History

Monday, April 11, 2011 10:44 PM CDT

It has been four years now since I last saw my beautiful little boy. Four years. It is almost impossible to grasp the passing of time. For me, it sometimes feels like four minutes, and other times seems like 400 years. Time seems to not have a whole lot of meaning anymore.

This time of year is so hard for us. But over time we have learned to deal with it. I am mostly empty and numb a lot of the time, but the grief still hits me like a ton of bricks...sometimes at the most unexpected moments. Neil stayed home today. He said he didn't want to lose his job when some "jackwagon" (a new favorite term of his!) comes bugging him about some nonsense or other. He gets too short-tempered on days like this to deal with people. He prefers to be alone. I should have stayed home too. My coworkers don't know of any significance to the day, because I choose not to share that with them (it is easier for me that way). I was able to stay in the office focusing on billing and whatnot, but I have to say, I was not my usual charming self by a long shot.

Zach went to school and seemed to have an OK day. He came home and did his homework right away, and got ready for karate class as soon as I got in, without argument. He doesn't usually go on Mondays, but I sent him today because he has plans with my mom and nephew tomorrow. He is doing great, and recently got his purple stripe. He has one more stripe of purple before brown. While Zach was at his class, I went to my new gym across the street, and did about 25 minutes on the treadmill, then took half of a conditioning and strength class. This was a new class for me, and I am glad I was only doing half of it! We did some spinning, jumps over little hurdles, lunges, squats, double medicine ball sit ups and more squats. I was soaked heading back to Zach's class. That is good for though. I like this school for the kickboxing classes and cross-training. I also still take the occaisional yoga class. I should weigh about 85lbs by now, but I still eat way too much! But this is a new start for me... hopefully I can keep it up for a while. The exercise is good therapy for me. There is nothing better than hitting and kicking a punching bag for releasing pent up anger and sadness. Nothing.

I'm going to change the photos a bit. It makes me sad to do so, because while I have tons of photos, there are never any new ones of Kendall, and never will be. But I try not to dwell on such things. I do want to change it. I don't even know why I keep the sight up. I don't write often anymore. Maybe it is the same reason I keep Kendall's Webkinz page going, or why I keep getting my old blue van fixed rather than look into getting a new one. I just am not ready to stop.

I was reading a book of a collection of letters to bereaved parents (I hate that term "bereaved", but I don't know of a better one). I found a few passages that really seemed to express the way I feel. The first was written by a woman named Sandy who's daughter died at age 13 of cancer:

"It is a hole, a vacantness. A scary hollow shell that I find myself in. Death. The robber. The thief of certainty. The stealer of dreams. My mind holds a thousand facts, yet there is no answer. My child died, and, in many ways, so have I. The Me I knew has vanished and in its place stands a hollow mold that must be re-filled."

At unusual times, in unexpected places: the supermarket, the ball game, on the way home from work, my eyes sting and my throat gets tight. And then I know that all I want is you." - Dorothy Ferguson from Little Footprints.

That's all I have in me today. Maybe one day I will be filled up again, but right now, I feel pretty empty. But not as bad as in that first year. There are days I am just going through the motions again, but mostly I just keep moving and try to turn my attentions outside myself. Sometime I even succeed.

Thank you for all those who remembered Kendall with us today. I still get beautiful cards from Stony Brook Hospital, signed by many of the staff I remember. It is very touching to me. Many of my friends and family email, text or send cards, and a few called and left messages. I got them all, even though I don't reply today (I will send emails tomorrow). It is very kind, and I do consider myself rather lucky to have so much support. I continue to get through the days trying to honor Kendall's memory.

I'll post the links to the Sunrise Daycamp tomorrow. We will be doing their walk again. It is such a fun event, that I hope anyone who is nearby will come join us. We have a blast. But I'm tired now, and I will add to the post tomorrow.

Love to all,

Aimee

Wednesday, June 2, 2010 10:32 AM CDT

May has been a busy month as usual for us. First of all, it was Zachary and Kendall's birthday, always a bitter sweet event for us. Zachary celebrated in style and excessively as usual. We were trilled to have my brother and his boys, and some new friends of theirs come to visit. We had a nice day today. We celebrated Mother's Day and my mom's birthday as well. Zachary had a party at UMAC - his martial arts school. It was a lot of fun. Zachary is doing well there and will be testing for his Purple belt next week. He also started baseball, and is happy to be back on the "Mets" with his good friend Domenic. It's been a bit of a tough year for the league as they are combining with another one, and the schedules have been challenging. But, so far only one game was rained out (yesterday!) and only one was postponed. We are hoping to get some more practice in soon. Zachary is really doing a lot better at baseball, but needs to work on his fielding a bit more.

This Sunday, June 6th, is the Annual Walk to Make the SunRise at Sunrise DayCamp. Zachary and I will be walking, but in honor of his Birthday, we are letting Neil sleep late this year. I have joined team "Heel 2 Heal", and encourage all of you who are in the area to sign up and join us. It is a FUN day, with lots of activities for the kids. The walk is fairly easy, though you can choose the "Challenge" walk (up and over the hills) if you want. As usual, Zach and I will be doing the challenge walk. But don't let that discourage you. They have bounce houses and pony rides for the kids, and a rock wall, and usually have a DJ too. It is like a big party. You can register on their website. Or you can feel free to donate on Zachary's Page. You will notice some photos of Zachary above at one of their events. We are still invited to attend the camp and their events, and I am forever grateful to them for that. Zachary won't be camping this year, but we do attend some of their functions, and the camp holds a very special place in our hearts.

The other day I was asked on very short notice if I would speak at a local middle school, Sequoia Middle School to be exact, about Alex's Lemonade Stand. I immediately changed my work schedule, and agreed to do it. ALSF is one of my other favorite organizations, as they raise money specifically for pediatric cancer research. Also, Alex's family is just one of the nicest I have ever met. They truly turned a horrible tragedy into a wonderful tribute to their beautiful little girl. I actually had to say the speech twice, as the school had half the kids in the auditorium and the other half were watching the skits and performances by other students and teachers for their "Rennaisance Day" event. Pretty cool school I must say. They really put on a beautiful show. In any case, their motivational speaker had to cancel, and they were planning some Lemonade stands in June, so one of the teachers contacted ALSF to ask if they had a speaker they could send. I have no idea why they thought of me, but go figure I got a call and said I'd do it. I then find out the teacher was the mom of beautiful Alexa!!! She was one of the children we honored in our St. Baldrick's events, and she is doing well right and still in remission. They tell me the day before, that they were hoping I could speak for about 45 minutes or so.... yikes!!! Luckily I am notoriously long-winded. I threw together a slide show of my boys, which you can see at the top of this page (sadly, it wouldn't run on their system due to website blocking, but I did have some of the photos saved to disc so I just had them load those... even though they were out of order and not as smoothly run). I also played a short montage from a St. Baldrick's even in Alexa's honor, set to a song called "She Will Braid her Hair" (or something like that). It was beautiful and very touching. I don't have permission to link to it here, so you will have to trust me on that. I ended up with some footage from one of Alex's Lemonade Stand videos I happened to have that was the opening of one of their phone bank marathons from a few years ago. It told a very touching story. I know my son and our stand is featured somewhere on those videos, but I only wanted to show the beginning, which had a very positive and upbeat kind of feel to it. It gets pretty deep and teary at points.

The first group of kids, the older ones, were fairly bored I think... though they listened politely and applauded at the appropriate times. One of them, as I was leaving, took a moment to thank me and smiled warmly, so I thought that was pretty good. The second group was the younger kids, and they were much more lively. I had some minor technical difficulties with the projector, but that was OK. They asked me a lot of good questions afterwards, and I could tell that they were really listening and curious. So I consider that a huge success.

The speech is long, and I don't know if it will post here, but I am going to give it a try. If not, I will split this entry and put it in my journal history so you can see it by that way. Not for nothing, but on such short notice, I thought it wasn't bad. I wish I knew that the theme of the day was "community service", because I may have changed it a bit and added more about how much helping others makes you feel better about yourself. I did adlib quite a bit of this, and some of this theme came out in my answers to their questions, but overall, it was a very positive experience for me.

I will be attending an Alex's Lemonade Stand event in honor of Kendall, Drew and another little boy named Bryan, on Friday, June 11 in West Islip. This is my friend Melissa's first stand. Her son Drew was a good friend to Zachary and Kendall from the Morgan Center. He died about a year after Kendall. If you are in the area, come down and have some nice icy cold lemonade with us. If not, you can send a donation in Kendall's honor on their website: Andrew, Logan, Sarah and Benjamin's Lemonade Stand (Logan was Drew's brother, and Benjamin is his new little brother, born just four months ago! Sarah is their adorable little cousin.... this is sure to be an event FULL of cuteness!).

****************
Speech for Sequoia Middle School

My name is Aimee Jackson, and I was very blessed to be a mother of twins, Kendall and Zachary. Zachary is a second currently grader at New Lane Elementary school. Sadly, however, Kendall died from neuroblastoma, a type of pediatric cancer, just before their fifth birthday. He battled the disease for close to three years, and during that time, I got to know some of the most amazing young people in the world. I am here today to tell you a little about them.

First of all, there are many different types of pediatric cancer, each with its own treatment and prognosis. Each year in the United States, there are about 12,400 children 19 and younger diagnosed with cancer. That’s about 36 children each day, or just a bit larger than the average classroom. Childhood cancer is the leading cause of death by disease in children under the age of 15. It occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.

Now, I think we can all agree, that children should not get cancer. Really, no one should have to suffer from this horrible disease, but particularly for children and their families, it is just unfair. Many of these kids never really get a chance to be a child, let alone to grow up. Of those who do survive, many face daily challenges and continuing health problems related to the treatment or to the disease itself.

You would think that our government, or the drug companies or someone would be putting all their resources into finding a cure, but sadly, that is not the case. Federal funding for pediatric cancer is comparatively low. For every dollar they spend on breast cancer, only about 30 cents is spent on pediatric cancers. The truth is, that compared to many of the adult cancers, pediatric cancer is fortunately rare. But that doesn’t help the over 12,500 children who will be diagnosed this year. So it is through private organizations, like Alex’s Lemonade Stand Foundation, that much of the research gets funded. And it makes a difference. Because children are still growing, and because the cancer is usually found at a late stage by the time it is detected in a child, pediatric cancers are often more aggressive than many of the adult cancers. Also, children’s bodies often react differently to the chemotherapy and radiotherapy agents used. There are very few “standard” treatments in pediatric cancer, something that I found out early on in our journey. That means, in order to get any treatment for their condition, over 70 percent of children with cancer participate in clinical trials. In comparison, only about 3 percent of adults participate in clinical trials. These research trials have made some great advances over the years. Since the 1950s, research has improved the survival rates for childhood cancer from less than 10% to over 77% overall. Death rates for most types of childhood cancer have declined dramatically since the 1970s. The principal reason for this is the progress made in treating leukemia, especially ALL, which accounts for about one third of all pediatric cancer cases. However, for many of the rarer types of cancer, such as the kind my son had, the survival rate remains very low. Newer treatments that are less toxic and more effective need to be sought out, and it is only through research grants that this happens. So every dollar that you can raise to help fund pediatric cancer research, makes a difference.

As I said, children should not get cancer, but the sad fact is, they do. Life is not always fair. There is a good chance that many of you know a child with cancer personally, or will get to know one at some point in your lives. I have met dozens of them, and have come to know many more through their webpages and online groups. I can tell you, they all have one thing in common – their amazing love of life. Children who know they have a disease that can kill them, do not take a single moment of their lives for granted. More than anything, they want the exact same things you do. They want to be “normal”, whatever that is. They want to go to school, and play with their friends, and join a sports team or go to amusement parks and just have fun with their families. So when they are able to, that is EXACTLY what they do, to the best of their abilities at the time. You rarely hear of these children complain that they have to go to school, they complain when they CAN’T go to school. They have a strength and a fierce determination that is inspirational .

We were lucky to live here on Long Island, where there were many resources available to us. Even though his life was short, Kendall was full of life. I brought this slide show of my children, so that you can see how very much my son was just like other kids his age. He loved to dance and make up silly songs. He loved to go to Chuck E Cheese, when we were able. Places like that, and Sports Plus, and especially the ball pits were dangerous to him, because a mild infection that may make a healthy child a little sick, could be devastating for a child with cancer. But we were determined to give him as normal a life as possible, so when his counts allowed, we went everywhere. Also among these slides you will Zachary’s first lemonade stand, as well as a stand that was held in Kendall’s memory in New Jersey by a lovely family who were friends of my brother. Now, I never met the Curley family, and they never met Kendall, but they raised over $3000 in his honor, which just amazes me to no end. There have been many others who have honored my family and Kendall’s memory by raising money for pediatric cancer research. This really means a lot to us. Many of these people never met us personally, but were somehow touched by my son’s story.

Through our treatment, we have met many families who were in the same situation as us. They all had different ways to cope with the adversities that came their way, but the common thread was, they all wanted to find a cure. I have been so touched by these children, that I cannot ever get them out of my mind and my heart. Alexandra Scott was one of these children.

I never had the honor of meeting Alex personally, but I got to know her through her family, and her organization. She was diagnosed with neuroblastoma, the same type of cancer my son had, when she was only one. Imagine if you can, this little girl, with beautiful blue eyes and sweet smile, who never remembered a time in her life that she wasn’t sick. Her family moved to be close to the hospital where they had innovative treatments that they hoped would cure her, Children’s Hospital of Philadelphia. My son was also treated there once he relapsed and the local doctors didn’t have any treatments to offer us. Just after her fourth birthday, while she was in the hospital for an extended time recovering from a stem cell transplant, Alex told her parents that she wanted to hold a lemonade stand so that she could give the money to her doctors so they could find a cure for cancer. Everyone thought it was “cute”. They said sure, figuring she’d raise a few dollars maybe. But word got out and people were touched by her story, and the fact that she was not asking for money for herself, but rather for ALL children with cancer, no matter which type. Because even at four years old, Alex understood, that children should not get cancer. The fact that a sick child was trying to help other sick children just caught on, and that first stand, raised over $2000, which was promptly donated to her hospital. Her family was amazed, and they decided to hold this as an annual event. Once the national media got a hold of the story and more people heard about it, other children decided to hold lemonade stands too. Jay and Liz Scott, Alex’s parents, began to realize the power of these children and their simple idea, to sell lemonade, and they began a foundation to manage the funds and distribute it to various researchers at hospitals all over the country. Even though they had a lot on their plates managing Alex’s treatment and care, as well as raising her three brothers, they kept going and helped her reach her dream of raising 1 million dollars for pediatric cancer, just after her eighth birthday. She died knowing she had reached her goal, that her dream was fulfilled, and that she left a legacy that would live on and continue to grow in her name. To date, they have funded over 125 grants at 50 different institutions across the country. They also use some of the money for nurse’s grants and to fund support positions, which improve the quality of life and care that these children receive. I can tell you personally, that when it came to day-to-day care, the nurses were the most important people in our lives. They did everything for us, and became like members of our family. They shared our joy and sorrows, our laughter and tears. I have remained in contact with many of them over the years, and their support has been invaluable to me. One of the many things I like about Alex’s Lemonade Stand, is their recognition of the role that nurses play in cancer treatment, and their continued support of nursing grants to further that role.

More recently, Alex Lemonade Stand Foundation started a travel fund to help families who need to travel for treatment. Because of the nature of the clinical trial system, all trials are not always available at all hospitals. Families often have to travel to other parts of the country, or even to other parts of the world, for treatment. The financial impact of cancer treatment on a family can be devastating. Usually, at least one parent cannot work, because they the need to care for their child. Often, due to treatment, side effects from treatment, or the disease condition itself, children with cancer cannot go to school or daycare, or other programs on any consistent basis. Now we, were again fortunate, that we live here on Long Island, where they have a The Morgan Center, a nursery school for children with cancer, and Sunrise DayCamp, which is also for children with cancer. My boys attended both, and they helped to provide us with a much more normal and stable life than we would otherwise have had. I was also lucky to have family members living nearby who were willing and able to help us out. Children with cancer are often in the hospital for weeks or even months at a time, and at least one family member needs to be there for them most of the time. Maybe some of the older children would be OK with staying in the hospital alone, but for young ones like my son, a parent or relative needs to stay with them. On top of that, some of the treatment and other supportive care needs may not be covered by insurance, and they need to find funds to help pay for that as well. So this travel fund is a great asset to these families, allowing them to access treatments that would otherwise be unavailable to them.

So what can you do. It is a little overwhelming sometimes when you look at how much is needed, and think, “But how can I help, I’m just a kid”. Well, Alex was just a kid, and she raised a million dollars. My son Zachary was just a kid, and he raised over $1100 at his first lemonade stand. Most of that was made online, by sending out emails to our friends and families and asking them to pass the word on to others. When you register your site, you get a donation page that you can customize and then you can also send those links out to your friends and family, and ask them to pass them on to people they know. Later, Zachary and I also did a St. Baldrick’s event where we BOTH shaved our heads. We made raised over $5000. St. Baldrick’s is another organization that raises money specifically for pediatric cancer research. So think of it, I’m told there are about 1000 kids in this school. If each of you just managed to raise lets say $25.00, combined that would be 25,000. What if you each raise 50, or 100, or 1000. Can you see how that can add up! Now add that to the other schools around the country, and individual who will be hosting stands during the “Lemonade Days” or anytime during the year, and you can see how, if we all work together, a LOT can be accomplished.

I have a few tips for hosting your own stand. First of all, once you have the date and place worked out, advertise your stand! You can make flyers or banners and hang them around the area. This doesn’t have to be a professional job, I think some of the best signs and banners are the ones you make yourselves. Don’t set a price for your lemonade. I found that if you just tell people to give what they can, most of them will give you one or two dollars, but quite a few will give more, maybe even 10’s or 20’s. Have some information on the organization posted in case people have questions. I kept a little folder of fact sheets nearby, and it had the website on the bottom so people could find out more at home. You can be as creative as you want. Draw pictures of lemons or of people drinking lemonade, and hang them around your stand. You might also be able to sell some cookies or brownies to go along with the lemonade. Use your own creativity and talents. You’d be surprised at how much you can accomplish if put your mind to it. Each and every one of you, has that same power that the children I have been telling you about have. Alex wasn’t able to raise so much money because she had cancer…. Having cancer motivated Alex to try to raise the money, and she found if she just set a goal and worked towards it, and got other people involved, that she was able to achieve what many others only dream about.

Let me end with this quote from John Quincy Adams, our sixth president:

If your actions inspire others to dream more,
learn more, do more and become more,
you are a leader.

Alex Scott, certainly was a leader and a hero, even though she was so very young. I hope she inspires you, as much as she has inspired me.

Thank you

Wednesday, April 14, 2010 8:23 PM CDT

On Sunday, it was three years since Kendall died. I am sorry I haven't updated the page sooner. I wanted to, but just couldn't seem to this year. I haven't posted an update since last July. I have tons of photos that have to be uploaded to our photobucket site, and haven't done that either. I don't even have a reason. I guess I don't feel the need to so much any more, but also, as time goes on, it gets harder. It is so hard to look through the photos, and see them just stop in April 2007. Our lives move on, but Kendall is forever four... not even 5. Every event and milestone Zachary hits without Kendall is painful, even when it is still joyful.

I don't spend a whole lot of time sitting around feeling sorry for myself, and don't dwell much on the negative. That serves no purpose. I don't want Zachary growing up miserable. I'm sure Kendall would not like that either.

So we keep very busy. Last week Zach and I went on an evening "Owl hunt" at Sweetbriar Nature Center. It was a great program. Zachary loved walking through the woods in the dark (no flashlights were allowed for most of it!). We did get a screech owl to respond to the recorded calls, but it didn't fly close. Unfortunately, some of the other kids in the program didn't know how to be quiet and still. But Zach still had fun, and they had captive owls that they took out and let the kids see up close (Zach wasn't about to get too close though!). Lovely place. This Sunday, which coincidentally would have been my dad's birthday, I think we will go to a tree planting program there. I love that place.

Zach started a new martial arts school, as the L.I. Ninjutsu center closed its Port Jeff branch. He loves UMAC and Shihan Andrew. The school is a lot like the other one was when Sensei Vinny was there. They let Zach keep his rank, and he picked up the new moves fast. He was recently promoted to green-stripe (would be similar to blue belt in other karate schools), and should get his purple belt soon I think. He has really become quiet good, and can do a large variety of kicks, punches, blocks, rolls, and wrestling techniques. He is getting good at the Bo staff, and is starting to learn the nunchucks. Zach is growing at a remarkable rate, and is very tall. He is also very flexible, and can just about do a full split! I'll try to post some of his videos from his school, as they are pretty cool to watch. I also take a class a the same time as him on the other side of the gym. The teacher, Michele, calls it a Martial Arts boot camp. It is very varied and intense, and has been great for me in many ways. We do cardio kick boxing, pilates, pliometrics (involves a lot of lunging and jumping), some yoga poses, and all sorts of sports drills, as well as actually learning boxing and kickboxing. Punching those bags and pads is a great outlet for pent up negative feelings. Sometimes one of the teachers puts mits on and/or uses pads so that we can practice punching and kicking with a moving target... lots of fun and a great workout. I've been watching the diet and dropping weight again, but more importantly, I feel better when I get a chance to hit something on a regular basis. I also took a great self-defense course with Shihan Andrew. I hope to have some video of that soon. It was very intense, and I feel more confident about my ability to defend myself if necessary (lets hope it is never necessary!).

In other news, Neil and I celebrated our 10th wedding anniversary on February 5th. We went to a quiet dinner at Tai Show, a Japanese restaurant nearby. Thanks to my friend Kathy C. for keeping Zachary for me that night. Neil has started bike riding, and is trying to be more active, though his work schedule is grueling an it's hard to find the time. Zachary just started baseball, and is again on the Mets with his good friend Dominick, same coach and many of the same players. He did really well in his first game, getting on base three times, batting in a run, and making an awesome slide home. He is learning to pitch now, as they will start the kids pitching halfway through the season. He has great balance, and is working on control. Zach has been having fun playing with his friends after school. His friend Louie come here 2-3 days a week, and stays until one of his parents come home (usually before 5:30, not so bad). The kids across the street usually stop by too. On Wednesdays you can add Nicky (my adorable nephew) into the mix. So we have a full house most days. It's good for Zachary though. He likes being around other kids.

Which reminds me, about three weeks ago, while we were all sitting quietly on the couch after dinner, watching a movie or something, Zachary suddenly asked if he could see Dr. Sue again. She was the therapist we saw last year to help him through his grief and stress at school. He hasn't asked to see her in close to a year, and it caught us a bit off guard. When I asked him why, he said he wanted her to help him with his bad dreams. He said he had been having some, and wanted her to make them stop. I was floored. He seemed to be sleeping fine. He has not woken us up in a long time, and hadn't complained of bad dreams or anything. I realized that as Easter came around, he was probably associating that with the time that Kendall died. So I made the appointment, and we went the other day. Dr. Sue said it was good that Zach was expressing himself well to us, and letting us know he was feeling stressed and needed help. He seemed fine in the session, though he did discuss one of his dreams in which he is walking near a busy street (he called it Main Street) and time stopped, then he started to cross and time started again and he was hit by a large truck and went flying through the air. Great. There were also others involving stickers on the wall coming to life. We'll have a few more sessions. Hopefully she can help him sleep better again. He has been doing well otherwise.

I wanted to take a minute to thank all those who called, sent cards or flowers, emailed, or called me on Sunday to let me know they were thinking of Kendall on the three-year anniversary of his death. I was touched that the staff at Stony Brook sent a card, signed by most of the nurses and doctors that we knew. Friends of Karen (one of the organizations that helped us during treatment) sent us a beautiful candle. My mom hosted a coffee hour at our church, complete with a cake and a photo. Pastor Hill even spoke about Kendall a bit during the announcements. Zachary was in the Easter play on Sunday, which was great that it fell right on that day. Marie and Nicky came to see it too. It was a really nice day out, and Zach spent most of it playing with his friends, though he was a bit subdued. Neil was feeling stressed (he got paged from work and missed the play), so he decided to buy a new TV for the office. We all went to BJ's and found one he likes, then he took Zachary home and I went to the Cemetery alone, which is my preference. Neil and I had gone last week, and Zach comes sometimes, but he didn't want to on that day and I don't push him. I brought some nice flowers and re-arranged everything. He still has a little dinosaur there, which has miraculously made it through the winter, and an angel. I hung a wind chime with a frog on it in the tree nearby too.

I don't remember if I had posted the photos of Sunrise before but I put them there now because it is getting time for their Walk to Make the SunRise again. It will be Sunday, June 6th this year (yes, Neil's birthday). Zach and I will be walking again, and I'll post a link to the website sometime soon. I am also sending out an email with info on a Flower Power fundraiser. I apologize for how late it is, as orders need to be placed by April 23rd. Katherine sent me this link months ago, and I just kept forgetting. Anyway, if you buy some flowers from them, they will send part of the proceeds to Sunrise. This camp was so amazing for all it did for my family. It was one of the few places my boys were completely happy and carefree, and gave Kendall a chance to be just a normal kid for awhile. This camp, along with the Morgan Center, and Alex's Lemonade, is one of my favorite charities. For those who don't make the flower order, I'll post info about the walk as soon as I sign up for it. We will be on team Heel to Heal again, if Katherine doesn't kick us off for our procrastination!

