I just realized how long it has been since I have updated Hannah's blog. The good thing about that is that it means that she has been living life to the fullest and there has been nothing bad to report. The bad news is that I am obviously writing since I have the time because I am sitting in the hospital with her tonight. Hannah has been doing amazingly well since transplant. We are so proud of our little girl and astounded by her strength. Every virus she gets she has been able to brush off without to much trouble until this past February. She caught a few illnesses that seem to really have taken a toll on her tonsils. She began snoring very loudly and developed symptoms of obstructive sleep apnea. After about a month of listening to it, I started to get very concerned that these symptoms popped out of no where and need to be addressed. Transplant recommended she see an ENT and drew an Epstein Barr Virus (Mono) lab on her to see if she had converted to positive.
Arriving at the ENT appointment, I thought that he was just going to tell me that she had big tonsils and he would recommend she get them removed. Even though that is what he said, I wasn't prepared for what he added to the reason why. He was concerned that since the enlarged tonsils were such a recent and out of the blue finding he was worried she might be in PTLD. I know what is PTLD?? Well, it is one of the major things post transplant we have to watch for with Hannah. PTLD is Post transplant lymphatic-proliferative disease. It is basically a type of lymphoma transplant kids can develop from their immunosuppression medication. When he said this to me, I felt like a bomb was dropped on top of me. I was not expecting this conversation! My heart just sank when he asked me, "do you know what I am talking about??" Of course I did, and it was a word that I had hoped that would never really need to be discussed in Hannah's lifetime.
This brings us to why we are here today. Her ENT doc recommended we get her tonsils and adenoids removed sooner rather than later. Transplant seems to be reassured that the pathology will come back negative since her labs look close to picture perfect. However, there is a small chance that she hasn't displayed the symptoms or it hasn't shown quite yet in the lab work. Running pathology on her tonsils is their best diagnostic tool. Even though it is another rare and small percentage, our concern is that we already are the small percent so what makes this any different. I feel a little reassured that they are not overly concerned but at the same time, the unknowns and what ifs are frightening. I wish we could say we paid our dues, but I know it just doesn't work that way. Life doesn't work that way.
As we approach Hannah's 4 year post transplant anniversary this coming May 7th, I hope we can celebrate not only her gift of life but her getting over this bump in her road of life! I watch all these kids suffering and it is heart breaking. I am so worried for my sweet Hannah Rose but whatever the results show I know she has got this! We are so blessed one way or another because there is more heart break out there than what we are dealing with right now. We are still the lucky ones because even though it will be a tough road if we get bad results, she still will hopefully have a decent fighting chance. Tonight hold your babies tight. Things can change so much and so quickly! I will say a prayer this evening not only for Hannah, but four other very amazing and strong kids....Triston, Jubi, Brett, and Ella we are thinking of you all and we know you got this too!!
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