Journal History
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Thursday, November 3, 2005 7:58 PM CST
Thank you so much for the birthday wishes. Could you believe it...Zachary is 6 years old! He had a wonderful day. He brought in brownies to school. He came home with lots of stickers on his shirt and a birthday crown. We went with Grandma and Grandpa to Zachary's favorite restaurant for dinner. Now he is tucked away in his new spiderman sleeping bag. What a blessing!
Dana
Tuesday, October 4, 2005 5:25 PM CDT
Four years cancer free...Can you believe it?
Today we celebrate Zachary's courage and Kyle's bravery!
Have you hugged your kids today?
Monday, August 22, 2005 5:14 PM CDT
Hi Everyone
Sorry for the long time between updates. Have no fear, no news is "good news". We have been enjoying the summer. The kids are getting so big.
The boys went to recreation camp at the lake by our house. They had a great time despite the really hot weather. I can't believe the summer is coming to an end.
Meghan is growing and changing everyday. She is such a princess. She learns new words and activities quickly. She started walking in the beginning of July and has not slowed down since. She strives to keep up with the boys.
Kyle can't wait to start second grade. He loves to be with his friends, and misses the ones he hasn't seen during the summer. He has taken an interest in football. As many of you know and interest for Kyle becomes an obsession. He spends alot of time watching ESPN and reading his sports illusrated for kids book.
Zachary, well what can I say, he is a miracle. He continues to grow slowly, but atleast he is growing. He went for his LAST oncology visit last week. He weighed in at 38 1/2 and was 41 1/4 inches. That places him at the bottom of the percentiles, but genetics was not going to allow him to be a giant. His next visit will be in 12 months at CHOP with the long term care doctor. The fear of relapse is far in the back of my mind, but the fear of damage from chemotherapy remains in the front. I look forward to meeting with a doctor who specializes in this area. Zachary continues to battle hypoglycemia and chronic stomach pain. We have learned to live with the hypoglycemia, but I wish there were a doctor that can answer our questions and tend to his need properly. As for the stomach pain, his oncologist suggested stopping all dairy to see if that helps. If that doesn't work we will consult with his GI doctor. On the non medical side...Zachary will be entering kindergarten in September! Who knew we would get to this point. He is so excited!
We enjoyed a visit yesterday from the Gray family. Zachary and Sami have a special relationship that I hope will last (despite her having so many boyfriends...it is hard to be so pretty!). We look forward to an October trip to see the Cole family. They are so dear to us and I miss them!
Chiara's parents Fred and Mari have started a foundation for JMML. This is a huge step in learning more about JMML and how to better treat it. Stuart and I have agreed to help with fundraising. If anyone has any suggestions we would greatly appreciate it. We need to raise $14,000 by December in order to hold a symposium made up of 40 doctors who treat JMML. Feel free to email me with any guidance you can offer.
Dana
Monday, May 9, 2005 5:49 PM CDT
***check out the new pictures***
Thanks to my dad, my computer is learning to get along with me. I am sorry so long has passed between updates. The good news is all is well here. Time seems to be passing quickly and the kids are growing like weeds!
Over the spring break, we had a wonderful trip to Florida. After a very long drive, we got to spend the afternoon with Stuart's Aunt Dian and cousins Pam, Mike, Alyssa, Taylor, Michael, Beth and Gabi. Thank you for taking us out to lunch. I wish we could have spent more time together. We then headed to see Stuart's parents and to spend the week with them. The kids loved the park by their house and the swimming pool. We got to visit with Aunt Nancy, Uncle Steve and Cousins Marc and Judith. We then headed for Disney for the remainder of the week. The kids were sorry to see the week end. Thank you Nana and Pop Pop for a great vacation.
Meghan is now one years old! I just don't know where the time goes. We had a party at the house. Laura, Cameron and Colton Cole along with Jessica came a long way to celebrate with us. We had a wonderful weekend. It was cute watching the babies play and fight over toys. I hated to see them go.
Zachary will be registering for kindergarten this week for September...Can you believe it! He is very excited to ride the school bus. Everytime we go to the school to pick up Kyle, he stares in to the kindergarten classroom waiting for Mrs. A to come out and hug him.
As far as the endocrine studies go from Boston, so far the results are negative for GSD. We expected this since the saliva DNA is Kyle's not Zachary's. I guess we will figure it all out if he doesn't out grow the hypoglycemia in the next few years.
Thank you for checking in...drop a note to say hello!
Dana
Wednesday, March 9, 2005 10:38 PM CST
I am so sorry for the lack of an update. Me and my computer have not been getting along very well. I hope I haven't caused any worry. Zachary is doing great. His oncology visit went well. His counts were normal. We got to hang out with the Gray family and have lunch together. I think Sami being there helped Zachary to stay calm. As we get further out of BMT, Zachary remembers very few of the nurses. After people would say hello, he would ask who they were. He did behave well for Dr. Bunin and gave a hug to Ginny. Zachary continues to grow and gain weight. He was 40 1/4 inches and 37 pounds. He had his prekindergarten physical and caught up on vaccines. He so far shows no late term effects from his treatment. We are still waiting on the GSD Type 0 results.
Kyle has been worn out with a virus of sorts for the past week but appears to be on the mend. He was so proud to place second at pinewood derby for cub scouts. He went to districts and placed 9th out of 21!
Meghan is growing like a weed. She is so active, I can barely keep up. I hope to get new pictures on soon if my computer will be nice.
Dana
Sunday, January 23, 2005 3:31 AM CST
And so the winter continues...a big snow storm and the never ending cooties. I just wish Zachary would catch a break. He finished his antibiotics for a staph infection and remained febrile through most of it. He finally seemed ok...for only 2 days. On Thursday he said his ears were aching...well you know what comes next, a whopping severe double ear infection. Since he just got off antibiotics, we had to go one step stronger. He is now on Omnicef for the next 10 days. He just amazes me. Zackie manages to play and be happy no matter what is thrown at him. I sort of look forward to our up coming oncology visit just to know he is ok. I know in my heart he is still cancer free, but sometimes you just need that reminder.
Nothing will stop Zachary today from playing in the foot of snow. Kyle is not as impressed by snow, but I think they will have fun on the sleds today. Meghan watched the snow with wide eyes. It reminded me of when Zachary finally got the chance to explore the world from other than a hospital window. He saw the trees swaying from the wind while playing outside, and turned to ask me why the trees were moving. Meghan is now crawling and getting into everything...just ask the boys. She is full of personality and seems to be the new boss of the house. The boys just love her and take great care of her. Kyle is growing up so fast. He has already lost 6 teeth and is saving his money from the tooth fairy for when he is grown up. Nascar season is starting soon and he is very excited. He has taken to watching football in nascar's off season.
Sorry Sami for the cancelled visit...you have seen more than your fair share of sickness, we didn't want to pass on the cooties. We hope to see you soon.
Oncology visit February 15th.
Dana
Wednesday, January 12, 2005 10:29 PM CST
With the winter, comes fevers and colds. Meghan and Stuart were the first to be hard hit. Meghan started her fever on Friday and was miserable. On Monday we headed to the pedi and she was diagnosed with a double ear infection. She was put on Amoxicillin and is doing MUCH better. The doctor insisted on checking her spleen and liver due to the fact that Zachary's journey began at this time in the same way. I don't worry about Meghan that way. As I told the doctor, Meghan is Meghan and Zachary is Zachary. Stuart seems to be getting over whatever nasty virus that knocked him off his feet.
On Monday I also dragged Zachary with me to the pediatrician. Since before Christmas, he has had a rash on his bottom. It turns out that he has a staph infection around his rectum and the rash is a result of that. He was placed on Cefzil in hopes of clearing it up. Oddly, once he started the antibiotic he started a fever. He has been miserable since. I imagine it is a coincidence and he just caught whatever bug Stuart had. His blood sugars have been crazy, but we are dealing well with it. He is such a trooper. I hope feels better by tomorrow so he can go back to school. If the infection doesn't clear up, we will have to get it looked at by the GI doc to rule out proctitis...one step at a time. We still have no word about the GSD test.
Happily Kyle and I escaped this round of cooties...so far.
We plan to go to visit the Gray family on Saturday Sami's Web Page
Dana
Thursday, December 9, 2004 5:51 PM CST
***New pictures added 12/16/04***
Sorry it has been a while since I checked in. I just don't know where the time goes. Everyone here is doing well with the exception of the normal pre-winter cold. Meghan was hit the hardest this time. She seems to be feeling better now and is back to her normal happy self. Zachary has the cold now, but he is the most resilient of the bunch...odd huh? Kyle and I seem to have escaped the cootie...for now.
We had an awesome Thanksgiving. We went to Grandma and Grandpa's house with all the family there. The food was great! On Friday, we headed down to Virginia to Aunt Julie and Uncle Matt's house. Nana and Pop Pop were visiting with them, so we thought we would join in on the fun since we don't get to see them much. We celebrated Hanukkah early. The kids loved all there new toys. Thank you for having us!
The kids were so excited for Hanukkah to start. They are doing well with only openning one present a night. Kyle has been doing the prayers over the candles on the Menorah by himself.
Zachary did his saliva sample to test for GSD Type 0. It was sent to the Children's Hospital of Boston. We don't expect to hear anything until January. Frankly, I don't expect an answer at all since the results would only show genetic info on Kyle since he was the donor. We ordered some nutrition bars that contain uncooked corn starch to keep his sugar levels stable at night. We are going to give it a try tonight. Zachary woke with a blood sugar of 42 last week (normal is 70-110). He is worse when a virus is brewing.
Enjoy your Holiday Season.
I will add more pictures soon. Say hello and let us know you are out there reading.
Dana
Thursday, October 28, 2004 10:46 AM CDT
We had an awesome time on the Disney Cruise. Over a year ago, when asked by Make a Wish what he wanted,Zachary chose the big red Disney boat. We waited until we felt Zachary was old enough to really enjoy it...and he did! He was treated like a king and often acted like one too. For the first few days, as we tried to keep his behavior in check, he would tell us "you are ruining my wish" and "this is MY wish anyway". Luckily, my sweet, yet very energetic boy returned and it was smooth sailing from there. I couldn't say enough about this wonderful vacation. Thank you to Make a Wish and those that contribute for an awesome gift and for honoring Zachary's courage.
Once home, it was back to reality. Kyle had a fever, Meghan had 4 vaccines for her 6 month well check, and Zachary's blood sugar levels were a mess. The diagnosis of ketotic hypoglycemia may need to be revisited as he is leaning more toward a metabolic disease. A plan is in the making on how to properly diagnose him and the possibility that Kyle and Meghan may too be affected. One step at a time though. I will go into further detail after I meet with the endocrinologist. As for now, Zachary's care remains the same. We continue to truck along.
Kyle loves 1st grade. He has adjusted well to full day school. He still has problems with fine motor skills and we hope to get him help through the school's occupational therapist. I am learning quickly though, it is quite a battle to get your child's needs met in school.
Zachary is having an amazing year in pre-k. The public school refused to evaluate and intervene in his learning needs, but his current school is doing great with him. His teacher is wonderful so we decided to send him 5 half days instead of the 3 he is doing now. He is trying so hard and suceeding as he always does.
Meghan is now 15 pounds 3 ounces! She has the most beautiful blue eyes, just like her daddy. She is a cuddle bug and hates to be put down. Needless to say, I can't get a lot done during the day. The boys adore her as does she them.
The boys had their birthday party this past weekend. Kyle will be 7 on October 30th and Zachary 5 on Nov 3rd.
Happy Halloween!
I will post new pictures soon, so check in. Don't forget to sign in to say hello, Zachary loves to read his messages.
Dana
Monday, October 4, 2004 9:12 PM CDT
***New pictures***
3 years...can you believe it? 3 years ago, Zachary had his bone marrow transplant, the very reason he is still with us today. Zachary was so proud to celebrate his re-birthday. He brought in cookies to share with his class. He told all his friends and his teacher that "it is his special day" and that He has had "no leukemia for 3 years". His friends asked him what leukemia is, and he told them he was sick and had a tubie in his nose (I guess that is what he remembers). They also asked why, and he responded "I just did". Children are so innocent and question nothing.
We were blessed that our celebration included his "hero", his donor. It amazes me how brave Kyle was then. Kyle says he would do it again if he needed to. He always ends that conversation with questioning why he couldn't save Colby Cole.
I pray this nightmare is behind us and can only wish the fear of relapse would leave me. In my head I know he will be ok...a survivor, but my heart always wonder what tomorrow will hold.
Everyday with Zachary is a blessing...even though he drives me crazy!
Take the time to donate blood, get on the bone marrow registry, donate to a cancer fund, pray for these families, and most of all...cherish your childrenand tell them you love them.
Dana
Happy Birthday to Emily Dolan...another blessing 3 years ago today.
Tuesday, August 24, 2004 1:12 PM CDT
***Check out the new pictures***
Sorry it has been so long between updates, but I am not too sure if people still check in. Dont get me wrong, that is ok. Zachary has been in remission for nearly 3 years. It amazes me how time flies! I had hoped to keep up this site to help those who are newly diagnosed with JMML. Zachary's story is quite rare, first with his diagnosis of JMML a rare cancer, and second, his survival. It breaks my heart to keep having to add angel wings in front of the names of other children with JMML. I will just never understand.
Zachary is doing very well. He continues to grow and flourish. His counts are great. His blood sugar levels continue to be a problem, but we are dealing with the episodes as they come. He already had his 3 year visit at CHOP even though his anniversary for BMT is not until October 4th. All that is left for him this year is a "well" visit with his pediatrician and his annual cardiology visit. Some how life is getting more and more normal. We just pray the carpet is not pulled from underneath us just as we have seen with another child who is also 3 years out.
Since I last updated, we had an awesome week at Rehoboth De thanks to Grandma and Grandpa. They rented a house for my entire family. The boys had a great time! They love spending time with their cousins. Meghan was spoiled rotten by her Aunts and Grandparents. Kyle learned to boogie board. Both boys loved playing in the ocean, riding rides at the amusement park, going to the water park and even going for a ride on wave runners! It was a great escape from reality.
One of the days we were on vacation, we headed down to nearby Ocean City MD to see The Cole family. They too were enjoying a beach getaway. It was so great to see them and only a preview for our next trip. This past weekend we headed to Uniontown Pa for an official visit with the Coles. It was a great time had by all. We even got to visit with Jessica "Whateeka". It is cute to watch Meghan and Colton together. It feels so good and peaceful to visit Colby's grave and well worth the 7 hour drive. Our visit was too short.
The summer is now winding down and we are getting ready to start school. Zachary will be in Pre- K three days a week in the mornings, and Kyle will be in 1st grade.
Hug your children.
Dana
Sunday, July 11, 2004 1:00 PM CDT
Things are well at the Doctor household. The boys have been busy enjoying the summer. They both go to camp at the lake and love it. They come home so tired, but that doesn't stop them from the endless play dates. Stuart bought the boys one of those large blow up pools and they love it! Both boys have learned to go under water and even cousin Ryan has learned not to be afraid of pools.
We went to Ocean City MD for 4th of July weekend. We had a great time. Zachary has learned to like the ocean and Kyle loves playing in the waves and sand. We vacationed with the Eimont Family for the second year in a row and hope to make it an annual thing. The fireworks were beautiful. Zachary kept commenting that Colby must have the best view. We missed seeing Whateeka, but look forward to seeing her when we visit the Cole family next month.
Zachary has been tolerating the heat very well. He does occasionally complain of tummy pain and loose green stools...still our biggest medical mystery. He went to see an endocrinologist about his episodes of hypoglycemia and essentially learned nothing. They said he will out grow it and to deal with the episodes as they come. Zachary weighed in at 35.5 pounds and 39 inches. He has grown 1/4 inch in 5 months. He is in the 10or both height and weight. We go to CHOP in August for a "well" oncology check up.
Meghan is growing like a weed. She is 2 3/4 months old and weighs 11 pounds 10 ounces ( she started at 7 pounds). She loves to smile and coo. She loves her brothers, especially Zachary because he spends a lot of time and attention on her.
Check out the picture page
Cherish your children.
Dana
Saturday, May 29, 2004 8:13 AM CDT
Sorry for the lack of an update. I did try to update last weekend, but some how it got lost...UGH! So where do I start...We have passed two milestones. It has been 3 years since Zachary was diagnosed with JMML. It seems like forever ago, but the horror still echos in me. The day prior to D- Day, Meghan turned one month old!
We had a wonderful visit from Laura, Cameron and Colton Cole and Jessica. It was so refreshing to see Laura and the aura of strength that surrounds her. Colby was deeply missed, but he shined through in Cameron's laughter. The Gray family came to join in the fun, as did Grandma, Grandpa, Aunt Laura, and Cousins Ryan and Jake. The kids played til late. Meghan and Colton had their first meeting. They are both so precious. I could only close my eyes and picture Colby spoiling the two of them with his charm.
Zachary spent the rest of the week very itchy. We thought he was having an allergic reaction , but it turned out to be the 5th disease. With the onset of the rash, the end of the disease, his blood sugars stabilized. He is no longer contagious, but sneaked in sharing the virus with Jessica. We are not sure where Zachary had his exposure, but the important thing is his immune system is handling it very well.
Above is a list of other children with JMML. Please visit their sites and say hello. I will never understand why Zachary had made it, while too many others have not.
Cherish your children.
Dana
Wednesday, May 5, 2004 4:30 PM CDT
I just wanted to update to have everyone check out the new pictures on the photo page. Things have been great here. Meghan fits right in to our little family. The boys love her so much. Zachary has been a big help in taking care of her.
Meghan had her first doctor's visit today. She is now 7 lb 13 oz! Boy do they grow fast. She will be 2 weeks old tomorrow. Stuart and I were commenting how nice it was to go to the doctor and hear how "well" your child is doing. We always heard bad news with all of Zachary's doctor visits, including his first 2 weeks visit.
Thank you for checking in!
Dana
Sunday, April 25, 2004 10:27 AM CDT
We are all home now...Family of 5. Meghan is such a sweet baby and quite cute (if I may say so myself). Kyle and Zachary welcomed her into our family with open arms. Thank you Laura Cole for sharing our great news and thank you to Grandpa for posting pictures. The pictures on the photo page were taken in the delivery room in the first hour of Meghan's life.
A HUGE thank you to my sister Laura for being an awesome labor coach and to Joy for keeping me focused through the pain. Of course to Stuart...Thank you for another beautiful child. We are so blessed.
Dana
Tuesday, April 13, 2004 1:19 PM CDT
UPDATE
"ATTENTION EVERYONE--MEGHAN REBECCA HAS ARRIVED"----she was born at 2:42pm April 22, 2004. I just heard the wonderful news (this is Laura by the way). Meghan is 7.0lb and 20 inches long. Word has it that she is gorgious!!! Congrats to Dana, Stuart, Kyle & Zachary--we love you all.
Waiting...Waiting...Waiting...Why is it that Meghan tried to break out 18 weeks early, but now seems to want to stay in forever? Ok, granted, I haven't hit my due date, but I am ready. The kids are excited and anxious...Daddy too! Kyle has predicted for months that she would be born on April 15th...hmmm...maybe. Over all I feel fine, just fat.
Zachary has had a bit of a problem regulating his blood sugar levels. As you may remember, Zachary has a condition called Ketotic Hypoglycemia. Usually his sugar levels are stable, but on occasion, they fall too low. This mostly occurs in the morning after fasting. For the last 2 weeks, his sugar has been dropping at 11pm. This is odd for him. Today he woke with a very low blood sugar. He was out of it, complaining of stomach pain, and was vomitting. We went to the pediatrician and was found to have an ear infection and sinus infection. When we got home, his levels went the opposite way...too high. By tomorrow the antibiotics should kick in and his sugar levels should stabilize.
So that is the news of the day. I will update when Meghan arrives.
Dana
Wednesday, March 3, 2004 7:59 AM CST
We sure are enjoying the nice spring weather...how ever long that may last. The boys have loved getting outside with their friends. They race on their power wheels and ride their bikes. Zachary has taken to playing his own version of football. I hope the sunshine continues, but we all know how March is.
Zachary is working really hard to learn his letters. This stuff just doesn't come easy for him. He has also been trying to write his name. He prefers to draw pictures of people and giving it to them as a present. My frig is covered in his art work. He has also started taking Judo lessons. He looks so cute in his uniform and is quite talented. Our major problem with him is his lack of desire to follow directions. The more he goes, the better he behaves though he does have a way to go.
Kyle is doing great. He spent the entire winter on antibiotics for infected adenoids. The x ray came back certain of that. This last round he just finished seemed to make all the difference. I guess his sense of smell is quite profound now. He is constantly asking me if I smell something. His face is less swollen and his mood is far better. We will have to see next week how he he does off of antibiotics. With the winter ending, this should end too. Kyle is also doing Karate and Judo. He is great at it and loves it. He is hoping to test for his yellow belt in Judo. T-Ball season starts soon and he just cant wait. Kyle continues to do very well in school. He is quite the book worm.
Zachary has been asking a lot of questions about when he was sick with leukemia. It amazes me how much he remembers. He was 18 months old when he started chemo and was 2 when he had his BMT. That is more than a half of a lifetime ago for him. His memories are not scary though. I do wonder what he sees when he sleeps because he still cries every night. He has asked me why only some kids get cancer and he wants to know why some go to heaven. He can't understand why if Colby had the same leukemia why he had to die. For these questions, I have no answers. Amazingly, Zachary does not fear getting sick again. He must know that he will be fine.
The boys are looking foward to the arrival of their sister. They still need to wait 8 more weeks. Zachary tells me he wants to come with me to hold my hand. He told me tenderly that I will have a needle in my hand with a tubie (an IV). I asked his why he knows that and he said that he always got that when he had to be in the hospital. They can't wait to buy Meghan barbies and "girl stuff". Zackie even said he will give Meghan his "hmmm" (or blankie). I have a hard time believing that...he has slept with that since he got sick.
I will add new pictures soon.
Dana
Wednesday, February 4, 2004 8:03 AM CST
Thank you for checking in on Zachary and our family. It amazes me at the love that still surrounds us after so much time has passed since Zackie's battle.
On Monday I took Kyle to see a ENT doctor. Of course, he was feeling better than ever the day of his visit. I went through the past 2 month history with the doc. After an exam, it was concluded the infection was in his adenoids and not his sinus'. It seems it needed the 3 rounds of antibiotics to get rid of it. He sent Kyle for a soft tissue xray to be sure the adenoids are clear now. We left the office but not before Dr. Shah commended Kyle for being a hero to his brother. He was touched by our family's story, which touched my heart. Kyle was so brave for his xray. He has never had one and was quite nervous. He did the first one, but when the tech wanted a second, he broke down and cried. He told me he would do it but he was "MAD" and wont buy me a birthday present this year! After he was done, he apologized for yelling at me and said he would buy me anything I wanted...he was just scared. I hope to get the results today.
Yesterday was Zachary's visit to CHOP. Grandma came along which was worth more than gold! We were greeted by one of Zachary's BMT nurses. He didn't seem to remember her, but we will NEVER forget her. It was great to see you Carrie! Hey Anne...Where were you???? We missed you! Zachary was first called to the lab. I had to drag him kicking and screaming (not easy when you are 7 months pregnant and in preterm labor). He gave quite the fight. The more he fought, the harder I held on. He finally yelled to me he would do it if I would just let go!...Gee he was right, he is a.big boy now and didn't need me holding him like that. He had all the blood drawn in one poke.
Zackie's next stop was triage. He had his first growth spurt in 2 years. He went from 37 1/2 inches to 38 3/4! He also went from 32 1/2 pounds to 34 pounds. I told Dr. Bunin that it is directly related to the fact he hasn't had tummy pain in 3 months. All his labs looked good WBC 16.6 (he had a cold when we went), Hgb 14.1, plt 398 and a VERY normal differential. Dr. Bunin gave him a clean bill of health and told us we dont need to return for 6 months! Grandma then treated us to McDonalds and took Zackie to the store to buy a toy and pick out one for his brother.
Friday, Zackie will go to the dentist. He promises me he will be good, but last time he puked on the hygenist...so we will see.
Dana
Tuesday, January 27, 2004 11:53 AM CST
Not too much to update on here....I guess that is a good thing though. It has been a cold, snowy winter. I think we are all ready for spring to roll around. The kids have been passing along colds to one another. Amazingly, Zachary has done well but Kyle has had it far worse. Kyle has had the never ending sinus infection. He is on his 3rd round of antibiotics in 2 months. Tomorrow he is scheduled to see an ENT, but wouldn't you know it, he feels great now. Who had the BMT anyway??!!! Today Zachary is under the weather with a cough. The biggest concern with him is keeping his blood sugar levels stable. As you may remember, Zachary has a disorder called ketotic hypoglycemia. When he is sick, his blood sugar drops and his ketone levels get too high. He needs to eat well to keep his sugar levels stable...not an easy task to make a child eat when they are sick. He is more aware of his body now and knows when he has to eat. He is also doing his OWN blood sugar levels.
I am enjoying spending time with the boys since I have been off work. I must admit though, I do miss working and getting out of the house. I have been working with Zachary on learning to recognize letters and numbers. He is also trying to master writing his name. Kyle has been practicing his reading everyday. It amazes me how well he can read at age 6. Kyle has also started taking karate lessons. Zachary plans to play soccor in the spring.
Zachary will go to CHOP for his "well" oncology visit on Feb 3rd. I expect only good news. Over the past 3 months, Zachary has had a growth spurt. I marvel at how far he has come.
Dana
Wednesday, December 31, 2003 10:57 AM CST
I hope everyone had a nice holiday. The kids had such fun openning all their presents. Tonight Stuart and I will sneak away for the night to celebrate the New Year. Aunt Jill will be staying with the boys. We don't have much in the way of plans due to complications that have arised with my pregnancy. I am now 22 weeks along and already contracting. I also had preterm labor when I was pregnant with Zachary. Now I must take it easy and stay off my feet. Zachary's biggest concern is that he wont have any more McDonalds. He thinks I go to work just to earn money to take him there. I told him not to worry Grandma and Grandpa will take care of his fast food needs... Hint, Hint.
Tonight Stuart and I plan to go out for dinner and go to a hotel (15 minutes away). We haven't been alone together in a long time. I hope Zachary will do well not sleeping with us. Tomorrow our dear friends, Laisa and Jim, with their son Jacob will visit. On Sunday, the Gray Family will visit. Zackie is excited to see his girlfriend Sami.
Check out the new pictures.
We wish all of you a happy and HEALTHY 2004.
Missing Colby James
Dana
Saturday, December 20, 2003 1:55 PM CST
Happy Hanukkah!
The kids are so excited Hanukkah is finally here. They got to open some of their presents last night, but have a lot more to go. This year the kids have been learning the meaning of Hanukkah. Kyle absorbed the info like a sponge and Zachary was more concerned about the presents. I love to see the joy on their faces as they open the gifts and watch Stuart and I open the gifts they got for us. Kyle was able to do his own shopping this year at school. My most heartwarming moment was watching Zachary wrap some presents for me. Before I open it, I will have to take a picture. I kind of wish I could leave it wrapped in the crumpled way he did it to just help freeze time. They are growing up so fast.
Today we not only celebrate The Miracle of Light, but in the Doctor home we celebrate the miracle of life. God has given us 807 cancer free days with Zachary. Over 2 years ago, I fought in my mind wishing to fast forward to see if Zachary would live, but also wanting to freeze time so that if his life was meant to be only 2 years that I could hold him forever. I want to say I always knew Zachary would live through this horror, but it was mostly me never wanting to let him go. Here we are, Zachary is happy and healthy. Today I am grateful for 807 days of Zachary making me want to pull my hair out with his antics, tired nights from his nightmares, for his destructive ways, and mostly for the sweet kisses I get all day and the soft arms that wrap around me at night. He is truly a miracle. My boys are my life.
From Stuart, Kyle, Zachary and myself...we wish you the happiest of holidays. Take time to love one another and be thankful for the miracles in your life.
Dana
Wednesday, November 26, 2003 10:17 PM CST
Kyle is happy to report (and Zachary not so happy) that baby Doctor is a GIRL! Kyle had said he would run away if it was another brother (no offense Zachary). When we told Zachary it was a girl, he exclaimed "YUCK!". Either way, they are getting a little sister.
Have a Happy Thanksgiving!
Missing Colby James
Dana
Monday, November 10, 2003 9:47 AM CST
***New Pictures Added***
We're back from Disney and boy do I need a vacation from vacation. We drove down to Florida and the kids did great. We got there on Saturday and didn't head towards home until the next Saturday. We had plenty of time for fun, fun, fun. We stayed in a timeshare condo with our neighbors the Sussmans. The place was very nice. While we were there we got to spend lots of time with the Gray Family Sami's Web link We also spent lots of time with Nana and Pop pop.
The parks were more crowded than we are used to. There were lots of conventions going on. It was also a lot hotter than we expected, but we were prepared. The kids enjoyed the rides, with the exception of Zachary being scared of 3-D and dark rides. Alot of the rides he begged not to go on, he wound up loving. He even held Sami's hand during the dark parts on the people mover. We enjoyed the spectro magic parade and the fire works at each of the parks. The boys enjoyed showing off their Birthday pins. I can't think of a better way to celebrate their birthdays.
It feels good to be home now. Aside from the large temperature decrease! Kyle is off from school until Wednesday which gives him time to catch up on the homework he missed while we were away.
Thank you so much for the Birthday wishes and for checking in on us.
Missing Colby James
Dana
Monday, October 27, 2003 9:01 PM CST
Nothing too much to update. We are having fun enjoying the fall season and all the Halloween festivities. We celebrate Zachary's continued remission and good health.
A very Happy Birthday to our hero Kyle. On October 30th he will be 6 years old!
Also, Happy Birthday to Zachary, our amazing miracle. On November 3rd he will be 4 years old!
Missing Colby James.
Dana
Thursday, October 9, 2003 6:37 PM CDT
Sorry for the delay in update. Zachary went to CHOP for his 2 year post BMT check up. For starters he hasn't grown in 4 months, in fact he hasn't grown too much period. I know people's response is look how short we are, but Zackie should still be growing. After he is weighed and measured, they plot it on a graph. A child should maintain the percentile they are usually plotted in. Zachary has gone from the 50th % to the 25%...well now he is barely on the chart. He did gain a pound though. He is officially 37 1/2 inches and 32 1/2 pounds.
Our next stop was the lab. They ordered way more blood work than his veins were willing to give. The lab did a great job at splitting it all up. We were only short 2 tests, the tcell function and mitogen test. We will go back in 3 months to get those done. Zachary was so brave. He endured 2 venipunctures and a finger stick. He begged the lab tech to stop and not give him any boo boos. His concern went from the ouchies to what kind of stickers and bandaids they had. He will do just about anything for a spiderman sticker! The only results that we have are from the CBC. His WBC was 9.0, his Hgb was 13.8 (that is where he gets all that energy), his hct was 40.3 (the reason for a difficult blood draw, thick blood), and platelets of 338. His differential was fine being he had a cold at the time. His monocytes were 9%( normal but I always like it lower) and he had 1% atypical lymphocytes (assuming that was a fluke or from the cold he had). All in all, his counts were great. That 1 cell was there to remind me that anything can change at anytime.