Anyone who lives nearby who would like to join us, please do. The camp grounds are beautiful, and they usually have some nice food and snacks. They also have a lot of fun activities after wards, including a rock wall and bouncers, and pony rides. It is a great event for a great cause.

Enough for now. I'll send out those emails. Love to all,

Aimee

********************************************
A dear friend of the family, Marie's beautiful mother Mariella passed away recently. This is a poem from funeral program. I really liked it, so I will share:

"She Is Gone"

You can shed tears that she is gone,
or you can smile that she lived.
You can close your eyes and pray that she will come back,
or you can open your eyes and see all that she has
left.

Your heart can be empty because you can't see her,
or you can be full of the love that you shared.
You can turn your back on tomorrow and live yesterday,
or you ca be happy for tomorrow because of yesterday.

You can remember her and only that she is gone,
or you can cherish her memory and let it live on.
You can cry and close your mind, be empty and turn your back,
or you can do what she would want: smile, open
your eyes, love and go on.

Saturday, July 11, 2009 10:42 PM CDT

Wow. I didn't realize how long it's been since I posted. I guess its just because we've been keeping busy, and I've been sleeping well (I usually post late at night when I can't sleep).

Anyway, to update, Zachary had a wonderful birthday party. He had several of his friends over to our house for pizza and jumping on his new Trampoline (Thanks Nonni and Poppi!). The trampoline has been a big hit, and he is very good about being careful. Some of his friends need multiple reminders though. But overall, its been great. Zachary was glad to finish school and get his summer started, though it has rained for most of the month of June. He did well in baseball, and developed a love of the sport. Tomorrow, we will be going to a Duck's game, courtesy of the wonderful folks at The Morgan Center. (Thanks Nancy, Rod, Trevor and Morgan!)

The Walk to Make the Sunrise was a huge success. Zachary raised over $750.00, with a lot of help from my mom and her wonderful community. I made a beautiful video of our day, but it seems to be too large to upload here. If I have time, I'll see if I can cut a clip of it for you.

Zachary started camp at the YMCA, and loves it, except that he is mad they still won't let him swim without a flotation device, or let him jump in the deep end. He is a pretty good swimmer, but he doesn't quite demonstrate the control they are looking for.

My quilt is coming along very nicely, but we are taking a break for the summer. I'll be working on it at home, and we will begin again in the fall.

Zachary has been working very hard, and is now able to ride his bicycle! It has been a long haul. Our neighbor took pity on me and helped get him started in her yard, which is mostly dirt and has a nice slope to it. He still needs some practice, but he's able to go to the park and ride with me now.

We had a fantastic time in Philadelphia at while at the Childhood Cancer Symposium hosted by Alex's Lemonade Stand Foundation. We just went to the bereavement sessions, and I went to one on getting involved, but it was a wonderful experience. I hope that the word gets out and it grows even bigger next year. Zachary had a great time at the children's program, where they had a lot of great entertainment, including a wonderful magician. I just got some photos from them, which I'll post at another time. While there, he had a great time playing with the Hanson children. I have "talked" online with their mom Ellen, but this was the first time I had a chance to meet them. She has six-year old triplets, one of which had neuroblastoma, and a 10 year old son, and she is a single mom. She travels all over with them. Very brave! They are great kids, and Zach made quick friends with them. Check out Sean's website.

Speaking of Alex's Lemonade, We will be hosting a Stand Tomorrow. I know it is short notice, but I decided to put one up at my mom's garage sale in East Meadow. For those who would like to donate, but cannot make it, please go to our Alex's Lemonade Fundraising Page. I hope to hold a more organized stand at Holtsville Park later in the year (September maybe).

I must get some sleep now, I'll have to be up early to get things set up. Happy Summer!

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"Oh that I had wings like a dove! for then would I flyaway, and be at rest."

-Bible (Old Testament)

Thursday, May 7, 2009 10:53 PM CDT

Happy Birthday Kendall.

Today was a rainy miserable mess. Kind of matched my mood. Due to the weather, I didn't get to the cemetery as I planned. I'll try tomorrow, but it may not be possible. Zachary's baseball game was rained out, which was just as well because he was anxious to get to Friendly's as we had promised. We had a nice dinner with my mom and Fritz, then a quick trip to Toys R Us. Unfortunately, due to the wait at the restaurant, and the late start (took Neil a while to get home in this weather), it was getting ready to close. He picked a small toy, and we promised to take him back tomorrow to get a game. I would have rather had a more definitive acknowledgment of Kendall today, but it is so hard to balance that with Zach's right to enjoy his birthday and have it celebrated. I am so torn. It reminds me of the way it was when the boys were first born. Zach came home a week later, and Kendall stayed in the NICU for about a month. Every day I spent going back and fourth between my mom's, where I was staying at the time, and the hospital to try to spend time with both children. No matter where I was, I was torn by the desire to be with the other child. But as bad as it was, it wasn't as bad as now. At least then I knew there was an end in site. I knew there was a good chance that soon we'd all be together. Now, I just want to be with Kendall, and can't. It just sucks sometimes. Neil and Zach miss him too. We talked a bit, but decided to focus on making a nice day for Zachary, as that is what Kendall would have wanted and expected. As you can see above, their birthday's were always well celebrated. Their third birthday included three different celebrations. There was two for their fourth too. The first and second were celebrated along with my mom's as it is on May 10th. But still they were well represented. Now, it is all I can do to try to organize a small backyard gathering for Zach. It will be later this month. We just have a couple of things to do to get ready.

Overall we've been OK I guess. Zachary likes baseball. I have some new photos I'll add later at some point. He looks like a pro! He's been making a lot of friends, and loves to play with the other kids in the neighborhood. He was thrilled to see some of the staff from Stony Brook last week. I took him to my quilting group there (we are making memory quilts.. I'm using some of Kendall's old clothing, and photos I printed out on transfer paper... it is going to be gorgeous!). The group is being run by some of the nurses at Stony Brook on their own time, just because they wanted to do something for those who lost children. It has been so great seeing Connie, Peggy, Rosemary, Jeanie, Trish, Paulette and even Sister Lynn. Then Zach and I ran into some of them, along with nurse Debbie and Dr. Prakash at a fundraising day at Tropical Smoothie Cafe. He was so thrilled to see them, and they him.

Anyway, it's been a tiring day. I'm going to try and sleep now. I want to leave you with the link to our fundraising pages for Sunrise Day Camp. This was the wonderful camp (the only Day Camp for children with cancer), who gave Kendall such a fantastic summer, and more. I have some photos I'll post at some later time of some of the artwork they did from there. I saw their things hanging up when we went to one of their events. These wonderful people still include Zachary at their camp events, and he loves to see some of his old friends. I know he worries about some of the children he met, and wonders if they are still OK. He has a lot of great memories from the camp, and still enjoys going there, though we won't have him go for the summer camp this year. It is just a little too much for him, and he enjoys the YMCA camp now. It is good for him to transition into more normal experiences. However, he will be walking in their fundraisers, and already has raised over $150.00! (Thanks to the wonderful people in my mom's community). I have the link here for those who want to donate online. I apologize that we have not personalized the page, but I cannot seem to get into it. I wrote to the webmaster, and hope to do it soon. I'll be sending out a bunch of emails soon. I know many of our friends and family are facing tough financial times right now. I don't want or expect anyone to give money that would be a burdon to them. You can help by spreading the email around and letting others know. You can also just join us for the day! It is a fantastic walk in a beautiful setting. There is a fun celebration afterwards too. Our group is Heel to Heal. Here's the link: Aimee's Page or Zachary's Page

Saturday, April 11, 2009 11:29 PM CDT

This was my Journal Entry from two years ago today:

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

There really still "is no why". It makes no sense. I lost my son, and my twins. I didn't even know I wanted them until I had them, and now, it isn't the same and never will be. I long for those days before, when we were all together and happy. Even when Kendall was sick, we had good times much of the time. We played tag at night in the "Tower" part of the hospital -- here the offices are... at night they are mostly closed. We used to run around, and sometimes pull Kendall in a wagon, or he would run holding his IV pole and we'd play hide and seek. We'd go outside and feed the pigeons and gulls, or walk around and look at the paintings in the halls. On our trips to Philly, we'd have a blast at the Ronald McDonald House, or one of the museums or parks. As long as his counts were OK, we were out and living life. Now, a huge part of me has died with him. We do have fun, and I do laugh and smile again, and I do enjoy life, but there is this huge part that is missing.... the hole that will never be filled. Even in our times of happiness, there is always that little voice "I wish Kendall was here".

I told myself I wouldn't do this. I am tempted to erase the whole entry and start over again. But maybe this is what is in me now, and so be it. We actually had a pretty good day today overall. Not the one we planned, but it is what it is.

Originally I was going to meet Josette and her girls for an egg hunt and activities at Tanger's in Deer Park. But it rained. I mean it poured! So we decided to skip it and I went to get Zach from my mom's so I could take him to buy new shoes. When I got there, my brother was there with his boys getting ready to go swimming, and one look at the big brown eyes, and I said "yes, go ahead Zach". So the three boys swam for a bit and I chatted with Nick, then he took his kids to their other grandparents, and Zach and I went to buy shoes. His had holes in them. I decided to go to Tanger's as I had some coupons and they were having sales. I got there around 12:30, and go figure, the Easter activities were still on! They had an indoor area. I wish I had called in the morning to find out. They were just ending though, so it was too late to have Josette come and meet me. We were one of the last kids to get the photo with the Bunny (see above), and Zach let them paint his face with a Spider Man pattern. He actually kept the paint on all day (unusual for him!). I had quite a time getting it off at night, even with cold cream and make up remover. Just as we were finished with the face painting, they started their last showing of the play Peter Rabbit. It was very funny and well done by a local theater troupe. We got to greet the actors after, and Zach and I left to get something to eat at Johnie Rockets. Zach liked that place, and he was very good for shopping and picking out shoes afterwards. He got sneakers and sandals for summer. I didn't find any for me, but I'll try again when I don't have him with me.

During this time were were in touch with Neil often. He was working on our bathroom (still not done!), and then decided to get his hair cut. So we went to get buy flowers and plants from our local volunteer fire department, and went to the cemetery in the rain. It was very muddy, but we managed to place the flowers, and this little candle with one of those battery-operated bulbs that is supposed to light for a long time. I did my best to shield it from the rain, and we will see what it looks like tomorrow. We also left some of the Easter Eggs that they gave Zach at Tanger's. I made sure there was something in each one, even if it was just a penny or a tattoo. We wrote notes to Kendall and placed them in the flowers on his grave. I also placed one at the gravesite of one of his friend's grandfathers, a few feet away. It was quite and peaceful there, especially as the weather was so bad.

We met up with Neil, then went to Blockbuster and Home Depot. We had a nice dinner of our favorite fried chicken - Poppeye's, played some games and watched boxing. Tomorrow we will go to church in the morning, then have some breakfast, and spend the day with my mom, Fritz, my brother Nick and nephews, Andrew and Alex. Zach will be very happy for this as he loves spending time with his cousins.

Thank you to everyone who was brave and thoughtful enough to write, email, and/or call today (or earlier in the week) and acknowledge our loss. It is still there, like that giant pink elephant in the middle of the room that everyone walks around and no one wants to talk about. Those who did speak to me today, found I can hold a perfectly normal and relatively pleasant conversation, even through this devastating time of loss. It is only in my writing that I tend towards the morbid and self-pitying. I rarely talk of such things.

In any case, a happy and blessed Easter to all of you, and a belated happy Passover to my Jewish readers. Kendall knew that Easter was a special and important day in our religion. It was a massive effort of will for him to leave the hospital on that Easter Sunday two years ago this week. He was in a lot of pain, and starting to have other problems as well, making it difficult to leave the hospital. He couldn't walk, and we had him in his stroller, with several tubes tucked away under his new clothes. I will never forget that happy peaceful look as he listened to our bell choir, or his voice as he said "That was beautiful mommy" when they were done. His eyes were closed for most of the service, but I could tell from the slight twitches of his face and body that he was listening intently. When he started feeling a bit crummy, he just said "Take me back to my room Mommy....the one at the hospital"... and off we went. We had several conversations on Heaven (general ones), and I am sure he was not afraid. He was the bravest child I ever met, and I miss him every day.

Peace to all,

Aimee

****************************************
"Our Lord has written the promise of the resurrection, not in books alone, but in every leaf in spring-time."
~Martin Luther

Wednesday, April 1, 2009 11:05 PM EDT

I'm going to leave the last entry up for now, but I wanted to make a quick update. Zach and I had a great time at the Crayola Factory and the DaVinci Museum with Josette and her adorable girls, Gia and Faith. Sadly, I do not have photos as I managed to loose my camera on the trip. I still hope it will be found, but it is getting unlikely. Luckily, I had just uploaded the photos and videos that were on it, so I only lost the ones we took on the trip. Josette took lots too, so I'll post them when I get them from her.

My other news is that I have taken up a new hobby.... quilting. No, this is not an April Fool's joke (well, not yet). Some of the lovely nurses at Stony Brook have graciously volunteered their time to teach quilting techniques to some of us who have lost our children. We will be working on a memory quilt project. I plan on using some of Kendall's clothes,and photos of the boys. Tonight was our first meeting, and it was great seeing all the nurses again. The really do have a fantastic team there.

Neil is still working on our bathroom, but progress is being made. I am hopeful that we will yet again be a two bathroom house by the end of the week.

Zach is doing well and looking forward to the Spring Break. He can't wait to see his cousins for Easter.

As Easter approaches, it is hard not to be too down. April 11th will mark two years without my beautiful little boy. The pain is still very great, even though I do manage to cope well most of the time. It is always there though. This is why I'm glad to be working on the quilt and keeping busy in general. Easter was a very important holiday for Kendall, and he showed his true spirit and faith just days before he passed. I will never forget how important it was for him to get to church that morning or how thrilled he was to be hunting Easter Eggs just like other kids. I will do my best to honor his memory and keep up these traditions that were so important to him.

Peace to all of you my friends. If anyone has any quilting supplies they want to unload, email me!

Aimee

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Saturday, March 21, 2009 8:45 PM CDT
Happy St. Baldrick's Day!

Yes, it is that time again. Spring brings warm weather, new flowers, and bald heads. I always said, when you're as cute as Kendall, you don't need any hair. He was gorgeous, with or without.

There are several St. Baldrick events going on, but I will not be shaving this year. My fundraiser for this year will be a walk for Sunrise in June. I also may put up a Lemonade Stand at our garage sale. My mom and I are working on one for May in East Meadow. More info later on that.

I digress though. Today, a wonderful young man shaved in honor of his sister, Molly, Kendall and Drew (who passed away last year). Billy Guarton wrote such a beautiful letter about why he is shaving his head again this year, that i had to share it with you. I'll post it here, but click on the link above to go to his St. Baldrick's page and donate on his head. It isn't too late.

It's Shaving Time!! I am going to shave my head for the second year in honor of Drew, Kendall and my sister, Molly, who is one of the lucky cancer survivors. Drew and Kendall were friends of our family who went to the same preschool as Molly. They were not as lucky as Molly and they are now Angels in Heaven. When we got the news about Drew and Kendall, we couldn't stop crying. It hurts my heart to see kids die because of this disease. This is why I am shaving my head...to help raise money for a cure for cancer because every dollar counts. I love my sister and I am one of the lucky ones that still has a sibling after cancer came into our lives. There are a lot of kids out there like Drew's and Kendall's brothers who are sad because they don't have their siblings with them now. When you lose someone in your family that is very important to you, you feel like a piece of your heart has been crushed. So please donate, not just for me but for all of the kids out there who don't want their sister or brother to die. Together, we can stop this disease and make a better future for all children. Thank you.

I also heard the news that a Miss America contestant has decided to shave her head in an event! We were so excited to hear that this beautiful young lady was going to use her local celebrity to help raise funds for much needed research. Here is a link to her St. Baldrick's site: Tara Wheeler.

I apologize for not updating sooner, but I have been very busy. First, we had Zachary's Shiai. He did AWESOME! He froze a bit when asked to demonstrate some of his take-downs, but he came in 3rd in the grappling, against some tough competition, and first place in padded weapon fighting! He never gave up or backed down, and he kept his cool when he lost, and was a good sport overall. We are very proud.

I had the great honor and pleasure of serving Jury Duty last week, and was picked for a very interesting case. I was the first juror picked, so I actually got to be the foreperson and announce the verdict! I always wanted to sit on a jury, and it was a very interesting experience. I got along well with the 7 other jurors I served with (two alternates), and we had the opportunity to speak with the judge afterwards, and the prosecutor, both of whom asked our honest opinions and answered some of our questions about how things were done. I know so many people moan about Jury Duty, and will do almost anything to get out of it, but our legal system is one of the things that makes this country great. Can you imagine living in a country like Saudi Arabia, where that poor 75 year old woman was sentenced to 40 lashes for talking to some men? Or other countries where there is no presumption of innocence? How can there be a jury of someones peers, if no one wants to serve. What if it was you up there being accused? Who would you want on your jury? Please note, I did not get paid or in anyway encouraged to speak out by the jury system. These are just my honest feelings. Yes, jury duty is a bit of an inconvenience. My job doesn't pay me for service, so it was a bit of a financial burden, but it is only once every 4-6 years or so. I think I can manage that. I did ask to be excused 6 years ago when my boys were young, and I was without any drama (just sent a copy of the birth certificates and a note, and didn't hear from them again until now). So I cannot complain. If you are picked for service, remember to bring some books, puzzles, and snacks, and make the best of it. We laughed and chatted the whole time and had a great group. Many court houses also allow phones, laptops and Blackberries, and a couple members of the panel were able to do quite a bit of work during the waiting times. They only took our phones away during deliberations (and you can't have on in the courtroom).

If there is one thing that Kendall taught me, it was to make the best of whatever challenges the day brings. You can choose to be miserable, or you can find a way to make even a boring hospital room fun. We spent most of the last two months of his life in the same room on 11 south of Stony Brook Hospital. Even as sick as he was, Kendall found his own fun, playing video games or on our laptop, hunting Easter Eggs, and making paintings or drawings. His spirit was always so strong, and I still feel it with me even now.

I wanted to share an amazing sign from Kendall that my mom had. She had gone to the cemetery, as we do fairly often still, and was feeling down and hoping for a sign. Later when she got home, she went in a box in her cabinate to look for some paperwork, when an envelop "flew out and fell right on the floor". When she opened it, it turned out to be a letter to Santa that she had written for Kendall while they were waiting at a doctor's appointment of some sort. She was amusing him by going through a magazine, where he cut out the picture of the dinosaur he wanted, and he asked her to write to Santa so he would be sure to get it for him. The letter was so sweet and clearly had his personally all through it. I was hoping to have a copy of it scanned in by now to share, but it will have to wait until next week when I can find time to show my mom how to use her scanner. Kendall signed the letter with his own drawings. These are officially precious treasures that must be preserved, so I must get over there to scan them in. I'll post them next week.

Kendall finds other ways to let me know his spirit stays near. I cannot explain it, but these things bring me much comfort. For St. Patrick's day, I went to his gravesite, and brought some green carnations, a glow-in-the dark cross, some Tootsie Rolls and Teddy Grahams. As Easter gets closer, I find my thoughts going back to those last days more and more. So I try to keep busy and keep distracted. Some days I almost succeed.

Anyway, be generous if you can with my newly bald friends. I'll try to update sooner.

************UPDATE****************
I went to donate to St. Baldrick's on Billy's head, and while I was there I decided to see where and when Miss Virginia would be donating. Her event is going to be on April 11, two years to the date of Kendall's death. I will be sending her a thank you letter, and a donation as well.

Monday, February 23, 2009 0:16 AM CST

Happy Belated Valentine's Day everyone.

Sorry I didn't write sooner, it is just very hard to find the time. As usual, it is about 1 a.m., and I am sleepless, therefore I write. The fact you haven't seen updates lately, shows I've mostly been sleeping pretty well:)

As the month draws on, a sense of sadness just seems to grip me. The top photos above were taken at the Philadelphia Ronald McDonald house. The first ones were from February 2006, our first trip there. We spent that Valentine's Day there, just me Zach, Kendall and my mom. I added some of those photos onto our Photobucket site. I am hoping to start filling in some more of the earlier ones soon. I just want to make sure I have them in as many forms as possible to try and preserve them. That first trip to Philly was so hopeful and wonderful. Kendall's initial response to treatment there was fantastic, and it bought us the best year of his life. Mostly he felt good that year. The next couple of photos of him in a pilot's uniform were from the following Valentine's day. It was just me and him that day, and the news was grim. They had no more treatment options for him there. It was so hard to face. We did try another treatment through Sloan Kettering, but that failed too. February 28, 2007 was the day Kendall entered Stony Brook for what was to be the last time. He died April 11, 2007. He only left that hospital once, for a few hours on Easter Sunday morning, to go to church with us. The amazing courage and strength it took him to go was something else. He didn't make it through the whole service, as the pain was too great. But he listened to the our Bell Choir (they use bells and chimes, very beautiful), and smiled so peacefully. Pastor Hill stopped and blessed him quickly before the service, and he looked happy to be there. He listed to most of the sermon, then let me know he needed to return to "his room", which meant the hospital. He always considered that room he died in "his"

Almost two years later, and it is so hard to believe he is gone. I sometimes still hear his voice, or feel his touch, or find little reminders of him. Even though we are coping well, and moving forward with our lives, I still miss him more than I can adequately explain.

Zachary had a great week off from school. He went to the YMCA camp on Monday, Tuesday and Thursday.... the nicest days of the week! He got to go outside and play on those days as it didn't rain and wasn't too cold. On Wednesday, I took Zachary, Nicholas, and Zach's friend Louie to Krazy Kidz... an indoor playground. It was packed, as it rained that day and the kids were off from school, but we had a great time. Both Zach and Louie noted that the spelled Krazy and Kidz wrong, and thought that was a hoot. Nicholas was cautious at first, but was soon scampering up and down the ramps, tunnels and slides. It is a nice place because the open design makes it fairly easy to keep an eye on your kids in the play structure. The won a ton of tickets on just the few tokens that came with their admission.. over 200! So all three had nice prizes to walk out with.

On Friday, I met Josette and her girls at Jump, another indoor playground... this one with giant inflatables. Zach had a blast there too. I hope to get some of the photos up soon. Only problem with Jump is the lack of food. We would have stayed longer if they had some sort of concession stand. We went to Applebee's instead and had a great meal though.

On Valentine's day, Kendall was definately with us! Zach got very lucky with one of the scratch-off tickets my mom sent him, and won $15! THEN, we went to church the next day, and found out that he also won a raffle basket we bought tickets for to help send our Youth Group to New Orleans for a retreat! I didn't really look at the basket much when we put the tickets in the bag, Zachary wanted it because there was a box of Pixos, and he had wanted those. When we got it home, we found it also had a fantastic art kit, with lots of paint, pastels, markers, and colored pencils, a scrapbooking kit, AND a new WEBKIN!!!!!

Zach is now the proud owner of a lovely Husky named Cody. I cannot even tell you how thrilled I was too! Our Webkinz account had run out, and I hadn't bought any more of them. We have 7 now (and one missing minikinz that I hope to locate shortly). I was planning on getting one soon, as it was something so important to Kendall and I wanted to maintain it as long as possible. We got the first Webkin, a polar bear named "Pola", from Alicia, one of the volunteers from Alex's Lemonade Stand, during Kendall's MIBG treatment. Alex's mom, Liz Scott, sent Alicia and another volunteer to visit us during this treatment, and she came herself when she was able to. She remembered how lonely and scary that treatment was. Due to the radiation levels, the child is in a specially lined room, with minimal staff contact and very minimal visitation. They brought food and very thoughtful gifts, including Kendall's beloved Pola. He very carefully named him, spelling the name out carefully to me to explain that it was PolA the PolaR bear. He gleefully went on his account each day, even when feeling his lowest. Even when we were in the hospital, he could use Neil's laptop to connect with the Webkinz. If he was feeling really bad, he would just tell me to do it, and have me hold the computer so he could watch. He was particularly fond of the Gem Hunt, and never missed a day. I remember the absolute joy when he got the very rarest of gems, the Webkinz diamond (a big W, that is the very top of the Webkin Crown of Wonder). I added Zachary's Webkinz to Kendall's account, because I didn't realize that there were some things you could only do once per account (not per pet). This caused some problems at first, but mostly Zachary deferred to Kendall. By this time, he was pretty sick most of the time and Zach sensed that he needed it more. I bought Zach his first Webkin, a Basset Hound he named Yoshi. All the other ones we have were gifts from very kind people. I will have to make sure to buy or obtain at least one per year to keep his account up. I also enjoy playing some of the games, as they are simple and repetitious. It is relaxing.

With that, I think I can sleep now. It is out of my system. As you can see, with February being such significant time for Kendall, and me letting the Webkin account expire, I have no doubt that Kendall had a hand in making sure Zachary won that basket. It brings me much peace, and Zachary must also think so. He also didn't even notice the Webkin when he put his tickets in that basket, it wasn't until we opened the whole thing we saw it. But he has been sleeping with Cody cuddled up to his chin each night, and whatever room he is in, he brings Cody there too. If anyone has a Webkinz account and wants to send mail to Zach, his screen name is Zacken. I don't let him go on chats, but the mail is OK.

Good night and sweet dreams.

Friday, January 16, 2009 0:37 AM CST

Happy New Year everyone.

I am glad the holidays are over. It is such a tough time. I remember our last New Year with Kendall, two years ago. It was such a hopeful time, and then soon after, the hope was just gone and our lives changed forever. I didn't want it to be 2009. I wanted it to go back to 2007, and for a cure to suddenly present itself. I know Zach felt the same.

