I would like to apologize for not updating sooner...been a crazy week...
Anthony remains in the hospital...We have had a hectic week of tests and meds and emotions. The second blood drive was another success, totaling 65 bags of blood received from great friends and family!!! Thank you to everyone that came out and donated blood and bought Anthony's Climb items!
Anthony had the PICC placed last Monday, June 18th. Everything went very well and is now stick and IV free! It has made him 10x happier! Steroid therapy continues and we are seeing his liver function slowly return to normal levels. There was some question as to the levels not falling quickly enough in the doctors' eyes, but they are finally happy with the downward trend. They have discontinued a number of meds, but Anthony remains on IV Caspo (anti-fungal prophylaxis), Bactrim 2x per week, his GCSF injections daily (to help boost white count), and of course his steroid therapy.
Lexi came in yesterday for her donor workup, which included an information session, allowing her to ask questions, bloodwork, and a meeting with anesthesia. She did awesome! She was very assertive and extremely cooperative! We are raising one smart cookie!
We also sat down with the transplant team yesterday to discuss the entire transplant process. We are very happy with our transplant team and they continue to be very helpful with our questions and concerns. We learned a lot during this meeting including pros and cons/ups and downs of the entire transplant process. We signed up for multiple clinical studies, where Anthony will become a number, but hopefully can help solve the unknown of this disease process and pay it forward to help someone else. One clinical study we signed up for was for them to harvest a piece of his testes. It is most likely that Anthony will be infertile due to the meds he needs for conditioning. We are doing this in hopes that in 10 years, they will have figured out how to create what's needed to make babies when he's ready. I needed to give him that option. Enough has been taken away from him already, I wouldn't feel right about not at least trying.
The transplant plan is as follows: Tuesday, July 3rd, they will place Anthony's Broviak (central line); Wednesday, July 4th, Ant will begin the conditioning process, which includes a chemo medication, ATP, and a few other meds; Monday, July 9th, Lexi will come in, they will harvest her bone marrow and transfuse into Anthony later that same day. We will be calling and remembering this day as Anthony's birthday...with the hope that Lexi's cells will give him "new life". He will need all new immunizations about a year post transplant since he will be making "new" blood.
It will be a long road from here, we are no where near the end. This is just the beginning. Anthony will not feel like himself for a long time, he may be sick from the conditioning meds and will probably not want to eat. Again, for the first time during this entire disease process, my baby will be sick and not his usual happy go lucky self :( The hope is that Lexi's stem cells will start engraftment in Anthony's marrow about 2 weeks post transplant. There is still a chance that it may not take, but we are hopeful.
They informed us that for 3 months from discharge, post transplant, Anthony will still not be able to be in crowds. He will be allowed visitors, but only if masked, both the visitor and himself. We will have weekly visits to the hospital to have progress checked. The goal is for Anthony to return to school 6 months post transplant, but that may change because it runs us smack into flu season and we cannot risk Ant getting sick.
We are making progress, and although it seems like it is taking forever, we are climbing...climbing up the tree to our goal. We have taken every negative and turned it into a positive and that is what we will continue to do. Anthony has made many friends in these nurses and has charmed them all with his exuberant personality. He has been in great spirits and can't wait to get out of here and home to some normalcy.
Please continue to hope and pray for the best, as we still have a very long way to go with this disease process. We appreciate everything everyone is doing for us, or has done, or has offered to help with. We have amazing friends and family and could not have made it this far without you all. Thank you thank you thank you from the bottom of our hearts!!!
...one drop at a time <3>3><3>3><>