Dr. Bunin was on service so we had to see a new doctor. She was great and spent a lot of time with us talking. At this point with the leukemia behind us, my concern is for late term effects. Zachary really liked this doc and didn't give her a hard time. His exam was perfect and we were sent on our merry way.
I was so happy to bump into Anne and Ginny. They are 2 of the people that helped both me and Zachary survive this horrific nightmare. I am so forever grateful to them that words can't quite express it.
Next week Zachary sees his cardiologist for an echo and EKG. He does have a mild preexisting condition but 2 of the chemo drugs he received have cardiac late tem effects that need monitoring.
Did I happen to mention who will be a big brother??? You guessed it...ZACHARY and Kyle once again. Stuart and I are expecting our 3rd child in the beginning of May. Zackie has tenderly named the baby "Ducky"! Our life has been full of blessings and miracles.
Thank you for checking in on us.
Dana
Saturday, October 4, 2003 4:23 PM CDT
***10/6/03...New pictures added, check them out (sorry they took so long). Tomorrow Zachary sees Dr. Bunin for his oncology check up***
A very Happy 2 year Re-Birthday to Zachary!
Today is 2 years since he received his new chance at life. It is a half of a lifetime ago for him.
Today we celebrate Zachary's courage and endurance and Kyle's bravery.
To both my boys...I love you more than you will ever know. I am so proud to be your mother!
Saturday, September 27, 2003 9:54 AM CDT
What an awesome weekend this past weekend was. On Saturday we had the "Light the Night" Walk to benefit the Leukemia and Lymphoma Society. There was even an article in the Observer that morning about Zackie! Thank you to all the people that donated money in Zachary's honor. Our donations were approximately $2,400. We thank the Manchester PBA and Lakewood PBA for their generous support.
Walking on Zackie's team was Mommy, Daddy, Kyle, Aunt Laura, Uncle Scott, Cousins Ryan and Jacob, Bob, Ryan, John, Helene, Thomas, Ilana, Dean, and Benjamin. Thank you so much for being there with us! We met up with Corrine, Bruce, Cameron and Ian. Ian is a lymphoma survivor. Ian said something to me that warmed my heart...He asked me for a marker. He was wearing a label that said "I am Walking for: Ian". He wanted to add Zachary's name too! He and his family are amazing people.
For those of you not familiar with Light the Night, we walk carrying illuminated balloons. Zachary and Ian carried white balloons signifying "survivor", while the rest of us carried red balloons to tell the world that more needs to be done. All our balloons were sent up to Colby to tell him we will fight in his honor and NEVER forget him.
On Sunday it was off to Dover for a Nascar race. We met up with Colby's cousin Jessica "Whateeka". We had so much fun! My legs were killing me from all the walking we did. Just a hint...never say you will meet up at a merchandise trailer, we were at the Gordon trailer, so was Jessica...ON OPPOSITE SIDES OF THE STADIUM! Sorry Jess! The kids were tuckered out from the walk and took a nap during the race (even with all that noise!). I have lots of pictures to post, I just need to find the time.
School is going well for Kyle. We had Back to School night this week. They had a video of the kids at school...it was so cute. We got to see Kyle's classroom and posted art work. We left a note in his box saying how proud we are of him and how much we love him. I was touched and brought to tears that his teacher had the newspaper article from Saturday's paper with Kyle's name highlighted. We are forever proud of what Kyle did for his brother, and touched that other's are just as proud. The next day at school, Kyle shared his story with the teacher and class. He cried to me when he got home that he is happy to have saved Zachary, but sad he couldn't save Colby. He wanted to know why Dr. Bunin couldn't save him. I hugged him as tight as I could and told him that Colby was saved...he is in the hands of God. He is no longer sick.
Zackie is loving preschool. He did get one time out so far for acting like a power ranger with 2 other boys. He is a happy, energetic liitle boy. We marvel everyday at his health and pray he never has to know sickness ever again.
On October 4th we will be celebrating Zachary's 2 year post BMT anniversary!
In October we will see Dr. Bunin for an oncology check up and the cardiologist for his annual heart evaluation due to a small defect he was born with.
Thank you for nearly 2 1/2 years of love and support. Your prayers are working!
Missing Colby James
Dana
Tuesday, September 9, 2003 8:26 PM CDT
***9/15/03 Thank you to the Manchester Township PBA and Bob Dolan for a very generous donation of $1,000! Mine and Stuart's co-workers have also been great supporters. The checks have started coming in, just 3 totalled $165. I am so grateful for the support in Zachary's honor. We made it through Zachary's illness with little outside financial support, other's aren't able to get by. This money will greatly benefit those families and support the ongoing research to make cancer obsolete.***
Zachary will be honored as a co-ambassador in the "Light the Night" walk to benefit the Leukemia Lymphoma Society. The walk is on September 20th. With out funding, children like Zachary would have been considered terminal with NO treatment options...medicine has come so far, but not far enough. I ask you to make a tax deductible donation in Zachary's honor as he walks the Blue Claw's Stadium proudly holding a white balloon signifying "SURVIVOR". The rest of us will hold a red balloon, telling the world more needs to be done. I will walk to honor Zachary's battle and to honor the memory of Colby James Cole. Too many are dying from Cancer...please be a part of putting an end to that. The Leukemia Lymphoma Sociey funds research and supports families as they endure this horrific battle.
All Checks must be made out to:
The Leukemia Lymphoma Society
Please right in the memo area "Zackie's Friends"
Last year we raised nearly $4,000!
Mail checks to :
"Zackie's Friends"
1820 Philadelphia Ave
Whiting NJ 08759
I will keep you updated on our grand total!
Thank you for honoring Zachary.
Missing Colby James
Dana
Saturday, August 23, 2003 9:26 PM CDT
***New Pictures added***
Ok Sandy...I was just about to update..hehe.
Things are good on the home front. Since Zackie's last little scare, he has been well. He seems to have gotton a sinus infection that may be moving to his ear. He is happy and playing...so no worries. The boys are getting excited to start school. Kyle can't wait for kindergarten.
Since my last update, we were visited by Make a Wish. I am still floored what they will do for kids like Zackie. He kept saying he wanted to go on the Disney Cruise, but of course became shy in front of them. They came with a great power ranger toy for him and a Nascar track for Kyle. We all chatted for a a while, then Zackie came up and handed them his video advertisement for the cruise and said "THIS BOAT!". It looks like we will be going on the 4 day 3 night cruise. We will delay our flight home to spend time with Nana and Pop pop. We haven't chose a date, but I imagine we will go next summer. Zackie cried when they were leaving because he thought they would take him to the boat right then and there! Our wish granters were angels on earth.
We took a trip...not with Stuart...no see the Cole Family in Uniontown PA. This was the first time I ever drove that far with out Stuart. And yes Lynn...this Jersey girl pumped her own gas! The kids were good and we got there safe. I met Laura and Cameron at Mt. Macrina where Colby is. Kyle was a bit scared of the cemetary, but Zackie loved talking to Angel Colby and kissing his picture. We miss him so deeply. I should be visiting him at home and playing with him...I hate JMML!
We had a great visit with Laura, Jack and Cameron. It went too fast. I will forever cherish Cameron telling me out of the blue that he loved me...I love you too Cam! Thank you to Laura and Jack for having us during there time of grief and sharing with me stories, videos, and pictures of Colby. Laura bought me the most beautiful necklace and earrings that I will cherish...it was a pink heart that I will use to hold my love for the Coles. The boys loved thier toys too...but I think I left the batman book...Can I come pick it up???
This weekend we have Aunt Julie and Amanda visiting. We got to see Uncle Matt Friday night too! I love having them around. Thanks Amanda for letting me give you and Zack a bubble bath!
Friday evening Kyle was SUPPOSSED to be in a little parade at the Blue Claw's Stadium for little league. It was due to begin at 6pm...we got there 15 minutes before that, but they started early due to a storm. They would NOT allow Kyle to catch up with them. They essentially said "oh well, he missed it". Kyle threw himself to the floor as he had been looking forward to this for a while now. I don't see why they couldn't have waited for the storm to end. So many of these little kids missed it. Kyle still cries about it and there is nothing I can do to turn back time. I guess we wait for next year.
Plans for Zackie...I plan to make an appointment at CHOP with the endocrinologist to discuss Zackies ketoacidotic episodes. We are due for the dentist, so maybe this time Zackie will cooperate and get a proper exam, and he will see Dr. Bunin on Oct 7th for his 2 year post BMT visit.
Missing you Colby James.
Dana
I will add new pictures soon.
Monday, August 11, 2003 5:54 PM CDT
***8/12/03, Zachary was discharged around noon. His WBC has gone to normal with no antibiotics (9.8). His blood sugars have also stabilized. He is feeling great and happy to be home***
Zachary had a horrible day today. He woke up early and Stuart found him lying outside our bathroom door. This is not too odd for him since he tends to migrate to our room at night. He put Zachary in bed with me and he slept. At 9am, he woke up vomitting. He was confused and dazed so I took his blood sugar and it was 64. That is low for him. He drank some juice and his sugar went up to 73...a bit better, but then he kept vomitting. Needless to say, by 11:15am his sugar went down again and off to the ER we went. He was very sleepy, but had no fever, only tummy pain.
Once in the ER, they drew blood and started an IV. You know he was sick when he didn't protest the needle. He perked up VERY well with the fluids and was able to eat some crackers which brought his blood sugar up to 186. His WBC was elevated at 25.4 with 14ands, and 78egs (not blasts), otherwise the rest was normal. He must be brewing a virus. They got a blood culture and urine culture too. His panel showed he was dehydrated since his CO2 was only 12. He was admitted to pediatrics for the night to get IV fluids. They will repeat his blood work tomorrow morning. Hopefully we will be home tomorrow.
Dana
Wednesday, July 30, 2003 8:30 PM CDT
Not too much to report. I just added new photos so check them out! Summer is flying by so fast. The boys only have a week and a half left of camp. I guess the last 3 weeks of summer will be filled with playdates. I can't believe school is right aroung the corner. Kyle will be starting Kindergarten. He is very excited. He amazed us by starting to read on his own. We are so proud of him!
Zackie has been doing well, aside from the occasional tummy ache. I started to give him maalox tablets when he complains, but he likes them TOO much. Now he will fake a tummy ache to get one...we are on to him!
Next Oncolgy appointment is not until October 7th...Zackie's 2 year anninversary of his BMT (oct 4th). He will be getting more immunizations this week.
Missing you Angel Colby.
Dana
Monday, July 14, 2003 9:07 PM CDT
The results are in...believe it or not, despite the pain my poor baby has, there was no sign of ANYTHING irregular in his gut. The GVHD was negative. So where does this leave us...CELEBRATING but also a little confused. There is no evident physical reason for his tummy pain. We will watch very closely what he eats and drinks to see if we can find a reason there. I guess any further pain will be treated by a tummy rub and many kisses.
Today is Stuart's birthday...Happy birthday sweetie! We went to the Blue Claw's game and had LOTS of fun. The boys couldn't wait to give their Daddy a birthday hug and to sing to him. We will have our little family party tomorrow since today was too jam packed.
Thank you so much tho the Leukemia and Lymphoma Society for giving us tickets to the ball game. They even had Buster the mascot come by to say hello and take pictures. He gave the boys an autographed picture. Zachary will be the ambassador along with another girl for the "Light the Night" walk on September 20th at the Blue Claws stadium in Lakewood NJ. We are now putting together our team and would like to ask you to join us. Please show your support by walking with Zachary and carrying an illuminated balloon in his honor. In the past kids with JMML were terminal with no survivors, now look how far they have come. We thank medical research for that, but the money needs to come from some where. Email me if you would honor us by joining our team "Zackie's Friends" and I will get you set up.
On Saturday we went to Laisa and Jim's place to celebrate Jacob's 1st birthday. What a great party. There were pony rides and a petting zoo. The boys had a great time and enjoyed also spending the day with the Dolan boys. At the end of the party we signed a balloon and sent it up to our special Angel Colby to celebrate him being "cancer free" for 1 month now in the protective hands of God. We miss you so much Colby. After the party we headed to Great Adventure and met up with The Gray family. The boys fought over holding Sami's hand. It was great to spend time with them.
On Sunday we got to meet the Polichetti Family. Tony also is a JMML survivor. His family was in from Kenucky to see his oncologist in New York. We are so glad they were able meet up with us. They are such an amazing family. When you visit his web page you will be amazed at how much Tony and Zachary look alike. Sorry we made you late for your party but I just didn't want our meeting to end. Hope we get to see each other again real soon. Please pray for Tony's continued success in his battle against JMML.
The last bit of news is our new addition to our family...Tabitha. Se is a spunky 10 week old kitten. The boys cant get enough of her. Stuart and Tabitha were instant best friends. I will post new pictures by the end of the week.
Missing you so much Colby James.
Dana
Tuesday, July 8, 2003 11:35 PM CDT
7/14/03 HAPPY BIRTHDAY STUART...WE LOVE YOU SOOOOOOOOO MUCH!***
***New photos...check them out!***
Happy 4th of July. I hope everyone had a wonderful holiday weekend...we sure did. On Wednesday we took the boys to Great Adventure to enjoy some rides. The kids had so much fun. We didn't get to watch the fireworks because it was cancelled due to high winds. The boys were so tired when we got home. Thursday morning we headed to Ocean City Maryland. We drove to Cape May and then hopped on the ferry to Lewes Delaware. From there it was a short ride to Ocean City. We went with our dear friends Laisa, Jim and their adorable son Jacob. The ride on the Ferry was wonderful...just a little too rough, very choppy water. There were a few dolphins but we missed seeing them...I think Laisa saw them though.
The hotel was nice and roomy...not perfect, but nice. We got to spend lots of time in the pool and at the beach. It was so hot out, which was hard on us all, but mostly Zachary. The cold ocean water and pool made it much more tolerable. Zachary has always hated the water and has mostly prefered to just sit on the edge with his feet in. We made him come in the pool to cool off, and to our surprise, he learned to swim! He wore a life jacket and was off swimming like a fish just like Kyle. I am so proud of him! Zachary was not to fond of the ocean, but the surf was quite rough. Kyle, on the other hand, had a blast playing in the waves. The 4th of July fire works were beautiful. Zachary was a bit nervous, but after reassuring hugs, he watched them. Kyle has gotten over his fear of them and enjoyed himself. A great time was had by all. I will soon post pictures (after I sort through the 150 pictures I took while we were there).
Zachary had a lot of tummy pain. It got so bad that at dinner one night he licked a chocolate chip cookie because it hurt too much to eat it. I hate to see him in pain. I pray for an answer and a resolution to this soon. Zachary will have his endoscope and sigmoidoscopy on Thursday...keep him in your prayers.
The boys have been having a great time at camp. The summer days have been quite busy. We went swimming yesterday with Grandma and Grandpa at their community pool. Zachary showed off his new swimming skills. Kyle is testing out going under water.
I will update again after Thrursday or once we know something from Zachary's procedure. Please check back for pictures.
Miss you sooooooooo much Colby James.
***7/10/03 Zackie did very well with the endoscopy. They found no visible ulcers (yeah!), but we wont have the biopsy results until at least Monday (they are also being sent to CHOP).***
Dana
Thursday, June 26, 2003 2:14 PM CDT
Zachary had his abdominal ultrasound yesterday. He was such a good boy staying still while they took a look. The people there were so nice and very patient with him. The doc called today and said it was all normal. Now we can rule out the gallbladder as the culprit.
The next step is endoscopy and the sigmoidoscopy on July 10th. Zachary will need to have an enema at 5am. He needs to be at the day hospital at Monmouth Medical Center by 8am. They will put him to sleep with propovol, which he tolerates well. They will take a look around and also take biopsies. If there is a question about GVHD, they will send slides to CHOP. I pray it is not ulcers since there is not much to offer him in the way of meds.
Thanks for continuing to check in,
Dana
Friday, June 20, 2003 1:10 PM CDT
Time is really flying! I would have updated sooner, but I haven't felt much like sitting at the computer and telling the world how wonderful my son is doing while my best friend just buried her's. Don't get me wrong, I dont feel guilt...My children are my world, but my heart breaks for the Cole family. I just dont understand why there was no cure for Colby. Why can't they figure this darn disease out and let these little souls stay with us on earth? I am happy that Colby is no longer suffering, but he was more than JMML. Colby James brought a smile to everyones face. He had such a charm about him. He never showed he was hurting...fun was more important to him than fear. Colby James Cole...I love you and will forever hold you in my heart. Thank you to the entire Cole family for allowing me to be part of your lives.
Zachary is doing great. We don't need to go back to CHOP until his 2 year post BMT in October. We are now dealing with the issue of tummy pain. Zackie will have an ultrasound to rule out any stones in his gallbladder. After that, he will have an endoscopy and sigmoidoscopy to look for ulcers or other GI problems. He continues to say his belly feels "hot" and "red". His cure for that is a drink of water. As you may recall, Zachary left BMT with MANY peptic ulcers that caused him to have a large bleed. We had hoped as he healed from BMT, that the ulcers healed too. Our biggest issue is he is allergic to zantac, prilosec and prevacid. So what does this leave us???...we are not sure. We pray his tests are all negative, but we do hope to get to the root of the pain.
Kyle has officially graduated from pre-kindergarten. What a cute ceremony they had! I am so proud of him and look forward to his next step as a kindergartener. He can't wait to go on the big yellow school bus. Both boys will attend camp this summer for six weeks in the mornings at the lake.
Dana
Monday, June 9, 2003 5:52 PM CDT
***Colby James Cole passed away 6/12/03 please pray for Laura, Jack and Cameron.***
***6/10/03 NEW PICTURES HAVE BEEN ADDED!***
What a wonderful weekend we had. I didn't want to let the Cole Family go home. We met up with Laura, Colby and Cameron at CHOP. We were also greeted by Sandy and Sami too. Sandy, the saint that she is, drove all the way from north NJ to Philly to help Laura care for Cameron. She even took him down to Great Adventure's Safari and back to my house in the evening. Feel free to visit Sami's page and tell Sandy how wonderful she is...I just can't say it enough. We also got to meet Maureen and Daniel. Daniel was transplanted for JMML a couple of weeks before Zachary was.
Zachary's visit went well...meaning he had great counts. He, of course, was a beast and we literally had to block the door so he didn't run out. He hates being at CHOP and I don't blame him. Sandy and Sami kept Kyle entertained. I had called CHOP 2 days prior to our visit to tell them Zachary had a enlarged node in his groin and I was a bit worried. Once the fear of relapse left my head, I remembered he had had vaccines one week prior in his thigh and this was most probably a response to that. His CBC was great and all my worries and fears disappeared. We also discussed the never ending sleep issue. They feel I make it worse by taking him into bed...I guess I create this...hmmm, I dont know about you, but I really need some sleep. If my bed is the answer...then so be it. I dont fully agree this is the cause for him waking being he screams in our bed too. She offered a sleeping pill for Zachary, but after the amount of meds I had to force on him due to the cancer, I NEVER want to make him take meds again. And so it goes.
After clinic, Laura followed me home. We arrived at the same time as Sandy. We ordered pizza and enjoyed the company of good friends. Colby was a bit tired from his day at CHOP, but Sami, Cameron, Kyle and Zachary kept going and going. Friday we headed to Toys R Us at the request of Colby. The kids had so much fun looking at the toys and deciding what to buy. What a thrill to see the kids smile so much. We made our purchases than headed back in the car to go on the Dolan's boat. Colby wanted to go fishing, so Bob and Lisa went out of their way to get him a fishing pole. The boat ride was fantastic. Just when I thought the smiles couldn't get any bigger, they DID! All 6 boys (Kyle, Zachary, Colby, Cameron, Ryan and John) got to drive the boat in the bay. Captain Bob was a great teacher! Luckily with the potty on the boat and the great snacks Lisa brought, the day was PERFECT. Colby didn't catch any fish, but he is now an experienced fisherman.
Once we got back home, we were greeted by my parents and sister Jill. I whipped up a quick dinner and we all sat and talked while the kids played. Colby scammed money from us all as he collected a toll everytime someone went into the family room. He went home rich! My friend Tina came for a visit in the evening to hug Colby, she too had cancer. They had an instant bond. The kids played well into the night. Once they all fell asleep, Laura and I chatted until 3am. I haven't done that since college! We never run out of things to talk about, I am so blessed to have her as a friend.
Saturday, we sadly waved good bye the the Cole Family. I wish I could keep them forever, but they had an anxious daddy awaiting their homecoming. Hopefully we will be reunited soon, maybe next time Jack and Jessica (Whateeka) will come too!
Sunday we celebrated my mother's retirement with a surprise lunch. After luch we headed over to Great Adventure to process our season passes and let the boys go on a few rides.
I will post new pictures later in the week.
Dana
Sunday, June 1, 2003 4:09 PM CDT
Laura, Colby and Cameron got here safe and sound from Philly yesterday. We are having fun, fun, fun. We miss you Jack and Jessica! More of an update at the end of the weekend.
Friday night was the American Cancer Society's Relay for Life. We had a great time, despite some bad weather. Zachary was invited to a "survivors" dinner before the walk. We met up with Tina (Kyle's T-ball coach), her son Jaiden, and her friend Julie. Tina and Julie are survivors of Hodgkin's Lymphoma. Tina was 16 weeks pregnant with Jaiden when she was diagnosed. She endured her treatment while pregnant...they are BOTH survivors.
After dinner, we headed out to the football field. Zachary and Stuart, along with over 100 cancer suvivors were going to be honored in a medallion ceremony. This year I was able to watch from the bleachers. Thank you Stu for allowing me to enjoy being a spectator while you tended to Zachary. During the opening speeches, it began to storm so we quickly moved inside the gymnasium. One by one, they announced each survivors name, the type of cancer they had, and the amount of time that has passed since they were diagnosed. Each person was greeted by a loud applause as a medallion was put around their necks. Since they went in alphabetical order, I had my camera all ready when they got to the letter "D". But the "D" names came and went, and still Zachary was sitting there. I was bummed that maybe they forgot him. Once all the names were called, they called up the three 3 year olds, including Zachary. Tears filled my eyes as the put the medal around his neck and handed him a teddy bear. They were lead to the front, along with Jaiden, to cut the ceremonial ribbon to start the relay. Zachary had this honor last year with the 2 other boys, so I was suprised to see him honored this year. I was truly touched. From there Zachary lead the first lap holding his Mommy and Daddy's hands...a moment we will NEVER forget.
We were then able to head back outside to walk around the track. All around the track were luminaries dedicated to those who are battling cancer, have survived cancer, or have become angels. Each one was decorated with love and illuminated with a candle.
I want to thank Tina, Jaiden, Julie, Jessica, Jonas, and Ilana for coming to this event to celebrate with us. A special thank you to all that donated money to the ACS to help them continue to provide support to families affected by cancer. Check out the picture page!
Dana
Friday, May 23, 2003 12:44 AM CDT
Seems like yesterday I wrote a journal stating the significance of May 23rd as Zachary's one year diagnosis anniversary. Here we are, the 2nd anniversary of that dreaded "d-day". 2 years ago we began this rollercoaster ride...Our baby had cancer. Not just any cancer, but a rare, difficult to treat, and often fatal form of leukemia, JMML. 2 years ago we never imagined Zachary as a preschooler, happy and healthy. We lived in fear of cancer, chemotherapy, and infection. Our lives were forever changed on this day.
Zachary had powers that we never knew. With the help of his "hero" brother, Kyle, Dr. Bunin, Nurse Anne and the outstanding staff on 3 east at CHOP...My baby is a "survivor". We are forever grateful for Zachary's second chance at life. Now he is a happy and healthy 3 1/2 year old. Zackie barely remembers transplant and his days living on 3 east. He only associates Dr. Bunin with venipunctures and not hospitalizations. Once in a while he will mention his "tubies" and saying "Mommy slept in my bed at CHOP". He will never truly know the fears we had and the tears we shed...for that I am grateful. Zackie...Mommy and Daddy love you more than you know and thank you for fighting so hard. Thank you God for nearly 20 months of cancer free days...we beg for millions of cancer free days ahead.
Last weekend we had a great vacation at Hilton Head South Carolina. The kids were awesome on the ride down and back. We got to spend time with Nana and Pop pop (Stuart's parents), and Aunt Julie (Stuart's sister) , Uncle Matt and Amanda . We thought it would rain while we were there, but were pleasantly suprised by the warm sunshine. The boys played at the beach and at the pool. It was a very relaxing vacation. Thank you Nana and Pop Pop for having us!
I just added pictures, so check them out. Soon I will post vacation pictures (after I sort through all 140 of them!).
Dana
Thursday, May 22, 2003 9:34 AM CDT
I will write an update later, but I just added new photos. Check them out!
Monday, May 12, 2003 1:16 AM CDT
I hope everyone had a great Mother's Day... I sure did. We were lucky to have the Gray Family spend the day with us. Dan is an AWESOME cook. Sami is such an angel. Sandy had her dressed in the most precious dress, but Sami begged to wear Zackie's clothes instead. We are so proud of Sami for becoming potty trained. Grandma, Grandpa, Aunt Laura, Uncle Scott and cousins Ryan and Jake joined in on the fun. What a feast we had!
Last week I asked Zackie what he was going to buy me for mother's Day. Of course, as a 3 year old, his answer was a toy. He then thought that maybe he would buy me an American Idol toy (he knows I love that show). Stuart took the boys to the store and they bought me 2 American Idol CDs. The boys were so proud of themselves.
Friday was a very special day for Zachary. He was presented with an award at a Leukemia Lymphoma Society luncheon. He was VERY eager to accept it with pride. We also received a call from the Make a Wish Foundation wanting to interview Zackie for his wish. Zackie, when asked for 3 wishes, states 1) go on the Disney boat with Mommy, Daddy and Kyle 2) bring a drink on the boat 3)bring his spiderman toy on the boat...point taken, he wants to go on the Disney cruise. We will plan for the trip next spring. We look forward to meeting his wish grantors when they come to officially interview him. I am forever grateful for all that has been done for Zackie and our family.
Zachary continues to be a horrible sleeper. He spends most nights in our bed. I guess after a while you will do just about anything to get some sleep. He has not complained of much belly pain in a while, so our plans to further investigate are on hold for now. He will go for his Oncology visit on June 5th at CHOP.
Dana
Friday, May 2, 2003 3:15 PM CDT
Finally...we are cootie free. The kids feel much better. Zachary was found to have a sinus infection. No more fevers! They both have resolving runny noses and a bit of a cough. Zachary had blood work on Wednesday at my request and the results were normal (WBC 7.9, Hbg 13.0, and Plt 303). All in all...things are better here.
I was able to spend some time with Colby and Laura Cole at CHOP yesterday. I think I wore Colby out. I hope to visit them again soon. Please keep praying for them.
Kyle is doing MUCH better at T Ball. He even got the game ball! He is hitting better and actually made a play on the field (he usually stands in one spot and wont move). He makes us so proud.
We are walking in the "Relay for Life" ACS walk on May 30th to honor Zachary and others who have and still do battle cancer. Email me if you would like to sponsor us and/or buy a luminary ($10) to honor someone you know with cancer. At 10pm, they light all the luminaries...it is a touching ceremony. All checks are made out to ACS and donated directly there to help find a cure for cancer.
Please pray for all of the JMML families and stop by their sites to say hello.
Dana
Sunday, April 27, 2003 4:35 PM CDT
Well you know my kids and the weekend...Never a good combo. Zachary has been very sluggish since we left the Cole house. I figured it was just too much for him. On Friday night, Zachary spiked a temp of 102 under his arm. These fevers have been ongoing through the weekend. He really has no symptoms...just a mild cough. He feels great once the motrin kicks in. He was still able to go to cousins Ryan and Jacob's birthday celebration on Sat and Dean's birthday party today. He hasn't needed motrin since 6am, so hopefully this is the end of it. He has been sleeping all afternoon though, but no fever.
As if that was not enough...Kyle had two tick bites during the week. On Saturday, there was a red ring around one of the bites. We were concerned it was a sign of Lymes, but the doc felt it was an allergic reaction the the tick bite (it was not a deer tick). I put cortisone cream on it and right away the redness was gone...whew. Needless to say, we will be spraying the yard for ticks.
Please pray for Colby as he is battling some unknown infection.
Dana
Tuesday, April 22, 2003 9:51 AM CDT
***Keep checking in for new pictures***
What a great weekend! We packed up the Doctor family (minus the dog and cat) and headed west to Uniontown PA...to the Cole Ponderosa. The trip wasn't to bad, especially since Stuart drove the whole way. The kids were great (thanks to a TV/VCR in the car). When we got there we were greeted by a big sign...with cows and all! I always make fun of "farmer" Jack having a huge barn with NO animals in it, so I asked that he get a cow in there for me to milk. Well these cows were made of wood...Jack (and Virginia) are so goofy.
We got to The Cole's around noon. We exchanged many saved up hugs and kisses. The kids had a great time together. Kyle and Cameron were instant best friends. We went to Maxx's, a chuckie cheese type place, and the kids ran, and ran, and ran! Colby spent most of his time with Stuart and Jack winning huge amounts of tickets. The other boys zipped around trying to see, touch, and play with everything. Laura and I left to greet Jessica and the moon bounce guy, and the "boys" all stayed at Maxx's to play and have pizza. Jess and I ran out like kids to jump in the moon bounce, but it was already deflated...so off to the trampolene we went. (sorry I broke your leg Jess). Laura joined us on the trampoline and I dont think I have laughed that hard in so long...all our troubles melted away.
Friday night was filled with fun, dancing and wine...and more wine. Kyle stayed up til 2 am playing playstation...nascar of course! The other boys fell asleep one by one. We had such fun together...something we all really needed. Saturday the Cole's wanted us to meet their closest friends and family...so over came about 100 people! The Cole ponderosa turned into a carnival...a Easter fantasy land. There was the moon bounce, the Easter bunny, A guy making balloons, a huge Easter egg hunt, and a big petting zoo including a pony to ride. When they do things...they do it big. Their friends and family are such wonderful people and I was thrilled to put the names with the faces. You should all be so proud of the support you have given to the Coles. At night we had a big bon fire and toasted marshmellows. We all wound up back at the house and I fell asleep on a little couch with Zackie and Kyle and Stuart fell asleep on the recliner.
On Sunday the Coles church welcomed us for Easter services. Jack deeply touched our hearts as he read the words to the song "he's my son" with it playing in the background. The boys made arts and crafts up in the nursery while we prayed with all our might for a miracle for Colby.