Still, life goes on whether you want it to or not. There is nothing that can stop the passage of time. It gets easier to deal with the loss as time passes, but it does not get easy. The pain is still very much there, but my ability to cope with it and to smile through it gets better. I've been watching the History channel stories about the world ending in 2012 with fascination. It is actually something I look forward to with hope. I suspect that me and several other parents on my "Angel's" group (an online support group for people who have lost someone due to cancer... mostly those who have lost a child), will be very depressed come New Year's 2013 when the world continues to go on without our reuniting with our loved ones, and with no end in sight.

Hmmm....I probably shouldn't write journal updates at 2:00 a.m. when I can't sleep. I'm depressing myself again. Not only cannot I not form a proper sentence without run ons, but my thoughts are very dark at this hour. I fell asleep early on the couch watching a TV show with Neil and Zach, and now that I woke back up, I'm having a hard time getting back to sleep. This hasn't happened in a while, which is why I haven't been updating the journal as much! But I digress.

I put some new photos up. Some old ones too. I am missing a set of photos on my computer that I though Neil took off the old one. They were of the boys at the New York Botanical Gardens in Brooklyn at the train show. I love those pictures and hope to find them soon. I think I also have some of the boys taken at Fun 4 All that I'd like to share. That place has changed a lot since we first went. We loved it there. It is an indoor playground, and they had a huge ball pit, sand box, and all sorts of climbing structures..... exactly the worst thing for a kid with cancer! The germs at such a place could have killed him, but they didn't. We were very good about washing hands and using Purell. Also, we didn't go there during the aggressive treatment or when his counts were really compromised. I am glad that we took the risks that we did with Kendall, because there are so many things he didn't get a chance to do. I'm glad for the things he did get to enjoy, and ball pits were a favorite!

Zachary enjoyed seeing his cousins for New Year's day, and is looking forward to getting to see them this weekend too! We are meeting at Kathleen's house which is about half-way between Nick's and mine. Zach's Grandma Barbara is supposed to come too. It is so hard to find a day when we can all get together due to the distance and the differences in our schedule. Zachary is also looking forward to going to Domenic's house for his birthday this Saturday, so we will be very busy as usual.

Zachary had a great time at Jessica's birthday. You can see the Fun 4 All photos above. I wish I took more. I seem to be slacking on the photography lately. Josette would be very disappointed in me! I don't even know why. I just can't seem to get my camera to take good photos in bad lighting, which is usually the case around this time of year. Outdoors and in well lit areas, they come out gorgeous. I miss my old Cannon A5 camera! I am hoping to get a new camera this year, and maybe my photography will improve again. I actually get better photos from my phone lately! Speaking of which, I finally got a chip for my cell phone, so I'll get the photos off of it. Maybe this weekend.

In any case, the Tension Tamer tea and mindless writing seem to be doing the trick, and I will be trying to get back to sleep now. Please get out there and donate some blood or platelets. The supply is dangerously low right now.

Also, please send some prayers to gorgeous little Madisyn. She has difficult to treat disease and is starting a new treatment in Vermont.

Peace be with you all.

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

May all your troubles last as long as your New Year's resolutions. ~Joey Adams

Thursday, December 25, 2008 8:21 PM CST

Merry Christmas everyone. Especially to my Angel Kendall in Heaven.

I'm sorry I haven't written lately. I think this is the first year I didn't do a Thanksgiving message. It is not for lack of things to be thankful for. We have many. Especially my wonderful family and friends who have supported us so much over the years.

On Thanksgiving we actually went to New York City to see the Macy's Thanksgiving parade. Even Neil! We went to an event hosted by Alex's Lemonade Stand and the Gerber group. We were lucky to get tickets to the event at the last minute as someone canceled. We got to watch the parade from the Stone Rose Lounge, a beautiful restaurant overlooking Columbus Circle. They have a huge wall of windows, and they served a nice breakfast and mimosas. It was really cool, and we had a very unique view of the parade. However, one day I would like to brave the cold and crowds and see it from the ground. From up above, you couldn't hear it and that took away from the experience. Still, Zach was excited and it put us in a good mood for the holiday to do something special as a family. We went to my mom's for a delicious traditional Thanksgiving dinner after that, and Zach was thrilled to get to see his cousins from Jersey.

We didn't get to see the cousins for Christmas, but we had a beautiful Christmas Eve dinner, complete with lots of different seafood, at mom's last night. Some long time family friends came, and also Fritz's daughter and her new fiance! We are very excited for them, and looking forward to the wedding next year. Zach and Neil didn't have a great time, as they were both sick with colds. Go figure. Poor Zach hardly ate all day and barely left the couch... except when it came time to open presents, that perked him up a bit. Zachary got lots of great toys and things as we know many very generous people. It isn't even done yet as he still will get a few more gifts next week from our friends and his uncle.

Earlier in the day, I choose to donate platelets on Christmas Eve as a way to honor Kendall's memory. I remembered the second transplant he went through when we were released from the hospital unexpectedly on Christmas Eve, at least 5 days earlier than expected. He needed a lot of platelets to get him through that time, and I was so grateful that there were kind strangers who were willing to donate them around the holidays. Platelets only last about 5 days after being drawn, so the need to replenish the supply is constant. This time of year there is an even greater need and I am imploring anyone who is able to donate blood or platelets to get out there and do so. Platelet donation takes a bit longer, about two hours all in all, but I don't feel as tired and drained after. This time while donating, I watched their movie of the day (everyone gets an individual TV with all the channels, plus they have one channel they pipe in the movie of the day from a central player). Yesterday the movie was Mama Mia. I was reluctant at first because I didn't think I would like it, but it was actually a fun movie! Very lively and upbeat music too. Just what I needed. The techs and nurses at the blood bank know me well and it is like visiting friends. Also, very good coffee and cookies afterwards! So it is a rewarding experience, a chance to sit back and watch a good movie or favorite TV show, and you get to meet new friends. Platelet donors also earn points towards prizes if you need more encouragement. I usually take mine as gas gift cards. I then send them to another Long Island family that is being treated at CHOP and has to drive a lot. But you could keep your gifts, and they have lots of cool stuff you can earn points towards. So get out there and roll up those sleeves!

Ok, I'm off that high horse for now. I know it seems as if I am always asking for blood or money, but really, the blood is so critical.

Today was quiet. Zach was coughing and sneezing a lot, but seemed to feel a bit better.... not as tired and grouchy. He got lots of great presents from Santa, and enjoyed playing with some of them today. Then we went to the movies to see Bolt. Very funny! A really great movie, and it is in 3D too. We had a great time and I think this may be our new family tradition for Christmas day. We went to the store and Neil picked up a roast for dinner (he was just too sick to go to the store yesterday). However, the roast was going to take too long to cook, so we ordered Chinese food instead. This is a real treat for us, as I'm on a diet and seldom order out. I went to the cemetery briefly, and placed a wreath and Pointsetta on Kendall's grave. It makes me so sad that he is not with us. The grief gets pretty intense this time of year, but we manage to survive it. After next week, we should go back to our usual level of grief and hopefully heal a bit more. Overall, we are doing OK still.

In any case, I'm going to post some pictures from Thanksgiving. I don't think I have any from Christmas yet, other than Zack's Ninja class photo. I'll try to get to it next week.

A peaceful and healthy holiday to everyone!

Sunday, November 9, 2008 10:09 PM CST

I was going to leave my last journal entry up, but it was too long. You will have to look in history. For those who haven't read it, I wrote about another sign from Kendall at the end.

Today was Remembrance Sunday at our church. Always a sobering time. We honor and remember those who have died who have touched our lives, especially those within the last year. My list is so long, it would take up two whole services. But within the past year we had Drew and Krista, and their names were read. Kendall, my dad, my grandmother, and Neil's parents were also read. The other names were spoken quietly in my heart, and included those children I knew who have died from cancer, many of whom I haven't met, but who I grieve for none-the-less. You are all in my heart.

To commemorate them, we place white carnations in a special cross. This is the one from 2006 (I didn't have my camera with me this year!):

When the children enter the service from Sunday School (after the sharing of the peace), they also participate, by getting to put flowers on the cross. As usual, Zach was very somber and reflective as he carefully picked out a carnation, then slowly walked up, waiting his turn patiently, then placing it ever so carefully right in the middle of the cross. He then walked quietly to where we were sitting. However, after church he was his usual boisterous self, playing with his friend Sean for a few minutes, then we all enjoyed a nice breakfast with the Donovans at a local dinner (a real treat!).

Later in the evening, we actually went back to the church for a "pot luck" dinner in honor of Martin Luther's birthday. The theme was German foods of course! I actually baked (GASP!) some "German chocolate cookie bars".... not exactly traditional, but the first set were tasty. The second recipe I tried were OK too. We went as I heard rumors that my mom was going to make roast pork with sauerkraut and spaetzle.... something not to be missed! Also, I thought it would be a nice change. I remember the church "pot luck's" from when I was younger as fun and happy events. This was actually very nice. The food was all good, and Pastor Hill showed some funny video clips from U-Tube (Martin Luther doing the chicken dance, and the Reformation Polka were big hits!). After dinner, they were going to be showing the movie "Luther" which is the story about his life. We didn't stay for that, as there is no way Zach would sit through it. So we went home and watched "Invincible Shaolin" (any Venom fans out there?) on the Kung Fu HD channel instead. A real favorite of mine and Neil's. We are enjoying being able to share these wonderful old movies with Zach. He loved this one. The training scenes are some of the best and the funniest. Later we watched Kung Fu Panda again. Neil bought it yesterday. Another great movie. We got the set with the Secrets of the Furious Five. Very cool.

In any case, Tuesday is Veterans Day. Please keep all of our brave vets, past and present, in your prayers.

Wednesday, November 5, 2008 9:59 PM CST

I know it has been ages since I have updated. I apologize. Thank you to all those who emailed me to check up on me. We are doing OK. Just busy! I guess I don't need to write as much as I used to. I'll try to update now and then though.

I have added a slide show of our Disney trip. Zach an I had a great time, and it was good for Zach to see that we can do some of the same things we did before Kendall died. Of course, we missed him (and Neil!)and often wished he was with us, but we were still able to have fun as the photos show. I made a cool photo book from some of these too. Zach was able to bring it to school this week.

We had a great Halloween, lots of fun trick or treating, and multiple parties throughout October. I'll put some of those photos on later this week. I haven't taken them off the chip yet. Zach is doing well at school, and is a good reader. He is still struggling with handwriting, and today he came home saying his teacher was mean because she was trying to "make him do better than his best". Actually, I am sure he wasn't doing anywhere near his best. He is very stubborn and hates to write, so I'm guessing she was trying to get him to put even the slightest effort in. But overall, he likes school.

I'm still working at the same job, though I have a new boss now. Dr. Greenberg sold his practice, and I now work for Dr. Li. She is very nice, though not as organized as him! (Only military personnel are as organized as Dr. G!) But things are going well so far. My new hours are better for Zachary's schedule, so I'm not complaining much. Neil is doing pretty well too, though he is a very private person and prefers not to discuss it. Therefore, I seldom write about him.

Anyway, I did want to leave off with yet another amazing sign from Kendall. I've had a few here and there that are hard to write about, because it is difficult to explain if you weren't there or didn't experience it. But this one is pretty straight-forward. I was shopping at Walmart, looking for a few specific things I needed. I was kind of in a rush, so I was not going up every aisle, but rather was just going to the sections I needed. As I was passing the area where they have the photo albums and frames though, I stopped. I looked and about a quarter of the way up that aisle, a photo album caught my eye. I wasn't really looking for an album, but this one really grabbed my attention and I headed down to take a better look. It is just a plain album with some colorful stripes. There was a matching smaller one with a frame, and a larger one. I thought it would be good to use for some photos of Neil's dad and family that I've been meaning to sort. When I looked at the back of the book, I was stunned, and an odd, feeling came over me. There was a label with a flower on it saying: "The Kendall Kollection". Under that, was a flower and a note that the designer, Jackie Mcfee (www.jackiemcfee.com) was inspired by a little girl battling leukemia. Proceeds from the sale of this product were to benefit the Leukemia and Lymphoma Society! I just couldn't believe, out of all the photo albums in Walmart that I would suddenly pick out that one. Of course, I bought it and the matching frame and larger one too. You can see more about them at the website for Jackie (see above). It is a great feeling though to have these experiences. They bring me much peace.

Thank you to all who continue to follow our journey. I will be doing another fundraiser shortly, so check back soon. It is the best way for me to keep my spirits up through the holidays. I need to keep busy.

Wednesday, September 3, 2008 10:32 PM CDT

I want to send my love and prayers today to all those parents who are missing their angels today as the other children begin a new school year. I was considering listing some of them, but there are so many, I am bound to forget someone. Today is a tough day for all of us, and it is one of those things that really doesn't get any easier as time goes on. We just learn to cope better.

As for Zachary, he had a wonderful first day of school. We have been very fortunate to get Mrs. Banta, who many tell me is one of the best and nicest first grade teachers. His friend Sean is miraculously in his class, so he is very excited about that. I have been introducing him to the other kids at his bus stop all summer, so he is very happy to be getting on the bus with them.

I actually ended up with the day off from work today, so I went to the gym after putting him on the bus, then went to the cemetery to place flowers, a flag, and a pinwheel at Kendall's grave. I spent a bit of time there, though it wasn't as peaceful as usual. First of they are apparently adding to the burial structure across from his site, and there was a giant crane lifting new concrete boxes and stacking them in place. This was very noisy, and made me smile. I thought how much Kendall loved watching the cranes and other equipment outside the hospital. He gave them all names from Bob the builder, and was just as excited to see them as if he met a famous person. We often spent a good deal of our day on the bridge - a glass-enclosed tunnel that connected the pediatric floor to the administrative tower at Stony Brook. He'd just watch Lofty, and Scoop, and Rolly and Dizzy all day if he was allowed. It wasn't unusual for the nurses to have to hunt us down over there to give his next medicine or check on his lines. Anyway, back to the cemetery. If the equipment wasn't noisy enough by itself, there was also a lone bagpiper who played the whole time, marching back and fourth in front of a friend or relative's site, in full gear. He was clearly talented, and I recognized many songs. I have to say, it really lifted my spirits.... especially after he played America the Beautiful. This was a favorite of Kendall's and he called it the "For Song". ("Oh, beautiful, FOR spacious skies, FOR amber waves of grain..."). I smiled at that memory too, and headed home to clean up my house and mow the lawn.

I finished in time for a nice long shower and leisurely stroll to Zachary's bus stop where I chatted with the other parents waiting for their children. The bus came, and all the other kids got off the bus.... EXCEPT ZACHARY!!!! I climbed on the bus, he wasn't there. The other kids said they didn't see him get on. The bus drive told me he must have missed it, but he didn't seem too sure. Not one to panic, but obviously a bit upset, I called the school and walked back home to get my car. After several transfers, I finally get someone on at the office, who puts me on hold as the check the kids that are still out there. At this point, I started driving the bus route backwards as best as I could figure, to see if he got off at an earlier stop. There are only one or two stops before ours though. The secretary at the school says he isn't there, but asks who his teacher is and says she will ask her where he is, long time on hold again. Now I am really starting to panic a bit, as I turn around and start to head for the school in hopes that he is there somewhere. I was practically in tears by the time they got back on the phone to cheerfully inform me that Zachary was in Aftercare! Apparently, there was a clerical snafu, and the revised aftercare schedule I did two weeks ago never got to the school! I even had a copy of it clearly showing he was only supposed to go to aftercare on Mondays and Tuesdays. The error wasn't at the school, but they sure gave me quite a scare. I decided to calm down and call off the search party (I had the other moms and their kids keeping an eye out for him and checking up and down the block. I stopped at Starbucks and got a coffee and just sat for a while, then went to go get him.

On the bright side, I got to meet his lovely teacher who was very apologetic. She seems really nice, and she thanked me for the introductory letter explaining about Zachary and Kendall, and a little about some of his therapy. I sent it as there are some things likely to come up in conversation with him, and it is easier for the teachers to know their history. Just a little hint for those who may be in a similar situation.

Anyway, we went to his Ninja class afterwards, and had a nice dinner, then Zach played with Neil a bit and was out like a light by 9:00! So far, there is no homework other than a couple of projects that we have a few days to do. One of them is a bag that they decorate and put things that represent themselves in it (he needs to pick three things). They do sort of a show and tell with it on Friday. The other is a cool folder that they are to paste photos on of family or things that are to inspire their writing. The teacher will laminate the folders and their writing will go in there. Sounds kind of cool. I have LOTS of photos to choose from.

So that was our day. I have to get ready for tomorrow. Zachary needs to be up and at the breakfast table by 7 to get out of the house on time, so I have to be ready. I must now put together my lunch and clothes. Good night all.

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

Please let me know if you would like to come with me on the Shopping day for Krista Kares. I will be ordering my pass tomorrow and can just as easily get a couple of extra. Krista was the first person to ever call me Kendall's Mom, and I will never forget her.

SHOP FOR A CAUSE

Please Join Us

on Sept 20th

As Macy’s celebrates

A National Day of Support for

Local Non-profit Organizations

Purchasing a $5.00 exclusive shopping pass entitles you to save 10-20�R>
(see exclusions on your shopping pass)

This will be a day of special events, entertainment and a chance to win a $500.00 Macy’s shopping spree

“The Krista Kares Foundation”

will receive 100�n each shopping pass sold.

Please support our foundation so that we can help children fighting life threatening diseases and their siblings experience the things in life that all children would like to experience. You can help make their life a happy one. Thank you for Taking the time to help our foundation.

This is a National Event so if there is a Macy*s near you, you can be eligible for the discounts and prizes.

For tickets please send an email to:

licobra@aol.com

Or: Each pass is $5. Checks, made out to : "The Krista Kares Foundation", can be sent to: PO Box 618, Centereach, NY 11720.

***************************************
B. F. Skinner
Education is what survives when what has been learned has been forgotten.

Mark Twain
In the first place God made idiots; that was for practice; then he made school boards.

Saturday, August 30, 2008 1:41 PM CDT

It seems like it is longer and longer between updates lately. I guess I don't need it as much as I used to. Maybe that is a good thing.

Anyway, we are doing fine. Zachary had a fantastic time at the Jedi training, and loved the new Clone Wars movie. He is currently collecting the toys from McDonalds with much enthusiasm. Camp is done, and he missed the last day because he just didn't feel up to it for some reason. I am thinking it was just too overwhelming with missing Kendall there. He made the comment that he liked the YMCA camp better, and I think that was because there were only new good times there, no memories. Still, it was his choice to return to Sunrise, and he was very happy to see his old friends. I could tell he was relieved to see so many of them doing well. I will never be able to thank the wonderful people at that camp enough for all they do.

We had a fun Bounce and Splash weekend at White Post Farms (giant inflatable slides...some with water!). I'll get some photos up soon as I get them off my new phone. I'm going to buy a chip for it. We also went with Gia and Faith to Adventureland and that was just a blast. We stayed until the very end (11:30 pm!) and Zachary must have ridden the Ladybug coaster about a hundred times! He found he could ride without an adult, and paired up with a little 10-year-old boy, and the two of them just kept going on over and over. The girls and him also discovered how much they love the Rock and Roll ride. This thing goes around in a circle very fast, and up and down little hills, while the children are crushed into the parent against the wall of the car. Very painful and nauseating. We did this one like five or six times. Josette and I are definitely of questionable sanity. It wasn't so bad riding with Faith, but a few times I had both Zach and Gia with me.. that's about 120 lbs of child crushing me as we go in faster and faster circles. Owww! Still, we had a fun and I'm glad we went.

Yesterday I took Zachary to the Aquarium with Nicholas and Marie. It was an absolute blast! Nicky is so cute. He was so excited to see all these new and unusual fish! Zach was very brave, and actually fed and petted the sting rays this time. Nicholas was interested in them, but a little nervous. Zach even walked through the salt marsh, which has crabs and crabs in it. He wouldn't touch them though. Still, we had fun and maybe next year Zach will be brave enough to snorkle.

I wanted to let everyone know about a shopping event to raise money for Krista Kares. I will be going, and I hope everyone will help support Krista's family on their new venture. Here is their description as to what they are doing:

We are going to provide sick children and their siblings the opportunity to experience Krista by doing things that:
(1) they may be unable to do due to financial restrictions,
(2) they have always wanted to do but needed special attention/instruction which was unavailable
(3) they never even thought was a possibility of ever doing

Our network is STILL GROWING and we feel that kids need to experience "the impossible" because whenever Krista was told. " Oh, I don't think so." She would respond, "Oh YES think so!!"

SHOP FOR A CAUSE

Please Join Us

on Sept 20th

As Macy’s celebrates

A National Day of Support for

Local Non-profit Organizations

Purchasing a $5.00 exclusive shopping pass entitles you to save 10-20R>
(see exclusions on your shopping pass)

This will be a day of special events, entertainment and a chance to win a $500.00 Macy’s shopping spree

“The Krista Kares Foundation”

will receive 100n each shopping pass sold.

Please support our foundation so that we can help children fighting life threatening diseases and their siblings experience the things in life that all children would like to experience. You can help make their life a happy one. Thank you for Taking the time to help our foundation.

This is a National Event so if there is a Macy*s near you, you can be eligible for the discounts and prizes.

For tickets please send an email to:

licobra@aol.com

Or: Each pass is $5. Checks, made out to : "The Krista Kares Foundation", can be sent to: PO Box 618, Centereach, NY 11720.

Krista was just an amazing young girl and very dear to my heart.

I promise some photos soon. Right now I have to go.

Aimee

Friday, August 15, 2008 9:18 AM CDT

Sorry for the slowness of updates. My new boss just started two weeks ago, and it's been exhausting. Things are starting to settle down a bit though.

Zachary and I had a great time at the Duck's game. I posted some photos above. Thank you to Nancy and Rod of the Morgan Center for inviting us, and to the management of the Duck's themselves for the tickets and use of one of their boxes. Buddy Harrelson is a great supporter of the Morgan Center. For that fact, on his official card you will see him wearing a Morgan Center bracelet on his wrist! (it is red, yellow, green and blue). He wears it all the time. He is such a nice guy. Withing a few minutes of the game starting, a foul ball flew right into our box... right over the kid's heads and smashed into the leg of one of Gia's grandmother! I hear she had a huge bruise. Buddy stopped up towards the end of the game, after spending a few hours downstairs signing autographs, to sign her ball, and anything else the children wanted him to sign. (he signed Zachary's quacker!) The kids were literally hanging all over him, but he is so patient with them. Zachary had a lot of fun, though I don't think he watched much baseball! As usual, the food was great, and it was nice of them to include a wonderful salad for those of us watching our weight! You can see from the above horrible photo of me, that my hair is coming in nicely. It will soon need to be cut.

My mom took Zachary and some of the children from her development back to Booomer's to make up for the rain-out on Nicky's birthday. He had such a great time and has been having an awesome summer so far. He started back at Sunrise Day Camp for these last two weeks, and they have been great. He comes home filthy and exhausted, just like a six-year-old should! The weather has been kind of iffy, with lots of weird storms, but mostly it has been OK at least part of the days and he has been able to swim and play outside too.

Most of the above photos of Kendall were taken with my old cell phone, that finally has been replaced this week. I emailed all the photos from it to myself, and those are some of the ones I have. When I started to set up my new phone, I was a bit upset because I realized that there would be no photos of Kendall on it. I couldn't bear that, so I decided to email some of the photos back to my phone, and I was able to put them there. I will use them for wallpaper like before. I'm glad I figured out how to do this. It is such a little thing, but ANY time Kendall is eliminated from something it hurts.

My mom had a sign from Kendall a few weeks ago. She was at the cemetery and feeling very down. She said she asked Kendall to let her know she was OK and told him how much he was missed. Shortly after she left the cemetery, she saw a car stopped in front of her at a light and noticed the Florida plates. Then she saw the frame around the plate had the name Kendall on it! She said she instantly felt better. I haven't had as many signs lately, but I haven't actually asked for one either. Still, it seems every time I really need some comforting, something or someone just appears before me.

Zachary found the teddy bears I had dressed in the first Preemie outfits that Neil had brought for the boys when the boys were born. They were these adorable little baseball-themed outfits. I couldn't bear to throw or give them away, so I dressed the bears in them and put them on a shelf. Zachary remembered that the bears were named "Baby Leif" and "Baby Fred", and that prompted me to take a trip back though my CB journal. I wasn't sure of the second name, but I was sure of Leif (or, probably Leaf). When Kendall was first going through treatment, Zachary decided he wanted to change his name to Leif. I am not really sure why. Not to be outdone, Kendall wanted a new name too, so he picked Fred. Again, I have no idea why. The two of them would get all sorts of hysterical when someone asked their name and they would say Leif and Fred! This made for some raised eyebrows at the hospital, as the nurses would look at the charts, then look at me for clarification. They named their bears after themselves. I couldn't find a journal entry that described this, though I am pretty sure it is there somewhere. However, I did copy this one from another one of those wonderful, magical days in my former life when I had everything I never even knew I wanted:

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!

