and she isn't there. I knew she had taken my grandmother for her chemo, and expected her back shortly. I was hoping the kids would take their naps so she could have an easy time watching them. No such luck. There were no naps today, unles you want to count the half hour in the car on the way to bowling. Kendall wanted to use the new potty and did!!!.... Zachary still didn't want to. I figured I'd get them changed and try to get them to nap, but my brother came in with his girlfriend. Figures. Within minutes they were all sorts of riled up. Then my mom came home, but told me she had to go back and get my grandmother, shoping had to wait.

It was after 6 by the time I got to the party store, and the lady behind the counter informed me that we'd have to pick up the balloons tomorrow after ten. As the party starts at ten, this was not going to work. Luckily, my mom had a good idea of trying Shop and Stop. So off I went and had 20 balloons blown up (they gave me a great deal, I just bought a package of balloons and the lady inflated them for 25 cents each. This came out to much cheaper than I expected, and I got a Mylar balloon to go with them. I stuffed them in my van and went next door to Walmart for orange and green clothes for the boys and the party goods.

Walmart had no green clothes for the boys. Not one thing even close to there size. They had almost every other color under the sun. I got them two orange shirts and went to find party goods. There was nothing. They had a few mismatched Barbie and Shreck plates but not much else. Nothing saying St. Patty's day. I realize it was late, but I didn't even see a spot where the stuff used to be. I had to pick up our pictures, so I stopped at CVS and hoped they had something. They had no party supplies either. I rushed back to the Party Giant who was closing any minute.

I managed to get the party stuff and went back to my mom's. I was hoping the boys would be asleep (it was 8:00, no naps), but no such luck. They were watching Wiggle's Safari... tired, but cheerful. I put the balloons in mom's car. The first bag I stuffed in the trunk and put the end under a radio to keep them from flying off. I tried to fit the second bag, but it wouldn't. However, I must have dislodged them somewhat, because after I put the second bag in the front seat, I went back to get something to weigh it down and the first bag was gone. It must have flown off in the wind.

So the kids will only get 10 balloons, unless my mom or someone gets some in the morning. I have more balloons, maybe they can get someone to blow them up. Needless to say, in my rushing around, I forgot to call Michelle (I'm sorry!). Still, I spent the day mostly with my boys and we had so much fun! We blew bubbles on the front lawn, bowled and played all day. So I guess I can't really complain:)

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Thursday, March 17, 2005 7:22 AM CST

That's right folks. You read the subject line correctly. Kendall is officially NED..... No Evidence of Disease! His bone marrow biopsy was clean even by the most sensitive tests available.

Unfortunately, because of the aggressive nature of this disease, there is no guarantee that there aren't a few cells lurking about. Therefore he will go on Accutane therapy for the next six months. This is supposed to cause tumor cells to mature and die rather than replicate. He will need three capsules a day, two in the morning and one at night for two weeks at a stretch, then off for two weeks, then back on for two weeks.... for six months. There are a lot of possible side effects, but most of these younger children do fine on it and Kendall has shown the ability to handle tough drugs.

I want to thank everyone for their support and prayers. We couldn't have made it this far without them.

Our St. Baldrick's Day event was a big success with over 100 shavees. Thank you to everyone who supported Neil in this effort. We have been truly blessed with wonderful friends and family. Neil is already looking forward to next year! Finally, a fund raiser I don't have to drag him to. Check out Kendall's website for updated pictures.

I'll be getting back to doing my happy NED dance now.

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Monday, March 14, 2005 11:14 PM CST

Our St. Baldrick's Day event was a BLAST and very successful. Thank you to all who donated and special thanks to those who came to cheer Neil on. Tom D. also gets an extra special thanks as a last minute shavee in an amazing (and loud) show of support! The only complaint of the night was the crowds! The place was absolutely packed. There were over 100 shavee's and when we left (around 10:30) it was still going strong and they had already raised close to $50,000!

I will have the photos of Neil bald posted soon (I hope). I've added some photos of the boys fire house trip for now, so check them out! I'm hoping to put together a slide show soon. There are just too many pictures!!!! I have to wait for the rest to come in.

Neil is already looking forward to next year's St. Baldrick's day. We will start planning early to see if there is a slightly less crowded event nearby....the fire house may have been a good option, and there are other bars that may work out better. This is one of the few fundraisers that I can see him doing year after year!

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Friday, March 11, 2005 2:15 PM CST

Sorry for the delayed update!

The boys had a great time during that blizzard on Tuesday with the East Meadow Fire Department. My mom went there on a whim to see if they would let the boys come and see the trucks some time, and find out about setting up a tour or event for the Morgan Center kids. She ran into the fire commissioner and one of the officers who knew her from in services at the hospital and talked them into letting the boys come on down that afternoon. They let them sit on the trucks and gave them a ride, and even showed them how to shoot the fire hoses! The boys had a blast and were "sworn in" as junion fire cheifs (hats and badges worn proudly). They are planning a tour for the Morgan Center kids for sometime in May when the weather gets better (they can have pizza on the patio!). It's a beautiful new fire house an the firemen couldn't have been nicer. I must send a special thank you. The boys are still talking about it. Hopefully I can get the pictures up on the site this weekend.

Kendall had his splint removed and the orthopedist told us to try to keep a shoe on the foot for a week or so to protect it. Other than actually gluing it on, all suggestions are welcome! He is walking fine and playing and dancing. She told me not to worry... if there is a problem there will be pain and he will stop walking on it. (She obviously doesn't know my stubborn kids!)

We are planning on having Zachary's hair cut short tomorrow (not shaved, just short). Kendall's hair is coming in really well now. Neil is, of course, going to be bald! I'll hopefully get someone to take a picture and upload it for me in lieu of my camera, which still hasn't made its way to the shop for repairs (I've told it to go many times, but it is lazy). We are looking forward to the St. Baldricks day event and are so grateful at all who contributed! Your generosity is wonderful and we will get personal thank you's out shortly (It takes a couple of weeks for the mail-in and phone contributions to be posted, so we will wait for those). It is a very worthy cause and a fun event. Neil is so happy that a lot of his friends have decided to join him and cheer him on. The outpouring of support is truly beautiful. We have been blessed.

The picture on the home page is from the children's holiday party sponsered by A Mother's Kiss (www.amotherskiss.org). This is a wonderful organization started by mothers who lost their children to cancer. They have helped pay some of our bills and expenses that are not covered by insurance (parking fees, prescription co-pays, television and phone rental, etc). They hosted a wonderful party this year and the boys had a blast. They plan on using the above picture on their website and in their new brochures.

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Monday, March 7, 2005 9:14 PM CST

Kendall's scans so far have all been negative! The bone scan showed the recent break, but nothing else. CT showed some mild radiation effects, but no evidence of recurrence. MIBG was negative. We are still waiting for the bone marrow biopsy which was sent out to a lab in California. Assuming that is negative, we will finally be classified as NED!!!! I can't wait. After that, we will begin Acutane sometime next week. I already have the scripts as it can take a while to order.

Kendall's foot seems to be healing well. Hopefully, the orthopedist will take the splint off on Thursday. Kendall's been having a ball lately. We went to visit Grandpa Reggie over the weekend and took them to the Chuck E. Cheese's up there. We won't be going back there again until the boys are big enough to do the slide though. They want to go in those tunnels so much, but they are just too small to be sent up there by themselves. Still, the boys had a blast and we went to the park afterwards so they could slide and swing (yes, even in this frigid weather... cold doesn't bother them any!). Later that night we went to Jim and Kathy's and the boys had a ball playing with Jessica and seeing everyone. They were so exicted I almost didn't get them to sleep at all! (It was after 11 when they went to bed!). We will skip the bowling again this week as he has the orthopedic appointment. It scares me too much to have him bowl with the cast on anyway.

It seems Neil's St. Baldrick's Day event may have been moved. I'll try to get more details later. However, for those wishing to sponsor him the information is as follows: go to www.stbaldricks.org and click on make a donation (see link at bottom of page). Type in Neil Jackson. You will see a great picture of Neil and Kendall before they both lost their hair. Alternatively, you can send a check made out to St. Baldrick's to: St. Baldrick's Processing Center, c/o RT Lawrence, 14111 Freeway Drive, Suite 200, Santa Fe Springs, CA 90670
or phone them at (888) 899-BALD. I will be collecting cash donations as well. For those who will be joining us, I will be sending out another memo tomorrow after I get some of the details.

Thank you all for checking in on Kendall. And thanks to everyone who signs his guestbook. I don't always get back to every one of them, but I do read them all and it really helps to know so many people care about us.

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Monday, February 28, 2005 9:40 PM CST

Kendall did AWESOME for his scans today. He managed the CT without anesthesia but with me holding his hands. This isn't so bad as the actual scan only lasts about 5 minutes or so. We did that at 8:30, and had to go back around 11:30 for the bone scan. We spent the inbetween time in the play room, but Kendall was getting cranky towards 11. He was still without food and the only drink he had was the contrast material in some orange soda with extra sugar. We were figuring we'd have to sedate him for the bone scan. As luck would have it, he fell asleep in my arms while waiting for the courier. He didn't wake on the way down, and I put him on the nuclear scanner bad and he just dozed for the first 15 minutes or so. He woke up just before they got to his feet and we had to convince him to stay still for them to rescan the lower part of him. He was very calm though, but he was getting a bit antsy. We will definitely sedate for the MIBG scan as that lasts at least an hour (it was closer to two hours last time!).

Tomorrow my brave little warrior is scheduled for a bone marrow biopsy in the morning, then we have to get the half cast on his foot replaced. We will get all the results next week.

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Sunday, February 27, 2005 7:16 PM CST

Ok. I'm not going to win parent of the year award for this one, but my kids love me and that's all that counts. I broke down today and threw all caution to the wind, and took the kids to the Long Island Children's Museum. They liked it so much, we joined (it makes sense if you are even going to go two more times). I know, most of you are thinking, how can you take Kendall to that den of germs and filth! Not to mention his poor broken foot with all that walking (yeah, like he would get in the stroller or stay in it willingly). Well, I had to do something in the area with them and I've been just dying to take them for so long and it was too cold for outdoor stuff and I just couldn't take it anymore. I did my best on germ control... the hand wipes never left my hands and I wiped the boys after everything they touched. I even wiped down some of the filthier looking exibits, like the telephones... yes I got some odd looks and a few "tsk tsks", but one must do what they can to protect their kids.

I don't think I've ever seen the boys happier. They were absolutely thrilled and had a ball. It was a bit much for my mom with all the walking though. Next time she'll bring her sneakers.

Like a moron I also agreed to work tonight, but just till 11. They were desparate as someone called in sick. I plan on picking up Kendall at 11pm, hopefully not waking him, then bringing him home to sleep so I can get into the hospital for scans by 7am. I know, that is really too much. I am really too much of a pushover. Sigh. It's just that I won't be working much this week and I really need to put in some hours. Luckily having twins taught me to function on 2-3 hours of sleep at a stretch.

Say a prayer for clean scans and NED status by next week!

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Saturday, February 26, 2005 7:51 PM CST

Kendall and Zach went to Riverhead to see the new Dinosaur Walk Museum. They are now the proud owners of a pair of soft rubber Brachiosaurs (a bargain at only 11.95 each!) named "Brachy" and "Keko". The boys had a great time digging through the sand tables for bones and looking at all the "good tempered" (plant eating) and "bad tempered" (meat eating) dinosaurs. Kendall's foot doesn't seem to bother him much, and he is walking on it well and climbing, no matter how hard I try to stop him. It does still have that half cast though. We went for lunch at a pizzaria and it was a great day all in all. I like the dinosaur museum, but it is expensive (13.95 for adults... kids under 3 are free but other kids are 11.95) for such a small place. We did spend over two hours there though, and the boys enjoyed watching the Walking with Dinosaurs movie, even though it was pretty scary. Zach was a bit nervous, but Kendall just laughed through the whole thing.

Last night while I was getting him ready for his bath, Kendall was getting impatient and saying he wanted to play with Zachary. The wraping and taping needed to bathe him takes a while, and I was distracting him by asking questions. I asked him if he liked playing with Zachary. He said "I love Zachary". I asked who else he loves, and he dutifully said he loves Mommy and Daddy. Just for fun I asked who else? He thought carefully and answered, "I love doctors". I have to say I was surprised. I asked which ones and he said "Dr. Parker and Dr. Akash (Prakash). I said what about Dr. Mueller? (he hasn't seen her in a while) and he said "And Dr. Miller, and the nurses. I love the nurses at the clinic." I thought that was just great that he took to the staff there so well. It made me feel better about my decision to stay and treat him locally. It is always such a tough choice and there were a lot of factors to be weighed. We start scanning on Monday and he has tests most days this week. These are very important because by now he should be NED. Keep us in your prayers for these very important scans.