Unfortunatly, the time came, and we had to go home. I wish we could have stayed forever. We thank the Cole family for having us and for going above and beyond in their hospitality. We thank Virginia and all the people that helped make the Easter party a success. For all of you that came to meet us...you have truly touched our hearts. To Laura and Jack...we love you so much and pray everyday for a miracle for Colby. Thank you for the Easter baskets and gifts you gave the boys and for openning your home to us. To Jessica (what-eeka)...thanks for the Easter baskets for the kids (with the plastic peanuts), your bond with Colby is so sweet, they are so lucky to have you (How's that leg?). To sweet Cameron...you are my little man. Only a boy who loves his brother that much will tell me the rules of the house, "if you pick your nose you will need to wash your hands". Colby James...what can I say (with out crying), you have more endurance and spirit than anyone I know. Thank you for your strength and will to live. You are my hero (but you do owe me that neck rub for making that motorcyle for you).
The trip back went well. We all didn't fully recover until late yesterday.
Please pray for the Cole Family.
Have you hugged your kids today?
The Doctor Crew
Friday, April 11, 2003 3:35 PM CDT
I guess it has been a bit since my last update, but not much has happened. We had a visit from Nana and Pop pop last weekend. They were in Virginia watching Amanda (our neice), so they all came up to visit for the weekend. The boys were in all their glory. On Saturday was opening day for little league. It was rainy, cold, long, and unpleasant. The T-ball kids didn't have a game so they did their pictures and went home. We then went to Loew's for their grand opening. They had Jimmy Johnson's car there. Kyle was so excited to see a nascar car up close.
Speaking of Nascar...the boys want to thank Dale Earnhart Jr for sending them autographed pictures. They will be treasured!
Next weekend we are taking a trip to Uniontown PA to visit with the Cole Family. As you all know, Colby has the same disease as Zackie and our families have grown very close. Colby continues to battle JMML, please keep him in your prayers.
The weather has been a bit odd...One day it is warm and the next it snows. Recently it has been rainy. Hopefully it will clear by tomorrow so Kyle can play his first T-ball game...the real first one was rained out.
Zachary continues to complain of stomach pain. He hasn't had anymore mouth pain in a while. I will call CHOP to discuss what may be causing the pain. Certainly, the pain is tolerable and he remains a very active 3 year old. The sleeping has gotten worse to the point that I over slept this morning and missed taking Kyle to school. I wish we could find a resolution to his sleeping issues.
I will try to update the pictures soon...so keep checking in. Don't forget to sign the guestbook, we would love to see who still visits.
The Relay for Life Walk is on May 30th in Manahawkin...Anyone up to an overnight walk??? We sure are! Come join our team and show your support. Email me for more info.
Zachary will be honored at a lunch from the Leukemia Lymphoma Society...I am so proud of him.
Dana
Wednesday, March 26, 2003 10:03 PM CST
Things are going great here. We are really welcoming spring. Kyle and Zachary are having a blast playing outside on their Power Wheels. They can't get enough of playing at the park and meeting new friends.
Zachary's health has been great. He still occasionally complains of stomach cramps, but with some TLC it passes quickly. Overall his nights have been peaceful. We have learned not to get to excited after a good night's sleep, because he still occassionally has a very bad night...last night being one of them. With the soothing sunshine comes the itchy skin and continued skin breakdown behind his ears...GVHD??? Who knows! He has never officially been diagnosed with GVHD and has never required anymore than a topical cream to ease the discomfort. As the weather gets warmer and he is running and playing more, we get that slap in the face that his little body is still healing. He still tires very easily and requires a few much needed periods of rest. All in all...he is a normal 3 year old, something we were never sure he would live to be, indeed we are BLESSED!
Kyle continues to love pre-K. He can't wait to be a big boy in the fall and go to Kindergarten and ride the bus. I, on the other hand, wish he would slow down. I don't want him growing up so fast. He fills his week with play dates, t-ball, gymnastics, and soccor. He can often be found "surfing the net" to all his favorite children's web sites. Although he lags behind in his sports ability, his determination makes me proud. After a hard practice at T-ball and all the tears he sheds, he is already looking forward to the next practice. Though it kills me to see him struggle, he makes the choice to go on and better his skills. Nascar continues to be his major fascination. I believe he knows EVERYTHING there is to know about nascar. Dale Jr is still his favorite, but Kurt Busch is in a close second. Kyle just had his kindergarten physical and weighed in at a whopping 42 pounds and stands 41 1/4 inches short...oh I mean tall.
Have you hugged your kids today?
Dana
Thursday, March 13, 2003 4:26 PM CST
***3/16/03 New photos added on the top and bottom of the photo page***
Zachary is doing MUCH better now. We got the results from the stool culture a couple of days after he was discharged and it WAS the rotavirus. It seems to have worked it's way out of his system. He only has occasional stomach cramps.
Today Zachary had his 3 month oncology follow up visit at CHOP. Every thing looks great. Luckily Dr. Bunin is quite talented at examining a wild 3 year old on the run. His counts are as follows WBC 11.7, Hgb 13.7, Platelets 606,000 (not a typo!) and his ANC was over 5000. The high platelets were from having the rotavirus, a great sign that Zackie's marrow can hold it's own. I was a bit annoyed that they couldn't do a finger stick instead of a venipuncture. I feel bad that I promised Zackie no "ouchies" on his arm. The lab said that he needed other blood work in addition to his CBC, when I was told he only needed a CBC. Well Zackie was so beside himself that I didn't argue. I did ask Dr. Bunin and she said she ONLY ordered a CBC...UGH. Next time NO "ouchies" baby...I promise! (Zackie doesn't mind a finger stick).
I brought Kyle with me to CHOP for the first time since he was tested to be Zachary's donor. I knew that Colby was going to be at clinic and thought it would be fun to have all the kiddies together. Boy was that a bad idea. Kyle and Zachary were so wild and defiant. Zachary is always bad at clinic and I guess Kyle followed suit. Kyle did enjoy watching Colby play his playstation and loved running around with Cameron. Zackie just did his thing. Being at CHOP stresses him out...for very good reason.
It was great to see the Cole family. I just wish I could have spent more quality time with them, but the kids had a different plan. I was so glad to meet Jessica...I promise I am not always that frazzled. Colby looks great and he even felt good enough to make fun of my hair. I took lots of pictures and will post them soon.
Next oncology visit is June 5th. I plan to get Zackie back on track with his immunizations.
Dana
Tuesday, March 4, 2003 5:51 PM CST
***3/06/03 ZACKIE IS HOME SAFE AND SOUND AS OF YESTERDAY. WE ACTUALLY HAD TO FIGHT HIM TO TAKE OUT THE IV, THEN HE SAID HE WANTED TO STAY AND NOT GO HOME! HIS LIVER COUNTS ARE BACK TO NORMAL WITH A BILIRUBIN OF 0.1. I GUESS ALL THOSE WACKY COUNTS WERE RELATED TO DEHYDRATION. WE WILL SKIP SCHOOL TODAY, BUT PLAN FOR A "NORMAL" WEEKEND. THANK YOU FOR YOUR PRAYERS.***
Well when Zackie does it...he does it good. As you guys know, Zachary got himself an aweful stomach virus. He was vomiting on and off with some diarrhea all weekend. We went to Grandma and Grandpa's house on Sunday to celebrate Aunt Jill's birthday. He was feeling aweful and it started to be clear to us that he could not wait for Monday to see a doc. I guess he heard the word hospital, because before we left he kept down soda, some grapes and then later some cereal and pedialyte. He got his energy back before bedtime so we figured the worst was behind us...guess not. He woke up at 12:30am Sunday night and began vomitting atleast once an hour. By morning he was VERY out of it.
I called the pedi and off the the ER we went. The poor kid couldn't even stand up to vomit in the toilet at the hospital. They quickly drew blood and started an IV. They gave him 2 saline bolus'. They also bolused him with dextrose because his blood sugar was low. (Zachary has a condition called ketotic hypoglycemia that makes his blood sugar fall when he doesnt eat and makes his body think it is in starvation making ketones go into the blood and urine). They big time rebounded his blood sugar...all the way to 572! His labs showed he was mildly dehydrated and making too many ketones. They made the choice to admit him due to him being very lethargic.
Overnight, they hydrated Zachary with IV fluids. He still would not sit up or talk to me. He was easy to arouse, but then fell right back to sleep. In the morning, they had a very hard time drawing blood form him, so his 7am labs were drawn around 11am. They were hoping to get a repeat CBC (which looked great aside from the 15% bands...seen in infection or virus), chem 7 (electrolytes), and a liver function test (his bilirubin was a little elevated???). They only got enough blood for the chem 7, which the results from that were worse than yesterday. They decided to keep him one more night.
At 2pm they gave Zachary another normal saline bolus and tylenol (for his horrible headache). Once the bolus was done, he perked up. He almost seemed like he had just woken from a deep sleep. He wanted to play and walk, none of which he could or would do before. His main problem now is he has frequent loose stool and bad abdominal cramps. Every time he poops he shuts down, closing his eyes and lying down. As of late afternoon, the stool began to be green and mucousy with blood in it. He sure keeps things interesting. They cultured the stool and also cultured for the rotovirus.
What is important is Zachary is back to his normal self, a sign he is greatly improving.
Thank you Lisa for ALWAYS being there for me in a flash to care for Kyle and keeping me calm. Your friendship is worth more than gold.
Kyle is hanging with Aunt Jill now. I just came home to get a shower while Stuart is at the hospital playing with Zackie. Grandpa will take over tomorrow with Kyle and we will hopefully be home by lunch time. Kyle broke my heart when he told Aunt Jill that he thought that Zackie's leukemia was back...Thankfully it is NOT.
Did ya see GOD gave the Cole's a miracle...Colby has 98.5% donor cells. THAT'S COLBY!
Dana
Saturday, March 1, 2003 8:28 PM CST
So here's the weekend...we all know what that means in the Doctor house...This time Zachary is the one that is sick. He started to complain of stomach cramps on Thursday, by Friday he had frequent loose stool. As if that wasn't enough, we graduated to vomiting by Friday evening. He only has a low grade temp that tylenol keeps in check.
Stuart woke the boys up early to go to the dentist...what a fun family outing. Zachary seemed ok when he woke up, so our hopes were that this virus was behind us. He REFUSED to cooperate with the densist, but the doc got a good enough peak to say he had NO caveties and his teeth look healthy and unaffected by his leukemia treatment. As for getting his teeth cleaned, well no way was Zachary going to let that happen. He fought with all his might until he finally threw up. So much for that. Kyle did awesome and got a clean bill of health...Mommy and Daddy too!
Well the throwing up and loose stool continued through the day. Poor Zachary looked so wiped out. We are keeping an eye on his output to make sure he doesn't get dehydrated. One of the perks of his having had cancer is we had compazine in the house. He received a dose with benadryl tonight and was able to keep down 3 ounces of juice...so far. We will see what tomorrow will hold.
Welcome back Jack! Your silly posts have been missed. You and Laura are my heroes.
Have you hugged your kids today????
Dana
Monday, February 24, 2003 4:36 PM CST
I have tried a few times to update, but it hasn't been easy. We got the news on Friday that Colby, who has the same disease as Zachary has relapsed for the 2nd time. It makes it that much harder to update how well Zackie is doing and how blessed we are, when The Cole family is facing the hardest battle. I wish everyone could have an outcome like my family has had. We consider OUR family lucky to have our child win the battle against cancer, while others consider their selves lucky to have a healthy child never having cancer...I guess it is all relative. I knew when I began to meet other families with children with cancer, especially JMML, that some will not survive...but then I met Colby and his family. It is one thing to know of a child who may never get to grow up and how deeply that hurts, but when you really know them and love them, as I do the Coles, it is devestating. I am lucky to have the Coles in my life and will pray for a miracle for them, even though I know very well the miracle was having Colby here on earth regardless of how long he is here. Please lend your support and prayers to the Coles, the web link is at the bottom of the page.
Zachary's next Oncology visit is March 13th...No venipuncture!!! They can do the CBC with a finger stick which Zackie doesn't mind at all. Maybe if we are lucky we can space out the visits to CHOP even longer than 3 months.
Have you hugged your kids today?????
Dana
Monday, February 17, 2003 7:00 PM CST
***NEW PICTURES ADDED 2/18/03***
Let it snow, let it snow...let it snow! My gosh, I am not sure I remember ever seeing this much snow. AMAZING! I had to work at 7 pm last night, but I left REALLY early and arrived at 4:30pm (quite shocking...me early!). Driving in was not fun, but I got there in one piece. It was fairly quiet in the hospital. We had fun watching the snow falling. By morning the snow drifts were taller than me (that is not too hard though). Getting home was a different story. I had to leave my minivan at the hospital and a nurse's son drove me home in his 4 wheel drive truck. Cars were stuck all over the place. Thank you Lynn, for taking the "wild" ride with me home. Bob just took Stuart to the hospital to pick up my van...everyone is home safe and sound. It was a blast watching Dakota play in the snow, all you could see is her head and tail...she is a black lab. Thank you honey for the hard work you did clearing the driveway and managing to make sure I got to sleep too.
So it is the weekend...a holiday...a MAJOR snowstorm, so you know what follows...oh yes...Kyle has strep throat! This kid can't seem to catch a break. We caught it super early, so his symptoms are minimal. Zachary is so far ok. I am glad to keep the pharmacy in business with all the co pays! As I always say, things could be worse...we all know that.
We were so lucky to have Nana and Pop pop visit for a short while. They picked the WRONG weekend to come to NJ from Florida. They got to us on Friday evening and were forced to leave very early Sunday Morning. They did have stops before and after in VA to visit Julie. Now they are heading back to sunshine! The kids loved their visit.
I hope to have new pictures up soon...so keep checking in. Don't forget to sign the guestbook.
Dana
Thursday, February 13, 2003 1:23 PM CST
The results of the sleep study are in...what have we learned...NOTHING! Well, I shouldn't say that, we DID learn that nothing is physically wrong with Zachary. As far as apnea, he had 6 episodes in the 8 hours with only one causing his pulse ox to drop to 89%. This was well with in normal limits. He had 100 arousals lasting less than 15 seconds, this is high normal. Zachary also had 13 awakenings, or arousals that lasted more that the 15 seconds...also high normal. So even though my child screamed his little head off during the study, the EEG showed NORMAL sleep. Maybe they should put the leads on Stuart and I and see this is NOT normal sleep! So what does he have...night terrors. He is not awake or aware of these...but we sure are. I am thrilled that physically he is fine, but where do we go from here. Even the jerky movements he has were with in normal limits.
We plan...maybe...to have a follow up appointment because the team still remains concerned that Zachary requires so much sleep. Maybe some nights he is fully awakened. Last night he was up ALOT! He was banging on his door. I finally got to the point where I took him in bed with us just so we could get some sleep!
All in all, we are blessed Zachary is happy and healthy!
Next oncolgy visit March 13th
Please pray for Colby...and pass that request along. His web link is on the bottom of the page. Happy 5th birthday sweet Colby...praying hard for MANY more to come.
Dana
Tueday, February 4, 2003 10:33 PM CST
All is well on the home front. No fevers! The boys are both on Augmentin for now. Kyle's last dose is tomorrow and Zachary has a week left. The only issue with Zachary is frequent...very frequent loose stool. He has been great about getting to the potty in time. He was in a wicked bad mood today...I would be too though. He perked up in the afternoon after his nap. Kisses, hugs and Buzz Lightyear fix anything...though Grandma's soup would work too (hint, hint).
We still have no results yet on Zachary's sleep study. I did get a call today about having him in a study at CHOP so they must have found something. Last time I agreed to a "study" while my kids were nagging me and I was only half listening, I agreed to having him featured on ABC Primetime! Thank god that didn't pan out. This time they are sending info in the mail for me to read FIRST! I just wish they would tell me what intrested them so much about Zachary's sleep habits.
So we are all on the mend...for now.
Pray for Colby, Connor and the rest of the JMML kids along with the way too many families coping with childhood cancer.
Dana
Sunday, February 2, 2003 11:30 AM CST
Does it ever end? Zachary was complaining of being very tired yesterday. I thought it was because he was up a lot the night before with nightmares. After his nap, he was burning up. I took his temp...103.8 UGH! As you know, my kids get sick at the most inconvenient times. Here it was Saturday afternoon after pedi hours, Sunday they are closed, and Monday through Wednesday, the docs in NJ are having a "work slow down" for lower liability insurance. I called the pedi service, and luckily one of our pedis was covering. She phoned in an order for Augmentin to my pharmacy due to the fact that Zachary has had an exposure to strep throat. Unfortunately, the pharmacy closed so we had to wait until today to pick it up. I will bring him in to the office on Monday to be seen...they are seeing all the sick kids during the strike.
Zachary's temps have ranged between 101 to 104. Tylenol and advil have kept it in check. His only complaint is a tummy ache which he begs I "make better". His throat is a little red, but doesn't hurt. Zachary has only been off of antibiotics for ONE week! My family can't seem to catch a break...but we all know things could be worse.
Kyle and Stuart are feeling much better. We are having our basement framed today. It will be cool to have extra rooms down there.
Sorry I couldn't visit you and your mommy today Colby...god had a different plan. Stay strong little guy...you are "Amazing Colby"!
Dana
Thursday, January 30, 2003 at 10:49 PM (CST)
***The results are in...Kyle does NOT have mono or Lymes. His Sed rate was VERY high, but that alone doesn't diagnose anything. His platelets were a wopping 408k, more of an indication of a virus. Everything looked fine. He must have gotten a virus that attacked his sinus' and ears. Only time will heal that. The enlarged nodes show his immune system is hard at work clearing out the infection. He is getting better everyday***
Oh boy am I tired! Zachary's sleep study went well. We got there only 5 minutes late (I am consistant huh Lynn?). Zachary checked out his room, unpacked, and made himself at home. From there, we went to 3 East to visit Jack, Laura and Colby. Jack was hanging out in the hallway, leaving Colby and Laura to get some much needed sleep. Zachary went right to the bubble wall, the only thing he liked at CHOP. He was greeted by many nurses that have seen what a long way he has come. At the end of the hallway was Laura, up from her nap. He went running to her, then realized he had NO idea who she was, so he came running back to me. Laura went from long hair to VERY short hair...kinda a family theme. Zackie then warmed up and went to share a bagel with her. When she walked away he wispered to me "is that Colby's mommy?". We got to peak at Colby through his window in the door. Zackie was bummed he couldn't go in, but had a ball polishing of Colby's tray and playing with the light switches in the hallway.
From there, Zackie and I went back to the sleep clinic to get hooked up. We got ready for bed first and I made sure he went potty before getting hooked up. He was such a trooper with all the stickers they had to put on him. I took digital pictures so he could see what he looked like. We even put stickers on his Buzz Lightyear toy. He pretended his pulse oximeter was a laser. After all the electrodes were on, he decided he had to poop. UGH! That was not at all fun, but we did it with out taking off his stickers...now do you think he pooped?...oh no! What a faker, always testing his limits. Zachary watched Toy Story 2, then fell asleep.
I watched Zachary sleep for a bit. He did those jerky movements I told them about, so now it is recorded and maybe they can tell me why he does that. I then fell asleep and woke to him talking and crying. The tech came in and asked me if he was asleep...he was. Zackie then went into a full blown fit, hitting, screaming, all with out opening his eyes once. This went on for 20 minutes and finally the tech said I could sleep in his bed (Zackie's not the techs...are you following me?). Zackie finally calmed down, had a few more crying fits over the next hour, then peacefully slept. I then hopped in my own bed (not too fond of a camera on me while I sleep). He randomly cried over the next few hours. At 6am, they woke us up and told us we could go home. At least the sleep disorder team has a study on him in his true form. Maybe they can tell me why he has a hard time sleeping.
Kyle had a GREAT day. His appetite was strong as was his stamina. I was thrilled to see him so active. The nodes even seem a bit smaller. I will get the CBC results tomorrow and may have to wait for the rest. I think he just got run down with a virus. I think Grandma's chicken soup was the cure.
Stuart is now sick. Poor guy. Hope you feel better soon Daddy! We love you!
I never really look at the amount of hits on this web page...but I noticed there were 250 in just 2 days! Thanks for continuing to check in on us. Please sign the guestbook. We print the entries and we plan to give it to Zackie when he is older. Do sign in and say hello!
Please pray for Colby!
Dana
Tuesday, January 28, 2003 at 10:11 PM (CST)
***1/29/03 Kyle did great getting his blood work done. He did cry, but stayed VERY still. On the way there he said he would be strong like Zackie and Colby...he is amazing. We wont have all the results until Monday. He is VERY tired and slept until 11am.***
Life is never boring in the Doctor household. Last entry I told you how Zachary recovered well from his sinus infection, but Kyle was slower to recover...well Kyle is still not feeling very well. He is very tired and has on and off fevers. He had a great morning, he was very lively and played with his best friend Ryan. I left him there so he could play while I picked up Zackie from school. When I went to pick him up, Lisa felt he wasn't feeling very well. He was kinda laying around...never the case when you get him together with the Dolan boys.
I took Kyle to see the pediatrician. He has a double ear infection which makes NO sense being he just finished taking omnicef. His glands are swollen, including glands by his collar bone and on the side of his neck. The concern is that he may have mono. He will go for blood work tomorrow. He will get a CBC, EBV titres and Lymes test (he has had exposure to lymes twice and required treatment). Needless to say, the CBC is due to his brother having leukemia...There is no way he has this!, but mono is most probable. I feel so bad for him, but he is not complaining.
Zackie is doing great...he really bounced back quickly. I must share with you the report I got from his preschool teacher today. In the middle of the classroom, he pulled down his pants and underwear, backed up bent over, to his teacher yelling "Miss. Kristie, Miss. Kristie" she looked over to be greeted by his tushy and said "what". Zachary than asked "do I have poop in my butt?", controlling her laughter, she said "Uh, No", and he responded "I didn't think so!"...pulled up his pants, then went on his merry way. Oh kids are SOOOOOO cute! UGH!
Tomorrow is Zackie's sleep study. I am sad I can't spend time with Colby until Kyle is better. EBV or mono would be detrimental to him. I will stay outside the door and blow kisses! Tomorrow is Colby's transplant day. His link is at the bottom of the page...please stop by and say hello and wish them luck.
Dana
Thursday, January 23, 2003 at 09:30 AM (CST)
***New photos uploaded today, check them out 1/24/03***
Hi everyone. Not too much to update here. The kiddies are just getting over being sick. I must say Zachary did the best at recovering. Finally I am feeling better too. I am so grateful for all the people that check in on us. We are so blessed.
Please note the new email address on the bottom. While you are at the bottom of the page, take the time to stop in and say hi to Colby.
Sleep study is on Jan 29th.
Next oncology not until March 13th.
I plan to update the pictures soon.
We missed you Daddy, the boys can't wait to see you tonight!
Dana
Thursday, January 16, 2003 at 02:47 PM (CST)
Oh what a fun week it has been, full of fevers and runny noses. I guess we are really just knee deep in "normal" kid stuff. Kyle started to have a fever Tuesday evening. He just felt "blah" and a bit of a tummy ache. I figured we would just ride it out. I knew his ears were clear thanks to my handy dandy home otoscope (every parent should have one). Well today, Zachary woke up crabby with a hoarse voice and a drippy nose. After school, I checked his ears...and wouldn't you know it, he had a big time infection in the right ear. So I packed them both up...mind you Kyle now has 103.7 temp...and off to the pediatrician we go. Kyle has a sinus infection and Zachary has a sinus and right ear infection.
Now because Kyle has mucous in his tummy from the sinus infection, his tummy hurts and he has a very poor appetite. I reported this to the doctor and she turned to Kyle and asked him if he ate lunch today. His response to her..."no, my mommy has no money." Oh kids say the the cutest things...ARGGGGGH! I cant believe he said that. I DID offer lunch, he said he was too sick to eat. I asked why he told the doctor that, he said he was just kidding...CUTE! Well atleast they sent me home with lots of medication samples!
Praying hard for our JMML family...especially Colby, Connor, and Libbie.
Dana
Thursday, January 02, 2003 at 12:00 PM (CST)
***Check out the new pictures added on Jan 7th***
Happy New Year Everyone!
We hope 2003 year brings healing and good health...even better a cure for cancer!
Things are going well in the Doctor household. We are bringing in the new year with no more daily meds for Zachary. What a beautiful taste of normal. Zachary has been in remission now for 455 days! Quite amazing. He is quite the ham. He now knows how to try to play mommy against daddy, by saying..."mommy said yes" or "daddy says yes". Kyle follows suit by saying "but daddy always lets us...". And so the fun begins! The boys have taken a sudden liking to board games. Some how Zachary usually wins!...I will need to watch him closer, but I dont think he is cheating.
We had a great time on New Years Day. Grandma, Grandpa, Aunt Jill, Aunt Laura, Uncle Scott, Cousins Ryan and Jacob, the Sussman family, and the Gray family all came over to celebrate the new year. The kids had a wonderful time playing. We were so happy to have Sami over. Zachary talks about her all the time. You guys should see all the hair she has! Actually you will, once I post pictures.
Zachary continues to battle nightmares. I think, though I am not sure, we may go ahead and do the sleep study on the 29th. I will call the sleep study team and discuss his problems further. Just when we think we know what will help him, we find out we were wrong and back to square one.
Please say extra prayers for our JMML friends. Some of them are fighting tough battles right now.
Our next visit to CHOP is March 13th. Next week we will continue with Zachary's vaccinations.
So here we are 455 days down...millions to go!
Dana
Saturday, December 21, 2002 at 04:06 PM (CST)
***Entering 2003...NO MORE MEDS! Zachary's IGG was closer to normal so we can stop the penicillin! We are blessed!***
No news, is good news. Sorry I didn't get update after our visit to CHOP. Another blood count...another blessing. Zachary remains in remission. His WBC was 10, Hgb 13.2, platelets 365. We dont need to go back for 3 more months. They only results I still need are the IGG levels. I think they will be normal, or more normal than the previous. Zachary was a real pistol at CHOP. He did not cooperate one bit with Dr. Bunin. Though his behavior aggravates me, I am happy he has that energy...18 months ago things were very different.
Thank you to Ocean of Love and the Emmanual Cancer Foundation for their generous gifts to the boys.
There are new pictures from Disney and the snow on the picture page.
Please continue to pray for the Cole family as Colby head in to CHOP after Christmas for a second BMT.
There are so many families out there whose lives are in turmoil due to childhood cancer. We are blessed that Zachary is a survivor. We pray for a cure!
Have a happy, healthy and safe 2003.
Dana, Stuart, Kyle and Zachary
Sunday, December 15, 2002 at 09:31 AM (CST)
Not too much to report here. I was on the site adding some photos...check them out. The boys have been doing well. Kyle had gotten a 24 stomach virus. Thanks to lysol, so far the rest of us were unaffected. Zachary has been doing very well. We resceduled his oncology "well visit" to this Thursday. I only expect to hear great counts. He will also have his IGG levels drawn to see how his immune system is functioning. Praying hard for a lasting remission!
Please pray hard for Zackie's friend Colby. He has been cooped up at CHOP. It is sad to see their family torn apart like this. The link to his site is at the bottom...stop by and say hello!
I was floored to hear how many new cases of JMML are being treated at CHOP. If you have been directed to my site by the nurses, please email me...I will help support you through this journey. Read through Zackie's journal. Kids DO survive. If you click on the JMML yahoo link above, you will see you are part of a larger family. There are many resources there. Hope to see you there!
I will update on Thursday. Please pray for Zachary's counts, for the Cole family and the rest of JMML kids as they try to make the best of the holiday season.
Dana
Friday, November 29, 2002 at 11:43 PM (CST)
Whew...Zachary's counts were fine today...ok, better than fine. I was worried he was tired and may be anemic...well his Hgb was 13.8, on the high side! His platelets were a woping 465,000 and his WBC was 9.1 with an ANC of 4002. So I was just being a worried mom. Funny enough, my chief complaint was him being tired, the whole time at CHOP he ran around like a nut! Well I guess I am not the first mom to worry needlessly and I wont be the last.
We did get to go up to see Colby. He had his spleen out in preparation for his second Bone Marrow transplant in December. It was awesome to see Jack and Laura. They are truly amazing people with enormous spirit. Cameron gave me big hugs and Colby told me to "get lost". I don't blame him, he has been through so much and endures so much pain. Colby has a true fighting spirit. He is bigger and BETTER than JMML.
Thank you Aunt Laura and Uncle Scott for watching Kyle. Glad to spend time with you guys and my adorable nephews.
Next CHOP appointment is Dec 26th. We may test Zachary's reaction to the DTP vaccine to see if his immune system is responding by making antibodies. I guess if he isn't, than he will need IVIG. Who knows, not to worry now.
Stuart thinks he figured out Zachary's sleep problem...he has to pee at night. He isn't awake enough to tell us, but goes if you take him to the potty. Jack and Laura confirmed this theory. Either way, I think we will skip out on the sleep study.
Dana
Wednesday, November 27, 2002 at 11:23 AM (CST)
Now I have a few minutes to tell everyone about our vacation. On Thursday the 14th we left to take the long drive down to Pompano Florida. It took us close to 24 hours including our stops along the way. We did drive through the night. We stopped in Virginia to have dinner with Stuart's sister Julie, Matt, and Amanda. It was so nice to see them. The car ride wasn't too bad. The kids did very well and slept most of the night...thank god.
On Friday, around lunch time, we reached our destination...Nana and Pop Pop's house. The kids were so excited to see them! We got to unwind and take showers. On Saturday we has a family barbeque. It was great to see a lot of Stuart's family that we haven't seen in a very long time. Thank you to everyone who came and for Nana and Pop Pop for putting on a great family get together. We hope to see everyone again real soon. Sunday we jumped back into the car and headed down to Homestead to see the last Winston Cup Nascar race of the season. Kyle was in all his glory. The race was awesome! What a great experience!
Monday we headed up to Orlando to go to Disney World (this was not through Make a Wish). We stayed at Old Key West, a resort inside Disney, thanks to the generosity of Stuart's parents. It was a bit cool in Florida, not swimming weather, but nice comfortable weather. There were no lines in the parks, so the kids never had to wait to get on any rides. Zachary was not thrilled with many of the rides because they were inside and dark. He did love the Buzz Lightyear Spin ride, Dumbo, Aladdin, the cars, and the carousel. Kyle got his first taste of a rollercoaster. We dragged him on to Big Thunder Mountain. He was reluctant, but just LOVED the ride. He did go on Splash Mountain, but opted to NEVER do it again. Zachary loved all the characters. His first meeting was Buzz Lightyear. If you know Zackie, Toy Story is his FAVORITE. He loved seeing Mickey Mouse and the "other" Mickey (also known as Minnie Mouse).Kyle loved the Monorail and the Disney buses, but was amazed at just about everything he saw in Disney. We took tons of pictures. We will try to sort through them and get some on the web site.
On Friday night, the last night at Disney, Zachary had a VERY bad night. He was tossing and turning and screaming in his sleep ALL night. He had been congested for about a week at this point. During the day on Satuday he had over 101 temp and an obvious ear infection. The ride home was torture for him. Even though he slept, he still cried in his sleep. Kyle also on the trip home Saturday into Sunday, complianed of an earache. I am VERY glad we didn't chose to fly.
