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 MRI. Show all posts
Showing posts with label MRI. 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.
Monday, July 9, 2007
A Fish Ate My Homework
Max had his follow up MRI today along with a visit to Endocrinology; all to see how things are progressing. As Max had done the MRI three months ago without sedation, we scheduled this one without sedation but had him fast since 4:30 am just in case he couldn't make it through the scan without staying still. Having stayed in the scanning room with him last time, I knew to bring a book and not bring my typical laptop, PDA, and other electronic gadgetry as I had to leave it all outside the room anyway. Thinking thin I had taken only the paperwork that I needed, a pad of paper, and my new paperback that I had purchased last night and placed it on the fish tank. That kind of preparation paid off handsomely as the entire bundle still sits atop my fish tank keeping the fish entertained while I'm here trying to explain to everyone that I really do have all the paperwork (referrals, prescriptions, test results, etc.) but I just forgot to bring it. I'd have thought I was beyond the old "… the fish ate my homework …" but alas, it just isn't so.
In spite of my incompetence, things so far had gone very well. We didn't hit any traffic at all so we arrived at the hospital early around 11:00 am. We weren't supposed to arrive until noon and then start the scan at 1:00 pm but with the early arrive and some sweet timing with everything else we were done with the MRI at 1:22 pm. Our next appointment wasn't scheduled until 3:00 pm so we had time to hit McDonald's as a reward for Max because, in his words, "I faced my fears so maybe I deserve McDonald's". His fear, of course, is NOT needles, being trapped in the MRI tunnel, or suffering a terrible fate from the truly caustic chemicals that are pumped into him weekly. No, the fear that faced was that of wearing a band aid. Oh - he's also terrified of rain - really.
When we got to the registration desk at the endocrine office I knew I was in trouble. I must have tucked away in the back of my mind just how afraid I am of these women and their ruthless pursuit of all paperwork. All is in my best interest, so that I don't end up stuck with bills that otherwise would be covered by insurance, but somehow I never seem to get it all right when we visit the endocrine office. Today, as you've already learned, was not going well paperwork wise so when she finished with most of the check-in questions and asked, "Do you have a referral?" I replied, "Yes" and held my breath while looking at my feet. When I realized the silence was a little too long and looked up I found that she was staring up at me between her glasses and slightly furled eye brow. When she saw my eyes were looking at her she said, " … and I will have this … ?" I pleaded, "Yes, I know, I'm an idiot. I called my wife as soon as I realized I had left it at home. She called the doctors to get test results faxed down but now that I'm here I realize that I didn't ask her to get the referral faxed down. I really do have it at home and I'm sure it has been filed but the pediatrician's office might already be closed - is it okay if I fax it tomorrow?" She was very kind and pointed to the fax number on the wall in a way that told me I wasn't the only lummox that did this on a somewhat regular basis.
We weren't there very long before they called Max back to see the nurse practioner for his doctor. Unfortunately, it took only a few minutes to realize that we were seeing her based on another doctor's schedule and she was afraid that our doctor might have left. She hurried off to try and get him to wait if he hadn't already left. Things sort of worked out in that she found but he did have to leave so we tried to hurry through the visit. Unfortunately Max was in a very talkative and silly mood so it did take longer than normal. Essentially we have learned that Max grew about 1.3 cm, maintained weight, still showed normal hormone levels for his age and actually had lower than normal growth factors since our visit 2 months ago. He said that the lower than normal growth levels just need to be watched. Alone they don't mean too much but if the trend continues in 3 months they'll need to re-evaluate the growth suppression drug as the tumor may have changed and is no longer impacting his growth hormones the same way. I was surprised that he was happy with Max's growth because it is a little rapid but he said that it might actually be a way for his chronological age to catch his bone age. The more I think about that now, several hours later, I'm a little confused but will simply trust that the news was essentially good and will not worry myself about my trying to figure it out right now. His shots will continue, we'll get more labs in 3 months and see them again in January 2008.
Max has chemo tomorrow at Lehigh Valley. Yes, this could've been done at CHOP today but he looks forward to seeing everyone at Lehigh Valley and we felt that it was worth an additional stick this week. On Thursday Max and I head back to CHOP to meet with his neuro-ophthalmologist at 8:30 am and his oncologist at 10:00 am. That is when we'll find out the results of the MRI as well as map out the road ahead.
In spite of my incompetence, things so far had gone very well. We didn't hit any traffic at all so we arrived at the hospital early around 11:00 am. We weren't supposed to arrive until noon and then start the scan at 1:00 pm but with the early arrive and some sweet timing with everything else we were done with the MRI at 1:22 pm. Our next appointment wasn't scheduled until 3:00 pm so we had time to hit McDonald's as a reward for Max because, in his words, "I faced my fears so maybe I deserve McDonald's". His fear, of course, is NOT needles, being trapped in the MRI tunnel, or suffering a terrible fate from the truly caustic chemicals that are pumped into him weekly. No, the fear that faced was that of wearing a band aid. Oh - he's also terrified of rain - really.
When we got to the registration desk at the endocrine office I knew I was in trouble. I must have tucked away in the back of my mind just how afraid I am of these women and their ruthless pursuit of all paperwork. All is in my best interest, so that I don't end up stuck with bills that otherwise would be covered by insurance, but somehow I never seem to get it all right when we visit the endocrine office. Today, as you've already learned, was not going well paperwork wise so when she finished with most of the check-in questions and asked, "Do you have a referral?" I replied, "Yes" and held my breath while looking at my feet. When I realized the silence was a little too long and looked up I found that she was staring up at me between her glasses and slightly furled eye brow. When she saw my eyes were looking at her she said, " … and I will have this … ?" I pleaded, "Yes, I know, I'm an idiot. I called my wife as soon as I realized I had left it at home. She called the doctors to get test results faxed down but now that I'm here I realize that I didn't ask her to get the referral faxed down. I really do have it at home and I'm sure it has been filed but the pediatrician's office might already be closed - is it okay if I fax it tomorrow?" She was very kind and pointed to the fax number on the wall in a way that told me I wasn't the only lummox that did this on a somewhat regular basis.
We weren't there very long before they called Max back to see the nurse practioner for his doctor. Unfortunately, it took only a few minutes to realize that we were seeing her based on another doctor's schedule and she was afraid that our doctor might have left. She hurried off to try and get him to wait if he hadn't already left. Things sort of worked out in that she found but he did have to leave so we tried to hurry through the visit. Unfortunately Max was in a very talkative and silly mood so it did take longer than normal. Essentially we have learned that Max grew about 1.3 cm, maintained weight, still showed normal hormone levels for his age and actually had lower than normal growth factors since our visit 2 months ago. He said that the lower than normal growth levels just need to be watched. Alone they don't mean too much but if the trend continues in 3 months they'll need to re-evaluate the growth suppression drug as the tumor may have changed and is no longer impacting his growth hormones the same way. I was surprised that he was happy with Max's growth because it is a little rapid but he said that it might actually be a way for his chronological age to catch his bone age. The more I think about that now, several hours later, I'm a little confused but will simply trust that the news was essentially good and will not worry myself about my trying to figure it out right now. His shots will continue, we'll get more labs in 3 months and see them again in January 2008.
Max has chemo tomorrow at Lehigh Valley. Yes, this could've been done at CHOP today but he looks forward to seeing everyone at Lehigh Valley and we felt that it was worth an additional stick this week. On Thursday Max and I head back to CHOP to meet with his neuro-ophthalmologist at 8:30 am and his oncologist at 10:00 am. That is when we'll find out the results of the MRI as well as map out the road ahead.
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.
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).
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