Tuesday, March 21, 2017

Yet, they were diligent

Today has been a rough day in my world of Shwachman Diamond Friends.  I've never experienced such a tight knit group.  I think we feel deeply, the sorrow of others in the group going through difficult things.  One sweet family just got their son home from not one, but two bone marrow transplants.  The second one was successful but only to a point.  They found out today that the 'clone' cells in his marrow are back and he is not a candidate for a third transplant.  I'm not sure what the plan will be for them.  I think they are still trying to figure out what comes next.

It was heartbreaking news.  It made for a hard day.  I met tonight with my Bishopric.  I was reminded about the principle of Grace.  When I came home, I pondered more on the phrase, 'Grace shall be as your day.'  It gave me peace and I hope that in the current blows my friend has sustained today, she will too will feel God's grace; light that fills her day.  I made this tonight...maybe I will send it to her.



I did hear back from NIH finally and we have a conference call scheduled for Thursday.  I'm not sure who all will be involved in this meeting but I know for sure the genetic counselor will be on the line. My expectations for this meeting are low, mostly because it's hard to work yourself up for good, solid answers, only to be let down again.  The best case scenario is that I will come away with a better understanding of genetics and what we can expect by way of help from the NIH.   I know that each researcher on the bone marrow failure team/DC team has reviewed Shelbie and Sam's latest test results.  These brain results are very intriguing because both kids have very similar brain abnormalities which strengthens the argument that we are dealing with a secondary genetic disease. I suspect that Spencer will fall into line with the other two, we just haven't dared look.  We've been so overwhelmed with his heart issues but we need to.  His tremor is getting worse and some other neurological issues are telling.

If nothing else, I am looking forward to the education and to get some of my questions answered. Maybe they will report on our total Exome testing and maybe, they will be able to tell me if I am a carrier of DC or if I have the disease!  I'm still not sure I want to know.




I titled this post...'Yet they were diligent' because I read that phrase today in my scripture reading and it made me think of my kids.  The words were in terms of people who wandered around in the wilderness and though they were lost, they never lost hope.

Late this afternoon, Spencer was busy going up and down from his room to the basement.  I didn't pay much attention to what he was doing but when I went down to make dinner, I ventured to the basement to see what was going on.  He had turned a corner of the storage room into an office for himself.  It's pretty rough but he couldn't be happier! He got some flyers distributed to businesses this week and made some hopeful connections with a new company in town.

Half the time we are lost in our own little wilderness but somehow, they remain diligent in moving forward, planning ahead, hoping a little more.  They inspire me more than they know.

Just some good reminders for the rest of whatever this week holds.


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