MaryAshley update: after much discussion and thought with doctors, friends, family, God, and MaryAshley, MA made the decision that she wants to go back to LA and give it all she has to get a kidney! We were very open with her about the process, the possibility of complications, what she would go through, and about being apart from our friends and family. She listened, cried a bit, asked great questions, and thought about it for a few days. She came to us a couple of days ago on her own and said, “I want to go to California and try to get a kidney!” We talked and I told her how brave she is and that if she ever felt she needed to change her mind that she could. She said, “Well, I’m not changing my mind!!”. So, the timing we had hoped for, to do most of this over the summer while I was off has not worked out, but we will go forth and do everything in our power to do the best we can for MA! She had to get a chicken pox booster shot today and can not start treatments until that has been in for 4 weeks. So, we are looking at heading to LA mid August and will likely be there for a few months. I want to express how much the love and support of you all has meant to us and has gotten us through 18 years ; and I know with that and her angels above, it will take us further. We are blessed beyond measure!
What does this mean? We will start with several weeks of outpatient all day IV infusions to help bring her antibodies down. I will continue to do her hemodialysis wherever we are staying. Hopefully, at that time her antibody levels will be low enough to match a donor. They hope to transplant her within a month from that. We will be praying that there is a matching kidney, that her blood vessels can support it, and that her body will not reject it.
Many people have asked how to help, and so many have already helped- THANK YOU ALL!! I have made a list of the top things that we are trying to resolve a plan for, and decided since many have asked I will put it out there in case someone we know has a connection to a resource or someone that may help.
1- Anyone that has frequent flyer miles they will not be using and willing to donate would help tremendously!!!
2-We are hoping to be able to stay at the Ronald McDonal House some. If anyone has a connection to an apartment in LA they are willing to rent out- please let me know.
3- Any CCSD employee that would be willing to donate any PTO/sick leave hours would be greatly appreciated as I will miss much more work than I had anticipated .
4- Contributions to COTA will be a huge help as well.
And as always, continued love and prayers are the most help of all! Blessings to all!