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Back and forth, back and forth. The decision on what to do next is being bounced around like a ping pong ball between Niwa and Hung at the Olympics. Eli is under the care of both the Leukemia team and the Transplant team here at Sloan. On Monday, Eli had bone marrows (yes, another bone marrow biopsy only one week after having one in Iowa). They wanted to see for themselves what we were dealing with. As expected, the blasts were there and around 15% on the ‘smear test’. The thought was that the FISH would show an even higher count, so we were going to be doing another round of chemo to lower these blasts before heading into transplant. The leukemia doctor yesterday said, “We definitely want to give him another round of chemo before transplant, we just need to decide what to give him.”

Eli’s echo cardiogram of his heart (that we repeated yesterday) showed that his heart function was good, but not perfect. Therefore, they didn’t want to give him too much Doxorubicin if he had already had some in Iowa City (as he did have some years ago at MSKCC). They requested the amounts and types of chemo that Eli had in Iowa City, so I requested those (and received it from the great Nurse Practitioner Mary in Iowa City within an hour). As it turned out, Eli did have Doxorubicin in Iowa City as well, so they weren’t comfortable giving him more of that.

Today, the very same doctor that said Eli was definitely getting another round of chemo said, “Well, it turns out that the FISH doesn’t show any leukemia marked cells. 98% are abnormal, but that might just be the chromosomal translocation and doesn’t indicate any strong leukemia presence beyond what was seen in the smear test. I don’t necessarily think he needs more chemo as it might not do that much.” So that basically means that his blasts might not be much higher than 15% and Dr. Prockop had said that they could still do a transplant if the blasts were under 18%. The combination of the chemo during transplant as well as the T cells from the donor can help fight those AML blasts. So now the decision is back in Dr. Prockop’s court (the Transplant team) to say whether she wants to do another round of chemo to lower that 15% number or if it’s better for Eli to go into the transplant stronger. Last week she told me she’d rather he go in stronger with some leukemia still showing, but we’ll see what she says this week. She’s off today and tomorrow, so we won’t find out until Friday what the decision is. We, of course, are perfectly fine with waiting if that means we’ll make the best and most informed decision for Eli. On Tuesday, Eli will have his most dreaded scan, the MIBG scan, just to make sure the Neuroblastoma is still out of the picture (we wouldn’t want to have to involve yet a third team, although Dr. Kushner did seek Eli out between procedures so he could say hi). That is the test that Eli has to lie perfectly still for without sedation for about an hour. It also happens to be the best scan for catching Neuroblastoma activity, so we’ll do that next week and pray for negative results.

This Monday, they started Eli on nightly GCSF shots in the leg to try to stimulate white blood cells to get him out of being neutropenic. Of course my first question was whether that would stimulate the leukemia as well, but they said there is no strong evidence that it does and people usually fall in one of two camps “It doesn’t” and “It might”. Since Eli’s counts have been so low for so long, putting him at many risks of infection, they decided it was worth doing the GCSF to try to get his counts up. After two shots it hasn’t done anything so far, but hopefully we’ll start to see a rise soon.

Meanwhile, we are making the most of our situation and trying to stay entertained in the hospital. Bingo has been a popular event (everyone wins a prize) as well as an online gamed called Lego Universe, which we sadly discovered is being discontinued at the end of this year as they didn’t have enough demand for the $10/month subscription price! Eli has been enjoying visits from friends, visits from the school teacher Anne Marie (who has been thoroughly impressed with Eli’s evaluation work thus far), and even a visit this afternoon from a music therapist who just so happened to be from Ankeny, Iowa originally. 🙂 Tomorrow is Thanksgiving, obviously, and the hospital is having a big Thanksgiving feast in the big playroom on the 9th floor of the hospital from 12-2pm. They are allowing us to invite guests, so we were thrilled when NY Grandma Barbara and Stewart said they’d join us for lunch! Barbara has, to no one’s surprise, been a life saver for Eli as she has made him Shells n Cheese (that he loves) and spaghetti for when nothing on the hospital menu sounds good. Barbara takes extra precautions to make it very special for Eli since he is neutropenic, which means she only uses freshly opened ingredients, uses filtered water, and wears gloves while preparing the food. She really does go above and beyond. We’ve also enjoyed the company of Stewart and their son James while we’ve been here. We’ve also seen Shirley, Chloe, Steve and tomorrow we get to see Rich after a very long time of not seeing him! In addition, we’ve been able to catch up with some of our favorite nurses from MSKCC (although if you are one of those nurses reading this and haven’t stopped over yet, you’d better come say hi!) Eli is always excited about having visitors.

I have continued to post pictures here: http://www.elisarmy.com Thanks to everyone who has been leaving notes of encouragement. We read them all!

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3 Responses to Undecided

  1. SilviaVanni says:

    Thinking of you guys tonight. Much love to you,
    Silvia / Sal’s mommy forever

  2. Dakota2526 says:

    Thinking of you guys. Absolutely can’t wait to see you in a few weeks. Praying hard for guidance for your wonderful doctors and strength for two of the best parents I know.

    Stephanie, Dakota, and Brylee

  3. ken says:

    Hey Eli! I have been praying for you. I am a native of NYC but have lived in KS since 1964, the year of the World’s Fair. The Unisphere may be the only remnant, I don’t know. I know dad and you follow the Cyclones and they have won some games that they weren’t supposed to. Glad today wasn’t one of them. Sorry to mention it, but I’m not repentant. Please smile. The really important thing is God loves you through all your trials and is there to call on. Just ask your great grandpa Ross. He’s the one who first asked me to pray for you, way back in the summer of 2007. I know it’s tough going sometimes, but God is an ever present help in times of trouble.
    Continuing in prayer, ken in KS

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