Fanconi Anemia - Transplant

We are always waiting for the other shoe to drop; this is a common phrase for a family caring for a person diagnosed with Fanconi Anemia (FA). Our family has played the waiting game for almost ten years as Abbey was officially diagnosed with FA a day after her sixth birthday. In a few weeks, she will turn sweet sixteen.

Our last two visits at St. Jude have centered around the conversation of Abbey having her bone marrow transplant sooner rather than later. We received a lot of information at once and needed time to process and put a plan of action together for the near future. Based on Abbey's medical history leading up to current lab values, the lead hematologist at St. Jude has referred Abbey to Stanford for a study titled: Depleted Donor Stem Cell Transplant in Children and Adults With Fanconi Anemia After Being Conditioned With a Regimen Containing JSP191 Antibody. This transplant protocol was submitted to our insurance; it was approved and deemed medically necessary.

Until a few weeks ago, I never worried about Abbey having a donor match because we were told she had several 8/10 matches in the data system. 8/10 is not good enough for St Jude or Stanford so she does not have a match. They will continue looking for a 9/10 or 10/10 donor match, however until then, the plan is that Abbey will be participating in the half donor family study. This will coexist with her transplant at Stanford. The donor will more likely be Daryn or Drew. The order is normally sibling first and father second. The mother can be used but is usually third in order as pregnancies produce antibodies that would need to be removed before being given in transplant.

In a zoom meeting with the transplant study team at Stanford, they are looking to fly us out to California in May or June to meet in person. They will also complete any remaining tests that were not done at St. Jude. During this appointment, Abbey will be put on the schedule this fall for transplant.

The timeline, in a best case scenario, is that Abbey and I will be in California for three months. Abbey will be in the hospital for approximately four weeks and will then need to stay in the area for an additional 6-8 weeks post transplant.

Insurance will cover travel/lodging for one parent and the transplant recipient up to $10,000. This may sound like a lot, however this can be used up very quickly. I am going to apply for Ronald McDonald housing, however I anticipate that we will be placed on a waiting list. Insurance will cover $100 per night at a hotel and hotel prices (even with the Stanford patient discount) are well above that amount. I have gone back and forth with myself in regards to starting a GoFund Me account to cover travel/lodging expenses that will be incurred above what insurance will cover. Daryn and I started a GoFund Me account after she was first diagnosed years ago and I cannot express enough how much that was helpful in paying the monstrous medical bills that we did receive. For example, after insurance, we had a $15,000 bill from Cincinnati Children's that we were able to pay with that help. I have concluded that it is okay to ask for help, people want to help, and I should not feel ashamed to ask for help (even if it is financial) because people will help only if they can.

I worry a little about Daryn. He has been hit with a lot lately. His father has been given weeks left due to pancreatic cancer and now the news of Abbey and her treatment plan. We will be separated by almost 2000 miles for months and I will not be here as a support system for him. All of our other family and friends are states away. On a very positive note, Daryn has been given a chance to repair a relationship that he has longed for for many years and he is so hopeful to do so. I honestly think it is a small miracle that is much needed.

We have come to the decision together that it is in the best interest of our family for him to stay here with Drew and continue to work to pay our mortgage and bills. They say things happen in threes. I recently found out that my grandma has colon cancer. She may be needing hospice soon as well. I stepped down from my full-time position and transitioned back to a PRN position. It was the right thing to do as they deserved 110% of me and over the last few months I did not give them that. My boss even asked if I had something going on that she needed to be aware of that was affecting my performance. I told her no because based on principle there should be no excuses or justifications and I took full responsibility for my actions. I feel so guilty and bad that I let my boss down as well as one of my long-time friends. This company is amazing and I will be working hard to earn trust back. I hope to be able to continue my work with them as I love the work and it will keep my sanity. I have given a lot of information as I want to be as transparent and explanatory as possible. Please private message me if you have questions and I will answer them as honestly and thoroughly as possible.