Day +4

Day +4

Well they warned us….  I honestly can’t complain because it could be so much worse but it is shocking how quickly you go down with a bone marrow transplant.  By evening yesterday we were asking for an increase in her dilaudid, in a 24 hour period we have gone up on her continuous drip 400% and she is still getting a bolus every 3 hours as needed.  The mucositis has set in and my poor baby looks so different.  I barely slept last night because she didn’t sleep well and then when she was sleeping I don’t know if she was having a new type of cluster seizures or if it is because her tongue is so swollen etc that she can barely swallow.  This continued into the morning and ironically it isn’t happening anymore which really makes me think it is a new type of seizure for her.  I got the impression that it really doesn’t matter what it is because there really isn’t anything they can do at this stage, fair enough I suppose but it still scares the crud out of me.  I was reading my “neighbor’s” caring bridge site – I mean seriously as long as we are here they are your neighbors! – anyhow her son has ALL so they have had a lot of chemo and she described the chemo for a BMT as a nuclear bomb.  I had never thought of that but it is a great analogy.  They give you as much chemo as they possibly can with the hope of not killing you because they gave you too much or not enough!  It destroys pretty much everything.  Thankfully Kimbell’s organs are doing well right now.  She is needing more and more medicine for various organs but we have heard the dreaded F (failure) word so it’s all relative!  I will say it was shocking to here the nurse say today that all the drugs are nephrotoxic, meaning they damage the kidneys and that is why they need lasix to help remove the fluid 🙁 I guess that is why poor K has gained over 6 pounds in four days and looks quite a bit different.

Anyone that knows John and I know that we are not the type of parents that brag incessantly about our child but one day she may read this, we read her the comments, and I want her to know how proud of her we are.  Coming into this we were scared to death, who am I kidding, we still are! Anyhow we had a conversation with her BMT doctor where he told us that we needed to get on the band wagon, not because this is what she needed but because Kimbell wants to live and wants to be normal and she is ready for this.  If we didn’t we would hinder her ability to survive this.  He couldn’t have been more correct.  The doctors are continually amazed at how well she is doing and how despite the fact it hurts to swallow she is still eating like a champ and taking her pills that can’t be switched to IV.  She is getting up, playing, plowing through this better than anyone could have ever expected.  We may provide a fun environment (her room is quite festive – thanks to all the contributors!!) but Kimbell it is your spirit, your faith and your will to survive that makes you so special.   It is and will continue to play such an instrumental part in your journey that no drug, doctor,  or anyone can give you.  You are an amazing daughter and we are soooo proud of you.  I pray that we have many more years to watch you so you can continue to amaze us.  Your fighting spirit is keeping us all going.

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John & Paige