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Thursday, February 24, 2005 9:46 PM CST

Kendall and Zachary had their first bowling meet today, and had a great time. They LOVE bowling. OK, there were quite a few tears and angry cries, but that was mostly frustration as they had to learn to wait their turn patiently.... a bit of a stretch for a not-yet-three-year-old. They were also a bit tired due to lack of nap (more notably in Zach than Kendall). Kendall, little trouper that he is, had to practically be held back even with his broken foot. He is walking on it now, but it still has the half cast on. I changed the bandage on it today and it looks pretty good. There is no swelling and he can move his toes without too much trouble. It does hurt when you touch the spot over the break even very gently, so I had to go very carefully, but I think it is healing well. We will get a followup with the orthopedist in a week.

Kendall is scheduled for scans on Monday and Thursday, and will be scheduled for a bone marrow aspiration on either Tuesday or Wednesday. The following Monday I should have all the results and, with any luck, he will be starting his oral medication therapy. I hope to be able to send out a nice NED update very soon! (NED = no evidence of disease)

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Tuesday, February 22, 2005 6:25 PM CST

As usual, Kendall is adjusting well to one-footedness. He's getting around a bit by crawling with his foot up in the air and can stand for a few seconds, though I try to discourage it. We had a nice day at the mall. I took the kids on the coin-op rides and carousel. The boys had a lot of fun, and made friends with a little boy named Julien who also liked the spinning "tea cup" on the carousel. The three of them sat in that spinning thing for two LOOOOONNNNGG carousel rides, while I stood just next to it trying not to get sick (I HATE spinning!) The boys just laughed their little heads off and made fun of me. After the second ride they had had enough (ME TOO!). Julien's mother saw me carrying Kendall off and was looking at him with that familiar pitying look that I hate. When we got closer, she said in broken English "The poor foot.... he's so brave boy!" I smiled at her and realized that for the first time in a long while, we got a pity look because of something other than his bald head. That's when I realzied how much hair he has now! It's not full by a long shot, but all his lashes and eyebrows are in, and there is an all-over coating of short dark fuzz. His color and energy levels are great too.

We went to my mom's afterwards and the boys had a nice dinner made by Mimi. Yes, she cooked a full meal with steak, carrots, green beans, brocoli and sweet potatoes. Kendall ate a good deal of his veggies, but wouldn't eat the steak (even very thin sliced.. even though it was pretty tender). He had some swirly bread with butter and taquitos (his favorite). Zach had some bread with butter too, but not much else. Hopefully he will eat later. He's become a real junk food addict and doesn't want anything to do with a healthy meal right now. It is very frustrating. Kendall eats fairly well, but not Zach. It's been a little better since I've been home, but we still have to battle to get healthy food into him.

I'm working at night this week, but should be back onto a more normal schedule next week. I'll have to really sit down with my supervisor and come up with an acceptable schedule. Of course, anything we do has to wait until after his scans, which are probably going to be scheduled either for next week or the one after that.

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Sunday, February 20, 2005 9:51 PM CST

Well, going along with the theme of some nice "normal" toddler problems, Kendall went and broke his foot this morning. He didn't seem to be doing anything all that bad, he was just crawling around the kitchen floor with his minature plastic hockey sticks in his hands.... he likes the sounds they make when he clicks them together or hits them on the floor, table, refridgerator, stove, etc. I went inside to get Zach for breakfast and Neil was putting the food on the table when Kendall apparently stood up on one of the sticks and fell. I didn't think it was all that bad at first, but he was very clingy and wouldn't let me put him down. After some proding I figured out it was his foot that hurt and we were off to the ER.... again.

Kendall was such a great patient and put up with them poking and proding and x-raying his sore foot like a champ. He only whimpered slightly while they put the half mold cast on him. It isn't a bad break, just a buckle fracture of a metatarsal (top of foot bones.. the one coming off the big toe). The doctor showed me the x-ray very magnified so I could see just how small it is. Kendall should be fine with the cast and reduced activiity. I'll talk to the oncologists tomorrow to see if they want anything else at this point for him.... like maybe to check his calcium or phophorous levels. But otherwise he will go to the orthopedist for followup next week.

In true Kendall form, he is milking this injury for all its worth. He is enjoying being carried or wheeled everywhere only by me... apparently daddy can't do it. He has requested several toys, including some lorry cars for his Thomas set, several DVD's, and a new game... all with a pained look in his eyes and very sad voice, along with a "That will make me feel all better" (followed by hopeful but pained smile) just for good measure. I promised him I'd try to get him some of these things tomorrow because we just couldn't get out to the stores today. I have a feeling he will hold me to this! He also was in too much pain to eat dinner at the table, but managed to polish off a small feast sitting on the couch with his foot propped on a pillow and me and Neil bringing his requested treats including bread with cold butter, Cheerios with milk in his sippy bowl, chocolate milk, and two different icy pops. Mind you, he wasn't in all that much pain really. He was on tylenol with codeine and then later on Motrin. He lounged comfortably on the couch until he wanted something, then he'd get a pained look and beg in the sweetest voice you've ever heard. The foot only really hurts when you touch it or he moves. I can just tell he is faking a lot of this ... especially as he laughs maniacally when you tell him he's faking!

Otherwise, he is doing just great and is in good spirits. The colds that kept the boys from their Valentine's day party and first bowling meet are gone from them and have been given to Neil and myself. I'm so glad things are finally getting back to normal around here. Really.

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Tuesday, February 15, 2005 8:51 PM CST

I had a lovely Valentine's day with my three sweethearts! It started off with everyone being on time for Kendall's radiation therapy, which meant we had plenty of time to get Zach and have a nice lunch (ham, cheese, and bread on the side.. they won't eat it in sandwich form)before school. Zach was on his best behavior in class with only one potty break (as usual, he didn't actually go on the potty, but was happy to go through the motions). Kendall was a crying screaming nightmare. He just hasn't been able to get to school with any regularity and it is not familiar and comfortable to him like with Zachary. He is also very attached to me as I spent so much time with him lately. Still, it was starting to get on my nerves. One of the mothers suggested I try sitting on a chair near the door where he could see me until he regains his confidence. This did seem to appease him a bit (thanks Donna!) and he ended the class cheerful and playing.

They napped in the car and I stopped at a pet store on the way home. I wanted to get something for the fish tank in Radiation Therapy as a gift from Kendall for his last day (TOMORROW!!!!) Every day Kendall would feed the fish in Radiation Therapy and the techs and nurses were just so accomodating and gracious about it. It must have been a pain sometimes as it is a very busy area, but they always came and got him the fish food and helped lift the lid so he could feed them. It made Kendall feel important and he even named most of the fish! I went to a different pet store by my house because it looked like they had a large fish selection. However, they were in the midst of renovating their aquarium area and they only actually had a few tanks set up. There was a lot of equipment around so I lead the boys out of there and they enjoyed looking at the lizards, rodents and bunnies. They were enthralled with a hedgehog which they have never seen before (it was really cute... but no, they can't have one!) Then as we got near the birds Kendall stiffed up. Now he can be funny with birds, sometimes he gets scared of them and other times he likes them. This was a scared time and I didn't pick up on his clues. As I caried him near one of the parakeets, he suddenly let out a blood curdling scream as if someone was pulling one of his arms off. I backed up and calmed him down, and was going to leave, but Zach reminded me we forgot to get a toy for Felicia. So we picked out a cat toy and just as I was turning to get on line, Zach asks "What's that mommy?". I looked on the ground and told him it was just a cricket. He said "Oh, a fricket?" Just as I was about to correct him, the little bugger jumped about two feet right at Zach. Well, needless to say he lost it. He barrelled into me like a 37lb rocket almost knocking me and the again screaming and clinging Kendall over. I would have just left but Zach wasn't letting that cat toy (or me) go. So I paid for it and carefully left the store with one child in my arms and the other clinging to my leg and a litany of: "No frickets.... I don't like the fricket... The frickets nothing gonna hurt me" from both boys. The store clerks just looked at me with pity.

We got home an the boys had a great time making a huge mess with playdoh in the kitchen while I cooked dinner. They did help clean up though and Neil got home in time to enjoy chicken cutlets, brocoli rabe (no the boys wouldn't eat it... they had sugar snap peas instead) and cauliflower. We tried playing with the new dance pad, but the boys kept hitting the select and start switches (they enjoyed it though). Then we all watched a video and I read them a couple of stories before bed. They fell asleep with little trouble at around 9. Neil and I had a nice quiet evening, and I got out to the store to pick up a few things.

Now I know you may be saying... that doesn't sound like such a lovely day to me. But from my point of view, it was great. Not wanting to go to school, separation anxiety, messy playdoh and overreaction to scary birds and frickets seem like such normal toddler problems. In between all this I noticed how much better Kendall walks, runs, dances and jumps....how much energy he has... how his hair is growing back, and it made me feel good to deal with such normal everyday problems. All in all, a very nice day. Love to all!

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Thursday, February 10, 2005 10:00 PM CST

Another busy week! I managed to work on Monday, Tuesday and Wednesday afternoons. This was truly an amazing effort. On Tuesday Kendall woke up starving for some reason, and polished off a cup of orange juice, an italian ice cup, a half a bag of goldfish then had two McD's chicken strips and a whole bag of fries in the car on the way to my mom's. Needless to say, all that came up just as we were getting to my mom's house. On the bright side, my mom took over the cleaning of my car and carseat and did a much better job than I would have. Those seats look like brand new! Thanks to Fritz for getting me to work ontime that day.

I was a bit late on Wednesday as they got another late start. Anesthesia told us they had to have him done by 8:30 because they have their weekly meetings. We were there... they showed up at 9:30 and it was after 10 when we were done. This wouldn't have been a problem, except Kendall had his clinic visit at 9:00 am which we were now very late for. They had us there for over an hour so I ended up getting to work about 12:45. Oh well. Kendall got to go to class with Zachary. He didn't want to stay in according to my mom and was a bit distressed. She sat with him and he was OK then. He did this on Monday too. Maybe it is because of the anesthesia. It could be he feels a bit funny.

In clinic they decided that he should be on the IV vancomycin for 14 days, not 10, so we had to get another 4 day supply ordered, which got delivered tonight. Kendall is doing well overall, with good blood counts and no obvious signs of effects from the radiation. His hair is growing back and is just a bit of soft dark fuzz right now. He is now 93cm and weighs 13.4 kilos (36.6 inches and 29.5 lbs).

Today after treatment I decided to throw all caution to the wind and take Kendall and Zachary to the nursing home to visit Aunt Gladys and Pop Pop (my grandfather). They haven't seen Gladys since last May, and Pop since before Christmas. I talked to the doctors and his counts are pretty stable so as long as we take some precautions, he can go to visit now and then. Kendall only blows kisses, no actual kissing, and little physical contact in general. We have antibacterial wipes and gel and limit close contact with the other residents. All in all they were thrilled to go to the "Townhouse". I think Zachary has been particularly worried about what happend to Gladys and Pop Pop, as he has asked several times in a worried tone. The boys sang some old songs with Pop Pop ("No Beer Today" and the "Underwear Song"), which were a huge hit and seemed to really cheer pop up. He's pretty much gone now and can hardly focus on a conversation, but he remembered every word to those songs and was just thrilled to hear the boys singing, even if he can't see them. All in all it was a great day.

Keep us in your prayers. We only have a few more days of radiation left! We should be done on Wednesday with any luck.

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Sunday, February 6, 2005 9:24 PM CST

What a busy week we've had! First off, we are out of the hospital now. On Tuesday when we went for radiation, they told us we were getting re-admitted due to a line infection (staph). Luckily I hadn't unpacked the car. We left late on Friday after he got a clean culture report, and were sent home on Vanco IV in those neat little infusion balls (these were more like canisters actually, but the same principle). So Kendall will be getting that 3x a day for the next week and I'll work around the schedule as best as possible. He is otherwise doing great and never showed any sign of illness other than the original fever.

