April 10th was exactly one year from Sam's transplant. This was when Kaeden underwent the bone marrow surgical extraction and a few short hours later, they were transfused into Sam. In the transplant world this is called Day 0 and is literally thought of as a "new birth." So one year post-transplant is referred to as the patient's 1st Re-Birthday. April 10th coincidentally also happens to be "national sibling day" and the "Be the Match" organization hosted a 5k walk/run on April 11th in Chicago this year. So all in all this past weekend was just really special for our family. We had family and close friends fly and drive in from near and far. Brandon and I pushed Sam in the buggy for the 5K run and several family members and close friend joined "Team Sammystrong" as well. Kaeden participated in the kids 1K race which was unfortunately at the same time as the 5K so Brandon and I missed it. Luckily Baba, Uncle Kyle, Bapa, and Uncle Kurt had videos because he won! He was really excited and followed his plan to stay at a "steady Eddy" pace until he saw the finish line. I guess I forgot to mention a few minor race details though because he "Forest Gumped" the finish line and just kept going and going until he finally heard Baba and Uncle Kurt running after him that he could stop:)
After the race we had a small celebration for Sam and Kaeden in our neighborhood. It was truly awesome to see so many familiar faces that we haven't been able to see for some time now. A few friend's children came to the party too and this was the highlight for me for sure! Since we have been keeping Sam basically isolated socially, she really has had little to no contact with other kids besides Kaeden. At the race she was dancing up a storm with one of my best friends' daughters and at the party wanted to stay near the other four boys ranging in ages from 1-6 the whole time too. She was having a ball! I was worried she may feel overwhelmed by the days events but she was the same social butterfly she was before her illness and this was extremely comforting and delightful to witness. The whole weekend honestly felt a little bit like we were living "someone else's life" for a few days. "Out and about" at the run, a party where Sam was there.... eating chicken nuggets and cake! Truly an amazing view after the journey she's had.
Following this amazing weekend, Sam had a long day at the hospital for her post one year BMT check-up. The day started with an echocardiogram followed by an EKG. She was at first terrified of this process even though it is a pain free procedure. Luckily we had a really patient nurse who allowed me the time to calm her, demonstrate etc. etc. This makes a huge difference! Both exams are looking at her heart health due to chemotherapy risks. Next, she had a full audiology exam because she will remain at risk for hearing loss for some time due to chemotherapy and high-dose broad spectrum IV antibiotics that she received pre-and post-transplant due to her having no working immune system and the numerous infections we were trying to fight off. She did really well with this and they have no concerns about her hearing at this time. Lastly, we made our way to clinic for a full blood work-up which she normally has with some additional tests tacked on as well. Since she no longer has a PICC line, drawing blood from her is not easy on her or us. Luckily it only took two attempts this week and we did not need to keep the "line in" because the doc is still holding out on giving her IVIG. All her counts looked good except her IGG is still in the lower range. HOWEVER, it really held at almost the same number over the last month instead of dropping quickly as it has, so this is promising that her B cell line in particular could be starting to show some recovery! We also were told to stop her cyclosporine medication and two others at this visit. This is also a great step because it actively suppresses her immune system to ward off GVHD (graft vs. host disease). We have to keep a close eye on her skin rashes as well as her colitis symptoms which can be indications of GVHD but are really hopeful that she will do well since we did a really long and slow weaning process over the last several months. The last thing on the "to do" list is next week, she will need to get a new G-Tube as it has already been four months since the last one was placed. We are going to attempt to do it without general anesthesia first. I REALLY hope we are able to keep her relatively calm and that there are no blockages along her tract this time. If not, I have spoken with the IR team and ensured she is already scheduled for anesthesia that morning and she will arrive "NPO." This will make sure we don't sit around with her open wound for 8+ hours awaiting a break in the typical surgery schedule as we have in the past. After this, if there is no need to go back on any more transplant medications over the next few months, we will probably remove the G-Tube by the end of summer. The healing process varies but we will cross that bridge when we get to it:)!
We really want to say THANK YOU to every one of our family members, friends, and all those who have followed Sam and Kaeden's transplant journey. We would not be where we are today without an awesome support system. This experience has forever changed our family in numerous and incomprehensible ways. One positive outcome though (besides Sam's adorable curly hair:), is being able to witness first-hand the giving and good nature of those around you. Whether its' people you barely know, your family, or a best friend you've had for years it's a blessing to witness love at work. I hope this is a lesson Kaeden and Sam will be able to hold onto for life.
Below is a link to a slideshow my younger brother made to show our family after our little celebration. We hope as Sam's immunity grows, team Sammystrong and the Be the Match team, as well as the after-party will grow with it! Some of the images feel a bit personal, but we decided if it inspires one person to either join the registry or donate cord blood, it's worth it! Thanks again Uncle Kyle for the beautiful memento! Technology is not my strong suit, so hopefully this link works:)
