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.

MRI @ CHOP followed by Lupron & Sandostatin @ Lehigh Valley

Being somewhat tired from TR & Kathy's wedding this past weekend, Max and I headed down to Philly last night to stay at the Wyndham. I had recently gotten a new laptop (mine suffered some trauma when it hit the floor in Florida last month) and I did not realize that my new laptop had no built in microphone. That made using the mapping software a little bit harder but it seemed to be enough to get us where we wanted ... until we got to Philly where I needed it to find the hotel. This is the same hotel that Max and I tried to find at night a while ago and ended up driving around the Four Seasons. I set everything up before hand on the computer and things seemed pretty good. We got off at different exit than before but it put us closer to the hotel so that seemed like a positive step. Then I realized that we'd started at 15th, were crossing 12th and wanted to go to 17th but the computer had been quiet for a while. Turns out it was too busy figuring out a new route to say anything. I ended up having to turn it off because it kept telling me to turn left when I knew I wanted to go right ... stupid technology. Max and I ended up going in two full circles before we saw the tiny Wyndham sign at eye level. Everything else said Sheraton or was really high up. I'm still trying to figure out what went wrong but I'll be using the software again this afternoon to get us up to Lehigh Valley since we haven't traveled that route before. Hopefully it will do better where the roads aren't so close and stacked two high like here in the city.

Max had slept in the car for most of the trip so he was a little awake when we got to the hotel. He made light banter with the ladies at the front desk and had I taken him to the bar I'm sure he could've made a few more dollars (he made $2 at TR's wedding doing bar tricks). Max was asleep again around 10:30 and then we were both up at 6:30 this morning. Things went well this morning and we got the CHOP almost an hour ahead of time. That has worked out well as our start time was 9:30, it is now 9:33 and Max is already 50 minutes into his scan. I talked with the nurses about trying to give him enough up front to keep him down for the entire scan because last time he needed more right at the end and that ended up making him angry Max for a good two days.

When he gets back to this room our plan is to get him dressed and wheel him down to the cafeteria so that we can get some food for the road before we head to Lehigh Valley for his Lupron and Sandostatin shots. If we finish as early as I think we will I'll have to call them to see if they can take him earlier since our appointment there isn't until 2.

Since I got burned once before by typing a really really really long email and then losing it, I'm going to update you in waves today.


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Just a quick update ... the nurse just came in to tell me Max woke up and had to be re sedated. Should prove to be a nice long day.


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It took about an hour for Max to wake up and the trip to Lehigh Valley was pretty uneventful. Max slept and the computer tried to take me there in a round about way so I shut it down ... again. We ate lunch in the hospital cafeteria and ran into the nurses while we were there. Max was a little grumpy and very un-balanced so we took our time and I tried not to do anything to start him on a tirade. I let him get french fries and potato chips for lunch. I'm sure the nurses thought that was a pretty good lunch for a growing boy.

Max's sandostatin drug is a little different than the lupron shot. The sandostatin must be prepared and injected in a very short period of time so we got to meet the pharmacist today. His nurse thought the needle was way to big so we went with a smaller one. Unfortunately the whole process of getting Max on the table for his shot took to long and the drug wouldn't go through the needle. He didn't cry for the first poke but he also didn't get any medicine. After some work on the sandostatin, Max got his second poke this time with medicine. This is much thicker than the lupron and, in fact, the residue on his butt afterward turned into a crusty paste pretty much right away. Needless to say he cried but not very hard and not very long. He was very brave but also thought two was enough. It took some convincing to get him to take the lupron. He was already tired so there were a few more tears but again nothing too bad. I was amazed that he didn't even say anything for the first poke so I was very proud of him.

It was at this point that angry Max came out and started to lecture me about many things so we headed home. Thankfully he fell asleep. He's on the couch now but I suspect, as does Tracy, that he'll be home tomorrow because he just can't go to school that angry. On Thursday he and I head back to CHOP for his eyes and to talk to his oncologist about the MRI and how things are going. Max will need blood work in two weeks to see how the Sandostatin is doing and then he'll be on monthly injections of both drugs for a while.

