As you know, Donavynn had surgery last week for new ear tubes and for his yearly post transplant lumbar puncture and bone marrow biopsy. I am happy to report that these will no longer be standard yearly tests because they were both negative! Both showed continued remission and his chimerisms showed 100% donor - which is exactly what we want!!! We are so grateful and our hearts are bursting with joy and gratitude. I can never thank his donor - Jessica - enough. Thank you honestly seems inadequate when you think about the fact that her donation literally SAVED his life. How many people can say that? That something they did for someone else ACTUALLY saved that persons life? As a nurse, I know that my knowledge and interventions have probably saved many lives - but this is on a whole other level. This goes beyond that... I think.
This has been such an incredibly long journey and of course it is not over. Once a child has cancer the journey is never really over, but knowing that he is considered a survivor and his transplant has been considered a success is so amazing. I can't begin to explain how it feels.
Our journey with the world of childhood cancer started when Donavynn was a mere 21 months old and I, his mother, was only 22 years old. I had no clue what was ahead for us all. I had many fears, and constant worry. Having been in nursing school at the time, with many friends and family members in the health care field I had a better understanding of it all than my husband, his father, did. I often wondered if navigating it all with knowledge was a gift or a curse. Would I have slept better if I was oblivious to all the risks? Would I have enjoyed the time with him more because it wouldn't have been so clouded with fear? Would every first have still made me wonder if it would be his only, or if he would miss out on many more firsts? To be honest, that fear I don't think will ever truly go away. I know I will always worry. I think that is just part of being a mother. It was haunting and painful and still is when the the fears creep in when people say things like "someday when he's a dad" or "when he starts driving". Those comments have always hurt a little, because the first thing that would pop into my head when they were said was "will that ever happen?" I don't know how to make that stop, but I do know that it isn't as prevalent anymore. The painful thoughts aren't always the first things that pop into my head when the future is discussed because now, I can picture it with him in it and for a long time, I wasn't sure if I should even entertain the thought of a future that had our boy in it. That felt like tempting fate, like setting myself up for heartache. The prayers and support we have received over the years from so many people have truly been amazing and I know are a large part of the reason that he is still with us. I truly believe, with all my heart that he is a miracle. I hope someday he will share his story with the world and show people that miracles do exist.
These possibly irrational thoughts still drive some of my actions to this day... for example, last night our youngest child had a fever at dinner time. I treated it like I normally would and daddy and I decided she should sleep with me so I could monitor her. I woke up at 3 am to hands of fire. Her temp was 103.7. I assumed she had an ear infection like she often does, but with her history like Donavynn's of alpha-one I worried that this could be pneumonia like she had in the spring because there were no other symptoms then either. I tried to give her something to bring her fever down but it came right back up. As a nurse I know all the things to do to help bring the fever down, could have went to Walmart to possibly see if they had suppositories though I think you have to ask for those... either way as a nurse I knew all the things to do. As a panicky mother of a cancer survivor I packed her tiny little booty in the van and took her to the ER. They all probably thought I was crazy, especially when every single test they did was negative and they ruled it a virus. But it made me feel better. If you haven't ever had to do the middle of the night rush to the hospital for a neutropenic child with cancer then I don't know how to make you understand what was going through my head last night or any other time that I probably jump the ER gun. I know in my mind that "normal" children don't need to go to the ER for a fever...
Anyway, enough of all that. This blog is pretty much my therapy - so if you are still reading - God bless you for struggling through my ramblings. Donavynn returns to school next week - he is finally starting to get a little excited - mostly because he has new clothes and can see his friends. I know I am going into this year a bit more relaxed because his case manager for his educational needs has already contacted me and we talked in length about his needs, my needs, my concerns etc. We are blessed to have her as an advocate for him. We've been pretty lucky through all of this to have many good advocates for him but had a few hiccups last year that sent me about over the edge so it is great knowing I don't have to worry this year because he has another "mama bear" advocating for him when I am not there.
I think that is all for now, should get some things done. Thanks for reading, thanks for praying. Please keep them coming!!!
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