Our Mission is Remission

Austin has been home since Monday and has been feeling pretty good. He does struggle with his digestive track and it's hard for him to go to the bathroom sometimes. He has stomach aches a lot and feels crummy sometimes. But with that being said he is doing amazing. I even caught him running around the house yesterday. It feels like a miracle.

Monday we are getting a PET scan, the Doctors call it the 'Remission Evaluation Scan'. In other words we are going to find out if he is in remission or not and this last round of chemo might be his last. Whenever I think about this its been really hard. I'm scared and nervous. And hopeful. When we started this thing they gave us a 50/50 chance. Not great odds. When they found out which specific type of PTLD it was a 60%-70% chance. Still not great odds. At that point I was finally feeling like I could do more research on my own after going through the initial shock, the move, being in survival mode for about 6 weeks. But can I tell you that there is just not a lot out there on PTLD, especially pediatric PTLD? Think of it this way, PTLD happens in 3%-5% of kidney transplants, Boston Children's performs 35-40 pediatric kidney transplants a year. Since only 3-5 people out of a hundred get it Boston Children's could go a whole year without having a case. And there are 4 different types of PTLD each with it's own set of challenges and different treatment plans. We are talking low numbers which does not equal very much data. There is a vast parent library available on the oncology floor. When I asked for help to find info they only had one packet of information that was 5 years old. As I was reading on my own I did find a trend. PTLD comes back in 30-40% of cases, but of those cases that came back almost all went back into remission. It was exciting to read. So I took my findings to the attending and he agreed with my findings. Austin has responded very well to chemo and he has been able to run the full course so far. He is very unusual since he is the first kidney transplant patient they have been able to run a full Burkitts Lymphoma protocol on with Rituximab. They didn't give us great odds at the beginning since they didn't know how well his body would be able to tolerate the given treatment (thank you all for your prayers and good thoughts!). His large tumor melted away after the first course of chemo this increased his odds since he responded so well. I totally get why Doctors do not wish to quantify odds especially when there is not a lot of data to back it up. You don't want to give false hope. But really I was getting tired of hearing 'it's very treatable'. I wanted more and I really wanted to know what the Doctors were thinking. The PTLD specialist Dr. Kimberly Davies came to visit us and I asked her what she thought. While I was peppering her with questions about which complications he had and, what the Overall Survival Rate was for certain types with certain complications a smile touched her lips and she looked at me in concentration. She then went on the say that she thinks that Austin's chances of being Event Free (5 year out look) were about 95%. So now we sit and wait for Monday, crossing our fingers that indeed he will be in remission and that we have beat this thing. I know some of you are thinking, you guys beat it, stop worrying. But with our kid he is outlier in every sense of the word and we are not going to celebrate until they give us the green light and show us the scans. But we will be hopeful and we will rest a little easier knowing the chances are good we will see Austin grow up and do all the things that parents look forward to see their kids doing. And for that we are grateful.