Lupron & Sandostatin at Lehigh Valley

Max got his Lupron shot and additional blood work to check his hormone levels today. Sometime in the next week or two he has an ultrasound of his abdomin to get a baseline of his gal bladder and other organs in the event he suffers from the Sandostatin. Everything went well and Max is going to start Standostatin, get an MRI, eye exam and follow up with his oncologist the first week of May.

Discussion about Sandostatin (CHOP)

Bob met with Doctors Mostofi and Moshang at CHOP to talk about starting Max on Sandostatin. In talking he learned that Max has pituitary gigantism and this will be reclassified to acromegaly (also known as gigantism) when he gets older. They were able to find 5 other children that had NF-1 and were being treated with Sandostatin. Because the numbers are so limited there just isn't a lot of guidance for what to expect for Max since most recipients of Sandostatin are adults. The good news is that the side effects of Sandostatin aren't as bad as the other medicines he's already taken.

There is a 20% chance that Max will have trouble with his Gal Bladder. It is unlikely that he'd get gal stones. Instead it would be kind of a sludge that would cause abdominal pain and could lead to problems with digestion and moving his bowels normally. If this does become a problem there is medicine that can help. Unfortunately because he'll be taking Sandostatin for the rest of his life, if he does have problems with his gal bladder there is a further likely hood that he'd need to have it removed. Not horrific but certainly something he could do without.

The consensus is that Max's elevated growth levels are a result of the tumor around the hypothalmus and pituitary. His tumors are inoperable and because he is young and has NF-1 it is unlikely that he'll receive radiation - the other 'common' way to try and stop elevated growth levels from pituitary tumors. Unless his treatment for NF-1 changes or his tumors change significantly they believe Max will need to take Sandostatin for the rest of his life.

Prior to starting Sandostatin they want to take one more set of blood tests to be clear on his hormone levels. Also, they want an ultra sound of his gal bladder so that they have a baseline in case he does start to have trouble with his gal bladder. Max is set to see the doctors again near the end of June. They'd like him to start in May so that he has two doses by the next time they see him. Max will be able to get the Sandostatin at the same time as the Lupron so it shouldn't be too much of a change for him. Hopefully he'll make the majority stats this time around and NOT have any reaction.

Glucose Load Test Results

Bob talked with Dr. Moustofi today. The results appear to be what was expected and Max is likely to start Sandostatin treatments soon. Dr. Moustofi and Dr. Moshang want to meet with Tracy and Bob at CHOP on March 29 to go over the results and treatment options. Max doesn't need to attend so it shouldn't be too much of an impact. Dr. Moustofi assured me that there is nothing they aren't telling me, they just want to go over everything in person before treatments start.

Glucose Load Test, Lupron, Movie Day at Lehigh Valley

This morning started early, again, because Max decided to wake me at 4:45 am to find out what time we were getting up today. I must have neglected to tell him that we could sleep until 5:30 am. Our trip out to Lehigh Valley Cedar Crest was pretty uneventful. Route 78 going the other way looked horrific but our way was mostly clear sailing except for the truck that had driven through the yellow warning barrels and onto the Jersey Barrier. They already had two big construction trucks there with arrows on the back diverting traffic so it must have been there for a little while but the driver was still sitting in the cab of his truck chatting with the state trooper down on the ground. Can't imagine he thought that was a good start to his day either. Guess it really is all relative. We got here about 20 minutes early so Max got to play with his new Leap Frog hand held game. For 8:00 am in the morning, this place is pretty busy but also pretty organized. They give everyone pagers, just like many of the restaurant chains around here, so they don't have to announce names. We met Bert (Roberta) and she took us back to Max's room for the morning. He was pretty worried about things today but the numbing cream on his arm worked pretty well so there were no tears this morning! The hard part, as we sort of suspected, was getting Max to drink the glucose in orange soda concoction. Max shook with the first several sips and it looked like it would be trouble but Bert started counting to see how long he could sip for (and Max negotiated for two prizes since the drink was "really awful"). The whole thing took less than 5 minutes I think. We started the 2 hour timer and Max has been watching Nick, Jr. ever since.

