Sorry for the lapse in updates. I had to go back and see what I had mentioned last so I can bring everyone up to speed. Since I last updated, we took Eli off of hydration completely because his electrolytes had stabilized. They said that if we could keep him drinking 40 oz a day, he would stay hydrated enough. Since Eli is on Megace (the appetite stimulant), he does better with eating and drinking so we thought we could handle it. We deaccessed him ourselves on Wednesday night so he could take a shower. It’s hard to believe that in the 6 months that he has had a port, I’ve never taken out his needle before. We’ve just never had to since a nurse has always done it. It was easy, especially after watching it done so many times. We did have to get him reaccessed on Friday morning so they could see where his electrolytes were at after not being on any hydration for 2 days, but as soon as they drew the blood, they took the needle right back out. We got the call later Friday morning and the nurse practitioner said, “Whatever you are doing with Eli, keep doing it. His electrolytes look great, he’s not dehydrated, and everything is fine.” I also asked her about the VMA and HVA scores since we had him retested. Both were in the normal range! Whew, that was a huge relief as those markers are typically good indicators of whether the cancer is taking off again.
So … the plan (ha). We are going to try to get Eli’s teeth spacers installed on Thursday. I say “try” because they want to do it with just local novacaine shots and I’m not sure how well that will go over. It’s really the only way they could get it scheduled for this upcoming week, so we’ll see if it works. We had Eli’s tested for HAMA last Wednesday and we should know that result this coming Tuesday. If that is negative (prayers for that appreciated), we will start his GMCSF shot on Wednesday and do that every day for the next 10 days. His sixth round of 3F8 (second round on this 1 week protocol) will begin the following Monday (September 8th). We need to do scans after the second round of this protocol, but we will try to do them at the same time as the 3F8. For example, we’ll do bone marrows on Friday morning right before his 3F8 treatment. That way, we can hopefully head for home as soon as that week of 3F8 is over and have 3 weeks to enjoy being home. Then round 3 should be one week and not require any scans, so if we are really lucky, we can come for one quick week of treatment and head right back for home. Wouldn’t THAT be nice? Silly me, making plans again, we’ll just have to keep rolling with the punches. All I know is that we are MORE than ready to come home after spending our entire summer in NYC. Eli can’t wait to see his dog again and I can’t wait to see my motorcycle again. 🙂
Wednesday we went to the American Museum of Natural History with the Larsons and had a great time. Eli was so excited to show Coleman and Caden everything there was to see. It was fun to see him acting like the museum curator. We started to count up the number of times that we have been there and it’s nearing a dozen now, so he might as well be an honorary tour guide! Thursday was Lacey’s birthday (and the beginning of my 29 day rubitinfest where I am “a year younger” than she is). 🙂 We actually got to do something really fun on her birthday as it happened to be the night the House took families to Chelsea Pier to go bowling, one of our favorite House activities! As our friend Tanya was texting us the score by score of the ISU vs. SDSU game, we saw a car with an Iowa Hawkeye sticker and Iowa plates! Friday (after our bloodwork), the House loaded us up in a Greyhound bus and we took off for Bradley Beach in NJ. A family had a vacation house there and they threw us a BBQ lunch and a really great dinner, complete with an entertainer singing everything from Sinatra to the Monkees! It was a fun and full day. Eli of course spent the entire time looking at shells and jellyfish on the shore. One unfortunate thing about the trip is that we packed our binder full of all of Eli’s movies so we could watch something on the way there and on the way back on the bus. When we unloaded, we forgot the binder on the bus. We immediately called the bus company within 10 minutes of the driver leaving to let them know and they said they would look for it when the driver pulled in. Long story short, the binder mysteriously disappeared and we have been getting the run around for the last few days about what could have happened to it. It’s frustrating as we had at least 104 DVDs in there (those were the ones I could remember), basically Eli’s entire collection. We are still making daily calls to get the full story, but it is pretty disheartening to think that someone from the maintenance department or cleaning crew would have made off with a cancer kid’s DVD collection.
Well, that’s it for now from NYC. Thanks for sticking with us, we’ll check in again once we have something worth sharing!
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