Ok, I’m bad. Seriously, not updating the entire week of 3F8 in NYC is pretty inexcusable. However, as my friend Tanya said tonight, “We’ve gotten used to no news being good news, so I assumed everything was going well in NYC.” It’s been a roller coaster week, that’s for sure. Those of you that are on Facebook might have gathered that from my various “status messages” this week…
An “up” moment was that Eli and I got to witness our first Marathon. That was quite the experience. It was a LOT of fun, although we did get stuck on the West side of 1st Ave as tens of thousands of runners came by. By the time we made it down to E 58th street (which was the only place we could cross the street) and back around to the hospital and Ronald with Barbara from Candlelighters, NYC, we had missed all of our friends that we knew were running. Oh well, it was still a great time and we loved the experience of seeing so many people and hearing a different street band on every corner. Here are some pictures from the Marathon (click the thumbnail below), although ironically I didn’t get many pictures of the actual runners. 🙂
A “down” moment was hearing on that same day that one of our little friends left her family on earth to be with her Father in Heaven. Faith Griffin (http://www.caringbridge.org/visit/faithgriffin) was an amazing little girl and was absolutely in love with Isaiah. Even after they went home to Florida because NYC had nothing left to offer them, I would send her pictures of Isaiah to look at. She has a little brother Elijah (great name, huh?) and we had grown very close to her mom and dad and grandma.
Monday wasn’t any better as we learned that another family lost their little boy to Neuroblastoma (http://www.caringbridge.org/visit/brody.a.hurt). I have mentioned Brody Hurt on this CarePage before. They are from Kansas and another family we had fallen in love with. Their daughter, Kylie, was amazing with Eli and he loves her a lot. Brody was diagnosed shortly after Eli and we met them at a Halloween party at Barbara’s house in NYC last year. We spent a LOT of time together over the past year and Shawn and Carey are great friends. It really hit Lacey and I hard. It felt like we had lost a nephew. We have gotten close to kids that have passed away before, but Brody hit really close to home for us.
Monday continued to be hard as Eli had 3F8 treatment and it was pretty brutal. There was a lot of pain and the reality of how terrible this treatment is came screaming back to me (literally). Tuesday was more of the same, but we had to cut Eli’s recovery time short to get to an MIBG injection and a fitting for his teeth spacers. His spacers are metal devices that are cemented to his back teeth so that when his 7 year molars come in, they won’t come in where his back teeth were pulled. It’s kind of hard to explain, but it was necessary and he did fantastic because they let him sit on my lap while they put them in. It turns out he likes them because it feels like he has teeth in the back again and his food chewing is easier. An “up” moment on Tuesday was that the Larsons arrived in NYC, so we got to see Scott, Peggy, Caden and the amazing Coleman at the Ronald McDonald House! An Iowan reunion! 🙂
Wednesday was another emotionally trying day because yet another one of our “adopted nephews”, Kody Edwards (http://www.caringbridge.org/visit/kodyedwards) from Mississippi earned his “angel wings”. Justin and Wendy are amazing parents and once again, we spent the good part of the last year getting close to their family, so losing Kody was hard. By the end of Wednesday, I was ready to write that day off completely. Between election result discussions, a morning MIBG (where I thought I saw something new when the scans came up), an afternoon 3F8, an evening MRI (that we missed a Ronald trip to the circus for), and hearing about Kody, I was spent. To make matters worse, none of the doctors would look at Eli’s MIBG for me that day, so I had to wait until yesterday morning to see if my suspicions were correct or not about there being some new spot on his MIBG.
As it turns out, I was wrong about the MIBG (praise God). I had a nurse practitioner look up the MIBG report for me yesterday morning first thing and it said that there was nothing new, and that it still showed no evidence of disease. HUGE relief. On top of that, Eli’s pain was pretty minimal yesterday. He slept all the way through it and only woke up with pain towards the end when it was flushing. Maybe 15 minutes of intense pain. I think God knew I needed a break. We did a CT scan yesterday morning before treatment, but I haven’t heard about that or about the MRI yet. We had bone marrows this morning, which are always a bummer because they are painful and leave big holes in the kids’ backs and hips. That is the only test that Eli is put under for and we probably won’t know those results for a week or two. If all of the rest of Eli’s scans are clean, we won’t need to come back to NY until the first week in January. That’s right, January 2009. That would put us home for Thanksgiving, Christmas, and New Years! All three of which we spent in NYC last year!
Last night we had two fun events. First, we VERY briefly got to meet a really great guy that came to visit our buddy Griffin and his family (http://www.caringbridge.org/visit/griffinschager). Griffin’s dad, Lou, is in the US Navy and a four star Admiral by the name of Admiral Timothy J. Keating (http://en.wikipedia.org/wiki/Timothy_J._Keating) came by the House to visit. We walked into the Ronald as they were there and even though Eli was just getting back from treatment, he perked up slightly when he saw that a man in a really fancy uniform was chasing him down because he wanted to give him something. It was a very cool medallion that says “Commander United States Pacific Command” on one side and “Presented By Admiral Timothy J. Keating” on the other. He told Eli that the medallion meant that they were friends. Our meeting was brief, but he was a very sincere guy who didn’t want any fanfare, he just wanted to express his support for our families. Speaking of Griffin, this is a big month for him as he has a lot of chemo in November, so joining Team G-Force in sending up lots of prayers would be appreciated.
The other fun event was that we got to go to an IMAX theater and see a private screening of the new Madagascar 2 movie that didn’t come out in theaters until today. The Ronald had 25 seats available to them, but I’m not sure how many families actually went since transportation was up to us and there were a LOT of people there. We got to go with our little buddy Justin and we all had a blast. The screen was absolutely huge and both boys let out a “Whoa” when the movie started and they saw how big the screen really was. It was a really funny movie and we all enjoyed it a lot. As a bonus, we all got free popcorn and Coke! 🙂
Tonight we will be busy going to a “Gazillion Bubbles” show (whatever that is) and packing up to head home very early on Saturday morning. Hopefully weather won’t be an issue. Thank you all for keeping us and the other families in your prayers. We all appreciate it very much and thank you for the important role you play in our journeys.
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