We finished at about 10:30 and went to the cafeteria for a bite to eat since Max had been fasting since last night. They were in between breakfast and lunch but Max was able to find a banana, a piece of white bread, a bowl of cheerios, a container of milk and a couple packets of ketchup. While we were eating, Nancy from the 'normal' Lehigh Valley called to see what they were supposed to be doing for Max today. They knew about his Lupron but couldn't remember what they had told him they would do for the movie. Since we had forgotten to call them yesterday I offered that we would pick up the popcorn for the movies and be there at 1:00 pm. On the way over to the other hospital we stopped at a Giant to get popcorn and Target to get Max's prizes for the day. We made it with a little time to spare. Nancy came out to see what movie Max had picked but said she needed 5 minutes to tie up some work. Karen & Anne Marie took the opportunity to rush Max into a procedure room for his shot so that all he had to do was watch the movie. For whatever reason, Max wanted to lie across my legs so I sat on the stretcher in the room and he did lay across my lap - it looked ridiculous since I don't exactly fit on the stretcher but Karen stuck him and got the serum in before he really had time to cry. Still looked like it hurt but he didn't cry. First time for that and it was over in just a few seconds. What a change - he was really looking forward to the movie.

The movie was great and Max really enjoyed himself. He picked a Scooby Doo video that he has and everyone joined him in chairs and bean bag chairs. It was pretty comical to see. Even Dr. Phil sat for a few minutes and had a bag of Smart Food. They couldn't stay for the whole movie but Max kept shouting to everyone with updates so he was happy. He'd been looking forward to this for the whole month and it really made his day.

Ears/Eyes/MRI Reading/Oncology Follow up (CHOP)

Max's vision and tumors are stable which is good news. I had written for about 90 minutes when my computer crapped out and I don't have it in me to try again now, sorry. It was a very long day because we got stuck in traffic, missed the audiology appointment, ran long with our vision check and oncology had an emergency in the morning that set everything back so that we didn't get in to see Dr. Belasco until close to 2:00 pm.

The highlights were that Max was a really great kid today and very pleasant to be with. Tracy and I were both concerned about the results but his vision is mildly better and the tumors, size wise anyway, are unchanged. The MRI shows a slightly different blood flow through the tumors but they don't feel that is anything to worry about now. We go back in 3 months to repeat everything and we'll make up the missed audiology appointment sometime before that locally.

MRI (CHOP)

Tracy actually had to wake Max up at 4:20 for his shower. It was refreshing to know that he could sleep that late. He was kind of funny because he claimed to not know where he was. He was refreshingly nice this morning. Even when Tracy told him that she couldn't find his 'prize' for today and that he would have to wait until he got home, he maintained his good attitude. Of course at that hour there was absolutely no traffic and we only hit rain as we pulled into town so we were here at 6:20 am.

We met one of the most pleasant receptionists we have ever run into at CHOP (not to say they aren't all nice - she was REALLY REALLY nice). Sheila said that Max reminded her of her own son and told us a story about a chemistry set that his Dad gave him many years ago (I suspect he is around my age, not Max's). Everything was okay with the set and nothing exploded but it was nice to have someone to talk to that early. Max had gone around the corner and was laughing at something but he was all alone without a TV so we didn't know what he was doing.

We got to get setup for the MRI early and Max started his sedation at 8:00 am. Not sure what order they use for the drugs, but the first one is certainly psychedelic. He was sort of waving his finger with the pulse/oxygen monitor (glows red like ET) around in front of his eyes but was unable to focus. The second drug seemed to knock him out but while they were giving him the third and final drug he opened his eyes and stared at the ceiling (very small pupils at that point). He heard me ask if he was okay but took many seconds to answer that he was fine. Right before he lost consciousness he looked at the nurse and said, "this is how I wink" and he winked at her with only his left eye. That is something he is unable to accomplish sober - then it is more of a two-eyed blink. Not sure what to make of that but it was amusing.

The MRI went pretty well but Max started to wake up near the end and required a second dose of meds. That kept him asleep for more than 90 minutes after it was over and he was pretty grumpy. He slept for most of the ride home but was still pretty disoriented when we got home so Bob had to pick Gwendolyn up from school (Tracy can't carry our 80+ boy anywhere anymore).

Lehigh Valley Lupron Shot

I forgot to write this up originally but the day was pretty good. We learned that Lehigh Valley will be able to do the glucose load test for Max before our next Lupon shot in February. That's good news both for distance and because Max likes going to Lehigh Valley.