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May 05-11

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Its been a while since we’ve updated – so much has happened in the 3 weeks we’ve been home! It was such a joy to get to share Isaac’s welcome home party with so many of you who could attend and who sent messages!  There is so much to say about that day (certainly more than 2 words!!) and its already late so that will have to wait for another time… 

But we have some good news to share – Isaac’s final Bone Marrow Biopsy results came back Cancer Free!! The full expectation was that this final biopsy would be cancer free and confirm that Isaac’s continued remission, but its always wonderful to have the results in hand.  This will be the last direct bone marrow sample taken, and it should all be simple blood tests from here on monitoring his health.

With confirmation that no more treatment is needed, the doctors are ready to remove Isaac’s central line this Friday.  The central line is the last obvious reminder of the hospital, and having it gone feels like closing the book on treatment.  It will certainly be nice to be done with dressing changes and keeping the emergency hemostat handy at all times.  The removal is a short outpatient procedure - Isaac will go under for about 30 minutes while its removed and walk out shortly after. 

The one downside to removing the central line is that all future blood tests will require “pokes”.  Isaac isn’t too worried about it – a promise of ice cream on blood draw days has done a lot for his outlook!

Since the central line breaks the skin barrier it creates a very high risk of infection, so the number one rule has been to keep the central line dry.  Isaac hasn’t been underwater, and has hardly even been wet, for 7+ months since getting the line placed!  We aren’t sure what the recovery time will be, but we plan to surprise him with a fun place to go swimming as soon as we get the green light.  Isaac is eager to simply splash in the tub again!   

So much has changed in the last 3 weeks that its hard to even know where to start with a general update.  Isaac is adjusting well to being home – being back on the family routine.  The screen time embargo has been very successful in detoxing the TV, Youtube, and video game habits picked up at the hospital.   Abraham has grown up a lot since the start of treatment and its been wonderful seeing Isaac and Abe being buddies chasing each other around the house with swords and nerf guns – I’m not sure who has more fun! 

We are getting the house back in order – Emily made the big push to sort through the piles of hospital bags and boxes.  Even after 2 weeks its nostalgic going through the detritus of another life.  We have tried to mark all the books and games and puzzles that people have given Isaac with the name of the gifter and a note about Riley.  As they go onto the shelves I look forward to the years ahead when we can continue to re-discover those notes and remember the love we were shown through this time.

Anyway, this was supposed to be a 15 minute update and here we are 2 hours and 500 words later!  Like Isaac, I’ve been trying to get back to a normal schedule and avoid these late nights, but I do miss getting to share with you all. The last 3 weeks have been some of the very best and I wish we could share more of the little joys!

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