Thursday, October 10, 2013

Maybe not........


Last Sunday I asked Parklen as I loaded him in the car...."Are you excited to go to the hospital?"  His reply was heart wrenching....."I do not want my hair to fall out, and I am a little scared but I am very excited to play with my brother." 

Leave it to Parklen to wait until the day he checks in to the hospital for Chemo to spike a high fever.  That's right, the day OF.  I should have been expecting it, after all he has spent five years proving that he is not a typical case.....or even close.  In fact, I mentioned to the doctor last week how amazed I am that all of his testing came back good....with out a hitch. 

And so, last week I wrote about the anxiety of checking in for Chemo.....talked about how we were getting ready to start this new journey.....well maybe not.......not just yet anyway.


He had more than a few fevers this week.....
Which resulted in five days spent in the hospital.... and NOT starting chemo.  In turn, pushing everything forward a week.....

The thing about Parklen's chemo regiment, is that they are trying to bring everything that is in his bone marrow down to zero.....making room for his brothers donation.    So, of course they have to rule out any infections before breaking him down like that.....turns out it was probably just his disease.  The problem was, we didn't know.  We could not start chemo with a good conscious.  The doctor looked at me right in the eyes and said, "If we start this and find out after the fact that he has an infection, you will probably not be bringing your son home."  That's enough to make me agree on waiting. 

After Parklen went the given time with no fevers, we had a choice.  Stay in the hospital and wait to restart at the beginning of the week.  Or go to the apartment for a few days and have him readmitted on Sunday.  I left the final decision up to Parky.  I knew that going to the apartment would be more work on my part, more stress probably too....tyring to keep him free of germs, taking all of his care onto my shoulders again...but I also knew that he is going to be in that hospital for a long time....and we don't know exactly how long.  I knew that a change of scenery, a chance to sleep next to his brother, a little bit more space and some freedom from the whole hospital scene would be good for his mind and spirits.

Tonight I am typing in my apartment bed, I have a tiny girl sleeping next to me....and I can hear two small boys whispering and giggling in the other room.  Although I am sad that our schedule has changed, I am happy for where I am right now.

The hardest part of it all is the mental pep talk it takes to convince yourself into driving your five year old son to Chemotherapy and inevitably a transplant.  The very emotional toll it takes as you check him in to begin a life changing process...the thoughts you have, the fears you see....the.....everything.  It is a terribly hard situation.  I have to do it again.  On Sunday I will drive my smallest boy back to the hospital....I will go through the motions as I did the week before...I will put on my brave face....I will smile.  Inside I will pray my heart out......

I was speaking to Parklen's hematologist this week about the devastation of this set back....he said something to me that has helped me to sleep a little easier.....he said, "In a few years, when Parklen is better and your life is filled with a ton of stress from other things...and your biggest worries are soccer practice and the forth grade play and average every day things, you will look back at this time and a week will seem so small."  he is right.  I have filled many moments the past few days with day dreams of such a time......My heart cannot grasp the very joy that will be found in the "average every day things."  Be so thankful in your "average."  Praise God for your "every day things." Somewhere, there are people praying for such......I happen to know a few of them myself......

1 comment:

  1. I sit here at my desk watching all the parents dropping off their kindergarten and 1st graders and I wish you were one of them. I will rejoice on the day that it is and until then I will pray for continued strength, faith and peace for you and your husband and most especially Parklen. May God bless you and keep you, may His face shine upon you and be gracious unto you. Shalom, Sally oban

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