Monday, July 30, 2007

No Change in Treatment ... yet?

Today we had planned on leaving by 9:00 but that wasn't critical so after gas, caffeine, and cash it ended up that we hit the road at 9:30. We made great time until we were about 11 miles away when we stopped dead for a little while. The accident that was responsible was on the other side of the road and looked to be an SUV that had flipped. The firemen we're looking at their handiwork in cutting the roof clean off the vehicle and the tow truck guys were trying to figure out how to winch the wreck onto the flat bed. It looked like the north bound lane was going to be there a while. Even with that small delay we got here by 11:30 am and registered with oncology.

Max got his patient bracelet and triaged right away (4' 9.5" and 102 lbs) and then talked to the art therapy person about the book of the week. This being Monday Max got to pick the new book, read it, and come up with the question that all who will follow him will need to answer. As a reward he chose the 2nd book of the Harry Potter series on audio tapes. We'll be starting that on the way home, I guess. Max got his IV started and then we headed downstairs for lunch. In the car he had outlined his lunch plan for me a number of times and it was to include a six piece chicken nugget happy meal with french fries and a low fat milk … and a toy, can't forget the toy. He was pretty excited about all that and was pretty shocked to see that the entire McDonald's space was in a shambles as it was being renovated! There was note on the door that said they would be closed July 29 to Aug 1. He was like a deer in the head lights - far too shocked to process what happening and get angry he just stared in disbelief. Workers were milling in and out and we were in the way so I got him to move and we talked about what we could do instead. That went far better than I had thought with only one "Why does my WHOLE day have to get RUINED by YOU!"

On the way to the main hospital cafeteria we ran into his endocrine doctor. While I was talking to her Max took off so I had to leave before I could catch her up. I like her and felt bad for ditching her but she understood. The new plan for lunch went pretty well with Max eating everything without a fuss but breaking wind quite loudly at the end. Thankfully it was loud in there and no one could pinpoint the source. We got to his ophthalmology appointment about 20 minutes early but had to wait a little while to get in. This place is always incredibly crowded. The visit went as expected but I learned the correct name of the new issue is "dense bilateral hemianopsia". I found a very cool site at the University of Indiana ( that explains hemianopsia and the eyes in general. If images of cadaver brains make you squeamish, you might not want to visit (just brains, not their containers). In a nutshell, Max has lost almost all peripheral vision to the outside from each eye and this is more commonly referred to as tunnel vision. I had always thought of tunnel vision to be similar to looking through two paper towel rolls but I learned today that it is includes the area between the two tunnels as well. The thing for us to keep track of until our next visit is Max getting clumsier about walking into things.

After ophthalmology we went back to oncology where we knew we would have wait. There were two other very young children in the play area and Max went right up to the two Moms who were there talking and said, "Do you know what the book of the day is?" It is a real struggle for him to remember not to interrupt but here kids are forgiven an awful of lot social missteps. Anyway, Max was able to hijack the conversation and let everyone know that he had not only selected the book of the day but come with the question. He was also more than willing to help figure out the answer if there was any confusion. He retrieved the book for one of the Moms and she prepared to read to the two toddlers. Max had to get closer to see and hear the story, which had to be less than 40 words and he had read just a few hours ago, and in the process tried to walk through a wagon (wagons are often used as strollers/wheel chairs for toddlers). He ended up surviving just fine but everyone was terrified (including me) by how he reacted to what seems to have been just a fall to his knees. We did meet with his oncologist and much to my surprise she suggested that what we stay with his current treatment rather than change courses. This was good news as Tracy and I are both more than concerned about Max developing Leukemia regardless of how slim the chances. The thinking now is that the MRI that showed growth and movement in the tumor back in April was ahead of the impact to Max's vision. It could be that the nerves were already compressed but weren't suffering yet. What backs up this thinking is that the two eye exams that are 2.5 weeks apart show no significant change (yet do confirm a change). If the tumor had just started to damage the nerves they were expecting to see the damage progress, even in such a short period of time, as the area affected by this is crucial to both eyes and something more was very likely to have started going wrong. This means that the current chemo is likely to have stabilized the tumor. We don't want to wait too long to confirm this so Max will be scheduled for a follow up MRI and chemo/shots visit Sept 17 in Philly and a follow eye exam the following week on Sept 24 also in Philly. The only downside to the news is that while we thought he was going to take two weeks off of his treatments, instead Tracy will spent tomorrow coordinating insurance, hospitals, and referrals so that Max can get chemo on the two Tuesdays that he'll be on Block Island. Tracy was able to learn today that the hospital nearest to the ferry is in-network for our insurance so she just has to get contact information for everyone tomorrow so that they can talk and work out his treatment. Tracy and her Dad will take Max on the ferry back to the main land the first Tuesday and then I'll do the 2nd week (I'm only going up Aug 4, 5 and 11-18). With any luck it will all be arranged tomorrow and will only impact half a day for everyone. The next update will probably be from Block Island.

Thank you all for the love, prayers and keeping Max in your thoughts. We are all truly grateful.

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