Day 70 and some change

Day 70 and some change

Well hmmmm some good some bad.  The good, all of you guys that continue to support us, love us and pray for us.  The other good, John got out of the hospital Friday.  Actually that was great because Kimbell’s kidney numbers got worse so I was really at my limit.  Saturday I could barely get out of bed and had a fever, really I mean seriously????

So lets skip to Monday.  Well the wonderful news, Kimbell’s kidney numbers finally went down.  Praise the Lord.  The bad news, hmmm oh where do we start?  Kimbell’s white count went up.  That may in theory seem like a good thing but in reality it’s not.  The last time it went up on its own she had a massive infection.  This time she’s getting sick.  Wonder where that came from…  As a result of Kimbell’s t cells being nil she continues to get IVIG every two weeks, well that wasn’t communicated all the way so it was delayed until Monday.  Typically this would be a day where we snuggle, watch TV and chill while she gets her all day infusion.  Well insurance wasn’t going to have any of that.  Nope, you see Kimbell ran out of her anti rejection meds, you know the drug that keeps her from rejecting this amazing miracle courageous woman’s bone marrow.  That one.  So John and I spent from 9-4 fighting with insurance, talking to the doctors and pharmacist back and forth until finally we got an override.  The override is only good for 30 days…  At about 3 I found out that no the NP didn’t screw up the script for the antivirals, it was actually my insurance that refused to pay for 3 pills a day.  Apparently no one felt compelled to tell us this because we continued to give the drug 3 times a day…  So that battle started while battling the CSA.  Good news!  As of 2 pm today the Valtrax battle was won as well.  Thank you Lord because we really can’t take anymore.  The other not good news was her overall blood counts.  They continue to decline.  In August before her blood infection her numbers were spectacular.  Don’t get me wrong they are ok but not as good as they were and really not so great when you start comparing them to other kids that are as far out as we are.  We kept thinking they would rebound as we have seen them dip and rebound (not the white count) but no they just keep trickling down.

As for Kimbell, the great news is that despite her kidneys and her falling numbers (will come back to that) it does appear that we will still get to come home after Day 100.  I can’t tell you what a relief that is, we have been gone so long.  Yes mom and dad, I know you have been gone longer than us and we couldn’t have made it without you 🙂  The not so good news is we had thought she would get rid of her mask at day 100 and we had thought her counts would be good by day 100.  Apparently day 100 isn’t exactly what we thought it would be.  Yes most likely K will finally be able to eat her medium rare steak that day once her doctor has done his research and we procure it only from that one place.  This is huge because when you can’t have something you really want it and this is number 1 on her list for a while now.  BUT short of a miracle the mask isn’t coming off.  Tonight as she was about to go to sleep she was talking about day 100 and how she will finally feel the wind on her face, what an incredible observation, and for people to be able to actually see her smile.  This absolutely broke my heart.  I had to tell her that no it won’t be day 100 because even if her tcells do come in, it takes 2 weeks for the test to come back.  Furthermore, as I was talking to our nurse on Monday about her declining counts, I found out that BMT is just so much more complicated for our kids.  Well ya we knew that, I mean we walked into this with pretty crappy odds but I thought that was because of the chemo.  What I learned is that our kids have had actual structural changes in their bones where the bone marrow lives so that while she is a hundred percent donor it takes a lot longer than normal BMT patients for their counts to normalize.  OUCH!!  Kimbell is sooooooooooooooooooo sick of isolation and to be honest we aren’t very good at isolating her.  We take her places with her mask on, make her put hospital gloves on if she wants to touch stuff and have lots of sanitizer but we still take her to a lot of places.   Please pray for her patience, acceptance, understanding and that this whole isolation thing doesn’t break her will.  She is going stir crazy.  So if you are asking yourself why in the world we take her places and would risk her being out, we don’t take her during “rush hour” and to be honest the will to live is so incredibly powerful.  If I remember one thing her doctor said to us before transplant it was that she had the will to live now and we needed to move now.  If we didn’t enable that will and get on board it would be detrimental if not fatal.  If we kept Kimbell locked in this hotel room and she only went to the hospital well that will, that spunk that has kept her fighting for over 10 years it would be gone.  I also trust that God leads John and I to make good decisions….

Now that I’ve talked your head off, hug you families tight and never under-estimate a good night’s sleep. 🙂  Lots of love and prayers to all of you.

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John & Paige