Gavin

My baby. Sweet little thing. He has a story. A HUGE story. Where oh where to begin?? He has his own website. He doesn't even know anything about it. LOL. I was given the website by Vanderbilt Children's Hospital as a means of keeping our family and friends in the loop on what was going on with Gavin in his treatments. It was awesome, and I used it. Everyday I would write in the online journal. It kept me sane. I wrote all my innermost thoughts on there. Here is the link if you feel so inclined to read about what a mom deals with when her son is sick.A lot. Keep in mind that the website was way before there was Facebook and cool blogs like this one. If you don't feel like going there I will do a recap.

Gavin was born a normal healthy baby boy on April 7, 2001. We did not know anything was wrong with him until he was 6 months old. He caught a virus, but his condition (Cardiomyopathy) could have been caused by a virus or he could have been born with it, and it just took 6 months to show up. I took him to the Pediatrician three weeks in a row, and they kept saying nothing was wrong. 2ND week, they said he had a virus, nothing to do but give him Tylenol, one week and a whole bottle of Tylenol later, we were back at the Doctors, this time they did an X-ray and sent us to Vanderbilt. We were told that night, that he had Dilated Cardiomyopathy (which means enlarged heart)and that his heart was the size of a 17 year old males! We were also told he could need a heart transplant. They said they would give him drugs to hopefully shrink his heart. Eleven days later he was put on the heart transplant list. The medicines made him feel better, and his heart had not got any bigger, but had not gotten any smaller either. Nine days later he got a heart! Ten days later we were sent home, the day before Thanksgiving. He has done well after his transplant, only hospitalized twice for flu (just to make sure there was no rejection) and for routine tests, biopsies etc... He was doing fine until May 2004.He had been complaining of his belly hurting for a while, but it was never enough for him to want to take anything for it, or to lay down. We took him to the Doctor, first time they could not find anything wrong, second time, he was pale and dehydrated, so they sent us to Vanderbilt Children's hospital. After Cat scans, and ultrasounds and a lapropscopic (sp?) surgery and a myriad of tests he was diagnosed with Burkitt's Lymphoma. It is caused by the drugs he was taking to keep his body from rejecting the heart. There are only 4 or 5 different kinds of medicines he can take and they all cause cancer.

In 2006 Gavin was in pre-k and excelling well and loving it. All of the sudden we noticed his little nose started point up on the end. He looked like little Cindy Lou Hou from The Grinch who stole Christmas. I would touch it and squish it, and he would say " Mom stop it doesn't hurt" but I knew there was something wrong, it felt spongy. Not like normal cartilage of a nose should feel. We called the doctor and they sent us to a Ear Nose and Throat specialist. He did all sorts of tests and said yes it was our worst fear. CANCER. A fast growing cancerous tissue. The closest name to it they could come up with was Large diffuse B cell Lymphoma.

When Gavin was about to go into surgery, I asked him if he knew what they were going to do. He said" They are gonna go in there and get the Kleenex out!" I said "You put a Kleenex up your nose?" and he said "No! You said I had a fast growing tissue!" Out of the mouth of babes.

They did a biopsy and went in under his lip (from inside his mouth, there was no scarring visible from the outside) and scraped out as much as they could. Since they would have no way of knowing if they got all of the cancerous cells ,we still had to do chemo. Gavin had about six months of out patient chemo, which was way easier then the first round of cancer. He had a port put in (which is also called a central line, a more permanent IV for kids who are going to need lots of blood drawn and chemo etc..It keeps them from having to keep getting stuck with needles.) and we would go to Vandy once a week and they would hook him up to chemo, and he would get a infusion of chemo and then we would go home. Gavin was such a flirt, he would flirt with the nurses, and he really didn't have to much after affects. His hair thinned a tiny bit, and the doctors said he was not allowed to go to school, just so he wouldn't catch more illnesses.

Gavin always will get sicker easier then the rest of us. He also keeps the illness a lot longer then us. Has has had Pneumonia almost every winter since his heart transplant. Twice he was on a ventilator from complications to Pneumonia. Last February was one of the first that he did not get Pneumonia.

As one could imagine having a child that has had a heart transplant, and cancer twice, pneumonia too many times to count, it takes it toll. I live in a fear that every time Gavin gets a fever, that its his body is rejecting the heart. In fact we have to call Cardiology every time he gets a fever higher then 100.2. Sometimes I feel like we are sitting in a ticking time bomb just waiting the hear the bomb explode again, "Your son has cancer, or pneumonia, or fill in the blanks." I have an older son Jonah that has never broken a bone, I think maybe had blood drawn a whole 3 times in his life. Gavin has been stuck with more needles than you can imagine. When he first came home from the transplant, he had to get blood drawn twice a week, to check for levels. Until he was a year, they would draw blood out of a vein in his head! This is a normal procedure, hard to see, which is why they would not let parents be in the room when they did this. When he hit one year, they would draw the blood out of his legs or arms. It wasn't unheard of for them to try 5 or 6 times before they found a vein. Chemo shrinks your veins, and the poor baby barely ever cries now when he has to get blood drawn.

For now Gavin is healthy. He has to have a heart cath on June 15th 2010. Which it is considered "routine" but when they are taking a piece of your child's heart out, its never routine!

If you are interested in reading more about Gavin, I journaled almost daily while he was in the hospital, it was my sanity, there was lots of pictures posted and day by day updates.http://home.gofetch.org/home/gavinblack