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Long time readers know that I typically start these updates out with an apology for taking so long to update. Honestly, every day I hope that we’ll learn something new to share with you guys, but this week was full of nothingness. We did some scans (some of them for pre-transplant baselines and some to just get our Neuroblastoma workup done). One good piece of news is that Eli’s MIBG scan was clear (the best indicative scan for Neuroblastoma).
The deciding factor was supposed to be the bone marrow results from Friday. Unfortunately, those final results won’t be in until Monday, so we won’t have a direction until then. Dr. Prockop had an early look at them and said that she feels that the blasts count has at worst stayed the same and has possibly gotten a little better. I think the leaning is towards going straight to transplant, but the transplant team and the leukemia team will have to agree on that before the decision is final.
One drawback is that Eli has developed two sores. One on his side and one on his leg. They aren’t bed sores, they are deep sores that might be caused by his ANC rising (his ANC is up to .4 now, by the way, which is close to not being considered neutropenic anymore). These sores make it pretty painful for him to walk, which is something we need him to be doing more of, not less of. It is also something Infectious Diseases and the Transplant team really want taken care of before we do a transplant, so it might slow some things down. There has been much back and forth over doing a biopsy of the sore on Eli’s side as it is swollen, but so far they haven’t decided to do that.
The transplant team put Eli on a new antifungal (his chest CT showed a small infection in his right lung that they don’t know what it is, but want it cleared up ASAP). It caused severe pain, high blood pressure, clamminess and was all around pretty scary. So they are now giving it to him with a premed of Benadryl and giving it to him very slowly (over 3 hours instead of 1). That seems to have helped, but that first day brought back memories of doing 3F8 on the other side of the floor!
There was an adventure yesterday in regards to doing a pulmonary function test. The machine they have here wasn’t geared enough towards kids, so Eli had to go across the street to another hospital to have that test done. I warned them in advance that we wouldn’t be taking an ambulance and that we would walk. The ambulance company is out of network and charges people $1500 EACH WAY for a ride across the street. Ask any MSKCC family that has had to do it, it’s insane. So anyway, they walk Lacey and Eli down to the street and there was an ambulance. It was too late for her to back out, so they rode it across the street where they told them they went to the wrong place. So they went to a new place where they told them that the first place was right. So they went back to the first place where they said it wasn’t where they needed to be. So they came back to Sloan, didn’t do the test, and Lacey informed them in no uncertain terms that neither we nor any insurance would be paying for that debacle. They rescheduled for Monday and you can be sure I will not be setting foot in an ambulance even if they send one. We will be walking. 🙂 The good news is that Eli was on dilaudid for the pain in his side and was in a fantastic mood and enjoyed the rides up and down the block. 🙂
Isaiah and I had a ‘first’ the other day. Sai loves to get a donut at the food carts on York Ave. So we stopped at one and there was a sign on the window that said, “Sorry, closed for 10 minutes for prayers” and the guy inside was standing up and kneeling down repeatedly (facing North towards Mecca I’m guessing). We waited about 5 minutes and then he opened the window. I told him Isaiah wanted a donut, but that we were waiting for him to finish. He said, “I stop for child only.” 🙂 He only charged me $1 for two donuts as the second one was “on the house” and he refused my second dollar. After we walked away, he slid the window shut and resumed his prayers. I love the things you see in NYC sometimes. 🙂
Thanks to everyone who has been sending Eli notes and even packages. If you want to mail something to Eli, you can use this address:
Memorial Sloan Kettering Cancer Center
Attn: Elijah Horn – 9th floor pediatrics
1275 York Ave
New York, NY 10065
Eli has continued to have local NY friends visiting, which has been great for morale. Grandpa and Grandma arrive tomorrow, which will also be great for morale. One of Eli’s visitors last week was Katie Linendoll. She is on CNN as a tech advisor and has a tech blog called www.talknerdytome.net. Yes, right up my alley and I enjoyed talking about gadgets with someone else who has the same level of appreciation of them as I do. 🙂 She is also a volunteer for Candlelighters NYC with Barbara. Anyway, she brought Eli a new iPod Touch (with the cameras) and he IMMEDIATELY started texting and using a walkie talkie app (TalkBox) with people (especially my brother in MO and sister in IA). He was even texting me when I was in the kitchen or bathroom! 🙂 It’s so great for his reading and writing practice. It’s also nice that he can FaceTime with other iPhone/iPod/iPad users. If you want to iMessage with Eli (meaning you have an iOS device), you can send him an iMessage at: firstname.lastname@example.org. Don’t forget to tell him who you are. It might take him a while to reply as sometimes he misses the notifications, but hopefully he will. He daily runs the battery down to nothing on that thing. It’s been a ton of fun and very heavily used. Thanks again, Katie! 🙂
Ok, that should catch everyone up for now. Hopefully we’ll have a plan of action on Monday that is more defined and I’ll be able to let you know whether we are doing more chemo before the transplant, or just going straight to transplant. Thanks again for all of the prayers, we absolutely appreciate them all!
Oh, also a huge thanks to Eli’s school (Ankeny Christian Academy) and the amazing support we have from the faculty, students, and parents there. One of the teachers has even arranged a benefit at Bandana’s BBQ in Ankeny to help pay for our Ronald McDonald House expenses in NYC. You can get more details here: http://www.facebook.com/events/318376461508623/