The school above was The Morgan Center. When we first started, Kendall had a lot of trouble going into the classrooms without me. The moms usually stay in a separate room, and we all formed a sort of loose support group. It is a little different from the typical pre-school where you just drop the kids off. Eventually, Kendall was able to enjoy the classes without me being right there. When I went back to Radiation Therapy more than two years later, the little frog was still in the fish tank, even though the fish were mostly different by then. I remember that Kendall had named the fish after characters in Thomas the Tank Engine. the big one he called Bullstrode, and he said he was "bad tempered", and the smallest was Percy, there was also an Emily, a Toby, Trevor, and a Mavis. I am sure there were others, but those were the names I remember. Those were such great days. Kendall was feeling well, and happy, and full of life and fun. I can't believe he is gone now. Some days, it seems like a horrible nightmare, and other days, I have to look at photos or read my old journals just to convince myself that I didn't just make it all up. It seems so unreal.

Therapy has been going well, thank you. I am actually coping pretty well most of the time. We even have fun sometimes. But no matter what, no matter how much fun, I'm still longing for those days when we were all together. Zachary feels it too. He often says, he wishes he was three again. Or he wishes Kendall was here still.

Tonight we are going to a special Star Wars training session at his Ninja class. He will be bringing two buddies: Louie and Dominic. Tomorrow they get to see the new Clone Wars movie. I know Zach is going to have a fantastic time.

And I know he will still wish Kendall was here to share it with him. Kendall loved Star Wars, and he would have been a great Jedi.

Friday, August 1, 2008 11:00 PM CDT

Four years ago today, Alexandra Scott, the young founder of Alex's Lemonade Stand, passed away after battling neuroblastoma for most of her eight years of life. Alex's story is one of determination, triumph, and compassion, and it is truly inspirational. I never had the honor of meeting her, but I have met some members of her family, and my heart goes out to them today. Their loss is great, but they have turned that pain into a foundation that more than honors her memory -- it has raised MILLIONS to help research pediatric cancer. So stop by their website (click the above links), and make a donation in honor of this bright little girl with the big ideas, who started a huge movement, with a very simple idea: "When life gives you lemons, make lemonade!"

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Also today, I am just heartbroken to hear of the passing of yet another beautiful and brave young warrior: Katie Krize. Katie had relapsed more than six years after her original treatment ended, and she has battled this disease fiercely for the last two years. She passed away at home with her loving family surrounding her. Please send them some love and support.

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We've had a busy week, and I'll write a bit about it later. I may even manage to get a new photo or two posted. We celebrated Nicholas's birthday last Sunday at Boomers, even though it POURED the whole time. Zach had a great time and really enjoyed climbing that rock wall! Today we spent with my other newphews in Jersey, mostly playing in the pool and enjoying the nice weather. This weekend we have another party tomorrow, and a Duck's game on Sunday, so we continue to keep busy and active. I'll update a bit later .... maybe Sunday night or Monday. I just got back and I'm too tired right now. But I wanted to make sure to let all those who still keep up with us about Katie and Alex..... two more beautiful souls who touched my heart.

Thursday, July 17, 2008 11:08 PM CDT

I'm sorry to say we have lost two more brave NB warriors. Gorgeous little Janie Kashino passed away yesterday. She was such a bright and beautiful little girl. Dustin Cobb has been fighting this disease since 2001. Please keep their devastated families in your prayers.

Also, please send some love and prayers to another beautiful young girl, Katie Krize. I'm sorry to say she has been sent home on hospice. Her treatment options have run out.

I get so sad to read about these children. I miss Kendall each and every single day. It is hard to explain the depth of the loss. I thought I'd share some old photos of happier days. I love that spaghetti one! I like to look at the pictures, but they are also very hard to see. Yesterday while I was shopping at Stop and Shop, a beautiful yellow and green bouquet caught my eye. I wasn't looking for flowers, but as I walked past I couldn't help but notice them. Upon closer inspection, I saw that it was a "Lemonade" bouquet!. A portion of the proceeds from the sale goes to Alex's Lemonade Stand. Of course, I bought one! I also bought a little frog on a stick to go in it, and I placed them at the cemetery.

Zachary has really been enjoying his summer so far. He loves the camp at the YMCA, and will finish that up tomorrow. Next week he will do the Drama Camp at our church again. Last week he got his green belt, after demonstrating all his skills for me, Neil, Mom, Fritz and Nicholas! Speaking of my nephew Nicky, he is turning two on Monday.

It is late and I am tired. I know there was more I wanted to say, but it is gone from my head now. Maybe I'll add to the update tomorrow.

Good night.

Friday, July 4, 2008 11:14 AM CDT

Happy Fourth everyone!

I cannot help but look back at my past Fourth of July's and be a bit sad. It was such a favorite of my boys. They LOVED fireworks, barbecues, and glowsticks. I posted a few photos from around the Fourth on the opening screens. Going through them reminds me of the tremendous loss and is difficult, but it is also healing (or so the therapist says). The top photo was taken on July 4, 2004 at Holtsville Ecology Center. The boys were supposed to be going to a parade with the rest of the Nassau County Mothers of Twins Club, but for some reason we couldn't make it, so I took them to their favorite park/mini zoo. The shirts they are wearing say "My First Friend, My Twin". I wish I knew where those shirts, and their little Fourth of July dolls were. I probably saved them somewhere, though I may have sold them to another Twin's Club member. You will note in the second photo that Kendall also has his ever-present cuddle frog clutched to his chest. That one I definitely have.

Anyway, we still do have fun and plan to enjoy the holiday. Looking back on Kendall's life reminds me that he lived life very much to the fullest, never taking a moment for granted or passing up an opportunity for fun, no matter what the circumstances. I will bring my little hero a flag and a glowstick to honor him on this day. I know he would like that.

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It is with deep sadness I have to report of the loss of yet another amazing NB warrior. Joe Daily. He fought neuroblastoma for EIGHTEEN years! That is NOT a typo. He had been through so much, and yet managed to live a very full life, and to become at teacher, his dream job. I've never met or spoken to him, but his mother has been a member of our online list for many years, and always a great source of knowledge and support. You can read his story in the local newspaper at the above link (click on his name), or copy and paste this link into your browser if it doesn't work: http://www.mlive.com/flintjournal/community/index.ssf/2008/06/a_teacher_and_inspiration_joe.html.

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We have all been doing pretty well lately all things considered. I've been hitting the gym hard, and finally back in a losing mode. Neil has been hitting the gym less hard, but he is sticking with it and not giving up. He remains smoke free, and I am so proud of him for this. Zachary, is loving his new camp so far. The tire him out to no end! His only complaint is they make him wear a bubble in the pool (a type of flotation device). After some more questioning, I find that everyone has to wear one in his group until they can demonstrate the required strokes with proficiency. This camp is at the Brookhaven YMCA. Later in the summer, I plan on sending him back to Sunrise again for a couple of weeks. He misses his old friends and counselers. Zachary will also spend a lot of time with his grandparents and his friends in their community. He has been doing great in his Ninja class (see the Tactical Ninja Training photos above!), and is going to be promoted to Green Belt next week!

As I was looking back over my photos, I found this one:

I looked at the date, and it was taken July 3, 2007. I was outside working on my flower bed, and crying over my loss of Kendall, wondering WHY, and asking God what I did wrong. "WHY!". That unanswerable question. When something compelled me to look up, and there I saw this question mark in the clouds. I took the photo a few seconds later, and it was already dissipating.... but when I first glanced up, it was a perfectly formed question mark with a dot underneath and everything. I re-read the journal entry from that day, and I will repost that part of it here:

"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. "

I'm glad I have this website and journal. It is a great source of comfort for me, and a compilation of Kendall's battle with cancer. I think I will print out the entries and keep them safe somewhere, just in case. I no longer ask why, as it is a useless question. Even if the Lord Jesus himself was to come down in person and try to explain to me why my sweet little boy had to get cancer and die, and why my other sweet little boy has to be without his twin, I wouldn't be able to accept the answer. What possible explanation would be acceptable and OK? The guilt I felt last year is mostly gone now, and only once in a while rears its ugly head. I push such thoughts out of my mind, because they just make me miserable. Kendall certainly didn't want anyone to be miserable, especially me.

So I don't ask why any more. Now I ask, what? What can I do today to make it better? What do I want to accomplish in the next few days or weeks or years. What kind of life do I want Zachary to have? What can I learn from all of our past experiences... the good and the bad?

I think maybe I'll save those questions for another day. Today I am just going to eat some burgers and watch the fireworks.

Wednesday, June 18, 2008 6:36 AM CDT

First of all, many thanks to the Curley Family for their wonderful lemonade stand in Kendall's honor. They raised over $2500 for Alex's Lemonade Stand, an organization started by a little four year old girl who died of the same kind of cancer Kendall had. The money goes to research and fellowship grants for all pediatric cancers. You can still donate for up to a year if you missed it. I have never met them, but they are friends of my brother Nick. I am just so touched by their kindness and generosity. They worked hard, and made beautiful banners which they said we could use for future stands.

I'm sorry I haven't updated sooner. I've been keeping busy and working out a lot, and I just don't have any energy for the computer. Especially during that heatwave... ouch! It would figure that our Walk to Make the Sun Rise was right at the start of that heatwave! Even so, they had a great turnout, and raised over $180,000 to date! (You can still give to this wonderful organization as well, click on the link above). Poor Neil, he was leary about walking to begin with! And Zachary has learned to read enough that he was able to pick out the challenge path sign, and that was the one he wanted. He more or less shamed us on to that one. They struggled up the one big hill (me and Gia walked it!), but otherwise, everyone made the walk....though slowly. Towards the end we took a golf cart for a short ride as they were trying to get everyone off the path. The walk was supposed to be about 45 minutes. It took us about an hour and a half. But we stopped for LOTS of water. Still, the camp was beautiful, and Zachary loved walking. I think I'll take him on some nature trails this summer.

School is almost out, and I'll post some photos from Zachary's moving up ceremony next week. It was really cute and touching, but, like every thing else for me now, it was so sad that there was only one child there. I could just picture how much Kendall would have loved it. I almost lost at the End of Year celebration the PTA held. I volunteered to help out with Zachary's class, and enjoyed watching them all sign bags with their names (each kid got a canvass bag with the names of all the other students in their class), make sand art, and dance to a really cool DJ. It was the dancing that got me. They were all songs Kendall LOVED. He loved group dancing songs like the Hokey Pokey, the Chicken Dance, and.. his favorite, the Cha Cha Slide. It reminded me of the parties we went to with The Morgan Center and A Mother's Kiss. Kendall lived for these moments. I hate to keep sounding like I'm miserable and complaining all the time, but it helps me to write my feelings out. Really, I do enjoy seeing Zachary have a good time, it is just that there is always this sadness there at the loss. I am sure Zachary feels it too. On the other hand, I am full of gratitude for the organizations that helped to make his life so much better and more full than we could ever have hoped to on our own. I am so glad he had the opportunity to go to the Morgan Center and experience their graduation ceremony. They had another one last week and I was sad not to be able to attend to see my friends children graduate the center. Unfortunately, I couldn't take the day off and my mom had commitments that she could not change.

In other news, Zachary had his first fishing trip for Fathers Day weekend! Neil and him went fishing on a charter boat with some of our friends. I don't have photos yet as I made them take a disposable camera and we haven't used it up yet. Zachary was so exited to catch two fish! However, there is no photo of him with fish, as he was too afraid of the fish to stand next to them..... even with the Mate holding them. All the fish were thrown back to swim another day as they were too small. Father's day was very subdued, as usual. Neil has lost both his father and his son in less than two years time. We do try, but it is hard to celebrate when you are mired in grief. We did some things around the house, and later went to have a barbecue with the Donovan family.

I just got an email from a fellow cancer warrior today that reminded me of how connected we all are. Her son Steven had shared a room with us several times at Stony Brook. Actually, they were our first roommates. She was at the cemetery visiting her father-in-laws grave on Father's Day, when she walked around a bit and came across Kendall's stone just a few rows away. I have no doubt Kendall was calling her somehow to try and bring her some comfort.

I had a sign from Kendall after the Sunrise Walk. We were leaving, walking to the car which was in the upper lot and Zachary stopped on a bench in the dugout. It was very hot up there, and there is no water that I can see anywhere near by. When I went to get Zach, I looked down and there was a little frog hopping around his feet! I caught it for a minute so he could see it and touch it, then we let it go. You expect to see them around water, but there is no water up where he was. He was a long way from the pool!

Sunday, June 1, 2008 10:59 PM CDT

With the Sunrise walk next week, (Sunday, June 8th) I thought I'd post some photos from Sunrise DayCamp. I don't have many of the boys while they were at the camp... as parents weren't there. I have a few of them walking up to camp or coming home, but they are all blurry from all the running. I wish I had put an effort into taking more. I have come to realize, that there are never too many pictures.

Anyway, we are looking forward to the walk. I don't know what happened with the raffles. I seem to have had a miscommunication with the team organizer. My fault. But if anyone wants to make a donation, you can do it online at: Neil's page, or just give us cash or check to bring to the event.

On Saturday, June 7th, friends of my brother Nick will be hosting an Alex's Lemonade Stand in Kendall's honor. I see that the Curley Family has done an awesome job so far. Their online site (click on the link) has already come pretty close to their goal. I am sure they will exceed it. Alex's Lemonade Stand is a wonderful organization with the proceeds going towards research grants for pediatric cancer. I have met some of Alex's family, and they have been so kind to me. They have really put together a great organization in honor of their very brave and very special little girl, who held her first lemonade stand to benefit pediatric cancer at only four years old.

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There is some exciting news on the pediatric cancer front. I haven't been very good at updating lately, but I wanted to post a link to a great article in the Philadelphia Inquirer spotlighting some promising research done by a phenonemal team lead by Dr. Maris (Kendall's oncologist at CHOP): Clue to Rare Cancer. This is the type of thing that those research dollars are funding, and I thought it would be nice to let those who have so kindly donated in Kendall's name see that the money IS making a difference. This is a major discovery for the type of cancer Kendall had, and I am hopeful that it will lead to some new treatments soon.

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I also wanted to share with you this excerpt from an email I got from Curesearch: (see the full text at: http://curesearchnccf.blogspot.com/)

"Tuesday, May 27, 2008

CureSearch is excited to share with you news that the United States
Senate has just passed legislation for the Allard-Clinton "National
Childhood Cancer Awareness Day" Resolution, by unanimous consent.

The measure, sponsored by Senators Wayne Allard (R-CO) and Hillary
Rodham Clinton (D-NY), sets aside September 13th of each year to call
attention to this urgent national health issue.

"Never before in history has the dream of eliminating childhood cancer
been so attainable, yet seemed so elusive," said Senator Allard. "We
live in a nation where the effectiveness of treatments and technology
offer hope to children who dream of a bright future. Each case of
childhood cancer is a very personal tragedy that can strike any family
with children, at anytime, anywhere. In setting aside September 13th
to recognize this battle on cancer, we continue of our efforts to draw
attention to the victims of childhood cancer and the great work of the
families and organizations who continue the fight."

Cancer remains the #1 cause of death from disease in children. Every
school day, 46 young people, or two classrooms of students, are
diagnosed with cancer in this country. More than 12,500 children are
diagnosed with cancer each year in the United States. CureSearch
supports the live-saving research of the Children's Oncology Group and
is launching a worldwide strategic initiative to conquer childhood
cancer, conquer it sooner, fully and for all time."

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As for us, Zach has been having a great time lately. We had fun at White Post Farms on their bouncing weekend (they had their inflatable bouncers up) last Sunday with Josette's girls, Gia and Faith. I now have TONS of photos to go through, but I thought I'd post some of the coolest ones. You can see me with my hair growing back in. Not too bad I think.... but I do miss being able to pull it into a pony tail! I also put a few from Zachary's birthday up. Zachary went on his field trip to Benner's farm this week. He was very excited. He had been there with Kendall before, and he enjoyed seeing it again. So far, both of his first two field trips for school have been places he had been to with Kendall! This isn't all that surprising, as Kendall had been to so many places. I did my best to take him everywhere I could think of. And still, I will never feel we did enough. How could I, there just wasn't enough time.

I think about time a lot now. When I was younger, time seemed to just crawl by. The school year seemed endless, and the summers seemed long. As far as I know, there are still just 365 (or 6) days in a year, and yet the years seem so much shorter now. Kendall's life just blinked past so fast it is almost hard to believe it was real sometimes. More than a year has passed since I last saw him, and yet at times it seems like it was just last week. I still hear his voice sometimes in my head. I cannot even eat breakfast without the memories flooding in. I still use the coffee mug he picked for me at the Ronald McDonald house. I eat some sugar snap peas, and remember how much he loved them, and how he would fight Zach for the "monster peas"... the really big ones. They loved popping them out of the shells. Zach and I went swimming today in the outside pool at Nonni's. It was early evening, the water was warm, and the pool was empty except for us. We had fun, but I couldn't help but remember playing in that very same pool with my boys so many times. Last week, someone asked Zach what his favorite part of our Make a Wish trip to Disney was, and he answered, "the pool." He was serious too. Of all the theme parks and restaurants, and character greetings, the part that most stuck out in his mind, was when he and Kendall went swimming at Give Kids The World and it was the first time they went under the water. Kendall was scaring my mom half to death by holding his breath and dunking under the water, then coming up laughing maniacally. He did this over and over, holding his breath longer each time. I was right there with him of course, but it sure made my mom scared. Then Zach started. It wasn't long after that when they were able to swim for real. Kendall loved the water.

Anyway, enough reminiscing now. I need to get some sleep. Some days it comes easier than others.
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Time you enjoyed wasting is not wasted time.
- T. S. Elliot

Wednesday, May 21, 2008 11:53 PM CDT

I am just heartbroken yet again to tell you of the death of yet ANOTHER brave NB warrior - Spencer . Another amazing life cut too short. Please keep his devastated family in your prayers.

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As Memorial Day approaches, I find myself thinking of Kendall even more again. He was diagnosed on Memorial day weekend of 2004. We spent that weekend in the hospital. Now,I wish I could spend another Memorial day there with my precious little angel. I thought at the time having to spend a weekend in the hospital was one of the worst things. Now I know there is much worse. I couldn't sleep,so I decided to upload a bunch of photos from my old computer (I will get around to getting the found photos from the Olympus camera, and Zachary's birthday photos uploaded soon!). Anyway, I uploaded photos from Easter of 2006. That was the one we spent at Sports Plus. At the time, I was simply not in a "religious" frame of mind. In many ways, that Easter was the most empty and hollow one I can remember. But I look at those photos, of us laughing, of the boys so very happy and excited.... and I can't help but smile and remember how much fun we used to have. I miss him so much. I realize in many ways I go about my daily buisiness and it isn't so noticeable. But it is always there. This huge hole I carry in my heart that will never be filled.

I was looking for something in my wallet, and tucked into an obscure pocket I found a folded up frequent rider ticket for the carousel at Smith Haven mall. It had nine of the 10 holes punched (you punch 10, you get a free ride). This was the last of many of these cards I had. We rode that thing so often, the lady at the booth recognized us and often gave us free or longer rides anyway. One day we went back and it was closed for renovations. It was never brought back. I don't know why I still have that card. I keep thinking I should throw it away or at least put it in a memory box or something. I put it back in my wallet again.

I had a lot on my mind to write about, but I all seems to have gone now. Once I heard about the death of Spencer, my mind just got consumed with those thoughts. I hope to get around to uploading the other photos soon. Zachary is working on his thank you cards and I hope to have them done soon. Thank you to everyone who follows our story still.

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UPCOMING FUNDRAISERS:

Alex's Lemonade Stand hosted by my brother's friend Charlie Curley: Curley Family Fundraising Page.

Walk to Make the SunRise: All of us are walking and you can look us up at www.sunrisedaycamp.org. But this is Neil's first walk, so he can use all the support he can get:
link: the Neil's page. I will have some raffles to sell for this walk, and will let you know how to get them as soon as I can.

I'll be getting more info on this walk shortly.

Friday, May 16, 2008 9:48 PM CDT

I am so sad to say that Emily passed away on Monday. She was also a twin, and leaves behind an adorable sister, Mary Grace, and her devastated parents. Her path was strangely parallel to ours. She was diagnosed just a bit before Kendall, and her family choose to be treated at MSK, flying up back and forth from Florida for treatment. She relapsed just a few weeks before Kendall did. Now yet another brave little child is gone too soon. It is so wrong.

Please also keep Spencer in your prayers. He is having a tough time, and they are trying a new chemo in the hopes of making him more comfortable. Check out the photo essay link on the bottom of his page. He is an amazing little boy.

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I was hoping to have new photos by now, but I just can't seem to find the time to upload them. Anyway, sorry for the lack of updates, but Mother's Day was pretty quiet around here. It wasn't a terrible day. We spent the morning with my mom and Fritz, then the afternoon relaxing at home.

Zachary's birthday was a lot of fun. Thank you for all who came. He LOVED the Laser Kingdom party. His cousins were there, at least for the first couple of games, and several friends from school too, including Dominic! The kids all loved shooting Neil, who unwisely dressed in orange and gray stripes, making him an unmissable target. Later, we went back to my mom's house, and more of our friends came there. We didn't even see Zach for about two hours while he ran around with his friends and cousins. Thanks to mom for letting us use her place. I hope to have photos up soon.

We had another interesting coincidence, and yet more proof of the general kindness that is out there. Zachary came home last Friday with a package in his bag, and a note for me. I opened the note, and it was from one of the ladies on the PTA. I had met Victoria briefly when stuffing the treat bags for the children's Halloween celebration. She saw the St. Baldrick's flyers, and recognized me, and went onto our site and was very touched by our story. She wanted to do something nice for Zach, and she works for a company that makes the Star Wars toys. She was waiting for one of the special collector's ones to be available, these have black or gold coins on the package instead of the standard silver. On Zachary's birthday, one of the black coins ones was finally there! She sent it in his backpack. Zach was THRILLED of course. He didn't even mind making the thank you note.

(btw, we will be working on the Thank you's from his birthday this weekend, and probably a bit into the week!)

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UPCOMING FUNDRAISERS:

Alex's Lemonade Stand hosted by my brother's friend Charlie Curley: Curley Family Fundraising Page.

Walk to Make the SunRise: All of us are walking and you can look us up at www.sunrisedaycamp.org. But this is Neil's first walk, so he can use all the support he can get:
link: the Neil's page. I will have some raffles to sell for this walk, and will let you know how to get them as soon as I can.

I'll be getting more info on this walk shortly.

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Thank you everyone for your love and support. Thank you for all the kind wishes.

Aimee

Wednesday, May 7, 2008 8:23 PM CDT

Bittersweet is the word that many of the "Angel Parents" use to describe days like this. It is so hard to celebrate the birthday of one child, while mourning the loss of another. But I think we managed pretty well. Luckily, Zachary's party is not until Saturday, so we will be ready to celebrate more then.

I went to Zachary's class today (I'll post some photos later this week... so cute!!). We had pudding cups as a special treat, and did a bookmark craft with foam animal stickers. The kids were so adorable and just so full of life. I loved being there with Zach, but of course I am still so heartbroken that I never had that chance with Kendall. Then I remember that we were able to have great class parties at The Morgan Center, and I am yet again so thankful for Nancy, Rod, their family, and the staff at the center for providing the only bit of "normal" school experience that Kendall ever had. The quotes are there around normal, because in many ways it was better than normal. But back to Zach. After school I took him to Kid's Club at our church, and he had a great time there while I went and ordered the food for Saturday. He can't wait to sing in church on Sunday. He even made me a beautiful Mother's day card. After, we all met at the cemetery, and Zachary painted messages on some balloons for Kendall. He was insistent that he wanted paint, not marker. I found the painting kit we had from Stony Brook. During Kendall's last few weeks there, some one had given us a little kit of paints. I am so sorry I don't recall who (we got SOOOOO much stuff). Kendall decorated his room there with dozens of these painted creations. He would make a type of Rorschach's blot with them, then decide what they looked like. Most of them were butterflies and dragon flies, but there were other things too. I wish I could remember. I have these all saved and I may actually look at them in time and see if I labeled them at all. Zach made quite a few of these too.... and maybe that is why he wanted to paint the balloons. Painting was something they enjoyed together. Anyway, we released three balloons, with messages like "I love you", "I miss you", and "Happy Birthday". We tied a Thomas balloon to some of the flowers that were placed there (probably by my mom). I was happy to see the little frog and rock that my mom left there were still there too. It is likely they will be taken away or destroyed during the mowing, so I may take them on Sunday and put them in my front planting bed or maybe bring them to Mom's house.

We were going to go to Chuck E. Cheese's afterwards, but the trip to the cemetery really sapped the life out of us. I am sorry to say that even though I promised I wouldn't, I did have a bit of a self-pitying crying fit in the car on the way back. Poor Zach. It makes me so mad that he will likely never really get to experience a completely happy birthday. I promise to do better next year. But it was Zach that choose to postpone his Chuck E. Cheese night (I think Neil is taking him tomorrow or Friday instead), and to just stay home and play Spiderman on the Wii with Neil instead. We got his favorite dinner of egg rolls and wonton soup and just enjoyed a quiet evening. Like I said, he will get to really celebrate the day on Saturday, which is also my Mom's birthday.

