Week of Chemo

Sorry we haven't posted all week. We've been in the hospital for chemo this week. We just got home about an hour ago. It was a good stay. Chemo went well and we are very glad to be home. She is not due back for chemo until her counts return and they don't expect that for a couple of weeks, so if Avarie can stay healthy we will be home for a couple of weeks. I'm not holding my breath on that one, but its a nice dream. She already has a little cough, but her lungs were clear and there was no fever so we got to come home. Her counts are great right now so hopefully they will stay that way for several more days to help her get over this.
We had a great day at the hospital today. I want to share an experience we had there today that has made me grateful for our struggles. Its amazing to watch others and what they are going through, it helps you to not drown in your own problems. We attended a birthday party at the hospital today for a little boy turning 1. His name is Caiden. He is the cutest little thing in the world. Avarie loved being at the party and had a GREAT time. She played with Caiden's older sister Annah, she is also four and Avarie loved her. Caiden is a patient there he has very aggressive brain cancer. I hope his parents don't mind me sharing this, it was just such a great day for me to connect with another family at the hospital that is going through a hard time too. Caiden has had 25 surgeries to have tumors removed and was on his last dose of chemo this week and they just found a new tumor. It is so sad to see a sweet little helpless baby go through something so horrible and yet he was smiling and happy to see everyone at the party. Avarie and his sister Annah where blowing bubbles for him and he was so excited by the bubbles. It was great to step away from my problems for a day and feel for someone else. It was also great to connect with someone else there and start to have a support structure there at the hospital since we spend so much time there. So please all that are remembering Avarie in there prayers we are asking that you also remember Caiden. I know his family could use some prayers right now too.
We also got word from the transplant Dr at OHSU. Her comment about Avarie was "She is such a broken little girl". She does not want to do the transplant until closer to when Avarie is scheduled for the maintenance stage of chemo, which is June. So we will be spending our summer at OHSU. Until then we will continue with the chemo regimen that we are on. I am a little frustrated to think that we will continue to stay in the hospital as much as we are and then spend 4-6 weeks in the transplant and then 3 months of intensive follow up care which will require frequent hospitalizations. Hopefully if all goes well and there are no complications we will be able to resume a normal life around October or November. That makes me take a deep breath and roll my eyes to write it and think about it, but that is our best case scenario right now. It will take her almost a year to fully recover after the transplant and there are some things that will take longer like extreme exhaustion. In our research that seems to be a really long on going problem for most all transplant patients. If that's the worst that we'll take it.