Hello, My name is Melissa. My sons name is Charles Evan Vanden Burg Charlie for short. He was born on June 20th of 2004. When he was born he had bi- lateral club foot. He was put into casts by the time he was a month and a half and by the time he was 4 months he had a tendon release on both of his feet. He was in and out of casts till about 14 months old . He started walking with out casts but with braces on October 4th of 2005. In early November of 2005 he was seen at the WIC (Woman, Infant, and Children) office for a recheck appointment as his brother, Brendan (3 days old) was seen for a 1st time appointment. It was then that I found out that his hemoglobin (iron levels in the red blood) was very low. It was about 8.7. They suggested that we talk to our pediatrician and see what was going on as it was not good for his levels to be that low. It meant that he was severely anemic. Well, he saw my pediatrician and she suggested that we check it in a few months and to try to eat things with more iron in them like raisins. So he did. He got sick several times between November of 2005 and March of 2006. Just as he would start to feel better he would get sick all over again. He just could not shake it off. Between March and May, he was seen in the ER several times as well as the walk in clinic and his pediatricians office. Finally in the last week of May he was admitted to children's hospital 7th floor for testing. They wanted to see why his hemoglobin was at 5.9 and also figure out what was truly wrong with him.
It was a Wendsday night and as Charlie was sleeping the Dr. came in to talked to me. The Dr. told me that he had Neuroblastoma Cancer, stage 4. I was in utter shock. I could not think about him having cancer, nor did I want to. I was sat down and talked to about a course of treatment that would include chemo therapy and eventually a stem cell transplant as well as radiation and surgery. He had already been through so much with his feet I did not want to think of another string of doctors or clinic visits that we would have to go to. It made me cry that he had cancer but I also know he is a very strong willed kid and that he would get through this.
By Thursday morning he was in surgery to have his port put in and by Friday afternoon he was in the HOT (Hematology, Oncology, Transplant) Unit and receiving his first chemo. It was a long two weeks for every one. I barley saw my other son, which hurt me a lot. I felt like he was basically trapped in a room for 4 days strait but it was for his own well being. The nurses were very kind and made it feel as close to home as they could for us. He was happy and always smiling, even when he did not feel the greatest. I had to be strong for him as well as for Brendan, who now with Charlie's chemo treatments being started would be shuffled from place to place, but mostly stay at my moms.
During his second round of chemo I met what now I consider part of my support group, another family with a child of Neuroblastoma. Jerod and Charlie became good friends and I became good friends with his mom. We have been each others shoulders to cry on and ear to listen. We have since made calls to one another almost every time one of the boys gets sick. We have gotten together on more than one occasion to talk and be there for for each other while the boys feel like they are kids and not stuck in the hospital.
From June thru October he had a total of 6 rounds chemo, with a stem cell harvest after his 3rd round of chemo. He had tumor removed on October 5th of 2006, and several blood products (packed red blood cells and platelets) given to him through out his treatment. Most of the time during this period was spent on a day to day or hour to hour living basis, as we spent a lot of time in the hospital between chemo's as well for the actual chemo's that were scheduled approximately 3-4 weeks apart.
On November 17th 2006, he was admitted for his stem cell transplant and his high dose chemo. That was the toughest. He did not feel good hardly at all. He could not leave his room and he was sick all the time. During this time he reacted to a dose of platelets and he also reacted to his stem cells with rigors (bad shivers and shakes). He made it through his transplant and high dose chemo other wise basically well. We were able to come home for Christmas, which was a plus.
On the day after Christmas06' he started radiation, a 3 week process. He got really nauseated during this period and we were even hospitalized for about 4 days during the beginning of January 07'.
He started his oral chemo in febuary, All and all he was doing great and could not be happier. We were home and he got to play with his brother and spend time with the rest of the family. He had his N-G tube removed shortly after starting the oral chemo, and we had to see how well he would eat. Also, although he was still recieving some treatment, he was in a technical remission as there was not a detectable amount of cancer cells in his marrow or in his bones. The CT scans and all other tests were as normal as could be.
He had a pretty decent summer. We had his Make a Wish trip that we went on in June and we finished his oral chemo in the beginning of July. He made it to the state fair and to a few other things. He played inside and outside like nothing ever happened.
At the end of September I freaked out a bit with him not feeling good and although he only seemed to be having flu symptoms I worried that something had come back. We saw our pediatrtion and she asked Dr Kelly that our scans be moved up that were scheduled in mid october to as soon as they could be done. He agreed and they were done in the first week of October. Nothing found, all scans clear. I was estatic but it did not explain him feeling horible for so long.
As November 12th 2007 came we restarted bi-lateral club foot casting in preperation for a tendon surgury. He did awesome with the castings and was doing what they said could not be done while in the casts, walk in the casts.
On the 31st of November Charlie, casts and all, walked into my room. He said he didnt feel good and he smelled like he had dirty diaper. I got up and got the stuff to change him, then turned on the light. Immediately he started to scream at me to shut off the light that it hurt. I turned it off after changing him quick and he still was screaming make it stop it hurts. I figured bright light early in the morning, that was till he started puking and being very lathargic. He could not lift himself or even his head off my bed while puking. This had me very worried about what was going on. I got him into the car and headed to Milwaukee droping of Brendan by my dad and picking my aunt up on the way to have some one to sit by him in the car in case he puked or needed help of any kind. When we got up to the hospital they usherd us into a room right away. Within about an hour we had a ct completed and several drs in the room giving me news that I was not ready to handle. They found a massive hemerage on the brain. Whats worse was that it could possibly be a underlying tumor that they could not see because of how much blood was on the brain. They sent us strait to ICU to be monitored. After a few days of ICU we were moved to the surgical floor to begin therapy and run other tests to see if there was any sign of cancer or a tumor of any kind visible thru various scans and tests. We were hospitalized till the 11th of December and basically had no answers except that they could not see any signs of cancer, tumor, or basically where the blood was coming from either. Charlie was partly incapable of using his left side. Yet, we had no answers. The doc's said that they were going to watch the bleed via ct's and mri's and that they would run more tests as they could see fit but we were to go home with no idea as to what was going on.
So we went home and enjoyed the next 2 weeks. In between doctor visits and Christmas, we had a pretty good holiday. I was still a bit nervous about Charlie since we had no idea about what had caused the bleed.
Well we found out he has in 2008 had two brain tumors removed and several rounds of chemo radiation and maitnince chemo. we are in the process of waiting for our apeal to go thru to go to NYC sloan for treatment.
JAN 2010 - OK SO to update Charlie has been rediagnosed yet again a couple months back and is in the process of starting a new chemo this upcomming week or oral meds. he is stable and still in fighting condition. he is going back to school this week and is excited to be a part of this event this year again.
Charlie passed away on March 12, 2010.
