Thanksgiving without Steroids... Woo Hoo!

So Sam had her first clinic visit in a month this past Monday. It was significant in a few ways. This is the longest stretch we haven't been at the hospital since her diagnosis January 30th of last year! It also was the day after months of tapering, that we finally got the OK to completely stop her steroid dose. This was great news as well. As we have significantly gone down on her dose, she has actually grown a cm this last month! The docs say that is a positive sign at this point as growth really isn't expected much in the first year at least post-transplant due to the amount of chemo and radiation her body received. The last significant piece was this was our first visit without our PICC line. Let's just say, the nurses were joking with me that I would be "dreaming of visions of PICC lines dancing in my head" that evening:) It's really hard to find a vein large enough that isn't "superficial" in her arm without a few trial and errors. It's hard to hold her down through this process for sure and as before she had her PICC line, we always end up with a vein that is not in an ideal spot. This time it was right on the inside of her little wrist so after they draw all her labs, she has to keep in a temporary IV until her numbers come back. A lot of tape and a plastic dome cover is placed over her hand so she doesn't rip it out and this makes it hard to distract her from it so she can play. It's one of those things, that we will just have to deal with from here on out and in the end is a good thing meaning we are moving in the right direction requiring less transfusions/IV medications.

Her counts overall really looked good. Her WBC is still slightly low at 4.1 (normal range is 6.0-12.0) but the doc says this is a fine number given she is still on an immune-suppresent (cyclosporine). For perspective a few months ago, we were at 2.1 and even that puts her ANC (overall measure of immunity above 1000). For MONTHS before transplant she had an ANC of 0 without one single WBC or neutrophil detectable in her body so a little below average is pretty darn good for us! Her chemistries are also at a good stable place and her weight gain while slowed down since steroid taper is still holding fine. The only slightly concerning number is her IGG (measure of passive immunity) was still pretty low even after getting an IVIG transfusion boost one month ago. The docs were really hoping to get to a place were she would only need IVIG every two to three months soon but that number is lagging a bit indicating her T-Cell line is still recovering slowly. This means on 12/22 we will have one of our dreaded LONG hospital days. We will start on the surgical floor where she will be put under for her g-tube replacement (has to be done every four months). We won't be able to give her any anti-anxiety type of medication through her PICC line before this either so I am going to have to try to advocate for a good anesthesiologist that will initially let me in the surgery room again. Then after she is done in post-op, we will have to go to the transplant transfusion floor for another three to four hours of an IVIG transfusion. Unfortunately these things can't be done simultaneously. We really hope this is one of the last times we have to have one of these long and eventful hospital days. In my head, I know we have gotten through worse and that we can do it, but it does bring up quite a bit of anxiety just thinking about it all and I know the days directly leading up to the procedure will be tense ones for sure.

Overall though we really can ONLY be incredibly thankful right now. As many people do, we love this time of year. Spending time with family and really slowing life down a bit to count your blessings is always a great thing. This year, we can honestly say those feelings of being humbly grateful take on a whole new meaning for us. It is my mission and hope that as a family we are able to carry that feeling on a permanent basis after this experience. I know it won't be possible every minute of everyday, but at least a few minutes of everyday seem like a great goal! We can't thank the close family and friend in our lives enough for this past year! I could list and describe 100's of acts of kindness we have witnessed and received. I do however want to briefly thank my mom, our BaBa for everything she's done and continues to do for us. Sam's health, Kaeden's emotional well-being, Brandon's work commitments, and my mental-health would be in a completely different place without her. I remember distinctly staring at my shaking hand as I trembled in the ER on January 30th saying to my mom "they think something is really wrong with her" as we were rushed to the oncology/blood disorders floor for our first night of treatment. The next day my mom was on a plane, she never left before transplant, left her job, and has lived with us ever since. I only hope I can follow this example of selflessness and giving for my children as they become adults and parents themselves. I know I have said it before but "it truly does take a village" and I hope you get to hug, love, and laugh with your village during this holiday of THANKS!