The finish line.

These posts are getting further and further apart mainly because we've been so busy chasing our little boy around. Life has seemed so "normal" these last couple of months!

Since my last post:
Emerson's liver biopsy went smoothly without any complications. We spent the night on Unit 1 afterwards chasing our busy boy around. The next morning they drew blood work and we were able to go home. That week Em was in quite a bit of pain. Every time he would bend down to pick up a toy or move the wrong way he winced and cried out in pain. This lasted almost two weeks, poor guy. We received the results from the biopsy a week later. They were inconclusive.. It was not GVHD and it was not a virus which was good BUT we were still left clueless as to what was causing the elevation. The only good news we got from the biopsy was that the liver damage (shown by the elevated enzymes) was reversible.
           In the following weeks his liver enzymes continued to remain elevated but were stable and not climbing higher. Now that we were certain the elevation wasn't being caused by GVHD we were able to start weaning Emerson's immune suppressant drug he has been taking since transplant. This is done at 6 months post transplant (Day +180) and is a HUGE milestone as it means his immune cells will finally have a chance to grow without anything slowing them down. The wean is done over a course of 8-12 weeks and we must watch closely for any signs of GVHD/signs of his body rejecting the transplant.

Each week as we weaned his medication we saw an improvement in his liver enzymes and kidney function. In a month his liver enzymes were back to  NORMAL! They won't say that the immune suppressant drug was the cause because there has been no other documentation of that happening but I dont know what else it could have been. Since his numbers were looking so good we went down to bloodwork every 2 weeks for two months. At each appointment our visits became shorter. We no longer needed to see the dietitian because Emerson was back up to the 90th percentile for weight and was crushing food and fluids. He was finally starting to feel like himself again. The physical exams were quicker because we had no concerns and it was just a quick check-up. At each visit they would comment at how big he's getting and how good he looks, what a nice change.
        The only negative that came out of the immune suppressant wean was that Emerson eczema came back. It started on his calves and traveled up to his back and stomach, then to underneath his PICC line dressing. We tried for a couple weeks using a breathable dressing which meant sterile dressing changes once or twice daily. This was extremely worrisome because it increased the risk of another line infection which would mean another hospital stay and the potential for sepsis again.. During the last week of the wean Emerson's doctors and us decided it would be safest to remove Em's PICC line. This took a bit of preparation because the removal meant he'd need to be poked for all of his blood work. We scheduled his normal blood draws for a couple days later and also included his T-cell function test. This test is very important because it lets us know if the new cells growing are also able to function and fight an infection. This test can only be drawn on Thursdays as thats the only day the lab can process it. The labs were drawn and we went in to have his line removed. Hallelujah!! NO LINE! Em celebrated with his first full bath where he was able to splash and be worry free. Em would be able to go swimming and play in his water table for the first time!
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Emerson is now a healthy 5 year old boy. He will be entering into Kindergarten in the Fall and we could not be more proud. We have been transferred to the long term follow up clinic and are seen by an oncologist every 6 months and still see Dr Wright, our Immunologist, once a year. The entire thing now feels like just a bad dream. We are so busy living a "normal" life that its easy to forget what our sweet boy went through. We are reminded when we go back for appointments, when we see posts on social media of newly diagnosed SCID babes, or when facebook sends "memories" from years past. During those moments the past pain floods in and you feel like you're drowning. This only lasts for a brief moment until one of the kids shakes you from your thoughts and its right back to that happy busy life. This past year we were also able to find out who Emerson's bone marrow donor was. To be able to personally thank him for what he gave our family and show him the little boy he saved was something I prayed for for a long time. We hope that we are able to instill some hope into the world of any newly diagnosed SCID babies and families. That those first couple years are tough but that it will get better and that one day you will be living such a busy normal life that you too will forget about the heartaches.