We got home in 17 1/2 hours including some brief stops. On Sunday Zachary's temp was up to 103.4! As you have probably noticed, my kids tend to get sick on weekends when we have no access to a doctor. On Monday we headed off to the pediatrician. Zachary had a grade 8-10 (10 is the worst) ear infection in his right ear. We held off giving him his penicillin that he takes every day, twice a day for low IGG levels, and gave him Augmentin ES to combat the infection. Kyle too had an ear infection (not a real bad one though), the second one in just over a month...Augmentin for him too.
Here we are on Wednesday. Zachary has been complaining of being VERY tired. He just wants to lay on the couch or be held. Even his teacher yesterday asked me if he was ok. She felt he just wasn't acting like himself. He has been on antibiotics for 3 days, and I think he now has an infection is the ear that was clear on Monday. Needless to say I am a bit worried. I called Stu and he felt CHOP needed to be called. I guess I just needed some reassurance. CHOP felt he didn't need to come in today and that he probably is combating a virus. Though, if he is still very tired and not himself on Friday, he will need to go to CHOP for blood work. As all of you cancer mom's know, once your child has had cancer, even with remission, you never stop worrying that the cancer will come back. I know in my head that he is a normal kid now, in school, getting normal cooties, but you always are on edge waiting for the rug to be pulled from under you. So for all my friends and family that I now have worried, have no fear...he is fine. I am just being a normal worried mom.
On the ride home from picking up Kyle from school today, I asked Kyle what he is thankful for. I thought I would share his answer with all of you. He said he was thankful for his brother Zachary...and Colby...and Sami...and Ian (from Ocean of Love). I was stunned by his answer, so I asked him why he chose the response he did. He said that he is thankful that they "don't want there leukemia anymore" He then remembered on his own and corrected his answer to Sami not having "blastoma" and Ian not having "lymphoma" any more. I reminded him that his buddy Colby still has those bad cells but will get rid of them when he gets his new Bone marrow. He looked at me with concern as we pulled into the garage and asked me to take him to CHOP before it "closed". I asked him why, and he said "I need to give Colby some of my bone marrow". I told him that a wonderful person will be giving him bone marrow so maybe he can buy him a toy to make him feel better. His respnose to me was " don't be silly mommy, a toy cant get rid of leukemia!" He is so cute!!! He was also thankful for our family, his friends, his toys and the presents he is getting for hanukkah. Zachary chimed in to say he was thankful for his Mommy, Daddy, Grandpa and cousin Jake. I think he would have named everyone else but he remembered he was also grateful for McDonalds. Kids are just amazing!
Wishing all of you a happy and healthy Thanksgiving.
May your family be Blessed just as we are.
Dana
Sunday, November 24, 2002 at 10:51 AM (CST)
We are home from Florida! We had a blast. I am way too tired now to give the full update, so check back tomorrow.
Right now Zachary has 103.4 temp. He has been congested for a week and has an ear infection. Of course, as always, since it is a weekend, we wont be able to get to a doctor until tomorrow. Kyle also has bad ear ache. Back to reality!
Update and pictures to follow!
Dana
Saturday, November 09, 2002 at 11:43 AM (CST)
Hey guess what???...NO fevers this weekend...(yet). I wasn't sure if every weekend was going to be filled with tylenol and antibiotics. The kids are doing great. They are very busy playing with all their new toys from their birthdays.
We had 2 birthday parties for the boys. On Sat Nov 2nd, my parents and sister Jill came over for dinner and cake. The boys finally decided on a Blue's Clues cake after much fighting over it. The next day 10 of their favorite friends came to McDonalds for a birthday bash. I wasn't sure if I would do a party at the house or out...this made me forever decide to have it out of the house. 12 boys running around...glad it was not in my house. They had so much fun. I even got to climb in the tubes after Zachary faked being stuck at the top (ok Lynn, stop laughing). Thank you everyone who came. We really missed you Sami...you would have shown all those boys who was boss!
Kyle is absorbing information at school like a sponge. He is learning how to write his letters and is doing great at beginning to read. Aunt Laura made words on magnets to put on the refrigerator and right away he started to form sentences...he is amazing. All he can talk about is his upcoming trip to Disney. We will also get a chance to go to a Nascar race...Life is good.
Zachary...well what can I say, he is a ball of energy. His new thing is telling knock knock jokes. I am not sure where he got it from, but this is how it goes..."Na Na Knock"...who's there?..."Cookie"...Cookie who?..."Cookie Duck"...then he laughs and so do I! He has a wonderful sense of humor and tons of spirit. He too is obsessed about his upcoming trip...he gets to meet his heros, Buzz and Woody! We hope to get through the winter with out needing IVIG. I talked to my boss at work and asked if it could be run at my hospital on pediatrics. We decided it could and we volunteered a specific nurse to do it if necessary. One of Zachary's nurses from CHOP now works with me (she is on the Pedi unit though), so we figured she can do it...Sorry Janette. Any way, we hope not to need it at all.
That's it for now. Please pray for Colby as he heads towards a second transplant for JMML...Connor too!, also for Conor and Riley who are just beginning this journey.
Dana
Sunday, November 03, 2002 at 10:09 AM (CST)
HAPPY BIRTHDAY ZACHARY! I cant believe our baby is 3 years old. We are so blessed to have you with us. You really have a wonderful fighting spirit. Now we look at you...you are healthy and happy, it is hard to remember you were ever sick. We love you very much!
Mommy, Daddy and Kyle (Dakota and Carly too!)
Sunday, October 27, 2002 at 08:02 PM (CST)
Another weekend...another round of fever. This time it was Kyle's turn. After Kyle's nap on Friday, he woke up screaming that his throat, ears and mouth hurt. He had a fever of 102. I called the pediatrician and off we went. I rushed out so fast to get to the office before it closed, that I never gave him any tylenol. Needless to say, when we got there he was lethargic and really burning up. The doc gave him motrin, a diagnosis of a double ear infection (severe in the left), and a script for suprax antibiotic. She told us to come back on Monday if he is no better or Friday just to see how that left ear is responding to the antibiotics.
Today is Sunday and Kyle is in the same shape he was in on Friday. The pain is still bad in the left ear and his fevers persist...up to 104! We will see how he is tomorrow, then go to the doc if he is no better after 3 days on this antibiotic.
This time Kyle stayed home, and Zachary went out with Stuart. We were supposed to all attend the Ocean of Love halloween party. Zachary had a blast. He wore his police man costume so he wouldn't ruin the Buzz one before halloween. We are so grateful for all Ocean of Love has done, and continues to do for our family. Thank you Stu for taking Zackie while Kyle and I got much needed rest.
Zachary is doing great...what can I say, EVERY day is a blessing. Praying for a lasting remission and a cure.
Dana
Tuesday, October 22, 2002 at 04:22 PM (CDT)
Zachary's is doing great now. The fevers were mostly gone by Monday, was mostly low grade by then. Today he has no fever, just a runny nose. I really think we shocked his immune system by stopping acyclovir (which was on for 1 year) and Bactrim (which he was on for a year and a half). He is still on penicillin VK due to his hypogammaglobunemia (low IGG levels).
Today Zachary had a well visit with his original pediatrician. He hasn't been there in a little less than 2 years! He didn't like it there much and caused quite a fuss...what's new?! All checked out well. He was 29.8 pounds and 36 inches tall. We discussed the low IGG levels. The doc said we can expect lots of colds this winter, but each child is different. If he keeps getting sick, he will have to get IVIG, but for now we wait. He will have the levels redrawn in December at CHOP. Zackie got his first 2 vaccinations. He was due for 5, but I would never allow that many at once. We did the most important ones first, Hib and prevnar, and will do more in December.
We are getting ready for Halloween. Kyle will be Jeff Gordon and a red power ranger. Why two you ask?...He wanted Jeff Gordon first, but I couldn't find it, so he settled on Power Rangers. We finally found one to borrow, so he will alternate for parties, school, and trick or treating. Zachary will be Buzz Lightyear. My friend Teresa made the costume, it is awesome!
Kyle's birthday is coming up on Oct 30th, he will be 5. Zachary's is on Nov 3rd, he will be 3.
Grandma update...She is doing great in physical therapy. She will start to walk with the cane soon.
Sunday, October 20, 2002 at 09:21 AM (CDT)
Well, Here we are on Sunday, still with fevers. Zachary first spiked a fever of 103.6 Friday evening. I gave him tylenol and it went down. At 1am it was back up to 103.0 so I gave him more tylenol and he slept. By morning, it was nothing more than low grade. I called his pediatrician, she felt he probably got the coxsackie virus or some other virus and it would just need to run it's course. She did suggest that I call CHOP if it gets high again.
Since Zachary had no fever during the day, we went to a harvest party at OCC for families affected by cancer. The kids had a blast! As the day went on, Zachary looked more beat, so we went home. By the time we got home, his temp was up to 103.6! I called the oncology fellow on call at CHOP. I gave his history and info about his low IGG levels. She called our primary Dr. Bunin. Dr. Bunin felt it was a virus and would just run it's course. They said it was the function of his t cells, which are fully functioning, not the IGG, that would be fighting it. Essentially, he should be able to handle it just like any other kid would.
At 1:45am again, Zachary woke up with 102.0. I just gave him tylenol and juice. His only symptoms are a yucky runny nose and this on and off fever. So far no coxsackie sores in his mouth, hands or feet. Today, I will take Kyle to my nephew's baptism and Zachary will stay home with Stuart. As of this morning he has no fever, but the pattern seems to be evening and night only...strange.
Tomorrow is Monday, so I can take Zachary to see a doctor if he has a bad night tonight. Wish us luck!
Dana
Friday, October 18, 2002 at 03:12 PM (CDT)
***10pm. I spoke too soon, Zachary spiked a fever of 103.6 just 15 minutes before the babysitter was due to get here. Stu and I were going to Fright fest at Great Adventure. Stuart took Kyle instead and I stayed home. Zachary took tylenol and the fever is down to 101.0. He was exposed to coxsackie virus at school. I will call his doc in the morning to see what, if anything, needs to be done. UGH! Yes Laura, once again he is trying to make me miss one of your boys baptisms! Dont worry, I will be there, he may not.
FINALLY...I added the pictures from the party to the photo page. Check them out.
Things are going well here. The boys each caught a cold. Amazingly, Kyle was worse off. He is doing fine now, but he compulsively wiped his nose, so now it is raw around his nose and mouth. I kept him home from school on Wed and Friday. Zachary recovered well.
Zachary is making going to school very difficult. He now cries that he doesn't want to go. On the way to school yesterday, he was screaming that he wanted to go to CHOP instead. I asked him why would he want to go there? He said to tell Dr "Button" (Dr. Bunin) that he doesn't want to go to school. Once he gets there he cries for me, but once I leave he is fine. When I pick him up, all he can talk about is how much he loves school...strange!
Zachary has his first WELL visit check up at the pediatrician on Tuesday. He hasn't been there since he was 1 years old. He will start his immunizations. He needs to start over because the BMT wiped the old ones out.
Dana
Wednesday, October 09, 2002 at 12:26 PM (CDT)
So close...We got the results that Zachary's spleen showed NORMAL function. We knew we could stop the bactrim and acyclovir...but were thrilled to find out we could stop the penicillin. Imagine that, no more meds. Well, keep imagining. Zachary needs to start back on his penicillin. This time it is not for the spleen, but his IGG levels are too low. His immune system is not quite ready to function on it's own. I thought he would need IVIG, but Dr Bunin feels it is not necessary.
His next appointment is December 26th. They will retest the IGG levels. We will be starting vaccinations this month. Luckily his Lymph subset report showed that his white cells are ready for that.
Grandma update...Still in the rehab. She is doing great with physical therapy, but still has a lot of pain. Her blood sugars have been high, so they are giving her insulin. She will come home on Friday. The boys got to see her yesterday. They were careful not to touch her boo boo.
Pray extra hard for Colby and Connor who are battling relapsed JMML and for all our JMML warriors. I will add a link to the childhood cancer awareness tree. I already added Zachary's name.
New pictures soon...I promise!
Dana
Friday, October 04, 2002 at 11:40 AM (CDT)
Day +365
Happy 1 year post BMT Anniversary!
Thursday, October 03, 2002 at 05:40 PM (CDT)
Day +364
Much easier day today...longer, but easier. (If you don't know what I am talking about, read yesterday's post under journal history). Zackie was much more pleasant. With the help of daddy, we made it through (love ya honey!).
We started in oncology clinic. We were greeted by friendly faces...Sami, Sandy and Dan Gray. Sami even came into the examination room with Zachary, a true friend! Our plan to have the nurse put in the IV and draw the blood from it didn't work. They had to take way too much blood to do it through the heplock...two ouchies for Zackie. Zachary didn't cry once during the blood draw due to the fact that Kuki, the lab tech, bribed him with stickers. She knows the drill, he wont give her his arm until he gets all the stickers he wants with the proper cartoon characters on them. Oh, by the way, he is NOT 14.0 kg, as the sleep clinic said, he is ACTUALLY 13.6kg (30 pounds), only a gain of 3/4 of a pound. Also, he did NOT shrink, he is not 89.2, but still 91cm, as he was 6 weeks ago, WHEW!
The visit with Dr. Bunin went well. No concerns, big change from last years visits. Guess what?...Zackie gets 3 months off from CHOP! Next visit is December 26th. Care for numbers?...WBC 6.5, Hgb 12.8, Plt 337, NORMAL differential, ANC 3081. We then went to EKG...NORMAL, he only had to do it twice, the first time he moved too much. Off to ECHO next. He was so well behaved...and patient. We had an intern do the scan, I think it was his first one, or so it seemed. Any way, same results as always, a small PDA, otherwise normal.
Our next stop was to sedation.Zachary was a brave soldier getting his IV...not one tear! The nurses were well aware that Zachary normally requires MAXIMUM sedation to get him to sleep. This time they had a better plan. Instead of the normal Versed and Pentobarbital(max dose), they used Versed, pentobarbital (50% of max dose) and fentanyl. It really didn't matter much. Zachary was so tired, they could have given him tylenol and he would have slept. He was zonked from the versed alone, fought the pentobarb as always, but went out with the fentanyl. The scan took 45 minutes. Funny how 18 months ago, I would NEVER leave his side during a scan, this time once he got started, Stuart and I had lunch right outside the room. ( No, Anne, I didn't abandon him...hehe). Sorry we didn't take him to 3 East, he was way to zonked and I knew Anne's shift was over...I think. It took Zachary a while to wake up, but he was very tired. It was better this time. With maximum pentobarbital, Zachary was unable to walk for hours, this time he is just weak.
Now we are home. I will get the scan results tomorrow. If his spleen is functioning, he will be off ALL meds! We stopped acyclovir and bactrim as of today! YIPPIE!
Mom update...She went through the night with no pain meds! She gets up now with help and does her physical therapy with the help of morphine. She will be transferred to rehab tomorrow. We are all pulling for you mom!
We are blessed!
Dana
Wednesday, October 02, 2002 at 05:48 PM (CDT)
Oh boy...Zackie sure wore me out today. I am not sure if he doesn't feel well or what, but he was quite the crabby, defiant child. Ok...I know he normally is, but today he was OUT of HAND!
For starters, he pooped in his pants earlier in the day. I know he is new to potty training, but the poop came on too quick, so I wonder if he has a stomach ache. We had an appointment at CHOP today with the sleep study team. Zachary was so wild there, I couldn't control him...quite embarassing. We first talked with the psychology intern, not the most personable girl. She then discussed his sleep problems with the regular psychologist and the neurologist. They all came in to talk to us. During this time, Zachary ran around the room like a monkey and proceeded to take EVERYTHING out of my pocketbook. The plan is to make changes to his sleep time. Kind of a trial and error thing. His sleep study...get this...is not until January 29th! So here we want to get to the root of the problem, but we have to wait 4 months. So I took a tour of the sleep clinic, smiled, and said MERRY CHRISTMAS and HAPPY NEW YEAR!
Tomorrow's agenda...take 2 tylenol...then start my day. Luckily, Stuart will be with us all day:
9am(ish)Oncology clinic, they will put in his IV
in and draw his blood
10am Meet with Dr Bunin, oncologist
11am EKG and Echocardiogram
12pm off to the sedation room, night night!
1pm nuclear spleen scan
Zachary weighed in at 14.0kg...30.8 pounds, that is up 1 and 1/2 pounds in 6 weeks...hmmm, normal? not sure, I will ask.
He measured in at 89.2 cm...sorry don't know the conversion, but I think he shrunk! (Sandy, you know how that goes...different person measuring...different number).
I will update tomorrow.
My mom did well with her knee replacement. She does have alot of pain, but she is tough like Zackie, she already started physical therapy.
Dana
Sunday, September 29, 2002 at 09:15 PM (CDT)
Wow...What a weekend! Zachary had his big one year of remission bash. The one year is actually on October 4th. I can hardly believe it has come and go. It seemed like just yesterday that we had said if Zachary makes it to one year, we would have a BIG celebration. Well here we are...Blessed.
Zachary never stopped running during the whole party. The kids were funny to watch. We had a magician come to entertain the kids...he entertained us all! People who haven't seen Zachary since before diagnosis, really never expected to see such a healthy child. Yes, he is doing great, but he looked so well most of the time. JMML is such a silent disease. Unless you look at the blood under the microscope, you would never truly see the battle going on inside his body. Right now...that bad blood is gone and Kyle's healing blood is running through Zachary's tiny veins...AMAZING huh?
We want to thank everyone that attended Zachary's party and for those of you that attended in spirit. Your love for us is felt...in fact it carried us during this past year. Thank you to Laisa for making the chocolate gold ribbons...they came out awesome, to Laura for providing the sign in book ( and to all of you for the profound touching words you wrote in there), and to my dear father in law Richard for taking each and EVERY journal entry I have written and organizing them in to a great journal...you have touched my heart!
For all of you that have prayed for him...we thank you, but ask you not stop. Today we celebrate, but on Thursday we go back to reality...back to CHOP for a check up, never really sure if the rug will be pulled from under our feet. I will always worry...but NEVER stop celebrating his life (yes Lisa...even when he does decorate my wall in lipstick...which by the way he did again this weekend).
I will update again this week after clinic.
Happy Birthday Scott...I got so caught up in Zackie's party that I forgot about you. Happy Birthday to Emily (she was born around the time Zachary's new marrow was hung). Happy Annivesary to Lisa and Bob...my life line, I would have sunk without your love and support. Good luck on your surgery Mom...how will I function without your soup for so long!
Last thank you for those of you that donated to Ocean of Love in Zachary's honor...it is the BEST gift you could have given us.
Dana
Monday, September 23, 2002 at 05:34 PM (CDT)
Saturday night was the Light the Night walk for the Leukemia Lymphoma Society. We had a great time! The night started with refreshments and lots of running and playing. The boys had a great time playing ball with some fraternity boys. We got our team together and took a group photo. I do have a copy on my camera but funny enough, me, Stu and Zachary aren't in the picture. I have to wait to get the copy from the photographer. We all got our illuminated balloons...white for Zachary and red for all the supporters. That alone was a real challenge. The balloons
kept popping...hmmm...5 kids under 5 years old...that was bound to happen.
Before the walk, they announced Kaitlyn (a 9 year old leukemia survivor) and Zachary as the Co-ambassadors and presented them with a gift each. It was a very proud and touching moment for us. From there, the teams for the co-ambassadors started the walk. Actually, Zachary lagged behind but finally caught up. Zachary walked about 2 minutes, then hitched a ride in Bob's stroller and munched on some chips. The other boys had fun carrying the banner and being silly. We started as the second team...and ended second to last. We just had a great time.
A very special thank you to my father Seymour, sister Laura and brother-in-law Scott, their kids Ryan and Jacob, Laisa and Jim, their new son Jacob, Jodie, Peg, Bob, and his boys Ryan and John, for walking with my family on the "Zackie's Friends" team and helping to raise funds. I also must thank my mother Arlene and my sister Jill, for taking the time to volunteer at the walk and for providing refreshments and to Ilana for air brushing the banner. Most of all, thank you to the Manchester PBA for their generous sponsor and to each and every person...and there are alot of you, for the donations. The grand total...as proof of your love for Zachary and my family and your determination to better the lives of families affected by blood cancer and the quest for a cure...we raised $4,480! Words can't describe how loved we feel and how proud we are that people would open their wallets to make a difference in someone elses life. We are truly blessed.
Zachary is doing wonderful. Each day is a blessing. Keep praying for his continued health...the world would stop turning with out him. One of the doctors I work with asked me if Zachary's illness has changed how I think and live...my answer was, PROFOUNDLY. I will NEVER forget all that Zachary had to endure to get to this point. Every child and family I have met with childhood cancer has changed me and given me the drive to forever devote my life to supporting their causes in any way I can. My advise to all of you, donate money for research when you can, if you know a family in need.. help them, send a card to make someone smile, donate blood, become a bone marrow donor...just make a difference, life is too short not to.
Pictures will be added this week. Sign in guestbook...we love to hear form you.
Please pray hard for Colby (relapsed JMML)...his family is dear to me. www.caringbridge.org/pa/colby
Dana
Thursday, September 19, 2002 at 09:34 AM (CDT)
Just thought I would update...not too much to say, but that is a good thing. We are getting ready for our two big September event: the Light the Night walk and Zachary's big one year celebration. Life is moving on so quickly, it makes my head spin. One year ago I never imagined getting to this point.
At this point last year, we were packing our bags for Zachary's long hospital admission for his BMT. We were praying hard that Zachary's leukemia stayed stable and that Kyle would not get a cold or anything that would affect him donating the marrow. We were preparing Kyle as best we could for the harvest. I spent the majority of the time with a knot in my stomach and my heart in my throat. We new very well when we walked into CHOP, that we may not bring Zachary home. Here we are, one year later, watching Zachary run and play...thanking god for the gift of life and praying he allow us to keep him forever.
The Light the Night walk to benefit the Leukemia Lymphoma Society is on Saturday. The preliminary total of donations in Zachary's honor...drum roll please...$4,121!!! The final total will be posted after the walk. I won't start with the thank you's too much here but...From the bottom of my heart, I thank my father Seymour, the Davis crew, the Dolan crew, Jim, and Peg for walking with my family and to my mom, Arlene and sister Jill for volunteering at the event. Guess what?...no rain in the forcast.
Laura and Jack...people around the world are praying for Colby. We need to pray hard and LOUD! Yesterday is over...now you put on your boxing gloves and head in for the fight. We are in your corner to encourage and empower you. Never lose hope. www.caringbridge.org/pa/colby
Dana
Thursday, September 05, 2002 at 06:16 PM (CDT)
God Bless the families affected by 9/11.
***Check out Zachary's smile quilt...click on the link at the bottom of the page.
Zachary is officially a school boy! He started nursery school this past Tuesday and now has two days under his belt. He was a bit hesitant to go into the classroom, but wound up having a great day. I was so thrilled to see him come out in the same shorts...no pee pee accidents. He is the youngest in his class and by far the smallest. He can hold his own, he has proven that.
Kyle also started pre-kindergarten classes. He has a lot of the same kids from last year and also the same teacher. He, of course, wore a Nascar outfit and carried a HUGE Nascar duffel bag as his school bag. It is bigger than him!
All in all, things have been going well. Yesterday Zachary had a very bad day. His behavior was aweful! He was very agitated and seemed to have "ants in his pants". He also had patches of excema. I don't know if he was having an allergic reaction to something...if it is the GVHD...who knows. Today was a bit better. He was less agitated but has a bit more excema. If it gets worse, I will call the docs at CHOP. He very nicely decorated one off my walls in the foyer with lipstick. Well it was my fault for hiding on the porch talking on the phone. He was so proud of himself! That's my Zackie!
We have been collecting sponsor donations for the Light the Night Walk to benfit the Leukemia Lymphoma society. We will be walking as a team to honor Zachary. His team name is "Zackie's Friends". I am humbled by the amount of sponsors we have gotten including a VERY sizeable contribution from the local PBA. Zachary will be a co-ambassador for the walk. I pray this money will help to find a cure and support other families like ours. For more information on sponsoring Zachary or walking on our team on Sept 21st (Sat) at 5pm at Brookdale Community College, email me at the below address and I will get back to you.
Dana
Friday, August 23, 2002 at 08:04 AM (CDT)
***I forgot to mention...I passed the RNC exam...YEAH! If you are having problems with the guestbook, make sure you use www.caringbridge.org/nj/zacharyd. It seems they are fully changing from .com to .org. Check out the new pictures.
Sorry so long between updates. It seems the further out of treatment we get, the less there is to report. Since I waited almost a month to update, I now have lots to write. Where to begin...At the beginning of August, Stuart took the boys to Virginia to visit with his sister's family and his parents. I was not able to go because I had to work. This was my first time away fom Zackie. The boys had a great time. Thank you Nana and Pop Pop for all the great toys. The following weekend we went up to north Jersey to visit with the Gunning Family. We survived taking 4 kids, all under the age of 5, to Applebees. We had a blast. The kids spent most of the time playing with balloons. Kyle thought it was SO funny when the balloon popped...until he realized it was his, then he cried. We then proceeded to the Gray house (Sami's). The kids were having fun playing, while the adults dined on a feast that Dan prepared. When the sun went down a bit, Kyle, Zachary, and Sami took a dip in the pool (hot tub turned into a little pool). Zachary was not too interested and spent much of the time running around naked in the backyard (it was shaded but not as private as I would have liked). Zachary tried to teach Sami how to use the potty...we only managed to confuse her being Zachary stands up to urinate (Sorry Sandy if we set back potty training!). I don't know if Dan still has the pictures on his site www.caringbridge.com/nj/samigray .
On August 9th, Kyle had a 4 1/2 year well visit. We thought he had missed a vaccine. We were excited to see he has grown from 39 1/2 inches to 40 3/4 and had gained 4 pounds just in a 10 month period. Over all Kyle is developing well. We still do have issues with bed wetting (or pull up wetting) at night. The doctor feels he will out grow it...I guess we just be patient. He does also need some speech therapy, which we are involved in trying to set up. He just finished up camp for the summer. He is now a star swimmer. He will start pre-kindergarten in the fall.
On Wednesday we had a visit from the Cole family. I know alot of you know of him, but if you dont here is a little history. Colby is a 4 year old boy with JMML just like Zachary. He went through similar treatment in Pittsburg, but unfortunately at day +101 relapsed. He went to CHOP to have a potentially life saving treatment, DLI (Donor leukocyte infusion). After their visit at CHOP, they headed over to our house with the Gray family. We had a great time. My friends Laisa and Jim were here too for a little while with there new baby Jacob. Quite the unplanned party...best kind to have. Dr. Bunin suggested, after Colby's DLI, that Laura and Jack have a glass of wine. Well with the help of Dan and Sandy, and my own stash, we polished off 2 bottles! The kids (Colby, 4, Kyle,4, Zachary,2, Cameron,2, and Sami,2) were having fun playing. They were all instant friends. We ate and talked...best support group session I have ever attended!
The Cole family spent the night. The next day, Zachary had clinic, so Laura and Jack stayed with Kyle...gee they come to visit and I put them to work! The took the boys outside to play and for a walk. When Zachary and I got home, we had lunch and off to the beach we went. I took them to Point Pleasant so we would have the board walk too. The day was beautiful...but too windy. Sand was flying around which was making it uncomfortable. We went on the boardwalk and had a blast watching the kids play skee ball. Colby was really good at it and won most of our points. Each boy got a toy airplane and back to the beach we went. When we were done we walked the boardwalk. The Cole boys went into the fun house...Jack are you recovering???hehe. Kyle was too scared and Zachary is too much of a flight risk, so we waited outside. All good things must come to an end...we waved Laura, Jack, Colby and Cameron goodbye around 6:45pm. They had a 6 hour drive home. We pray the DLI works with minimal adverse affects. www.caringbridge.com/pa/colby
Zachary made it 6 weeks between visits to CHOP!!! Things went well. I talked to him about behaving. I hardly have a chance to ask any questions because he always runs out of the room like a mad man. He did listen to me this time, mostly. Either way, I did have a chance to talk to Dr. Bunin. Zachary's counts are awesome. WBC 9.4, Hgb 12.8, platelets 263, and ANC 5029. As for the rash, it seems he has mild GVHD of the skin. Not a big deal. We hope having a small amount is good as it has the ability to fight leukemia cells if any are hiding. We dont plan to treat it as it seems not to bother him much. Zachary still has issues sleeping at night. Even though it may be just behavioral, the doctor suggested he have a sleep study just to see waht is going on. I will call to have that set up. It will be done at the Seashore House attached to CHOP. His next visit is in 6 weeks, one day shy of his one year BMT anniversary. That day, he will have his regular blood work, IGG subsets to check his immuneglobulin levels, an EKG and echo of his heart, and a spleen scan to see if the 40% of remaining spleen is functioning.
Zachary is STILL the same weight...13.3kg or 29 1/2 pounds. He did grow though...hold onto your hats...one inch in 6 weeks. He went from 34 3/4 to 35 3/4! He is doing awesome on the potty with the exception of a few poop accidents, we are working on that.
I will update the pictures this weekend.
~Dana
Wednesday, July 31, 2002 at 06:37 PM (CDT)
***Day +300***
I can hardly believe it...time is passing so quick. It has been 300 days since our baby Zachary had a bone marrow transplant to rid him of an aweful disease...JMML. 300 days ago, my sweet son, Kyle, donated his marrow...the gift of life to his baby brother. At 12:20pm, we sat and watched this miracle...a bag that looked like blood infuse into Zachary's weak body, and prayed for a miracle...a cure. I have no assurance that Zachary is cured, things can change at anytime, but for now I celebrate his life and the gift Kyle has given to him and to us.
Zachary amazes us every day. We marvel at watching him transition from a baby into a little boy. He has decided to stop wearing pullups and diapers and to only wear underwear. His language development is improving by leaps and bounds. His little body is growing so fast...I wonder how long it will be before he towers over Kyle. We love him so much and pray we get to watch him grow in to a man.
Kyle too is changing so fast. His desire to learn about the world is amazing. He is so smart and it takes all we have to feed his mind and spirit. His love for Nascar is always growing. He is Dale Earnhart Jr.'s BIGGEST fan. Of course Fed Ex is still an obsession for him. Thank you to Bruce and Jill B. for the gifts you sent him (Fed Ex goodies). He promised to drink lots of milk to grow big enough to wear the T shirt Jill sent him (she is Colby's make a wish friend). Siblings tend to get a bit lost in the shuffle as the focus is on the cancer patient...Thank you for putting the spot light on him, we will never forget it.
We had a wonderful week and weekend. The Ocean of Love family reunion picnic was a blast. Zachary danced his little heart out. I am forever humbled by the wonderful famlies I have met and the unconditional support I have received. Friday morning I took my certification exam in my field of nursing...5 more weeks until I get results, but that was the WORST exam I ever took. It was an optional exam so failing will have no effect on my career...thank god! Friday evening Laura and Jack Cole came to stay with us after their consult at CHOP. Their 4 year old son Colby has relapsed with JMML. Pray hard for them (www.caringbridge.com/pa/colby). I thoroughly enjoyed their company and it took every ounce of strength not to cry for them. I hate this disease...I hate cancer! The boys loved them. Zachary even hopped in their car...sat in Colby's car seat and waved good bye to us. Laura has a magical personality...they bonded instantly.