I did get a sign from Kendall yesterday, and it was really something. I have been cleaning out a bit around here, and I came across an old 35mm Olympus camera from Neil's aunt's house. I was going to see if I could sell it on Craig's list, but I noticed it had some film in it. I took it to the CVS figuring it was maybe some photos that Neil's mom or aunt had taken years ago. I figured they probably wouldn't even be able to develop them after so much time. I left them there two weeks ago, and just haven't had a chance to get back to pick them up. While I was running around yesterday getting things ready for the party, I remembered I had a phone message from CVS about them. I was on my way to the gym, and I was suddenly struck by a strong urge to pick up those photos (the gym is around the corner from the CVS... but it meant going a little out of my way). I opened them in the car, and I was just stunned. The photos were of Kendall in Stony Brook on a day when our dear friend from the Morgan Center Molly had come with her mom to visit!!!! I have absolutely no recollection of bringing this camera to the hospital. I had my digital then. I am sure I brought it so that Zach could take some pictures. He was always wanting to take pictures, and I didn't like him using my camera because it is expensive. I must have noticed the film, and figured I'd let him finish out the roll. Several of the pictures were of Zach and Molly, so I must have taken those (or maybe Donna did). The quality of the photos isn't terrific, but there is a great one of me with Kendall and Zach. Kendall is playing his video game and surrounded by his ninja turtles and stuffed animals. I remember Josette visited us that day too, and I think Danielle brought Harrison. But I don't have photos of that (they may have come on different days... my memory is so bad from that time). Anyway, the photos are precious, and I will share them here as soon as I get them on digital form (my mom took the negatives so she could have a disk made). It is such an amazing thing to come across these photos. I remember Molly's mom had brought with her a video of the newscast with Molly in it from the St. Baldrick's event she attended in the city earlier that month (I had missed it and wanted to see it).

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My brother's friend Charlie is doing a great job with his Lemoande Stand already. They are holding it in Kendall's honor. Here is the link: Curley Family Fundraising Page. Thank you everyone for supporting this wonderful organization. The Scott's are an absolutely amazing family, and Alex was an inspiration to us all. What an incredible little girl. The money goes to research and fellowship grants.

Also, we will be walking at the Walk to Make the Sunrise... even Neil... on June 8th. I'll post some photos from last year's walk and talk more about it next week. But in the meantime, here is the link: the Neil's page. I will have some raffles to sell for this walk, and will let you know how to get them as soon as I can.

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Please keep our fellow cancer warriors in your prayers. This week, we got devastating news on two of the families on my NB listserve. Janie is a beautiful little girl whose mom has been so supportive of the other families on the list, and she just found out that the last treatment failed and she is now not eligible for several promising studies. Hopefully the doctors will come up with something for her quickly.

Emily is another twin, like Kendall. She was diagnosed not long before him, and relapsed within two weeks of him. Her family travels from Florida to New York (MSK) for treatment. Sadly, her treatment options have run out, and they are now beginning the painful process of hospice care. My heart goes out to this brave family... especially to Emily's sister MaryGrace. It is just so heartbreaking.

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Thank you to everyone for the kind guestbook messages, emails, phone calls, and cards/letters. I am always so touched by how many people remember us and reach out to us still.

Friday, April 25, 2008 9:40 PM CDT

I am just heartbroken over the loss of yet another brave NB warrior. Austin Melgar fought so hard, and overcame so much. His family (both parents are doctors) tried EVERYTHING. Please keep this devastated family in your prayers.

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It has been just over a month since I shaved my head, and I have to say, it has been interesting. My hair is growing quickly, and it is more than a half-inch long now. Zachary actually needs a haircut again! Thank you everyone who donated. I will send out the thank you emails to those on my list shortly. I was waiting for final totals, but it seems they are going to come in drips and drabs. Also, I just got a few more checks from my sister's office! Way to go Kath! But I'll send to those I can. I cannot get on Zachary's page to add a photo or to get the list of donors, as I apparently made some sort of error when doing the last-minute registration. I'll have to call them and see if they can get me onto it. But thank you to those who donated on his head as well. I am really touched by the outpouring of love and support. It is a good cause, and I truly feel the cure is within our grasps.

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In other fundraising news, my brother's friend Charlie is holding an Alex's Lemonade Stand in Kendall's honor! I am just so amazed at the kindness and generosity of people. Here is his website that he set up: http://www.firstgiving.com/4kendalljackson. I'll set up a link in another update, but you can cut and paste that to get to the site. I think the stand is being held June 7th in New Jersey, but I will get more details later. I am hoping to be able to attend, but we have anotehr fundraiser that Sunday, and it just may not be possible.

Neil will be joining Zach and I at the Sunrise Daycamp walk on June 8th! Last year's walk was a lot of fun, and raised tons of money. I don't suspect Neil will do a whole lot of actual fundraising, but he is determined to be in shape to do the challenge walk! It is a couple of miles, mostly uphill. There is a great carnival-type party at the end too. We'd be happy to have some more walkers, and I can promise it will be a fun day, so come and join us. I have joined Karen's team (she was the MC at our St. Baldrick's event) and all are welcome to join us.

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Zachary had a fun week off from school. However, strangely, he has been telling me how much he loves school and how much he misses it a lot this week. Now, during the school year he never wants to go and says he hates it. Interesting.

Zach got to spend Monday and Tuesday playing with his friends at Nonni's and Poppi's. On Wednesday, we went to the Cradle of Aviation Museum with Josette's girls, Gia and Faith. We used the tickets I won at the Morgan Center fundraiser! It was a blast and we had a great time. I took my nephew Nicholas with us too. He was sooooo cute. I'll add a photo of him up top. He has gotten so big now. He is almost two. We had a really great time, but it was tiring. On Thursday, Zachary was back at John Theissen's place for an afternoon of fun and games with a couple of the Morgan Center kids. John is truly such a generous and kind person. Zach loved playing video games with John jr. Such a wonderful family.

We were originally going out to lunch with some kids from Zachary's Ninja class today, but it was so nice out, we all decided on a playdate at one of their houses. We ordered in pizza and the kids had so much fun they all missed their classes! Oh well. I'll make it up next week. Zachary just loves to spend time with other children. He seems very much OK on the outside, but on the way home, I was taking to him about what to do for the rest of the evening, and he made the comment that "Things were so much better when Kendall was around". It brought tears to my eyes again. He misses his companion so much. We all do, but there is really a special bond among twins. Even after having what seems like a perfectly enjoyable time, he still feels that loss so strongly. I just know he was thinking about how much fun Kendall would have had with him, and how much he would have loved Ninja classes.

I told him we could go to the Gym so I could work off some of those cookies and donuts, but I forgot they close early on Friday (I don't think the even do childcare on Friday either). So we got there and they were closed. I was going to do some shopping, but I ended up going to my mom's instead. I used the treadmill at her clubhouse and Zachary got to play with another little boy at their playground. So it worked out great. He was exhaused when we got home and fell right to sleep. I have to work tomorrow, so I will be joining him shortly.

Thank you again to everyone who still keeps reading my ramblings.

Sunday, April 20, 2008 11:41 PM CDT

Friday the 18th would have been my dad's 68th birthday. I was just thinking of how awful it is, that his loss, which was so devastating at the time, really paled in comparison to my son's diagnosis of cancer about a year later, and his death three years later. At the time, I thought the pain of losing a parent unexpectedly, at a fairly young age, was just about the most horrible thing ever. Little did I know.

Anyway, we had an interesting week. I picked up Zachary's new bicycle from the John Theissen's. It is really cool. I also managed to get the dirt to fill in my front planting bed, and I have weeded it and reorganized it. Still haven't found a stump grinder, but I have a few leads. In the meantime, Zach and I will be planting some flowers soon. I will then get to work on the side area where I told Zach he could plant a few things, and will find some ground cover for two large areas in the back. I hope to have my yard in good shape for a possible barbecue this summer (don't hold your breath.. I said that last summer too!). This time I'm really going to try though.

The multiple trips to Holtsville Park to get dirt were a real jog down memory lane though. It was a place so special to us. Many of you remember we held the boy's fourth and final birthday party together there. And I used to bring the boys there in the good weather... starting from when they were just a few months old. During Kendall's treatment, it was one of the places I could bring him even when his counts weren't so great because it was outdoors. The only animals you could feed were the goats, and they really didn't touch them. I'd just clean their hands well afterwards. So on Saturday, I decided after work to take Zachary with me there to pick up the last load of dirt and for a nice walk through the zoo area. We got the dirt - Zachary even helped me shovel some of it - then we headed to the zoo. I couldn't believe who I saw when I walked in, but Michael's family! More angels sent to me with messages. Michael died during Kendall's initial treatment. The family spent the last two or three months of his life at Stony Brook, and that was just as we were getting started there. Kendall bonded with Michael from the start. He was definitely drawn to him, even though he was a teenager at the time. His sister Audrey was so sweet. She would be there almost every day. She would sometimes play with my boys and entertain them for a few minutes so I could get some coffee or make a phone call. She is a beautiful teenager now. Her parents have been through a lot, and still they reach out to help others. Barbara encouraged me again to go to the bereavement camp in Maine at the end of May. I am going to see if I can talk Neil into it, but it won't be easy. He is not one for doing groups. Anyway, we walked around with them for a bit and caught up, and it was great seeing them.

I wanted to share an email I got from Nancy Zuch, the boys' preschool teacher and founder of The Morgan Center:

" just wanted to let you know how much I have been thinking about you, Kendall, Zachary and Neil these past two weeks. Kendall is on my mind so much and I can’t believe that it has been a year since he was here. He was on my mind all day last Friday, but I was too sad to email you. I know he knew this because I got a sign. I have a basket sitting on top of my microwave with many “important” papers, and it is therefore overstuffed. I was in my kitchen thinking of Kendall and my heart felt so heavy. I reached for the cabinet above the microwave and something slipped out of the pile of papers. I absentmindedly grabbed it before it fell, and when I looked down I was looking into a beautiful picture of Kendall smiling. It was one you sent me with a thank you note inside. As I was looking at it I guess the pile was still unsettled when a second card slipped out, and again I was looking at another picture of Kendall which you had sent to Morgan. I was stunned. I had forgotten that these pictures were in this pile and have not seen them for such a long time. To have both pictures slip out into my hands, out of the middle of this paper pile, on this day was no doubt a sign. This seemed to bring a certain kind of peace."

Thank you for thinking of us Nancy. I also got a really nice card from CHOP, and Alex's Lemonade Stand contacted me. They want Kendall to be a featured child. I'll submit something to them soon and will let you all know when it will be on their website. I finally got around to sending photos of Kendall to my brother Nick's friend Charlie, who will be hosting an Alex's Lemoande Stand in his honor on June 7, 2008... I think in Philly or New Jersey. I'll get the details out as I get them.

Also I wanted to let everyone know that the family of the very beautiful Angel Ashleigh has published a new book inspired by this very bright and insightful little girl. The money from the proceeds will go towards Children's Neuroblastoma Cancer Foundation. Also, another easy ways to help raise money are to use Goodsearch as your primary search engine. You can pick whatever charity you want, and when you search (it uses Yahoo's search engine, so you will get the same hits), some money will go to your oganization. Just a few cents, but it adds up. When you are shopping online, try going through I Give.com. Many of the stores you already use are probably there, and you can choose a charity to shop for. I get all my Avon this way. I can still choose my local representative (in my case, my friend Helene Berton), and I can have her deliver it and pay her like I usually do. She gets the same credit for the sale, and a small percentage goes towards CNCF. You can also do this through Upromise I believe, for those who are saving for college.

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I wanted to share a couple of poems that were emailed to me this week. These were written by Kirt Spencer, who I have never met. He found our caringbridge site though Angel Benny Petz's website, and was inspired to write these poems. The first one was written back when Kendall died. He resent the email to me at my request, because I had lost the original during those fist stressful days. The second one he sent on the anniversary. The fact that this person who never even met us, would be so kind, and so touched by my family to remember us even a year later, is just amazing to me. The internet is a very strange and wonderful thing. Anyway, here are the poems. I hope you enjoy them:

"Kendall
by Kirt Spencer
04/11/07

I held his tiny hand, and he held mine
We walked the beach, lost track of time

He wanted to know why the sky was blue
I wasn’t sure myself; I never really knew

He wanted to know where the sun went at night
That it got dark, and scary didn’t seem right

He slept with a night light to make him brave
Otherwise sleeping alone, was like being in a cave

We wet our feet in the tide; cooled by gurgling ocean waters
We were father and son, man to man, a couple of plotters

His future was in sight, so we made some plans
But things changed; God’s will, not man’s

There was this thing called cancer, a neuroblastoma
Big word, nasty word, with a stinky aroma

In the twinkling of an eye, our plans got changed
Our life put on hold, everything else rearranged

Life became one of needles, white coats, and test after test
Any days out, away from the hospital were always the best

Trips to the zoo, museum, and even a big fire truck
Had a chance to hold a bunny, and a little fuzzy duck

Sliding down slides with grandma and momma too
Went to Disneyworld, where there was so much to do

Give Kids The World, really took us in
When we were done, we knew we had been

Mom crowded a lifetime of living into five short years
No regrets, no remorse, shedding both kinds of tears

They say the eyes are the windows to the soul
They sparkle, they shine, some as dark as coal

Sometimes they beckon, and call out to those around
Sometimes they’re silent and make not a sound

Flash forward to the East Coast where a family’s in distress
Where there was order, things seem kind of a mess

Total surprise to learn of Kendall’s deteriorating condition
I’m sure we all had hoped for some kind of remission

His life, much like a reality show has been on display
Except in this show, many viewers, know how to pray

But with the same results, the votes get a tally
And we learn that in vain, many of us did rally

>From the photos and clips, we met the family Jackson
And from day to day, they were the main attraction

We’ve shared your pain, and your moments of joys
Kendall, by a few minutes your second born, of two boys

Zachary hung tough, after suffering brotherly rejection
Giving his sibling, a ninja turtle warrior for inspection

Neil’s been the dad of dad, no one could have asked for more
And mother Aimee, by all, has come to be adored

And even when her own son was suffering; continuing to struggle
She was telling us who needed our prayers; a spiritual snuggle

My hats off to you and yours, for your courage and strength
We’ve learned of your love, its depth and its length

It is with sadness that this day has to come
Leaving many a reader feeling kind of numb

Oh that it could have been later, much later, not now
We’ve got to “kick cancer’s butt”, has been the vow

But when another of God’s kids is given his wings
Makes you wonder just who’s pulling the strings

In a mood now somber, serene and kind of morose
The distance between heaven and earth’s really close

And when for the last time, the eyes go shut
Always remember, we’ve got to kick cancer’s butt"

and here is the second one, sent to me last week:

"The Journey
by Kirt Spencer
04/10/08

A year for some a lifetime and more,
A year for others never evens the score

Kendall your second born, gone a year now
Keeping his memory alive, has been the vow

Little by little things returned, to as before
Although now with three, instead of four

Trips to the grave, a flower to lay
Dark of night, or gloom of day

Zachary began practicing the martial arts
Kendall remained inside many hearts

Heads were shaved or cut nearly bare
Support of friends and family always there

Back into the medical place, a job to do
Happy and healthy part of a crew

Sometimes a scent blowing in the wind
A smell, an odor or even perhaps a blend

The laughter of a child, the look on a face
Somehow familiar, or perhaps out of place

In the night when all was calm, and slumber rare
Eyes wet with tears, at the ceiling did stare

Putting the pieces together as Humpty once did
Back the way they were before or Heaven forbid

The year passed much like an amusement park
Sometimes in sunlight, sometimes in the dark

There were scary moments like at the spook house
Screaming as if, one had just spotted a mouse

There was the euphoria of the roller coaster
Like pulling some sweets right out of the toaster

The coaster lifts you to some favorable highs
Drops you to some lowly depths, with many sighs

Days of dizziness when the head kept on spinning
Days when you didn’t feel very much like grinning

Wet from the splashing log or riding down a plume
Days when you wished no one else was in the room

Days like cotton candy, a real sticky but sweet treat
Days when you consumed nothing not wanting to eat

Riding the Merry-Go-Round with blurry vision
Where, what to do next, such a big decision

No one ever promised this life would be easy
At times it just sucks, or makes us queasy

We muddle on, going through the motions
With no magic spells, and no magic potions

Stronger for having been; not understanding why
Touched by his spirit and strength; always nearby

Life is a journey and not a destination
It’s up on the platform and out of the station

It’s okay to remember or dwell on the past
Memories linger, and will forever last

It may get easier to handle as time goes by
But to say it’ll happen tomorrow would be a lie

You can’t say happy anniversary, it just won’t do
But after a year, many folks, still thinking of you

Total strangers, the loss of a son they still mourn
Noting the love of a mother since the day he was born

We parents think we’re smart with all the answers
Little kids should never have to battle, vicious cancers

But we don’t get to make the rules, or change the plans
It was always God will, and never really man’s

We can all rally for one another, fighting for one
Until we conquer cancer, the job is never done

Light a candle, a moment of silence and then a prayer
That people stand united, means we’re getting there

I tip my hat, bow my head, another milestone achieved
By day’s end, for you and others I will have grieved"

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Please keep Austin in your prayers. He hasn't given up yet, and neither should we. His amazing family is standing strong by his side through very difficult times and tough decisions. Please pray for them too.

Friday, April 11, 2008 12:18 AM, EDT

I'm leaving my previous post up so that those who missed it can see it.

Austin was transferred to Detroit. Please keep him and his family in your prayers that they may find the miracle they are hoping for.

Please also pray for the family of Tyler Stolp. He passed away on the 9th and joins our other angels.

I will be working around the house tomorrow. At some point we will probably go to the cemetery. I may go back with Zachary to release some balloons. Otherwise, we are keeping pretty much to ourselves I think. I've been sad, but coping OK. I am trying not to lend too much weight to this one day. I have missed Kendall every single day for a year now. I will miss him every single day for the next year, and the one after that, and the one after that, and so on....

Anyway, thank you all for the kind words, prayers, letters, emails and guestbook entries. It does help to know that there are people who still remember Kendall and care. I got a lovely card from Stony Brook, signed by many of the staff members there. Friends of Karen sent some nice flowers, even though they never met him. I'll bring them to the cemetery tomorrow. Our church also sent some beautiful remembrance cards. There are others too. I decided to share the photo of Kendall from the night before he died. He had a good day that day, and just looked so peaceful that I wanted to make sure to capture the moment. You can see his beloved cuddle frog there (Goldberg) and the his favorite quilt with the frogs on it. It was one of the first quilts we got at Stony Brook, and he just loved it. Paulette gave it to him because she saw he liked frogs. I keep this quilt in my car, and I often hold it or wrap it around me when I go to the cemetery.

I will also be releasing a few balloons and saying a pray for Zachary Hunter, Kendall's fellow angel. Zachary died from Histiocytosis on the same day as Kendall. Zachary was also a twin, and his brother's name was Kyle. Interestingly, Sister Lynn for years used to accidentally call Kendall "Kyle". Just another one of those amazing coincidences.... maybe.

So here's to you my little angel. I was so proud and honored to get to be your mom, even if only for a little while. We are grateful for the time we had, and for the many blessings that have come into our lives. Sometime later in the week, when I am up to it, I'll post my list of things I learned from Kendall. I have it saved somewhere, but for today, I will just sing the words I first sang to you, when I finally was able to hold you almost six years ago:

"You're just too good to be true, can't take my eyes off of you...."

Rest in peace baby.

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Wednesday, April 9, 2008 6:35 AM CDT

Please pray for Austin. He has been in a coma the last couple of weeks, and they are giving up any hope in Vermont where he is currently with his family. They are trying to have him transferred to Michigan, where they are willing to try a few other treatments to hopefully pull him out of this, but currently, they don't have a bed for him there. So his family is anxiously waiting to transport him. It must be just horrible.

Also, keep my friend Jackie in your prayers. She started another difficult round of chemo.

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I had the most odd experience yesterday. I feel the coincidences could only be a sign. As the year mark approaches (Friday), I have been getting a bit anxious. I know the time leading up to these significant days can be worse than the day itself, so I have been trying to stay busy and to focus on the positive things in my life. I have been taking some time each day to look through photos and stories about Kendall and cry my eyes out, so that I can be OK the rest of the time. But mostly I just try not to think about it too much. Yesterday morning, one of our patients came in, an old-timer who has been seeing my boss for the last 15 years or so. He is one of our distinguished firemen, and I always love to talk to these guys. It wasn't busy at the time so we chatted for a few minutes. I don't know how we got on the subject, but he told me he had lost his son to brain cancer at age 12, many years ago, and his wife to cancer four years ago. I wanted to tell him I lost my son too.... but I couldn't. I don't even know why, but the words would not come out of my mouth. I felt really crummy afterwards, like I had somehow dishonored Kendall's memory, just a few days before the one-year mark. But I soon became busy and didn't have time to really dwell on it. I got Zach from the bus stop, and one of his friends from up the block came over to play for a bit. Then we went to his Ninjutsu class, and I dropped him off at my mom's, as he hadn't seen them in a few days. I was on my way to the gym, when I decided to stop and get some water and a protein shake. I don't normally drink protein shakes, but I was hungry, and I didn't want to eat too much before working out. I originally was going to stop at 7-11. But for some reason, as I got closer, I decided to stop at Walgreen's instead. I wanted to see if they had any more of these sample tooth whitening trays. It is not a common thing for me to go there, even though it is close to my house. When Kendall was sick, I had to spend way too much time there, and many of my memories of the place are not happy. But, for some reason, I went there last night. I picked up some water and a drink, and as I was paying, I heard someone call my name. It is very rare that I meet any of the cancer families from Stony Brook in my normal wanderings. I do see some of them at special events and such, but it is usually not unexpected. However, here was Jen's father. He recognized me right away even with my bald (now short and fuzzy) head, because he had apparently been following our website. He had no idea I lived in the area, and his family doesn't actually live that close.....they were just stopping to get some stomach medicine for his wife on the way to Stony Brook. Sadly, Jen has relapsed. It was nice to see her and her dad though. She is such a strong young woman and the are a very sweet and devoted family. I can only hope that they can find some treatment for her. While we were talking, another lady turned around and said, "I know that voice!". It was Becky's mom! Another young girl treated at Stony Brook during the time we were there. She lives in my area and I used to sometimes run into her, but I hadn't in the past year or so. She had only recently heard about Kendall's death. A few minutes later, the mom of another child I knew from Stony Brook, Bryan, also walked in! It was like an odd support-group meeting! To top it all off... Susie, Kendall's favorite scheduling clerk, came in a few minutes later. She lives in the next town over, and I have no idea why she would come to this Walgreen's, when there is one the other way, but there she was. I have never seen her in the area before. She works in a different clinic now, but she remembered all of us and certainly Kendall. As I said, the coincidences are just too many to pass off. This was a sign... a message of some sorts. I remember writing a few journal entries back about how God sends you Angels (messengers) when you need them. Well, He sent me five all at once! I think next time I will be more able to speak of Kendall and maybe offer some words of support and understanding when someone tells me of their loss. Usually I am, I don't know why I had trouble that morning. I think it was because I was at work, and I generally keep my work and personal life separate. Or maybe it was because it was just so close to the date.

Speaking of the gym, on Friday last week, I finally hit the weight I was back when I started my Fitday journal!. This is a free online food diary, journal and exercises tracking system - www.fitday.com - my best weightloss secret. I started it in February of 2004, just three months before Kendall was diagnosed. I actually lost another 15 lbs or so before I started the slow gradual increase (with a few speedier times!) during the next three years of his treatment. I don't talk about my weight much here, because it isn't really important, but those who noticed I have lost weight sometimes wonder if I am eating OK. Anyone who knows me knows I am a stress eater, not a stress starver! I eat very well (too well sometimes) and I am going to the gym more now and really working on getting back into a healthy condition. But I digress. I only mention my weight because it was sort of a milestone for me, that I have lost all the weight I gained during that stressful time of my life, and I am starting over now. New hair, and new weight. I still have a long way to go before reaching my goal, but I am more motivated than ever to do it this time.

Zachary had a really great weekend. We had some fun at the park on Saturday, then watched Star Wars on TV (Zachary's favorite). On Sunday, he had a soccer game and played really well. We had to hurry after that to get changed and I took him to John Theissen's new Family Fun Center! It was amazing. Anyone who does not know about John, please go to his website and read about his amazing story (click on the link above or go to www.jtcf.org). His whole beautiful family has been such a blessing to us and a wonderful source of support. He brings joy to so many children and their families. His new Fun center is gorgeous. click on some of the photos. He has banks of plasma screen TV's with playstations, xbox's, and Wii's hooked up, and his Wish Room downstairs is like a huge toy store. As usual, he had good food and an entertainer, and just his general presences is so calming and amazing. John is himself a pediatric cancer survivor. If you go to his site and go to the Newsletter, then scroll down a bit, you will see a great picture of Kendall at his Day To Remember celebration. Right below it, is a wonderful photo of Drew and his friends.

Anyway, I had to all but tear Zachary away from the video games there to drop a raffle ticket in for one of the bikes. Would you believe it? We won! Just in time for his birthday. Too cool! We left there, and went to my friend Fran's house for her daughter's confirmation party. I cannot believe Nicole is 14 already! Time just flies. She is absolutely gorgeous, and one of the nicest teenagers I have ever met. Fran's brothers and sisters-in-law were also visiting with their kids, so Zachary had a nice group of kids to play with. He had a ball and was so happy to meet everyone. He really hit it off with Peter. They are the same age and share a love of Star Wars and video games. It was a great time and great food. I am only sorry Neil missed it. He just hasn't been feeling well. I think it is partly depression and stress of the one-year time coming, but he also has a cold and cough, and he was going back to the doctor this morning for a repeat throat culture. His strep came negative, but his throat still hurts so they are going to check again. Hopefully he will start to feel better again soon.

Anyway, I have to get Zach to school and me to work. I don't know if I will update again before Friday, probably not. But we will be OK. If I don't answer the phone, don't get insulted. I may not feel like talking. It is hard to tell how I will feel. But feel free to call if you want anyone, we never mind or consider it an intrusion. Like I said, if we don't feel up to talking, we just don't answer. We'll get back to you sooner or later:)

Love to all,

Kendall's Mom.

