Tommy J. - Quilt Finished in 2007

Born:  October 10, 2000

Illness: High Risk T Cell Lymphoblastic Lymphoma Stage 4

This quilt was made with squares made by a group participating in a service learning project from Wallace State Community College in Hanceville, AL.  Thank you LaDonna for heading up this quilt!

Tommy's Story

written by mom Sabrina

Tommy was born on October 10, 2000. He had fluid on his lungs so he spent 10 days in the neonatal unit. After that everything was fine until just after his fourth birthday. We noticed that one of the lymph nodes on the right side of his neck was swollen. We took him to his pediatrician. He did blood work that came back normal. He gave him some antibiotics and told us that if it wasn't better in a few weeks to bring him back. So two weeks later we were back. We did the blood work and again, it came back normal. So we decided to take him to an ENT. At that time the ENT said that it could just be enlarged and that it might not ever go back to it's normal size. That that happens some times. But that if more lymph nodes came up, to bring him back. By the end of January, he had several become enlarged in a matter of a few days. So we made an appointment for both the pediatrician and the ENT. The ped ran more blood tests, which came back normal. So off to the ENT we went. He immediately scheduled a biopsy. On February 9th Tommy had the first enlarged lymph node removed. My the next day, our ENT had the results and called Children's Hospital in Birmingham, Alabama. We were not told until February 16th. By that time everything had been prepared for us. Tommy started chemotherapy on March 1 2005. He will have to continue until March 1, 2007.

He has always tried to maintain an upbeat attitude. When the ENT came in to give us the diagnosis. I started crying. Tommy put his arms around me and told that he was going to be alright. I have found that when I should be his rock, he has been mine. There have been a lot of side effects to the chemo. Because he has T Cell, his treatment is pretty aggressive. He has 5 phases of chemotherapy over a two year period of time. The fifth being the longest called Long Term Maintenance. Besides the normal hospital stays for chemotherapy. He has been admitted for various side effects to the medications. In his second phase he spent 25 days in the hospital for fevers ranging all the way to 106. His third phase he spent weeks at a time in the hopital with mucisitis (Imagine your whole mouth being one big canker sore). It ran all the way from his mouth to his anis. His bowel movements were mainly blood with the first time he has it. But with each treatment in phase 3, the boughts of mucisitis lessened. His fourth phase was the worse. His bowels quit working. In a matter of three days, he looked like he was 9 months pregnant. Because his stomach was still making bile, he would gag constantly, especially if he was moved in any way. So they put a tube down his nose to his belly to drain the bile. His platelets were so low that he had blood vessels in his belly and forhead bust from the force of the retching.He had several blood and platelet transfusions. That was probably the most critical and scary time for him and us.

Today he is doing a lot better. He is on long term maintenance. The side effects are mild in comparison to the other 4 phases. He goes to kindergarden and tried to be a normal little boy. This spring he wants to play T-Ball. For all that he has been through and goes through. He really only wants to be a normal little boy. We know, though, that we wouldn't have gotten this far if it weren't for all of the prayers and support of our family, friends, community, and even perfect strangers.

Update:

Thursday, February 21, 2008 (From his caringbridge site)

Sorry it has been so long since I have updated this page. Tommy is doing really well. On the first of March, we will officially be one year off treatment. So please keep Tommy in your prayers, we have to go five years off treatment for him to be considered "cured". I want to take a moment to thank you all for being with us during this journey. It has definitely been a long road and we appreciate you all being there for us.