Aunt Laura, Uncle Scott and Cousins Ryan and Jacob came over Saturday until Sunday. We had a great time together as always. Sorry we couldn't do more outside stuff...It was too hot. This summer has been torture. If you were wondering, Zachary's rash has been stable. Next time it breaks out, we will take him to our regular pediatrician and make an appointment with a dermatologist. Zachary continues to have rough nights. He is too young to explain what is happening to him. Transplant is very rough on the body and he will be forever affected by it. If at anytime I get concerned about him and his well being...CHOP will see him that day. For now we let him heal one day at a time and pray for THOUSANDS of more days with him.
Check out the new pictures if you haven't already. Feel free to sign the guestbook, we love to hear from you.
Dana
Friday, July 19, 2002 at 09:40 PM (CDT)
***Check out new pictures from the Ocean of Love family reunion, Cousin Ryan's visit, a super daddy and Zackie picture...and last but not least...pictures from Laura and Jack Cole's (Colby's parents)visit.***
Day +288...Can you believe it!
Not too much to report here. I thought I might as well add a journal entry since I was adding new photos to the photo page (check them out, they are in the middle). We took the boys to a minor league baseball game on Sunday (Stu's birthday). We got the tickets from Ocean of Love, an organization that helps families in Ocean County who have children with cancer. The seats were in the FIRST row right behind home plate. Kyle has been there before, but it was Zackie's first time. The stadium is just 20 minutes away.
For the first 20 minutes of the game, Zachary whined. He couldn't understand why he wasn't able to run onto the field and play too. We bribed him with lots of yummy baseball food...hot dog...soda...soft pretzel. Kyle and Zackie danced in the stands and cheered their team on. I love having these outings. This summer is FAR better than the last one.
I would love to say Zachary's rash was gone for good...I doubt it. We bombarded it with the cream, and it did go away...but...I think in the morning it will be back. Everytime he gets an outbreak his behavior is at it's very worst. I just don't know what to make of this. I know it is not his JMML rash...his counts are too good and he has NO signs of relapse. I also don't believe his JMML rash was itchy and it looked more like excema. He hasn't been outside at all, so if it comes back it cant be from the sun I would think. We will see in the morning, maybe this is a false alarm. Let's hope for no itchies as Zackie calls it.
Tomorrow we will go to Great Adventure and On Sunday we have Stuart's company picnic in NY. Next appointment at CHOP is August 22nd.
Congrats to Laisa and Jim on the birth of their first son Jacob Anthony.
Dana
Monday, July 08, 2002 at 03:00 PM (CDT)
UPDATE 7/11/02...Zachary had his monthly visit at CHOP today. Things continue to look great. I don't have the lab results in front of me, but I think they were WBC=5.4, PLT=280k, HGB=13.5 and the ANC was about 2600. Very stable and NORMAL counts. Here we are 9 months and 1 week post transplant...what a blessing. As for the rash...no big deal, the doc thinks it is probably just a heat rash of sorts and NOT due to the bactrim. She gave us a script for more cream if he needs it. Zachary grew 1/4 of an inch, he is now 34 3/4 inches tall. He lost 1/2 pound, but the way I look at it, a normal 2 year old doesn't get weighed as often as Zack and I am sure their weight fluctuates too. If he were to lose over a pound, I would be concerned...but for now I would say he is just A OK! The best news is Zachary gets a 6 week break from CHOP. He would only go sooner if he gets sick, but otherwise we are pulling out of the oncology scene slowly ( just wish I could take a few more of our fellow JMML kiddies with me). Check out our new pictures if you haven't already and PLEASE continue to pray for Colby and the other JMML kids.
I hope everyone had a happy and safe 4th of July. We had a great holiday weekend. We took our first post treatment vacation to Ocean City Maryland. What an exciting milestone for Zachary..for all of us. We drove to Cape May, NJ and took the ferry into Lewes Delaware. From there we drove into OC. We got there a bit early on the 4th, so we went in and out of stores to pass the time. The heat was outragous. The rest of the weekend was much better heat wise. The hotel we stayed in was nice. We had a great view of the beach and boardwalk.
We spent the day at the beach. Zachary stayed under the umbrella with his shirt and hat on. He was very compliant. He didn't like the ocean much...Kyle wouldn't go near it. They loved playing in the sand. We went to see the fireworks on the beach at night. Kyle has a history of being terrified of them, Zachary doesn't usually mind them. We got there a bit early, so the boys played on the beach with a 9 and 13 year old. (thankfully these older boys were tolerant of Kyle following them around). When it came time for the fireworks, Kyle insisted that he sit with his "friends". We figured when the first firework went up, he would coming running for cover. Well, he didn't, he sat and watched the whole show...cheering the whole while. And who do you think had his head buried?...Zachary! Boy these kids are unpredictable!
The kids loved swimming. Kyle was VERY hesitant at first. That suprised me because he goes to camp and takes swim lessons. He used to love the water, but last summer was too hectic with Zachary's treatment to take him swimming. He was hanging on us, but enjoyed the water just as long as he was held. As I said... they are unpredicable, Kyle got up the courage and decided to venture on his own (with a life jacket). He did wonderful...now he is addicted. I'm sure his swim instuctor was pleasantly suprised today. Zachary hung out in his tube and roamed the pool.
We also took the boys on a discovery cruise. The got to go on the bay while in a shaded boat. We saw wild ponies off on the island (they were kind of far though). They pulled off so we could catch crabs in nets. Stuart was the only brave one. Zachary tried, but hated the water and Kyle didn't want to get in the water. I would just rather watch Stuart. The kids got a brief lesson in marine biology and OC history. Pretty much they watched the other boats and ate M&Ms.
We spent a great deal of time walking the boardwalk and eating junk food. Life is good.
Now of course the whole trip can't be too uneventful. Zachary's rash got out of control after only 2 hours outdoors. We constantly loaded him up on sunscreen and used his cream. The poor kid looked aweful. The heat was hard on him. We did our best to keep him shaded and cool. We did alot in the evening and night time. I called CHOP today. The NP feels it is a reaction from Bactrim. You need to avoid sun exposure while on this antibiotic. He was pretty flared up today. We will continue the cream and talk to the doctor on Thursday at clinic. For those of you wondering about his poop...no problems! One day at a time.
Please keep Colby Cole in your prayers...his day +100 VNTR showed 67% donor cells, relapse. he too has JMML. Visit his site and say hello www.caringbridge.com/pa/colby .
Check out the new pictures. I loaded new ones in the middle and the OC ones will be done tonight.
Dana
Tuesday, June 25, 2002 at 01:33 PM (CDT)
So much for 5 weeks with out a CHOP visit. Zachary developed a rash last Thursday that would not go away with hydrocortisone cream or benadryl. Monday I called, and they said to bring him to the clinic to check it out. The doctor perscribed a stonger cream. She did not feel it was GVHD...neither did I. I think he got a contact rash from something outdoors. Either way, the rash has disappeared after only 2 doses.
As far as the poop thing, all of Zachary's stool cultures came back negative. Is this GVHD?...well if it is, it is very mild, certainly not worth doing biopsies or treating. It seems to only be bad when he is out in the sun. HMMM... easy treatment, decrease sun exposure. For all we know it can be NORMAL toddler diarrhea. He has gained back in 3 weeks the weight he had lost (since we limited how often he goes outside).
Zachary is doing awesome on the potty. He pretty much walks around naked and uses the potty everytime he gets an urge...no accidents. He does save pooping for nap time when he has a pull up on. One step at a time.
Kyle is dong great at writing his name. He will be attending camp this summer and taking swimming lessons. He is AWESOME at the computer.
HAPPY ANNIVERSARY STUART...7 YEARS AND COUNTING!!!
Dana
Sunday, June 16, 2002 at 03:22 PM (CDT)
Please pray for the Hasey family, they lost their son Jessy recently to JMML. I hope you can feel our hug all the way in Australia.
***Update 6/20/02...The Gray family paid a visit today (Sami is Zachary's friend from CHOP). The kids had a great time. Check out the new pictures. Thank you Sany and Dan for taking the LONG trip and for the yummy treats. Hope to see you again soon.
Sami's page
***Update 6/18/02...Guess who pooped and peed on the potty...Zachary! What a big boy. Check out some new pictures I added today.
Wow, I didn't realize how much time passed with out an update! Things are status quo over here. Zachary is enjoying life as a normal active toddler...just as we enjoy watching him. This time last year, Zachary was in the hospital having his first round of intense chemotherapy. What a different summer this will be. He spent all the way until August either in the hospital or having too low of counts to go any where. We truely are blessed.
Zachary and Kyle enjoy playing outside, especially driving their power wheels. Today we went to Grandpa's to celebrate father's day. We took the crew (Kyle, Zachary, cousins Ryan and baby Jacob) to the park. They had a blast feeding the deer and ducks. The boys were monkeys on the jungle gym. Zachary has no fear and can climb anything. Of course they had a fit when we had to leave. We took lots of pictures...so I will add them to the website this week.
Zachary continues to heal from his BMT. We need to always remember that even though he appears to be in perfect health, his body has a different opinion. He needs to avoid direct sun exposure and always wear sunscreen. We are still battling frequent stools, but it seems to be less and less. Tomorrow I will sent in a stool sample to check for infection. We don't expect anything. There is a chance that it is normal toddler diarrhea where carbohydrates like juice pass to fast through the GI tract. There is also the very very slim chance he has GVHD, but it is unlikely since GI GVHD usually couples with some skin involvement. He seems to be gaining back the small amount of weight he lost.
Next visit to CHOP is July 11th.
Hey did I mention Zachary is registered for preschool in the Fall. Kyle will be in big boy prekindergarten. Boy, they grow so fast!
Happy Father's Day to all the dads out there, especially my dad Seymour, Stuart's dad Richard, my wonderful brother in laws Scott and Matt...but most of all, the love of my life Stuart.
Dana
On Sept 21st we will be walking as a team in the light the night walk for the leukemia lymphoma society. The walk is at Brookdale Community College in NJ. If you are interested in joining our team to raise funds for other families in need and to honor Zachary...send me an email( the addy is on the bottom). Otherwise check in during the summer...we will be taking donations of any amount. Our team goal is to raise $3,000.
Thursday, June 06, 2002 at 08:14 PM (CDT)
Zachary had his monthly visit to CHOP today. He had a blast driving around the unit in the little car. Things look great. His counts were awesome. For those of you that like the particulars: WBC 6.5, hgb 13.1, platelets 324 and his ANC was well above 3000. They also draw a metabolic panel, but I never get those results...they call if there is a problem.
Zachary has lost a little bit of weight...he was 29 1/4 pounds last month (13.3k) and is 28 1/2 (13.0k) today. He has been having frequent stools, but not diarrhrea, they are just often, soft and dark green (Lam and Sarah...only you guys can appretiate a poop description). It seems to be worse in the warm weather. The doctor left it as if they increase or get worse, they will look into it further. As for now, there is no concern.
Zachary gets to go 5 weeks with out a doctors visit. He is due back on July 11th.
Thank you for checking in on us!
Dana
Saturday, June 01, 2002 at 10:13 AM (CDT)
So do you think it would be possible for Zachary to sit in one spot for 30 minutes or so?... Definately not! I am absolutely exhausted from the Relay for Life, and I wasn't even walking in it. We got there just in time for the opening ceremony. We did that on purpose to keep the boys attention longer. I sat with Zachary in the chairs on the field with all the cancer survivors. Stuart and Kyle were in the bleachers. The boys each whined to be with the other parent...we just can't win.
Needless to say, I spent the majority of the time chasing Zachary around. I gave him a chocolate covered cookie in the hopes that it would make him sit...well that was a disaster. He got chocolate all over his white T-shirt they gave him. He then wanted his hands cleaned. Once they were cleaned, he refused to touch the cookie again, so he had it hanging out of his mouth. What a sight! He is such a ham...even though I was so frustrated, I was so proud to see him VERY full of energy.
They announced the three 2 year olds last. Once they announced Zachary's name, he pranced up their like a celeberty. He received a medal around his neck and a high five, along with the cheers from all those watching. Stuart got it on video but was too far to take pictures. The toddlers then walked to the ribbon and were handed scissors (you can only imagine the thoughts of destruction running through their heads!). They cut the ceremonial ribbon and were off with all the rest of the cancer survivors to do the first lap on the track. As soon as I have pictures developed, I will post them.
Zachary's cardiology visit went well. They did an echocardiogram and found the PDA to be very tiny. All he needs to do is to take antibiotics when he goes to the dentist. He will not need any surgery to close it. His next visit is in one year.
Zachary's next visit to CHOP is on June 6th.
We are off to Applebee's for lunch and will go play at the park for a while.
Dana
Tuesday, May 28, 2002 at 04:41 PM (CDT)
We had a great weekend. On Friday we went to visit Dan, Sandy and Sami. Dan cooked up a feast! The kids had a great time playing. Sorry that Kyle and Zachary showed Sami the art of eating plato...at least she was smart enough not to do it! (there are pictures that Dan put together on the picture page). We then went to visit Theresa, Spencer and Preston. They live in the same town. We haven't seen them in quite a long time. It was like a reunion.
On Saturday, we went to Laisa's baby shower. Zachary spent the majority of the time feasting, while Kyle played waiter and served chips to everyone. Sunday was Grandpa's 65th birthday party. It was so nice to have the family together in one place. I love to watch everyone marvel at how good Zachary looks. Thank you Cousins Bruce and Shelley for the great arts and crafts stuff and to the Goldstein crew for the cars and koosh balls.
Sunday night I had to work, so Monday was pretty uneventful. Stuart took the boys over to Castle park and then treated the boys to their favorite McDonalds.
Tomorrow I plan to take the boys over to Grandpa's. We will go out to lunch and then play at the park. The park by where he lives has deer and other animals to feed. The kids love it there.
Friday Zachary will see the cardiologist in the morning. I don't plan alot to come of that visit. In the evening we will go to the American Cancer Society's Relay for Life. Zachary get to attend a dinner and will have a candle lit in his honor. There are also tons of activities that are open to the public.
June 6th is our next visit to CHOP.
I wanted to thank Uncle Mike and Aunt Jani for opening up, to Niki's mother, their experince with cancer. Even though every case is different...it helps to hear how others coped and what to expect. I know I could not have made it with out Niki's insight and experience with Brian's JMML, and Holli's great tips for keeping a child germ free in BMT.
Keep Luke (www.caringbridge.com/ca/lukedo) high on your prayer list. Although he has engraphed...he is still battling GVHD. Also keep Cindy, Colby, Esperanza, and Kayli in your prayers as they recover from their BMT for JMML. Lastly...pray for the Miller family...baby Reid passed away in BMT due to complications.
Dana
Tuesday, May 21, 2002 at 04:14 PM (CDT)
***check out some new pictures***
Hi Everyone! Things are great over here. Zachary is growing like a weed...Kyle too! The boys have been busy playing outside on the swings, going to the park, and riding their power wheels. Zachary has a bit of a hard time tolerating when it is hot outside. He gets very flushed and tired. He also gets diarrhea. We just need to learn Zackie's limits and invest in LOTS of sunscreen. Though Zachary looks awesome we need to remember his body is recovering and healing...so one day at a time.
We have a busy weekend planned for the holiday. On Friday we will go visit Sami. She is a 2 year old girl who has (in remission)neuroblastoma. She and Zackie were on 3East together alot. They are both real troopers so we know they will make very good friends. On Saturday we have a baby shower to go to. Zachary will come with me and Kyle will spend the day with Daddy. On Sunday is Grandpa's 65th birthday party. It is so great that Zachary is off of restrictions and can socialize.
Zachary's medical schedule: May 31st he has an appointment with the cardiologist for an echo and EKG. He has a PDA which is an open vessel in the heart that should have closed shortly after birth. He gets followed every 6 months. We pray he will not need surgery to correct it. June 6th is his next oncology visit at CHOP.
Zachary's one year anniversary of his diagnosis is on May 23rd. It is hard to believe a whole year has passed. It was at this time we were not sure if Zachary would live to see his 2nd birthday. We always kept faith. You would think a simple anniversary would not have such a profound effect on me, but it does. Even so...I am so grateful to have my baby with us. I know in my heart he will be fine..but my head does not always follow. So as I said before, one day at a time.
Dana
Thursday, May 09, 2002 at 01:13 PM (CDT)
***Listen to B98.5 in NJ, they are doing a fundraiser for Ocean of Love (local support for families with children with cancer). They will broadcast from a billboard on Rt 88 in Brick, starting at 5pm tonight, and wont come down until they raise $100,000. Stuart will be talking tomorrow at 7am. Please show your support.***
Zachary had his monthly visit to CHOP today. He was so well behaved. Once we got there, he went right to the arts and crafts...he just loves glue. He made me a beautiful project. He had his weight (29 1/2 pounds), height (34 3/4 inches), temperature and blood pressure done (normal).
Next, Zachary was seen by the nurse practitioner and a different oncologist. They gave him a very thorough exam and Zachary sat right through it and didn't complain. I told them that Zachary had 5 big falls in just a 4 day period, so along with his history of headaches and waking at night, they did a complete neuro exam. Everything was normal including his eyes so he was diagnosed as a clutzy toddler. It is hard to seperate out what is normal and what is a symptom of relapse.
Zachary then ran around the clinic FOREVER while we waited to get his blood drawn. It is fun to watch him bring smiles to everyone's faces, especially those who know the battle he has been through. He was a real trooper for the venipuncture. Of course getting blue's clues stickers can heal any wounds.
We went to 3 East while we waited for the blood results. Zachary got to see his favorite nurses, Anne and Carrie ( you guys owe me 2 dollars...just kidding). We also peaked in on baby Reid who is in BMT. It is great to be able to visit the floor and get to go home.
Results anybody?...NORMAL. His counts were awesome. June 6th will be Zachary's next oncology visit.
Dana
Check out the new pictures. I will add even more in a couple of days. Don't forget to sign the guestbook.
Wednesday, May 01, 2002 at 04:11 PM (CDT)
I am happy to report...there is not much to report. That is always good news in the world of cancer. Zachary continues to flourish. He is growing like a weed. He eats well...actually that is an understatement! When people look at him, they would never know the battle he has been through...Stuart and I will never forget.
Zachary and Kyle got to sit in a BIG 18 wheeler. Uncle Barry was in the area from Florida and was nice enough to give the kids a tour of his truck. Aunt Julie, Uncle Matt and cousin Amanda came for a visit last weekend. The kids had a blast. Now that Zachary can travel, we hope to see them more.
Today was my new nephew Jake's Bris. The kids had a blast running around at grandma and papa'a house. Cousin Bruce spoiled the boys with toy cars and LOTS of cookie's. Now Kyle thinks his name is cousin "Bris"! I love to watch the boys play.
Zachary will go to clinic on May 9th. Please pray for continued good counts. It seems as though we have beat this JMML beast...but only time and counts will tell. We are so lucky for how far Zachary has come.
Dana
Thursday, April 18, 2002 at 05:10 PM (CDT)
yeah! We have a new nephew: Jacob Alexander was born 04/24/02 11:36am, 7 pounds 11 ounces, 20 inches. Mommy and baby are doing great. Congrats to Laura, Scott, and big brother Ryan
PLEASE PRAY HARD FOR LUKE DO AND SIGN THE WEB PAGE, THINGS ARE NOT GOING VERY WELL (HE ALSO HAS JMML) http://www.caringbridge.com/ca/lukedo
Guess what...7 in a row...100% donor cell.
***April 22, 2002 Happy Day 200 Zachary!!!***
We are certainly blessed. As far as JMML goes, Zachary has had a fairly easy journey. It is hard to understand why 2 kids can have the same diagnosis with such different outcomes. We really need to be thankful for Zachary's success. Things look favorable that Zachary has beat JMML, though we really don't know.
Zachary goes back to clinic on May 9th. No IVIG...no DNA fingerprinting...just routine (oncology routine) blood work and a visit with the doctor.
Zachary has loved getting out of the house. He has gone to Friendlies, McDonalds, the mall, Toys r Us (I'll be working overtime to pay off that bill!), and a birthday party. We had been very strict to the post transplant rules, and it sure did pay off. Now as the weather is getting warmer, you can often spot Kyle and Zachary cruising in their cars. Kyle drives a mud truck (or go cart) and Zachary drives
a little jeep. (Like I said it was an expensive trip to toys r us).
Even though we move forward...taking many steps away from cancer, we must remember the horrible battle many little soldiers are fighting. Please pray for Luke Do. He too has JMML, and though he has engraphed his new marrow, he is fighting serious complications from GVHD. Kayli and Cindy, also with JMML, are still waiting to graft their new cells. Colby, another with JMML, is waiting to hear his percent of donor cells...lets pray for 100%! We hope Sami and baby Jake will have clear scans forever. Mikey...what can I say, I miss you and love you...Heaven has a special angel.
Dana
Thursday, April 11, 2002 at 05:08 PM (CDT)
Today Zachary had his scheduled appointment at CHOP. Everything looks great. His CBC was...NORMAL. He had his last dose of IVIG. They drew the blood for the DNA finger printing, we will have those results in about a week. They also tested his immuneglobulin levels just to make sure that he doesn't need any more IVIG.
So for even more good news...Zachary will no longer need to have DNA fingerprinting done. The doctor also said that he is free to go out, but to just avoid crowds (watch out Friendlies, here we come!). I was very excited when she said that Zachary is also free to travel...but then I remembered that Stuart has no vacation time...but it was great to hear he is allowed to. I will post the DNA results next week. Oh...I forgot to mention, Zachary got his first post treatment hair cut! Thank you for all of your ongoing support.
PLEASE PRAY FOR THE DELEON FAMILY...THEIR 3 YEAR OLD SON MICHAEL LOST HIS 15 MONTH BATTLE WITH NEUROBLASTOMA. CHRISTINE AND JOSE WERE A GREAT SUPPORT TO ME DURING ZACHARY'S TRANSPLANT...MY HEART BREAKS FOR THEM.
Wednesday, March 20, 2002 at 03:41 PM (CST)
***UPDATE 3/22/02...Zachary had a visit with Gastroenterology today. This was a follow up for the ulcers he got in transplant. The plan is NOT to do a endoscope (YEAH!). We will try to put him back on the carafate before bedtime to see if it helps him sleep (it coats and protects the stomach). I will call the doctor back after 2 weeks to update him. He feels the ulcers are probably healed, but will intervene if symptoms appear. One less thing to worry about.
100% Donor cells...can you hear me yelling it from my roof top?
This is our 6th 100%, but who's counting? We are very excited. Even though I am less anxious for the results, it is still torture. JMML is a very aggressive cancer with a high relapse rate, so you can see why these DNA results are so important (if you want to read about Zachary's cancer, there is a link at the bottom of this page). His next check will be on April 11th. At that clinic date they will check his immuneglobulin levels, along with his other normal blood work. Zachary will receive, hopefully his last dose of IVIG.
During the summer, Zachary will be off most of his restrictions. We will try to orient him to the normal life of a toddler. Zachary has spent the majority of his tender 2 years sick and in hospitals, I can't wait to show him what life is really like.
God bless and protect my JMML family that are in the most crucial part of treatment, BMT. Luke and Colby have just had their BMT, Kayli and Cindy are next week, and Libbie will follow in June.
Dana
Tuesday, March 12, 2002 at 09:31 AM (CST)
***CHECK OUT THE NEW PICTURES
***PRAYERS PLEASE; some of my JMML family are in the most crucial part of treatment, BMT. Colby received his marrow today (3/15), Luke is in pretreatment and will receive his marrow on Monday, Kayli will be admitted on Monday and will receive her marrow on 3/25. Cindy and Libbie will be soon to follow. God bless them and protect them.
***Update***We are home. Zachary wasn't discharged until 11:40 pm. He wouldn't sleep alone in his bed last night, so he snoozed with Stuart and I. His blood culture was negative for 24 hours, I am assuming the "snot" culture was negative too. Zachary's counts are great so I certainly expect to hear that the cells are 100% donor.
Zachary really likes to keep life interesting...he was admitted to CHOP yesterday for a fever. Normally, kids get fevers when they go home after transplant...well, Zachary is a late bloomer. Here we are over 5 months post transplant and with our first fever.
Kyle had a bit of a cold, more like a post nasal drip. Yesterday, Zackie had the same symptoms. In the afternoon, Kyle felt warm so I took his temp...99.1, not too bad. Kyle insisted on taking mine...normal. Then he made me take Zachary's temp...101! I called the doctor and they said since he is not very far out of transplant, even though he doesn't have a line and is not neutropenic, he had to go to the ER.
Once we got to the ER, Zachary's temp was normal. Still they insisted we stay. When he got to 3East, his temp was back up. He has been getting antibiotics and had a blood culture drawn. We should be home tonight if the culture is negative at 24 hours.
It is so strange to be back. All in all, Zachary is in the hopspital for the common cold, but better to be safe than sorry. The good thing is that he was due for his IVIG on Thursday, so they will do it today instead. They will also draw the DNA...shooting for our 6th 100%.
We are on 3 East room 30. 215-590-6330.
Dana
Tuesday, February 26, 2002 at 01:46 PM (CST)
Hi Everybody!
Just a little update on Zachary...Once again...100% donor cells. This means that all his marrow and blood is from Kyle's cells. We never want to see Zachary's marrow come back because that would mean the JMML is back. So here we are another month in remission. We won't be able to call him cured for quite some time as JMML has a high relapse rate. On the positive side, most kids that do relapse, relapse quickly. We are just about 5 months post transplant!
Zachary is doing very well. He will have another IVIG treatment to boost up his immune system on March 14th. I am slightly concerned that Zachary huffs and puffs when he is running around, but the fact of the matter is he was bound to have some damage from chemo. One of his transplant chemo drugs has lung damage as a side effect. I wouldn't say he is short of breath and he can keep up easily with other kids. Zachary still wakes up at night. He will have a GI visit April 23rd to check on those ulcers. His blood sugars have been fine (no wonder since he eats so much!).
Kyle is also doing great. He loves nursery school and plans to attend big boy camp this summer. He loves to bake cookies with Daddy...or more like eat cookies. He is becoming a pro at the computer. Nascar is still his favorite sport. Kyle will most likely get to see 2 races this season.
I hope to have new pictures soon. Zachary looks so different with his straight dark hair (I do miss the curls!). Thanks to Chris, Gooch's mom's recommendation and grandpa for buying, I have a new program to make collages of pictures
So this update was not so mini. My prayers go out to the members of my JMML family...Kayli, Cindy, Luke, and Colby that are in the midst of treatment and to Brian as he strives to catch up to get back into a cancer free life. Of course we can't leave out Sami, she is on the mend, a real trooper!
Dana
Thursday February 14, 2002 7:42 PM CST
Happy Valentine's Day!
Today's visit went VERY well at CHOP. Our appointment was for 9:30am, but we didn't arrive until after 10:30am. We were stuck in traffic, UGH! When we got there we did the normal routine...checked in, played with glue, got weighed, took vital signs, and met with the doctor.
As far as the doctor's exam, all is status quo. Zachary is doing great, what a blessing! Zachary received lots of Valentines and candy (and stole one valentine...sorry Jen). Our next step was the IV stick and blood draw...I gave Stuart the pleasure of holding down a child who instantly turns from a 29 pound child into the Hulk. Zachary survived... and so did Stuart and the nurse. Next we were off to the Day Hospital.
The IVIG (the stuff used to boost up Zackie's immune system) went well. Some of you may remember how poorly he responded to this treatment in the past. This time they used a different brand. Zachary did awesome! He didn't pull out his IV (well he has learned by now that it will only be put right back in), he sat in one chair for the WHOLE day, no complaints. He did, thank god, take a benadryl induced nap.
Zachary got a visit from his favorite nurse Anne. Anne sure takes primary nursing very much to heart. She was with us from the start and continues to follow Zachary's progress even though he is no longer treated inpatient. Zachary's girlfriend, Sami, also paid a visit with a hand made valentine (congrats to Sami on finishing the hardest parts of her treatment tomorrow!)
Guess what...Zachary's platetets are 331,000. That is a record for him. I think the blood bank will be calling soon demanding he return some (just kidding!). His white count is normal, his ANC is normal...all of it is normal! What a great Valentine's gift. Zackie's DNA test was drawn, but I find myself less and less anxious for results.
Thank you so much Lisa for taking care of Kyle all day. You are a super women with more stamina than anyone I know. I don't know how I would survive with out you.
Stuart...What a great date today...Valentine's Day together at CHOP. Well hun, this is our life, but boy do I love getting to spend the whole day with you, no matter where we are. Your help today was much appreciated (and needed).
My three favorite boys still managed to shower me with candy and flowers. All in all, this was a great day!
Dana
Monday February 4, 2002 5:39 PM CST
4 MONTHS today! Time is really passing quickly. Zachary continues to do well. He wont be back to clinic until Feb 14th. His donor cells remain at 100% with no sign of JMML. He is growing and gaining weight. Zachary still gets up a lot at night. Maybe they are just nightmares...who knows.
Stuart and I went away for the weekend. It was great to get away, just the two of us. We were supposed to go to Aruba this past October, but Zachary changed those plans for us. Instead, we went to Boston. We had a GREAT time. This was the first time I had been there, and Stuart's second. There was lots to do...too much for only a three day stay. My gosh, was it cold on Saturday. It was great to go to a nice restaurant (one that is not Mcdonalds). The first thing I thought was how great it was to have a candle lit at the table and not have a child want to blow it out and sing happy birthday!
As far as Zachary's post- transplant blood work...His IGG levels remain on the low side. He will now get IVIG once a month for 3 months. I am not looking forward to that. Zachary had had it twice before and reacted poorly to it (temps and nausea). The doctor now has a heads up and will premed him accordingly. These treatments will be done as an outpatient in the clinic. Ann...this means you need to visit us, Zachary will be at the day hospital most of the day.
We are still waiting on Zachary's ATCH level. That was the test for his adrenal gland that we had to repeat due to a high level. I should know about that tomorrow.
I better get back down stairs...I think they are feeding the dog their dinner.
Dana
Thursday January 24, 2002 1:47 PM CST
Today was Zachary's day at clinic. Things look great! Would you believe he is up to 29 pounds. His counts were excellent. The white count is up to 5.4, the hemolobin is 12.0, and his platelets are...drum roll please...232! The rest of the results, including the DNA, will not be back until next week.
Zachary was tearing up the joint at clinic. I, in my ultimate wisdom, paid the price by not taking the stroller in. I think the whole hospital scene is getting old for Zackie. He was so compliant during treatment. Now I pretty much have to sit on him in order for them to get a blood draw. All in all, this is normal; what kid wants to have a venipuncture. I guess while he was sick, he some how knew the doctors would help him, regardless of the ouchies.