Friday, April 4, 2008 10:22 PM CDT

Today marks one year to the day since the beautiful Sophia passed away. It was one week later that Kendall died. On this day last year, I was reading back in the journal, and it was when his lip suddenly swelled up, probably as a reaction to something or other (take your pick, one of the meds, blood products, cancer, some sort of virus or bacteria...). It was awful to look at, but luckily it only lasted a couple of days. He was starting to show signs of improvement at this point, probably from the radiation... but it didn't last long. It was a good day for him, the Easter bunny came and dropped off some nice things, and we made these Rorschach-style inkblots with colorful paints and paper. The boys had a ball naming them... one was a butterfly, one was a mountain, one was a starfighter..., etc. I am not sure if I wrote the names down or not. I do have most of these paintings still in the large box that I put all the hospital stuff in. I haven't looked in there since I put it away. I am not quite ready yet. Maybe next week. By the time we left the hospital, his walls and bed were papered with these little paintings.

So now, this is my second week spent without hair. I am getting used to it now, and I forget that it is gone sometimes. I find myself constantly going to move hair out of my eyes that isn't there. It is a good experience and I'm glad we did it. I have been able to experience first-hand some of the odd reactions you get when your appearance changes so drastically. Very few people who don't know me well ask me about it. Generally, people glance at me, then quickly look away. Sometimes they get a somewhat pitiful look first. For the first time, I can understand a little of what these kids have to endure on an ongoing basis. There are those who do ask you what happened, and I kind of prefer them. At least they don't pretend like I don't exist. I always enjoy the chance to talk about Kendall and educate people about the horrors of childhood cancer, and this has given me a few chances I would otherwise not have had. I do wear a scarf at work (so far), because it just looks more professional with the kind of clothes I wear. But I may try without it for a few days too. I tend to leave my head uncovered when shopping or at the gym, because it is more comfortable that way, but outdoors I must have a hat, or hood or bandana. I just cannot tolerate the cold on my head! But the weather is warming up soon, so that will change too. My hair is starting to come in more.. and looks kind of short and fuzzy now.

There are so many people I want to thank who contributed in many ways to the event. I was hoping we would have final totals by now, so that I could add that into the thank you notes (actually, they are emails.... I still have about a dozen thank you notes from Kendall's funeral last year to send out... the bulk of them went out in January and February this year... you are much more likely to get an email from me than a letter!). Anyway, I was hoping to get the final totals first, but I may just have to leave that part of the letter out. I will post it here too, along with a list of supporters of the event.

In other news, as unbelievable as it may seem, I have strep throat! I haven't had it since I was 8 or 9! Somehow, Neil .. who was complaining of his throat first... and Zachary, who is his usual healthy self, do NOT have it. I'm guessing I picked it up at work or something. This is so hard to fathom, because I am a fanatical hand-washer and purell user. I guess all the extra stress lowered my resistance or something. Anyway, I'm on antibiotics now, and fairly safe to be around, but I had to skip the Morgan Center Easter party today, much to Zach's dismay. There wasn't any choice, I wasn't chancing going there when it wasn't even a full 24 hours on antibiotics. Also, my throat still hurt a lot this morning, so I'm not sure the AB's are working yet. It seems better now, and my feverish feeling is gone... so maybe it is getting better.

My million-dollar radioactive kitty is back home now too. Neil picked her up on Wednesday, and she howled all night because we wouldn't let her in the bedroom. We cannot chance her jumping up on the bed and trying to cuddle with us. It was so sad, but she is starting to settle down now. She still looks sadly at the bedroom door, which is now closed all the time, but she doesn't howl any more. She otherwise looks well and healthy, and is eating well and seems to feel just fine. Hopefully the treatment is working!

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Please keep Austin in your prayers. He seems to be in a coma, apparently due to one of the treatments he got. The are not sure if it is reversible or not at this point. Also, pray for Jackie who has been having a rough time with the fevers and neutropenia. And pray for Katie, who is having trouble with stomach pain.

Please also keep Tyler and his family in your prayers. Tyler is at home on hospice, and has been struggling with pain issues lately.

Really, I could sit here and name children all night. There are just too many of them. I'll try to get some more info on what you an do to help on my next page.

For now, goodnight all!

Wednesday, March 26, 2008 8:32 PM CDT

UPDATE: Thursday March 26, 2008 2:29pm

It is with a very heavy heart that I have to let you know that Heaven welcomed another brave little angel todady. Krista died at around 2am this morning. I can't sum up her life any better than Julia's mom Kathy did on her site, so follow her link for a beautiful and touching tribute to this amazing little girl. Please keep her devastated family in your prayers. The doctors, nurses, social workers, childlife and other staff at Stony Brook too, as I am sure they are also devastated by this loss. Krista spent so much time there and was basically adopted by the whole hospital. Many of the families treated during the last few years were also touched by this loving and caring child, who would just reach out and grab your heart. We all feel the loss, but none as strongly as the Didericksen's who have loved her, and cared for her, and have remained close by her side throughout. As I said to Cheryl yesterday, when she wrote that Krista said she needed a miracle, the first thing that came to mind was that Krista WAS a MIRACLE. Anyone who ever met her would agree.

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I'm afraid I only have time for a short update. I don't have exact numbers from the event, but it looks like we raised close to $18,000! Awesome! I can't thank everyone enough. I think it did us all a world of good.

I went up to Stony Brook today, back to the 11th floor, back to the room that was always known to us as, "Kendall's Room", to visit an old friend. Please, get your best prayers out for one of the bravest and strongest and sweetest little angels I have ever met, Krista is really struggling right now. This disease is so aweful in the way it just steals the childhood from these beautiful children. She is such a brave and spunky little thing too. Even as sick as she is, and feeling as bad as she does, Krista decided to open up her own "Vacation Drink Stand" (some slupees, mixed with soda, and served with little paper umbrellas from a local Chinese restaurant!). She has raised close to $200.00 so far, as she tells us she plans to send it to St. Judes to help them find a cure for cancer! What a doll. It is a great testament to the staff over at Stony Brook that they took this in stride, and have been helping her raise money. I put a few dollars in her jar too. Krista wasn't able to talk to me when I visited, but it was good to see her parents and she did squeeze my hand a few times and seemed to try and open her eyes briefly. But the pain is too much and they are keeping her comfortable right now with medication. My heart is just breaking for this family. I wish I could do something more for them, but right now there is nothing I can offer but my prayers. However, if those who are reading this want to join our virutal Slushee stand... just make a donation to St. Jude's in the name of Krista Dideriksen.

I also wanted to let those who didn't get a chance to donate to our St. Baldrick's event know, that another really terrific kid will be shaving next Saturday! Please give your support to Billy G. who will be shaving in honor of his sister Molly. That day, is a tough one for the family as it is the anniversary of their father's death. Please keep this sweet family in your prayers.

I don't have time for much else right now. Those who missed it, can read my speech in the Journal History.

Tuesday, March 25, 2008 6:43 EDT

I just wanted to post at least one photo from the event. As you can see, we are gorgeous! I will get more up and a new update later or tomorrow. It takes some time to sort through the digital photos sent from several people and upload them.

Sunday, March 23, 2008 1:45 AM CDT

I still can't sleep. Too much caffeine, noise and adrenalin I guess!

The event was a great success, and a lot of fun and excitement. I don't have any photos yet as I didn't bring my camera, but others will hopefully send them to me soon.

There is some video of the event on one of our honored children's sites though! (Sorry, I'm not in these, but you can see some of the shaves and the entertainment). Gina Mulieri's mom took a few minutes to post about the even before going to sleep.

It will be a few days before the totals are counted, but we easily went over the $10,000 mark before we even started! I'll post some thank yous and credits in a future update, but we did have a surprise last-minute shavee at the event.... Zachary! As I was getting ready to be the last shavee, and say a very touching speech that I had worked on..... then cut down to a much shorter version in the interest of time.... Zachary said to me.... I want to be shaved too. I did not plan this for those who wondered. I had asked Zachary a few times before if he would like to be shaved when I found out there was another young boy entering, and he said no. I didn't push it at the time. It is a personal decision, and no one should feel bad about wanting to keep their hair! I asked him if he was sure, and he climbed up on the chair and said Yeah! Well, they passed the hat, and Zachary managed to raise an amazing $1100 in about three minutes! A large amount of that was the generous check from Blond D's of North Babylon. Our volunteer Barbers raised over $750.00 to donate to the event, and they decided to put it all on Zachary's cute head! I have to say, we have just met some amazing and wonderful people while putting together this event. I'm too tired to list them all now, but I promise to give a more detailed update in a couple of days, with photos of me and Zach.

As far as how I feel, it was liberating in a way. Right now I'm tired, and kind of cold, but I felt great during the event, and it was just the kind of thing to lift me out of the funk.

Anyway, we had a great night, and I will leave you with my speech I spoke at the event.

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I just wanted to say a few final words to thank everyone, all our friends, family, and members of the community, for supporting this event and making it a huge success. I also wanted to explain, in my own words, why we are here and why we are doing this.

Pediatric cancer is an absolute tragedy. Last November, on my church’s Remembrance day, I posted a list on my son’s website of all the children I knew or knew about who died from cancer. These were my son’s friends, and children of my friends, and children I knew from my online support groups. There were thirty children on that list, and since then, I have had to add three more. These children made a huge impact on me, and I am shaving today to honor their memories, but they are not the only reason we are here.

We are here for the brave children, still in treatment… for the ones just starting on this treacherous road, and for those who have been on it so long, they forgot where they started.

For the ones facing dangerous transplant or an uncertain future… and for the ones who have finished treatment whose parents try to hide their fear every time they get a fever, or unexplained pain, and who are often left dealing with long-term side effects or disabilities.

For the ones who are too young to speak for themselves, and the teenagers who are tired of speaking about it and just want to live their life and have fun like their friends.

For these children, it isn’t too late. The cancers which have had large sums of money dedicated to them generally have a better outcome, more treatment options, more screening and monitoring procedures, and treatments that are less toxic. For many types of pediatric cancers, this isn’t the case. We need more research, and more researchers, so that these children too can have a chance. St. Baldrick’s strives to give them that chance. So with no further ado “Take it all off!!!”

Saturday, March 22, 2008 6:43 AM EDT

URGENT PRAYER REQUEST:

I just found out that the first person who ever called me "Kendall's Mom", the very sweet Krista is in need of urgent prayers. They were preparing to go in for more treatment, but ended up in the ICU instead. Please keep this brave child and her frightened family in your prayers.

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Friday, March 21, 2008 9:58 AM CDT

As far as I know, things are still critical for Austin Melgar. He needs a miracle. Please pray for this brave little boy and his family.

I would also like to add onto our prayer list an amazing little girl named Krista Didrekson. We first met her at Stony Brook when Kendall was initially treated. She was in the hospital for a long time, so we ended up getting to see quite a lot of the spunky little princess. She was so sweet and good natured, and her shy smile could just melt your heart. She has been through a lot in the last four years. Her family is hoping to start another clinical trial shortly, so keep her in your prayers.

Thank you for all those who joined the Bone Marrow Donor list in honor of Jackie. Over 262 people joined the registry in two weeks! Awesome! There has been an update that she actually have some donor options available for her! At least there is hope for this gorgeous little girl and her sweet family.

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I started setting up Zachary’s birthday party last week, which was kind of hard as you can imagine. To make matters worse, I asked Zachary which book he would like me to read at school. Of all things, he said he wanted the Scooby Doo book where he helps them solve a mystery. I thought that was a great idea. I had ordered it for Zachary on Christmas of 2006. I had one for Kendall too with a dinosaur theme, which he also loved. I haven’t taken the book out in over a year, and I completely forgot what it was about or what it said. As it turned out, when you place the personalization order, you are told to pick a few close friends who will be mentioned in the book. I completely choked up when I read the last page where it said, ‘ “Now I can have my own ice cream party with Kendall, Jessica, and Drew…” ‘. It was so surreal. It was the first time I really saw in print the three boys names all together like that, and it just hit me very hard. Zachary was very quiet afterwards, and he hasn’t been acting very nice towards Jessica lately. I think he is afraid to get too attached to her. Hopefully the school will contact me soon regarding setting up some therapy for him.
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Our St. Baldrick's event is going to be TOMORROW!!!! Saturday, March 22, 2008 at Spectacular Eastside Parties - 10 East 5th Street, Deer Park, NY - from 6-9 pm.

On Wednesday night we had a huge wrapping marathon for our event at Cindy’s house. We put together over 50 baskets! I was hoping to have a basket list from Cindy, but she forgot to send it to me. But some of them are really cool. There are some great prizes. We also have a DJ and entertainment, and there will be free games for the kids. There will be food sold at the event as well. There is no alcohol being served (sorry!).

I am so grateful for everyone who has donated on my head so far. I have already raised over $2000. That is just awesome. I will send thank you emails out, with some photos attached. For those that donated anonymously, be assured I have your names and addresses too. They just don’t show up on the website.

We are excited that News 12 is supposed to come to the event! They should be there by 7:00 p.m. with any luck. Of course, the way the news is there aren’t any guarentee’s that they will come through, but we are very hopeful.

I wanted to share the article the very nice young reporter named Amanda wrote for the Times of Middle Country:

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Thu, Mar 20, 2008 12:38 PM Email: news@tbrnewspapers.com | (631) 751-7744

This could get a little hairy
Volunteers will take it all off for annual cancer fundraiser

By Amanda Mayo and Patricia Proven

03/07/2008 | 02:04 PM
The St. Baldrick's Foundation is once again inviting volunteers to go bald to show support for children who lose their hair while undergoing chemotherapy treatments to battle cancer.

A months-long effort to raise money for cancer research will culminate locally on Saturday, when pledges have their heads shaved at Napper Tandy's pubs in Miller Place, Smithtown and Northport, and at Tommy's Place in Rocky Point.

This year, two Selden mothers, Cindy Merkler and Aimee Jackson, have joined the charity drive and are organizing a special March 22 event at Spectacular Eastside Parties in Deer Park. Jackson will be shaving her head in memory of her son, Kendall, who died of neuroblastoma last April. Merkler is shaving her head in honor of Alexa, a 3-year-old who's been battling cancer for the last eight months.

All proceeds raised during the events go directly to research and fellowship grants through the nonprofit St. Baldrick's Foundation.

The St. Baldrick's head-shaving event is the brainchild of three re-insurance industry executives, one of them a Northport resident, Tim Kenny. In 1999, after a round of golf, Kenny challenged his friends John Bender and Enda McDonnell to devise a way of giving back to the community, according to the organization.

So, they turned their industry's famed St. Patrick's Day party into a benefit. Having known some kids with cancer growing up, they decided to raise funds for research in a way that established camaraderie with kids, but would also turn heads, so to speak.

For many people, just seeing their public officials, neighbors and relatives get together for a good time and a good cause makes the event successful.

"For me, it's more about awareness; I want people to know why I'm bald," said Merkler, who noted that Spectacular Eastside Parties donated the children's party facility for the March 22 event.

Jackson said her husband shaved for prior events, but this is her first time. She said Merkler, a member of her church, heard about Kendall's illness and wanted to do a fundraiser for the Jackson family. That fundraiser, held in May 2007, raised $4,000.

"I don't think I would have made it through this year without people like Cindy," Jackson said.

So when her friend said she was going to shave her head for a St. Baldrick's event, Jackson decided to join her. "Me losing my hair in the scheme of things is a small sacrifice," she noted.

Merkler has two healthy kids, but said she believes that it's the community's responsibility to volunteer and help raise money for family and friends who are dealing with the disease.

"Families that are involved in this can't do anything but take care of their kids," she said.

Jackson says there is nothing she could do to honor her son's memory more than an event like St. Baldrick's. "We've had a lot of generosity from the community," she said.

Jackson's goal is to raise $5,000; Merkler is aiming for $2,000. The mothers said that while other local events are a lot of fun, the money from their event is specifically for families. There will be food, games and raffles, including one for tickets to Disney World.

Jackson and Merkler said they're excited and nervous to have their heads shaved in a few weeks. They want to raise as much awareness as they possibly can about the deadly disease.

"I want to stop it," Jackson said. "I want to see it gone forever."

Since the inaugural event in 2000, St. Baldrick's volunteers in 18 countries and 46 states have shaved 46,000 heads and raised over $34 million for cancer research.

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I think she did a great job. She managed to get all of our points across in a few paragraphs. There was one minor error, I was trying to say that the event is “family friendly” and was focused on children and families. That that it is specifically for the families. The money will be going to research and fellowship grants. Other than that, it is fantastic.

Bald quote of the day (I think this is the best one yet, it is my new motto!):

It is foolish to tear one’s hair in grief, as though sorrow would be made less with baldness ~ Marcus T. Cicero

Sunday, March 16, 2008 9:56 PM CDT

Please pray extra hard for Austin Melgar. He needs a miracle. They aren't sure if the symptoms he is showing are a side effect of the treatment, or if it is the cancer or an infection causing his problems. Right now he is on a ventilator until they can determine whether the problem is something treatable. I can tell you right now, there are few things more horrible than seeing your child on a ventilator. Please pray for his family that they can get through this very difficult time.

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If you haven't been tested to see if you are a bone marrow match for Jackie , please go ahead and do so soon. There is another drive being held (see details below) or you can call DKMS Americas at 1-866-340-DKMS or go to www.dkmsamericas.org to request a kit to be mailed to you.

Please note that it is a simple mouth swab to join the registry- NO BLOOD will be taken at the drives. IF you are a match to Jackie or someone else the National Bone Marrow Registry will contact you for further testing.

Please spread the word!!!

Wednesday, March 19, 2008, 3-8 pm
Town of Babylon Town Hall Anex
281 Phelps Lane, North Babylon 11703

I want to mention that if you are a match for someone on the registry, the process for obtaining the stem cells is not as bad as you might think. They no longer have to drill into bone to get the marrow (though they still call it a "marrow" donation). They can get the stem cells from your blood using a special machine. It is similar to the way I donate platelets (when I'm too too anemic). Kendall did his first stem cell collection at less than 3 years of age. He breezed right through it, and through the second one they did less than a year later. Please consider this life-giving donation. If they cannot find a donor for Jackie, her treatment options will be severely limited, and much more difficult.

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I've had a pretty up and down week. More down than usual for me. The grief just hits like a ton of bricks sometimes. Last week I read in a friend's journal that she took her children to the Franklin Institute and they had a new Star Wars exhibit there. I just burst into tears and was very down the rest of the night. Kendall would have LOVED that. So would Zachary. The opening photo is of Kendall at the Franklin. It was a real treat to go there and we had such a wonderful night there. I realized that I will always be coming across things Kendall didn't get to do that he would have liked. Zachary talks about stuff like that all the time. We were watching the Phineas and Ferb marathon, and just sitting quietly, when he suddenly came out with "You know what would make this perfect?" I was expecting him to say popcorn, but instead I got "If Kendall could be watching Phineas and Ferb with me." Ouch. I agreed with him, as it was the best I could do. But it still is so hard. His teacher tells me he is definitely speaking of Kendall more at school, and she feels he is very distracted and zoning out a lot. They will be setting him up with a therapist just to make sure he is processing everything OK.

The two movie clips I posted were from the last two Easter's. The first was from Easter 2006 which we spent at Sports Plus. I wasn't in a particularly religious mood at the time with all that had been going on. I was more concerned with the boys having some fun, after we had spent more than a month in the hospital for Kendall's first relapse treatment. So we went, with Mom and Fritz, and had a great time. Mom was trying to take a picture with my camera, and must have had the video button pushed down. She ended up getting a few seconds of video instead. The second video clip was last Easter during Stony Brook's egg hunt, not long after we got back from Church. Kendall was put on oxygen the next day, and increasing pain killers. He was gone within three days from this. I have another clip of him after he counted his eggs that is great too. I'll post it another time.

On Friday I went to a Lia Sophia fundraiser party at my friend Donna's house. She will be donating a portion of the proceeds to St. Baldrick's in honor of her very adorable daughter Molly. Molly is doing well off treatment, and is just so spunky and adorable. It was nice to see her, and she even demonstrated a bit of her Irish step dancing for us! She is quite talented. It was good to get out, and I was glad that Melissa and her mother-in-law came with me.

Today after church Zachary and I went to a birthday party for my coworker's children at the Atlantis Marine World aquarium in Riverhead. It was really wonderful. We hadn't been there in a very long time, and Zachary always loved it there. They have quite a bit of new stuff, so he was really excited. He must have hugged me at least five times and said "I love you... I'm so excited!!!!". I haven't seen him this happy in a long time. I was worried that the memories there would make him a bit sad, as it did for me, but not to worry. He had a great time. There were lots of kids his age, and he really took to another adorable little boy named Zachary. My Zachary had his most charming party manors on, and it was great to see him have a good day, even though it is so hard for me sometimes. I couldn't help but remember our trips there with Kendall. I had joined a few years ago, so we went there often. Sometimes I'd just stop in for a couple of hours on a whim. Kendall and Zachary loved it there. Now they have a new simulator ride that shows a different movie, and a cool archeological dig. Kendall would have loved those too. Zachary found some shark teeth and was very excited. It was really cool.

I went to the cemetery afterwards to place a palm cross on Kendall's grave. I didn't stay long today. I was just there the day before to clean the stone after the recent storms, and place some flowers. I don't go as often as I used to, because I'm really keeping busy and the weather in the winter makes it hard. I don't feel the need to as much too. The truth is, Kendall is not really there anyway. Kendall is always with me. But I used to go to the cemetery because it was a chance to just be alone with my thoughts, and focus on my grief, and not let outside things distract me. So I went on Saturday with some flowers. But as I drove in, I saw all these large palm crosses, and some little Easter eggs planted on lots of the sites. I was so upset, and burst into tears again, because I hadn't thought to bring Kendall an egg or a palm cross. I almost threw my flowers in the garbage I was so upset. I remembered how he loved the little palm cross that Sister Lynn brought, and the one my mom brought him last year, and here I just completely forgot. But when I got to his site, there was a large palm cross laying there next to his marker. My mom had brought it and placed it, probably a few days before, but it blew over. There was also an adorable rabbit holding an Easter egg with Kendall's name on it. This was also from Mom I'm sure. I fixed the flowers up and dug the cross in better, and I felt a lot better. Thanks Mom, you are always so thoughtful.

Anyway, later on Saturday, while I was collecting some items for our our St. Baldrick's event, I came across someone who really lifted my spirits, and I feel it was an sign sent from my Dad. I don't get so many from him as from Kendall, so this one is special!. I went into one of the local salons, and asked for donations. The woman was nice and she immediately began to write out a gift certificate for a manicure or something. I asked her name so that I could post it on the website, and she said it was Helen, and that no one got her last name right. Those words were ones I had spoken many times in the past, and a chill went right up my spine. I asked what it was again, and she said "Bongiovanni". I must have looked quite stunned and shaken, because she asked if I was OK, and I told her my maiden name was Bongiovanni! She practically screamed and called me an angel. She was so excited to meet someone else with the same last name. Then she called for her sister who was in a back room to come up and meet me too. We talked a bit and determined that we weren't likely directly related, but she still ended up giving me a generous donation. As it turns out, she spells her last name Buongiovanni, but the meaning is the same (the name means "Good John" in Italian). Her family came from the more northern sections of Italy, while my father's family was Sicilian so the dialects were a bit different. But until this moment I had never met another Bongiovanni in person like that who wasn't actually related to me. I have seen the name in print (rarely), and in high school there must have been someone with a similar last name who graduated a few years ahead of me because teachers often asked if I was his sister. But this was the first time, in over 40 years, I ever met an actual Bongiovanni. I don't know why, but I just felt so much better after that. She was so sweet and she kept saying I was her an Angel sent to her that day. Strange, because I actually thought it was the other way around!

The word "Angel" means one sent or messenger. I often say I have met many Angels on my journey that have smoothed my way somehow. Each of them had a message for me and taught me a lesson, and each of them probably never even realized they were an Angel at the time! I had a few days earlier a rather unusual encounter with an old friend whose son is in remission from cancer. We ran into each other at Trader Joe's, and chatted for a few minutes. I didn't think anything much of the meeting at first, though I was glad to see her and catch up for a few minutes. But later that night she sent me this email (names and details are omitted):

"I just wanted to drop you a note to tell you that I was so nice to run into you today. I believe that the universe sent you to me today. Please do not think I am crazy! I have been caught up in a lot of stupid stuff recently. [My child] has been having some trouble with the kids from school and the mothers have really been getting on my nerves. It is really stupid stuff, not even worth describing!!! You helped me to put things into perspective. You reminded me where I come from, what we all went through, what you [...] live with everyday. After I left you I went to go pick up [my son]. I told his teacher that I ran into you and that I was feeling better about the situation."

So you see, I actually did get to be an angel for a few minutes! I didn't even know it. I think it is like that with those who helped me out of the blue. They were answering a call they didn't even know they heard.

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It is late and I'm obviously tired and a bit delirious. First I wanted to leaven with the Peace Prayer of St. Francis. It had been in my mind a lot lately for some reason, so I think I should let it out. I went to St. Francis Prep High School, so we spoke or sang this prayer fairly often. Funny thing is, it isn't likely that St. Francis actually wrote it! It became called that because some Franciscan monks who helped popularize the prayer had written it on the back of a drawing of St. Francis.:

"Lord, make me an instrument of Thy peace;
where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

O Divine Master,
grant that I may not so much seek to be consoled
as to console; to be understood, as to understand;
to be loved, as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying that we are born to Eternal Life."

