Day 22 on the inside

Well here we are at Day 22 with a child who is still not producing wbc or red blood cells or anything really. Apparently there was a family before us who brought up the CMV connection to blastoma type cancer tumors becoming resistant to treatment (by a whopping 75% increase in resistance to treatment)…and CMV positive blood products given to a CMV negative patient…with a blastoma type tumor cell.  Ya.  So I insisted on tests and fortunately this is going to happen.  I appreciate being heard.  The next thing to happen is a discussion – I requested a conversation about an early stem cell transplant.  As in the next couple of days.  So the good thing is Naomi is on it.  She’s our superstar negotiator nurse.  She makes it happen.  She’s going to coordinate a meeting to discuss this as a potential treatment.  The thing is the conversation has to happen very soon as it takes time to prep and to make sure she doesn’t get sick.  So now…being in pre transplant mind…we will again need to isolate up.  Which isn’t much different but might mean I won’t get to hug my little bug for a while.  Poor Holling, it’s a good thing Brian and Holling have each other during this.  Image


It’s tough on the little dude too.  He had his 4th birthday with some “safe” (not sick) friends of ours and after he said to his dad “Daddy, I had a good time on my birthday but next time can we invite some kids to my party?”




One thought on “Day 22 on the inside

  1. Hi guys I saw that picture of Ruby! She looks like she is doing just super AWESOME!!!!! I am really excited for when me and my dad come and visit witch is probably in a couple weeks!!!!!!!!!!!!!!!! I’ll talk to you super awesome people later! Bye bye

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