I know everyone was probably expecting an update before now, but it has been hard to find the time this week. Plus, there really wasn’t much to say more than “chemo is going fine” from a treatment standpoint. We have gone in to Sloan at our convenience every day since Monday to get Eli’s Irinotecan. We were really expecting some horrible diarrhea since Eli already had chronic diarrhea since his surgery in 2007. However, with 2 diarrhea meds plus his normal once a day Acidophilus, Eli has remained very normal, which is great! His energy and appetite has been through the roof and he has been playing hard every day. Most of the time he plays with his buddy Ber van der Meer. Tuesday was no exception. After treatment, we met up with Ber and his family at the St. Patrick’s Day parade. It is the longest parade in NYC. It started at 11am, and when we were heading back to the Ronald at 5:30pm, it was still going on strong. There were no floats, it was mostly a high school band, then a bagpipe brigade, then another high school band, then more bagpipes. I have never heard so many bagpipes in all my life! I don’t understand how all of these high school bands got to come to play in NYC either. They were from all over the US and they weren’t exactly good (no offense to anyone from Tahoma High School in Wisconsin). Eli was a big hit with the onlookers with his green mohawk. He was photographed by total strangers several times. The boys enjoyed exploring the park and doing some rock climbing. I got some pretty good pictures of the boys (and Lizzie, Ber’s incredibly adorable little sister). Check them out by clicking the thumbnail below:
http://www.caringbridge.org/visit/ber
Today we went into the clinic at 10am to get started on the chemo so it could be done in time for our 1:30pm radiation appointment. Eli had to be NPO (nothing per oral) all morning, but he was so distracted with playing in the playroom that he didn’t really notice. The chemo was done by noon, so we waited around until 1:30pm for radiation. It took a little longer today than normal because it was his first one, so they had to do some setup. Normally this will be about 45 minutes. Also, it will normally be done first thing in the morning so he doesn’t have to be NPO all day. So tomorrow we will go in at 7am for a 7:30am radiation and then Eli will get his last dose of Irinotecan after that. After tomorrow, we’ll have 2 days of radiation down and 15 to go! We are praying that Eli has very little discomfort with this radiation and chemo.
Monday was a fun day as well. You’ll remember that we went to a St. Baldrick’s Event last week at FAO Schwarz. That was a lot of fun, but there was another huge event at The Boathouse in Central Park. We were late getting there because it took such a long time for the chemo to arrive, but once we got there, it was a real blast. Again, for those that aren’t aware, Barbara from Candlelighters, NYC throws these St. Baldrick’s Events every year to help raise money for pediatric cancer research. This year, her two events have raised $135,094 so far! Once again, the Central Park Precinct NYPD shaved their heads in honor of Eli and raised nearly $1,600. There were also a few individuals from CO, IL, and NM that shaved in honor of Eli. We got to hang out with the police again this year during a roll call and Eli loves to tell people that he saw three “bad guys” getting booked at the station. 🙂 There were three other shavees of note this year as well. Barbara’s husband Stewart and son James both shaved their heads and Eli was able to help shave them.
The third shavee of note? You likely guessed it…. me! Eli asked me if he could shave my head, what was I going to say, no? Plus, thanks to chemo and radiation, Eli will soon be parted with his beloved mohawk and he will also be bald once again. I thought it would be great if I was bald already and then Eli would simply be “like Daddy” instead of “losing his hair”. Eli had a blast shaving my head and was laughing and giggling the entire time. He loves to feel it while we’re playing Nintendo DS together. At first, Mary (Eli’s personal hair stylist and the best mohawk designer in the entire world) left me with a mohawk and spiked it (I have one picture of this). 5 minutes later, Eli asked to shave the rest of it because he didn’t like it. I think he likes being unique with his mohawk. It certainly gets a lot of attention, especially when we spike it up and paint it green! So I am trying to get used to the new look and I think some people that don’t know us assume I am the patient at Sloan when I’m with Eli. 🙂 Click below for some pictures from the Boathouse St. Baldrick’s Event (I might get more posted later as I get them from Anthony Causi):
Eli had fun making his NCAA Men’s Basketball Tournament picks today. I pulled up www.64-mascots.com to figure out what the mascots were for all 64 teams and he made his picks based on which mascots he liked the best. Unfortunately he picked UNI (Iowa Panthers) to go all the way to the end before losing the last game to Villanova. Well, he could still have the ultimate winner picked I guess! 🙂 I am 10 for 12 so far, but I doubt I end so well. Here are the rest of Eli’s picks (click to enlarge):
As always, thank you so much for all of your prayers. I think that 3 more weeks of radiation is going to be rough on our little guy, plus his counts will be dropping and he will once again likely be neutropenic (no immunity and at high risk for infections). We really appreciate your prayers now as always. I will try to post more next week!
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