We were so lucky to bump into our transplant buddy, Mikey. I learned today that he had taken a turn for the worse, but manage to fight his way back despite the odds. Mikey... you are a miracle, I love to see you smile. Sami...you keep shining, keep those cells growing. Meg...day 100 is approaching, break out the party hats! Kayli...best of luck on your splenectomy tomorrow.
Dana
Saturday January 19, 2002 8:51 PM CST
Hi everyone, check out the new pictures. Once I figure out how to make a collage of pictures, I will add more.
There is not much to update about. I guess that is good news. Zachary continues to do very well. He will go to see the oncologist on Thursday. He is gaining weight. I guess that is due to his enormous appetite (back to the old Zackie!). He is still waking up at night. We haven't figured that one out. Maybe he is having nightmares. I would be too if I went through what he did. He falls asleep easily with a reassuring hug and some sips of juice.
The boys had a blast with Nana and Pop Pop. Zachary doesn't get out much, so he loves visitors. Tomorrow Grandma and Grandpa are coming over to babysit. We have a baptism to attend (anything to get a break!).
Today Kyle got to play in the snow. This was our first measurable snow fall. He loved it. I was hesitant to allow Zackie out, I know...I'm too overprotective. We have come this far with no visits to CHOP for infection. I would like to keep it that way. I will ask about it at his visit, and then maybe if it is ok, he can frolic in the next snow.
I will update next after Zachary's next appointment.
Dana
Saturday, January 12, 2002 at 01:27 PM (CST)
LETS CELEBRATE!!! Zachary is at day +100! I can't believe it has been that long. It seems like yesterday that he was diagnosed with JMML.
Zachary continues to do very well. He will go back to CHOP for an outpatient visit on Jan 24th. They will further test his immune function. The visits to the oncologist are spacing out, which is allowing us to feel more normal. By the time spring rolls around (not like we have seen much of winter yet), Zachary will be able to do more outside the home.
Tonight, Stuart and I will go out to dinner to celebrate this wonderful milestone (thank you Laisa and Jim for babysitting). Tomorrow Nana and Pop Pop will visit for 4 days. The kiddies are very excited.
Thank you for continously checking in on Zachary. We love reading the messages in the guestbook. We have started to receive the gold ribbons that were on the candlelighter's awareness tree. Thank you to those that honored Zachary.
Dana
Thursday, January 03, 2002 at 08:03 PM (CST)
DAY +91!!!! Zachary had a visit at CHOP today. Things look great. It is so nice to have a doctor's visit and for once not have many questions or issues to discuss. His counts were great. The white count is a bit more normal. His platelets are still above 200 and his hemoglobin actually went up. The other blood test results will be ready next week. Guess what?...NO MORE MASKS!!! Zackie definately won't miss those!
After Zachary's clinic appointment, we headed over to 3East to visit Sami. She is Zachary's little friend (really girlfriend, but don't tell that to Dan, her daddy). They had a blast playing and blowing kisses through her transplant door window. I can't wait until they can actually play together in the SAME room! We also loved seeing Marie, one of Zackie's nurses, but we do miss Anne (we come back on the 24th...hint, hint).
Zachary's vocabulary is constantly expanding. He has great manners and says please, thank you, excuse me, and sorry. He recently started speaking in full sentences. Today, in the car, he spilled his cheerios and proceeded to discipline himself by yelling "what did I do!". He amazes us everyday.
Kyle has also really blossomed into a young man. He is our "bad word" police man, by scolding us with "what did I say about those words...". He is having a very successful year in nursery school. Blue's clue's and Rugrats are fading out, as Shreck and ET become his favorites. His favorite sport is still Nascar, he knows who drives what car! You can often find Kyle using his lap top (VTech) computer preaching that he has work to do in order to get money to go to Friendlies.
2001 was full of heartache and stress; ie. Zachary's cancer, the events on 9/11, the death of our cat, and the mutilation of our new couch (thank you Dakota!). 2002 will be about mending. Zachary's new marrow is cancer free and Berkline will be sending the new part for our couch. Our hearts and minds are healing. We have gained new insight into the world around us and plan to earn for the rest of our lives the miracle god has given us.
Dana
Monday, December 31, 2001 at 01:34 PM (CST)
WOW! The last update for 2001. We are VERY happy to see this year end. Things are going very well. Zachary's hair finally fell out, 2 1/2 months later. Now he has some new hair growing in. I am very curious to see if it will be darker, as it appears now, and if it will still be curly. We haven't been to the doctor since he left the hospital for his fasting study. He has an appointment for Thursday. He will get a blood count that will hopefully be better than his last and they will also test his immune system by drawing immune globulin levels.
As of the 4th, Zachary will be 3 months post transplant and we can kiss those masks goodbye. He will still need to spend his time home, no crowded places or restaurants yet. People can come visit if they are cootie free. Zachary is doing very well with his eating. We dont miss that tubie one bit.
And the big news...he still has 100% donor cells. I love this test because it lets me know Zachary is ok, but waiting for the results is torture. He will have another test probably in 2 weeks.
Check out, if you haven't already, the new pictures. This is the last set with his tubie in.
Have a Happy and Healthy New Year,
Dana
Thursday, December 20, 2001 at 09:41 PM (CST)
Yeah! We are home...one day earlier than expected. Zachary was discharged around 7pm. His fasting study actually ended at 2pm, but they had to make sure he was eating well before they let him go home. I was so sure we would be there until tomorrow. This was actually his shortest hospital stay.
Zachary was admitted to 7East, the endocrinology/gastroenterology floor, yesterday at 4pm. He got a tour of the unit then insisted on watching a Blue's Clues video (surprise, surprise!). He chowed on dinner, got his meds, and began to fast. It wasn't a big deal because the bulk of the fast was during the night when he would normally not be eating. He began with a blood sugar of 105(ish)...normal. Their intention was to have him with no food for up to 36 hours. If he never dropped below 50, most people can maintain normal sugar level for that long, the test would just end with a bunch of blood draws, dinner and a clean bill of health.
Well, a clean bill of health is never the case with Zackie. By 2pm, only 18 hours into the study, his blood sugar was 45 (normal is 70-110). At that time they drew lots of blood and administered gluco-gen. That drug forces any sugar left in his body's reserves to go into his blood stream. This part of the test makes sure he is depleting his stores. His sugar only went up to 68, good news. He was allowed to eat 40 minutes after the drug. He sampled everything they had to offer for him, but not before he downed a glass of V8 splash.
So..long story short...not, Zachary has a condition called ketonic hypoglycemia. All that means is he uses up his reserves faster than normal. They sent him home with a machine that tests blood sugar levels and instructions to not let him fast for more than 12hrs. That seems easier said than done being he sleeps for 12hrs at night. We need to give him a snack before bed and feed him immediately when he wakes. All in all, not a big deal for him.
They did a lot of blood work on Zackie that we will have results on in about 3 weeks. This diagnosis is most probable, but not set in stone. On the oncology end of things, Zachary had his DNA testing sent out today. His wbc count was a bit down, but they told me not to worry. I will call the oncologist tomorrow to discuss this further. It is my understanding, though, that the counts will continue to go up and down for a while. Zachary, you are a real trooper; I don't think I could sleep through finger pokes. As always, you are my inspiration.
Dana
Friday, December 14, 2001 at 01:27 PM (CST)
There really has been no change since the last update. Zachary had a visit at the oncology clinic yesterday. His counts are holding steady. Each month we are out of transplant with good counts, the less likely he will relapse. JMML tends to relapse quickly, but we wont be able to breath easily until 2 years post transplant. They will continue to do the DNA testing monthly. He is due to be tested next Thursday.
Zachary will consult with Gastroenterology on Tuesday as a follow up for those nasty ulcers. On Wednesday, he will be admitted for his hypoglycemia testing. Feel free to come visit, we will be bored since he has to stay in his room. By Friday, he should be home just in time to have a visit from Santa.
We don't expect to get any bad news from this test. So far all his blood work has come back normal. For some reason he was using up his sugar reserves too quickly. The good news is he has gained close to 2 pounds in 2 weeks. I really think the feedings at night have helped. He is now eating very well during the day. All in all, he is up to his pre-transplant weight.
Dana
Saturday, December 08, 2001 at 09:40 PM (CST)
I know...I am slacking. This is the first chance I had to update about Thursday's visit to CHOP. It has been a busy couple of days. I had to work Thursday night. Friday the kids had me running and I had to nap from working all night. On Friday night we had our holiday party (what a blast). Today was the "Ocean of Love" holiday party,then later we celebrated Hanukkah...one day early. For once it was a NICE kind of busy.
Once again, I am thrilled to report Zachary's DNA test showed 100% donor cells. He will be retested every three weeks. His platelets are 277! I get so caught up on the platelet count being he started all this with a platelet count of 3. The whole blood count was awesome...GO, ZACKIE GO!
Zachary was seen by the endocrinologist. They drew lots of blood testing his thyroid, growth hormone factors, and other stuff that may cause hypoglycemia. He will be admitted on Dec 19th for one or two nights for further testing. I am sad we wont be on 3East (oncology), but I guess being on a different floor is a good thing. Anne and Carrie, how about floating to 7 East those days???
We are still not sure if he is having a problem with his blood sugar. I started doubting myself when I realized he would have to be in the hospital again. The doctor put my doubts to rest when he said "Zachary has fought hard to beat cancer, lets not risk losing him to an unknown disorder.". He is exactly right. Had I not pushed for another bone marrow test in April, he may not be with us today. I need to trust my instincts, worse case scenerio...he is discharged home with a seal of good health.That would be the best case for us (not the insurance company).
The boys had a ball opening up all the presents today. They were completely overwhelmed...me too! I never realized how generous people can be. The boys had LOTS (to say the very least) of toys given to them. Grandma and Grandpa; Nana and Pop Pop; Aunt Julie, Uncle Matt and Amanda; Aunt Jill; Aunt Laura, Uncle Scott and Ryan; Ocean of Love; The Emmanual Foundation; and of course the amazingly generous people at Cytodyne; you have all really made our holiday.All of you have made us feel very special. We are bessed to have you in our lives and to have our beautiful Zackie home for the holidays and in remission.
Dana
Friday, November 30, 2001 at 08:43 AM (CST)
Sorry I didn't have a chance to post yesterday. Things went well at CHOP for Zachary. His CBC was AWESOME. It is hard to believe Zachary has such great numbers. His platetet count is 230!!! NORMAL! Things, for the most part, check out fine.
The only issue Zachary is having may possibly be low blood sugars at night. We are not sure, but he does have all the symptoms. This actually has been going on for a very long time. He wakes up at night cold and clammy.It was hard to judge because he spent a lot of time inpatient and had IV or feeding support at night. At first we felt he was waking at night because he was used to sleeping in the same room as me. We even just convinced ourselves he is a typical 2 year old. I am not so sure. We reinserted his NG tubes so he can be tube fed at night. This will protect Zackie from dropping his sugar levels due to fasting at night. He will see the endocrinologist next Thursday. Hopefully they will say...hmmm, looks like hypoglycemia...but it's not. We can only wait and see.
They took another DNA sample, this time by blood. We will have those results in a week. Otherwise, what can I say, Zachary makes this look easy. We are still prepared for anything. Anything other than JMML, of course!
For those of you that checked out goldribbons.com to see Zachary's picture and saw Kyle's instead, that has been fixed. If you haven't seen the e tree, go to the link below and view the 2001 tree. Click on the letter "D" to see Zackie, but check out all those brave kids and special angels.
Dana
Tuesday, November 27, 2001 at 01:09 PM (CST)
Just updating to let everyone know that Zachary is doing great. He is still eating like a normal 2 year old, unfortunately that is not very much. At this point we know it is behavioral. He has a great amount of energy. We will go back to the clinic on Thursday. They will take a sample of blood from Zachary to do DNA testing on. Pray he will get another 100%.
Thank you to everyone who purchased a ribbon for Zachary through www.candlelighters.org . The ribbon will be hung on the childhood cancer awareness tree and then will be mailed back for Zachary to put in his "I beat cancer" scrapbook. We are so fortunate to have a big circle of support. We could have never made it with out all of you.
Dana
Tuesday, November 20, 2001 at 12:45 PM (CST)
Things are going great here. I was told that it would take time for Zachary to get back his energy; if this is the case, I better buy new running shoes. He has more energy than Stuart and I combined. He naps the same as he had before transplant. The only difference is he wakes up at night with nightmares. Kyle was worse at 2, so this is no big deal. We plan to break down the crib since it has been vacant ever since he got his cool car bed.
Every day varies with Zachary's eating habits. He prefers cookies, thank you Grandma! To him, candy is the perfect substitute for veggies. Wow, we are dealing with NORMAL toddler stuff! He doesn't seem to mind being under house arrest. He did, though, try to escape with Grandma and Grandpa when they came to baby sit while Stuart and I went out to dinner.
Congrats to Meghan on a successful BMT and making it home in time for her 1st birthday and Thanksgiving. Kudos to Sami, as those stem cells keep multiplying. Our prayers to Kayli, who is fighting JMML. She is where we were back in May. Pray that they will find a perfect donor or even better...add yourself to the registry. A peaceful Thanksgiving to all of you and yours.
Dana
Thursday, November 15, 2001 at 01:28 PM (CST)
Are you sitting down?...100% donor cells!!! I cant believe it. That was the best news we could have gotten. His blood count today was great. His platelets are 183. We don't have to be back to the clinic for 2 weeks. At that time, they will send a blood sample to repeat DNA testing. They will do this every 3 weeks.
Zachary loves his new bed and now he has his Blue's Clues comforter from Nana and Pop Pop. His language development is taking off. He says everything. I guess he didn't feel much like talking in the hospital, who can blame him. His weight is stable, so no tube for now. He is doing great with eating. Hopefully we will have an uneventful Thanksgiving, we have a lot to be thankful for.
Dana
Sunday, November 11, 2001 at 08:23 PM (CST)
Things are going great at home. Zachary is starting to really pick up on his eating. Last night he accidentally pulled out his NG tube when he turned over in bed. We just left it out. It is very tough to get him to take his meds (I used to put them in the tube). Hey Anne and Carrie, want to come over twice a day to give him the meds; remember how fun it is? We will leave it out until his next doctor visit. If his weight is stable, then we will keep it out. He completely looks normal now...no more "tubies".
The boys got a visit over the weekend from their Aunt Julie, Uncle Matt, and cousin Amanda. They came bearing lots of cool presents. Today, Grandpa stopped by. Grandma and Grandpa bought Zachary a race car bed for Zachary's birthday. Today, Stuart set it up. Zachary was delighted. He refused to go in his crib, so right now he is in the new bed. I thought it would be a hard transition...guess not. All we need is real bedding for it, I think Nana and Pop Pop are getting him that for chanukah. I thought he would like a race car comforter, but I think he wants Blue's Clues.
Zachary's next appointment is on Thursday, so I will post then.
Dana
Thursday, November 08, 2001 at 10:17 PM (CST)
DAY +35, for those of you keeping track. Zachary had a visit at the CHOP oncology clinic. He started his visit with a weigh in and a blood draw. I am happy to report it was the last draw from his broviac. From here the waiting around began; I am never really sure what we are always waiting around for, but I am very used to it. The doctor gave Zackie a look over, no problems found. His blood sugar was low from having a poor appetite the day before and then having no overnight feeding. They hung an IV with dextrose to bring up his level so they can safely administer anesthesia. That I know was part of the waiting.
Zachary went to sleep very easily under general anesthesia. This time he did not require a breathing tube. The bone marrow aspiration took no time at all. The broviac removal, on the other hand, took much longer. For those of you not familiar with a broviac, which I'd hope you wouldn't be, It has a cuff which the skin heals around to hold it in. The longer you have the line, the harder it is to remove these adhesions. Regardless, the line was removed with no complications.
Once the procedures were done, Zachary was taken to the day hospital to recover. He woke up like a rabid animal. He was screaming and carrying on. I have the war wounds to prove it. After 30 minutes of non stop kicking and screaming, he stopped and calmly requested juice; so juice he got. They gave him some tylenol with codeine to ease any discomfort he had. The rest of the day he was great. No complaints at all. Of course I, on the other hand, am very sore.
When we were discharged from the day hospital, we went to visit the oncology ward, 3E. Zackie got to see his favorite nurse, Anne and his girlfriend, Sami. We didn't hang out too long because we were all exhausted.
Now the best for last, unless you skipped to the bottom for the results from today. Zachary's white count was 10.5, with an ANC of 7455 (that is normal), his hemoglobin was 12.1 (normal too), and his platelet count was 121,000 (the highest count Zach has ever had). As for the bone marrow, preliminarily, it appears to be normal marrow. This will be confirmed when his doctor looks at it tomorrow. The rest of the marrow was sent to minnesota to be analyzed. They will determine what percentage of the marrow belongs to Kyle, and what percent is Zachary. Our hope is for less than 7% of Zachary to call this a success.
We ask for your prayers to continue. We know things look great now, but JMML is a tough cancer to beat. Usually, it comes out of remission quickly. The doctors will watch Zachary closely. We hope this will be the end of treatment for Zachary and words like cancer, chemo, bone marrow, and broviac will not be normal household words for us. We pray this will be over so that Zachary will have no recollection of his disease and the battles he had to fight. So I shall go to sleep with a huge weight lifted off my shoulders having heard the word NORMAL said many times in the same sentence and Zachary's name was.
Dana
Monday, November 05, 2001 at 08:28 PM (CST)
I am very happy to say that there is nothing new to report. On Saturday, Zachary celebrated his 2nd birthday. We had a cake for both boys (their birthdays are only 4 days apart). It was a great day. The boys were exhausted from running around and eating tons of cake. I wish we could have had the whole family there, but Zachary is on very strict precautions so our visitors were limited.
Zachary still has his scheduled appointment for Thursday. We hope to avoid any fevers or unexpected hospital stays. Taking the broviac line out will protect him a bit from infection. Unfortunately, as we all know, winter is approaching fast, bring all kinds of fun cooties. Wish us luck and we will do our part to protect Zachary.
My next post will be Thursday. Please add Sami and baby Meghan to your list of prayers. Both are in the process of transplant. Meghan is in Boston and Sami is at CHOP (Zackie's girlfriend). Hopefully they will soon be home, safe and sound.
I added new pictures from their birthday, check it out.
Dana
Thursday, November 01, 2001 at 08:41 PM (CST)
Today was Zachary's first post transplant outpatient visit. Things look good so far. His ANC was 972 and his platelets and hemoglobin are holding steady. Everything checks out well. Next Thursday, Zachary will have a bone marrow aspiration. This will tell us 2 things. 1: if all the cell lines are back; reds, whites, and platelets, and 2: who's marrow it is. The first we will know that day, the latter, we will know one week later.
Zachary is really starting to pick up on his eating. He was able to skip his tube feed this afternoon. Hopefully, he will be off feeds soon, but I like the tube because I can give his meds through it. The boys were very playful today, things feel back to normal. Of course that is if normal is cleaning the house constantly to keep out cooties, giving many meds all day, mouthcare, broviac flushes, and setting up tube feedings. I can't wait to go back to work so I can relax. The days are very busy, but this OUR new normal.
Thanks to everyone for the many calls checking in on us. We have lots of great friends and family. I hope to have new pictures on the web site so you can see how great Zackie looks.
Happy anniversary to Grandma and Grandpa, We love you much.
Dana
Tuesday, October 30, 2001 at 09:18 PM (CST)
Home sweet home! Zachary got home Monday afternoon. We were greeted outside by Kyle and Grandma with balloons and all. It was great watching him walk in the house as if he never left. The house was amazingly clean, what a treat! Things went back to normal quickly.
The visiting nurse came in the evening to start Zackie on home tube feedings. It is really working out great. He gets all his nurishment when he sleeps, and eats whatever he can while he is awake. Today, he really started to pick up on the eating. Our biggest problem was the first night sleeping alone. Zachary didn't want me to leave. Tonight he only cried for a couple of minutes, then went to sleep. He adapts very well. On Thursday, he will go to the clinic for a blood count and check up.
Today was Kyle's birthday, 4yrs old. He had a party at school; Grandma provided the cupcakes. They also did there halloween party. Kyle dressed up as an astronaut. In our town we trick or treat on the 30th, so he went with his daddy and friends. I better go prepare tomorrow's medications, that is a job in and of it's self.
Dana
Sunday, October 28, 2001 at 09:00 PM (CST)
DAY +24. Yippie! My last journal entry from CHOP. We are definately going home tomorrow. Zachary has been doing great. We are at the point that when we look at him he seems to be out of place here. He spent a lot of the day roaming the halls. Of course, when Grandpa, Grandma, and Aunt Jill were here, all he did was sleep. Even so, they know him enough to know how wonderful he is doing.
Today Zachary started to drink. And so it went...8oz in...8oz out. Later, 2 oz in...2 oz out. Ok, lesson learned...stop giving him the same juice that is making him throw up. His body can't seem to handle his favorite V8 splash. He seems to tolerate iced tea and gatorade, so we shall stock up (decaf of course!). He still only takes bites of food here and there. Cookies are a hit! The tube feedings provide all of the nutrition, so we can take things slow. I think Zackie will do better at home.
We will miss all of our friends here. Hopefully we wont ever be a patient here again, but realistically, transplant comes with other issues, so we may be back. Being here has really opened my eyes up. I have now seen it all, a celebration for the end of treatment and the sadness and despair when a child earns his wings. We will walk out of here not knowing if Zachary is cancer free, but we will sure be celebrating this wonderful milestone. Zachary did it...he made it through a bone marrow transplant. Zachary, you are my inspiration. Your strength is greater than anything I have ever known. Kyle, you are our hero. How many people can say they saved a life, all by the tender age of 4. Happy birthday to you both, and MANY more to come.
Dana
Friday, October 26, 2001 at 10:00 PM (CDT)
DAY +22. Zachary did great today. He ran around the unit as though things were back to normal. He was dressed in normal clothes. Zackie had a great time playing with daddy. When Stuart went to get dinner, he walked a round the halls chanting "I want dada". As always, Zachary amazes me!
We are still on target to go home on Monday. He only infrequently has blood in his stool. He got some platelets to help the ulcer clot. I imagine by morning his platelet count will be close to 100. His white count is up to 2.0, but the ANC varies day to day. Zachary started to eat food today. He had some french fries and oreos. I would say he is right on target for a toddler diet.
Dana
Thursday, October 25, 2001 at 10:25 PM (CDT)
DAY +21. What a great day. Zachary is only on one medication by IV. The rest were changed to meds by mouth. The Cyclosporin, which is the one by IV, will also be changed tomorrow. Zachary will be a free man. No more IV pole. Zachary will only have his feedings at night and during his nap. Finally, he will get to run around while a wake. He has been doing great wearing a mask. What a cutie!
All in all, a super day. You have to know though...the day couldn't be perfect. At about 10pm, Zachary had some blood in his diaper. They ran a STAT blood count. His hemoglobin was nice and high; 13.2 and his platelets were at 52. The plan is that if he has another bloody diaper, they will give him platelets. I have checked his diaper since and it was dry. Last time, once he started to bleed, it didn't stop. I think the ulcer is just oozing.
Today, Zachary started to eat. He is no longer pooling saliva in his mouth. He even took a few sips of juice. The big problem is that food doesn't taste very good right now. As the taste buds start to come back, he will have a better interest in food. We will take what we can get for now.
Zachary got a visit today from Cousins Bruce and Shelley. It was so great to see them, they came a long way. In the afternoon, daddy came. Thanks for the food sweetie! We look forward to coming home, but we want to be sure Zachary is ok. I can't wait to celebrate my babies' birthdays; Kyle will be 4 on the 30th, and Zachary will be 2 on the 3rd. I just hope they don't grow up too fast.
Dana
Wednesday, October 24, 2001 at 09:31 PM (CDT)
DAY +20. Not too much to report today. Zachary's counts are great. His ANC is 1083. His platelets are holding steady at 72. That marrow is working great. We will have a better idea about engraphment when he has a bone marrow aspiration next week. Zackie's spirits are great today. He had so much energy, that he didn't even take a nap. Today, I saw the old Zachary, my wild child.
They have slowly been increasing the tube feedings. Zachary is tolerating it really well. He has the desire to eat, but is afraid to swallow. All that will come in time. We are getting ready to be discharged. Most of his meds were changed to meds by mouth. So far, we have put them in the tube, but tomorrow I will try to have him swallow them. His home care has been set up for Monday to get the pump for the feeds.
Thanks to Grandma, Grandpa, and our close friends the Dolans, the house has been professionally cleaned; carpets and all. You guys are amazing. Stuart has been working really hard to get the house in order, be the primary caretaker of Kyle, and work. I couldn't have done this with out you sweetie, you are the best! I can't wait to be a family again all in the same place. We are almost there. To the gals at CMC, I miss you more than you know, so break out the chinese food, I'm coming back!
Dana
Tuesday, October 23, 2001 at 11:15 PM (CDT)
DAY +19. Today was a great day. No major problems, for once. Zachary woke up with a big puss on his face. He hates the NG tube. He spent most of the day watching his videos and cudling with me. By afternoon, he was my normal happy baby. He got to play with his daddy. In the evening, he was running and playing. We are over this big bump in the road.
Zachary's blood counts are great. We replaced the huge NG tube and put in a smaller feeding tube. He is tolerating the tube feeding very well. He doesn't mind the smaller tube as much. We found that he is definately allergic to all the GI acid blockers. They tried prevacid, and he got hives. Now they hope the tube feeds will coat his stomach and reduce the PH in his stomach. He gets carafate to coat the ulcer. They also give him maalox.
The projected date for discharge is on Monday. Zachary's counts are great, but we have other milestones. He is now on a daily blood pressure med, Noravasc. Once he is off the cyclosporin, his BP will go back to normal. He needs to be taking all his meds by mouth, not IV. He needs to eat or have tube feeds; or both. Of course, we need to stop having hives and be sure he has no more bleeding. Things are back on track. What a mighty little man!
Dana
Monday, October 22, 2001 at 10:33 PM (CDT)
DAY +18. When Zachary decides to cause trouble, he does it good. He continued to have large amounts of blood in his diaper over night. He had 2 platelet transfusions and 2 packed cells. By morning he seemed a bit better, but still very concerning. They decided he would need to go to the OR during the day. The nurse placed a nasogastric (NG) tube to see if there was still blood in his stomach. Zachary fought with all his might. The first time she put it in, he ripped it right out. The second time he coughed it out. Third time was a charm; along with NO-NO restraints. Oh boy did he hold a grudge.
Around 1:30pm, Zachary went to the OR. They did a endoscope and sigmoidoscopy with fiber optic to find the bleeding area. This was all done under general anesthesia. He recovered very well. The story is that he has atleast two ulcers in the duodenum, below the stomach. The one that was probably bleeding, was clotted off on it's own (thanks to the 2 bags of platelets). They also noticed some gastritis in his stomach. In addition, they took biopsies of several areas to test for Graft vs Host disease. The important thing is that he is no longer bleeding and this horrible episode is over. Of course, the doctors wanted to use prilosec since he is allergic to zacntac, but Zackie is allergic to it also. He keeps those docs on there toes.
Tomorrow we will get a better plan about Zachary's nutrition. Right now, he is on hyper al (minus the zantac and some other questionable addtitives). He still has an NG tube and they hope to give him some feeds through that too. Zachary's ANC was...1750!!!! Things are improving.
Dana
Sunday, October 21, 2001 at 10:27 PM (CDT)
Here is a mini update. Things are very busy for Zachary right now. This evening, he began to vomit blood. At the same time he filled his diaper with blood. This is very concerning, but not unheard of. They feel it is the mucositis that got irritated; kind of like ripping off a scab. A vessel in the GI tract is bleeding. The other theory is he may have a bleeding ulcer. He vomitted two more times with blood so far, and has had two diapers with a small amount of blood.
Right away after the fist episode, they gave Zachary platelets. His counts went up to 104,000. The hope is that it will clot off the bleeding area. Since he lost a bit of blood, his hemoglobin fell to 8.6. They transfused him with packed red cells to compensate for the loss. They gave him Prilosec to protect the lining of his stomach in case of an ulcer. He has a small rash now, so we have to watch close for a n allergy. They are consantly drawing blood to keep a close eye on Zackie. His clotting times are good, so his body should be able to handle this. They plan to give more platelets during the night to support the healing effort.
Through all this, Zachary is as happy as a clam. He feels worlds better since he was able to expel all that blood. He must have had awful cramps. He had been very quiet all day, but is playing and singing now. You wouldn't know he was sick and requiring one on one care. Today he made me very proud...he tolerated wearing a mask. We walked the hallway with me restraining his arms at first. Slowly, I let go of his hands and he kept the mask on. Finally, I let him down, and he walked independently up and down the hallway. That';s my boy!
I'll updat more tomorrow.
Dana
Saturday, October 20, 2001 at 11:06 PM (CDT)
DAY +16. I had a great time at home with Kyle, even if it was only for one night. I got back to the hospital in the late afternoon. Zachary was kind of tired and watching videos. He had been throwing up alot from the resolving mucositis. His blood pressures had been holding steady with no medication. They started to give him his antiemetic meds again to make him more comfortable.
Zachary's counts are still up. His ANC was around 350. He still hasn't required platelets, but will probably tomorrow. He seems to be getting back his strength. When he got unhooked for his bath, he walked. He was kind of shakey, but determined. Zackie amazes me everyday. He enjoyed his bath, got his dressing changed, and watched Blue's Clues.
Here's the bad stuff...In the evening, Zachary's blood pressure began to trend upward. they gave him procardia, then his blood pressure dropped low . Oh boy, was that scary. He had a IV bolus which finally brought it back up. Now his blood pressure is perfect and he is resting quietly.
And the good stuff...Zachary ate a half of a box of Cheerios! I was thrilled. He may not need that NG tube after all. We forced a mask on Zachary and took him for a walk. He hated the mask but loved the walk. Maybe the next time we try it he will be more willing.
Dana
Thursday, October 18, 2001 at 10:44 PM (CDT)
DAY +14. On the whole, Zachary's day went very well. His blood pressures remained with in normal limits until 9am, with out any medication. At 9, they gave him some procardia, and he responded well. During the day, they added a longer acting blood pressure med. All day his blood pressures were great. He had no hives or itching all day. We were sure we had it pegged; a latex allergy. They stopped the lipid also just in case. I really thought this was over.
So if you know Zackie, it is never over. Tonight was no different than the previous 3. At 10:30 pm, the same stuff happened. This time the reaction was easier to manage. He didn't require epi, just his benadryl a little early. So the culprit is...drum roll please...zantac. He had that added to his hyper al. At this point we are fairly certain, but you never know. If tomorrow he is fine, our answer will be definate.
