Another Milestone...

      On October 10th, Sam reached the 6 month post transplant marker! Although these dates are somewhat arbitrary based on overall statistics and averages, it still helps to have these concrete goals and milestones to focus on during a long road of recovery. This one had a special significance as well based on a distinct memory. After Sam's diagnosis and learning Kaeden was a perfect match, we had over a month of "waiting and worrying" while Sam quickly deteriorated. During this time, we started exploring second opinions at Milwaukee WI and Cincinnati. We were "stuck" waiting for a panel of genetic tests that Sam's blood "failed" several times simply because her body did not have enough cells due to the severity of her disease. These are very expensive and rare tests, where the blood samples are sent to a lab in Canada each time and it took weeks to receive each "failed" result. Her blood was also sent to a specialty lab in Boston MA for a clinical trial, but failed to yield results there as well. We moved onto the skin biopsy for results but knew these would take 2-4 weeks also.
       During this two week time frame, Brandon drove to Milwaukee and met with the most well-respected transplant doc for Aplastic Anemia in the country. We had already been in contact with him for several weeks via phone/e-mail and he was familiar with Sam's case, but we needed to go in person for a "formal second opinion" and to make a final decision as to where we would receive her transplant. This doc is a "character" but in a good way. He and I developed a good rapport from the start. He gave me his cell phone number without hesitation and often answered and texted on the weekends etc. He was invested, driven, obsessed even with treating aplastic anemia. He was confident, honest, and straightforward.
          As Brandon drove in the snow and traffic to Milwaukee, I stayed back with Sam because she was not well enough to make the trip. At the time, she was receiving three platelet transfusions per week, red blood once per week, and had stopped walking, talking, and eating. She would have fevers and was hospitalized at least one to two times per week to receive IV antibiotics. I spoke with the doc over the phone as Brandon made his way inching down 94. There was A LOT said during this conversation but I remember one statement above all else. When asked about outcome probabilities for Sam, he stated without hesitation, "IF we can get her to transplant without acquiring an infection and through the six months post, her outlook is pretty darn good!" He was honest. He was confident. He was a straight shooter. Upbeat even, but no one had laid it out that clearly to us before. I was appreciative but all I heard was the "IF." I remember it feeling like such an out of body experience. It was as if time stopped and the floor dropped out from under me. As I looked down at Sam on my lap and stared out the window watching snowflakes fall to the ground, the fear grabbed hold. "IF..... IF...... IF....." I kept saying out loud as I got off the phone. He was an expert, he has performed more AA transplants than anyone else, and he said IF! The reality of the situation hit me and it hit me hard. In the end, we obviously decided to stay in Chicago, but this docs recommendations and collaboration with our Chicago team helped push things along in a more urgent manner and we were very appreciative of this.
         So despite a huge change in her overall status, the six month marker was not lost on us at all. No restrictions have been lifted, her WBC count remains lower than it should, she is still receiving IVIG transfusions to boost immunity, is still taking a slew of intense medications, but overall she is doing "pretty darn good!" There may be some obstacles and hurdles ahead we know, but we REALLY hope that this expert was right and the MOST difficult days are behind us! We will return to clinic Friday and depending on her numbers, possibly again Monday for an IVIG transfusion, but we may be able to switch her from an IV pentamadine (anti-pneumonia) to a twice weekly medication through her G-Tube. This medication can sometimes cause a dip in white blood cell count though, so this will only be possible if her numbers "hold" from the last month and don't take another "dip." Either way, Sam made it to six months! Halfway to one year. Another milestone. Another marker off the list. Another memory of heartache and fear to start to "let go." Everyday, I hope we get further and further away from that "IF" until it's such a blurry memory, that it feels like another lifetime!
        We wanted to also say a heartfelt thank you to family and friends who donated or joined the Be the Match registry in September. During that month, the Villanova football coach matched donations up to 200,000 and that mark was met! We have received several letters in the mail informing us of people who donated in Sam's honor and we are truly thankful.  I can't imagine how scary receiving a bone marrow transplant was 10 years ago and I hope that 10 years from now research and medical advances will allow for even more lives to be saved. Thanks again from the bottom of our hearts for EVERYTHING and ALL of the support over the last year. Go Sammystrong Go!