Yesterday was our fifth wedding aniversary, and I have to say it was pretty good all things considered. We did start out with some slightly bratty cranky kids (well, Kendall). But soon they cheered up as we went out to the new Coldstone Creamery ice cream shop's grand opening. The boys were thrilled to see Clifford the dog and got their faces painted by the clown. Kendall too! This is really a big step for him as he has previously shown great distrust of clowns. OK, so he didn't exactly sit still and the "basket ball" looked more like an orange blob with some wavy lines in it, but he didn't scream or cry either. That is, of course, until she pulled out the balloon animals. The sound of a twisting balloon is enough to set Kendall off. Zach was thrilled. Then one of the balloon swords broke near Kendall, and the loud "POP" sent him into hysterics laughing. He then proceded to stomp on every balloon that came near him ... laughing maniacally, and we beat a hasty retreat. They boys didn't seem to care for the ice cream much though (Neil and I loved it!). They seem to prefer Baskin Robins. Maybe they weren't hungry.

We took advantage of Kendall's good counts and IV antibiotics and went to the mall for Carosel rides. The boys had a ball, then enjoyed some McDonald's for lunch (take out though... we'd already risked a lot!). Later, they went to "Nonni's Summer House" and got to see two of their cousins from Georgia, Matthew and Brian. I wish I had more time to spend with them, but they really came to see our grandmother as a surprise visit. By all acounts the boys had fun wiht Nonni and Poppi, and Neil and I got some take out Japanese and Korean food and watched boxing all night. OK, there was wine too! They dropped the boys back off at 11 so I could give Kendall his meds. Zach was out like a light. Kendall was bright and chipper until he passed out around 12:30 (just after Neil).

We were up at 7:30 for more meds, then off to church at 11 with Nonni. This is the first time I've been there since just before Halloween! There was a new minister, and I was worried that Paster Hill left in the interim. Actually, it was just a short vacation and he will be back. So we didn't get the healing mass today. They do special prayers for healing on the first Sunday of the month with anointing of the sick if you choose. I've brought Kendall several times. It's funny how time flys though. We were basically either in the hospital or in isolation for most of November, December and January! Wow. It just seemed like a couple of weeks.

Anyway, we will be back in the morning for more radiation. Hopefully it will go well. I had to replace one of his markers (they didn't tatoo him for some reason), and although we tried to draw it exactly as it was, it is hard to get it just right. They may have to rescan and reposition it. Luckly, it was just the hip mark which is much easier to do. I'm hoping to get some work in before my mom leaves for Aruba. Who knows, maybe next year I'll get to finally go!

God bless and good night to all. Thank you all for your kind thoughts and warm wishes. I've goten a lot of email this week and will try to get back to everyone when I can.

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Monday, January 31, 2005 10:04 PM CST

I had almost forgotten what it felt like to go for most of two days without any sleep, so Kendall decided to remind me. After I got home from work on Sunday morning (I worked the Saturday night 4-12 shift then stayed at my mom's because I was too tired to drive home), I was pretty tired as I didn't sleep well at Mom's (combination of too much coffee and kids too far away I think). Kendall was a bit quite and warm in the morning (temp of 99.9), but felt better after a long nap late in the afternoon. He fell asleep with me on the couch, all cuddled up in his fleecy blanket sleeper and a heavy blanket over both of us, and at 1:30am when I woke up to go to bed, I noticed he was burning up. His fever at that time was about 102.7 axillary, and after calling the doctor and packing a bag I was off to the ER at Stonybrook.

We have been very fortunate during Kendall's treatment, as this was our first ER visit during his entire treatment. The few fevers or other bad reactions he had were all while we were already in the hospital, or during the day when we could go to the clinic instead. I have to say they were very nice to us in the ER, and had us in a private room right out of triage. They took cultures of all sorts and some labwork, and it was determined that he could go to his radiation treatment, but that he should be admitted for IV antibiotics as there was no obvious cause of the fever. After radiation we were sent to the floor and given a room, only to have the oncologist decide that he would be OK being treated on an outpatient basis as we live so close by and have to come every day for radiation anyway. We can just stop by clinic afterwards to get his IV antibiotics while we are at it. Besides, he was showing signs of improving on his own. His fever was droping on its own (it was 101 when we got to the ER... down from almost 103), he was eating and drinking acceptably well and not in any obvious distress. His blood counts were good and there was plenty of WBC's to fight this off. So we repacked and left late in the afternoon.

Kendall and I slept on the couch for about two hours before Neil and Zach came home, and that seemed to be just what he needed. Kendall woke up cheerful and playing with Zach and Neil. He ate a good dinner and his temp didn't go back up, even though there was no further medication. Of course, we'll be back at the hospital tomorrow and it will probably be another long day as I have an afternoon appointment for a platelet donation. Mom is to watch the boys while I spend two beautiful hours just laying on my back watching movies or TV with needles in my arms and no children clinging to me or yelling in my ear. Sounds like bliss. I think I'll schedule my next appointment before I leave.

Kendall doesn't need platelets right now, but I'll have these go to the general pool as there is ALWAYS a dire need for these blood products. They can spin platelets out of whole blood, but they end up having so many different people's blood in those bags that it increases the risk of reaction or disease. So doing a pheresis donation so they can collect bags that have all the same donor in them is truly valued by these patients, especially cancer patients. I am always so grateful for those kind strangers who gave blood or platelets so my son could live, and I feel I need to give back some as well. I hope by example others will consider doing the same. I know it is hard to find 2-3 hours in your day for something like this, but it means so much for those who need it. Of course, standard whole blood donation is also extremely valuable and takes much less time. When you give whole blood, you are potentially saving 3-5 lives from just one donation.

Ok, I'm off my soap box and off to bed. As always, I thank everyone who is praying for and thinking of Kendall and our family. We are truly blessed.

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Saturday, January 29, 2005 7:38 PM CST

Kendall's second day of radiation also went well, with no obvious aftereffects for him. We did manage an earlier time slot (9am) and the team was ready for us ontime (miraculously), but they ended up having to re-do the films as the markings wouldn't line up to their specifications. This meant a 10 minute procedure took about 40 minutes (pretty much par for the course for us!). Kendall was so relaxed and happy going in and coming out. When we went down to the RT area, they have a little fish tank that I showed him. He was enjoying watching the fish when the tech called him, and he got a little upset as he wanted to watch fish more. The tech made an offhand remark that he could feed the fish after the scan if he came now. He went cheerfully and streched out comfortably on the table with his arms behind his head like a teenager on the beach. As soon as he woke up, he sat up looked at me and asked to feed the fish. Everyone laughed and Chris the tech ran to get some food. He happily fed the fish and helped put the cover back on the tank, then drank half a bottle of pink lemonade and ate a bag of sunchips before we left.

Kendall got to the Morgan Center late, but was happy to be able to go to Kiera's birthday party there. I almost didn't get him to leave! He played cheerfully, running around, and ate like a pig. He later had fun sleding down Nonni's front lawn again, although it was pretty cold so they only stayed out for a little bit. Both boys seem happy and healthy.

Kendall's feet don't bother him as much, but he still seems to get some pains there, and if even a little snow touches his fingers he screams! Other than that he seems to be feeling great and is in good spirits.

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Wednesday, January 26, 2005 9:00 AM CST

We've had a busy couple of weeks, but Kendall is finally ready to start radiation tomorrow. He will have 16 sessions, and be anesthetized for all of them most likely, but it is very short acting anesthesia that he has had before with no problems. They don't do this on the weekends, so it will actually take about 3 weeks. I'm trying to work out some issues with the anesthesiology department who want to scheudle him for 10:30 each day. This is obviously not desirable for us as he has to be without food or drink, and he will be distressed as Neil takes Zachary to my mom's each morning at 8:00.... then have to wait two hours before he is started, assuming everyone is running on schedule. He also won't be able to get out in time for class most of the time under that schedule, so we are not happy about it. The oncologist and radiation therapist also agree and want earlier times. Hopefully by next week we will have this worked out.

Otherwise, the boys feel great and are enjoying the snow. I'm having some trouble with the new chip on Fritz's camera, so you will have to wait for the new pictures. Kendall is growing and gaining weight, he is now 30 lbs and about 91-1/2 cm. (When he started he was about 24lbs and 88 cm). Zach is holding steady at 34lbs and hasn't been eating as much, but he is eating more healty foods and not as much junk. He seems fine overall, but I'll probably have them re-evaluate him with a blood test and maybe urine test in the near future (probably after the radiation therapy).

The boys had fun at clinic on Monday, and as Kendall's counts were finally good enough lesson some of the restrictions. The boys had fun in the Child Life playroom, and were happy to see Nurse Jinja and Nurse Debbie, as well as PCA Jo. They also visited their old friend Krista who is still inpatient (since about April I think!), but is feeling great and starting to walk around now with a walker. They also got to see their friend Julia, but she was neutropenic with fever so no contact or visiting... they did blow kisses from the hall though. All in all it's been a good week for the boys.... who are loving the nice piles of snow left by the weekend's blizzard.

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Wednesday, January 19, 2005 8:57 PM CST

The simulation for Kendall's radiation therapy was scheduled for 10:00 a.m. this morning, so they had us arive at 9:00 as usual. He had nothing since 10 pm last night, because I didn't want to wake him at 6:30 to give him apple juice or other clear fluids. Last time I did that I regreted it as it just got him riled up and hungry while waiting for the scan. I didn't wake him until I was ready to leave around 8:30 in the morning, so he just got up was dressed and right into the warmed-up car.

I vallet parked the car because of the cold. It was only about 13 degrees and worth the $4.00. We arrived in the ambulatory unit at 9:10. At 10:10 I was informed that anesthesia didn't have us scheduled until 10:30 and there would be a delay. At 10:45 I was told the nurse was coming to get us in 10 minutes. At 11:05, after yet another annoyed phone call, she came and brought us down. At least everyone was there and ready to go when we got there. I had a long discussion on the unacceptability of all this after Kendall was anesthetized. No need to get him all riled up. He actually was very good and playing nicely until the last 20 minutes when he started begging to go home or to eat. Even then, it wasn't all that serious, just some whining which I easily distracted him from. What a trooper.

The radiation therapy room is pretty facinating. It is HUGE, but the machine itself is comparatively small. Smaller than the CT machines anyway. The ceiling is covered with beautiful lighted pannels with different flowers on them. Kendall was facinated, and very relaxed. There were a LOT of people there, but he knew many of them from previous visits so he wasn't too concerned. He went right off to sleep in my arms as they injected the medicine into his line.

I knew I had 2 hours, so I went to the blood bank to donate, but they didn't have a slot available for me, so I made a pheresis appointment for next week to donate platelets. These will be for the general pool as Kendall will likely not need them. I encourage everyone who can to please consider a platelet donation, or at least a regular blood donation if you haven't given lately. Even though it is not likely my child will get your blood, someone who desparately needs it will. Especially the platelets. They can spin them out of the regular donor bags, but it takes 5-7 bags to do it and that means products from 5-7 different people, which puts the patient at even more risk for possible problems. There simply aren't words of gratitude enough to express how I feel about those people who take time out of their day to give blood or platelets on a regular basis. Without such selfless people, Kendall would not be alive today.

OK off my soapbox and onto my update. Kendall handled the simulation well and while it took a little long for him to wake up, he woke up very well and cheerfully drank his pink lemonade and ate a whole bag of sun chips. It was snowing, so we went to the supermarket then straight home.

Zach went to class today, and had a lot of fun even though it was just him and one other girl, she's one of his favorites though! A lot of the kids are sick or have low counts or in treatment right now. With cold and flu season, you have to be extra careful. Hopefully more will be in Friday's class and at least Kendall should be able to attend that.

The boys had fun tonight dancing and singing. Tomorrow they will probably get to try out their new sleds.

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Monday, January 17, 2005 8:58 AM CST

Kendall aced his hearing test on Friday, with no obvious damage to his hearing. The doctor said his language skills are excellent and forsees no problems. It is still possible to a delayed reaction to these drugs, but it is at this point considered unlikely, so he has avoided one of the long term consequences of treatment.

He still has the peripheral neuropathy (pain/tingling in his feet), but it seems better too. He is either compensating better for it, or it is improving or both. He walks further without asking to be picked up, he is running and jumping more, and he doesn't complain as much when I put his shoes and socks on. He still has some discomfort in his feet, but it seems now to be moving out to just the toes most of the time.

We have clinic today and should have his counts later on. Hopefully they will be good enough for him to start radiation next week. The plan is for simulation on Wednesday morning. He will be anesthetized and scanned so measurements can be taken and positioning marks placed. The following week they will actually start the radiation therapy for 16 sessions.

Kendall and Zachary's colds are better, so hopefully Zach can get to school on Wednesday. If Kendall is up to going I'll bring him as well. They really miss it!