Today Zachary was very weak and tired. His body has been through such a battle for the past couple of days. He had me a bit nervous tonight when he wouldn't stand, walk, or even sit up straight. So the nurse in me called in the fellow and discussed doing a battery of tests to rule out any crazy stuff. Everything came back normal, so hopefully when he is feeling better tomorrow he will be on his feet more. I did request that physical therapy work with him tomorrow. We know all his muscles and nerves are intact, just weak.
So to save the best news for last...Zachary's white count was up to 1.3. His ANC was 556! Things are improving fast. I can't believe it. Even better, when they ran a CBC tonight, the white count was up to 1.7. He will be off of strict precautions tomorrow. If he is willing to wear a mask, he will be allowed out of his room. This will be a battle. He even gets mad if I wear a mask. To me this is a tiny battle in a war we are winning.
Dana
Wednesday, October 17, 2001 at 11:32 PM (CDT)
DAY +13. We would love to see everyday be perfect, but we were destin to have a bad day. Actually our bad day started last night. At about 11pm he began to have an allergic reation to something. It is hard to pin point which one; he is on so many meds. He began to have hives and was very uncomfortable. He started to have some respiratory distress. They gave him steroids and benadryl. That only took the edge off, so they had to give him epinepherine. He responded beautifully. Unfortunately the cycle continued and the allergic responses kept coming and going, manifesting in different ways.
Mostly, Zachary remained very comfortable despite the horrible reddness and hives all over him. The doctors are aggressively trying to find the med at fault. As of now, we haven't found it, but there are 4 more drugs to test, or eliminate. As if the allergy wasn't enough, he began to have VERY high blood pressures. Luckily, the doctors were right on top of every problem. They gave him hydrolazine, that didn't work. After that, they gave him procardia, which took care of the problem. Our day was filled with consant medical intervention.
At 11pm tonight, Zachary had a repeat of last night. His reaction was similar and he required epinepherine. It worked like a charm. Right now he is sleeping soundly. On a good note, his pressures have been stable. So now we watch and search for the culprit. Please know he is safe and in good hands. He still is running and playing like our mighty Zackie.
Dana
Tuesday, October 16, 2001 at 11:47 AM (CDT)
DAY +12. Sorry I didn't post yesterday, I was too tired. Things are going great here, better than we ever expected. Zachary's white count is up to 1.1, His ANC is 176! Those cells are multiplying left and right. He will get platelets today, either Peg or Ann Marie's. He is starting to eat a little bit ( sorry Marie, he can't have any outside food, but I can).
Zachary is very active and loving. The same little boy we all know. We hope to be home by next week. His weight is going back to normal. We hope to be off of most of his meds soon. Our biggest task is to get Zackie to wear a mask, he prefers to use them as hats.
Dana
Sunday, October 14, 2001 at 10:25 PM (CDT)
DAY +10. What a great day. Zachary continues to amaze us all. Would you believe it...50 cells counted today. His white count is up to 0.6, doubled from yesterday. His platelet count is at 47,000 from his last transfusion. Might I say, only directed donor platelets have been used. A special thanks to a special man in Phillie's E&Y office, I wont use your name, but you know who you are. Peg ( E&Y) and her friend Ann Marie are our next platelets to be used, I love you guys!
Zachary woke up today at about 8:30am and didn't take his nap until 4:30pm. We were happy when he would be alert for 1 full hour, but he by far broke that record. I needed a nap after today. He needed very little pain medication today. Our hope is to tomorrow cycle down the hyper al and lipids, stop some of the nausea meds (use them only when needed), and wean him from the pain meds. One day at a time, no rushing...he will lead the way. Our big concern today is he is losing weight. It is probably from the non stop loose stool. He has lost 1 pound in 2 days; that is a lot for a little guy.
Now Zachary is sleeping quietly. No fevers, no vomitting, and making cells...I would call it a great day!
Dana
Saturday, October 13, 2001 at 11:21 PM (CDT)
DAY +9. I am so glad this web page uses central time, it is after midnight here and I am finally getting a chance to update. Now dont think I have been busy with Zachary, he has been sleeping and I have been yapping with other moms. Zachary is doing great. As I said yesterday, there were 2 cells on the slide, one was a monocyte...now today there were 20 cells. I cant believe it. This is happening faster than anyone anticipated. But you know Zackie...GO, GO, GO!!!
Zachary still slept a lot of the day. When he was awake, he was a wild man. I can hardly keep up. It seems as though he has lost all the hair he will lose. He still has a full covering, just very well thinned. All in all, he still has more hair than Grandpa. He looks really cute (Zachary, that is).He was talking up a storm today. He even took a nap with me. He has been very stand-off-ish this hospital stay.
I really fell Zachary is healing from the damage medicine created (for good reason), and from this cancer that has been invading his body. Zachary is stronger than all that. Nothing can break his spirit!
Dana
Friday, October 12, 2001 at 09:01 PM (CDT)
DAY +8. I am so happy to be back with Zachary. I did, though, enjoy the special time I spent with Kyle. The first night home I wasn't able to sleep. I felt a little out of control that I didn't know what was going on every second. So I filled my days with Kyle and friends, and of course called Stuart ten million times. I got to get to know baby Emily and cuddle with baby Abigail ( along with chatting with their mommies, Lisa and Kim, respectively). I felt so out of my element at home that when Kyle, my healthy son, opened his mouth, I peaked in for mouth sores! (Boy did I need a break!!!!)
I got to the hospital around 3:30pm and Zachary was sleeping. His slumber was disturbed briefly for his yucky meds. I took him on to the chair with me to cuddle, then instantly he was asleep again. I asked the doctor to up his morphine, he was on a very low dose, because he seemed to be uncomfortable. Actually, they changed the med to dilaudid bacause Zackie was itching from the morphine. He doesn't throw up as much anymore, so I know things are improving.
So now the best news I saved for last; Zachary's white count was .3. There was a monocyte in the differential which is the first white cell made by bone marrow. So are we engraphing?, we will get a better idea in a couple of days. When his white count is a bit higher, they will test the cells by DNA fingerprinting to see if they are Kyle's. Keep your fingers crossed and continue to pray.
Thank you for all the cards and postcards. Zachary loves to get mail. We proudly display them on his wall so the staff sees how big of a fan club he has. His address is at the bottom of the page.
We loved spending time today with Ellen and Paul (thanks for dinner guys!), we sure missed you guys. My little buddy, Alexander, from down the hall, may be getting a second chance at life. Please add him to your prayers, he is only 5 months old but the strongest little man. We really miss the princess of 3east, Sami. Life here just isn't the same with out her, but we are glad she is home.
Dana
Thursday, October 11, 2001 at 04:38 PM (CDT)
Well it is my turn to make a journal entry. Dana is enjoying herself at home with Kyle. In fact she has spent a majority of the day with two of her closest friends (as she says it is boring being alone at home).
Zack has been amazing today. Normally he doesn't want to be bothered in the morning, but today he was very social and active. At one point I needed to move the rolling table and IV pole away from the crib since he was pushing things off of the table and pulling at the IV bags.
We sat together and watched TV and read "Tumble Bumble." He still is not eating, but he likes to play with his pretzels and if we are lucky he may suck the salt off of a couple.
His hair has thined, but there still is quite a bit up there (Sorry Marie - so far he has not mimicked my male pattern baldness).
It is still early and he is sleeping and saving up his strength for the hour off of the IV pumps at 7PM.
Zack received platelets last night. Thank you EY-Philly - your donation support has been unbelievable. Thank you in advance to Peg (hi boss) and Annemarie (see you tomorrow).
Zack was scheduled to have a blood transfusion earlier today, but it looks like it will occur after his bath tonight.
For those of you technically proficient here are his numbers as of this morning (day +7):
- White Blood Cells: .1
- Hemoglobin: 7.9
- Platelets: 49,000
Thank you all for your continuing support.
Stuart
Tuesday, October 09, 2001 at 08:46 PM (CDT)
DAY +5. Zachary was a wild man today. I don't know where his energy comes from. One day he is too weak to play, and the next he is the energizer bunny. The physical therapist was amazed at his strength, I think we all are. Daddy came to spend time with us in the afternoon. Zachary wouldn't let Stuart out of his sight.
Zachary's hair is falling out in clumps. He hasn't even noticed. The only thing he hates is when it falls in his face. He still looks as cute as ever, just with a little less hair. In the evening he began having a fever. We knew this would happen. It happened everytime his counts were low. Tonight, they cultured the broviac lines and will start some antibiotics just in case.
Tomorrow I will go home to be with Kyle. I can't wait. Stuart will hang here with Zachary until Friday.
Dana
Monday, October 08, 2001 at 07:52 PM (CDT)
DAY +4. Zachary slept the day away. In fact, so did I! He is starting to have more pain from the mucositis. He has one sore on his tongue and probably alot more that we are unable to see through his GI tract. He is having some blood in his stool and vomit. This is all to be expected. They started him on continous morphine at a basal rate. If he has pain still, I can hit a button that will administer a small bolus dose. So far, he is comfortable with the basal dose.
The good thing is Zachary actually took a few bites of food today. It wasn't much, but after not eating for so long, a little is a lot. He didn't feel much like playing today. He did enjoy his bath. His hair is slowly shedding. Not in clumps, but just thinning. I imagine in a few more days it will be gone. After holding him, my shirt looks as though I had been cuddling with a cat. He is too young to care about the hair loss, so for us this is no big deal.
I hope tomorrow Zackie will have more energy. It is important now that he rests as much as he can. His body is very hard at work, like a little factory. Check out the transplant pictures on the photo page and sign the guest book. We love getting new messages it is our daily perk. Thank you to all the people who have run to Zachary's rescue by donating platelets. Even those of you, which is many, that were deferred, the thought is just as good as the donation.
Dana
Saturday, October 06, 2001 at 10:24 PM (CDT)
DAY +2. Zachary is doing great. He really loved the one on one time with daddy. I came back in the afternoon and Zachary stood up to greet me. That was the first time he stood on his own all day. He had a bad night with vomitting last night. He sure did keep his daddy busy. During the day he was very sluggish.
Soon after I got back, the physical therapist made a visit at our request. We were both concerned about how weak Zachary is. We knew this would happen, but we want to keep up on therapy so his body stays in shape. She assessed him and showed us exercises we can do with him. He really didn't want any part of PT, he just wants to stay in bed.
Now for all of you that know the power of Zackie; after the therapist left, he was running around the room!!! The nurse was amazed. A nice warm bath just changes everything for him. He played with all his toys. Weakness, what weakness????
Zachary will receive his first bag of platelets tonight. His count is on the boarder, but he did have some blood in his stool today. He is on lots of meds to control the vomitting. They decided to try ativan again, but half the dose he had previously ( he had a loopy reaction last time). He tolerated it very well and it really helped his nausea. Now he is fast asleep.
Mommy got to enjoy some time with daddy. We haven't sat down together in a while. We had dinner together then cuddled up together to watch a movie. Stuart is staying over night at the Ronald McDonald house. We get to spend tomorrow together too!
Kyle is visiting with Aunt Laura and Uncle Scott. He loves to play with cousin Ryan. His boo-boos are healing well. Hardly a bruise at all. He says it doesnt hurt. I loved being home with him. We cuddled all night last night, it was the best. I look forward to being with him again.
Congrats to Lisa and Bob on the birth of their daughter Emily. She is beautiful!!!
Dana
Thursday, October 04, 2001 at 09:01 PM (CDT)
DAY 0!!!!! I can't believe the day has come and gone. Oh boy! To start, Zachary had a uneventful night. Aside from throwing up some mucous, he slept well. I wish I had slept that well. Zachary is still holding his spirit. Even though he really doesn't feel well, he strives for normal and succeeds. He amazes me everyday and gives me all the strength I need to care for him.
Kyle arrived at CHOP around 7am. He refused to wear the hospital pajamas, so went into the OR in his regular clothes. He was given versed in preop. He was quite the silly drunk! He went very easily into the OR with his nurse. And then we waited. The harvest started at 8:45am and didn't finish until after 10am. I'm sure the amount of gray hair I had quadrupled. He didn't stay in The PACU for long. I was so thrilled to see he was ok.
We met Kyle in the hallway on his way to his room. He looked at Stuart and I, then at Uncle Scott. His first words were "Hi Uncle Scott, look what they gave me", pointing to his heplock where his IV was. He sat up on the stretcher and enjoyed his ride to his room. There he was greeted with tons of presents and hugs and kisses. Right away he was up and about, eating, drinking and playing. Never once did he complain. He even chose to eat his lunch with the rest of the family in the cafeteria. He is amazing. Boy Stuart, we sure made some super tough kids!
The transplant went beautifully. They said the stem cell load was way above what is required for transplant. I marveled at this bag that looked like blood. This was Zachary's chance, his life in a bag. The infusion went well, no side effects. Zachary felt pretty good, just the vomitting from mococytis caused by the lining in his upper GI to breakdown from the chemo.His daddy is staying with him tonight and I am home with Kyle.
Kyle will need to take some iron to boost up his hemoglobin count, but is otherwise fine. He took motrin at 6pm and is sound asleep now. Zachary is asleep to and I hope Staurt is getting the much needed rest he deserves. Today was long, but a day we will never forget. My babies are ok, so now I can sleep knowing that marrow will find it's way and make Kyle powered cells.
Soon I will add the pictures from today to the web site.
Dana
Wednesday, October 03, 2001 at 08:19 PM (CDT)
DAY -1. Zachary had a great day. Completely uneventful. He only threw up when he was forced to take his antibiotic that taste like gasoline. He ate some cheerios and took some sips of juice. All in all, he napped a lot.
Tomorrow is the big day. Kyle has to be here at 7am. The harvest is scheduled for 8:30am. It should take about a half hour. Zachary will probably start to receive the marrow before Kyle is in his room. Of course we are all a bit nervous and on edge. I cant wait until tomorrow is over. I will go home with Kyle and let Stuart stay with Zachary until Saturday. I look forward to snuggling in bed with Kyle.
Dana
Tuesday, October 02, 2001 at 09:25 PM (CDT)
DAY -2. Today was a "barfy" day. Actually he threw up all night and into the afternoon. I guess after 7 days of chemo, it is bound to get the best of you. Luckily, mighty Zachary was running and playing by late afternoon. He was able to spend time with his daddy. You should have seen how he lit up when Stuart got here.
Today they started Zachary on Hyperal and Lipid therapy. Essentially, he will be given all of his nutrition through his broviac. He really hasn't been eating well and has lost 2 pounds. I don't blame him, I don't think I could eat if it were me. Now he is fast asleep, so I shall do the same.
Dana
Monday, October 01, 2001 at 03:24 PM (CDT)
DAY -3. Ok, for all of you that I have completely confused...transplant day is Zachary's "second" or "other" birthday. Kind of a rebirth. His actual 2nd birthday is November 3rd. He will be lucky to have 2 special birthdays. (ok uncle Jim? LOL).
Today went pretty well. Zachary ate some of his peanut butter and jelly sandwich and some sips of juice. He is very tired and weak. His counts are dropping rapidly, which is what we are expecting to happen. His white count is down to 1.7 and his ANC went from 3476 to 1054. By tomorrow he will be on strict precautions, but he has pretty much been following the precautions right from the start. His platelet count is down to 49 and his hemoglobin is down to 9.1. He will definately be requiring transfusion in the next couple of days.
It is definately getting harder to give Zachary his oral medications. It takes 2 nurses to give them. Today, Zachary got them back by throwing up on them. He is very talented. They still managed to give the rest of the meds, I guess they are used to being barfed on! Now he is resting and watching elmo, his hero.
Dana
Sunday, September 30, 2001 at 09:07 PM (CDT)
DAY -4. I was really sure today would be awful. Guess what...Zachary cruised right through the day. He is amazing. Aunt Laura came to spend the day with us. I do believe Laura was more nauseus than Zackie. He even ate some cheerios and pretzels and had a couple of swigs of his favorite V8 splash.
Zachary wasn't as sleepy today, but he definately preferred to stay in the crib. By about 6pm he was ready to be social. He was VERY giddy from all his meds, a real ham. Tomorrow in the morning they will take out the foley cathetar. Zackie will get back to the business of playing. He gets another chemo dose tomorrow, but that one tends to be well tolerated.
Zachary's counts are falling. His white count went from 12.5 yesterday to 5.4 today. I imagine in the next few days he will be on strict precautions. Thursday is transplant day, Zachary's second birthday (with out all the labor pains though!). Keep praying that Zachary will continue to do as well.
Dana
Saturday, September 29, 2001 at 09:59 PM (CDT)
DAY -5. Today went much better than anyone expected. At about 8:30am, they gave him Versed and inserted the foley catheter. Zachary was really good, loopy, but good. They premedicated him with all kinds of antiemetics and gave him the cytoxin at 10:00am. He slept most of the day. When he was awake, he was kind of agitated and preferred to be left alone.
Would you believe, he didn't even throw up once. I think my sister, Laura, who is 11 weeks pregnant, threw up more! Zachary's diet today consisted of one purple fruit loop. I am so proud of him. I know he feels awful, but he never complains. He spent the day sleeping and watching videos. He sat with me on the chair for a while reading. The only problem he is having is his face and arms are flushed, probably from the phenergan. The nurse will watch him closely to make sure all is well.
Poor Stuart is feeling under the weather, but hopefully he can come here on Tuesday. We miss you daddy!!!!I better get some sleep. My light had been stuck on the ON position. Engineering just came to fix it...well, take out the bulb. Hopefully tomorrow will go just as well with Zachary.
Dana
Friday, September 28, 2001 at 09:25 PM (CDT)
Day -6. Zachary is doing pretty well today. I must start by telling you what he ate. He started his day with 7...yes 7...slices of bacon (fat trimmed a bit), used the french toast stick to eat the syrup, and some cheerios. Lunch he skipped, too tired. Dinner he ate a few pieces of chicken nuggets and finished ALL his ketchup, using the fries as the utensil. All this YUMMY food was topped off by a box of fruit loops. Makes you want to run right out now and order the same eh?
Overall Zachary feels good. He is a bit tired, but still runs around like a nut. He got to continue torturing the lady doing his neuropsych testing. I'm sure SHE will sleep well tonight. Zachary's biggest issue is butt breakdown. Yep you read right, a BAD diaper rash. I feel horrible for him. Each diaper change is torture for him. They gave us lots of ointments, so hopefully it will clear. He takes lots of antibiotics to clean out his GI tract of all bacteria, so diarrhea is the result.
Tomorrow Zachary will start the cytoxin, the "barfy" med. He will be well medicated to help him. By next week all his hair will be gone. On the bright side, at least baths will be shorter. Zachary is a real trooper.
Dana
Thursday, September 27, 2001 at 05:04 PM (CDT)
DAY -7. Not to much change today. Zachary's counts are slowly dropping. For once I can say that it is a good thing. He is still just as active as ever, even more so today. Oh boy do I need a nap!!!! He was able to leave the room for a short while to do a neuropsych evaluation. That went well...NOT! He was a complete monster and would not cooperate at all.
When Zachary got back to his room he was greeted by his Grandma, Grandpa, and Aunt Jill. I left to have lunch with my dad and Zachary really tested out grandma's patience. Kudos to you guys for surviving watching him! We certainly do enjoy watching all his energy. Daddy came to spend the afternoon with us, I think he will need a nap too.
In the afternoon Zackie was evaluated by physical therapy. Needless to say, there were no problems in that department. He even got to draw on the walls, well he wasn't really allowed to, but he did it any way ( thank god for washable markers!).
We are now waiting for Zachary's meds to finish so he can hop into the tub. After bath time he gets his chemo along with some other yucky tasting meds, then off to bed he goes. And for those of you wondering, yes he still has his hair.
Dana
Wednesday, September 26, 2001 at 12:17 PM (CDT)
DAY -8. Zachary is doing very well so far. He started his chemotherapy at 2am Tuesday morning. The chemo he takes now for 4 days is given by mouth. They add cherry syrup to help with the taste. We thought he would definately require a nasogastric tube to ensure accurate doses of the meds, but Zackie proved us wrong. He fights us a bit with the chemo and one of the antibiotics, but takes every drop. no exta "tubies" for him.
We were happy to see that Zachary has regained all his weight he had lost during the conditioning chemo treatments. His counts are great. He started this chemo with a platelet count of 73,000. He will definately start needing platelet transfusions by next week.
All in all, things have been very uneventful here. Zachary has been sticking to his normal routine. Even with having to take his chemo at 2am, he sleeps very well. When he is not sleeping, he is out in the room playing with his MANY new toys that he has been sent. He is eating and drinking well. He has no nausea and vomitting yet, but the "barfy" chemo will start on the weekend.
Dana
Tuesday, September 25, 2001 at 05:33 AM (CDT)
Sorry that I am posting a day late, but yesterday was a very long day.
We arrived at the hospital at approximately 1:30PM, but did not get into out room until after 7PM. Unfortunately, we had to wait for the original occupant to leave and for the room to be prepared for Zack.
CHOP was very good about the situation - they lent us a stroller to take him for a long walk outside and they even allowed us to use another room for the last two hours of the wait.
Zack ate and drank very well yesterday prior to having his IV set up. As usual, he was a ball of energy (he ran up and down the floor for hours).
Please note that I have placed the room and phone number information on the front page of the site under hospital information.
Please remember that if you would like to send something to Zack it should be limited to a card since he is not allowed to have stuffed animals or balloons in his room.
Stuart
Thursday, September 13, 2001 at 06:18 PM (CDT)
Another delay. Zachary's nurse called to tell us that he will not be admitted until Sept 24th. This means that the big transplant day will be on Oct 4th. The delay is because they decided to give him 2 days of rest between the end of chemo and transplant. This would put transplant on a Saturday, and we all know that woulnd't work. There was also a problem with the lab only doing certain lab work that he needs on certain days.
Either way, we are certain of the new date. Zachary is doing very well. No one would ever know by looking at him that he is sick. I added new recent pictures to the photo page, so check it out. We cant wait to get started, but for now we are enjoying being home as a family. Especially since Tuesday's tragedy, I feel safer at home. Our hearts and prayers go out to anyone who was hurt by this cowardly act of violance. We were happy to have Grandpa, Aunt Laura, and Uncle Scott back home to New Jersey. You guys had us very scared!
I am touched by the tons of responses I received about donating platelets to Zachary. We thank you from the bottom of our hearts! Anyone else interested feel free to email me at dmdoc@msn.com. I will send you information. If you do not live near CHOP, please consider donating to your local apheresis center for others who are in need. In addition, for those of you able to assist in donating blood to New York City or DC, please do so. I wish there was more we can do as Americans to help those in need and who have lost so much.
Dana
Friday, September 07, 2001 at 10:52 PM (CDT)
So here's the scoop...Zachary will be admitted on Sept 19th for conditioning for transplant. So what does that mean???...NO TBI (RADIATION) FOR ZACKIE!!!!! The first day will be for hydration, the next 7 for intensive chemotherapy, the 9th for rest, and Sept 28th will be the big day.
The decision to omit TBI was based on the European studies that show a perfect related bone marrow match does not require it. We are thrilled with that decision. Unfortunately, we all know the chemo will be no walk in the park. There are many scary risks, too many to go into, but they plan to be on top of them.
Zachary's platelet count is down to 89,000 (from 269,000 last week). I hate to see that, but we were expecting it. His white count was normal. He feels great and looks great too.
So now we prepare and make the best of these next couple of weeks. Our lives will change drastically, but we have been riding this rollercoaster for a while now, but this is the BIG hill.
If anyone is interested in donating platelets for Zachary please email me. You need to be Apos, Aneg, ABpos or ABneg. This would require a trip to Phillie, 4 hours of your time (for the first visit), and a coupleof minor restricions. Let me know this week and I will email you with more info. For the rest of you with other blood types, CHOP could use platelets, other children would benefit. DMDOC@MSN.com
Dana
Thursday, August 30, 2001 at 07:31 PM (CDT)
Today was a very long day! It is bad enough that our day was scheduled with a million different appointments, but the delays made it worse. We started the day with a visit to the opthomologist, which Zachary didn't like one bit. They were quick to see him and dilate his eyes, but took forever after that. All was well in the eye department, the ok was given for transplant.
Our next stop was supposed to be CAT scan. They neglected to tell us that the machine was not running, and in fact, had not been operational in 3 days. They assured us it would be fixed and we were just delayed. Easy for them to say when they are not the one dealing with a hungry toddler that was with no food since yesterday! Our 10am appointment turned into a 3:30pm appointment. Oh boy was Zachary, and us, beside ourselves by then. Keep in mind Kyle was also with us all day too. Luckily Aunt Laura was with us to help.
We entertained ourselves during the delay with a visit to oncology. His blood counts were pretty good. No anemia, and a platelet count of 279, that is a record for Zachary! His white count is also climbing but we never expected the chemo to be a cure, but we hoped to see a normal, not too high, not too low count. Zachary is doing great, better than the doctors ever expected. People always say to us that his hair grew back beautifully, I love telling tham that it is his original hair.
We spoke for a while with the doctor and she plans to delay transplant for a little while. When she said that I just wanted to cry. Her reasons though were the best news. A new study out of England suggests that total body irradition is not necessary in the treament of JMML. She has a meeting set up to discuss skipping the TBI with Zachary. She knows she can take the time to research this because, as the doctor says, Zachary is as clinically stable as any child she has ever seen with JMML. We will definately know by next Friday and wont be delayed more that a couple of weeks. This would be a blessing because TBI can be very damaging when given to very young children.
The surgeon also had his hands on Zachary today and was very pleased with his recovery. He said the pathology report on the spleen showed a healthy spleen with very few tumor cells. Also while were up at oncology Kyle had his pre-donor (hero) workup. His blood counts were great, a platelet count of 346 may I add! He even urinated in a cup like a big boy. He was very brave for the blood stick, with the help of EMLA cream of course. Best of all, he even pooped in the potty at CHOP!
The CAT scan went well. Of course it took the maximum dose of pentobarbital to sedate Zachary (no surprise there!). We dont expect to hear anything unusual because this was just a pre-transplant test, not a search due to a problem. He took a while to wake up, he kept rolling over and yelling at us. He loves his sleep, me too! He woke up saying "eeww!", which was then followed by the smell. What class he has! He is doing very well recovering from sedation and will be back to normal by morning.
Dana
Wednesday, August 22, 2001 at 08:32 PM (CDT)
WE ARE HOME! Zachary got home around 5:30 pm. As the day progressed, he improved greatly. He had his last dose of morphine in the morning. He began to take tylenol with codeine. He does so much better on that. I guess the morphine made him too sleepy so he couldn't even enjoy the times when the pain was less.
Zachary never passed the poop test, but passed plenty of gas. He would stop walking, say "eeewww!", then keep going. We know he never eats well at the hospital, so heading home was for the best.
We will get a better idea of a date for transplant by next week, but he may be admitted as soon as Sept. 8th. There are many consults he needs to have prior, but the rest should be done next week (CAT scan and opthomalogist).Next week, Kyle will have his pre-transplant blood work, thank goodness for EMLA cream!
Well I am beat. I plan to get away tomorrow to visit my friend Kim's new daughter. Stuart will contend with the duo. CONGRATS TO KIM AND BRIAN ON THE DELIVERY OF THEIR 1ST CHILD ABIGAIL ELIZABETH!!!! I cant wait to meet her.
Dana
Tuesday, August 21, 2001 at 05:59 PM (CDT)
Zachary is doing pretty well today. His recovery is going slow, but as always, he is a trooper. He walked for the first time. It was hard for him but he did it. He certainly has a lot of pain, but he is well medicated with morphine and nubaine. He wont drink yet but the nausea has subsided.
Zachary mostly sleeps. Right now he is with Aunt Laura, Uncle Scott, and cousin Ryan. Kyle is at home with Grandma. Stuart will take Kyle over to Great Adventure in the evening. Hopefully, Zachary will go home tomorrow. They said he need to stay until he drinks, eats, and poops. Lots of hard work ahead!
I must thank Lynn and Joy for the cookies. You guys are too much. The best was Fed Ex delivered it, which made Kyle's day. By the way, Lynn stop screening your calls! (just kidding). I would post the phone number here but frankly I cant remember it :(
We look forward to coming home, but we will take it day by day. Thanks for all the wonderful messages in the guestbook. Zachary sure has a large fan club!
Dana
Monday, August 20, 2001 at 08:20 PM (CDT)
Zack had his surgery today. It was more of a success than we could have ever imagined.
His doctor was able to remove 60% of his spleen by laproscopic surgery with no complications. He also go his new broviac line today. The whole process took less than 2 and a half hours.
Zack is in some pain, but they have him on morphine and tylenol to help make him more comfortable. He has slept the majority of day since his surgery (good for him).
He should be home on Wednesday if all goes well.
Thank you Aunt Laura and cousin Ryan for keeping Kyle company today (especially since we know that you had different plans).
Stuart
Thursday, August 16, 2001 at 09:17 PM (CDT)
Here's the update...Zachary had a visit at CHOP today. We first went to talk with the surgeon that will do the partial splenectomy and put in the new Broviac. The plan is for surgery to be on Monday, sooner than we had expected. We will find out what time tomorrow.
Zachary's counts were GREAT today. His platelet count was 211, his hemoglobin was up to 11.4, and his white count was 1.5. The good news is that his ANC was 915, no longer neutripenic. These numbers are perfect for surgery. His white count will definately be way higher by Monday. They will draw counts prior to surgery to be sure.
Essentially, the doctor said he will start with a laproscope, look at the spleen, and decide how to procede from there. If the spleen is in bad shape from being enlarged for so long, he will do a total splenectomy through the scope. If not, he will do part of the partial by scope and finish through a small incision. Of course at any time if there is too much bleeding ( the spleen is a blood filled organ), he will take the whole thing out.
All in all, we wont know until it is over. We know Zachary will sail through this surgery as he does everything else. Keep him in your prayers. I will post his room phone number and about his surgery MOnday night if we can get to a computer.
(Good luck Julie on your surgery tomorrow, we will be thinking about you!)
Dana
Sunday, August 12, 2001 at 07:30 PM (CDT)
YEAH! We are home! Zachary was discharged at about 11am, not a minute too soon. He wasn't able to have his last dose of Vancomycin because the IV site was very red. Since this was his 2nd and last site, they decided to stop the antibiotics.
Removing the broviac was all that needed to be done to stop the infection. 24 hours after it was removed the site improved. Today, you can hardly see any infection. Zachary will take 5 days of antibiotics by mouth to just play it safe.
It feels real good to be home, even if itis just for a short time. Kyle and Zachary had a ball playing and driving their parents crazy. It was as if Zachary never left. Zackie's counts continue to rise but he is still susceptible to infection. His platelet count was a wopping 211!
Stuart and I reflected on this weekend and we decided to make sure the future weekend are better. To sum it up...our precious son lost his broviac line, we had to put our 6 year old cat to sleep, and our dog ate our couch. Hmm..things can only get better, eh? The bright side is Zachary is home safe and sound, that over rides any of the bad stuff by far.
Dana
Saturday, August 11, 2001 at 02:51 PM (CDT)
Our admission here at CHOP is coming to an end. They plan to discharge Zachary tomorrow...keep your finger's crossed! His counts continue to rise; he seems to feel better and better each day.
