March 2016 – prayer request

March 2016 – prayer request

Things have been super busy around here, then again that is nothing new!  Kimbell continues to do well in regards to the transplant and now we are learning to deal with the long-term side effects – hearing, vision, neuro, endocrine… She continues to battle GVHD but it could be so much worse I feel horrible complaining.  As we were told she would get every bug that came to town she has!  I am learning what normal people do when their child is sick and I’m not sure I’m doing such a great job.  After two weeks of being sick I took her in and our pediatrician said you know you can bring her in sooner, right?!?  Oops.  Poor Kimbell started complaining that her ear hurt on Saturday, I told her to suck it up.  Well Monday night I hear her moaning in her sleep!  Boy did I feel guilty so Tuesday we go see the NP and she says “Wow!  I bet that does hurt!”  Yet another tally in the mom of the year award.  Needless to say Kimbell got ice cream after the appointment and once again was able to postpone her blood tests she needs to figure out her joint pain.

There are many side effects of a myeloablative bone marrow transplant but when you are looking at life versus death you don’t care too much about those side effects until you have to deal with them.  Ironically the things you didn’t pay attention to have a way of showing their ugly head.  Last week Kimbell had growth hormone testing done at the hospital.  This has turned into a huge deal since she isn’t growing.  It is so easy for me to say it’s not a big deal because I’m an adult and I’m not short.  I don’t think Kimbell was this stressed out going to or during transplant.  It takes 10-14 days to get the results which means they should be coming relatively soon.  She asks every day at least once a day if they have come.  If it shows she is deficient which is any number under 10 then we have to try and get insurance to pay for the shots which can take weeks.  If she is at 10 or above well then she is pretty much screwed in the height department.  So if you could please pray that she is deficient and insurance will pay for the shots we would really appreciate it.  Time is of the essence because she only has two years left before her growth plates close.  To give you an idea… they said she may not grow anymore, she is 4’8″.  She was supposed to be 5’8″-5’10” and with growth hormone replacement they are hoping she will be 5’2″-5’4″.  She also cannot start any type of hormone replacement until all of this is settled.  We would all appreciate your prayers on this 🙂

In other news she has been quite the social butterfly.  It has been so amazing and wonderful to see her meet and make new friends.  She is doing well in school and we have all been thankful for Science Etc. because she has missed quite a bit due to being sick.  We recently got to pay a social visit to her BMT doctor.  It was quick but she was ecstatic.  When we got in the elevator she said she was happy her pager went off because it didn’t give him time to ask for blood!  The weather has been nice and warm (minus the rain this week) so she has been learning how to ride a skate board and her bike all over again.  I haven’t seen her ride a bike in years so of course I was emotionally and she told me I’m embarrassing.

We are still trying to decide what to do for next school year.  The only thing we have decided is it is time to get out of our house and find a new one.  We need all the prayers we can get on this decision!  I think we have it narrowed down but to be honest I don’t have a clue.

Lots of love and prayers to all of you.  Not a day goes by that I don’t realize how blessed we are.  Our daughter has made it further than any medical expert could have ever anticipated and that I believe it 100% correlated to how much we have all prayed.  All things are possible with God.

Love,

P, K and J

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John & Paige