Max’s most recent MRI seems to show a 5mm growth in the tumor that is around his optic nerve. There is some uncertainty because in his May scans his head was oriented just a little differently so the pictures between the two scans can’t be lined up as accurately as one would hope. Comparing the tumor in question to his February scans there doesn’t seem to be as noticeable of a change. Unfortunately, that comparison was done only by the doctor and I, not the radiologist. The radiologist has far better tools for matching things up. Because of the location of the tumor, if it is growing it could further impair his vision but his vision exam showed no change and, oddly enough, was actually a little better than May. Rather than start chemo right now, he’ll go back in 6 weeks for another MRI and vision exam. If he is stable, he'll move back to visits every 3 months otherwise we'll have to decide on treatment or just closely following things.
Showing posts with label CHOP. Show all posts
Showing posts with label CHOP. Show all posts
Friday, August 26, 2011
Thursday, July 12, 2007
Questions Arise
Today could have been better on a number of different levels but it also could've been worse. We had gone into today expecting to essentially get a rubber stamp at Children's Hospital in Philly that Max was doing well with his current chemo treatments and find out when Max would get schedule for surgery to put an access port in to make setting up his IVs a little easier. We had good reason to believe this as we had learned that the MRI Max had on Monday showed him to be stable. Unfortunately, that was only part of the picture. We learned during our visit with his neuro-ophthalmologist that Max appears to have had a fairly significant loss of his peripheral vision.
The apparent problem with the MRI is that it is not as detailed as one might think. Don't get me wrong, it is a truly amazing work of science and medicine. The alternatives of CT Scans or exploratory surgery for Max, especially given that he has had more than a dozen MRIs now, aren't even imaginable. Even so, the MRI gives a somewhat broad picture of what is going on in Max's head because there even millimeters matter and some of those millimeters are incredibly significant. While it is possible to see the swelling of Max's optic nerves as they come from the back of his eye to where they meet in the optic chiasm, it really isn't possibly to differentiate tumor and nerve in the chiasm to any great degree.
As I understand it now, after speaking to both the neuro-ophthalmologist and the neuro-oncologist, the tumor has further affect the optic nerves, most likely in the chiasm, which is causing the loss of peripheral vision. The chiasm is thought to be the source because both eyes showed the same dramatic loss and that is where the left and right eye's nerves cross on their way to the brain. What remain unknown are a few things though.
First, we don't for certain that Max has an issue. As it stands now the plan is to continue his current treatment for two more weeks and then visit CHOP again on Monday, July 30th to have his vision evaluated again. There is the possibility that today Max was just behaving oddly but I don't believe that scenario has good odds for two reasons: 1) He has always been very cooperative for his eye Dr. even when he has been uncooperative for the Dr. that does the initial evaluation and 2) His Dr. stopped me on the way out and said, "Dad, do you understand?" I replied with a simple "Yes" because both Max and Gwendolyn were with me but he followed up with "I'm very concerned." While I don't know him well I've seen him enough times with Max to get that this is no small change. Ugh.
Second, we don't know when this became a problem for Max. [This part wasn't discussed with the oncologist but will be July 30 - Tracy and I came up with this reasoning on our own while talking this evening.] Our theory is that the nerves could've been progressively getting worse but not shown detectable signs until after his exam in May. Extend the thinking a little bit and it seems reasonable to think that the chemo may have actually stopped a problem and that time might show stabilization or even improvement.
The reason that we are hoping the current treatment is effective is because the next choices all have side effects that we'd rather avoid, the worst being a less than 10% chance of developing secondary leukemia. That one frightens us quite a lot so will be trying to learn more in the next two weeks so that we can be well educated when discussing the next course of action on July 30.
In the meantime, a prayer for Max along the lines of "… hope Max was just having a bad day and the eye exam July 30 shows his peripheral vision is just fine …" might go a long way. Unfortunately, if that is what happens, Max will get the beating of his life for scaring us like that ;)
Quickly, before closing, the other 'level's that could've been better:
1) not getting up at 5:00 am after not being able to get to sleep until 1
2) not finding CHOP to be in the middle of a computer upgrade that isn't going as well as it should (I feel bad for them though as I have lived their pain)
3) Max eating his breakfast in the car, as I had thought he was, instead of not eating or drinking anything at all and then learning about that problem part way into a 3 hour session that could not be interrupted for food. (the instructions on eating the car had been very clear)
On the bright side, Gwendolyn did join Max and I today to see what Philadelphia is all about. It must seem to her that it is primarily about waiting. She did pick up that there is a problem and we've talked about it with her. She remains concerned but agreed there wasn't much to do until July 30.