They removed the Broviac line, but not as we expected they would. While I was up here at the library writing the last update, the surgeon came to Zachary's room and just pulled it out. No sedation, no lidocaine, just one pull and it was out. Stuart was with him. He said they gave a little tug and Zachary cried so Stuart went to get the "B" (pacifier) and when he turned back around it was out. Both Zachary and Stuart were real troopers.
The IV team came and put in an IV and Zachary didn't even cry. The worst part is the blood work needs to be done by venipuncture and he is a hard stick. The good news is that he has only one more blood test before we leave tomorrow.
We will fully take advantage of being Broviacless for 2 weeks. Beach...here we come! We plan to make the most of the time we have at home before transplant. I better get back down stairs, Stuart is chasing both Kyle and Zachary up and down the halls!
Dana
Friday, August 10, 2001 at 03:30 PM (CDT)
The headline for today is...Bye broviac, bye! Despite 7 days of strong antibiotic therapy, the broviac site still remains infected. We are waiting for word as to when Zachary will go to the OR to have the boviac removed. The doctors will give him some concious sedation and local anesthetic. I'm sure he will feel much better with it out, I know we will!
Zachary will have the new broviac line placed when he has his splenectomy. At least they can do it at the same time with the same surgeon. His counts are continuing to come up. His platelet count is 113,000, his white count is .5 with a ANC of 120. His hemoglobin is holding steady at 9.8.
Stuart and Kyle are here spending the day. The boys have been having a blast. Unfortunately there hasn't been too much napping going on. I think Zachary is more than ready to get out of here. The plan is to be discharged on Sunday with some antibiotics by mouth and a topical ointment. Maybe if Zackie is lucky he will heal quick and be able to go swimming before the new line is placed.
I will update tomorrow with how the removal went. The phone number in the room is (215)590-6315.
Dana
Thursday, August 09, 2001 at 01:38 PM (CDT)
Yippie! I finally have access to a computer. Grandma, Grandpa, Aunt Jill, and Kyle came for a visit. Zachary is taking a benadryl induced nap. He is doing great. His counts are coming up...finally!
Zachary has a platelet count of...drum roll please...102! His white count is up to .4 and he actually has a + ANC, 48. The cellulitis is getting better each day. The doctors haven't decided when he will be discharged. I hope soon.
Zachary has been running around when he is not hooked up to his meds. He is having a grand ole time. He actually has tripled his vocabulary. He amazes me! The staff here loves him. Where else but CHOP do you see a doctor get down on the floor and play with a toddler. The people around here and the care he gets continues to astound me.
So the plan for Zackie is to have the partial splenectomy in about 2 weeks. Because it is probably going to be an open surgery, he will be in the hospital for about a week. He will go home for about 2 weeks then go to transplant.
Thanks for your continued support,
Dana
Tuesday, August 07, 2001 at 11:11 PM (CDT)
Well its been another restless night. I spent the night at CHOP yesterday with Zack and Dana. Unfortunately I had to sleep on one of those hospital chairs that spread out into a bed (it feels comfortable when you lay down, but you wake up tired and sore). I was up at 5:30AM and out to work which is a 1&1/2 hour drive from CHOP.
Zacky is looking better. His platelets improved slightly up to 34,000. His white count was pretty much the same. He is very good when the nurse are in (I think he is flirting with them), but he plays much the crab when alone with his mom and/or dad.
I left work at 5PM today and picked up Kyle from my sister-in-law (THANKS LAURA AND SCOTT - WITHOUT YOU I DON"T KNOW HOW WE COULD DO IT ALL). I immediately bought him some M&Ms at WaWa to try to smooth things over. It worked. I also let him play video games past his bed time (what can I say I feel sorry for him as well).
I will go to work for a half-day tomorrow and Kyle will be with his grandfather and grandmother (THANKS ARLENE AND SEYMOUR) to go swimming at their pool. I will pick him up at 3PM and take him to Great Adventure (he has been so patiently waiting for this trip). We will then go to see his "Momma" and "Zacky" at CHOP later.
Dana has been a real "Iron Woman" through this. She is alone at the hospital for much of the time and therefore has to wait for great lengths of time to do the things we all take for granted (i.e., shower, eating, using the facilities, etc.). Of course she does let me have it by reminding of this.
Well I gotta go because a thunder storm is going through the area.
Thanks to all for your encouraging words and support.
Stuart
Monday, August 06, 2001 at 03:36 PM (CDT)
We are still here at CHOP and may be for a while. The doctors have Zachary on antibiotics in hopes to clear up the cellulitis around his broviac site. They attempted to change the meds and replace Vancomycin with Oxycillin, but it only made things worse. Now he is back on the vanco and doing great. He doesn't have a fever anymore but they wont let him go until he recovers his white count. Since his white count was .2 today, we have a ways to go.
The good news is his platelet count nearly doubled from 17,000 to 30,000 in 24 hours with out a transfusion. This means that his bone marrow is recovering. He is being a really good boy. He spent the morning napping and the afternoon running around. His spirits are great.
Kyle got to go stay with Aunt Laura and Uncle Scott. They will go swimming tomorrow which totally thrills Kyle. He hasn't had much of a chance to do the normal little boy summer stuff.
I better get back to Zachary. A nurse's aide is watching him and I'm sure he is running her ragged. The phone number in his room is (215)590-6315. I hope I remembered it right, if not call the main number and ask for Zachary Doctor on 3 east room 3412.
Dana
Sunday, August 05, 2001 at 08:18 AM (CDT)
Here we are at CHOP, an unexpected visit. Zachary's broviac site was getting very red yesterday. He just wasn't acting right. He slept until 10:15am, actually I had to wake him up. He was ready for a nap by 12:30pm. I called to nurses in the oncology clinic and they suggested I bring him to the ER. He had no fever, but I wasn't about to wait for that.
They were so wonderful here in the ER. Zachary was put in a room and seen right away. They treat oncology patients with high priority due to the low white counts. They drew blood cultures from both lines and did a blood count. His platelets were the same at 20,000, his hemoglobin was down a bit to 8.8, and the white count was .2. They started antibiotics right away; vancomycin, cefazipam, and gentamycin. He wound up having a reaction to the vanco, which was easily fixed with benadryl. Now he will be premedicated prior to each dose.
We may be able to go home later in the evening, but I doubt it. This morning Zachary is doing great. The reddness is greatly decreased after only 2 doses of the antibiotics. I am still waiting on results of this mornings blood count, but I imagine it hasn't changed to much.
It was great to see Aunt Julie and Uncle Matt. Amanda is soooooooooo beautiful! They plan to stop by the hospital on their way back to Virginia, I can hardly wait. I wish we could have been home to visit with them. Stuart stayed home with them, he will also come later with Kyle.
Dana
Friday, August 03, 2001 at 04:54 PM (CDT)
Today Zachary had a blood count at MMC. His platelets were low, 19,000, but not low enough to warrant having a transfusion. They did however, put platelets on hold for Monday. The question is, will he make it through the weekend with out incident; we shall see. (of course he can have a transfusion over the weekend if need be).
His hemoglobin was not as high as they would of liked, but high enough to not worry. He is a bundle of energy, so we know he is ok. His white count is slowly, very slowly, rising. He doesn't have enough white cells to go out of the house; soon enough.
We entertain Zachary, and Kyle, the best we can. Aunt Laura and cousin Ryan spent the night. Grandma and Grandpa stopped by today just to cuddle and kiss their grandbabies (and to bring Kyle some chocolate milk and arts and crafts stuff). Aunt Julie, Uncle Matt, and cousin Amanda will spend the weekend. Gee are we surrounded by love or what! God knows we can use the company and relief!
So Zachary's next count will be on Monday, probably followed by a transfusion. We hope to avoid a hospital stay as we did last round for a fever. Keep praying because it is working!
Love,
Dana & Stuart
Tuesday, July 31, 2001 at 07:40 AM (CDT)
Here's the Monday update...on Tuesday. Zachary had a visit to MMC and we knew his counts would be low. He was one bruised up boy. Low he was, the platelet count was 4,000! The NP transfused him even prior to getting back the CBC results, she knows him. He tolerated the transfusion very well. The blood was already there waitng for him. They had put it on hold on Friday knowing he would need it.
Zachary's hemoglobin was 7.3. Even though we expected it to be low, he was not symptomatic at all. He totally amazes me. The gave him a red blood transfusion too. That one went just as well as the other. Of course I can't leave out his white count...0! (well actually it was .1 with a 0 ANC). Zackie is at the peak low time so none of this is unexpected.
I'm sorry to everyone who called yesterday to check up on Zachary. I had worked over night on Sunday, was at MMC from 10am to 5pm on Monday, slept for 2 hours, then had a class at my work at 10pm to 11pm. I was beat! Now I am well rested.
Dana
Friday, July 27, 2001 at 12:43 PM (CDT)
Today Zachary had a blood count at MMC. His counts were borderline low. The platelets were 26,000, hemoglobin was 8.9, and the white count was...what white count??? They will put both red cell and platelets on hold for transfusion for Monday.
Hopefully the weekend will be uneventful. We imagine Zachary wont be up to doing too much, so we will be home bodies for the time being. He looks great though, just a little tired and bruised up, it's par for the course.
Dana
Wednesday, July 25, 2001 at 11:50 AM (CDT)
Finally, we are home! Actually we got home yesterday but we were too tired to post. Zachary seems thrilled too be home. The boys went right back to their normal routine, laughing, playing, and fighting over toys. Zachary slept through the night. It must be nice to not be woken up by the nurses to take vital signs.
I gave Zachary a haircut, it looks really cute. For those who have seen him recently, his hair was way over grown. I didn't bother putting him through the torture of a haircut if it was going to fall out. Even though his hair is slowly falling out (very slowly), he deserved a cute little boy's haircut. Of course he didn't like it one bit and Kyle was happy it wasn't him for once.
All is back to normal, atleast as normal as things get around here. Zachary will go to MMC on Friday for a blood count, and then twice a week after that. Transfusions will be given as needed. He will follow up in 3 weeks with CHOP to make plans for his partial splenectomy.
Dana
Monday, July 23, 2001 at 11:46 AM (CDT)
Just a short update for those of you who are checking on a daily basis.
Zachary is doing well during this visit to CHOP. His fever broke a couple of days ago and has not returned. Even, his nausea has not been as severe as the last visit (for those of you related to me -- that means he has not attempted to blow chunks in a few days).
Unfortunately, Zack has decided he wants to look more like his dad and has started to shed his hair (goodbye curls).
Zack will come home Tuesday if everything continues as planned.
Stuart
Saturday, July 21, 2001 at 03:21 PM (CDT)
Last night was far better than the previous one. Zachary slept better but still had some vomiting. He also can't seem to shake the fever, but the doctor's are certain that it is a result of the ARA-C. Tylenol seems to do the trick to keeping the temp in check.
Zachary woke up in great spirits this morning. I guess that is the result of a better, not great, but better nights rest. He got to take a break from his IV pump for a little while to play in the playroom. Someone even asked me if Zachary was here visiting, that is how good he looks. The doctor's and nurses are amazed at him. HE still has each and every one of his curls. Even though I know they will eventually fall out, it is amazing to me they haven't yet.
I must apologize to anyone that has been trying to call us between noon and 4:00pm. I tried to lower the ringer and I guess I actually shut it off. My sister Laura has been with me all day and she happened to mention how odd it was that not even one person has called all day. Hmmm...so I did some investigating and low and behold the ringer was off. Sorry :(
I better get back down stairs. Zachary is due for his chemo soon. My sister is with him now while he naps. His grandma and grandpa are due here any minute too.
Dana
Friday, July 20, 2001 at 06:49 PM (CDT)
I know...it took me forever to post. Things have been really busy. We got to CHOP at 9:30am yesterday. We started with a blood count, which was great. The platelets were down to 120,000, half the amount from the week prior, but still ok. His white count was up and ready for chemo.
The nurses premedicated Zachary for nausea prior to starting chemo. He received his first chemo at theday hospital in outpatient oncology. Finally at 5:45pm we got a room on the inpatient oncology ward. And so our night began.
Zachary had the second chemo run from 6:00pm to 10:00pm. By 2:00am he began vomitting despite the many antinausea medications given. At 2:30am they decided to give him ativan to help him stop throwing up...what a disaster. He slept for a couple of hours and woke again at 5:00am vomiting. He also had a temp of 103, a common side effect of one of the chemo agents. The resident came in, they cultured his broviac line and started antibiotics just in case.
I called the doctor back in because Zachary seemed very agitated and was hallucinating; funny now, but terrifying then. The doctor concluded that he was having a reaction to the ativan given earlier. It was as if Zackie was in a whole different dimension, but returned to normal with in an hour or so.
So that was our night! He woke with the same high temp, broke it for most of the day, and it went back up this evening. Poor kid. Still he managed to run around in the playroom with out missing a beat.
We are in room 3404 on 3 east oncology. I would post the number but we are moving into the second bed tonight. This room is tiny and to be in that first bed is like being in a closet. Stuart is staying the night to help us; I'm thrilled to have the company! I'll post more tomorrow. Hopefully things will be better tonight.
Dana
Wednesday, July 18, 2001 at 01:41 PM (CDT)
Tomorrow Zachary will be admitted to CHOP for his second round of chemotherapy. Of course that is assuming his white count is ok, which I'm sure it will be. He is doing super. He runs and plays like any other toddler does. He is an inspiration!
I must say thank you to my super co workers in the newborn nursery, women's health unit, and labor and delivery at CMC for the wagon full of blankets to cuddle with, pajamas for both boys, videos and toys. You guys are too much. We sincerely appreciate all you have done. The cash donation will be used for gas, food, and other expenses. I love each and every one of you!
We are overwhelmed by the support and love we have received. The boys are spoiled rotten by all the new toys and stuff. The amount of emotional support and prayers have helped keep us sane through this very difficult time.
I'll post tomorrow with hospital info and an update.
Dana, Stuart, Kyle & Zachary
Thursday, July 12, 2001 at 08:38 PM (CDT)
Sorry it has taken me forever to do an update, especially since the plan has changed a bit. Zachary is still home. He wont have chemotherapy until next week. He went to MMC today for a routine blood count. We thought 169,000 platelets were good, hold onto your hats...today his count was 214,000!
We are still waiting for his white count to rise. It is coming up slowly. His ANC needs to be at 750, it was 250 today; that is up from 144 on monday. Needless to say our plans to go to Friendly's were put on hold. The new plan is for chemo and admission to CHOP next thursday. Zackie wont have anymore blood counts until then.
Hopefully this will be an uneventful week. Saturday is Stuart's birthday so I'm glad we will be celebrating it at home, together as a family.
Dana
Monday, July 09, 2001 at 02:03 PM (CDT)
I just couldn't wait to blurt out the good news...Zachary had a normal platelet count, 169,000! I cant believe it. Even his hemoglobin was normal for the first time. His white count has double since Friday. I think I will frame this lab report!
The nurse practitioner said that it is a good sign that his bone marrow regenerated so well. I love it...NORMAL counts! I can hardly believe it. I will savore this. The doctors were amazed at how great he looks. What a trooper! I will call in a little bit to get the differential of his white cell count. If that is good, off to Friendly's we go!
Now of course there has to be a downer in this post. Zachary will be admitted to CHOP on Thursday for a second round of chemo. We will make the most out of the rest of the week, because we all know those counts wont last.
Dana
Saturday, July 07, 2001 at 11:03 PM (CDT)
Today was the first glimpse of what we would consider a "normal" summer routine for our family.
1. Zack and Kyle destoyed the family room during the morning and continue to fight over who gets to play with certain toys (not that it doesn't happen on a regular basis regardless of Zack's condition).
2. After the kids' naps we decided to take a family trip to Great Adventure (Hooray!! We finally used our family passes). We figured even if Zack was confined to his stroller for the trip (except to ride some tame outdoor children's rides) it was better than him being confined indoors once again.
The trip was uneventful aside from the joy of seeing the boys having fun.
Well eveyone is sleeping so I guess I should too since Kyle will be up at the crack of dawn and I have to give Zachary his antibiotic does at 6AM.
Stuart
Friday, July 06, 2001 at 02:21 PM (CDT)
WAHOO! We are home, what a great feeling! The doctor discharged Zachary at 10:00am and we were out the door by 11:00am, not too anxious, eh? One more day in that hospital room and the two of us would have gone looney.
Zachary's blood counts are on the rise. It has been 4 days since the platelet transfusion and the counts are still going up; 96,000 today. His hemoglobin is remaining about the same and the white count is slowly rising. Now we get to be home for the weekend. No IVs, no blood tests, no chemotherapy; so for this weekend we are a normal family.
Zachary will go to the doctor on Monday morning to have a blood count. Once we get the results, the doctor at MMC will call the doctor at CHOP to set a plan for the next round of chemotherapy. And so we have come full circle and are ready for the next lap.
Dana
Thursday, July 05, 2001 at 04:19 PM (CDT)
Well I finally got access to the internet, boy have I been deprived! Zachary is doing well today. His counts are rising, but not quick enough to be able to go home today. His platelet has remained the same for 2 days now, that is GREAT news. His hemoglobin has actually gone up and is at an all time high. His white count is rising but he still doesn't have the ability to fight cooties, so here we remain.
Zachary was aloud to come off the IV pump for a while and ran around like a mad man. He still wont eat or drink much; his way of punishing us. Fortunately Aunt Laura came to the rescue with Sponge Bob Square Pants chewies (fruit chews of the Nickalodeon kind for those of you that dont speak the Doctor lingo).
We hope to be discharged tomorrow. Zackie will only get a couple of days home before his chemo at CHOP. I really missed having access to the web site, all your comments and support keeps me sane!
Dana
Wednesday, July 04, 2001 at 11:36 PM (CDT)
Well...I really don't know what to say. I am usually not at a loss of words, but I will give it a try.
Essentially, Zack is still at MMC. He looks good and is as active as usual. However, he is frustrated with being "cooped" up in his room. Unfortunately, at MMC he is in a normal pediatric ward rather than a oncology ward if he was at CHOP (i.e., there are kids on the ward with cooties). Therefore, with his white blood cell count so low he is confined to his room to protect his weakened immune system.
They decided not to take any additional blood counts today to give him a day off.
The GOOD NEWS is that he has not run a fever since Tuesday. The doctors have been hesitant to estimate his departure date, but Dana and I are optimistic that it will be later today.
The BAD NEWS is that since this was an unscheduled hospital visit he will probably go to CHOP within a day or two of his relaese from MMC for the next phase of his chemo.
Well, I've got to get some sleep since I know that Kyle will be in my room at the crack of dawn (as usual).
I will post later today with an update of his blood counts and his anticipated departure from MMC.
Stuart
Monday, July 02, 2001 at 10:30 PM (CDT)
Last night was a long night. Zack was up multiple times and we checked his temp each time, but it never rose to the level of admitting him to the hospital.
Zack went to Monmouth Medical Center for his blood counts again today. Unfortunately, his counts indicated that he would not be ready for his next round of chemo this Thurs. In fact, he needed a transfusion of hemoglobin and platelets.
During the platelet transfusion Zack finally ran that fever we were expecting last night and was admitted to the hospital. Well it looks like we are going to spend another holiday at MMC (first last Thanksgiving and next Independence Day).
They ran cultures on both broviac lines, the skin where the lines enter his chest and blood from his hand. While we are waiting for the results he will be administered antibiotics until it is determined whether it was a reaction to the platelets or an infection.
Dana is staying at the hospital tonight while I look after Kyle. I will drop off the hospital care package (clothes and misc items for both Dana and Zack) on my way to work tomorrow and join them in the early afternoon (PROBABLY LATE EVENING since I have to travel the Garden State Parkway and it is the day before a holiday).
***In case you did not notice we have posted an additional two pictures***
I will post again tomorrow with more information.
Stuart
Saturday, June 30, 2001 at 09:28 PM (CDT)
Oh boy, what a busy day. For once it was not busy from doctor's visits, blood tests or transfusions, just plain old fun! Today the boys had a visit for the day from their Nana and Pop-Pop ( they live in Florida so we don't get to see each other often). We took the boys over to the lake for "Manchester Day", boy was it hot out. We couldn't stay too long because of the heat. This was a big outing for Zackie, even though his over protective parents (with good reason) made him stay in the stroller. He didnt complain, he just sat back, observed, and sipped some cold lemonade.
Zachary is doing great, the blood count numbers are aweful still, but his spirits are high. His next appointment is on Monday. Please pray his counts are recovering. We held of on a blood transfusion on Friday because he was completely asympomatic. That's my boy!
I hope to but new pictures on the web site soon once Grandpa fixes them up for us. We are looking foward to a great week and Fourth of July. We must cram in as much fun as we can before our next admission.
Dana & Stuart
Tuesday, June 26, 2001 at 09:11 PM (CDT)
Tody's counts were not at all what I had expected. Zachary looks great, better than he has in a long time. Unfortunately his blood count didn't tell the same story. His platelet count was down to 15,000. He required another platelet transfusion. The doctor was concerned that the transfusions were not helping and that he was forming antibodies against the donor platelets. After the transfusion they ran another blood count and guess what...127,000!!!!
Zachary's white count is essentially zero. It was .3 with an ANC of 0 (the cells that protect him from bacteria). Ok Holli and Niki, tell me this just par for the course and I need not freak out, the doctors aren't. We really need to be extra careful to protect him from cooties.
Zachary is also qiuckly approaching counts low enough to require a red blood cell transfusion. Sorry, but no good news to report today other than Zachary is a real trooper. One would never know he was sick.
For all of you angels out there asking to donate blood to Zachary, hold on we may need you. Mostly for platelets. I'm collecting information about this because it is a complex issue. Just remember this is done through pheresis and is not the most comfortable thing. It also requires one to travel to central jersey and have a series of screening blood work.
Well it had been a long day. The kiddies are sleeping so Stuart and I shall have a bite to eat.
Dana & Stuart
Friday, June 22, 2001 at 09:03 PM (CDT)
Zachary is a bundle of energy today. He and Kyle did a great job at wearing me out. It is so great to watch him play. He seems so unaffected by the cancer and treatments. Kyle and Zachary can spend hours dancing to the Backstreet Boys "Larger than life". I really think that is our theme song. They run in circles and dance, laughing the whole time.
Kyle was such a big boy today. After we changed Zachary's dressing (which by the way went much better than the last time), Kyle flushed the line. He was so happy to help and did a great job. This is Kyle's way to help and he was so proud of himself. He said he was giving Zachary his chemo. He even talked today about giving bone marrow to "Zacka". He said he wants to sleep at CHOP, but wants to sleep in bed with Zachary. It breaks my heart when he says to me " Mommy I want my leukemia too.". It is hard to see thing through a 3 1/2 year old's eyes, but we are trying.
Now the boys are sleeping so I better hop into a bath and relax. Zachary will have another doctor's appointment on Tuesday. Here's to hoping we have an uneventful weekend with lots of dancing and laughing!
Dana and Stuart
Thursday, June 21, 2001 at 08:55 PM (CDT)
Zack has been home for two days now. He is having fun playing and is creating havoc as usual.
He had his scheduled visit at Monmouth Medical Center today to have blood counts taken.
Drumroll please ....
- His hemoglobin is holding steady (YEA!).
- His white count is dropping (UGH!), but it was expected after the first round of chemo.
- His platelets dropped 18,000 and he received a transfusion (he tolerated this intrusion into his personal space very well according to Dana).
- He lost 1 and 1/2 pounds, but as chubby as he is you just can't tell.
Overall he is happy and unaffected by all this (essentially he is one tough cookie).
Stuart and Dana
P.S. For those of you concerned, Mom, Dad and Kyle are doing well also.
Tuesday, June 19, 2001 at 11:03 PM (CDT)
Zack came home today! Hurray!!!
Of course he would not eat nor drink at CHOP, but they finally released him on the condition that if he did not eat or drink today that we would bring him back.
At home he proceeded to drink 5 oz of milk and take sips of his V-8 splash throughout the day. He ate only a small portion of his lunch, but he "CHOWED" at dinner.
He was active beyond belief today. He ran around the family room and kitchen and even started climbing on and off the couch.
Dana bathed him tonight and we decided that the dressing over the broviac line needed to be changed. What a disaster. Both Zacky, Dana and I survived the ordeal, but I can definitely say that it is a lot different changing the dressing on a "live" human being than on the rubber manequin at the hospital.
Zack is sleeping soundly now. He is happy to be home (so is Dana). Kyle was excited that his "Zacka" and Mommy were finally home.
Stuart and Dana
Monday, June 18, 2001 at 05:52 PM (CDT)
Hi everyone. I better type fast, the library will be closing in 5 minutes. Today was supposed to be Zachary's day of discharge. He woke up in the morning vomitting and wouldn't eat or drink. We waited all day and things never got better. He also required a platelet transfusion, but the rest of the counts were great. Tonight he will have some more IV infusions, but seems to be drinking more while Stuart is here. Needless to say, I am making Stuart stay the night! I hope we will be home tomorrow.
Dana
Sunday, June 17, 2001 at 12:06 PM (CDT)
HAPPY FATHER'S DAY! ( especially to a super daddy, Stuart, WE LOVE YOU!)
Last night went very well. We slept so well that when I woke up I noticed we got a new roommate. Zachary tolerated his chemo well, so far today he hasnt vomitted at all. He even had an oreo cookie for breakfast. I never imagined having junk for breakfast would make me so happy. He even started to drink some fluids on his own. YIPPIE! So in some ways we are making progress.
So the good news; I cant even palpate his spleen. The chemo is winning. The bad news; he will require a blood transfusion today for a low hemoglobin. He also has a nasty rash that comes and goes, but it makes him very uncomfortable. As always the medical staff is right on top of it to make him feel better.
Yesterday they let him off the IV pump to run around. At first he didnt understand that he was free. He kept going in his stroller. We had to carry him out of the room then put him down. He was very unsteady at first, but eventually got better. He got to play in the playroom and wander the hallways. After that, he got a visit from grandma and grandpa.
Today he will also get time off the pump after his transfusion. He will be discharged tomorrow, just as long as things go well.
I better go now. Kyle is with me and wants to check out the many cool gadgets that CHOP has for kids to play with. Happy father's day to all the hard working daddy's out there ,especially my father, Seymour my father in law Richard, my sweet brother in laws Scott and Matt, and the love of my life, Stuart ( I would never be able to make it through this without you).
Dana
Friday, June 15, 2001 at 04:45 PM (CDT)
Today is a much better day than yesterday. After his first round of chemo yesterday, Zachary spent the majority of the day vomiting. I felt so bad for him. As most of you know, Zachary is a GREAT eater, now it is a fight to get him to even eat cheerios. Luckily he has an IV, so we need not worry that he wont drink, not even from a bottle. The doctors and nurses have been great about giving him around the clock antiemetic drugs, and will keep adding and changing things until he is more comfortable.
Today Zachary only threw up once, but his appetite is greatly deminished. As for some good news; he is in great spirits today. He even made his daddy a father's day card (sh...dont tell Stuart!). He got to spend the day with his cousin Ryan. I wish you were all here to see him play with his new favorite toy, an emesis basin. I kid you not! He takes it to his mouth and says BLAH! Once in a while he uses it as a telephone. Only Zachary can make such humor out of this!
The good news is that the chemotherapy is working. Of course there is bad news too because of that. His white cell count has reduced from 19 to 5.6. His hemoglobin has fallen to 8.6 (close to needing a transfusion, though you wouldn't know it by looking at him). His platelet count has fallen from 79k to 38k ( also aproaching transfusion levels). Just remember, this means that the chemo is working and they continue to monitor his levels very closely.
I just want to let everyone know we are all doing ok, better than we expected. Stuart has managed to take care of all my needs as well as Kyle's while I tend to Zachary. My mom has done a super job at filling up Kyle's day, he must think he is on vacation. Zachary has been sleeping through the night (with the help of benadryl), so I have slept more than I ever have before! Kyle will come visit tomorrow and I have already planned for Child Life to do some play therapy with him.
Thank you for all your prayers and well wishes. We love you all!
Dana and Stuart
Wednesday, June 13, 2001 at 05:54 PM (CDT)
Zack was admitted to CHOP this morning at 8:15 AM. At 9:00 AM he went to day surgery to have his broviac tube installed.
Prior to the surgery the surgeon informed us of the small possibility that two complications could arise:
1. During the insertion Zack could start to bleed internally; and
2. The lung could be punctured requiring a valve to be placed to release the pressure created by the outside air.
As expected, the skill of the surgeon prevailed and no complications arose. Unfortunately, Zack had to wait in the recovery room for 3 hours while waiting for his room on the pediatric oncology ward. Since only one of us could be with him during the wait I was stuck in the waiting room (During this time I did get some much needed sleep.)
Zack was still groggy after the general anesthesia, but still practically jumped off of the strecher transporting him to his room when he saw me! What a great sight (of course it would have been terrible if the nurse had not stopped him and he fell to the floor).
As with all of the facilities at CHOP that we have encountered so far his room exceeded all expectations. The room is large and spacious and includes amenities such as a TV, VCR and Nintendo 64.
While both of us were allowed to stay in the room overnight I had to reluctantly leave Zack and Dana to return home to take care of our older son.
Chemotherapy was scheduled to start this afternoon, but I was not there so I will have to get Dana's account of it to update the journal tommorrow.
Stuart
Monday, June 11, 2001 at 09:26 PM (CDT)
Zachary was diagnosed with JMML (Juvenile Myelomoncytic Leukemia) approximately three weeks ago. It doesn't seem so long, but this has been seven months of testing for various symptoms. Even once he was diagnosed as clear of Leukemia (so we thought).
JMML is a rare childhood cancer and not clearly understood by the medical world. Conventional therapies (Chemotheraphy and Radiation) do not give chance of a cure since the Leukemia roots in the stem cells. The stem cells are the grandfather cells to all cells in the body. Bone marrow transplant (stem cell transplant) is Zachary's only chance of cure.
A parent has one in five thousand chance of being an acceptable bone marrow donor for a child while a sibling has a one in four chance of being acceptable.
So here we have waited for over a week for the phone call to tell us if our search was over. We could only hope that either Dana, Kyle (Zack's older brother) or I were acceptable matches.
Unless deep in thought with another project such as work, all of your thoughts are racing with the "what ifs". What if none of us are a match... What if there are no acceptable matches in the marrow registries... etc.
The call came today while none of us were home. Dana pulled the message off of the answering machine... Kyle was a match. Not only a match, but a perfect one at that (six out of six). The high - Zack had his donor. The low - Kyle would have to go through a painful procedure to save his brother's life.
Zack will be admitted to Childrens' Hospital of Philadelphia (CHOP) on Wednesday to have his Broviac line inserted and start the first round of chemotherapy. Luckily he goes into this with a platelet count of 73,000 which is safe for elective surgery.
For the first time in a week we hope to get a good night's sleep. We will add another entry on Thursday after his chemotherapy has begun.
Stuart and Dana
Saturday, June 09, 2001 at 03:51