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My bald quote for the week:

"Babies haven’t any hair; Old men’s heads are just as bare; between the cradle and the grave lie a haircut and a shave" ~ Samuel Hoffenstein

Friday, March 7, 2008 7:11 AM CST

A third bone marrow drive for Jackie's is being added. So far, no matches. Please encourage everyone you know to get tested. They can call the number below for a kit if they cannot get to a drive themselves:

Our bone marrow drive details are below but if you are unable to attend then PLEASE call DKMS Americas at 1-866-340-DKMS or go to www.dkmsamericas.org to request a kit to be mailed to you.

Please note that it is a simple mouth swab to join the registry- NO BLOOD will be taken at the drives. IF you are a match to Jackie or someone else the National Bone Marrow Registry will contact you for further testing.

There are TWO drives next week in hopes of finding Jackie a donor, please spread the word!!!

TOMORROW!!!!:

March 08, 2008, 10am- 8pm
Farmingdale State College
Nold Building, Lobby
Farmingdale, NY

And now also:

Wednesday, March 19, 2008, 3-8 pm
Town of Babylon Town Hall Anex
281 Phelps Lane, North Babylon 11703

I will be sending an email with the beautiful flyer they have made up to everyone on my email list. I apologize as some will end up receiving this twice, because they are also on Jackie's list, but we need to get the word out. If they cannot find a match, Jackie's treatment options will be severely limited. Please hang this flyer wherever you can! The flyer is in PDF format, so if you can't open it, please email me and I will send you print copies.

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We have had a pretty quiet week here. Zachary has been well and going to school. I have been well and going to work. We had a great weekend with Zachary getting to play with his friends at Michele and Tom's. On Sunday, we had a last minute plan change, and Zachary and I went to a great birthday party! Zachary had a ball running around with lots of kids and jumping on the trampoline and playing basket ball. Oh.... and the highlight of his night, the birthday boy let the kids play with his new Game Cube game... Guitar Hero! A big hit with Zach as you can imagine!

We are excited about another big prize to raffle off at our St. Baldrick's event. T. Carlton's Spalon in Smithtown sent a $400.00 gift certificate for spa services! We are currently at 50�f our goal for the event, and it hasn't even started. We've gotten some response from the school district letters that were sent too! It looks like it is going to be pretty crowded there. Dix Hills school district also agreed to send out flyers. If you get a chance, click on the St. Baldrick's link or go to www.stbaldricks.org and look up Fritz Weess. I put a great photo of him and Kendall there. Fritz, Kendall's grandfather, will be shaving his beard in Kendall's honor. I know this his a head shaving event, but Fritz has worn this beard for over 50 years.

The fundraising has been exciting, though tiring. It is really helping me to keep positive, event though as Easter approaches it gets harder and harder. Everytime I hear the bell choir in church, I get a wave of sadness and loss. I can't get it out of my head how happy Kendall was to get out on Easter Sunday, after spending two months in the hospital, and the beautiful smile on his face as he listened to the bells. He turned to me afterwards and just said "The bells are so pretty mommy." They definitely are. The photo at the top of the page was taken on April 6, 2007, just a week before Kendall died. He certainly didn't look all that sick at the time. We were planning on some other treatments and happy to see him improving and looking well. It was a few days later that we learned of just how bad things really were. Everything happened so quickly from that point. But the day of the above photo was a good one. Kendall was doing Egg Hunts around the room and having a great time. Lots of laughter that day. I remember a funny story from that day that I will share with you again. I am coping this from his guestbook entry of Saturday, April 7, 2007. I wrote it the day before Easter:

"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!"."

It is good reading back in my journal sometimes. I am so glad I kept it and have a record of so much of our lives. I almost forgot that story, until just the other day when we were cleaning out a toy chest and found a "dinosaur egg" .. it was one of the ones that Zachary had brought back from his egg hunt at the Dinosaur Walk Museum. Zachary excitedly opened it.... which took a lot of effort as these eggs are really hard to open for some reason... and found it EMPTY! The look on Zachary's face was different from Kendall's, it was more of a sad and disappointed look, but I couldn't help but laugh anyway. I told him the story of Kendall's empty eggs and he laughed too. He said he thinks Kendall hid that empty egg for him to find. I agreed.

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

In the middle of writing this journal, I had to drop Zachary off at school. Normally this is a pretty uneventful thing now a days, but every now and then, the grief hits me like a ton of bricks. The twins that he takes the bus with, Brenda and Brissa, were there with their mom and her baby. I was admiring their little brother, who is now an adorable six month old. The girls wanted to show him off to their teacher. Zach ran off to class, and just as I was about to leave, I heard their bus monitor exclaiming to the twins' mom "I just love these two, they are so adorable! Twins are just so special. They are my favorites." I literally had to run out of there and balled my eyes out in the car. I could hardly drive home. The monitor didn't say anything wrong.... that was the kind of thing I used to hear all the time when I'd be out with my boys. But it just hit me again how much I lost and how much I miss my son, and my "twins".

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On a happier note, the prayers, and amazing medical team up at Vermont, seem to be working for two of my cancer warriors! Please read the updates on Austin and Katie. They are both doing amazingly well considering how bad they were a week or so ago. Please keep Jackie (see above) in your prayers as well, and please spead the news about her marrow drives. It only takes a minute. For those who live in other countries, I think you can be considered as well. Contact DKMS Americas, or World Marrow Donor Association (WMDA) to register. You may save Jackie, or someone else who desperately needs your marrow. The need for people of different races and heritages, and especially those of mixed races, is critical. The following is a list of those that they are in most urgent need of to donate:

* Black and African American
* American Indian and Alaska Native
* Asian
* Native Hawaiian and other Pacific Islander
* Hispanic and Latino
* Multiple race

Please get the word out!

***************************************
I found the following quote while looking for some cute quotes about baldness:

"The hair is the richest ornament of women." ~Martin Luther
"Sadly, Mr Luther was mistaken. Women have a lot more to offer than their shiny locks of hair."

Funny thing is, Martin Luther is the founder of my religion and Thrivent Financial is sponsoring the event and making a matching donation. See how far we have come in a few hundred years!

Friday, February 29, 2008 10:11 PM CST

I have some updated information on Jackie's bone marrow drives:

Our bone marrow drive details are below but if you are unable to attend then PLEASE call DKMS Americas at 1-866-340-DKMS or go to www.dkmsamericas.org to request a kit to be mailed to you.

Please note that it is a simple mouth swab to join the registry- NO BLOOD will be taken at the drives. IF you are a match to Jackie or someone else the National Bone Marrow Registry will contact you for further testing.

There are TWO drives next week in hopes of finding Jackie a donor, please spread the word!!!

March 06, 2008 3pm - 9pm

Lindenhurst Middle School, Room E119

350 S. Wellwood Avenue

Lindenhurst NY 11757

March 08, 2008, 10am- 8pm

Farmingdale State College

Nold Building, Lobby

Farmingdale, NY

*** Jackie is of South Asian descent but she could virtually be a match from anyone so PLEASE spread the word... we need people on the registry!!!!

I have some great flyers too, so if any of you can post one at your office or school, it would be appreciated. Email me for a flyer.

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

Update on Felicia: After spending quite a while at the Long Island Veterinary Specialists Center (LI's Version of the AMC), and not to mention a significant amount of money, it turns out that the hideous growth on my cat's face may actually be a reaction to the Tapazole she has been taking for the last few months (that is the thyroid medication she is on). It this is the case, then we would not be able to use that medication any more. Medical options are limited for the thyroid condition.... the most likely choice being radiotherapy. You do not want to know what that would cost. The only thing I can say is that would be cheaper than surgery. Anyway, my poor kitty is feeling fine otherwise.

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

Cindy and I had the chance to meet with a nice young reporter intern named Amanda. She is interesting in our story, and in the St. Baldrick's event. Hopefully her paper will publish it. I am also hoping to hear from some other medial sources as the event gets closer

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

I'm tired now and I have to get some sleep, so I'm cutting this one short. Good night all.

Thursday, February 28, 2008 10:00 PM CST

The photo above of my boys with balloons on their heads was taken on February 22, 2007, just a day or two before Kendall went into the hospital for what would be his last time. I remember that day well. The boys were having a great time playing with some of the toys in a care package sent by my friend Kim, who we met at CHOP. Her son Ryan has been doing very well, and is currently off treatment and being monitored. However, this horrible disease doesn't let them relax, and he will be monitored closely with frequent testing. I remember when we went into the hospital that last time. Kendall was so happy to be back on the 11th floor - "His Floor". He couldn't wait to see "His nurse" - Jinja and go to "His Room" - their transplant room. He was so full of life and hope. His condition was just starting to deteriorate. We were also hopeful... so hopeful. It is hard to believe a year has passed since that time. It is hard to think about Easter, which is coming up quickly. Last Easter was very special. It was the only time Kendall left the hospital, from that day in February, until the day he died - April 11, 2007. He had been feeling better leading up to that day, but took a dramatic turn for the worse and almost didn't make it out for Easter. But he rallied enough, and the doctors took a chance, and gave us the pass. He didn't eat the breakfast, but he listened to our church's Bell Choir play with such a sweet smile on his face. He turned to me after and said "I like the bells". He listened intently to the readings and seemed to drift off for a bit, then abruptly asked to go back to the hospital. I could see he was getting uncomfortable, so I immediately complied. A dose of pain killers, and he was back downstairs hunting Easter Eggs in the lobby with the other hospitalized children. I don't even know why I am writing about this now. Sometimes, my mind just gets stuck in replay mode.

Today I took Felicia back to the vet to have him look at her face again. I brought her in last Friday during the snowstorm, because she had what appeared to be a small wound on her face. It started the night before as a little tiny - pimple-sized lump on the side of her face. The vet gave us some antibiotics and shaved the area. We thought maybe she poked herself on something sharp. I actually thought it was getting better, as it scabbed over and didn't look all that bad. But when we got to the vet's office and I took her out of the carrier, the scab had fallen off (she must have been rubbing her head against the carrier bars), and it looked really ugly underneath. He is pretty sure it is a tumor of some sort. The fact that it grew from a tiny pimple to an ulcerated mass the size of a nickel in less than a week does not bode well for her. It is in too difficult an area for my vet to remove, so tomorrow I will be taking her to see a specalist (you don't even want to know how much it costs and it doesn't matter anyway). Felicia is about 15-16 years old, but she is otherwise a very healthy and happy cat. Now that we have gotten her thyroid condition under control, she has been feeling great, and I just hate the thought of her having something horrible like cancer. She is such a good and loving pet. Felicia laid on my stomach the entire time I was pregnant. I swear she knew I was pregnant before I did! When the children were born, she was fascinated, but a bit scared of them. But she was always very tolerant and gentle and the boys loved to stroke her soft fur and feel her soft paws. She is a good cat and I have to at least consult with the specialist to see what they think, if anything, can be done. I know she is just a cat, but she is still a member of our family and it still hurts to think of losing her. Maybe it will turn out to be something minor and localized.

This is turning out to be a very depressing update. This is kind of sad, because I have been fairly upbeat lately too. Our St. Baldrick's event is coming along well. We have a DJ, and some fantastic prizes to raffle off, and Cindy just got permission to send our flyers home with the students at the schools! They were also sent home with students in Deer Park near the event. We are supposed to go on an interview with a local reporter tomorrow, and hopefully she will give the event a nice write up.

Please keep Austin in your prayers. They got some good news on his scans, but he still feels really horrible and is suffering with fevers and pain. Pray that this can be brought under control quickly, and that a new treatment can be tried. Katie is still fighting, though she also isn't feeling so great. More prayers! And don't forget adorable Jackie who is still struggling with relapse chemos. She had another intrathecal today (where they inject the chemo directly into the spinal canal).

Please get the word out that there will be a bone marrow drive for Jackie Poegel. It does not hurt to get tested, it is just a cheek swab.:

Farmingdale State College
Nold Building, Lobby
March 8, 2008 10 a.m. - 8 p.m.
Farmingdale, NY

*** Jackie is of South Asian descent but she could virtually be a match from anyone so PLEASE spread the word... we need people on the registry!!!!
Please note that those joining the registry must be willing to donate to anyone not just Jackie. For details on what is involved in being a donor please go to www.marrow.org

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"You can keep a dog; but it is the cat who keeps people, because cats find humans useful domestic animals." - George Mikes

Saturday, February 23, 2008 11:17 PM CST

Please get the word out that there will be a bone marrow drive for Jackie Poegel. She is a very sweet girl with relapsed AML leukemia. We met her family through the Morgan Center. I have already registered as a marrow donor, but I will probably be at the event at some point to volunteer. It does not hurt to get tested, it is just a cheek swab.:

Bone Marrow Drive Details (Please spread the word!)
Farmingdale State College
Nold Building, Lobby
March 8, 2008 10 a.m. - 8 p.m.
Farmingdale, NY

*** Jackie is of South Asian descent but she could virtually be a match from anyone so PLEASE spread the word... we need people on the registry!!!!
Please note that those joining the registry must be willing to donate to anyone not just Jackie. For details on what is involved in being a donor please go to www.marrow.org

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

Zachary has been feeling better, though he did get an ear infection this week! I took him to my boss and he really liked him. He is very funny. Anyway, a we caught it early and a few days of antibiotics and he is good as new. Overall he had a good week. He spent some extra time playing videos and shopping for electronics with Neil while I worked this week. On Wednesday he went to Cindy's who was nice enough to watch him even though her son was sick (and, later, so was she!). He managed not to catch this particular bug which is good. On Friday the snow started! It was very exciting. We haven't had a decent snowstorm that Zach could get out and have fun in for the last two years. He outgrew his sled, and I had to run to Walmart to get a new one. We had a great snowball fight while I cleared my driveway (Neil had to work... but I think I got the easier job... he had a two-and-a-half hour ride to work that day!). Then we built the snowman seen above. We named him Twiggy because his arms, eyes, ears (yes, Zach included ears) nose, mouth and mustache (Zach again), were all made of sticks and twigs we found. Zachary topped him off with his own hat! It was really fun.

The Wedge Park was perfect for sledding! There were hundreds of kids there and there are plenty of great hills to choose from... from the very steep, to the much gentler. Zachary must have made 30 runs up and down that hill, and I even made a couple myself! I hadn't gone sledding since I was a kid. It really is great fun. I have some video clips, but I took them with my phone so the quality isn't great. I'll post one of them above. As you can see, he really went flying!

We hung out with Kathy and Jessica later on, and the kids had a nice time playing together. We keep missing our playdates with friends due to one illness or another. Hopefully that will improve as the weather does. Saturday was kind of boring as I fell asleep after work! But Zach played with Neil, then we went to the mall and ate junk food in the Food Court, and Zachary played on the Reatrix spot for a while.

I just love watching him play with the other kids, but it makes me so sad that Kendall isn't here too. He loved the snow and winter, and he would have had such a great time flying down that hill. Zachary feels it too and speaks of him often. It is usually pretty matter-of-fact, but I can hear his pain and how much he misses him. I remember how the boys used to love to fly down my driveway on their tricycles, crashing into me (I was protecting my car that blocked the end of the driveway!). I know he would have really enjoyed going down that hill. The only sledding Kendall got to do was one winter on my front lawn we made a little hill. He was so little then. It was exciting for them because they hadn't really played in the snow before. I may have some photos, I'll have to look.

You can make yourself nuts with such constant talk of what your Angel didn't get to do. I try hard to focus on what he did get to do. The opening photo on top was from the last day at Give Kids The World where he got to ride the horses. He was so proud of himself for getting a certificate and hat!

Anyway, we have some exciting news for our St. Baldrick's event. Cindy managed to get four tickets to Disney to raffle off! That is to any of their parks! We have some really great baskets as I said. I have had some nice donations, and I am very grateful for all of them. I'm very excited and feel that it will be a lot of fun.

I have to get some sleep now. Please keep all of my young friends with cancer in your prayers.

Saturday, February 16, 2008 5:16 PM CST

I wanted to leave the link to the Pat Brophy Interview up a little longer for those who may have missed it. You can read my tribute to her in the journal history.

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I was checking our St. Baldrick's page, and noticed that we hit the 25�ark of our goal for the event! Not bad. Cindy has been doing an awesome job of soliciting for the event. We have some great raffles, including a birthday party at United Skates, and Dorney Park tickets! There are a lot more too. Cindy and I hit the local Deer Park area yesterday, and got some nice donations. We also enlisted the help of the Deer Park Fire Department, and the manager said he would get some of the guys together to shave for us! I certainly hope so, because we would really like some more shavees. But even if not, we did make some progress. As I said, the basket raffles are going to be nice, and we got some cash donations too. We are going to have tee shirts made up for the event as well. We are working on getting an organization to donate the tee shirts. Oh, and Cindy found us a DJ, so there will be music, and games for the kids (no inflatable bouncer though.. apparently it is too big for the event and the foundation doesn't approve of them for liability reasons). We will also have more children honored in the event. I will hopefully have some photos of them soon and we can add them to the list. I want to thank everyone who has donated so far from the bottom of my heart. We are really enjoying setting this up and I hope that everyone will come and have a great time with us.

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Zachary has not been feeling well this week. He was sick with a fever and upper respiratory symptoms since early Tuesday morning. He missed the 100th day of school celebrations and Valentine's day. He did get his Valentines on Friday when I finally felt he was well enough to go to school. We didn't do much else this week. I am hoping he will be well enough to go to his Black Belt Club Monday class. We have missed the last three or four, and it is something he really loves to do. Not much else going on this week. Next week I am working and Neil will be home with Zachary. Hopefully he will plan at least some fun things with him.

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Please keep the beautiful Katie Krize in your prayers. She is have a tough time with the new protocol and they are waiting for test results to see which way things are going. I can tell you from experience, the waiting is absolute torture. Jackie seems to be responding to chemo, but she had complications with her broviac line requiring a second surgical procedure. She is feeling pretty crummy I'm sure, so send some love and prayers her way as well. Also, keep Austin Melgar and Tyler Stolp in your prayers.

Wednesday, February 13, 2008 8:00 PM CST

It is with great sorrow that I have to share with you the passing of a truly wonderful woman, Pat Brophy.

Pat was the nurse practitioner at CHOP that I often raved about, as did most of her other patients. She was one of the most caring, kind and dedicated professionals I have ever met. Most of the oncology nurses are fantastic, so to stand out in this crowd is a true achievement. She took complicated testing and medication schedules, and found wasy to make them easier for the parents. It's funny because she was so dedicated to us, I often forgot she had other patients... until I ran into one of them who also sang her praises because she got them the medication they needed, or re-arranged the radiology department's schedule for them, figured out a way to have something sent by mail or done at their home hospital, or just sat with them and gave them support during a particularly difficult time. She improved the quality of life for these children an their families in immeasurable ways. It was one of the things that made being treated in another state bearable. More than once she rescheduled an exam or test, just so that Kendall could attend a special party or event. I always knew I could call or email her with any problem or issue, and she would be right on top of it. I always felt I could call on Dr. Maris (the head of the NB team at CHOP) as well, but often it was Pat that we turned to to field the day-to-day issues. I will never forget her hugs, or warm smile, or tears at the bad news and joy at the good.

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Angela shared some really nice thoughts about her, a lot more eloquently than me, on Christi Thomas' blog. I hope she doesn't mind my copying them here. They were from back when we first heard about Pat's diagnosis. I feel that the story she shares really sums up the kind of things that Pat did to make her patients and their families feel like they were truly special:

(note, this starts with a link to a video that they used during Alex's Lemonade Stand Phone Bank when they told of Pat's own diagnosis with cancer. Kendall, Zach and I are seen briefly in the beginning of the video.)

Pat Brophy Interview

Another heartbreak caused a lot of tears last week. It was learning that Christi's dear, dear nurse - Pat Brophy (We often referred to her as Dr. Maris's partner and right hand woman.) was diagnosed with cancer. In this video clip, (click on the center for the five minute video to start) Pat is also with the recently deceased Kendall, his twin brother Zachary and sweet mother Aimee. Just seeing and hearing Pat's voice was enough to bring me to tears, but then to have her talk about her own battle with cancer made me weep. Our prayers are with Pat and her family.

PAT BROPHY - NURSE EXTRAORDINAIRE!

The great Pat Brophy will never know how richly she blessed our lives! On Shayne’s very first trip to CHOP with Christi, in 2003, he met Pat for the first time. When he called me later that evening he was raving about this incredible nurse. Soon after, I met her myself and could easily understand why he gave her such a glowing report. I also always found Pat to be bright, professional, efficient, and one of the most compassionate women I’ve ever had the pleasure to meet.

I will never forget her kindness, especially when Christi relapsed and was in pain in January of 2006, and also when she arrived with the team about 20 minutes following Christi’s death saying, “No matter how many times I do this, I never know what to say.” Nor will I forget her remarkable ability to keep calm and professional, when I was everything but! One incident stands out in my mind in particular because of how upset I was (although she probably didn’t know it) and how calm Pat remained, despite my distress.

Date: March or April 2006
Location: Day Hospital
Pat: “What are we going to do?” (Regarding the fact that it was Friday and Pat had worked her fingers to the bone getting a one time shot approved and available for Christi, but Christi would have to receive it at the Ronald House on Saturday. Pat did not know Shayne had given Christi every single shot, he was home with Shayla and I was not about to ever give her a shot, period.)
Angela: “I don’t know. Figure it out. I’m going to go get Christi a sandwich. That's something I can do.”

When I cooled off and came back, Pat had once again waved her magic wand and had arranged for a nurse to arrive at the Ronald House for Christi on Saturday. (In reality, Shayne flew in because he missed Christi terribly and knew she wouldn’t want anyone but him giving her any shots.) I will never forget Pat going all out for us like she did that day – and countless other days.

Trying to work full time, go to school part time and also take care of a child with a terminal illness (and be a wife and a mother to a health kid) probably didn’t make me the most pleasant person to be around at times, especially when it came to scheduling Christi’s care. Pat would kindly arrange Christi’s many tests/appointments and I’d sometimes respond, “That doesn’t work for me. How about ……..” That angel on earth would work her hardest to try to ensure Christi’s care while allowing me to try to live a life that I knew had to go on, with or without my daughter. My most treasured times with Pat were not of talking about Christi’s care, but of talking to another working woman about my career and my students. I’ll forever be grateful of her kindness, professionalism and friendship. What a blessing she is to all who know and love her! Gooooooooooo, Pat - truly a hero!!!

posted by the Thomas team @ 6:14 AM 10 comments links to this post

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I checked, and the video of Pat is still up on CBS3's website. It is the second video on the list that comes up when you click on the link. It is titled "A Stand for Hope: Pat Brophy" in case you can't find it right away.

I was absolutely stunned this morning when I got a call from Dr. Maris himself telling me of the terrible loss. What better testament can you get to how much this woman was admired, respected and loved. Dr. Maris took time out of his very busy schedule to call many of her patients and former patients it seems. Again, it just proves even more what a great place Children's Hospital of Philadelphia is.

Please keep Pat's family in your prayers. I know she is enjoying a well-deserved and peaceful rest now, and I am sure she is in Heaven with Kendall, Christi, Alex and all of her Angel Children.

Saturday, February 9, 2008 8:49 PM CST

I am sad to report that Ian was found to have committed suicide. Please pray for his family, especially his two small children, a six-year-old son and a one-year-old daughter.

In other sad news, another little girl has relapsed with leukemia. Please send your kind thoughts and prayers to Jacqueline Rose and her family. She is treated at CHOP in Philadelphia, but her family lives on Long Island. She has two older sisters, and it is so hard for the family to be apart again. I know they miss their mom and sister, please keep them in your prayers too. Jackie will need a transplant, and they do not have a match within the family, so they will be searching for a bone marrow donor. She is half Caucasian and half South Asian, so it will be difficult. I will post info on where you can sign up to be tested as I get it. I am already on the bone marrow donor list, and I certainly hope I can encourage EVERYONE to get on the list as well. I have a coupon to cover the costs of the testing, and if you go during one of their special drives I think they wave the fee anyway. More information can be found at National Marrow Donor Program.

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Zachary is feeling better and has had a great week. We enjoyed a relatively quiet and healthy SuperBowl Sunday at Tom and Michele's. It is always great to be around friends to eat, drink and watch TV. Michele did a wonderful job of preparing healthy munchies for us (Sorry for the mess!). Zachary didn't really watch the game much, but he loves playing with his friends Connor and Jessica, and he is always fascinated by little babies. Jake seemed to enjoy his first Superbowl party too! On Monday, we went to a book reading at Starbucks, and Zachary really enjoyed helping to set up and clean up the room. He made a very cute Valentine mouse for me and Neil.

Zachary also got to spend some extra time with Nonni and Poppy this week, as it was Neil and my 8th wedding Anniversary on Tuesday. We had a great dinner out at Pace's Steak House. Neither of us can remember the last time we went out to a nice restaurant together! Even with all the problems and sadness we have had, I can honestly say it has been a good eight years. I am glad that I didn't have to go through the horror of having my child be diagnosed, and ultimately die from cancer alone. On Thursday night we met Josette and her girls at the mall, and had a nice dinner while the kids ran themselves ragged in the play area.

So it's been a busy week. I am starting with a cold or possibly my allergies are hitting early (I think cold though, as Neil had it last week). I'm getting to bed early tonight and we will hopefully make it to church on time. I am supposed to make sure the coffee is set up this week.... a good job for me!

