Saturday, January 31, 2015

Charlie V.

I wanted to share with you the story of an “angel” that I am honoring by having my head shaved for St. Baldrick’s. This is the personal account that Charlie V.’s mother gave of what he went through. These are her words.

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Hello, My name is Melissa. My son’s name is Charles Evan Vanden Burg. Charlie for short. He was born on June 20, 2004. When he was born he had bi-lateral clubfoot. He was put into casts when he was only a month and a half and by the time he was 4 months old, he had a tendon release on both of his feet. He was in and out of casts until he was 14 months old. He started walking without casts but with braces on October 4, 2005. 

In early November 2005 I found out that his hemoglobin (iron levels in the red blood) was very low. It was about 8.7 and we talked to our pediatrician and see what was going on. They determined that Charlie was severely anemic. Our pediatrician suggested that we check it in a few months and to have him eat things with more iron in them, like raisins. He got sick several times between November 2005 and March 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 at the pediatrician’s office. Finally, in the last week of May he was admitted to the Children's Hospital of Milwaukee for testing. They wanted to see why his hemoglobin was at 5.9 and try to figure out what was wrong with him. 

On a Wednesday night, as Charlie was sleeping, the Dr. came in to talk to me. I was told that my son had stage 4 Neuroblastoma cancer. I was in utter shock. I could not think about him having cancer, nor did I want to. 

They sat me down and talked to about a course of treatment that would include chemotherapy and eventually a stem cell transplant. Also in the future was radiation and additional surgeries. He had already been through so much with his feet I did not want to think of another string of doctors or clinic visits. It made me cry to think that he had cancer but I also knew what 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 Hematology, Oncology, Transplant Unit and receiving his first chemo. It was a long two weeks for everyone. I barley saw my other son, which hurt a lot. I felt like he was basically trapped in a room for 4 days straight but it was for Charlie’s 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 my other son, Brendan. With Charlie's chemo treatments being started he would be shuffled from place to place, but mostly stayed with my mom.

During his second round of chemo I met what I considered a part of my support group, another family with a child of Neuroblastoma. Charlie and Jerod became good friends and I became friends with his mom. We provided each other with a shoulder to cry on and an ear for listening. We would make calls to one another almost every time one of our boys would get sick. We got together on more than one occasion to talk and be there for each other on the rare occasion that the boys felt like they were just kids and not stuck in the hospital. 

From June thru October, Charlie had a total of 6 rounds chemo, with a stem cell harvest after his 3rd round of chemo. He had tumor removed on October 5, 2006, and several blood products that were packed with red blood cells and platelets given to him as part of his treatment. We spent a lot of time in the hospital between these treatments and the actual chemo's that were scheduled approximately 3-4 weeks apart. 

On November 17, 2006, he was admitted for his stem cell transplant and his high dose chemotherapy. 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 bad shivers and shakes. Otherwise, Charlie made it through his transplant and high dose chemo relatively well. We were able to come home for Christmas, which was a blessing. 

On the day after Christmas, he started radiation, which was a 3-week process. He got became quite nauseated during this period and was even hospitalized for about 4 days during the beginning of January 2007. 

He started his oral chemotherapy in February. 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. 

Although he was still receiving 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 went on his Make a Wish trip in June and Charlie finished his oral chemo in the beginning of July. He even made it to the State Fair and a few other things. He played inside and outside like nothing had ever happened. 

Then, at the end of September, I freaked out a bit when he was not feeling good. Although he only seemed to be having flu symptoms I worried that something had come back. We saw our pediatrician and she asked that our scans that were scheduled in mid October be moved up as soon as possible. 

They were rescheduled to the first week of October. Nothing was found, all the scans were clear. I was ecstatic but it did not explain him feeling horrible for such a long time.

On November 12, 2007 we restarted bi-lateral clubfoot casting in preparation for a tendon surgery. Charlie 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 31, November Charlie, casts and all, walked into my room. He said he didn’t feel well. He smelled like he had dirty diaper. I got up and got the stuff to change him and turned on the light. Immediately he started to scream at me to shut off the light; that it hurt. I turned it off after quickly changing him, but he still was screaming to make it stop it hurting. I thought maybe it was the bright light.

However, early in the morning, he started vomiting and being very lethargic. He could not lift himself or even his head off my bed while vomiting. This had me very worried. I got him into the car and headed to Milwaukee, dropping of Brendan off with my dad. I picked up my aunt on the way. That way I would have someone to sit by him in the car in case he vomited or needed help of any kind. 

When we got up to the hospital they immediately ushered us into a room. 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 hemorrhage on Charlie’s brain. What’s worse was that it could possibly be an underlying tumor that they could not see because of how much blood was on the brain. He sent us strait to ICU to be monitored. 

After a few days in ICU, Charlie was moved to the surgical floor to begin therapy and to see if there was any sign of cancer or a tumor of any kind visible thru a series of various scans and tests. He was hospitalized till December 11 and received no answers except that they could not see any signs of cancer, tumor, or where the blood was coming from either.

Charlie was partially incapable of using his left side. Yet, we still had no answers. The Drs. said that they were going to monitor the bleeding via CTs and MRIs and that they would run more tests as they saw fit but we were to take him 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 bleeding.

In 2008 we found out. 

Charlie had two brain tumors removed and several rounds of chemo radiation and maintenance chemotherapy followed. 

In January 2010, Melissa gave this update: A couple of months ago Charlie was diagnosed again with more cancer. He is in the process of starting a new round of chemo along with oral meds. He is stable and still in fighting condition. He is going to go back to school this week and is excited to be a part of things again.

The last update simply read: Charlie passed away on March 12, 2010.

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If you can, please help fund childhood cancer research by sponsoring my shave. It will mark five years to the day of his passing. Simply click here and give what you can. Every bit helps. Thank you.

Until next time from the booth…

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