All of us passed out relatively early yesterday. It was a long day and all of us by 8 PM were barely hanging on. As soon as we closed our eyes, it was 9 AM. Feeling refreshed, we headed to the Clinic. As mentioned yesterday, we are staying at the Children’s Inn. The clinic is only one block from us… no, it’s more like 100 M or so.
What seemed funny to me was yesterday, when we were first heading out, the nice lady at the reception area, that the shuttle would be here in 5 minutes or so. When we asked where the clinic was, she said, “Oh, it’s just across the street”. Anyways, this morning we headed to the radiology clinic and started the MIBG scan. Two technicians, Delise and Katrina were beaming at Maya and it wasnt’ long before they were Maya’s best friends.
The scan seemed long to me. Something like 2 1/2 hours. Both Delise and Katrina were amazaing. Both of them held Maya in position in awkward positions, both at the head and at the feet for well over an hour. Their dedication to their patients were comforting to say the least. For your kindness to our little girl, thank you Delise and Katrina. It wouldn’t be too difficult to just do what’s required of you. You didn’t have to crawl up on the machine and hold Maya and comfort her was extraordinary. Even so, Maya squirmed around and the first scan did not turn out as well as we had hoped. Of course, the second scan for her mid section, Maya fell asleep. We are likely to sedate Maya for the subsequent scan, which if all goes according to plan should be in another 4 weeks or so.
One thing that I found interesting here is that NIH has the equipment that can directly correlate one type of scan to another. For example, they can take a CT scan and directly map it to the MIBG or X-ray(I think?) What this means is that by matching one scan(say CT) to MIBG, they can get much better visual than one can by looking at the scans individually. Why is this important? The scans provide different information. For example, CT provides the gross visual of the body. MIBG shows the area where there is cancer activity. So, by merging the two together, you can get a better understanding of what the tumor looks like and how much activity there is. (May not be exactly correct, but I think it gives you some idea why being able to merge the two provides more information)
After the scan, we met with the anathesiologist for prescreening. Dr. Mo Yousef is a young anathesiologist. All I can think of was that he looked like Young Joe Rogan (UFC MC) very unassuming and talked to us in a very unassuming way. We liked him right away. Maya? Not so much.
The last part of the day was signing consents and meeting with Dr. Javed Khan. He is a researcher who studies “Oncogenomics”. We had agreed to participate in a study which looks at the genetic and proteomics of children with neuroblastoma (and other types of cancer). As you know, our position has always been, always learn from the patients. If nothing else, honor the children by learning as much as possible. And since participating in the study does not add any additional discomfort or significant risk to Maya, we agreed to the study.
And somehow, we spent all day in the clinic and were freed from the confines of the hospital setting. One benefit of driving here is that we are mobile. So, we spent the evening having dinner downtown Bethesda in what is comparable to the theatre district in Toronto; lots of restaraunts and night life. Oh, I thought I got ripped off… I had to pa y 4 dollars parking ! 🙂 We were also lucky enough to catch the new Harry Potter. Both Maya and I loved it. Indira fell asleep.
Tomorrow morning, we are heading out to Ocean City. It’s about 3 hour drive. That’s OK. We’re here with nothing much to do and the choices were, take the city or take the beach. Not much of a contest to me. So, if all goes well, in the next twelve hours or so, Maya and I will be trying our luck catching Crab and . Indira may be sleeping under the sun.
Sunday evening, we will be checking in at the clinic for the procedure monday.