Day 33-37: Wishing you all a very happy holiday season!

This is the first Thanksgiving (and Chanukah) that Akiva and I have spent away from family, but that didn’t stop us from enjoying good food and company.  Two years ago, we joined the Jaffe side for a day of playing with all our nieces and nephews, and I had a little baby bump.  Last year, all three of us joined the Zablocki side for a feast at Akiva’s brother’s house, and baby Idan wore a cute (ehem, scary) black skeleton onesie that was a big hit with all his cousins.  This year, we Skype’d with everyone on both sides from Seattle, and even lit Chanukah candles together.  Later, Akiva and I enjoyed a surprise taste of home, quite literally, when the UPS delivery man knocked on our door carrying a large box from Zabar’s, our absolute favorite market in Manhattan.  Next year, we hope Idan has a brand new immune system that is fully functioning so he can sit at the Thanksgiving table, play with his cousins, and be spoiled on Chanukah by his grandparents and many aunts and uncles.  Until then, we are very grateful for modern technology!  We hope you all have been able to enjoy good food and time with your family this weekend, and wish you a very happy holiday season.

On the medical front, it’s been thirty-seven days since Idan’s transplant, yet we still have a ways to go.  As you may have read from our last post, the first chimerism test results (testing whether the new cells coming in are the donor’s or Idan’s) were inconclusive.  We are repeating the test on Monday, with the hopes of having results back by Friday.  In the meantime, we have spent much of the last ten days in the outpatient clinic.

There are 2-3 scheduled visits per week to draw blood and see the attending, mid-level provider, and nutritionist, and then there are the unscheduled visits, which are more frequent than we expected.  Just to give you an idea, one day, we had to rush to the clinic to change Idan’s dressing over his central line when his IV fluids leaked over the bandage.  We spent a Saturday morning in the hospital because there was a miscommunication with the pharmacy and we did not get enough IV fluids to give Idan the night before.  And, we spent most of yesterday at the clinic because Idan was having some stomach issues (we’ll spare you the details), which seem to have resolved once we took him off oral magnesium.  We must call and/or go into the clinic for every rash, elevated temperature (100.3 or above), vomiting or diarrhea, and at any sign of infection of the central line.  In a way, we are blessed to be so busy because it helps keep us from stewing over the chimerism test on Monday!

Nonetheless, Idan is still doing remarkably well, and is a very happy silly little boy.  It shocks us how amazingly well he has coped through the hospital stay, and now the almost daily visits to the outpatient clinic.  He makes the most of it, and smiles, laughs, and tells jokes the whole time.  This Thanksgiving, we are thankful for Idan’s army and all it has done to support and encourage us over the past several months, we are thankful for Idan’s continued health and, most of all, we are grateful for Idan’s spirit.  He brightens every day, no matter how bleak, and keeps us all smiling and laughing through it all.