November Notes

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OK, so it's been a while. A lot has happened, most notably a week away from the hospital that saw Jacob at his absolute happiest...ever. He cackled at the leaves blowing, yelled when the mailman drove by, and gazed out the car window when riding around town with wider eyes than he's ever had. He was out for Halloween, when, dressed as a spider, he joined hundreds of kids at mom's school for a huge parade. He was a bit overwhelmed...going from isolation in the PICU to riding down the halls of a school that is lined with hundreds of excited, costume-clad kids was a huge step for him.

Jacob's body was able to maintain its levels (hemoglobin, albumin, white count, ANC, platelets) without transfusion for the entire time away from the hospital. We came back on November 5th to start round two of chemo, and with that now behind us we're just waiting for his levels to rebound so we can go home until mid-December. Mechanically speaking, the chemo wipes out Jacob's marrow, taking the disease with it, so when the marrow rebuilds there is less (if not zero) disease once the body rebuilds. While there is a chance Jacob could achieve remission after this round, we're trying to remain realistic (but VERY hopeful) and plan on being back in the hospital for round three, which will last through Christmas. For now though we are infinitely thankful that Jacob will have Thanksgiving with family, and we will be home to celebrate his second birthday on December 7th.

Jacob has been very happy and playful for this entire stay in the hospital. The week at home really erased a lot of his anxiety about medical staff, as he is much happier when the doctors and nurses come into the room vs. his time in the PICU. With the intensity of his treatment down there, as well as the intubation, he was not very receptive when doctors would observe him back in Septmeber and October. Now he gives out a lot more smiles, especially to the nurses he sees most often.

A very cool thing that they allow us to do is donate platelets that Jacob can use when his levels are low. We plan on regular visits to the hospital blood bank for this purpose. As adoptive parents we can't say enough how cool this is for us. Although you can technically donate every three days, dad's first visit didn't go so well. With two blown veins and quite a bit of bruising, it looks like it will take an administrative appeal to allow a repeat donation anytime soon. We will need to appeal a rule that prevents repeat donation for eight weeks after such an occurrence. The good news is that before arm #2 went bad, they got just enough platelets for Jacob to be able to use them.

They had a "music together" sort of gathering on the floor last week where kids could grab an instrument and contribute to a mellow jam. Jacob was more interested in dismantling the xylophone than playing it, but it was a start. He enjoyed watching the other kids play, and didn't like it when dad joined in on shaker. Hopefully there will be more of those gatherings. Meanwhile he's been doing his "hand dance" in bed while watching everything from Elmo to Barney and Thomas the Tank Engine. Very cute...we'll try to get it on video...

So here we are...still...living at the hospital in Hackensack. WHAT MONTH IS IT AGAIN???