Kimbell & the Terrible, Horrible, No Good, Very Bad Day

Kimbell & the Terrible, Horrible, No Good, Very Bad Day

Ok so it’s the name of a book and movie replaced with K’s name.  When we got in the elevator after clinic I looked at K and said “well that was a crappy appointment” her response was stronger than mine and that was the image that instantly popped in my head!  Since it is 4 in the morning and I have a massive migraine my apologies ahead of time if I once again use totally the wrong word like infamous!  Thanks dad for pointing that out, still feel like an idiot!

Today was one of those days, again, where you realize you really have no clue what is going on with your child because a mac truck just hit you head on.  The good news, K is officially off CSA!!  That is great because is it toxic especially to the kidneys.  Her numbers aren’t coming down as much as we would like but they seem to have stabilized and we are holding her additional fluids to see if she remains stable.  We return on Thursday and if numbers are the same will check again on Monday and then potentially rule on whether or not the Hickman line can come out!

Counts – platelets and hemoglobin came up so that is good but her ANC was just above the cutoff for more GCSF so we go back Thursday to check her counts again.  They are testing for additional viruses as a virus could be causing her counts to be down.  It could also be GVHD or she could be losing the graft.  Those were hard to swallow to say the least.  We were going to wait until we went to MN to draw engraftment labs but given the situation they drew the labs today and will be in MN in the morning.  We are hopeful that those results will be in by Friday.  If not John and I might very well lose our sanity over the weekend.

Weight – Let me preface this by saying K is the strongest kid I know, but lets face it all of these kids are.  That being said she has always had a major fear of things in or around her nose, fear is truly an understatement.  Today when she got on the scale I literally felt ill, I think I would have felt better if I had just puked and gotten it over with.  K lost 1.4 kg, just over 3 pounds, since last week.  The plan as of now is to get her into GI ASAP, usually it takes 1-2 weeks but they don’t want to wait that long (lovely).  GI will run a zillion labs and do an upper endoscopy and  a lower endoscopy.  How in the world they will do that prep is beyond me b/c she isn’t going to drink it!  It just hit me they will throw a tube down her that is so not good.  They are specifically looking for GVHD but will test for viruses again and anything else.  While she is sedated BMT wants them to put in an NG tube and start continuous feeds.  They said it could be her pancreas, GVHD, viral, maybe severe gastritis and sometimes post transplant no matter what you can’t gain weight without additional support.  I asked why we couldn’t do TPN again and they said it is hard on your liver and since it is in good shape they don’t want to mess it up.  Every single person has their own personal fears.  K is less afraid of dying then she is of an NG tube.  I know so many cancer kids have them and we have been blessed for her not to have one but this is such a hard pill to swallow.  During transplant they told her during the worst of it if she couldn’t get her pills down and they didn’t expect her to get them down during the mucositis they would put a tube in to get the meds down that didn’t come in IV form.  She was in so much pain but took her pills no matter what.  We were all so amazed and proud so here we are almost 7 months later and well….  Through everything she has been through I have never seen her this upset, stressed out, and just I don’t know what the word is.  John told her tonight she is almost done she’s at the finish line to which she responded, “dad you’ve been saying that for months.”  So much for that pep talk.  Please pray they can figure this out without putting an NG tube in, it could be so much worse but when it is your personal nightmare well it is just a nightmare.  K is so grown up in so many ways but she’s still a little girl.  When we walked out of clinic she told me she needed to talk to Dr. Tolar before anything happens, and not on his cell phone b/c it is hard to understand him!  She put in her request to him tonight.  Before she went to bed she said that if he says this is what is necessary then she will do it but I’m not so sure.  She has always said she would pull the tube out, that we can’t force her to keep it in.  This was also followed by the fact that she wants to be in a coma if she has it.  Like I said so grown up but still a little girl.  She is fully aware of what a coma is but thinks the side effects of a coma are not from the coma but from sepsis since that is her only experience with a coma!  I about fell over when she made that comment!!  As a dear friend said tonight, thanks for letting K and I escape to your house :), she sees a lot of bribes in my future.  It’s pretty bad when the people at the Disney Store know you!!!

Please pray that they figure out what is going on.  Please God let it be something that is relatively easy to fix.  Please pray her fighting spirit continues and to not let her feel defeated.

Thanks for listening.  If you feel like sending her a note of encouragement, a card anything it would mean the world to her.  You can find our address can be found at      http://kimbellstevenson.com/?page_id=227

Love,

P, J & K

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John & Paige