Well, as you would expect, we had some fun this weekend. Most importantly though, we had an appointment with Dr. Wolden in Radiology today. It didn’t go quite as expected, but regardless, I felt much better after leaving her office. I had a lot of concerns about the effects of radiation and she gave me some peace about them. You may recall from the last time we had radiation that we really liked Dr. Wolden (just like everyone else we know that has dealt with her). She is fantastic with the kids (as you’d expect/hope) and she is really good at explaining things.
Dr. Wolden was really happy with how small the tumor was and with how early we caught it. In fact, she said that Eli is the first case where a routine MRI scan actually caught the Neuroblastoma. It was very recently that they started doing the MRI with each workup to check for relapse. Before, they were using CT, but wanted to cut back on the amount of radiation the kids get. Sure enough, the routine MRI ended up catching something very early on for Eli. She said most of the time kids come with very large or multiple tumors. For the last 5-6 years, they have been giving kids a radiation of 21 grade to the entire head/spine and a boost of 30 grade to the specific spot the tumor was found. It has had a great success rate and it leads her to believe that we could get away with even less radiation, perhaps even 18 grade. This is all pretty new and experimental, but I assured her that we were big fans of trying less radiation if she wants Eli to be one of the first. She has done 18 grade on a 1 year old before, but never an older kid. She thinks Eli might be a good candidate because he had so little disease, but needs to run it by the Neuroblastoma team first. Even if we have to do 21 grade, it is a low does of radiation. Here are the potential side effects:
A negative impact on the pituitary gland could result in growth issues, but nothing that can’t be helped with growth hormones later if needed. This will be the second time his lower spine has received radiation, this will probably mean his growth will be stunted by 1-2″. Since Lacey and I are 5′ 8″ and 5′ 11″, respectively, she isn’t concerned that Eli will miss an inch or two when he gets older. There is a very, very small chance that he could end up getting a secondary tumor later on in life (like 20-30 years down the road), but many times this is benign or very treatable, so it’s not a huge concern. Hearing damage can sometimes be an issue, but again, with the low dosage, she doesn’t expect this to be a problem. Eli already has loss in the very upper register, so it seems that at worst he might need amplification later on if he struggles in school. My other major concern was with brain development. Dr. Wolden said that she expects these problems to be very minimal (if anything) since the dosage is low and since Eli is already 5 years old (if he was a few years younger, this would be a bigger concern). She said that obviously radiating the brain isn’t good for it, but she doesn’t expect at all that Eli will have major learning disabilities later on. I asked her if this would increase Eli’s chance of getting leukemia and she assured me that it wouldn’t, in fact that is one of her major studies that she participates in that has been going on since the late 60’s.
The bad part was that we didn’t get to do the radiation SIM today because anesthesia had 3 emergencies come up and weren’t available until Wednesday. She asked Eli if he wanted to try it without, but he flat out refused, and she said he was the boss, so that was that. 🙂 She said that he’ll have to lay on his stomach, and most kids under 8 can’t lay still in that position for 30-45 minutes very well. Plus, Eli still has a tender scar on his head that the mask will likely touch, so she thinks that it might be best to plan on anesthesia every day, which I am ok with. She said she’ll give him the opportunity to try it on his own later if he wants, but it’s a 30-60 minute session, which is hard to lay still for when you are on your stomach and wearing a mask. I was ok with this, especially since it’s only once a day instead of twice a day like he had before when we did the abdomen and leg. Since the guy told me this morning we’d be doing the SIM with anesthesia today, I kept Eli NPO (nothing per oral) all day for nothing. 🙁 The second we left Dr. Wolden’s office, we ran to Baskin Robbins to take care of our hunger issues (Eli also kept me NPO so it was fair, which I couldn’t argue against). 🙂
So, Wednesday we will do the SIM with anesthesia and then get started on the real radiation by Monday or Tuesday (Friday if they are able to get the radiation blocks cut for Eli quickly). He will have 10 days of radiation to the entire head and spine and 7 days of 30 grade boosted radiation to the specific spot. Dr. Kramer told us that they had found another very tiny spot that they weren’t sure about in the back of Eli’s brain on his MRI before surgery that could be something or could be nothing and that Dr. Souweidane could have never gotten to it or found it for a biopsy. Dr. Wolden wants to do another MRI to specifically look there to see if it looks like it really could be something, because if it is, we’ll want to boost that spot as well. So maybe we’ll get an MRI done this week, which is pretty straightforward and doesn’t need anesthesia. I thought Eli would freak out when he heard that he had to have a mask, but a few nights ago his buddy Sam was nice enough to show him HIS mask and Eli even put it on his face for fun. Sam also told him that he’d get to decorate and color it, so Eli is actually excited about that. THANKS, SAM!
