A New Normal

I try not to look at the big picture, or think about how long we have been here and the fact that an entire summer has been spent in the hospital, or to fully realize how rare and how critical his condition is. It just isn't helpful in any way to our every day lives here. Somehow this has become normal and we have found our own little routine in the confines of this tiny little hospital room and within the space we have at the Ronald McDonald House. This is our new normal for the time being and we have to make the best of it. At the same time, I am also becoming acutely aware of the fact that life is moving on all around us. We miss home, our family and dear friends terribly and we miss our regular old boring life. But we know that our loved ones will be waiting with open arms to welcome us back home when the time comes. It just seems that day is very distant and uncertain still. And I know we will all be changed from this experience, and I wonder how much the world around us will have changed while we were gone. 

Here we are 21 days after his ATG treatment ended, nearly ten weeks away from home, and still no signs of bone marrow growth. This is the week that our doctors said we would start talking about transplant and sure enough our doctor was in our room early this morning. There is still time for his marrow to recover but, at the same time, we have achieved our goals for this treatment since his liver inflammation is all but gone. Nobody really expected this treatment to be enough to salvage his marrow, we have been mentally preparing for a transplant this whole time. In the meantime, Nathan remains isolated to his room since he continues to shead his rhino virus despite having no cold symptoms for about a week now. Suffice it to say that we are increasingly antsy to just get on with it and try a real solution while he is still well appearing and happy and could be expected to handle the transplant and the conditioning well. And, yes, we are also longing to get back home and to unpause our lives and begin really living again only with a new perspective and deep appreciation for our many blessings. 

We are preparing Camryn too. She is incredible, really and I am in awe of her complete openness to give this huge gift to her little brother and her willingness to put aside her very real fears to hopefully help him. We are also not really acknowledging the huge-ness of bone marrow donation when talking to her in case it doesn't actually happen, she doesn't pass the donor process or there are any major complications. She knows it's a pretty big deal and what she is doing is a very good thing, but building it up too much will only cause anxiety or a possible let down in the future. For now, we are living in the moment and trying to be as normal as we can. Today she will have her first (and hopefully only) series of blood draws and then start preparing for the actual marrow extraction that may take place as soon as three weeks from now. She is terrified of needles and has never had a blood draw before but we hope that all the preparation that we have done with her and the work she has done with Jenny her psychologist will make this process go smoothly. Assuming we don't see consistent signs of growth in Nathan's labs, his pre-transplant conditioning could begin in about  2-3 weeks then the extraction and transplant in 3-4. Camryn has requested that she watch her cells go into Nathan (it is essentially done the same as a blood transfusion) and we are going to try to make that happen as I imagine it'll be very therapeutic for her. 

Clinical Update

As I mentioned above, our concerns over his liver are all but gone as the elevated numbers continue to trend down. I am so thankful to not have to worry about the possibility of a liver transplant as well as the bone marrow transplant. Today's lab numbers are below, again the blood counts are not indicative of anything given all the blood products and immunosupression he has had but I wanted to include them here anyway. Normal ranges are in parenthesis after each number for comparison. 

Blood Counts
WBC: 0.3  (4.0-12.0)

Neutrophil Count: 132 (1400-1600)

RBC: 3.26 (4.0-5.3)

Hemoglobin: 9.6 (11.5-14.5)
He received a RBC transfusion two days ago.

Platelets: 14 (150-450)

He is getting platelet transfusions every 1-2 days and will get a transfusion again today.

Liver Inflammation

AST: 74 (23-58)

ALT: 259 (6-35)

Total Bili: 1.3 (0-1.1)

Medication Notes

His tacrolimus medication has been increased again as the doctors attempt to maintain a therapeutic level in his blood stream. I really hope this levels off and we have a more consistent dose before the transplant process begins. He continues to wean off steroids and will likely be completely weaned next week. He remains on GCFS/Neupogen at a double dose to try to stimulate his bone marrow to begin producing neutrophils. He continues on an antibiotic to inhibit bacterial growth as well as other medications to treat any symptoms that he is encountering due to his illness or his medications such as his slightly elevated blood pressure and acid reflux. And we are still awaiting genetic results which will likely still take a long time. We may have some pieces to his genetic puzzle before transplant or we may not, we are preparing for either possibility but also open to the distant chance that his marrow could begin to really rebuild over the next couple of weeks without a transplant. Who knows what the future will hold...