5 years ago today we had what we thought would be the biggest curve ball our lives, a Leukemia diagnosis.  2 year later we would get another curve ball thrown our way with a diagnosis of APML.  When we last wrote we were awaiting genetic testing results for Michael, and those results would change the course for the rest of our lives.  Michael's genetic testing revealed that he had a double mutation of the BRCA-2 gene, which led to a diagnosis of Fanconi Anemia (FA).  A very rare genetic disorder that has impact on all major body systems.  This led to testing of both Becca and I, finding out that we both carry one of the mutations which led to Michael's diagnosis.  In turn, they tested Brett and he too has the double mutation and the diagnosis of FA. There are 23 types of Fanconi Anemia, with 22 of them falling into a group and the other one into a group all it's own. Unfortunately, our boys fall into that single group, the worst of the worst.

On Tuesday, Feb. 2, we met with a specialist at University of Minnesota FA Clinic in Minneapolis where both boys will now be treated and she broke it all down for us. The subtype of FA that our boys have is so rare that there are currently less than 100 of diagnosed cases in the world right now. Both boys will need bone marrow transplants if there is any chance of survival and quality of life into and past their 20's. This diagnosis explains the Leukemia that Michael has endured and will endure again along with the most likely coming of Leukemia for Brett. Because Michael has had Leukemia already, he will undergo the bone marrow transplant first. The start of finding a donor match is already started. It takes roughly 6-8 weeks to find the donor and get things in place. We are hoping for the transplant to happen in April at the earliest.  This will entail a 30 day(minimum) hospital stay at the M Health Fairview University of Minnesota Masonic Children's Hospital in Minneapolis where he will receive high dose chemo to kill off his bone marrow and the donor marrow is transplanted in.  When he has recovered enough to be discharged from the hospital he needs to stay within 30 minutes of the FA Clinic/Hospital for daily checks. This means we will need to rent an apartment close by in Minneapolis for 3-4 months. After that and when he is strong enough, he will come home. This is Michael's timeline barring any complications. About 2-3 months after Michael is home, we start the process for Brett's bone marrow transplant. Brett will go through the same procedures as Michael. Barring complications, he will start in the fall of 2021 with his 30 day inpatient stay and 3-4 month apartment in Minneapolis and hopefully return home in March or April of 2022. 
 
If there is any glimmer of sunshine in all of this, the doctor we are seeing in Minneapolis has treated more FA patients in the world and if you have the mutation our boys have, they are sent to her.  We are forever grateful for our family at AFCH, but we know that for this new diagnosis, the U of Minnesota is the best place for the boys.  
 
Make no bones about it, this is going to be a really tough year. We are scared and have many questions and don't know how to string the words together to make the questions. Don't know how we are going to live 240 miles apart from half our family at a time.   We know that the boys will have long roads ahead of them even after their transplants.  Their risk for cancers, tumors, and body systems failures are extremely high.
 
We are lost and appreciate any support.  As you may know both Becca and I have a difficult time asking for help. Please hold Brett and Michael in your prayers 

Thank you for all your support.
Craig, Becca, Brett, and Michael