What a long few days it has been! Wednesday was another stem cell harvest day. We were going to do one Tues, but his counts were so low that we just skipped it. Thurs we had to report in at 7am for anesthesia and a bone marrow biopsy. Eli was crazy grumpy when he woke up, which is common for most younger kids. He always picks something to obsess about when he wakes up and he just repeats himself over and over again. Yesterday, he kept saying, “Dad, you’re not wearing a gown, you are supposed to wear a gown so I don’t get germs!” What have we done to our son? He’s destined to grow up a grade “A” germophobe. Also on Thurs, we found out that Wed’s harvest was 2.3 million (yeah), so we had to do a harvest again (they wanted 7m and Fri/Mon we got a total of 1.4m). We also had to get an MIBG injection Thurs afternoon.
Today, we had the MIBG scan, which required another 7am appointment, but anesthesia was late because of a broken machine, so it was 10am before they got him in. That lasted 1.5 hrs and then we went through the wake up phase again (which went a bit smoother today). We then waited for a few hours to talk to Dr. K until I finally gave up and told the secretary to have him call me if he wanted to talk to me, but we were going back to the House. They called later and said that he would just talk to us Mon. when we come in for blood work. We went ahead and passed on the backpack, so we’re going all weekend with no appointments and no backpack of fluid! That means Eli will have to keep drinking and eating well, but he’s on Megace, so we think that shouldn’t be too big of a problem. We also found out today that his harvest yesterday yielded over 5 million stem cells, so with the 3.7 million we had from the first 3 times, we had more than enough! They were actually worried about getting enough since he had such high dose chemo the last two rounds. Now we wait for the MIBG and bone marrow results. Those are the most harrowing. Eli’s bone marrow has been very stubborn and his best chances lie with starting 3F8 completely clear of cancer. The MIBG should show us what bony spots are still around that will most likely need to be treated with targeted radiation.
We have met quite a few older boys lately that are here for their “every 6 month checkup” since they had 3F8 treatments years ago. It’s encouraging to meet these otherwise normal kids that are 3F8 success stories. A follow up on our buddy that relapsed in the brain is actually good news. They said the tumors were small enough they didn’t need to operate. Plus, they have an antibody called 8H9 that is specifically for the brain and has had fantastic success. On the other hand, we have been following a fantastic family from FL who 2 days ago lost their 9 year old daughter to Neuroblastoma. I had been following their story and e-mailing her mom for months and was so emotionally involved with their journey that when I was reading the follow-ups today in the MIBG waiting room on my cell phone, I couldn’t stop the tears from flowing. I’m sure I was quite the sight. Prayers for the Skees family and their friends would be appreciated.
Every night at the Ronald McD House has not only been a dinner, but a toy giveaway. Eli has probably seen about a dozen Santas in the past week or two. They really go all out for the kids and families stuck in treatment over Christmas. Now that Hanukah is over, Christmas celebrations have begun. I shouldn’t be too surprised, but the lack of Christ in Christmas is extremely and painfully apparent to us out here. Everything is Santa, Jingle Bells, and “Happy Holidays”. I have seen ONE nativity scene so far, and that was in an apartment complex. I swear I’m the only person in NY wishing people a Merry Christmas (sarcasm warning). I feel like we are a year or two away from official legislation to change the name of Christmas to “Winter Celebration” or something like that. Ok, I’m off my soap box (for now). Thanks for all of the prayers!