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Tuesday, January 11, 2005 9:44 AM CST

Kendall has a little cold with a cough; Zachary just started coughing today too. Other than that he is doing well and is eating good and in good spirits. Unfortunately, the virus is slowing his cell count recovery somewhat, and his white cells are still too low to start radiation therapy. We were hoping to be able to set up the initial visit soon, tomorrow for that fact, but I'm nervous about anesthesia with a cough. Last time he underwent anesthesia for scans with an upper respiratory illness, he ended up hospitalized for two days with breating difficulty. He was fine afterwards, but I requested it be put off for a couple of days to give him time to recooperate, just to be on the safe side. The last time it was necessary because he had already received his nuclear injection before developing the cold, but this time a few days won't make any difference as they are not able to start treatment until some time next week at best.

Kendall is also suffering from a bit of peripheral neuropathy due to the chemo agents he's been on. This is numbness and tingling and sometimes pain in his hands and feet, and we know this because of the way he is walking and the way he reacts to having socks and shoes put on. It seems to come and go and seems worse after first getting up and in the cold. But he is still getting around very well and laughing and dancing and running too, even if it looks a bit funny. This will improve slowly over time, and should be better within a few months.

So we still wait. The cold is unfortunate because the boys can't go to school and they miss it. I have some video of them at the school if anyone is interested, it is very cute and I'll copy it when I can. It was from Telecare segment called "Through a woman's eyes." that Father Tom from the God Squad taped to help promote the idea of the Morgan Center. He feels there should be more places like this for kids with cancer to go, and I AGREE! It has helped us so much, and is a wonderful charitible organization run by some terrific and dedicated women. The boys are not actually interviewed on the show, but can be seen playing in the background of some segments. For those with cablevision, it is channel 73 by me and will be repeated for another week or so. Email me if you want a copy of the schedule or of the tape.

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Saturday, January 1, 2005 8:40 PM CST

We had a very happy New Year so far! The weather was a balmy 55 degrees! I had a hard time convincing the boys it wasn't spring time!

On New Year's Eve, we stayed home. I didn't want to leave Kendall and Zach with a sitter (my mom had plans), and we are still being careful with close exposure to others who may be sick, expecially children. We had fun and let the boys stay up a bit late -- until 10pm. They watched all their favorite movies, and I read two stories. We ordered Japanese food in for dinner for us, but the boys had their favorites, frozen taquitos and raw sugar snap peas in the pods. They wanted cookies for dessert, and we didn't have anything other than some fortune cookies from take out chinese. Our fortunes were great for the new year.... Zachary's said: "Focus on living life to its fullest." Mine said: "Be prepared for a sudden, needed, and happy change of plans." Kendall's said: "You are in for an enlightening experience." Neil's was the best of all: "Try your best to avoid arguing with your elders and superiors." Anyone who knows Neil would find this eerily prophetic! After the boys went to bed we watched movies and drank wine and watched the ball drop snuggled on our couch. It was just a really nice quiet night for us. The next morning we took the boys to the diner for breakfast, then spent the rest of the day in the park. It must be global warming or something! The park was fairly crowded and the boys had a great time. We left the first park and took them to another one, just because they love that one too. The first has standard playground equipment and a large open field to run in. The other one has slightly different equipment and a wooded area to play in. The boys love running and hiding behind the trees. It is fully enclosed and very well kept up (in a nice ritzy neighborhood). Kendall had a bit of a fright over by the swings when a huge bunch of little brown moths flew up. I guess they thought it was spring too.

So for us the new year started off just great. Let's hope it's the beginning of a great year to come.

A happy and healthy new year to all!

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Wednesday, December 29, 2004 10:08 PM CST

We've had a busy week, and Kendall and Zach have had a lot of fun. They got so many new toys they don't know what to do wtih them all! I put some of them away for now and will bring them out later. They had a nice Christmas with Nonni and Poppi at the "Summer House". The loved running around the basement with all that room. I have some very cute video of them, but not so many pictures (camera is stil broken.. bah!). On Sunday they enjoyed a visit from Grandpa Reggie (my father in law). He ended up staying the night due to the snow storm, and Neil got to try out his new snow blower on Monday! They got lots more toys and had a nice dinner with Grandpa.

Kendall had clinic monday afternoon, and almost unbelievably needed... nothing! His Hg was 10.4, his WBC was over 7 and his ANC was 5000! Platelets were 43,000. This means he most likely has fully engrafted and is producing cells. No transfusions needed. No more GCSF shots! On Wednesday they repeated counts due to a slight nosebleed Tuesday night, but the platetels had gone UP to 44,000 and the Hg was the same. ANC was down to 1500 and WBC to 3.1, but these are normal numbers for him once he's off the GCSF. This is so great because it is more proof that his system is starting to create new cells normally.

Kendall's been eating better, and so has Zach. I don't have current weights, but you can see he is filling out some and looks really good. The new picture on the front page is actually from Thanksgiving, at the end of the last transplant.

The boys loved the new kitchen table Neil put together yesterday. It is a beautiful breakfast nook set and we can all sit and eat at the table now! The boys are now finished with high chairs! Now, if we could just work on the potty training...

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Saturday, December 25, 2004 10:09 PM CST

In what can only be described as a Christmas miracle, Kendall's counts shot up suddenly yesterday to an ANC of almost 300. You need 200 and no fever to be discharged, so they sent us HOME! This was only day 8 after transplant. They normally do not expect white counts to start until day 10, and not to be high enough until day 12-14, so this is truly amazing, especially when you consider this is the second transplant, which usually is harder and takes longer. If it wasn't for the holiday, they probably would have kept us an extra day or so just to be sure, but Kendall is doing fine. He still has a mild cold, but now that his white blood cells are returning, he should fight it off in a couple of days. It is not even all that bad of a cold.

Kendall and Zach had a great time last night setting out the cookies for Santa and the apple for the reindeer. Then woke this morning to the excitement of a new train table and lots of new toys to open. They enjoyed jumping in the wrapping paper and I got it all on tape! We can't even begin to describe how happy we are! Even though he still has a lot of treatment ahead of him, it is mostly going to be outpatient from now on (baring unforseen circumstances). Kendall feels great today and is laughing and dancing and smiling, and Zach is just beside himself with joy. Neil and I are tired from a late night wrapping and train setting up session, but it is a good kind of tired!

A very Merry Christmas to everyone and thank you all for your thoughts and prayers, I'm sure they helped!

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Thursday, December 23, 2004 0:08 AM CST

Kendall’s fever had broken, only to be replaced by a cough and upper respiratory symptoms. No matter how careful I was, some germbies got through it seems! Overall he’s not doing so bad though. He started eating more, not much, but more. He drinks well now, milk, juice, ginger ale and ice pops. He seems to want mostly bland food like pasta and sun chips, but he’s getting more and more calories each day, and has only lost a very small amount of weight. Tomorrow they are going to do a calorie count and decide whether to supplement him with IV feeding or not. The diarrhea is better, but not gone, but his skin is still intact and he has no noticeable mouth sores. His lips are still peeling though, like very chapped lips….when it bothers him he asks for his Chapstick. He is playing more and sleeping less. He is even somewhat less clingy overall.

As luck would have it, Neil is now sick with whatever virus Zach had over the weekend. Hopefully he will be better by Christmas. My mom and Fritz picked up Zach early this morning. She brought him by first so I could see him, but she had to go to work so it was only for an hour or so. Kendall slept through most of it. He was a bit upset when they left (we all were), but he blew it off quickly and spent the rest of the morning playing with some of his new toys. One of the nice things about being in the hospital around the holidays (well… the only nice thing if you could call it that), is that Santa visits daily and showers us with gifts. Both of my boys have new toys each day, sometimes twice a day. Yesterday, Zach enjoyed singing with some Carolers with reindeer antlers on their heads (“Mommy, why that ylady wearing a trees?”) It’s nice though. There are a lot of kind and generous strangers out there. During his nap tomorrow I have an appointment to go “Christmas shopping” in the teen room (currently the toy storage area). Starbucks had a huge toy drive and dropped off hundreds of crates and boxes of toys… I mean they needed skids and forklifts to cart it all up! There are thousands of items there. It took all day for the Child Life volunteers to sort them all. They are letting some of the parents whose children are here on the long term plan and who cannot get out to shop pick out some toys to wrap for Christmas. Neil has had to do almost all the shopping this year, and I’m so happy to get a chance to pick out some things for my boys. There are lots of very nice things, even some clothes and books and movies. The Child Life staff told me that all these toys will eventually be given out. Some of them will be kept here for when they have children in isolation (like Kendall) and need to give them unopened toys to play with for infection control purposes. Some will restock their play rooms. Some will go to the ER. Others will go to various procedure rooms and blood drawing areas. Some will go to other programs. When people drop those toys in the boxes at a Starbucks or other donation area, they never realize just how all those toys add up or how much joy it brings to a child to get a nice new toy when they are feeling icky. To see all those boxes was just amazing.

Sigh….later this evening, Kendall’s fever returned. They are sending off new cultures and giving him Tylenol. He’s not uncomfortable (he’s sleeping quietly now), and it isn’t that high, (100.9 axillary), but it may be that he has picked up another bacteria or virus. We really have limited visitors, and I’ve been an obsessive hand washer and toy washer, but with a lot of these illnesses you are contagious even before the symptoms start so it’s hard to totally protect him. Hopefully this is just a minor setback. We are expecting him to begin generating white cells in the next 2-5 days, and that will help a lot and make us all breath a sigh of relief.

Ahh well, they did warn me that the second transplant is much worse than the first! At least he is not terribly uncomfortable or in pain. Most of these kids going through this need prescription pain killers at least some of the time, he hasn’t needed anything stronger than children’s Tylenol. We’ve been very lucky overall

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Monday, December 20, 2004 0:44 AM CST

Kendall’s fevers were better today, but it started climbing up again around 11pm (it was just over 100.2 axillary at that time). They will be checking it again throughout the night and may take additional cultures or give him Tylenol if needed. He spent almost the entire day on my lap, either watching movies or dozing contentedly. He didn’t want to eat or play, but towards the evening he played with some new toys for a bit, played some computer games with me, and had a few bites of a soft pretzel and some sips of milk and apple juice. He slept a lot, but didn’t seem distressed in any way. He does still have diarrhea and now has occasional spots of blood. They sent samples to the lab for testing, but are not overly concerned yet. These are expected and normal effects of the treatment he is getting. Actually, the doctor tells me these kids are usually much worse off by this point and he feels he is taking things quite well. He has not lost any significant weight, but they will begin parental nutrition or tube feeding if he does lose too much. They weigh him twice a day and test his blood for imbalances at least once a day. They’ve changed his fluids several times in response to electrolyte and mineral imbalances. So far he has not needed platelets, so mine were sent to the general pool, but he is down to 19,000 today (normal is about 250,000, and they infuse less than 15,000 or less than 20,000 with signs of bruising or nosebleeds). Therefore tomorrow he will likely need some. With any luck, we should be starting to see counts rise just after Christmas. He is getting his GCSF shots every day to stimulate white blood cell production.

Unfortunately, Zach has been sick too. He was vomiting on Saturday and listless, not eating. He vomited once this morning, and felt better in the afternoon. He ate dinner and played outside with Neil so I’m pretty sure whatever it was has left him. He should be able to visit tomorrow. I hope so. He is currently not speaking to me on the phone even. I think it makes him feel sad. However, Neil reports he is playing and cheerful and not too distressed, although he does ask about us on and off throughout the day. He also seems to think that everything belongs to me! Neil said Zach kept telling him to put down “Mommy’s pot” or “Mommy’s bowl”, or “Mommy’s phone”. He apparently got a bit upset with Neil for wearing “Mommy’s coat” when they went outside (his is the same color as mine). I’m sure he will feel better tomorrow if he can just come and visit us.

Sorry for such a long update, but I’m not sure when I’m going to get another chance to write. Keep up the prayers that we start seeing those good numbers soon!

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Friday, December 17, 2004 11:46 PM CST

Kendall’s temperature went up to 103.2 orally this afternoon, and he had some redness which may have been related to the fever or a mild reaction to one of the antibiotics. Due to his history of sensitivity, they changed antibiotics. It’s too early still for the blood cultures. Tylenol brings his fever down and makes him feel better, but it hasn’t gone below 100 yet and it creeps back up within 3 hours. He dosed fitfully all day, mostly on my lap. He got very agitated whenever I tried to put him down. He felt a little better in the evening and was happy to see his brother, father and grandmother (Nonni). They brought him presents from the Morgan Center. He missed the Christmas party there today. From all accounts, it was a great party. He played a little until they left, then watched another video and went to sleep on my lap. I was able to get him back into bed with little trouble.

