Well, the rest of scan / 3F8 week is over & I’m happy to be writing this update from our kitchen at “home, home” in Iowa! I didn’t have much time to update from NY because we were rushing to get out of there Friday night. We had packed & thrown away “accumulation” a few hours each night starting on Monday. Friday, we decided we should go ahead & get some night time hours under our belts while the boys slept & so we packed & cleaned up the room from 1:30pm until we walked out the door of the Ronald at 8pm. I ended up shipping 6 boxes home full of toys & clothes & we should see those sometime during the upcoming week. We drove until 1:30am on Saturday morning, putting us somewhere in the middle of Pennsylvania. Then we took off again at 8am on Saturday morning & pulled into our driveway around 10:30pm. The boys were great the entire drive, we were very thankful for that. Eli had bone marrows done on Friday, so he was a little sore sitting in his car seat, but he only complained once the entire trip. Saturday was full of questions from the backseat such as, “How many more states do we have to go through? Are we close? How many more hours? How many hours is 10 hours? Is it going to be dark out when we get home? When is it going to be dark out?” I’m guessing he watched 5 hours of Scooby Doo on the way home, for some reason he didn’t care to change the DVD. Eli was so incredibly excited when we got home & he kept saying, “We’re home, this is the real home, home!” I posted a picture in the photo gallery that I took with my phone of Eli in the backyard hugging corn, something he hasn’t seen for a very long time. 🙂
We did get some results before we left. Dr. Modak walked in & told our roommates (our amazing friends, the Orlandos, from New Orleans), “Your MIBG scan was clear.” Lots of smiles & sighs of relief. Then Modak sees that we are in the same room & says, “Your MIBG scan was clear as well.” Then he paused & said, “Wait, let me make sure I’m looking at the right one.” I thought Tony’s dad, Eric, was going to pass out. A few tense seconds later he said, “Yep, his was clear too.” Even bigger sighs of relief. 🙂 I wasn’t too worked up about it because Dr. Kushner had mentioned to me in the hallway the day of his MIBG scan that he had looked at it & unofficially it looked good. We also heard that Eli’s CT scan & MRI were clear & we already knew that his urine levels were normal. So that leaves bone marrow results, which will take at least 1 week if not more. I can’t overstate how thankful we are for each time a scan comes back clean. Nothing makes us pediatric oncology parents sweat more than scan week. Sometimes it is hard to thank God when you get bad news, but it is oh so easy to thank Him when He answers prayers in the way you so desperately wanted Him to. 🙂
We asked them to do 4 biopsies (2 in front in addition to the 2 in the back) instead of just 2 & they agreed. We’ve never had four biopsies done that were all clear. The clean bone marrows we have received in the past was from only doing 2 biopsies. You may recall I asked Kushner to do 4 last time & he forgot. This time I made sure Modak did all 4. I asked him how many times a parent asked for 4 sites instead of 2. He told me it was a first. 🙂 They typically make the kids really sore, which is why they do 2 most of the time, but Modak must have done a great job because Eli hasn’t been complaining about them.
The MRI was an interesting experience. They ask you a million questions about what kinds of metal you could possibly have on or in your persons & even the parent has to strip down & wear a gown to go in with the patient. I was reading through the checklist & it asked if you had any metal sutures or clips in your body. I remembered 6 years ago when I had my hernia surgery that the doctor told me he put in “mesh” to keep things in place & he compared it to chicken wire. I had no clue if that meant it was made of metal or if it was a type of plastic. I expressed my concern to the receptionist who muttered something to the effect of “it’ll be fine” as they whisked us back to the exam room. I walked past about 1,437 signs that warned of the magnitude of the magnetic field & that cell phones & credit cards would be wiped if they were brought in. These warning signs did not bring any sense of relief to the unknown material makeup of the mesh holding my intestines in place. As Eli was sucked into the MRI tunnel & the technicians ran out of the room, I had images of the MRI winding up & wire mesh ripping out of my loins at 100 mph towards the machine. Of course, nothing of the sort happened & Eli & I both fell asleep during the test despite the deafening clacking, beeping, & banging sounds coming from the machine. We have come a long way in medical technology, but for some reason they can’t devise a way to keep an MRI machine from sounding like your head is directly under a jackhammer. Like I said, Eli & I were both so exhausted it really didn’t matter how loud it was. Eli, of course, was very brave (once we convinced him that the head holder wasn’t a mask & wasn’t going to touch his face) & showed the MRI technician that a 4 year old CAN hold still for 45 minutes without anesthesia. I don’t know if I’d be able to do it. I’m not terribly claustrophobic, but the combination of being in such a small space & the knowledge that I couldn’t scratch my nose even if it did itch, would probably drive me crazy. As I said, the results showed no neuroblastoma, a real answer to prayer.
We start the Accutane tomorrow, so hopefully Eli won’t be on the deep end of the negative side effects pool. We’ll be home for 3 weeks, then we’ll head to NY for one week of 3F8s (no scans) & then right back home for 3 more weeks. By far, the longest stretch of time we’ve been home since all of this started in June of 2007. Thanks to everyone for the prayers during scan week & for safe travels home.
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