Medical Studies........

I got a phone call yesterday from one of Anna's liver doctors about a couple of studies she wanted us to participate in. The first study is a tolerance study. It's titled, "Immunosuppresion Withdrawal for Pediatric Living Donor Transplant Patients". This study seeks to understand if it is possible to slowly reduce and then completely stop your child's anti rejection medicine safely and find out if there are blood tests that can help transplant doctors in the future identify transplant patients who may be taken off of their anti-rejection medicines without developing rejection."

This is a study that was brought to our attention a couple years back. I was all for it when we first started discussing it, but since they wanted Anna to be on her once a day dose of Prograf for at least a year (which at the time, we were just starting) we decided that we would wait for her next appointment, next year, to really talk about it. Well, when Anna had transplant clinic last March it was indeed brought up again. I wanted to say yes right then and there, but I didn't have Jason with me and I wanted to discuss it with him first. We were given the information on the study when we left. After reading the information the cons outweighed the pros. We read things in this study information that scared us, and we had many more questions to ask. The main thing that worried us was the possibility of rejection. Anna has never had to deal with rejection, so why put her in harms way now? Also, this would require Anna to have a biopsy before the study starts. After that, Anna's medication will be slightly lowered every two weeks along with biweekly labs. Once she is totally weaned off of her medication, she would continue to have biweekly labs for 6 months, then monthly labs for 3 years! I wondered how Anna would deal with this. This was my dilemma, if Anna was having trouble taking her medication, or having some of the side effects from it, or if she was constantly getting sick (because this medication suppresses her immune system), or even problems with her kidneys from being on it for so long, this decision would be easier for us. We decided to hold off, until Anna's next appointment so that we could discuss this further with Anna'a doctors.

So, back to my phone call yesterday. Imagine my surprise when, out of the blue, Anna's liver doctor calls me. Of course my first thought was that there was something wrong with Anna's labs. But since it has been over a month since she last had them done (she gets labs every 3 months), and I was already told they were fine....anyway, the liver nurse is usually the person that calls! She has been meaning to call me for some time now, but she is a busy lady. She didn't waste anytime (she is a very busy woman you know)! We discussed my concerns and she answered my questions. She has always had a way of making me comfortable about Anna's care. She reassured me that the risk of rejection in so small, and since she will be monitored very closely, if there is any rejection it would be treated easily. We can withdrawal from the study at anytime, and she wouldn't blink an eye. She thinks that Anna would be one of the best candidates for this study. In her words, "Anna is a superstar! If anyone can do this, it is her." Then my next concern is the biopsy, but the doctor reminded me that Anna will be due in March again for a biopsy anyway. I forgot to ask if this would require additional visits to transplant clinic, and that is something I will e-mail her about today, along with a couple other small questions I failed to remember to ask. Usually, I would have a list, but I never expected her to call me! We also discussed this with Anna last night. She is totally fine with it. Jason did a great job at explaining things and answering her questions about it. Her only concern is missing school. Since she is in afternoon kindergarten, we would gets labs done either in the morning, or on Saturdays. Her biopsy would probably have to be done on a week day, and yes she would miss school that day. Of course, in the case of rejection, Anna would miss a few days if she has to be treated inpatient for that. It depends on the severity of the rejection, and again the risk is there, but it is minimal. Anna has always been fine with blood draws, she actually sits there with a smile on her face. She even thanks them when they're done. Actually, she has always been fine with everything medical in her life. She has done this stuff since day one.

Our decision, if you haven't guessed it already, is yes! It is always something that has interested us, something we always wanted to do. How cool would it be that Anna not have to take any medication, at all, after all of this! After all we have been through. When Anna was first diagnosed I knew our lives would never be normal again. I worried about Anna's quality of life. Now, six years later, Anna has a farely "normal life" Also, if people never participated in studies like these, where would we all be right now? I think of the first person that gave the ok to do the Kasai procedure on their baby. This procedure gave Anna much needed time to grow before she needed her new liver. In some cases, the child does well for years without a transplant. I went on to think of the first transplant, the first split liver transplant, the first pediatric liver transplant.....the first living liver donation transplant! I don't know if Anna would be here if it weren't for living donation!

Since I have been torn for, I guess about two year now, it seems a little strange that we are going for it now. It was the talk with Dr. Alonso that has pushed me. It's not like I was pressured into this at all. I just think that we are at a point in our lives that we are just ok with it. Both Jason and I have that feeling deep down inside, that Anna will do fine. Be fine.

I will update when I know what the plane is. Wish us LUCK!!!!!!