The apparent problem with the MRI is that it is not as detailed as one might think. Don't get me wrong, it is a truly amazing work of science and medicine. The alternatives of CT Scans or exploratory surgery for Max, especially given that he has had more than a dozen MRIs now, aren't even imaginable. Even so, the MRI gives a somewhat broad picture of what is going on in Max's head because there even millimeters matter and some of those millimeters are incredibly significant. While it is possible to see the swelling of Max's optic nerves as they come from the back of his eye to where they meet in the optic chiasm, it really isn't possibly to differentiate tumor and nerve in the chiasm to any great degree.
As I understand it now, after speaking to both the neuro-ophthalmologist and the neuro-oncologist, the tumor has further affect the optic nerves, most likely in the chiasm, which is causing the loss of peripheral vision. The chiasm is thought to be the source because both eyes showed the same dramatic loss and that is where the left and right eye's nerves cross on their way to the brain. What remain unknown are a few things though.
First, we don't for certain that Max has an issue. As it stands now the plan is to continue his current treatment for two more weeks and then visit CHOP again on Monday, July 30th to have his vision evaluated again. There is the possibility that today Max was just behaving oddly but I don't believe that scenario has good odds for two reasons: 1) He has always been very cooperative for his eye Dr. even when he has been uncooperative for the Dr. that does the initial evaluation and 2) His Dr. stopped me on the way out and said, "Dad, do you understand?" I replied with a simple "Yes" because both Max and Gwendolyn were with me but he followed up with "I'm very concerned." While I don't know him well I've seen him enough times with Max to get that this is no small change. Ugh.
Second, we don't know when this became a problem for Max. [This part wasn't discussed with the oncologist but will be July 30 - Tracy and I came up with this reasoning on our own while talking this evening.] Our theory is that the nerves could've been progressively getting worse but not shown detectable signs until after his exam in May. Extend the thinking a little bit and it seems reasonable to think that the chemo may have actually stopped a problem and that time might show stabilization or even improvement.
The reason that we are hoping the current treatment is effective is because the next choices all have side effects that we'd rather avoid, the worst being a less than 10% chance of developing secondary leukemia. That one frightens us quite a lot so will be trying to learn more in the next two weeks so that we can be well educated when discussing the next course of action on July 30.
In the meantime, a prayer for Max along the lines of "… hope Max was just having a bad day and the eye exam July 30 shows his peripheral vision is just fine …" might go a long way. Unfortunately, if that is what happens, Max will get the beating of his life for scaring us like that ;)
Quickly, before closing, the other 'level's that could've been better:
1) not getting up at 5:00 am after not being able to get to sleep until 1
2) not finding CHOP to be in the middle of a computer upgrade that isn't going as well as it should (I feel bad for them though as I have lived their pain)
3) Max eating his breakfast in the car, as I had thought he was, instead of not eating or drinking anything at all and then learning about that problem part way into a 3 hour session that could not be interrupted for food. (the instructions on eating the car had been very clear)
On the bright side, Gwendolyn did join Max and I today to see what Philadelphia is all about. It must seem to her that it is primarily about waiting. She did pick up that there is a problem and we've talked about it with her. She remains concerned but agreed there wasn't much to do until July 30.
Saturday, May 12, 2007
Endocrinology follow up
Today Max and Bob went to Philadelphia to follow up with endocrinology. All in all it was a good day. We left the house shortly after 9:00 AM stopping at the library first. Max found a book and Bob picked up an audio book. We arrived at Philadelphia about an hour early so we had time for lunch. Max had grilled cheese and French fries and tried very hard to finish within the hour. He was close.
The exam went well and Max is fairly stable. His bone age is 11.6 years he grew about 1 cm this past six months and his growth factors are within the Normal Range for his bone age. His Dr. believes that he will need to raise the Sandostatin dose at some point in the future. We talked briefly about when Max would come off of the Lupron and start puberty but decided that is still a little ways off. We also discussed when Max would return to endocrinology and the plan is to return in July on the same day as his visit to oncology. Hopefully that will all work out.
The exam went well and Max is fairly stable. His bone age is 11.6 years he grew about 1 cm this past six months and his growth factors are within the Normal Range for his bone age. His Dr. believes that he will need to raise the Sandostatin dose at some point in the future. We talked briefly about when Max would come off of the Lupron and start puberty but decided that is still a little ways off. We also discussed when Max would return to endocrinology and the plan is to return in July on the same day as his visit to oncology. Hopefully that will all work out.
Monday, November 6, 2006
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.
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.
Thursday, August 24, 2006
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
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
Tuesday, August 22, 2006
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.
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.
Thursday, May 4, 2006
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.
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.
Tuesday, May 2, 2006
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.
...
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.
...
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.
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.
...
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.
...
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.
Wednesday, March 29, 2006
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.
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.
Thursday, February 2, 2006
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.
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.
Tuesday, January 31, 2006
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).
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).
Tuesday, August 24, 2004
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.
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.
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