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.
Showing posts with label oncology. Show all posts
Showing posts with label oncology. Show all posts
Thursday, July 12, 2007
Tuesday, May 22, 2007
Showdown at Lehigh Valley
Today looked to be a record breaker as far as time was concerned. Tracy and Max made the trip alone for the first time so Tracy got to blast music while Max watched a DVD. By the time Tracy had finished her lunch they were only 15 minutes away so it seems that there was little to no stress now that she's comfortable with the route. Max was seen almost right away so his blood workup was started pretty much as soon as was possible. During the talk with his doctor they decided to try some new medicine to help Max stay asleep at night as his rising so early in the morning is leaving everyone a little frazzled. This morning even Gwendolyn was up at 6:30 am and she NEVER gets up early. Anyway, they decided that since Max shows no signs of having any issues with chemo and because his initial labs showed normal red and white cell counts that there was no need to wait for the more involved breakdown of his neutrophils but would get the chemo in and finish up for the day. Unfortunately, before his chemo was done and they could leave, a water 'gun' fight erupted.
For those that don't know Max is all about getting other people wet but HATES to get even the tiniest drop of liquid on himself. It is so bad that he will rant and rave about how you have ruined his shoes by simply getting a drop of water of the rubber part. I swear this is true. Anyway, Max immediately got involved with a syringe of his own that was filled with saline instead of water (can you sense where this is going?). Lots and lots of wetness filled hilarity ensued … until … Max took one in the eye from one of the ladies with the super soaker of syringes. Fortunately hers was filled with water and not saline but Max immediately crumbled like a fallen soldier. It took another 20 minutes to get him calmed down enough to return to the car. He almost got to bring home the giant syringe but Tracy put the kibosh on that and instead it will be kept there, with his name on it, for eternity (or until someone takes the tape off and takes it for their own).
For those that don't know Max is all about getting other people wet but HATES to get even the tiniest drop of liquid on himself. It is so bad that he will rant and rave about how you have ruined his shoes by simply getting a drop of water of the rubber part. I swear this is true. Anyway, Max immediately got involved with a syringe of his own that was filled with saline instead of water (can you sense where this is going?). Lots and lots of wetness filled hilarity ensued … until … Max took one in the eye from one of the ladies with the super soaker of syringes. Fortunately hers was filled with water and not saline but Max immediately crumbled like a fallen soldier. It took another 20 minutes to get him calmed down enough to return to the car. He almost got to bring home the giant syringe but Tracy put the kibosh on that and instead it will be kept there, with his name on it, for eternity (or until someone takes the tape off and takes it for their own).
Tuesday, May 8, 2007
Last Trip to Lehigh before Tracy starts to fly solo
On Tuesday, May 8, 2007, Tracy drove, for the very time ever, to Lehigh Valley! She drove there and back and while it was a little nerve racking with Bob saying things like “Are you sure you want to go that way?” and Max saying, “Daddy, stop yelling at Mommy. This is her first time and she’s doing a good job.” We got there right on time and without a ding, dent, or ticket.
This was our first chemo only visit to Lehigh Valley in a long long time so we weren’t sure how long it would take but we had very high hopes. Unfortunately it took longer than Tracy thought it would but it is so hard to just get in and get out because Max really does have a good time while he is there. This week everyone knew that it was, potentially, Tracy’s last non-solo trip so they tried to make her feel at home (Max has already indicated that he is looking forward to going with Mommy and loves everyone there so his comfort was not in question). The ladies at Lehigh Valley did a nice job singing Bob’s praises, talking up how much they will miss his smiling face, etc. (need to remember to send that checkJ ) but they also did a great job going over everything again with Tracy.
We were a little better this week about getting in, getting Max triaged (height, weight, blood pressure, and body temp), and getting his blood drawn for testing. There were more people there this week though and summer vacations have started so it didn’t happen right away but it gave us a chance to talk to Nancy, the social worker, again which is when we learned the vacation schedules there for the summer. When Max’s IV was getting setup he was very curious about the needle (we still don’t know how he can just stare at the process of putting the needle into his hand but he does and he remains perfectly still). Anyway, his nurse took out a new kit and used it to show him how the needle pops out, the straw that stays in his hand, and how the needle pops back into the plastic housing so that no one gets stuck accidently once it has been used. Then they showed Max how the syringe with saline works but they filled it with water and let him hold it. Then Nancy convinced him it would be a good idea to push the plunger (and squirt the water). No one got soaked but many got wet.
After all of that we headed home for dinner with the rest of the family.
This was our first chemo only visit to Lehigh Valley in a long long time so we weren’t sure how long it would take but we had very high hopes. Unfortunately it took longer than Tracy thought it would but it is so hard to just get in and get out because Max really does have a good time while he is there. This week everyone knew that it was, potentially, Tracy’s last non-solo trip so they tried to make her feel at home (Max has already indicated that he is looking forward to going with Mommy and loves everyone there so his comfort was not in question). The ladies at Lehigh Valley did a nice job singing Bob’s praises, talking up how much they will miss his smiling face, etc. (need to remember to send that checkJ ) but they also did a great job going over everything again with Tracy.
We were a little better this week about getting in, getting Max triaged (height, weight, blood pressure, and body temp), and getting his blood drawn for testing. There were more people there this week though and summer vacations have started so it didn’t happen right away but it gave us a chance to talk to Nancy, the social worker, again which is when we learned the vacation schedules there for the summer. When Max’s IV was getting setup he was very curious about the needle (we still don’t know how he can just stare at the process of putting the needle into his hand but he does and he remains perfectly still). Anyway, his nurse took out a new kit and used it to show him how the needle pops out, the straw that stays in his hand, and how the needle pops back into the plastic housing so that no one gets stuck accidently once it has been used. Then they showed Max how the syringe with saline works but they filled it with water and let him hold it. Then Nancy convinced him it would be a good idea to push the plunger (and squirt the water). No one got soaked but many got wet.
After all of that we headed home for dinner with the rest of the family.
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
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.
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, 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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