Protein tyrosine phosphatase, non-receptor type 11 (PTPN11)

Man Gregory was GREAT today.  Yesterday he fell asleep around 5:00pm and slept until Midnight.  Was up for two hours and then slept until 9:00 this morning.  He was wiped out.  Once he woke up this morning, though, he was a rejuvenated kid.  Happy, loving and easy going.  He also had a great appetite today.  Yay!  We went in for counts only.  We were in and out within 30 minutes.  A phone call this afternoon reported:  Hematocrit ~ 27, Platelets ~ 22, White Blood Count ~ 21, Blasts ~ 0.84.  The new chemo is working already.  Bringing down his white count and blasts.  Keeping everything in line.  No transfusions this week!! 

I did have my first experience with waking up sobbing.  With the remnants of a very vivid dream.  Not a gloom and doom, dream.  I remember exclaiming “My child has LEUKEMIA!” and bursting out in tears.  I woke up sobbing and couldn’t stop.  Thankfully Gregory slept through it.  I have a feeling it won’t be the last time, either.  I  have to admit that I  have not expressed much through tears.  I haven’t broken down with uncontrolable sobbing.  It’s not how I roll.  Analyzing, talking, writing, learning.  That is my modus operandi.  Sharing.  Community.  Thank you to all of you have made this possible for me.  To express myself and work through this horribly awful part of our lives.  I found myself getting choked up today as I was doing mundane tasks.  Vaccuuming.  Laundry.  Preparing a meal.  We are quickly approaching the apex of this roll coaster ride and the descent is unknown.  Will it be easy squeezy.  Will it make these last three months look like child’s play.  Don’t know.  Won’t know until it’s happening.  I’m prepared for the worst, expecting the best.  It’s the most I can do.

I’ve been wondering how much I need to prepare Gregory.  He knows we will be going in the hospital on Monday.  I  think that is all he needs to know.  He is entirely too young to understand or ‘get’ anything else.  We’ve been talking about what he wants to bring to the hospital.  We’ve been reviewing the menu.  Stuff that is important to him and he gets.

Dad is stopping by tomorrow for a visit.  Mom will be here sometime on Sunday.  Time is flying.  MONDAY.  MONDAY.  MONDAY!  Holy cow.  We are really doing this.  This is really happening.  There are moments when this feels so flippin’ normal.  Moments when it is so surreal. 

I’m hoping to find a local photographer who will come and take some black and white shots of Gregory, as he is having his transplant.  Even though the moment itself is rather anti-climatic I feel the need to document and immortalize it.  Not with my cheezy snap-shots, either. 

BTW:  PTPN11 is the gene mutation that is the cause of Gregory’s Juvenile Myelomonocytic Leukemia.  In case you are an information freak, like me.  Here’s more from Wiki on PTPN11.

Time to sign off.  ’til later, gotta jet.

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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