Day 100 and more!

Day 100 and more!

Wow so much has happened in the last week.  I keep writing updates in my head but never get to write them on the computer!  Last week went well.  Kimbell’s counts continued to drop so by Friday she was in desperate need of blood and GCSF.  We got great news on Friday about her bone marrow.  Kimbell’s BMB reports have been 5+ pages for 10 years now so when they handed me a one pager it was more than surreal.  Completely normal marrow with 70% cellularity!!!  Post BMT that is great cellularity and we found out on Monday that it was 100% donor marrow.  Dr. Tolar assured us that the counts can tank especially in kids that have been sick as long as Kimbell has.  It could and most likely will take months for her counts to come up and although they may never be in “normal” range that those are just guidelines and you don’t need your numbers to be that high.  We were also informed that she would no longer get prophylactic IVIG because the immune system has to be challenged.  Talk about scary…   We celebrated Kimbell’s 100 day post-transplant by going for a steak lunch that K has been begging for for months!  We had a great time and it was sooooo good.

On Thursday Kimbell got to have her bear hunt!  The Sheraton created a scavenger hunt complete with a dart gun to shoot mama bear at the end!  She had a great time and really enjoyed all the cupcakes and gummy bears.  It was so hard saying goodbye to all these amazing people that have become like family to us over the last couple of months.

Saturday we started our trek home and arrived Sunday night.  Kimbell’s friend had decorated the garage door, front door and house with welcome home signs, banners, etc.  It was a feeling I am not sure any of us will ever forget.  We never thought we would get to leave on day 100 and it was extremely overwhelming for us to be home, all of us.  We also were blessed to have groceries for us.  Thank you thank you thank you!!!

Monday we went to Cook’s to start the second part of our journey.  The team is very nice but I think it will take getting used to as they do things differently from MN.  Kimbell was ecstatic to hear they don’t use N95 masks until she realized that it was nonnegotiable.  I sincerely underestimated the amount of time it takes to transfer care for a transplant patient.  Many hours were spent on the phone trying to get everything transferred.  Unfortunately not everything will be the same.  Kimbell’s IV fluids will now require a pump on a pole or backpack L She is not happy about that.  They also give GCSF subq but I think by her reaction Cook’s is going to do it through her Hickman!  K’s platelets had come up so that was great news but her white count was right above the threshold so they decided to hold the GCSF and see what happens – that is so hard for me!!  Monday night we had a home cooked meal for the first time in a long time from one of our friends.  Thank you so much.  John was able to have a great meal before he jetted out to work.  Reality of life has hit.  John is back at work which means he is back on the road, we are back in our home which is great but I had totally forgot we repainted and carpeted before we left so ummmm we don’t even have our light fixtures up, smoke detectors, or ummmm furniture upstairs!!  Needless to say my stress level is beyond high.

More 100 day results – CD15 is still 100% engrafted but CD3 is now only 73% engrafted.  I have an email asking how this is possible because I am so lost but all I know is it isn’t good.  Typically they would wait until day 180 to check this level again but due to the significant decrease in engraftment it will be checked sometime between now and then.  If any of you reading this understand this please let me know!!  It has us a wee stressed out…

Today Kimbell has had a rough day.  It started at 5 with puking and continued on the way to the dentist, on the way back from the dentist, on the way home….  Amazing in this day and age with all the drugs available she is still throwing up!!  She is so much stronger than me.  Tomorrow we go to clinic and check her labs.

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John & Paige