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Our St. Baldrick's event is scheduled for Saturday, March 22, 2008 from 6-9pm (or maybe 10?) at Spectacular Eastside Parties. It will be a fun, family event to which you can bring your children if you want. Please register to shave or volunteer online if you want to help. Feel free to call Cindy at 631-696-6575. Click on the link above and look up our event or our names or Kendall's name.

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I wanted to share an essay written by a fantastic 12-year-old boy named Spencer Dolling. His story is an interesting one, and his father's journal writings are truly amazing. They are funny, touching, ironic, sometimes shocking, and occasionally disturbing. At the bottom of the website (click on Spencer's name to get there), you will find links to an unedited interview with him about his visit to the blood donor center this Christmas, and an AMAZING photo essay narrated by Spencer himself. Here is Spencer's essay:

"12 Year old Vampire Says Thanks

My name is Spencer Dolling and I am a 12 year old vampire who lives in Port
Coquitlam. I have been fighting a cancer called stage 4 Neuroblastoma for 6
years. The treatment that I have affects my bone marrow and I need lots of
blood transfusions. I have had around 300 blood transfusion in 6 years.
This came from 450 different donors.

Out of the 300 transfusions, about 110 have been platelets. Platelets are
blood cells which help with clotting to stop bleeding. During all my years
in treatment, my bone marrow has become weak and this year in particular, I
needed about 50 platelet transfusions.

The other kind of blood I get is called packed red blood cells. It contains
haemoglobin that carries oxygen. If your blood does not contain enough
haemoglobin you can barely climb a flight of stairs and you will look very
pale.

A couple of months ago, I went over to the Canadian Blood Services clinic on
Oak Street to see how they got blood from people. I found that it takes
about an hour to donate whole blood. The whole blood is later divided into
red cells, plasma and platelets for different patients. Whole blood can be
stored for several weeks. If they do not have the type of blood that you
need they can get it from another province.

Some people just donate platelets. A special machine uses apheresis that
picks out the platelets out of your blood and then gives the other unused
blood back to you. It takes about two hours to donate platelets. Platelets
can be only kept for 5 days.

I also found out that the people who donate blood come quite often and spend
lots of their free time giving blood. I had never thought about it before
but I now wonder what they get in return. I decided to make them a
Christmas card to thank them. I mean really if you think about it, they've
saved my life only about 300 times.

Canadian Blood Services in BC gets about 110,000 blood units donated a year.
At this time of year people are really busy and sometimes forget the need
for blood in the blood bank. This year over the holidays they will need an
extra 1,200 units of blood donated to meet BC's needs. I think that we
forget that blood isn't just used for car accidents or surgeries. It is
used a lot for cancer patients like myself.

Blood is really important to me and my family so I can do simple things like
go to school, play outside, or just stay out of the hospital. Maybe I'm
not really a vampire, but I would like to thank the people who give their
time to donate blood and even those who are now thinking about it."

Saturday, February 2, 2008 6:54 PM CST

Happy Ground Hog Day everyone!

I wanted to urge everyone in the TriState area to be on the lookout for my friend's nephew. They have sent up a blog for Ian, please check it out. There is a new photo of him with his son. He has been missing for two weeks. His car was found at Planting Fields Arboretum in Oyster Bay, New York.

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I want to put up a link to a You Tube video put together by Mark Dungan as part of a fundraising tribute for Molly Holloway, a beautiful young NB survivor who has been inspiring her classmates to raise money for cancer research. Dance 4Life is their most recent fundraising venture. These kids are really amazing. The video is very touching (have the tissues ready) and beautiful. Kendall is not featured on this one, but there are many children I know.

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Zachary seems to be feeling better, and actually he had a pretty busy week. He went to school a half day on Tuesday, and to his Ninjutsu class on Tuesday evening and Friday evening. On Thursday, I took him for a MUCH NEEDED haircut. Earlier in the day, I stopped by the Kid's Cuts in Centereach, the place where both of my boys usually had their hair cut, and the very kind owner agreed to post a flier and poster for our St. Baldrick's event, and even put up a collection jar with a picture of Kendall right after his last haircut! This was taken with my cell phone, but as you see, he really looked great then. You can really see his dimples in this one. It was sometime in September of 2006:

It is such a cute place. Behind him, is the play area. He is actually standing on one of the wooden trains. That large brown thing in the background is a huge plaster tree with a tunnel. He loved crawling through it and hiding in there. We only got to go when his counts were really good, but it was always worth it. Often, he didn't have hair to cut, but he would come and play while Zach went if his counts were OK. Zachary is really missing him a lot lately. He talks about it often. On Friday when Gia and Faith met us at McDonald's for a little while, it was the first thing on his mind. I'm glad he is able to express his feelings, but sometimes it is really hard because I can't do anything about them but listen.

Later on Friday he played with Jessica and Paige, so it was a real girly night for him! But he had fun. We had lunch today with our friends Tom and Michele, and their adorable almost four-year-old Connor, and their equally adorable newborn Jake. I held Jake all through dinner. He is such a wonderful little baby. Zach was like that when he was a baby, just very calm and relaxed. Kendall was always the feistier and more high-strung of the two. But they were both really great babies too. It was so nice having twins.

Anyway, I wanted to update everyone on our St. Baldrick's event. Cindy is doing an AWESOME job of fundraising and collecting donations for raffles. We already have some great prizes. I am seriously lagging in both areas. One of the problems is I am not really all that comfortable asking people for things. It just isn't my nature. But I'm going to go with Cindy on one of her business runs as soon as I have a day off with decent weather (yesterday was torrential rain, and Wednesday was not much better). I am sure once I spend some time watching her techniques, I will be able to do some on my own too. As it was, it was hard for me to talk to the lady at Kid's Cuts, and I have known her for over five years! I did manage to talk to the owner of Zachary's ninjutsu school, and Kyoshi Allie has agreed to post fliers and posters at all his schools, send out information in his email newsletter, and has offered a generous donation of club memberships for our raffles. I'm starting to get excited (and a little nervous!). I'll be sending out a mass email soon, so don't be surprised. I am just sending them to everyone, so for those who already know about it, you can disregard, and for those who have already donated, THANK YOU from the bottom of my heart. I will send thank you emails after the event (can't promise letters, I still haven't mailed the thank you's from Kendall's funeral... but I promise to send them shortly... they are mostly just sitting right here on my desk waiting for stamps.).

I've never been good at cards, but I am always grateful for my family, friends, and the many angels-on-earth who have supported me and my family over the years. Some of these people I don't even know and have no way of thanking. It is the main reason I donate platelets often. I have trouble donating red cells because I just don't recover them quickly enough. But platelets I feel fine right afterwards. I feel it is my way of thanking the many people who donated blood and platelets to my son, and the many people who helped us anonymously. So if you are one of those people, you can be assured that your kindness and/or generosity is being paid forward.

Anyway, our St. Baldrick's event is scheduled for Saturday, March 22, 2008 from 6-9pm (or maybe 10?) at Spectacular Eastside Parties. It will be a fun, family event to which you can bring your children if you want. We are hoping for more shavee's, but we will be happy with whatever we get. Please register to shave or volunteer online if you want to help. Feel free to call Cindy at 631-696-6575. Click on the link above and look up our event or our names or Kendall's name.

I only plan on doing this once, and hope to raise a significant amount of money in Kendall's honor. But even if I don't raise another penny, it will be worth it. This has been what is keeping my spirits and up keeping me positive. It helps me to cope. I still cry almost every day, but I recover quickly remembering how much his life meant to others and how many people loved and admired my son. I try to focus on the happier times we had, and I barely remember the bad days (or I block them from my memory if you prefer). This is better than any therapy I could get. I will likely hold some sort of event annually in Kendall's honor, but I think I will keep it to once a year. I am NOT likely to shave my head a second time, but you never know.

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Tomorrow is the first Sunday of the month, and therefore our healing service at our church. I will be especially praying for my son's fellow cancer warriors: Alexa, who is celebrating her first clean scans after treatment! - May all the rest be the same; Austin , who has progressed again and is now embarking on some very radical new treatment plans; Katie, who is also on new treatment, and having a rough time with the side effects. Brandon, who is struggling with fevers and neutropenia; Anna who has progressed and is starting new treatment; Jackie who has had some unusual counts lately and we just pray it is not a relapse; and all the children from The Morgan Center. I have just met so many children with cancer, and others I have followed through their online journals and emails from their parents. It is so heartbreaking. This is why even though it is too late for Kendall, I cannot stop fighting for a cure for the many other children like him out there. Each and every one deserves a chance to live a normal, healthy life. Each and every one will break your heart if you get to know them. There are more of them than I can possibly name here, but God knows who my heart prays for, and I try not to miss the healing prayers. I would also like to include the devastated family of Kendall and Zachary's friend Drew. Their pain is still very new and scary, and I can only pray for peace and comfort for them right now.

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The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning. . .
- Lamentations 3:22-23

And I am sure that he who began a good work in you will
complete it.
- Philippians 1:6

Sunday, January 27, 2008 11:17 PM CST

First of all, thank you to Nancy for the new photos! I just love getting new pictures. I have a few others that aren't in digital format that I have to find time to scan in so I can post them.

Zachary is actually sick. I know, it is almost unbelievable. he hasn't had a fever in so long, I can't remember. I think it was about a year ago. He is otherwise feeling fine when the fever is brought down with some tylenol or motrin. It seemed like he was going longer between doses today. Hopefully he will be well enough to go to school tomorrow. The kids are going on a school trip to a play and it sounds like such fun. Needless to say, we haven't done much this weekend. I'm kind of wiped myself, and hopefully I am not coming down with whatever it is.

"While I've been home, I have been working on the fliers and other documents for the St. Baldrick's event. We now have some large posters as well. I have a bunch printed, and I am starting to make up donation jars to place in businesses (anyone have a place that would allow us to put one... let me know!). I've also been working on a media list. I have some press releases made up, but I have to talk to the local coordinator before sending them out. I should be able to get to this this week. I have to say, it does feel good to be DOING something.

I went to the cemetery the other day, even though it was freezing out! I brought some flowers, even though I know they will freeze and not last long. Mom's evergreen arrangement was still there, but the flowerpot filled with pine branches and artificial pointsetta's had blown away in the wind. I found it nearby, and decided to try and pull the plants out and put them into a cone that I could push into the ground. Well, those were kind of frozen too, and I kind of mangled the whole thing, but I managed to put together a reasonably attractive arrangement. As I was pushing the cone into the very frozen ground, a small glint of gold color caught my eye. Right in the middle of his gravesite (not where the marker is), there was a small, plastic, gold guardian angel. This came from the Christmas arrangement I had placed there that I found all torn up on Christmas day! I've been back several times since, but never saw the little angel. Of course, at times it may have been under snow or something. But there it was. I remember at the time, I was talking to Kendall about Drew and asking him to take care of his friend. I picked up the angel, and put it on the bow attached to my mom's arrangement. I thought that would be the best place for it.

Another odd thing happened then, that could only be another sign. I was starting to talk to Kendall about the St. Baldrick's event. I remembered that he didn't want me to shave my head when he was alive, and that had been bothering me a small bit. I was just asking him to understand how important it was for me to do something to raise money to help other children like him. Suddenly, something fluttered across his grave marker. It was a small brown moth. I thought it was dead at first and the wind had blown it over, but this one was ALIVE! It was crawling and somewhat fighting the wind. It made its way to the frog and sat on its head for quite a while. Then it slowly crawled off the marker and stayed still in the grass. It was astonishing to say the least. I mean, it was FREEZING out! I had to use my heal to bang the cone into the frozen ground! And here was this little brown moth with pretty markings crawling around.

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"The angels are always near to those who are grieving, to whisper to them that their loved ones are safe in the hand of God." ~Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman, 1994

Wednesday, January 23, 2008 9:48 PM EST

I'm leaving the previous post up so people can see the flier. I actually have three fliers now, one with info on Kendall, one featuring Alexa, and one with both children. I also have business cards, small general pamphlets (I need to make some more stickers up for these), and large posters. I'm going to get some jars to place in businesses tomorrow on my way home from work. If anyone has a place they would like to put a jar, sign, flier or poster, please email me and I will get them to you.

We do need some help at the event, so go onto the event site and sign up to volunteer. Of course, we would love more shavee's... but we fully understand that no everyone is ready to give up their hair. We could really use an Emcee for the event. Any suggestions would be welcome. Also if any of you have any media contacts, send me the list and I will send out our press release (that sounds so official...it is basically a shorter version of the flier below). We will be doing a raffle, so any donations of new goods or services are welcome too.

Keep checking back for more updates and photos, but that is all for now. Thankyou!

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Sunday, January 20, 2008 9:48 PM CST

We're really gearing up for our St. Baldrick's Event now. We finally got some of the promotional materials that we need to hand out, and I made up some business cards and fliers. Anyone who has a place we can post fliers or signs, or otherwise advertise the event, let me know and I'll start sending out some things. Here is the basic layout of the flier (minus the St. Baldrick's letterhead... I couldn't get that to copy properly, so this is just the middle text and photos:

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These are the ones with just info and photos of Kendall and me. I also will be making a similar layout for Cindy with photos of her and Alexa (she is shaving in Alexa's honor, and if/when we get more shavees, we will try to match them up with other children to honor at the event.). I will also be making some fliers that combine the two of us with photos of both children and contact info for both. This way we can use those for more general posting and publication. I just did this really quickly at Josettes house today using photos we already had. OK... maybe not so quickly!

Anyway, many thanks to Josette for again lending me her computer and I have yet another "NEW" photo of Kendall and Zach to share up top! Also I must thank another dear friend, Mary Ellen, for sending me some beautiful photos of Kendall and Zachary. I will try to scan some of the best ones in so I can post them. I never get tired of seeing photos of Kendall, so if you have some hiding in the bottom of your draw or on some forgotten clip somewhere, don't be shy about sending them! I'll be happy to pay for processing or postage. Any pictures of me or my dad with the boys would be particularly welcome. I am sorry I didn't take more photos of them together. And of course, I was usually the one with the camera, so there aren't so many pictures of me. But it is OK. I have such vivid memories sometimes.

The other day, when I was driving back from Drew's wake, I had such an odd sensation for a bit of someone kicking the back of my chair. Zachary wasn't in the car at the time, and it wasn't the kind of kicking he does. He tends to kick pretty hard and alternate feet (yes it is annoying!) until I yell at him to stop. But Kendall tended to kick more gently, and only use one foot. Then sometimes he would just push both feet against the back of the seat on and off. This sensation I felt was more like that. When I had the both boys in the car, Kendall's spot was always behind my seat and Zachary was next to him. This was mostly because that seat in the van was easier to get him in and out of if I had to lift him (like when he wasn't up to walking and jumping). The other seat was more of a stretch from the door to the seat. Also, if he felt nauseous in the car, I could get him to the open door faster on that side. I'll never forget how tough it was to take that second booster seat out during the first few weeks after Kendall died. I waited a bit to do it, but at one point I had to take them out to clean them anyway. I put Zachary on the side Kendall always used because it was easier to strap him in from there. We no longer needed the harnesses, because Zach had outgrown them. That was the other reason I changed their seats. Without the harness, you need to buckle in the seatbelts, and that wasn't possible with both seats on that short bench the way I had it. Had Kendall lived, I would have had to changed something in the way I set the carseats up. Either switched the short bench for the longer one and used both the end spots, or I would have had to put one child in the back row and left the other in the middle. I guess none of this matters now anyway. But as I was saying, on the way home, as I was driving on the SAG late at night by myself, I felt that sensation of gentle kicking and pushing behind my back. I guess that sounds kind of eerie now, but at the time it was a peaceful and reassuring presence. Or maybe it was just my sleepy mind playing tricks, or some sort of body memory. Maybe I hit some bumps in the road (it is under construction) and the way the seat felt reminded me of Kendall kicking me. Doesn't matter. The whole thing brought me some peace and that is all that counts. I hope everyone of you who has ever yelled at your kids to stop kicking you or whatever it is they do to annoy you, will just for today, give them a hug and thank them instead. It is kind of funny the things you miss when you can't have them anymore.

Anyway, we went to visit grandma Barbara today, and Zachary and I enjoyed a nice lunch at Cugini's. It used to be one of my very favorite pizza places. My dad loved it there too. We had many a nice meal there, and it was great to go back. The food and pizza is still the best. Zachary enjoyed the visit, except for her dogs. Max and Yogi are just the cutest little things, and totally harmless. Zachary likes Max, who is a quiet and sweet little Maltese, but the wild yorkiepoo Yogi scares him terribly!

Anyway, we are all doing OK for now. I'm going to try and get some sleep, as I will have to get up and work tomorrow (no holiday for us!).

Please keep another beautiful NB warrior in your prayers as she faces more challenges and setbacks. Anna O'Connor has endured over five years of almost constant treatment for NB. She is one of the few adults with this disease (though she was a teenager when diagnosed). Also, please remember Austin Melgar who is hopefully starting another protocol shortly, and Katie Krize who recently started a new protocol and new webpage.

Thursday, January 17, 2008 10:07 PM CST

I haven't felt much like writing the last few days. I'm just too tired. Drew's wake was Sunday, and his funeral on Monday. There were so many people there.... so many lives he touched. It is just heartbreaking. I've been trying to spend some extra time with his family. Please keep this wonderful family in your prayers.

Also add a few prayers for fellow NB warrior Austin Melgar. Recent scans show more progression. He is still fighting strong though. I do hope the doctors come up with some options quickly.

Also, please keep my friend Cindy (yes, the one shaving her head with me), and her family in your prayers tomorrow. It is the one-year anniversary of the death of her father. In a way, even though I have never met him, he is responsible for bringing us together. She had been meeting our church's pastoral intern, Vicar Josh, for counseling sessions to help her through the devastating loss, when Josh told her about our family. For reasons I don't fully understand, our story ignited a fire in her, and she put aside her own grief for a while to help us. Thomas Koyles (her father) was a proud Irishman, and I am sure the idea of St. Baldrick's would have really appealed to him. I think that is why it appealed to her. Anyway, I want to post the information that will appear in our church's bulletin. I now have fliers, and we are working on letters to send to local businesses. Anyone wishing to help organize, or help on the day of the event (don't worry, we won't force anyone to shave their heads!) please contact me or Cindy.

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HEROES SOUGHT TO PARTICIPATE IN HEAD-SHAVING EVENTS TO RAISE FUNDS FOR CHILDHOOD CANCER RESEARCH

What would you look like bald? Like a hero to kids with cancer, says the St. Baldrick’s Foundation.

The St. Baldrick’s Foundation has issued a lofty challenge to everyone who wants to help raise money for childhood cancer research: Be a hero for kids with cancer by shaving your head in return for pledges of financial support from friends and family.

Participants find that shaving their head in solidarity with the 160,000 children who are diagnosed with cancer each year is a small sacrifice in comparison to what these children endure, and want to raise money to help find a cure for children with cancer now and in the future.

Events will be held locally at Spectacular Eastside Parties, 10 East 5th Street, Deer Park New York. The head-shavings will commence at 6:30 p.m. on March 22, 2008. There will be indoor carnival games for the children and a basket auction. Two members of Hope Lutheran Church, Aimee Jackson (in memory of her son Kendall) and Cindy Merkler (in honor of Alexa Moore) will be shaving their heads.

About the St. Baldrick's Foundation

The mission of the St. Baldrick’s Foundation is to raise awareness and funds to cure kids’ cancer by supporting cancer research and fellowships. St. Baldrick’s began as a challenge among friends and has grown into the world’s largest fundraising event for childhood cancer.

Since its inception in 2000, St. Baldrick’s has raised more than $34 million for the cause, shaved over 46,000 heads in 18 countries and 46 US states! Worldwide, 160,000 kids are diagnosed with cancer each year and despite tremendous progress, cancer remains the #1 disease killer of children in the U.S. and Canada.

Want to help? Email Aimee at aimee1@optonline.net, or go online to www.stbaldricks.org and log in to Spectacular Eastside Parties venue. You do not have to go bald to help!

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I'm starting to come out of the depression a bit, but it is a long climb up. Somedays it seems better than others. Zachary is doing well all things considered. Neil is doing better too. I'm very proud that he has quit smoking. It has been almost six months now. He is now working on his diet and exercise. He joined a local gym and has been going. All in all, we are doing OK. We just miss Kendall so much though.

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"You don't think that you'll live past it and you don't really. The person you were is gone. But the half of you that is still alive wakes up one day and takes over again."
- Barbara Kingsolver

"What we have once enjoyed, we can never lose. All that we love deeply becomes a part of us."
- Helen Keller

"I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in lie appear much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough 'hellos' to get you through the final 'goodbye'. "

Wednesday, January 9, 2008 12:42 AM CST

It still seems so impossible that Drew could be gone too. For those who were wondering, I did tell Zachary yesterday. I really had to because I had already told my mom, and I just couldn't drop Zach off at her house to stay while I went to sit with Drew's family and not tell him. He wouldn't have understood why he was being left there, and why Nonni was so sad and upset. Zachary took the news well I suppose. He seemed concerned about Drew's brother Logan (who is about 2 and a half). His initial response was that he wanted to come with me to their house so he could play with Logan. I told him we'll do that another time when things settle down a bit.

To make matters worse, it really isn't known what happened to Drew. He was in treatment for leukemia, but was at the maintenance stage. He had been deal with some sort of virus for a couple of weeks, but seemed to be improving when a fever struck. He was at the clinic getting antibiotics when he collapsed. It could have been an extremely sudden sepsis, or a reaction to the medication, or something else. It is hard to say until further testing is done. Either way, it still is just horrible. His dear family is just so devastated and shocked. My heart breaks for them a million times over. I spent some time last night with my friend Josette going through pictures on her computer and downloading them to a nice photo frame with some music as a slide show for the wake. It wasn't so bad at the time, because we were focused on accomplishing a task, but those images of a happy, smiling, laughing boy with gorgeous blue eyes and such a sweet nature haunted me all night. I came across many new (well, old) photos of Kendall and Zachary too, so I'll have to get over and really mine through her files again. I just can't understand how this can keep happening. These children are so precious and sweet. Drew was a strong boy in many ways. His initial treatment had caused some nerve damage and caused him problems with his walking and balance. When I first saw him, he used a walker and leg braces, but this determined little man (he always had that tongue out in fierce concentration, like my brother) would often throw the walker off and just stumble around on his own. More recently he had been walking better, and he had been going to regular kindegarten, which he loved. I remember him playing tag and hide and seek with Zachary at my mom's house. Nothing stopped this boy. Even though Zachary was faster, he was determined to chase after him. I was looking at pictures from his birthday party with his face painted like a tiger. Kendall wouldn't have his face painted for that party (he seldom did... he didn't like people touching his face), but a few weeks later at Gia's party, he made them paint his face, and he choose the same exact tiger design as Drew. The boys had such fun together at Sunrise Day Camp.

I wasn't going to post the following essay. Well, I have been thinking of it for a while, but I felt it was too upsetting... too depressing...too real. But right now I'm in a mood to tell it like it is. Looking back, I really did gloss over much of Kendall's treatment and suffering. Partly this is because it is (was) just my nature to seek the positives out and to cover up the real pain. But much of that was because it was so important to me that Kendall be treated just like everyone else. I didn't want people looking down at him with pity all the time and making him feel sorry for himself. We had a make the best of things attitude, that I feel really made what there was of his short life better. But the downside of this was that our friends and family often didn't really know or understand just how serious his illness was. I didn't write this essay, and I don't know the woman who did. It was something posted to our Angel's group (an online support group for those who have lost children to cancer). For those who are very sensitive and easily depressed (that means you Cindy!), please just stop reading now as I will end with this essay. I have nothing more to say right now.

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This was written by a cancer Mom, Carol, who lost her sweet little Jonathan in July. I think it's very honest, and reflects so much of what we feel.

I HOPE...

I hope you never have to hear the words, "Your child has cancer."

I hope you never have to hear, "The prognosis is not good."

I hope you never have to prepare to undergo radiation or
chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

Look at you with fear in their eyes and say, "Don't worry Mommy,everything will be okay.'

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the "cure" you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

"It's going to be okay, Mommy."

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, "There is nothing more we can do."

I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, "It's going to be okay Mommy."

I hope you never have to face the few friends that have stuck beside you and hear them say, "Thank God that is over with,"...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to "normal".

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

"The cancer has returned" or "The tumor is growing."

And your friends become even fewer.

I hope you never have to experience any of these
things...Because...only then...

Will you understand...

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On March 22, 2008, I am still planning on shaving my head for a St. Baldrick's fundraiser, along with my friend Cindy and some other Shavee's. The event will be held at Spectacular Eastside Parties, at 10 East 5th Street
Deer Park, NY 11729. This will be a family event (no drinking!) with fun and games for the kids. If you go to www.stbaldrick's.org, you can look me up by name, or look up the event page, or even look up Kendall as he is an honored child (there is a really cute picture of him in a ball pit there!). Cindy would like to have each shavee (there is plenty of time to sign up to be shaved with us!) have a child to honor for the event, so if your child has cancer and you would like to participate, please contact me. We will match up shavee's with children to help motivate and inspire them. I will be getting more information out in the coming weeks, so keep checking back.

Wednesday, January 9, 2008 1:19 AM CST

It is with great sadness and a very heavy heart that I must tell you of the passing of one of Kendall and Zachary's good friends, Drew. I posted a photo of him and Kendall above. I am just so heartbroken for his wonderful and devoted family. I am just too emotionally and physically exhausted to write more than that right now. I'll try in the morning maybe.

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