Birthdays, School Days, and the "New Normal"....

First, the not fun stuff... Last week's clinic visit started out GREAT. Sam was in good spirits and the doctors were talking about how overall she is doing so well. We were discussing removing her PICC line in about 8 weeks and hopefully getting her off of steroids in 4-8 weeks as well. Then when I got home the phone rang. Sam's counts came back and her white blood cells and platelets were down 50% of where they have been over the last few months. Not in a dangerously low level as they used to be but still not the trend we want to see. The docs are hopeful it is a reaction to the medication she is on for her colitis as this can interfere with the cyclosporine and be somewhat of a marrow suppressant. We will be lowering that medication significantly this week and next hoping her counts rise again. The other option is it is due to the steroid taper which is not great news as it is indicative of the steroid treating some unknown "autoimmune component" and would require us to stop the taper. My last personal hope although not the docs theory is that Sam's surgery for the replacement G tube "ate up" some of her platelets and white cells for recovery/healing. This happened right after transplant and we briefly saw a dip in her numbers so I'm not "just" basing my opinion on my self-appointed interned M.D. license:)

       This past weekend was Sam's bday! She is two years old now and she knows it:) We had a quiet day at home with Brandon, Kaeden, and both of my parents. Sam opened gifts in the morning and we did cake in the evening. She had been specifically "asking for things" for her "birfday" for weeks and she was pleasantly surprised to find all the wrapped gifts in the basement after waking like x-mas morning. She felt special and we celebrated her all day! We took a long family walk along the lake and took some pictures in our "Sammy Strong" t-shirts! Even though it wasn't a "party" with lots of folks around, she felt loved and so it was a successful birthday for sure!

        Kaeden also started Kindergarten this past week and so another transition in our house took place. He was excited and ready to go back to school! Sam loves riding in the car to take her big brother to school as it is one of her few "outings" but she must remain in the car with BaBa while I take him inside. She has gotten used to this routine as this is what we do to grocery shop, target runs., Kaeden's soccer lessons, playdates etc. She stays in the car or drives around while I go inside to quickly get what we need. Not ideal, but again it's our normal and not something we think too much about anymore.

Each night, I lay out the kids bedtime clothes and outfits for the next day. I paused the other night before Kaeden's first day as I looked at Sam's "night time gear." Some of it is normal toddler stuff: a diaper, rash cream, pjs etc. A lot of it though is not. Heparin syringes, sterile gloves, alcohol swabs, green caps, and an ACE wrap for her PICC central line. Myleplex transfer bandage for her G tube and still a long line-up of meds with her attachment stomach tube now as well. Every night this routine takes place and it is pretty much second nature at this point. Sam has gotten SO much better with all of this care and so have we. I remember the first weeks with her PICC line and G tube and how terrifying and overwhelming it all felt for all of us. Sam screamed when we had to do anything and we literally would shake and sweat for fear of doing something incorrectly that could lead to infection or worse.  I feel deeply for the many families that I see join the support group "Band of Mothers Against Aplastic Anemia" on FB each week/month as they are filled with this same overwhelming sense of fear and anxiety as they begin their battles with this disease. While I still feel that fear and anxiety creep in almost daily, the routine of it all has truly become a "new normal."

         As I looked at all the smiling babes and toddlers being carried in their mothers' arms into Kaeden's school on Tuesday, my heart sank a bit as I peered back at Sam through the car window. Her excited eyes looked back at me and then to all the kids walking into the building. It can be sad seeing everyday things that she misses out on, but I know how far we've come and if we keep heading in the right direction, there will be SO many opportunities for her to have these experiences in the future. This gift is not lost a bit on us especially with continued reminders of those lost within the Aplastic Anemia community over the last few weeks and months around the country. Very hopeful her counts rebound this next week and we continue in a relatively "calm" way with our "new normal" which gets easier and easier each day!