The Good, The Bad, and The Good

Today we have some bad news but that is tempered with some good news. We'll start with good, then onto the bad but then back to the good. First, if you haven't already heard, Max was able to do his follow up MRI on April 11 without sedation. (His MRI was moved up a month because he had complained of some eye pain that had no visible source.) Doing the MRI without sedation is a huge achievement for him and makes future scans far less worrisome. This means he doesn't have to fast for 8 hours before scans and he doesn't need 2 days to recover from the drugs. It is remarkable that he can do this because he needs to stay absolutely still for an hour and half in a tunnel that is many times louder than the Holland Tunnel with all the car windows open. Next time we'll look into bringing music for Max, as that appears to be an option, as well as better reading material for Bob as he was left reading very old editions of Vogue since laptops aren't allowed in the scanning room.

Onto the bad news; the scans showed that the tumor on the left side of his hypothalamus is more active and larger in size. Today we met with his oncologist at Children's Hospital of Philadelphia (CHOP) and talked about what this means for Max. The long and the short of it is that there is very little change in Max physically but we still need to see the eye doctor to confirm this. His vision check with the oncologist went worse than Bob had expected because Max didn't really see anything out of his 'bad' eye. Part of the problem though is that waiting for a physical change means waiting for a loss of vision or a significant change in behavior, hormone, or body function. We all agreed that we did not want to wait for that so we started talking about possible treatments. (We did meet with his neuron-ophthalmologist later and found his vision to be slightly improved - go figure)

This brings us back to the "good" news as there is a change in options from when we talked about these things in November of 2004. The options from before still exist but one that is new (or wasn't appropriate for discussion last time, not really sure) is a chemotherapy drug called vinblastine (also called velban). This will be a once a week therapy that is essentially an injection. This is different than before, when he was getting a drip, because it is an intravenous injection so there is no long wait while the drugs go in. After his blood work is done - normally 20 minutes if memory serves - there is just an injection and then we go home. Our hope is to be able to accomplish the majority at Lehigh Valley so that Max can go to school for most of the day on Tuesdays and it won't be the disruption to his life the previous chemotherapy was. We choose this option over the others as there is no chance of leukemia as a side effect. Other bonuses are that while it will likely affect his reflexes it is unlikely to be as bad as last time, his hair is likely only to thin a little bit, and finally the most likely side effect will be constipation which he dealt with before just fine. The rate of effectiveness is only 50% which is on par with the other favored treatment option which was Temodar. Temodar would've been even less of a disruption as it is an oral med that he takes at home but there is a risk of leukemia which we weren't ready to chance yet.

At the end of 3 months we should know whether or not this course of treatment is effective or not.

It is getting late and I really do want to get an update out to everyone before it filters through the phone chain and gets distorted. I think I've covered everything but Tracy is already asleep so you're getting this un-reviewed and un-edited. The important thing to take away is that Max is not in any pain and that the treatments that we started today are likely to have less of a negative impact on his life than his prior 14 months of chemo. Oh - he'll be missing the end of Art class at school which he assures us is fine by him.

Lehigh Valley - March 2007 Monthly Visit

Wow - it has been too long since I've update this site. Sorry but things have been busy and Max is doing well. His November scan was stable and his eye exam was fine!

Max had shots and a blood draw at Lehigh Valley today. The blood draw was so that his growth factors could be checked to see if the Sandostatin is still effective enough. Max, the nurses, and the social worker there sang "Part of Your World" from the Little Mermaid while he got his shots. There were some stumbles on the exact lyrics but all in all, it was NOT melodic. It took Max's mind off the shots and that's what counts. He chatted with the nurses for about 30 minutes after the shots about things like Peter Pan movies. Oh, and he looked at pictures of a cat in a toilet bowl - not sure what that was about but he certainly thought it was funny.

Max has been doing very well with the shots which are essentially his only treatment now. He is getting new glasses soon but that is just to update his frames and lens' prescription. We follow up with an MRI in May. If he's stable I think we stay on 6 month follow ups. He also has an appointment with Endocrinology in June when we'll find out if his Sandostatin and Lupron injections are still effective.

