Max's medical information and some links to sites that we've found useful/informative.
Max has neurofibromatosis type 1 (NF-1). Bob will be trying to keep this page up to date following his treatments and MRI's. The site that Bob has found most helpful has been the NF home page. There you'll find definitions, links, bulletin boards and just a wealth of information.
I've also put together some more specific information on Max's diagnosis of NF-1 along with information on his most recent vision checkup. I have also created a page that shows what the doctors provided the details the drugs he will be taking and their possible side effects.
Max started treatments on August 24. He had his port installed and got his first treatment that day. While it was a long day, Max did very well. All in all, his induction phase went very well. His hair thinned a little bit and he lost deep reflexes in his legs but these side effects were sort of expected and could've been worse. The hair should grow back and his reflexes should return after he has been off chemo for a while. Max has met with the Commission for Blind (he is NOT blind) and they have helped provide him with some tools to help him see his course work better and also to adjust his position in the classrooms so that he is using his good eye more. Things at school seem to be going well but writing feels a little slow. He is receiving Occupation Therapy at school in order to help improve his fine motor skills as well as his speech.
Max finished induction October 26 and had an MRI on November 9. The reading of that MRI is here. These weren't the results that we were hoping for so we started talking about alternate treatments for Max. The treatment options presented by his Dr. at CHOP are summarized here, but that is not the complete picture. After we met with CHOP, Max had a follow up eye exam where his vision was tested and appeared to have improved to 20/100 and 20/60 (used to be 20/250 and 20/100). We then made a trip to see the doctors at Robert Wood Johnson for a second opinion on the next course for Max. After that and another talk with his Dr. at CHOP, we decided to keep Max on his original protocol of Carboplatin and Vincristine. He started his first of 8 maintenance rounds on December 14 and will finish January 4. He has an MRI on Jan 11 and an eye exam Jan 13. We're hoping that things will remain stable and maybe even improve. If that is the case, Max will start another 4 week cycle on Jan 25 followed by another MRI and eye exam. If things don't go as planned, Max will probably start Temodar around Jan 25.
December 28, we were at CHOP for his third maintenance chemo. His blood work still looks good. Max hasn't been sleeping well at night and this could be a side effect of the Vincristine that he is taking. We're going to wait and see if it gets better over the next week - maybe it is just the excitement of Christmas and all the new toys. If not, we'll consider giving him something to get him to sleep through the night.
January 4 - Max still has thrush so he is going to keep taking the medicine for that for one more week. He is also still not sleeping at night so they've suggested using Benadryl at night to see if that will help him sleep through. In case it doesn't work and he gets hyperactive or it works too well, we'll wait to try the first dose until Friday evening. Max has been very receptive to the sedation drugs so far so it will probably work ok for him. They've also suggested using it the morning of his MRI next Tuesday to keep 'out of it' until after his MRI so that maybe he won't complain too much about not being able to eat. His last solid food has to be consumed by 4:45 am but he can have clear liquids until 10:45 am. Max's blood counts were better than last week (which were also good) so still no worries there.
January 13 - Max had an MRI this past Tuesday and we were back today for an eye exam. Today his vision tested at 20/400 and 20/70. The left eye is significantly worse than other testing by the same doctor but matches what Dr. Chen found over the summer of 2004. In talking with the doctor after the tests it did not seem like Max was cooperating as well as he did during his last test. I told him that I had not noticed any significant change when Max reads the temperatures off the weather map in the mornings other than he reads double digit numbers correctly now (forty-four instead of four and four). As we were leaving he tried to test Max's peripheral vision in his left eye and Max did terribly mistaking 5 fingers for 1 even though he had moved his eye to stare directly at the Dr.'s hand. While it was disheartening, it really is where we thought Max was over the summer. Max seems to be doing quite well with the vision that he has so with the MRI findings, we'll be starting Max's chemo again Tuesday, January 25.
January 25 - Today Max started his second round of maintenance and it will last 4 weeks. That'll be followed by an MRI and follow up eye exam. His dose of Vincristine has been cut in half for this round because he has had some pain in his left knee. He's going to start taking a prescription antihistamine at night to try and help his insomnia.
February 2, 8 & 15 - Max continued to have pain in his knees and started having a little trouble walking correctly so they stopped his Vincristine for the rest of this round. He has had some trouble staying asleep all night and winds up tired during the day. We tried Benadryl and also Hyrdoxyz but both only worked for a night or two before losing effectiveness. On Feb 13, we started giving him Melatonin at night. He was getting 1/2 of a pill, half of the adult dose, but we're going to go to a whole pill tonight. Max doesn't seem to have any problem swallowing the pill. We'll try this for a week and then possibly change to a stronger prescription sleep aid if it doesn't work out. Max has an eye exam and MRI next week and doesn't see the doctor again until March 8.
This is a link to Max's private documents. Ask Bob or Tracy for the user name and password. It contains his blood counts and a history of the drugs he is taking. It is more for reference in case Bob forgets to take them somewhere that he was supposed to.