Well, I really haven’t had all that much to say about radiation, but I wanted to at least let people know that it is going well. Each morning, we show up for radiation at 7:30am. Around 7:45am, they come back and get us, put Eli asleep, and about 45 minutes later, they bring him back to me groggy and full of complaints and arguments. I have found that the best approach is to get him back to the Ronald as fast as possible and put him in bed and ignore the complaints until he drifts back off to sleep. Around 11:30am, he usually wakes back up in a great mood. It’s usually golden from there! We did have issues on Monday and Tuesday with Eli feeling like he was going to throw up around noon. He didn’t actually throw up, and as soon as I gave him a Zofran, he was immediately fine and eating/running around. Yesterday I gave him a Zofran after radiation at 9am and he never did feel sick, so I think a preemptive strike against nausea is the way to go. Today I didn’t give him the zofran at all because we were so busy that I forgot and he never needed it. Eli’s counts were good on Monday and we will check them again on Friday. We expect them to go down next week as the chemo/radiation combo is usually a count killer. If his counts get super low, he’ll once again be Neutropenic (for those that haven’t been with us that long, Neutropenic is when you have very little white blood cells to fight off infections, so even a simple cold could be very dangerous). Once he is Neutropenic, we bust out the masks and limit the contact with others, so obviously it’s great if Eli can keep his counts high.
Every day I have been trying to talk to him about possibly trying the radiation without anesthesia. It usually gets shot down very quickly, but I made some progress yesterday when I actually got him to try laying down on the pad with his face in the mask to see what it felt like. It lasted about 3 seconds and he popped up and said, “Yep, that hurts, I’m not doing it without sleepy medicine.” 🙂 I thought it was a good step forward and I’ll keep trying my luck with the idea. He might even be able to be bribed, we’ll see. 🙂 It would really help if he didn’t have to have anesthesia for several reasons, but the biggest one is because I could then take him to the 9th floor after his appointment so he could do some schoolwork with the teacher at Sloan. Right now, that’s just not possible because he is always impossible to talk to after anesthesia for a few hours. By the time he wakes up, the morning is over. Like I said, it’s a work in progress. This morning posed a setback in my plan of doing it without radiation. Usually the process takes 45 minutes. This morning it took an hour and 45 minutes! By the time I was about ready to go back looking for him, the nurse brought him out. She said they had a lot of trouble with the getting the machine aligned today. I can only imagine that happening the day he decides to try it without anesthesia!
I’m very excited to tell you about yet ANOTHER St. Baldrick’s Event where Eli is going to be honored. This one is really near and dear to our hearts because one of our great friends from our church (Cornerstone), Kris Scheppler, has decided to throw a St. Baldrick’s Event in our hometown (Ames, IA) and not only that, she is going to shave her head in honor of Eli! A woman shaving her head is always a very big deal (obviously) and I hope she is able to raise a lot of money for St. Baldrick’s. Remember, St. Baldrick’s gives its money exclusively to pediatric cancer research. It is going to be held at Dublin Bay in Ames on May 16th at 2pm. I don’t know if we’ll be in Iowa that weekend or not, but of course if we are, we’ll be there! The Event will be honoring some local kids like Eli, Coleman Larson (cp: ColemanScott), and Nic Roney to name a few. Here is the website where you can find out more information.
http://www.stbaldricks.org/events/event_info.php?EventKey=2009-2248
You can also go there to volunteer to help at the event, volunteer to have your head shaved (and raise some money) or just donate online to the brave souls that have decided to shave (so far it’s just Kris, but of course this is really the first announcement of the event besides a mention on Facebook, so if you want to shave your head, get signed up)! If you are a local business and would like to donate gift certificates to be included in a raffle, please contact Kris and let her know (her contact information is on the main Event page). A big thank you to Kris, throwing a St. Baldrick’s Event is a LOT of work (not to mention how big of a deal it is for her to be shaving her head) and I hope it is a big success. I will mention it again as time gets closer, I just wanted to let everyone know that the event is scheduled and really happening!
We will be doing this routine of morning radiation until April 10th. After that, we’ll see if counts can recover a bit, and then give him a blast of high dose irinotecan with high dose temodar. It is a one week treatment (5 days) that will once again nail his blood counts. This is one of those times where if he gets a fever while he’s neutropenic, he goes inpatient until his counts come back up. Well, I’m getting ahead of myself, we’ll deal with that when it comes. For now, we have 6 days out of 17 done for radiation and so far he is holding up really well. Thank you for the prayers and for the notes of encouragement and support. We love to hear the stories of how you came across Eli’s CarePage and we certainly appreciate it when people are moved to do something great for childhood cancer awareness because of meeting or hearing about our Eli!
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