MRI # 11

Today Max has his MRI at CHOP in Philly. He is
scheduled for a 10:00 am scan with a 9:00 am arrival so
we tried to leave by 6:00 am in case we hit traffic. We
didn't make it out until 6:15am so Bob didn't get coffee
but we made it deep into Philly before we hit traffic.
We got here at 8:30 and we were checked in by 8:40 am.
Max is now 96 pounds and 4' 8" tall. Although we missed
the traffic, for the most part, on the highway, there is
some traffic here and it looks like we'll be delayed at
least 15 minutes. Not a big deal but we'll see how
close that estimate is when we get there. For now, Max
has decided that he is tired and is taking a nap
(several people have expressed concern that he's already
sedated because he's sleeping so soundly).

Max got sedated and went into the scanning room at about
10:30. They seem to think it will take an hour but
experience tells me 90 minutes. Anyway, I ran
downstairs and grabbed something to eat quickly and now
I'm in the MRI waiting room sort of hanging out until
Max is done.

It was actually a little more than 90 minutes. Max was
snoring so they had to intubate him via his nose to make
sure he was getting enough air and to stop the snoring
because it was making the images blurry. That must not
have been comfortable because it was sort of long but
thankfully at dinner tonight he had no memory of it at
all. He also had to get an extra dose of meds right at
the end so he was a little grumpy. The grumpy turned to
mean when we had to wait 30 minutes for a wheel chair
and he started saying, pretty loudly, "This is
ridiculous and it is ruining my plan. It is not what I
expected."

In any event, we got home around 5:00 and Max slept the
entire trip. He can't go to school tomorrow because he
won't have metabolized the medicine until around noon
tomorrow but otherwise he seems to be fine. We go back
Thursday for an eye exam and to find out how the scan
went.

MRI Review with Oncology follow up

Today we had a 9:00 am appointment to review Max's MRI with the oncologist as well as have him checked out. Not having been to the oncology clinic for a while the first thing that we noticed that was different was a maintenance woman who wiped down everything (chairs, doorknobs, blood pressure cuffs, etc.) after it was used. I had noticed that the woman who checked us in used a hand sanitizer after doing the paperwork but I didn't think too much of that. After Max got weighed, measured and had his blood drawn, we went to play area and noticed that there were far fewer toys. Max headed right for Kim, who runs the Child Life Clinic, to see what the story of the week was. Kim, among her other duties, dispenses prizes to kids who get the question about the Book of the Week correct. We read a book about a rain forest and Max got the question right but this time the prize was stickers. Max was clearly disappointed but actually handled it pretty gracefully. It seemed odd because Kim knew Max and knew that he always picks a car out of the toy bin (which is mostly McDonald's, Burger King, etc. Happy Meal Toys and pencils) but that wasn't offered.

I thought that maybe August was "Extra Extra Over the Top Germ Free Month" and that Scrooge had taken over the toys but I soon found out what was going on. When we saw Judy, the nurse practitioner that we first met at Lehigh Valley, she asked if we had gotten "the letter." At Lehigh Valley that always meant some kind of cool activity (talent show, meet Santa, meet the Eagles players) but at CHOP it means something is wrong. Anyway, the letter stated that there had been an outbreak of VRE which is some sort of nasty that is not normally harmful but can be a big problem for compromised immune systems. It is easily transmitted by contact but can live off of a person (on a toy perhaps). As a result, there are hand sanitizers all over and they removed the majority of the toys. One other thing that was different, as a result, was that Max was given a coloring book, crayons, and a goody bag that had some additional prizes but was 'sealed' with a sticker. The intent of the bag, I believe but could be mistaken, was to have the kids take home a couple of toys since there wasn't much to play with. As Max figured out, and I'm sure others did as well, the 'seal' was easily broken and the toys were quite playable. I was able to get Max to change to coloring a picture for Mommy pretty easily and we colored while we waited.

The wait really wasn't too long but we spent some of it at the Art table with a young boy who seemed to be there with his grandparents. I'm not sure what was wrong but his temper was very short and he said some pretty mean things to his adult companions. After the first such comment Max looked at me and said, "Wow, that's rude." loud enough for all to hear. Horrified, I leaned over to Max and whispered (praying that he would not repeat this) "Please don't say anything more about him until later, something is wrong, ok?" He astounded me by gently pulling away from me and giving me an exaggerated wink. I was so grateful but also curious as to where this boy was when we marched in two parades over the summer and he could not stop yelling about how this marching was ridiculous and he was calling the police because I was being a bad parent. Max is quite like a Forest's box of chocolates.

