We took a day trip to Tampa yesterday to meet with my oncologist and he has said that I will not need any more chemo treatments and can just go right to transplant. Giving me another treatment at this time is only going to risk me having major complications, and he was afraid that if something were to happen since you never know what complications can arise from each chemo treatment, then I would not be eligible for transplant and no one wants that. He said if the leukemia was going to return he thought it would return with the treatment or not. I am just fine with this decision, as I am not back to myself from the August treatment and ICU stay, I like the idea of having this extra time to gain my strength back, etc. before going into transplant. Also there is a lot to do with testing for me, at home getting us ready to go, and I need to be my best to be able to get it all done.
As of right now I am scheduled for October 25 th at Moffit to begin transplant. Things are not 100% yet, my local oncologist will be talking with transplant team and doctors on Monday and then we will move forward from there. Moffit is an excellent transplant center, but they are just starting cord transplants, so basically I will be first one at the facility, which from what I can see could have many positives also. The doctors certainly have done them before, but because the facility did not have the doctor on staff there till 4 months ago they did not do them. They have her now and are starting them. We are going to make sure that I will receive the best possible care when getting my transplant.
We are teaming up with the National Foundation for Transplants and doing some fundraising. When I met with the transplant coordinator, the first thing that she told me was that we would need to raise funds to defray the living and medical costs of transplant. Everyone who has a transplant needs to do it due to the high costs, etc. I am in the process of getting all the paperwork together and the account should be set up soon. We will have an online account for direct donations and letters will be going out to all our family and friends, etc. When we go to Tampa, we have to move there for 100 days or more. We have to rent an apartment that is owned by the hospital where transplant families stay for $65 or $75 a day, plus we have to maintain our mortgage and home bills here, medical insurance, etc. so it can become very costly with us out of work. I was happy to hear there is an organization who helps you with this overwhelming task.
My parents and many friends and family in New York jumped on it right away and set up two fundraising events in Rome, NY for us. This weekend they are holding a car wash / bake sale. On October 18 th they are holding a Cancer is Not An Option benefit. They have sold hundreds of tickets already, and they will be having a bone marrow drive for both me and another local girl who needs a transplant, raffles, food, prizes, etc. They are really doing amazing things and working so hard, it sounds like a really fun event to go to, and most of all it is helping raise a lot of awareness of bone marrow transplants, leukemia, etc. Today there will be an article in the Rome paper about the car wash and they are working on a feature article before the benefit raising awareness of how important it is to become a donor, etc. I wish we were able to be there to thank everyone that is helping us, but if all works out I will be in Tampa already and not able to attend.
For those of you who live in Rome and read my blog, tomorrow there is a car wash being held, and all proceeds will be donated to our family. Each car is $5.00
FALCONE'S TOUCH FREE CAR WASH 1119 ERIE BLVD. WEST ROME, N.Y. 9-5 PM
Thank you very much to the Falcone's for donating the day to our family and to everyone who organized it, we don't know how to thank you for all that you are doing, it is wonderful and overwhelming. Steven and I are definitely the kind of people who pride themselves on taking care of our family on our own, and to have to accept help at this time is not an easy thing. We have realized that this is the most important thing we will do in our lives and are not in a position to refuse help, so we are opening our hearts and accepting it all and are very thankful we have so many wonderful people who care about us and our family and are willing to help us.
I will post more information as I have it when the NFT account is set up. The great thing about this organization is that for every $5,000 you deposit, they give you $1,000.
We are working on finishing up our home this weekend and hope to be home and get to spend the next 5 weeks there before we are off again for our transplant adventure.