Counting down….

We had clinic on Tuesday the first.  Labs look great and Gregory has been feeling great. 

We are getting ready to leave this weekend.  Dad is home, recovering from triple bypass.  I  knew he wouldn’t be able to get out to the Water Retreat before we left so Gregory and I stopped by Mom & Dad’s.  It’s the first time Gregory has been to their house since diagnosis, February 2009.  We hit the house about noon and I figured we would stay for a few hours and head out.  Gregory was having such a great time, we stayed a little longer than expected.  The weather was beautiful.  Gregory was all over the place, getting into everything.  Walking down memory lane with all of his old toys.  Jumping from one thing to the next.  Next thing I  knew, it was time to get the sibs.  They spend Tuesday evenings with Mom.  We all piled into Mom’s car and headed to school.  I got to show up at school to get them, they were quite surprised.  We picked up Little Caesar’s on the way back.  The kids chowed down on pizza and then played for a few hours.  Everyone had a really great time.  We headed out about 6:30.  Gregory crashed in the car before we were even six blocks away.

I should have known better.  Another lesson reinforced.

He had a very quiet day on Wednesday, he hardly moved from the sofa sleeper.  Quiet.  Occasional belly twinges throughout the day.  By evening he had a headache, more belly aches and started heaving.  Yesterday was just too much.  He played hard!  I really hope this doesn’t last beyond now.  I hope he wakes up in the morning, refreshed and ready to roll.  Crap.  Should have known better.  It needed to be a much shorter visit.  He has been feeling so great lately, that I let my guard down. 

We received a phone call from clinic, today.  His sirolimus level was low.  2.0 in fact.  Which is really strange, considering that we raised his dose last week.  I’m hoping it’s a fluke and not malabsorption.  We go in first thing Thursday for a repeat blood draw to double check his level.  We also reduced his prednisone.  He has lost a few pounds, he is currently holding at 17.6kg.  We are decreasing from 20mg to 17mb.  A milligram a kilogram.  Let’s hope it’s a subtle difference and he doesn’t experience any GVH symptoms.  

I’ve been walking down memory lane.  Tuesday marked the beginning of his transplant experience.  Gregory was admitted June 1, 2009 for conditioning with transplant on June 11, 2009.  We will be observing his Transplaniversary while we are in Seattle.  We also get to submit our info for his donor to have and hopefully she will want to exchange information and provide us with hers.  I’d like to let her know, as best I can, how much her selfless gift has meant to us.

I finally was able to get our schedule for next week.  It’s not as crazy as I expected it to be.

10:00  Registration
10:15  Blood Draw
11:00 Pharmacy
11:30  Nutritionist
12:45  Study Coordinator
1:15  Meet with the RN
2:00 Meet with Joan Suver, PA

9:30  Bone Marrow Aspirate with Sedation
1:00  X-Ray and Something else regarding his bones

12:00  DEXA Scan to check bone density
1:00 Oral Med (AKA Dentist Plus)

7:00 Check-in for Upper GI scope with sedation
2:30  GI Doc
3:00  Opthalmolgy

2:00  Vaccines
2:45  Conference with Dr Woolfrey

I find it funny that they scheduled the beginning of his vaccinations.  He is no where close to being ready to be re-immunized.  He is still needing IV IgG about every 4-5 weeks.  It’s part of your immune system and he needs to making enough of his own before immunizations.  Otherwise his body won’t be able to do anything with the vaccines.  I called today and discussed a few things with the nurse.  Got a few questions answered and had a chance to chat about Gregory’s specific sedation needs.  He is really sensitive to sedation and we have two for this week.  He can’t have Versed or Propofol  (Milk of Amnesia).  Last time we used Ketamine and Fentanyl.  They worked well, but he was high for quite a while and was tripping.  I will be certain that anything he watches before these two sedations will be quiet and calming. 

Yes, I am a walking reference manual of medications and tests.  They don’t have an ECHO or EKG scheduled.  That was part of his pre-transplant and before leaving Seattle testing.  I  also found out that they will not be looking at his growth hormones.  We will discuss it more, when we get there.  I guess it makes sense to not mess with it, until he is showing obvious signs of lack of growth.  It involves two days of testing.  He is given drugs and they draw blood samples and timed intervals to determine his bodies reaction.  I’m glad that Wednesday and Friday are quiet days.  He will need to time to chill after his procedures.  (Note to self:  Make sure they stress dose his hydrocortisone for these procedures!) 

I’m also counting down the days to the placement of his port.  I cannot wait for him to have a real bath.  July 1!

Alright, this is mainly info for posterity.  I  don’t have anything witty or intriguing.  Just a lot of list making, checking and double checking.  Making sure that we will have everything we need and get everything done that needs to be done.  My mind will quiet as soon as the rubber hits the road.  Very, very, very excited to get to Seattle.

Posted via web from MindiTheMagnificent


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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