Day 24 – Building a Routine:

It is definitely good to be out of the hospital and back at our temporary home here in Seattle. Idan has spent the last few days enjoying his freedom from the tethered IV pole and the frequent vital checks he had in the hospital. He has been getting a lot better at taking his oral meds and is very close to meeting his daily oral liquid intake goal of 50 oz. Amanda and I still have to hook him up at night to an IV pump that gives him extra fluids and magnesium and then unhook him and flush his central lines in the morning. We are all looking forward to the day we can switch over to oral intake of magnesium and not have to do any nighttime IV fluids. Idan has told us that he plan for clinic Monday is to ask the doctors about this 🙂

We are on a twice a week blood test and clinic schedule, which ends up always leading to more visits as things come up from these tests. Today, for example, we were supposed to only have a blood draw at 7:30 a.m., and then Idan enjoyed a well-deserved freshly baked Top Pot doughnut in the Marina/Lake Union area. Just as we were heading home we got a call from the clinic that the results from his morning blood draw showed that his ANC dropped down to 1000 (it has been trending down for a few days). So we made a U-turn and headed back to the clinic for Idan to get a G-CSF shot. This shot will help stimulate growth in his bone marrow and hopefully get it to trend back up again. This is quite normal at this stage and not anything they are worried about. Idan, being the trooper he is, did not even flinch during the shot in his arm, and we were back out again in no time heading back to play more doctor at home.

The last few days have been very fun for Idan, with his Uncle Yitzi visiting for a couple of day and joining us on all our adventures and today with the arrival of two of his aunts for the weekend. On Thursday we took advantage of the good weather and went out to Discovery Park for Idan to see the beach and light house. We try to find places that are not crowded and don’t present other risks for his very week, almost non existent immune system.

As always we are very thankful to all the support Idan’s army has shown us in the past few weeks. Today, Idan came back from his unexpected shot at the clinic to a big surprise in the form of two large boxes from Amanda’s co-workers at Sheppard Mullin back in NYC. These thoughtful toys and activities (and some pampering items for us) will keep him busy and us sane during the long days ahead.

We are checking Idan’s chimerism next week, which will tell us whether he has engrafted with donor cells or not (the best measure of the transplant’s success). We expect results by Thursday or so. We will keep you all posted!

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