First week home

First week home

My sincere apologies for another overdue post on Kimbell.  Being home is really nice, except for that fact we were already extremely busy and now we have a house to keep up with!  A house that we had been gone from since mid May….

Last Wednesday I commented on how much she was throwing up, well unfortunately it went from bad to worse.  That evening she was sound asleep and threw up L this is the worst because she’s asleep and always on her back when it happens.  She ended up throwing up throughout the night and then we went to clinic.  Ironically K can throw up and wake up completely fine the next morning and be her normal self but Thursday that was not the case.  We tried waking her up at clinic and she just couldn’t come to, thus concerning all of us and getting a one way ticket to inpatient.  Mind you while I’m freaking out John is in Knoxville, TN working L Let me tell you, every time I might question something on this journey or forget how blessed we are God makes me clearly remember how truly blessed we have been and continue to be.  Before she even got to her room K started bleeding, now you can imagine I am really freaking out.  Like a light switch all of the GI issues just poof went away.  Ummm ok but thank you!!  K continued to sleep the day away and most of the night and was rearing to go the next morning.  All of her labs looked much better so she got GCSF and then was discharged.  Thank you Lord.  It definitely was long enough of a stay that we were able to clearly see the differences between Cooks and MN and boy are they different.  The rooms are so small so all of our MN BMT friends, we are spoiled and I mean spoiled.  K’s room was easily 30-40% of what we have on Unit 4.  There isn’t even room for two parents to comfortably spend the night!!  Cooks is definitely a children’s hospital and we thoroughly enjoyed pizza on Thursday, child life spoiling Kimbell, Sadie’s Dream, ability to order food at 8 PM, Starbuck’s and Chick-fil-a downstairs, and all the other goodies of a children’s hospital.  With all of that said the stay at Cook’s clearly reinforced our decision to leave our home and friends and trek across the country for the best BMT program in the United States.  At the University everything is research based, all the money (the majority) goes to research – leaving little for child life, and for lack of a better word life on unit 4 is very rigid.  You don’t appreciate that rigid program until you are gone from it and you have been telling everyone that will listen for 9 hours that your child is overdue for her meds all of that time.  It is a blessing to know that John and I made the right decision for our child when at the time no decision seemed to be right.

The best part of being home, other than my bed, Keurig, laundry room, and back yard for Stitch J well while those are great seriously the best part is seeing Kimbell smile, play and truly laugh with a few of her friends.  John mentioned on Sunday how he hadn’t seen Kimbell laugh like that in a very long time – truly precious moments.

While Kimbell has enjoyed being home, John and I have frantically been putting our house back together which means I have seriously neglected responding to my phone – sorry.  Monday K and I returned to clinic and got great news, she can actually go down on her CSA (antirejection med) so now she only takes 12 of those a day J but the best news of all is that her kidney numbers have been stable for the last two weeks!!!  This is wonderful and a prayer answered.  She is still on IV fluids twice daily but at least the kidneys are happy.

Thank you so much for continuing to check on K, praying for her, sending notes and cards.  Even though I am horrible at responding I promise you that your thoughts are not lost and they mean the world to all of us.  As a very dear friend told John on Thursday night, Paige gets quiet and doesn’t use her phone much when she’s stressed out.  Does she have me pegged or what?!?

Once again I am asking all of you to pray for someone who is very special to my heart.  I first met this family via the dad.  It was a few days into K’s chemo and there is a guy with a Dallas Maverick’s sweatshirt on, so what do I do – Hey do you live in Dallas??? J  Turns out they used to.  I then met mom and her and I are long lost twins, we are so much alike.  Then I got to meet the sister and brother.  This family is amazing and they have been through so much.  Sam is the middle child and was living a totally normal life when all of a sudden he was diagnosed with EPT ALL which is just a horrible diagnosis.  Long story short, he has had multiple heart surgeries, many many PICU stays and a bone marrow transplant all of this away from home.  We were all hopeful that the BMT would be the answer to many prayers, courageously donated by his sister J  unfortunately due to all of the wear and tear he was only able to go through a reduced intensity regimen and they found out last week that he had relapsed.  You can read about Sam and his journey at Caringbridge.org/visit/samlemar but more than anything he needs your prayers.

Best of luck to everyone at the OESCA National Specialty, we wish we were there!  Thank you to Linda Jordan and the Top 20 for supporting Kimbell and University of MN research for a cure.  It means so much more than words could ever convey.

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John & Paige