Back in 2011 we started on an entirely new journey that didn't really allow much time for me to post here and that was why I went to strictly posting on his facebook page. I hope that will be different now.
I don't want to go over the last 5 in this post - so if you haven't been following along and want more info check out his page - the address is listed below but I will do a quick recap...
Since my last post Donavynn had his bone marrow transplant - he will be 5 years post transplant next month and he is doing well. 4 months after transplant we nearly lost him to a terrible infection that left him on life support for 5 weeks - with the doctors holding out little hope and me being pushed to discuss his "code status" on more than one occasion by one physician I hope to never see again. Apparently this type of infection this close after transplant, in addition to GVHD offered a very slim chance of survival - but by the grace of God thanks to his healing hands and our team praying for him nightly he made a miraculous recovery. We actually stopped by the clinic to see some of this providers today while we were up there for other things since he is now on yearly visit. It was nice to see everyone and not be there for any reason other than to visit them. Ok so now that he is considered a cancer survivor he has developed some late effects of treatment - hypothyroidism and growth hormone deficiency. He is monitored for all of that every 6 months and is on growth hormone and it has been working great. Today they increased his dosage and are pleased thus far with his progress. In 2013 we had our last child - a beautiful little girl named Charlytte. Due to a weird fluke (she had trigger finger so the doctors did a lot of lab work to rule out various causes such as arthritis and diabetes - during that lab work they found something abnormal) her liver enzymes were elevated requiring a further evaluation. We quickly learned that our princess has alpha one antitrypsin deficiency. Because this is genetic our other children were checked for it and not at all surprising Donavynn was found to have it as well. This was sad for us but also explained why his liver was so sensitive to treatment and why it reacted so harshly to many things. So this disorder can cause a wide array of issues in the worst case scenario but thankfully is often very mild and thus far is just that for our children. It can cause liver failure in children and lung problems including COPD in adulthood so we are encouraged to avoid anything that can increase their risks such as being around second hand smoke, camp fires etc. So today they had their appointments for this to see how things have been since the official diagnosis... my mind is racing trying to get down everything I want to say without being too long winded - as I have a tendency to write a novel when I mean to write a short story.
Donavynn
Appt 1 - ultrasound of the abdomen - everything is NORMAL
Labs - those that were back were normal! Still waiting on thyroid levels, growth factor 1, hgb A1C, and vitamin levels. - these two things mean they are decreasing his ursidiol (the medicine he's been on for his GVHD that they've kept him on since it seems to keep the liver enzymes down) to once/day.
Endocrine - good growth, increasing growth hormone slightly. No concerns from the endocrinologist.
Liver Care Team - gave a clean bill of health based on their assessment and the information listed above. They did do a complete history of the winter as they like to keep track of any respiratory illnesses due to their risk for damage to the lungs later on.
Charly
Labs - improved from initial diagnosis, very close to normal range - no ultrasound since hers was done a few months ago.
Liver Care Team - gave a clean bill of health based on their assessment and the lab values.
Both of them had a rough winter with multiple ear infections, Donavynn had bronchitis, and Flu A and Charly ended up with pneumonia - shockingly enough with the only symptom of a fever for a few hours - due to her hx and the late hour - I took her to the ER expecting an ear infection since she had zero symptoms prior to the fever - no cough, no runny nose or congestion etc. Thankfully it wasn't that serious and she was able to be treated at home with some antibiotics. This is likely the winters we can expect with the two of them so I'm glad summer is here.
Overall it has been a good few years here. I hate to speak too loudly. Donavynn is heading into 7th grade in the fall. It's hard to believe that it's been more than 10 years since we received that horrible diagnosis. It seems like a bad dream, like it was someone else's life. We are eternally grateful for our children's health and for all of those who keep them in their prayers. I know that if it wasn't for the prayers that he received and the grace of God that he would not be with us today. So thank you all and please keep praying. Remission does not equal a cure and the worry will never completely go away. Though many do consider the 5 year mark to be cured - we still must stay on top of things. His treatment increased his risk for a variety of health problems in edition to secondary cancers - so we continue to pray and be grateful for every healthy day. Do what you can to educate people - understand that childhood cancer is a family diagnosis, it is a lifetime war even after the battles may have been won as you monitor yearly for late effects and pray for clean scans and normal bone marrow. Our children need better treatments - less toxic, more effective treatment.
If you have any questions please feel free to ask. We are always open to helping educate people. Thank you again for your love, support, and prayers. Our family would not still be whole without them!!!
Much love from our home to yours!!! ~Team Donavynn~
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