6 Months Post BMT and counting

6 Months Post BMT and counting

Really 6 months?!? already? only 6 months… well 6 months post transplant day and change, 7 since we left TX for MN.  Things are about the same.  She continues to lose weight, kidneys well they are old news, GVHD is better, depression and isolation check,  hip/knee pain check, immune system getting better double-check!  On the other hand I have been fighting something for weeks and she has been fine.  So incredibly exciting for us!!!

Since the new year we have been trying to adjust to this new life.  In some ways it is so amazing and blessed but we are also struggling in so many ways.  We have been watching our friends go to heaven, struggle through relapses, and celebrate milestones.  In many ways it makes Kimbell’s journey seem easier and then the crying starts or me pleading with my child to eat or drink and then well it is hard for us.  John started a new client and it is in the area!  Kind of, sort of, well it depends on your definition of area!  He is commuting to Plano, so while he spends 2.5 to 3 hours a day in the car but we get to see him every night which is beyond nice.  Kimbell started play therapy last week so we are very hopeful it will help.  The isolation is getting harder and harder to cope with.  She feels better so she wants to do things which is awesome but she is still very limited especially during flu season!  The other day she told me, “mom losing your hair is the easy part it’s when it is coming back in that is hard.  I’m not a boy and I’m sick of people thinking I am a boy.  Boys don’t wear big skirts and dresses!”  Seriously these are not things you see coming!

Last week Cook’s drew some of K’s 6 month labs for MN.  While the immune numbers are climbing they are still really low which is expected but they are better than they were and that is what matters!  As for isolation she won’t be getting out any time soon, they will recheck her numbers in three months.  Some other tests came back but I don’t really understand the significance of them or what it means.  These other numbers should be stable and they went down, most likely damage from the chemo.  Unfortunately Kimbell had to have a high toxicity myeloblative regimen and we are seeing the effects of this type of treatment.  Kimbell finally had her audiology appointment she had been begging for and she does in fact have some hearing loss in her right ear.  Hearing aids do not help with the hertz that the loss is in so they recommended closed captioning or head phones that connect to the TV.  Thankfully the audiologist also warned her of listening to her music too loud!  Her blood counts remain stable too.  Tomorrow more labs will be run and then her bone marrow biopsy will be done when we go to MN next month.  It is coming fast but seems like so long away.

Last but not least, Cook’s wants to remove K’s Hickman line since it is a source for infection.  John and I are extremely conflicted on this and MN was surprised too.  K is still on daily IV fluids, I think the hope is that if push comes to shove she will start drinking and eating….  We aren’t so convinced, I mean this is Kimbell and everything is on Kimbell’s schedule, not ours, not the nurses or doctors just Kimbell’s.  We were told it would be removed on Tuesday but we got a call from surgery for a consult for Feb 5th so now I’m thinking we have bought ourselves a couple of weeks.  At least I’m hoping so.  Her creatinine went up last week and considering we have gone from 13 CSA a day to one a day and it’s still high well…..

We hope you are all doing well and 2015 is the best year for you yet.  I know it is definitely an exciting one for us!

Love,

P, J and K

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John & Paige