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Skyler's Page
Hi, this page is all about Skyler. He was diagnosed with Neuroblastoma stage 4 High Risk on Oct. 26th 2004. Just before his 3rd birthday. He had his 4th birthday on Dec. 29th 2005. He has currently had 6 cycles of chemotherapy, Surgery was on Thursday Feb. 24th '05. They successfuly removed the entire tumor, however there are still lymph nodes left. He underwent 4 straight days of chemotherapy and 2 days of rest. He had his autologous stem cell transplant on May 4th '05. He also caught the Adenovirus post transplant. He received two rounds of treatments for this virus and received a total of 18 doses of Cidovior. Skyler finished up his 12 Radation treatments in Sept. '05. He has been a real trooper through this whole ordeal. Skyler has always been a healthy, very active little boy. He's never been sick before this not even an earache. We noticed a large lump on his left side on a Thursday and by Sunday it had gotten larger and we knew it was something serious. I took him to the Dr. that Monday where she said that there was something def. wrong. So we went to St. Mary's hospital to have an ultrasound done. There was clearly a large tumor on his left kidney. Here we are 14 weeks pregnant(Sophie was born April 8th '05) scared to death and not expecting any of this. Skyler is still just as happy and active as little boys are. We were directed to take Skyler to MCV's ER. Where we were for 3 days intil they had a room upstairs for us. We were told he had Wilm's tumor and it would be removed the following day. Just minutes before they came to get him for surgery we were told there were some questionable lymph nodes. So plans were changed and they did a biopsy. After 8 looooong and unbearable days we were finally told he had Neuroblastoma stage 4 High Risk. He had a tumor the size of a softball in his adrenal gland on top of his left kidney. His bone marrow was completly infested, but he showed no signs of this. The first cycle of chemo hit him really hard. We were in the hospital for a month before he was finally released to go home. Once home it was strange being at home again because it didn't feel like home anymore. Our "Normal" was no longer. Skyler flew through his next 3 cycles of chemo quite well. His 5th cycle of chemo hit him very hard as well. He did great with his surgery, he was able to keep his kidney. He was out of the hospital in record time. The surgeons were truly amazed at his recovery. He had another cycle of chemo and had about 6 weeks of rest before his stem cell transplant. His transplant so far has been very successful. He did battle with the Adenovirus for atleast 6 weeks..maybe longer. But, he is very strong willed child!! He finished his 12 days of Radiation treatment in Sept. His baby vaccinations were wiped out due to his transplant and he's now in the process of getting those all over again. He's currently declared NED (no evidence of disease)He has almost finished his 6 months of Accutane. Skyler finished his protocol. Skyler relapsed June 16th 2007....Atleast we became aware of his relapse at that time. He had been acting not like himself and had a seizure in April where the Dr told us to take him home, watch him and give him tylenol if needed. He never once mentioned a head CT scan. Which I should have pushed for. He had an emergency surgery to have that tumor removed. It was located on his right parital lobe of his brain. The tumor was making too much pressure and luckily he was already impatient before his eye wouldn't dialuate. He was rushed to the OR where the surgery was a HUGE success and thankfully Skyler wasn't in the coma he had been in anymore. Skyler healed from his surgery then it was time for Skyler and I to pack our bags and head to NYC to become part of a clinical trial at Memorial Sloan-Kettering Cancer Center. We were there from early July '07 to late Dec. '07. He did chemotherapy and radiation. Then, he started 8H9 however due to the Adenovirus really did a hurting on his liver. Soooo, his little body wouldn't tolerate that study but for one dose. He then went on to 3F8 clinical study. He had a week of that and was HAMA positive for almost a year. He had to take an oral chemotherapy pill 42 days on and two weeks off for 5 cycles. His HAMA finally came down and back to NYC it was for us! His little body wouldn't tolerate that week of 3F8 either. So, we are blessed to say that Skyler is N.E.D. and off treatment as of December 2008. Journal Monday, December 15, 2008 10:54 AM CST Hey All! Sorry again for the lack in updating. I wrote all of this before and I lost it so here we go again. :) Skyler is finally HAMA negative. So, he and I went to NYC for a week of 3F8 Nov. 16th. Monday was an easy day! He got a lot of pain which is a good thing. He complained of his feet hurting that night which is a normal side effect from the drug. Nothing a few hot packs, lotion and mommy foot rubs can't cure. Tuesday was harder. He got a lot of pain. His blood pressure was elevated to 124/108. He had a nice gusher of a nose bleed. So, all I could do was hold, rock him while we tried to get it to stop. He was soo messed up from all the narcotics he didn't really know what was going on. He told me he loved me and I was the best mommy in the whole wide world. Talk about making me cry harder than I already was. Wednesday was HARD!! He got a lot of pain. Complained of pain in his hands during the infusion...which is a normal side effect but first for him. He complained his head hurt a lot. Which is not like him to complain so it really must have hurt him. His blood pressure was 154/121. I would ask him if he was okay and he'd say "I think so." Even with all the pain he was dealing with he was still soooo sweet and polite by saying "yes ma'am and no thank you." He also kept telling me I was the best mommy in the whole wide world. My response to that was "Because I'm your mommy Skyler and you're the best Skyler in the whole wide world." Talk about two full days of crying. He's an amazing little trooper like all the other children dealing with the "beast." Wednesday was the day the decision was made that Skyler wouldn't be back thursday or friday for 3F8. I could see the pattern in his blood pressure which scared me. His body was telling us that he couldn't handle the drug and I couldn't handle watching him suffer from it anymore. I spoke with his Dr and requested that we finish the 8H9 clinical study that we originally went to NYC for last year. His body was telling us he couldn't handle the 3F8. We only did one cycle out of two of the 8H9 cause his little body told us the same thing. We finished out that week with scans/tests....which we are still waiting on results from. Skyler woke me up Monday morning around 3am with a gusher of a nose bleed. We sat in the bathroom for hours trying to get it to stop. I'm rocking, kissing him and of course crying. He had complained he didn't feel good the night before and went to bed around 7pm...which isn't like him. He complained his stomach hurt and I just figured he had a little stomach bug. So, I took him to the pediatrician that following morning. His blood pressure was 140/90 and it stayed that way. So he's now on blood pressure medicine to hopefully maintain his blood pressure. He's such a strong trooper. I'm thankful for every day I have with him. Can't believe he'll be turning 7yrs old Dec. 29th. I say this every year but I honestly didn't think we'd be blessed to have him this long. I never thought we'd celebrate his 4th birthday moreless his 7th!! We are soooo thankful to have him after his four year battle with the "beast." Please pray for families and their precious babies who are dealing with the "beast." Please pray extra hard for the families who's babies have earned their wings and are flying high. Expecially here at the holidays!! I will update as soon as we get his scan/test results back and hopefully when we know what our next step is. Sophie is doing good. I finally gave her her very first haircut. She LOVES it! However, sadly most of the curls are gone. She's loving pre-school and has made a lot of friends. She's growing up so fast. Skyler has made a lot of friends in Kindergarden again. However, with his hearing loss he's having trouble in speach and a couple other areas. Otherwise, he's amazing as always!! Thank you for checking in on my little sunshine! He's my world and he gives me my strength. Also, wanted to note that he still has his loose screws and we are hoping they will work their way out like the other one did! My little man! :) Hospital Information:
Links: http://www.beebo.info/warriors.htm Neuroblastoma Warriors |
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E-mail Author: Skylermom01@Yahoo.com |
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