Finally, the good news! Max's scans were stable and that, as you've already learned, is good news. Of course we went over where everything was and how it is pretty incredible that his tumors are so close to such important parts of the brain (then again it is difficult to find a part of the brain that is expendable I suppose). The only sort of bad news is that his reflexes are still mostly gone. That is the result of one of the chemo drugs (vincristine) but she said in time his reflexes really should come back.

The plan now is to go back in November and have another MRI, an eye exam and a follow up oncology visit. If all continues to be stable then we will move to a schedule of repeating the visits every 6 months. That'll be a welcome change. He'll continue his monthly hormone shots and Endocrinology is likely to want to see him at different times but those visits aren't nearly as long lasting

MRI @ CHOP, Shots at Lehigh Valley

Today Max had his MRI scheduled for 9:30 am and we were to be here at 8:30. We left home at 5:35 am (after some debate about going down the night before but finally deciding it wasn't worth it) and we got here at 7:20 am. Unpredictable Philly traffic can be so much worse. It worked out though because Bob got to talk to everyone about the problems we had last time with Max taking two days to metabolize the drugs (and missing extra school) and also about the confusion with switching to General Anesthesia from his past sedation. There is more involved in GA that we didn't know about including a pre-visit down here to discuss things and meet with the Doc that would be with him during the scan. After our talk, they decided this morning to try a slightly different sedation method so he was given liquid versed to start. This is the same as his very first two MRI's. That got him groggy and silly (if you have heard Max tell jokes recently, I can assure you that it can, and does, get worse with meds). They are also planning on giving him additional meds with about 30 minutes left in the scan rather than a larger does at the very end. Finally, they're going to run a full liter of fluid through him during the scan to see if they can't jump start the metabolizing of the meds so he isn't mean for so long. Of course, I stopped bringing a complete change of clothes this time. Here at CHOP he gets special pajamas for the scan but keeps his own underwear. Hopefully Max won't have to go Commando for the rest of the day because I'm certain that everyone in the elevator and at Lehigh Valley would be told of this exciting new fashion.

Max did manage to make it through the scan dry. He slept off some of the drugs for about an hour and then we ran to the bathroom. We were able to make our appointment at Lehigh Valley where Max talked through his shots with only a brief pause. He's still pretty unsteady and very chatty but otherwise seems ok. We'll see how tomorrow goes.

Shots at Lehigh Valley

We had a 2:00 pm appointment so I picked Max up from school at 12:35 and we went home to put some numbing cream on his butt. We got to Lehigh Valley by 2:00 pm and we played with Play-Doh while we waited for his injections to be prepared. When we got his pants set so that he could get his injection, the nurse said, "Aren't we doing two shots today?" Of course, I had only applied numbing cream to one cheek so I had to answer, "Yes, but I'm an idiot." because I'd forgotten to do both cheeks. We decided to put the Sandostatin in the numbed cheek and that actually went well. Max tensed up but watched his movie, Monsters, Inc., through getting stuck and receiving the medicine. The same for the Lupron shot in the other cheek that hadn't been numbed. I'm grateful that he is so brave for the shots but also a little saddened that he's had the opportunity to get so used to everything.

Eye Exam, MRI review, Oncology follow up at CHOP

Today we had to be in Philly at 10:30 so we left at 7:30 to be safe. I had forgotten how bad traffic on 206 can be so we went the scenic route through Califon and High Bridge. Much nicer but a little bit longer. We arrived early for our appointment and Max got to play with Ben and his younger brother (two new friends). He was really great about sharing his L-Max (hand held electronic game) and his new Chitty Chitty Bang Bang car. I was pleasantly surprised. We learned from Dr. Liu that Max's MRI on Tuesday showed a stable tumor and his vision is also stable. He actually tested a little bit better with his left eye, 250/20 up from 300/20 last time, but they felt it was probably behavior related and he probably was always at 250/20. He is calling it stable and would like us to come back in 6 months but we have to check with his oncologist this afternoon to see if we're making it 3 months.

Max is now at 74 pounds and stands 4'7". I don't think that is changed from my last report but I can't find that right now.
It is now 1:10 pm and we've eaten lunch. We're going to go and do some homework while we wait to see his oncologist.

Max would like to say, "I hope that everyone that is sick gets better. And I miss all of you."

We got to see Dr. Belasco after doing some homework and she said that his MRI was stable. She agreed with Dr. Liu that eye exams could be done every six months from now on but he'll have another MRI in 3 months. We talked a little bit about the problems Max has had with sedation and we'll be switching to a modified General Anesthesia for his next scan.