Ok, that’s about it for the medical stuff. Eli is on NO medication right now except an over the counter Acidophilus to help with diarrhea (which seems to be working actually)! As usual, the hardest part is keeping Eli slowed down a bit so he doesn’t ram his head into something and rip open those stitches! It is great seeing him run around and play hard. Last night, his buddy Ber showed up for another round of two week 3F8 and ended up just a few doors down from us, which was very exciting!
Saturday we enjoyed a trip to Lincoln Center on the West side of Central Park with our good Missouri friends, the Atkins, to enjoy an hour of “Hot Jazz for young people” where they played jazz and taught the kids words like “tempo, riff, crescendo, etc.” Eli didn’t want to go, but I drug him there and he had a blast. I was in heaven since Jazz was something I loved to play in high school (Tenor, Alto, and Soprano sax) and they had 3 sax players that were really great. The trombone player was also phenomenal, but I think Eli took a liking to the drums. Hmmmm, I’ll have to work on promoting the sax a little more I think. 🙂 When we got back, they had a screening of “Hotel for Dogs” in the playroom for the kids while the adults had sushi upstairs. Yum!
On Sunday, we had breakfast at the House and then went on an adventure to find a birthday party in the Bronx! Charlie, Michael, and Kyle are 3 Dominican boys that we fell in love with here at the Ronald McDonald House in NYC. Charlie and Michael both had sickle cell disease and their brother Kyle ended up being a perfect match donor for them both. Charlie and Michael both had successful transplants and have officially moved out of the House to an apartment in NYC on the other side of Central Park (and we miss them a lot)! Kyle just turned 8 and was having his birthday party at a McDonald’s on West 170th Street. I figured out that a bus went from 72nd and Madison Avenue up to the McDonald’s we were going to, so we left around noon and showed up right at 1pm. I quickly realized that we had gone from being members of the demographic majority to the minority in that 45 minute bus ride. If it wouldn’t have been for Dylan Hartung from Australia (another Neuroblastoma warrior at the Ronald McDonald House) showing up with his dad and brother, Eli and I would have been the only Caucasians in the entire McDonald’s. 🙂 It really started to show when the dancing started. I think this is where Eli’s true colors showed, so to speak. It’s hard to compete with a bunch of Dominican and Bronx kids, but I don’t think any of the kids noticed because they were all just having a blast.
On the way back, we decided to follow the Hartung’s back to the Ronald since they took a combination of the bus and subway. We rode the A train to 86th street, then the crosstown bus to 2nd Ave. We were waiting for the bus on 2nd Ave when we saw a very cool stretch Lincoln Navigator drive by. He waved at the kids and then Dylan jokingly threw his hands up in the air and said, “What? You aren’t gonna stop? We need a ride!” The brake lights popped on and the limo started backing up! The driver got out and said, “Where are you heading?” Tim told him we were going to 73rd Street and he said, “I’m just killing time waiting for a client and I saw this kid [Dylan] and couldn’t resist. Jump in, I’ll take you to 73rd Street!” You should have seen the looks on the kids faces when he opened the door to the limo. Ok, you should have seen MY face when he opened the door. The music was blaring, the entire floor was lit up with lights, the ceiling was sparkling, and there were enough leather seats for at least 20 people!” The ride (although short at only 13 blocks) was awesome and the guy didn’t want to take any tips when we hopped out. We made sure he took it by wrapping it up in Dylan’s business card and an Eli bracelet. He really made it a great end to a great day and gave us a fun story to tell.
Check out my NYC album and you’ll see pictures from Kyle’s birthday party:
So that is the update for today. I will be sure to update after Wednesday’s appointment with radiation. Thanks for all of the encouragement, support, and especially prayers!
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