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 @ 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.

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.

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).

The Very First Chemo for Max

Max and I left for CHOP at 5:30 am and got there a little bit before 7:30 am. We beat everyone to the oncology floor but Max found a book and played with the Thomas the Train set that they have setup. We met with the nurses in the oncology unit and talked briefly about what would be happening. There was some confusion as to how Max would get today’s chemo treatment but we got setup so that they drew a little blood from his middle finger with just a prick test and then we headed down to the Pediatric Outpatient facility to have his port installed. Max got his does of Versed at about 9:20 am which made him very thirsty but he was able to focus on Dora and Blue's Clues until about 9:35 am when they started the IV in his hand. He whimpered a little bit but he really didn't think it was too big of a deal.

The surgeon came in and explained how the port would work. His explanation was very helpful. He explained that they would make two incisions, one on his chest below the collar bone and another by the jugular vein in his neck. The run the line from the lower incision up to his neck and then back down to a vein by his heart. The port will be on the right side of his chest (of course, I had him practice with a dressing of gauze and first aid tape on the left side!). The bump is very small. A woman whose daughter is sharing the recovery room with Max has breast cancer and she was willing to show us her scar and the bump. The scar is actually more noticeable. The doctor explained that the port is NOT permanent but could typically be left in place for a year or longer. They would not leave it in forever because of the risk of infection but if he needs it for an extended period they may have to pull the existing port and put a new one in later. Time will tell.

The risks involved in today's port placement are infection, damage to a vein, an air embolism. The doctor explained the steps that they took to minimize these risks by using a sterile techniques, an ultrasound and fluoroscopy to guide them inside Max's chest, and extremely small needles.

Max was taken down the hall just before 10:00 am is expected back in about an hour. They believe it will take about an hour for him to wake up and then we will head up to oncology for his first chemo treatments. So far he has been a real trooper. He actually thought getting his finger pricked to draw blood earlier was a little ticklish.

Max didn't come back until 11:40 am. They said everything went fine. He was still asleep but stirred when they took some of the tape off of him and hooked him up to the monitoring equipment in recovery. He went right back to sleep though. The dressing by his neck is fairly small. The nurse said that he has some liquid skin and some butterfly bandages there. He’ll need to keep the dressing on for 2 days and leave the butterflies on until they fall off. She said it was okay to leave the dressing on longer if he is likely to pull the band-aids off. The dressing where the port was placed is somewhat larger and will need to remain in place for 7-10 days. That has internal stitches which will self dissolve. The nurse said he is pretty thin so there will be somewhat of a bump in his skin. She also said that the numbing cream will make it less painful for the needle stick but that he’ll still feel it go in. Right now he is sleeping and they expect him to wake in about an hour when we’ll take him back to oncology to start his treatments. They said that we can use a wheelchair for that trip because he’ll still be groggy.

Max finally woke up enough to drink a juice box and eat some cheerios at 1:30 pm. It took a while to get him unhooked from the IV and get him dressed. He wanted to make sure he was going to see the metal ball display in the lobby and play with toys but he is essentially completely drunk. We got him a wheelchair to come back to oncology and met with Dr. Belasco to discuss some things before treatment. She said that any hair loss would be temporary. She also corrected a misunderstanding about deep tendon reflexes – those problems will reverse themselves once treatment stops. We’re supposed to call them with any issues at all so that they can keep Max free from any issues related to his treatment so that he does not start to see it as a problem. This week he has been asleep but in the future he should be able to play with things here.

Dr. Belasco said she had consulted with a neuro-psychologist and it was her opinion that he should have a full neuro-psych profile because he may not have Aspergers but something related to the NF-1 which is very commonly associated with learning disabilities, social problems, etc. Much like Aspergers. She said to try first with the school but that CHOP could do it if need be. It needs to be done by someone familiar with all of the diagnoses and would different than the normal school test which is geared towards IQ and attention problems.

Dr. Belasco also suggested contacting the Commission for the Blind which is a lot like Early Intervention but geared towards addressing Max’ visual problems. They would be able to make suggestions that would improve Max’ learning at school This could be as simple as where the teacher should stand in relation to Max to getting him any mechanical aids that he needs. She thought that they might suggest that he learn Braille as a second language – if only to help him educationally since he already has exposure to Spanish. That was just a thought that she had, she said that they would be the best source of information and is yet another resource that we can try to tap early for Max before it becomes an issue. Her greatest concern educationally was that he continue with special instruction for Aspergers but finds out later that something else is the cause. She said it is not urgent but the neuro-psych evaluation should be done.

They gave me a sample of the cream that will be used to numb his port and told me that it could be put on in the parking garage. It only needs 15-20 minutes to be effective. There could be an issue with skin irritation if it is left on for longer than 90 minutes. If we forget, there is a spray that can be used right before hand that works immediately.