As I said previously, this is an expected consequence and the fevers usually break within a couple of days as the antibiotic levels come up. If they are able to identify an organism in the blood cultures, they can target it with more specific antibiotics. Until then, they just try to cover all the bases.

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Friday, December 17, 2004 1:23 AM CST

Kendall got his stem cells today - half a day late. They ended up starting the chemo late the first day, and it is supposed to be a full 24 hours after the last dose before they do infusion. This would have put his infusion time too late in the day yesterday, so they decided to do it early this morning instead. Kendall dropped into neutropenia yesterday (low white cells, no immunity), so he’s been confined to his room and under strict isolation. The infusion went off without a hitch, and he did fine today and played with his brother and daddy. His appetite was a bit less, but he did eat and drink some bland foods. The preservative and anticlumping agent for the stem cells leaves a bad taste in the mouth (and bad smell in the room), so it’s not surprising he didn’t eat. Otherwise, everything went well except for a bit of high blood pressure that didn’t dissipate on its own, so they gave him some medicine to bring it down.

Unfortunately, by 10 p.m. he developed the beginnings of a fever. I was planning on leaving him with Neil tomorrow and maybe trying to work at least part of a day, but if his fever really spikes, I need to be here. Last time it got to over 104 under the arm. These fevers can get dangerous very quickly and can be hard to control. We’ve been lucky so far that he’s responded well in the past to antibiotics and hopefully that will be the case this time. They’ve taken blood cultures, but it takes a few days for them to come back, so they will start him on broad spectrum antibiotics right away.

This is an expected complication and is brought on by the low counts and chemo effects. Most likely, as has been in the past, the fever is caused by bacteria that are common to all of us but that can overgrow when the immunity gets so low. The hope is that the right combination of antibiotics will nock it out. His counts will take about 8-14 days to return, so until then, he will be carefully monitored and kept isolated. Overall, he’s been doing very well and still looks great. He’s put on weight and has grown a little over the last few months. He’s been pretty active and had very little nausea. He so far has no visible mouth sores or other skin problems, but he has the beginning of some diarrhea, which may or may not be related to the fever. They’ve ordered some special cream to protect his skin until it goes away, which should be in tomorrow. He’s gotten a lot of presents already from various kind strangers, and is enjoying his new toys. Don’t worry, they never forget Zach and he has his fair share as well. They’ve seen more of Santa in a few weeks then I have in my whole life! He also has the playroom’s kitchen set and some play food. They got a new one and brought the old one to his room. An added bonus, it doesn’t take up as much room as the train set and there is lots storage space for little toys!

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Monday, December 13, 2004 11:10 PM CST

Kendall was a bit calmer today, and he ate a pretty good breakfast. He only had crackers and milk for lunch, and almost nothing for dinner, but he seemed to feel OK and he drank well. He did eat a large pretzel with cinnamon sugar from the mall that Neil brought him. Zach was out at Nonni’s house and didn’t visit until late in the day (around 7:30). He perked up considerably then and was happy to run a few races in the tower hallway. I was pretty pooped out by then though, as I had spent Kendall’s nap donating platelets. I now have an even greater appreciation for those wonderful people who regularly donate. It is similar to blood donation, but instead of the blood going directly into a bag, it goes through a machine which separates the platelets out then gives the rest of the blood back into your other arm. They can collect a large number of platelets without any appreciable blood loss this way. You can give platelets every three days, and they are good for five days. The process takes about 2 hours – about an hour and a half of which is actually hooked up to the machine. I actually had went down to set up an appointment for later in the week, but they had a cancellation today, and Kendall was napping, so I figured I go ahead and donate now while I had the chance. If they don’t use them after 4 days, they will go to someone else, which is fine. If it looks like he won’t need them right away, I’ll go back and donate in a few days.

Kendall didn’t need blood today as his levels stayed close to the same, but they expect he probably will tomorrow. His counts are still remarkably good, so he can still play with the other kids. He doesn’t seem to be as agitated today, but he did obsess over a “Blue’s Clue’s” video for over an hour. He asked for the movie, and Neil said he would go home and get it as he needed new clothes anyway. Kendall initially seemed happy about this, but then spent the next hour and a half whining and crying for “Blue’s Clues with the Pokadots”. Thanks to the Nassau County Mother’s of Twin’s clubs for this video by the way! I had him call and leave messages on our answering machine about the movie, and had him call Neil’s cell. I tried to get him interested in another movie or activity, but there was simply no consoling him. Even when Zach and Poppi came, he only calmed down for a couple of minutes before he started up again. Luckily Neil came a few minutes later. On the bright side, he wasn’t actually screaming at the top of his lungs during all this, and it seemed closer to the normal 2-year-old obsession. The drugs should mostly be out of his system by now and I can see a gradual change already.

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Monday, December 13, 2004 0:28 AM CST

Somehow, the update from Thursday, 12/9, didn’t get posted, even though I am sure I uploaded it. I haven’t been able to get on the computer to do another update since then. Check the history for that one.

Kendall is still doing great, although the chemo is starting to get him down. They added large doses of cytoxen on Friday at midnight, to be given 3x a day. He has to get EKG’s every day to make sure his cardiac function is not deteriorating, and needs to be changed at least every 2 hours round the clock as they are flooding him with fluids. On the bright side, we are down to one screaming sponge bath a day, plus the wipe ups when he leaks through his diaper on his clothes, me, the bed, the chair or whatever else he is sitting on when he doesn’t make it until the next two hour changing time (only about 3-4 times a day). Thankfully, my mom (Nonni) visited yesterday bringing more clothes and taking away dirty ones for laundry. Kendall is extremely clingy to me right now, and gets distressed if I’m out of his sight for even a few minutes. Neil was barely able to comfort him during my 5 minute shower this morning. I usually try to do them when he is sleeping, but they had him up earlier than expected to do the EKG. He even got a little upset when Nonni visited because he kept thinking I was leaving him. Part of this is the medications which cause some mood swings and make him feel icky.

It isn’t all bad though; Kendall made friends with an adorable 17month-old redhead named Alexa. For such a young age, she sure was fully of personality and energy! Kendall followed her around most of Friday and part of Saturday (until she was discharged) with the little Winnie the Pooh walkers they have in the Child Life room. He hasn’t used one since the early days when he was first being treated and had trouble walking. He was so careful to give her “gentle hi-fives”, but I think she could have taken the full strength ones! Kendall was clearly smitten, and it helped him get over Julie leaving (she was discharged early on Friday).

Kendall had a 1 hour screaming fit today while waiting for Neil to bring Zach. He is the first one he asks for in the morning. Kendall would not eat or drink for breakfast, but gobbled down three large fried chicken strips and half a McDonald’s shake once they came! His whole demeanor improves once Zach is there, and although he didn’t want to run as much today as he did on Friday and Saturday, he did get a couple of races in and a bit of jumping, and he enjoyed wagons rides around the tower hallways. When he tired out, he stated empathetically “I need my rest! Turn out the lights. No talking! I need rest!” Then he climbed up in my lap to nap.

His counts remain stable so far, but he will probably need red cells tomorrow as they are starting to fall a bit. His chemistries are good, but they just told me he is a bit low on phosphorus, so they will be changing his fluids slightly. He is retaining a bit more fluid, and is about 2lbs heavier as a result, but it is not enough at this point for them to do anything about it. They just watch him and weigh him twice a day. Overall, the doctors are very happy with how well he yet again has been handling these heavy duty drugs. I’m told that most kids are basically miserable and uncomfortable by this point. Even though he is a bit tired, he doesn’t seem to be uncomfortable, hasn’t vomited, and he is still enjoying activities. I’m sure all the prayers are helping.

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Sunday, December 9, 2004 10:06 PM CST

Kendall had one of those fun rollercoaster days today. He actually woke up pretty cheerful, and wasn’t even all that difficult during his morning bed bath (he needs at least two baths a day with this medication to avoid skin sores). He was a bit picky about breakfast, but finally settled on some fresh strawberries with sugar, bread with extra butter, a few bites of rice krispies, and chocolate milk. He got a visit from a little girl named Julie and her mother, who brought him some Thomas videos and a train (Mavis). Julie is the same age as him and just starting her battle with ALL (a type of leukemia). Kendall really took to her in the play room last night, and he was happy to see her again. We went and played in the play room after that, but he tired out after about an hour and wanted to watch movies. He napped well until I woke him two hours later (I know, I’m mean), and that was when the crankiness started. He didn’t want any of the lunch choices I had for him, but wanted chocolate ice cream (he ate two cups of it last night, previously he would only eat vanilla). I didn’t have any, so we decided to go to the coffee shop to see if there was something there that would do. He picked out an ice cream cone and sandwich, but both were vanilla. They don’t sell chocolate! After about an hour of screaming, one of the nurses hunted us down a cup from another room, and he cheerfully ate the whole thing. Then he wanted goldfish. I gave him the last snack bag. He wanted more. Even though he didn’t eat any of the ones in the bag he had, he wanted more. He dumped them on the table and gave me one, then he wanted that one back. Much screaming, crying, carrying on ensued, until I put all the goldfish back in the bag, at which point he contentedly ate every last one of them and said he was going to the play room and I had to get up and go with him. A nice young med student named Tim entertained him for quite a bit. This was surprising, as Kendall usually takes a while to warm up to people, especially men. But within minutes this guy had him hysterical laughing and crashing toy cars into the ramp. Neil soon came, and he was happy to see him, but was upset that Zachary wasn’t there. They played a bit more, then it was back to the room where he ate half a slice of pumpkin pie and more chocolate ice cream (pumpkin is a vegetable, right?). After a nice loud screaming bed bath, he was ready to sit down on my lap and watch Thomas videos for fifteen minutes before falling asleep.

There you go, a day in the life of a chemo patient.

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Wednesday, December 8, 2004 9:34 PM CST

Kendall is back in for the second stem cell transplant. As usual for us, things started out a bit scattered. We apparently were supposed to have the hearing test in between transplants, and they tried to squeeze it in on Monday, but it would have run into his class and I decided to postpone until after he gets out. Even if he has loss, it is mild and well compensated for at this point anyway. Kendall learns new words at an astonishing rate and his pronunciation is better than his brother’s. He responds to sounds normally too. The doctor agreed that waiting a couple of weeks wouldn’t make a big difference. Then we had a delay of a day because the thiotepa wasn’t ready. I knew I should have kept our appointment for the echocardiogram yesterday, but decided to switch it to this morning before transplant so we could do everything on one day. Well, we had it at 10:00 am, and by 6:30 there was still no reading. By the time they got a reading it was 7pm before things got started. I wouldn’t mind so much, except that this is a new drug and if there is a bad reaction of some sort, I’d rather it be in the daytime when more people are here and he is watched more closely. However, as of 10pm, he is fine and finally asleep. He didn’t nap today, but when he was ready to fall asleep around 8:00 we still had to do the dressing change and take the tabs off from the EKG (I knew I should have left it till morning!). This woke him up and kept him lively and somewhat nasty until about 9:30. Hopefully he will sleep through the night.

I’m also missing Zachary tonight. He developed a nasty cough at 4 a.m., and we couldn’t have him visit. It’s bad enough that Kendall was definitely exposed to whatever it is. So far he is OK though. Hopefully he will feel better and be able to visit soon.

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Saturday, December 4, 2004 4:29 PM CST

Kendall had a busy and fun week! His counts were so good on Monday, he didn't need to go back to clinic this week and needed no further blood or platelets! The doctors are stunned.

On Monday and Wednesday, he had fun at the Morgan Center. By Friday, he was quite comfortable there and there were no tears or fussing on the way in. He hung up his picture for attendance like Zachary and started playing. He knew the names of most of the other children by then and had a great time at a birthday party for one of the little girls. He was relaxed and happy and laughing his head off.

After school on Friday we went with Nonni to see Santa for pictures. They aren't the best pictures of my kids, but it will have to do. At least they didn't cry pitifully. They had fun at Broadway Mall's new play area. They didn't even want to go on the little rides, just running around on the slides and climbers. I figured as his counts were pretty good and we are planning another 3 or 4 week stay in the hospital next week, we should let them have some fun together, even if it is a bit risky. We were careful to wipe hands often and use antibacterial gel. Besides, when we got back to my Mom's, my brother was there coughing all over the place. I shuffled the kids upstairs for baths when I realized he was sick, but there was probably a good 10 minute exposure while I was out picking up marshmallows at the store. Ah well, can't be helped I guess. We've been luckly that Kendall hasn't had a lot of colds or fevers or other complications during treatment so far. Lets hope our luck holds out!

