Today’s word of the day? Different.

No more ParaFlu!  No more ParaFlu!  Which means we can proceed as originally planned.  Provided everything goes smoothly. over the next two weeks, we will begin Chemo June 2, with transplant the evening of June 10.  The bone marrow will be harvested from the donor on June 10, transported to us and transfused via IV in the evening.  I guess it is usally about 10:30 at night.  The transplant itself is rather anti-climatic.  It’s a bunch of cells in an IV bag, gets attached to his central line and there you go.  The cells enter the blood stream and by the magic that is our bodies, they find their way to his bones, call it home and go to work.  The process is not immediate.  I believe it is around day 14 (transplant is known as day Zero.) we will know if it is starting to engraft.  Someone correct me if I’m wrong.  The details are escaping me, now. 

Today was blood counts, a dental exam, physical exam, nasal & rectal swab and some RN teaching time regarding his new central line.  Oh yeah.  Platelets, too.

Counts:  Hematocrit = 28.  Higher than I thought it would be.  Especially based on his mood for the last 24 or so hours.  Platelets = 27.  While they are not at transfusion level, yet, he is having his new central line place tomorrow and they will not operate with his platelets at that level.

Dental Exam:  Gregory had 8 crowns and four caps place on March 25.  The crowns are stainless steel, standard pediatric practice.  The crowns are not made and fitted specifically for each child.  They usually are too large.  I guess this is the case with Gregory.  Which means that his gums are swollen and irritated.  Perfect grounds for infection and sores.  Which means we have to really step up the dental/mouth care.  He hates it when I brush his teeth and the Peridex Mouth Rinse has alcohol in it.  His gums often bleed, too.  I also NEED to start flossing.  Gawd knows how I’m going to accomplish this.  Yet, if I don’t, it means a potential serious infection.  CANNOT be having any of that.  There is also a differing of opinion between the transplant team and the dental side.  The transplant team doesn’t want us to brush if there is bleeding.  The dental side wants us to continue to brush so there is not more severe bleeding, later on.  I got it.  Brush his teeth.  Period.

Nasal & Rectal Swab:  Sound bad, doesn’t it.  Actually is was just a brush with a Q-Tip to the two areas.  Easy squeazy.  They do this to determine what kind of “stuff” (aka: Flora) Gregory grows as just part of his ecosystem.  They need to know, just in case any of it starts to grow out of control, they will know what kind of meds to give him, based on what he natrually grows.  Cool, huh?

Physical Exam:  No real changes.  His spleen is still enlarged.  As are his lymph nodes.  The results of his BMA reflected the same information as the previous two.  No marked progression, either.  We did not have nasal swab results, at this time.  Dr Kutny called us at 5:20 pm, while Gregory was receiving his platelets.  It was a huge sigh of relief.  Things can continue to progress.  No more limbo, please?

RN Teaching:  Man, they do things different.  Dressing changes are so simple.  So is shower time.  I DO NOT HAVE TO COVER HIS DRESSING!  I place this stretchy plastic stuff around the end of his line, to seal off the cap, and we are solid!  No more sheets of adhesive to remove everytime he gets bathed!!!  He thinks it’s pretty cool, too.  “You know how to do that, Mommy?”  I will have to care for his line dressing, post surgery.  The first time, we were inpatient.  I did not have to do the immediate dressing care.  Something new.

Platelets!  Another shout out to having a rare Leukemia.  Since we receive our care at SCCA, instead of the Hem/Onc clinic at the hospital, transfusions that run into afterhours are done at Seattle Children’s.  Back HomeHome, the clinic is attached/one-in-the-same as the Peds Onc Unit.  If tranfusions “hang over” into afterhours, the unit staff takes over.  HomeHome is so slick.  I guess it would be here, too, if we didn’t have a rare Leukemia.  We headed over to Seattle Children’s for a 5:00 transfusion.  First on the agenda was HAM.  Gregory was dying for ham and kept asking for it over and over.  Here’s the thing.  He has already been started on the Immune Comprimised Diet.  HE CANNOT HAVE DELI HAM, UNLESS I BRING IT TO STEAMING, FIRST.  I thought he could have a ham sandwich from Arby’s, but I wasn’t sure and I have no idea where I would find one in Seattle.  Then I though that maybe Jack In The Box might have a hot ham sandwich of some kind.  AND I knew where the one on 50th is.  We headed over there and, nope, no ham.  Luckily Gregory had forgotten his fixation on ham and happily requested a “Hamburger with Cheese”.  I ordered myself some tasty Moz Sticks.  Low and behold Greogory LOVED the Moz Sticks.  I gave him one and finished the rest.  He was devestated that they were all gone.  I promised we would go and get him some, on the way home.  I can’t remember extactly when we got out of Seattle Children’s, I think it was around 6:45.  We are leaving Jack In the Box and Gregory is asking about his sticks.  “Can I have ALL of them, Mommy?”  Me:  “Yes, darling.  You can have all of them.”  Gregory:  “Really?  Mommy.  You are the BEST Mommy.”  He was so pleased to get to have all of them.  We got back and settled.  Guess how many he ate?  One.  Figures.  It was so worth it, though.

We need to be at Seattle Children’s at 8:45, tomorrow, for his central line change.  The pre-surgery instructions included washing him neck to toe with Hibiclins.  Strange.  They are extremely cautious.  I’m glad, it’s just different.  Again.

Last night I had a very vivd dream about moving into the BMT apartment, here at Ronald McDonald House.  There is a transplant family from HomeHome that should be going home very soon and I keep hoping that RMH will move us into the apartment as soon as it is available.  Simply for convenience reasons AND it would be nice if Gregory got to see it before being admitted.  So he had an idea of where we were going, post inpatient.  I don’t want him to be too displaced by having to go to yet another new location.  *shrug*  We will deal with it as it comes, I’m just manifesting a better story.

This is so wordy and yet really doesn’t say much.  Alot of information, though.  Maybe I’ll have time for something different, later.  I think I need to keep a small notebook handy.  I think of things I want to journal about ALL day long.  I am constantly journaling in my head.  Especially during “quiet”, non-brain times.  It’s a constant dialogue with all of you.  It’s the main way that I stay clear and sane.  It’s late and nearly an hour later.  I should start to wind it down. 

*Fierce squeeze* to each and everyone of you.  Yes, that includes you.  You, too.  The one trying to hide in the corner and look from the sidelines.  You are not on the sidelines.  We are all front and center.  Thank you for being with us. 


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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