Saturday, January 21, 2012

Monday afternoon we headed to New York City for Collin's appointments at MSKCC Tuesday. Since Neya had no school Monday and we planned to come home Tuesday after the appointment, we brought her along this time so she could see where Collin would be going for treatment. We also told her we'd take her to FAO Scwartz so we could have a little fun while we were there. We checked into the Ronald McDonald House around 5:30 that evening. It was our first experience staying at a Ronald McDonald House. After we checked in, we were shown to our room, and then given a tour. The staff were extremely friendly and caring, and they really do so much to try to make your stay as comfortable as possible. There are kitchens where you can keep some of your own food in refrigerators, freezers, and pantries, and the kitchens are stocked with utensils so you can cook your own meals if you wish. There is also a community dining room where volunteers come in around five times a week to serve dinner to the families. There is a library, where some different classes are offered. There is a playroom with toys, books, art supplies, video games, computers, etc. There is a patio where during the summer they have cookouts. They have teachers available to help the kids and siblings staying there. People have to travel from all over to different hospitals in New York City for care, so it's nice they have a place to stay while they are there. 

Unfortunately, I'm not overly fond of traveling, which combined with my anxiety about why we were there, had me feeling more upset about the negatives than thankful for the positives, so I was in a mood for the whole trip that I had a hard time pulling myself out of.  Our room, although large, had two single beds and a fold out sofa, and was like a bare bones dorm room, so it lacked the comforts of home, or even a hotel room. You are expected to clean the room and launder the linens before you leave, which I have no problem doing, but it was difficult to find the time in our schedule to do so since we were there for such a short time. Navigating through the city, train station, etc. with two kids, a stroller, and suitcases, and dealing with the cold and rain while doing so wasn't very fun. I am so familiar with Hershey Medical Center, their staff, and how they do things that I know what to expect; being in a different hospital where I don't know my way around so well and am not familiar with the staff or their procedures was stressful to me. I'm sure I'll become more familiar and comfortable each time I make the trip, and knowing what to expect will make things easier, but it's not a trip I can do by myself with Collin; I'll definitely need another adult with me. And in the end, we spent such a long day at the hospital Tuesday that we never did get to go the the toy store and have a little fun before we left, which left all of us disappointed.

We had to be at the hospital at 8:30 Tuesday morning, and Collin's MRI was scheduled for 10:30. Of course Collin wasn't able to eat after midnight because of the anesthesia, so we were all very hungry (the rest of us didn't eat breakfast because we didn't want to eat in front of him). He was finished in MRI around 12:45, and after some bloodwork, we were in the waiting room by  1:30 waiting for the doctor to meet with us. Unfortunately, she didn't meet with us until 4:45, so we spent all that time sitting around doing nothing. We didn't leave the hospital until around 6:00 pm. Then we caught a cab to Penn Station, took a train back to Edison, and drove the two hours home. We finally got home about 11:30 Tuesday night. Needless to say, it was an exhausting two days.

I don't remember if I've explained this treatment before, so forgive me if I'm repeating myself. Researchers have found that Collin's cancer, medulloblastoma, has a certain protein, called GD2, on it's cells. There is an antibody called 3F8 that attaches to the GD2 protein. They take the 3F8 antibody and combine it with radioactive iodine. Then it is injected into the omaya reservoir, which is like a port in Collin's head. The radioactive antibody travels through Collin's cerebral spinal fluid, attaches to any cancer cells it encounters, and then delivers the radioactive iodine to the cell, radiating and killing it. The radiation only penetrates about one millimeter, which is why Collin had to be at "minimal residual disease" for it to work (it wouldn't be able to completely radiate a tumor larger than 1 millimeter in size). The round of chemo in November and the Gamma Knife procedure in December accomplished this, and the metronomic (daily) therapy that Collin has been taking at home has kept anything from growing back so far. The 3F8 treatment has been used on kids with neuroblastoma for about twenty years; it has been used on medulloblastoma for about five years. The doctor said there has only been one other child that she has used this treatment on who had the same subtype of disease as Collin (similar age at diagnosis, metastasis to the spine, etc.) The good news is that two to three years later, that little girl is still alive and doing well.

It looks like Collin will start the 3F8 treatment at MSKCC on February 28. We are hoping the omaya reservoir can be placed in the  very beginning of February; thankfully that can be done in Hershey by Collin's neurosurgeon. Then he will have to have a specific kind of CSF flow study at MSKCC to make sure that his cerebral spinal fluid circulates through his brain and spine well enough to distribute the antibody. I think we will have to stay in NYC for a few days when this test is done. Then we will travel to NYC on Monday February 27, and spend a long day at the hospital on Tuesday February 28 for the first injection. We will have to remain in the city for a few days after the first injection, because they do PET scans and other tests at certain intervals for 48 hours after the first injection. Hopefully we will be home in time for Neya's birthday on March 2. Then we will travel to NYC on Mondays, spend Tuesdays at the hospital, and hopefully come home on Wednesday every week of March. Then about a month later we will have to return to NYC for another MRI.

This is a lot of traveling, and I know it will be exhausting. During this time, Collin will be taking a break from his physical, occupational, and speech therapy so that we can rest for the few days at home between each trip. My parents will fly in and stay with us for the first two weeks of treatment; that way Bill and I can take Collin for his first injection, and they can stay with Neya so that we keep her schedule and routine as normal as possible. Then the following week, my parents will go to NYC with me and Collin, so Bill can stay home with Neya and work. For weeks three and four, my friend's dad will go with me and Collin so that Bill can stay home with Neya and work, and then for treatment number five, Bill, Neya, me and Collin will go to NYC together.

While Collin is having this 3F8 treatment, his tumor tissue for his brain surgery in 2010 can be tested for another protein which has been found on only some medulloblastoma tumors. If his tumor has that particular protein, there is another, similar treatment at MSKCC that he can do after this treatment. It is our hope that one or both of these treatments will allow us to at the very least postpone complete brain and spine radiation; ideally these treatments would eliminate the need for cranio-spinal radiation completely. This week has been hard for me; besides our traveling and trying to work out the logistics of regular trips to NYC, there has been some more losses and hard news for other kids I have come to know. Please pray for Clinton's family as they learn to cope with his loss (http://www.caringbridge.org/visit/clintonmilliken), and for sweet Bree who's scans this week show what is probable recurrence/disease spread (http://www.caringbridge.org/visit/breehaga). Also, please pray for little Grace, the two year old niece of a close friend of mine who was recently diagnosed with an aggressive form of leukemia. I hate cancer.