On Saturday morning, I really ran them ragged! We went to Holtzville Park (yes, in this cold) and fed the goats and geese. The bears weren't out, but most of the other animals were. We walked through their greenhouse and put money in the well for the animals. The boys love it there. I should have left at that point. I know I should have. But the boys wanted to go up the stairs. There is a large hill (old landfill site) with stair that you can walk up. So up we went to the top to see the view. It is beautiful on a nice clear day. We walked along the path collecting rocks. I usually walk back down the stair when we go this way, but the slope down to the walking path looked pretty good and I figured it would let us off on the walking path close to the end. I figured wrong. After we went down the slope to the paved area, the boys were at first doing races a few feet at a time. They like to do "on your mark, get set, and go!" then run a little ways... they switch off who gets to "win". As we kept going, I realized it was longer than I thought, but now it was too late to go back the other way. After about half a mile of running, Zach started to poop out and didn't want to run. A few minutes later, he wanted to be carried. Then, Kendall wanted to be carried. Loudly. We still had close to half a mile to go, and there was no way I could carry both that far. We went slowly, alternating who got carried, while the other either screamed pitifully (Kendall), or walked along sadly and begged to be picked up (Zachary). People passed by shaking their heads at the horrible mother who would force her cute little toddlers around this huge walking path in the freezing cold when it was clearly nap time.

We finally made it back to the car and the boys got some McDonald's as a reward. I felt bad for them, but they took it pretty well all in all. I left for work a little later, and they were happy to stay and watch movies with daddy... a little TOO happy maybe!

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Thursday, December 2, 2004 12:38 AM CST

Kendall still continues to amaze the doctors with his quick recovery. He's been enjoying being home, going to school at the Morgan Center with Zachary and playing with his new toys and trains. We also went to the mall to see Santa, but the line was too long, we will try again on Friday in the daytime. He's been feeling great and his counts recovered in record time, so they of course want to give him more chemo now! We will be back in the hospital on Tuesday for the second stem cell transplant/recovery. He will again get 5 days of very high dose chemo, followed by a day of rest, then the cells will be given back to him, and hopefully his counts will recover enough to be home before Christmas (it will be borderline though). We will be going to a christmas party this weekend hosted by Mother's Kiss, so that he will get at least some holiday festivities in before he starts feeling crummy again.

I wish we could wait until after the holidays, but the doctors tell me it is important to do these treatments as close together as possible in order to get the best results. After this, we are moving on to Radiation Therapy.

Hope everyone had a happy thanksgiving, and please forgive the lack of christmas cards this year, I don't think I will have the time to do them. I do wish everyone a happy and healthy holiday season.

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Thursday, November 25, 2004 7:40 AM CST

Some may think that because a person has a child with cancer, they don’t have a lot to be thankful for. The truth is that going through a traumatic experience such as this makes us more aware of those people who mean so much to us.
I am thankful for my children. They are such a joy and inspiration to me. Kendall has an amazing strength and determination. Zachary is such a kind and gentle child. They are both very bright and beautiful and have such a great sense of humor and fun. They have lifted my spirits and brought me closer to God.
I am thankful for my husband. Without him, I don’t believe I’d have the strength to deal with everyday life, let alone a crisis like this. He is my main source of love, support and comfort. He is a true friend, as well as is the love of my life.
I am thankful for my family and friends. For my grandmother who even through her own illness and problems tries to help us in any way she can. For my step family on both sides: Fritz has done so much for us, and his Cindy and Pam are always so thoughtful; Barbara, Kathleen, and Michael all have shown such love and support. For my brother Nick and his wife Liz and my beautiful nephews Andrew and Alex are so loving and caring, and they always in my heart. Yes, even for my brother Frankie, who helps entertain my boys and makes them snowmen in the winter. Neil’s father is always there for us, both emotionally and financially. My family down in Georgia has been so kind and supportive. Our friends keep in touch and let us know they are out there thinking of us all the time. They are always willing to help when asked. We received many cards and gifts for the boys, and some even raised money to help with bills or sent us food. Then there are the people at my job who have shown unbelievable understanding and compassion during this time. And the many people who have given blood or platelets. Even though I have no idea whose blood is running through Kendall at any given time, I’m so grateful for that person who gave the gift of themselves so that my son could live. I will never take such donations lightly again.

I am thankful for my father, even though he has gone on to heaven now. In the end he taught me the value of time and the importance of living for today. He also taught me the importance of friends and family and of taking time out to just have fun. I sometimes talk to him now when things are quiet and I’m alone, and I feel he is here watching over me and my baby.

I am thankful for my mother. She tries so hard to be everything to everybody, that she often forgets herself. She thinks I don’t appreciate her, but the truth is I would not be here without her and I am eternally grateful for her constant love and support. She takes a lot of abuse, absorbing the brunt of the anger, frustration and pain of those around her, but only gives back love.

Lastly, I am thankful for each day that God grants us – even the tough ones that make us stronger and teach us how to live.

“The best things in life aren’t things.”

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Wednesday, November 24, 2004 3:40 PM CST

Kendall is amazing. Simply amazing. He has an ANC of 40. I realize that many of you reading this won’t understand that, but it means his white cells are starting to return – several days sooner than expected. He will still be compromised for a little while, but they are planning on a Sunday discharge at this point. He has managed to get to this point with almost no fevers, excellent nutritional status, no major mouth sores or other skin problems (none that needed any pain meds anyway), and a cheerful, upbeat disposition. We are EXTREMELY fortunate. He will have to do this again, and the next time will use different drugs and recovery may take longer, but for now, we are ahead of schedule and doing very well.

Happy Thanksgiving to all. We have a lot to be thankful for right now. Tomorrow, I will post my thanksgiving list.

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Tuesday, November 23, 2004 4:25 PM CST

Kendall continues to do well, but is getting a bit tired of being here, and so am I! His red cells were low again so he's getting a transfusion today, and he will need platelets again tomorrow. Other than that he is OK. He does miss his brother and father, and is really happy when they come visit in the evening. He is otherwise quite cheerful and playful and I've been finding creative ways to keep him occupied all day. Today we spent a long time blowing and catching bubbles (and stomping bubbles, claping bubbles, bashing bubbles). He also spent quite a while playing Thomas games on the computer. The doctors feel he is doing well and his white cell counts should be coming up withing the next 2-4 days. Once they start, it usually goes pretty quickly though. Lets hope we get to be Thankful for neutrophils this Thursday!

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Monday, November 22, 2004 10:47 PM CST

Kendall is still doing great. His protein levels show his nutritional status is good (at the high end of normal). He had a long nap, but played energetically with Zach in the evening. He's still up at 11:00 unfortunately (bordering on midnight actually), but otherwise is fine and we are just waiting for those little stem cells to grow.

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Sunday, November 21, 2004 10:05 PM CST

Kendall had a nice night with daddy last night. They played with trains and watched movies. He ate well for Neil, more than half a hot dog (and they are large ones) without the bun, chicken stew without the little pieces of chicken, green beans, and a bunch of sun chips. He also managed to drink down a whole 8 oz of milk. He slept well through the night and was quite cheerful when I arrived. He proceeded to polish off a good sized Belgian waffle, complete with syrup and butter. The doctor who was just starting rounds said she was “amazed” at how well he was holding up. She said most of the kids cannot not eat during transplant and need IV nutrition or feeding tubes. Other than that nasty fever in the beginning, which was gone in less than 24 hours, and some mild diarrhea, he’s had no problems whatsoever. No vomiting since the end of chemo (and very little during chemo) other than once when given a nasty tasting medicine right after eating (we now wait an hour for that one). No mouth sores are seen, although he does occasionally rub at his mouth or complain of a “boo boo” when the toothbrush or fork touches a tender spot, but nothing that requires pain medicine or stops him from eating and drinking normally. No diaper rash… we do put a protective ointment on several times a day due to the diarrhea. His blood work continues to be good with only minor changes in his electrolytes, easily remedied with changes to his fluids. The mild nosebleeds are gone after the platelet infusion. He is playful and active, and wanting to get out of this room!

Kendall enjoyed playing with Zachary most of the day and having the whole family together was nice. Thank God for the train table set they put in here (the play room is under renovation and they needed a place to keep it). He does get a bit tired or cranky at times, but a nice nap usually takes care of that. I’m so happy they are continuing to let Zachary visit as long as he is not sick. I’m sure that is part of the secret to Kendall’s success. If you see those two boys playing and laughing together, you just know it is helping him. Zachary always says as we are getting to the hospital “Kendall’s feeling better. I make Kendall feel better.” He always wants to stop to get a little gift for Kendall, usually a lollipop or bag of chips or cereal. He is very gentle and careful with him. He does a better job of moving around his lines and tubes than we do!

I myself am feeling pretty good and enjoyed sleeping in a regular bed and waking up late! I can’t say I enjoyed work, but it was a pretty quiet night and it was good to get away for a little bit. Kendall’s white cell count is still low, and still no neutrophils (those are the cells we need to get enough of in order to be discharged), but the doctors are confident they will be coming up soon as he is recovering so well overall. I always said Kendall was a real fighter! He keeps proving me right.

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Friday, November 19, 2004 9:01 PM CST

Kendall had another pretty good day again. Still no fevers. The doctors suspect there are mouth sores starting, because he occaisionsally rubs in his mouth and will only eat soft bland foods, but so far cannot actually see any. She said that if he shows signs of pain they would give him something for it. For now we just keep up the rinses and the glutamine. Glutamine is an amino acid supplement that may help to protect the lining of the mouth and gut somewhat. There is no scientific proof that it works in children, but there have been some promising studies in adults and a lot of anectdotal evidence of it helping. Both the doctors said they thought it wouldn't hurt an may help when I asked. In any case, he does have some diarrhea now, and he shows signs of discomfort when he goes. But so far there is no blood or other signs of intestinal breakdown. This is good but it is still early. He is off the antinausea meds, and he did vomit after breakfast. However, I had just given him his mouth wash and he gagged on the nasty taste, so that was probably the cause. I was careful to wait at least an hour after eating to do his mouth care after that. He's lost another half a pound, but is still within a normal range of weight and they are not yet concerned. He had some chicken tenders and broccoli for lunch, and ate a reasonable dinner of waggon wheel pastas and some bites of carrot and turkey.

Kendall was thrilled to have Nonni and Zachary visit him, and played nicely most of the time. He was a bit grumpy when they first came as he woke up, but later he settled down and had a nice evening. Neil finally fixed the VCR in the room, so we were able to get rid of the stupid TV cart that was taking up so much space.

Towards the end of the day Kendall was getting some slight nose bleeds. Not a lot, just a little spot of blood when he sneezed. He is also a bit congested and hoarse, which could be from a cold or from sores further back in the mouth or esophagus. It doesn't seem to be distressing him right now though. They took a blood count to check the platelets, and they were still in the 28,000 range. They transfuse when they drop below 20,000. So far so good though. Keep up the prayers!

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Thursday, November 18, 2004 10:05 PM CST

Kendall’s still doing pretty good today. His fever has not returned. The organism that was cultured was identified and is sensitive to all the antibiotics he was being given. They cut out one of the antibiotics and the other two will be phased out over the next couple of days. He did develop some small mouth sores late in the day, but so far they seem to be more annoying than painful. He’s eating soft foods only right now. He had pancakes for breakfast, snacked on cereal and chocolate during the day, and ate some turkey stew, green beans and spinach lasagna baby food for dinner. He even had some ice cream later. His red cells were a bit low so they gave him a blood transfusion. His platelets are also dropping fast, so he will likely get his first platelet infusion soon (within the next 2 days I think). He had a long nap in the afternoon, and woke up quite cheerful. He was thrilled to see Zachary and Neil, and the boys played nicely together for a couple of hours in the room. All in all, his spirits are good and he is relaxed and comfortable.

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Wednesday, November 17, 2004 9:04 AM CST

Poor Kendall had a rough night. The second blood culture they took yesterday came back positive for a gram negative organism. We will get more specifics and sensitivity back later today. This grew in less than 12 hours. They added another antibiotic, but the fevers hit hard in the night and had got up to over 104 axillary by 5 am. They added a third antibiotic and switched from Tylenol to Motrin, and brought in a cooling blanket. He had on and off chills with shivering too. But they finally got the fevers back under control. Once the got the fever down, he felt better and ate a bit. He’s dozing comfortably now. He is officially neutropenic, and we now wait for his stem cells to engraft and start making white blood cells again.

I’m going to try to nap now too.

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Tuesday, November 16, 2004 4:56 PM CST

Well, Kendall got his stem cells and all went off without a hitch. His fever improved later in the day and is felt to be due to the surgery. They have him on monitors and are watching him closely, but so far so good. Kendall's has no incidents of vommiting or diarhea yet, no mouth sores, or bleeding. His counts remain good, but are slowly declining. We are prepared for the sudden drops that are likely to happen, and are ready for the worst days which should be days 5-10 if he progresses like others have. There is nothing to do now but wait until his stem cells graft and start producing new blood cells.

The presevative in the stem cells leaves a bad taste in your mouth and a bad smell on you for a few days, so he likely wont feel much like eating. He takes a few bites of food and shakes his head, but they are checking his weight twice a day and if he drops too much they will give him some IV nutrition. Kendall is in good spirits though and playing with some new toys and watching new videos. Tonight was a beautiful sunset and he enjoyed watching it through the window with me.

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Tuesday, November 16, 2004 6:19 AM CST

I didn't really want to go to work yesterday, but Fritz was so nice to want to help out, and I couldn't work Sunday night because Neil still had a cold and Mom and Fritz had a wedding to go to. But I went and Kendall and Fritz had a nice quiet day from all acounts, until the late afternoon.

As I’m driving to the hospital with Zach, I get a call from Fritz telling me that Kendall lost his tube. I thought he said tooth at first, but then the nurse came on the phone and said his broviac line broke and needed to be replaced. She wanted to know how soon I could get there to sign consent. Apparently, the IV line caught under a table or something when Fritz went to pick Kendall up, and one of the arms broke off. They tried to repair it, but the surgeon didn’t feel it would be good enough for the stem cells the next day, and he prepared for general anesthesia and replacement. Kendall came through the procedure fine and has a nice shiny new broviac line for transfusion today, but I think that is enough going to work for me for a while. This is not uncommon and could happen to anyone, but I felt awful about not being there for him, and they had to wait until I got there to sign consent so they could do the procedure.

Kendall was playing and laughing with the anesthesiologist last night, even with a large hemostat and gauze pad taped to his chest. After the procedure, he pigged out on turkey stew and green beans, and polished off the rest of my Special K (dry). His fluid retention is better and he dropped another half a pound to make him almost back to normal. He did develop a mild fever during the night, and they are giving him antibiotics and Tylenol. I don’t think it will delay the stem cell transfusion, but I’ll see what the doctors say later.

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Sunday, November 14, 2004 9:32 PM CST

Kendall’s still doing well at day -3. He did vomit a couple of times, but quickly blew it off and ate well last night and today (all things considered). He was very quiet again today, but not cranky or uncomfortable. He wanted to be carried everywhere for the most part, and spent most of the day sitting on my lap (or Poppi’s) watching TV or playing quietly. He made a nice sticker chart where he can put the stickers he gets for taking his medicine or otherwise cooperating with the nurses. He enjoyed seeing Zach, even if he wasn’t up to rambunctious play. Zachary was very good and played very gently with him. Kendall didn’t nap much today, and he got to sleep late, but that’s OK. He did get a little upset talking to Neil on the phone. He misses him and said he wanted to go home. But he seemed to accept it when I told him he had to wait until his numbers got better. I don’t know if he understood, but he nodded and cuddled back up with me and asked for more dippy sauce (syrup) for his waffle. He was nauseous when they gave him the last chemo treatment, but only for a couple of hours then he ate well. He’s been maintaining his body weight and his counts remain good, although they are starting to drop. Tomorrow he gets a day to rest, then on Tuesday he will get back his stem cells. So far, so good!

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Saturday, November 13, 2004 10:18 AM CST

Well, the chemo is finally catching up with Kendall and this morning he is very quiet. Not sick though, just quietly watching movies and resting. He is smiling and comfortable and eating well still. It may also be that his sleep was very interrupted last night. At around 10:30 when she was doing his evening vitals, the nurse noted that his heart rate was a bit slow. Not dangerously so, but slower than normal for him, even accounting for his resting state. The evening resident decided to put him on a monitor with frequent blood pressures taken. They hooked him up and he slept quietly until at around 4 am, when he woke up as they took blood and vitals. He probably would have drifted right back to sleep as usual, but the resident decided to have them do an EKG while he was awake, just in case. I figured it would be better to get it over with while he was up anyway. The EKG was fine, and he went right back to sleep afterwards, but was a bit restless for an hour or so.

Other than that he is still doing very well. His counts are still good and even though he is a bit quiet, he doesn’t seem uncomfortable. When Zach comes to visit I’m sure he will perk up a bit.

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Friday, November 12, 2004 10:11 PM CST

Kendall was a bit moody today. He ate like a horse, and has gained another half pound, but they are still just watching him. His blood counts were good and he is still able to leave the room for now. He was mostly in good spirits and enjoyed watching "Boo Boo Choo Choo" (Thomas the Tank Engine story) over and over and over again on my laptop. He went through bad phases where he was very angry or excitable, then he'd quiet down and watch a movie or play nicely until it hit him again. It is like Jeckal and Hyde.

The doctors are satisfied that he is doing well. Tomorrow I believe we stop these chemo's then do a third one for 2 days. He's had that drug before, but not in these kinds of doses. Hopefully it won't be too hard on him.

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Thursday, November 11, 2004 9:42 PM CST

Kendall's doing well so far at day - 6 and counting (stem cell infusion is day 0... the chemo days are counted back to day -7). After a full day of 24 hour chemo, Kendall is feeling quite spunky still. He's eating and drinking very well... they gave him some medication for nausea, and one of them actually makes him a bit hungry. He's retaining a bit of fluids, but they are just watching it for now. His labs look good so far, and he's been able to run and play in the play room and even outside for a bit (although the wind scared him and he wanted to go back in pretty quickly). He was happy to see Zachary and Poppi visiting tonight, but was sad that Neil couldn't come... he has a cold. I'm sure we have all been exposed to this cold buggie... hopefully I'll manage to will it away because I don't know what I'd do if I couldn't be with Kendall! I'm hitting the vitamin C and Zinc hard!

I realize that Kendall will be feeling crummy from all this pretty soon, but he's done so well with all the other chemos that we are hopeful it won't be too bad for him. So far, he's a real trooper!

Keep up those prayers.

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Monday, November 8, 2004 10:07 PM CST

Kendall did pretty good for his tests today. It was mostly just blood work and the echocardiogram. They decided he wouldn't be able to cooperate for the pulmonary function tests. He spent most of the morning with Zachary playing in the clinic's playroom. There we met a very cute set of twin girls, one of whom has diabetes. They all played together very nicely.

The doctor went over the treatment plan with us, and answered most of our questions. Kendall will likely be in the hospital for about 3 weeks for each transplant, with a couple of weeks home in between. He will be severely compromised and limited in activities. Apparently, one of those limitations is leaf pouncing. When I mentioned how much fun the boys had pouncing on leaves yesterday, nurse pratitioner looked horrified. Apparently, leaves can house molds and fungi which can be potentially dangerous. Kendall seems fine right now, and they are not too worried, but they said no more leaf jumping until after treatment. So Neil will be raking sooner rather than later!

We otherwise had a nice day, with a trip to the park and and Trader Joe's, and dinner at Friendlies. Zach passed out on the couch afterwards. Kendall sat up until 8:30 watching movies and eating cookies. He drank down his vanilla fribble, and half of Zachary's as well. Keep up the prayers!

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Sunday, November 7, 2004 9:46 PM CST

We've had a busy weekend! Yesterday we played with my brother's kids for a little bit in the morning. Then we went off to Nonni's house where they napped for WAY too long. We then went to the hospital to welcome into the world beautiful little Paige Nicole who was born on Friday afternoon to our dear friends and Zachary's Godparents, Rob and Linda. The boys had a great time in the maternity ward looking through the window at the baby and running up and down the hallways with Sophie, a very friendly 1-year-old who was quite taken with them. I'm sure that a hospital maternity ward is no place for the immunocompromised, but you've got to live too!

Today we all went with friends (Sophie and her mom Helen, and Kathy with her daughter Jessica) to the Aquarium in Riverhead. This is one of the boys favorite places and I wanted Kendall to have a fun weekend before transplant. Both boys had a great time and were talking for hours about the sharks and stingrays and seals (not to mention Sophie and Jessie). Oh, and they got to meet the aquarium's mascots, a big purple octopus and a shark. Kendall shook the octopus's hand, but Zach was too nervous, he did wave and say hi shyly though. When we got home, after a quick nap, the boys spent an hour outside crunching and pouncing on the leaves that my husband should have been raking up this weekend, but instead he was out running around with us all day! I am kind of liking the leafy look... it's very colorful. Neil can rake some other time.

Zach was exhausted after all this, but Kendall was still going strong after dinner and bath, and still chatting up a storm as we put him to bed. They drifted off mumbling about seahorses and starfish.

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Saturday, November 6, 2004 8:18 AM CST

Check out the photo page. I've added a picture of the boys trick-or-treating. Can you believe this was only 9 days after major abdominal surgery!

Kendall's feeling great right now. He had a nice visit with his cousins yesterday, and I had to drag him away. He just loves to play with them. The boys were running and jumping and pouncing all day, and at 9:00, he still was going strong! Kendall's gained back one of the two pounds he lost during surgery (at least), and is full of energy. We are getting ready for stem cell transplant next week. Monday's postsurgical scans came out good, and we are going into transplant with no obvious disease, which is good. This Monday they will be doing a bunch of testing to make sure his body can handle the high-dose chemo and as a baseline. I will go over the procedure with the doctor at that time too and will post any pertinent information. They are planning on beginning on Tuesday or Wednesday (I'm voting for Wednesday!). They give 7 days of high-dose chemo, which will basially anhilate his bone marrow and immunity, then they give him back the stem cells they collected to reseed the marrow. Just incredible what they can do nowadays. Even after we come home, Kendall's going to be severely compromised for a while, and we will be restricted, so we plan a fun weekend, starting with a trip to the park today, and the aquarium tomorrow.

Keep up the prayers, and get those platelets ready. This is the stage when he will be needed them. I will try to work with the blood bank to set up donation appointments for those interested. At this stage, I can also donate some myself. Because of HIPPA laws, I have no way of knowing who donates what, so I'd like to just thank everyone who donates blood and platelets, even if it goes to other people. It is truly the most selfless gift and very precious to those who need it.

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Tuesday, November 2, 2004 8:22 PM CST

Today was a great day for me and the boys. It was just like before Kendall got sick. It was nice not working and just spending time with them again. I must do this more often!

We went to the Holtzville Ecology Site zoo where the boys enjoyed feeding the goats and geese, and seeing the bears, llama, foxes and other animals. We got there as they were getting ready to feed the animals, so they were very lively. The weather was beautiful (little chilly, but nice) and there were NO BEES! I love the fall. We went grocery shoping afterwards, and the boys were on their very best behavior. Absolutely charming as they sat in the double wagon and played "hi-five" with one hand while eating marshmallows with the other (marshmallows are wondeful motivators). At the register they helped me put the groceries on the counter (the light, unbreakable stuff anyway), and listed well to me without me having to yell even once. They dozed in the car but managed to wake up at home to eat lunch, then went right back to sleep for their nap (a full hour and a half!).

When Neil got home we took the boys to vote. I was afraid to take them by myself earlier. They were very excited. We got there and the school was MOBBED! I mean you couldn't get in the door. Also, Neil had forgoten his ID and figured he'd need it, so we decided to go back and get his wallet, then maybe get a bit to eat and come back later when it wasn't so busy. Kendall wasn't hearing of it. As we tried to leave, he began a demanding wail of "I want to vote. I want to vote!!!!" Zachary soon chimed in and we were the focus of much attention, complete with head shaking and tongue clacking. We explained that we would come right back and it was too busy, at which he ascerted "No! It's my turn. I want to vote!". We finally got him back in the car. The entire ride he kept reitterating: "I want to vote. I want to vote!" Neil tried to explain to him that he was really too young to vote, but this almost set off a full blown tantrum, so we told him we'd go back and vote. When we got back to the school it wasn't so busy and the boys were still on their best behavior. They played with their toys with relatively little shouting and grabbing. When I went into the booth, both boys ducked under the curtain with me and each got to flip a lever (I chose the lever of course). They were so proud and thrilled at getting to vote! Neil also ended up with two booth mates during his voting, then we were off to Ruby Tuesday's for takeout! The boys had the curbside waitress in tears as they began one of their fake laughing episodes. I don't know what started it, but Zach was soon guffawing loudly in a very exaggerated mannor, and Kendall was cackling like a witch. Neil and I couldn't help but laugh, as did anyone within hearing distance. They must of thought we were a bunch of nuts!

Both boys ate like little piglets and watched one movie before bed. It was such a great and perfect day. And I thank God for giving it to us. Tomorrow, we go to the clinic to talk about the high dose chemo and stem cell rescue that will keep Kendall isolated (and possibly hospitalized) for several months.

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Friday, October 29, 2004 10:04 PM CDT

After a few minor delays and annoyances at the hands of the Nuclear Med. dept at Stonybrook, we finally made it to the Halloween party and everyone had a great time. Kendall was apprehensive at first (he always is going into the school), but once he realized I wasn't leaving him there, he settled down and picked his pumpkin out of the "pumpkin patch" and decorated it very nicely with marker. The he did his craft (they made cute Halloween door hangers), and actually enjoyed the costume parade and, of course, the trick-or-treating. Well, there was a bit of stress at first as the boys didn't understand why the candy had to go into the bag rather than directly into their mouths, but once they realized they were getting more candy than they could hold, they got into the spirit of things!

Kendall was a bit cranky after all that activity and I was going to leave, but then he saw the cookies and juice and wanted to stay and eat. Both boys said goodbye and gave hugs to all the teachers and some of the kids. We almost left cheerfully, until the parking lot tantrum when Kendall did not want to hold my hand and walk to the car because he wanted to hold his balloon. I finally had to pick him up and carry him kicking and screaming to the car. Luckily, Zach was in a cooperative mood and walked quietly next to us.

After a nice nap at Noni's house, the boys were happy to see Mimi who was also just home from a week at the hospital. We had a relatively nice afternoon, until it was time to change Kendall's dressing. I realize that it probably hurt a bit more with the infection and all, but it wasn't from pain he was screaming, but anger and frustration. He was screaming for me to put his dirty clothes back on for some reason, and even tried to get them out of the laundry basket! He was tired and fell asleep in the car before I hit the end of the block though. On the bright side, his broviac site looks a lot better. It was still a bit red, but the oozing was gone. I guess those slightly less nasty antibiotics are good enough after all.

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Thursday, October 28, 2004 8:20 PM CDT

We are FINALLY home! Kendall did remarkably well as usual. After the fever broke on Monday, he continued to improve quickly and they took the NG tube out on Tuesday. Wednesday they tried him on a clear diet and he did fine. Today they let him eat, and he had cheerios for breakfast and chicken nuggets and fries for lunch. They told us we could go home on a regular diet. A minor setback occured when the nurse when to change the dressing on his Broviac line (the catheter they use to give medications and take blood), and it was red and oozing. We had to wait for a doctor to look at it and she finally said we could go home with extra cleanings and oral antibiotics. She prescribed a new antibiotic, and for the life of me I could not get him to take this stuff. It tasted AWFUL! He gagged pitifully. I tried mixing it with everything in the house, but to no avail. This was just too strong and bitter. It got to the point where he started gagging just looking at the cup and syringe. So I called the doctor who prescribed something less horrible, but hopefully it will be effective enough.

We are scheduled for followup scans on Monday, then a consultation on Wednesday to start the first high dose chemo with stem cell transplant. A lot depends on how quickly he recovers and on those followup scans. We hope they show no residual disease! If they do show some, it is OK at this point and wont change the protocol, but it would be nice to go into stem cell transplant without obvious tumor.

Kendall is feeling good and happy. He was playing with Zach all day and they both enjoyed a great puppet show by "Mr. Mouse" (after Kendall's initial fear of the mouse was gone). He's been off morphine sice 5pm last night without any major complaints. He did get a little tylenol this morning because he seemed a bit uncomfortable and was reluctant to get out of bed. This seemed to work fine for him and he was up and running the halls within the hour. I think it was a month before I was even walking quick (let alone running)after my c-section! I think these kids are just amazing at how quickly they seem to recover.

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Monday, October 25, 2004 6:12 AM CDT

Kendall had a bit of a tough day yesterday, as they had to start getting him up. He'd been spiking fevers the night before and having some trouble sleeping, but they got that under control by day's end. We managed to get him up and sitting in a chair for a couple of hours, then later we went for a walk in his stroller. Last night was the first time that Neil stayed with him overnight instead of me. I was worried that he'd be all upset, but when I last spoke with Neil, Kendall was fine and was watching movies comfortably. If all goes well they will try to have him up even more today (maybe walking) and maybe start some clear liquids.

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Saturday, October 23, 2004 10:14 AM CDT

Surgery went well. Kendall is doing just fine and is being kept comfortable on pain meds. The surgeon feels he got all the visible tumor out and that there was no obvious invasion of the adjacent organs (kidney, pancreas, intestines, etc). There was very little blood loss and he did not need a transfusion. He has a nasogastric tube in his nose, but they will remove that in a couple of days when they are sure he is eating/drinking OK (probably Monday). It is not bothering him much though. Kendall was kept overnight in the Pediatric ICU, but will be moved later today to a regular bed in the oncology unit. We expect him to be in for 5-7 days.

We are all very relieved and thank everyone for their prayers and good wishes.

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Thursday, October 21, 2004 9:15 PM CDT

Kendall and Zach both felt really good today, so we went to get their flu shots. They were so good, the nurses gave them like 4 lollipops each AND stickers. They tried to give them more lollipops, but the boys said "no thank you" and handed some of them back. I mean they hardly even winced and only cried for about 1 minute seconds each (I think Zach was more like 30 seconds). They even thanked the nurse afterwards (for the lollipops, not the shot). How's that for brave kids.

We went to a local park after that and they enjoyed watching some men play baseball in the field next to the playground. They also really loved romping through all the nice sand. I'd never been to this park, I just asked at the doctor's office where one was in the area and they told me about it. It was an old-fashioned playground with metal equipment and LOTS of sand everywhere. The boys were throwing themselves into the sand and making sand angels. What a mess. We followed this by a trip to BJ's for supplies, then off to Grandpa Reggie's house. They had lunch with him and lots of fun playing "I see you" in his livingroom. Then we went out back to chase the pigeons and geese. Lots of fun. We stopped at my mom's on the way back for dinner, and I debated on leaving Zach there, but as Kendall's surgery isn't until 10am, I decided to let him come home and Neil will drop him off in the morning. He really wanted to come home with us.

Well, I'm beat now. Will be packing our stuff for tomorrow so I'll be ready. Keep praying for a good outcome... so far I think all the prayers must be working because he is doing remarkably well.

Please also keep Sydney Dungan in your prayers. Her father Mark is the one who started the Lunch for Life campaign (the link is in my links list), and they are going through a tough time right now. Please consider making a contribution to this worthy cause. The money goes directly to neuroblastoma research through the Children's Neuroblastoma Cancer Foundation.

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Monday, October 18, 2004 9:31 PM CDT

The oncologists confirmed that Kendall's tumor has shrunk dramatically and all looks good for surgery. The bone scan was still negative, and the MIBG scan showed no new areas of uptake and a proportionately smaller area in the original site. It is felt that this is a very good sign. Kendall's blood work has all been good so far, although there will be a few extra labs before surgery that I don't have results on yet.

Kendall feels great (his cold is gone) and we had a wonderful time yesterday at the Atlantis Marine World in Riverhead. The boys just love it there and now they even have emu's and monkeys! They had a ball doing their animal immitations. Kendall has also gained a small amount of weight (about a half a pound), and is eating up a storm.

Thanks to all for your continued concern and support.

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Saturday, October 16, 2004 9:55 AM CDT

Kendall's CT look's good according to the surgeon. The tumor has shrunk down even more, and he feels pretty good about taking it all out. Let's pray for no surprises!

Kendall's recovering from a rather nasty cold, but is otherwise fine and feeling great. We hope to go to school on Monday if his symptoms are gone (already it's down to just some sniffles and slight runny nose). He's looking forward to spending some time with his cousins today. He misses them terribly and often asks about them. With all thats been going on, we haven't been able to see much of them:(

I've joined the "Lunch for Life" campaign (please click on the link below). I think it's a great idea and hope others will spead the word. They ask that you donate your lunch money (let's say $5) which goes directly to neuroblastoma research. There is a link to where you can send letters to your congressmen, senators, and the presidential candidates to also help ask for funding and raise awareness.

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Thursday, October 14, 2004 6:09 PM CDT

Unfortunately, we are back in the hospital again:( Kendall had his MIBG scan this morning, and we were hesitant because he had a bit of a cold and needed anesthesia for a good study. His cold has been getting worse since Monday. Well, after anesthesia, his breathing was a bit labored and his temperature spiked up. It looked similar to the bout of bronchiolitis he had from a previous cold, but just in case they decided to keep him for IV antibiotics and fluids (he was a tad dehydrated too). He was feeling a bit better by the evening and sleeping comfortably, so we may go home tomorrow if the chest xray is clear and he continues to improve as expected.

I should have the official results of the scan next week, but unofficially, the tumor does look significantly smaller again, so hopefully the surgery won't be too bad. The surgeon is out this week, but will review the films with the radiologists on Monday or Tuesday and let me know what he thinks will be involved.

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Friday, October 8, 2004 9:03 PM CDT

Kendall is scheduled for scan's next week, and so far is feeling pretty good. His blood work on Wednesday was pretty good, and he's currently feeling pretty good and full of energy. He is enjoying the preschool (when given the chance) and Zach is loving having his brother around again and we are trying to make the most of this time together. I'll be posting new pictures shortly.

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Sunday, October 3, 2004 10:02 PM CDT

A detaied history of what brought us to this point:
Kendall was the smaller of my twins (only 3 lbs 6 oz at birth), but was relative healthy until this year. He did have some problems with recurrent inguinal hernias, that required four operations before he was a year old, but was otherwise a happy, healthy, bright and beautiful little boy. In April, we noticed he was a bit thin, but he had a couple of nasty viruses and had become a bit of a picky eater -- we figured it was a phase. Then the boys caught a nasty cold with a 104.5 fever for Kendall. The cold got better over the next few days, but the fever seemed to linger around 100.5-101.5, coming and going, which prompted another call to the pediatrician. And he was reluctant to play, and seemed a bit tired and pale. Based on his history of ear infections following colds, he prescribed the usual antibiotics. When the fever still lingered after 3 days on antibiotics, he brought him in for blood work and urinalysis. The blood showed a high SED rate and anemia, at which point our peditrician sent us to an infectious disease specialist at StonyBrook. Dr. Nachman ordered even more blood work, and was concerned by a high LDH level, which prompted more blood work and an abdominal CT. Thank GOD she made us do that CT. Kendall had begun to feel better during the week before the scan. His fevers were gone, he was still laying down a lot, but he was more eager to play, and even his color improved. I thought for sure it was just a very nasty virus. Instead, the CT showed a huge mass (somewhere between a large grapefruit and small cantelope)on the left adrenal. I was dumbfounded. Shocked. I knew there was something wrong, but I never in my wildest dreams could imagine how wrong it was. When the suspicion of neuroblastoma was confirmed by biposy the next day, my worst nightmare had come true.

Kendall's mass was large, but there were no metastases to the bones or elsewhere in the body on further imaging, and there was only a very small involvement of the bone marrow. However, due to the NMYC amplification and bone marrow involvement (even if small), he was staged as stage IV, the highest stage. The NMYC meant this was a very aggressive tumor, and we immediately began an aggressive course of chemotherapy at StonyBrook. Kendall took this surprizing well. A Broviac catheter was placed during biopsy so that medicines could be given and blood could be drawn without further needle sticks. Once he realized it didn't hurt, Kendall tolerated treatment quite well, and has become quite attached to the nurses and doctors. He has a good attitude with a bit of a stubborn streak. He lets them know when he doesn't like something, or if they aren't doing it right. He has had very few complications, mostly related to allergic reactions to some of the medications. He's had very mild side effects to most of the medications - just some nausea and tiredness sometimes. He's needed a lot of blood transfusions (about 10 so far), but hasn't needed platelets yet.

Kendall is on a protocol called COG 9340. Scans after two rounds of chemo showed significant shrinkage of the tumor. He's finished his sixth round and is due for more scans next week (October 11th and 14th). If all goes well, surgery is planned for October 22nd. This will be followed by two rounds of very high dose chemo with stem cell transplants and radiation therapy. It is a difficult course we are set on but Kendall was always a fighter. He has shown such strenght and determination for one so small, that I just know he will get through all this with God's help.

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Monday, September 13, 2004 4:37 PM CDT

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