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).
Tuesday, May 22, 2007
Tuesday, May 15, 2007
Tracy flies solo (sort of)
Things seemed okay when Tracy and I talked about her trip to Lehigh Valley with Max and Oma (her Grandmother) last night. That sounds ominous but so far there is no plot twist coming, that I know of, that will alter the course of the story and turn things into a complete disaster. I called home at 11:30 am just to remind Tracy of the current time as she has a penchant for losing track of time when she is doing … well … anything. She answered the phone from outside the house where she and Olivia were covered in dirt because they'd been planting flowers. Tracy told me that she was trying to rush but still had to put away the flower stuff, clean herself and Olivia, run to the store, feed Olivia, and … well you can imagine that wasn't going to fit into the next hour so she cut her list a little short.
I got the next call from Tracy at 12:45 pm, 15 minutes after she was to have picked up Max. Things seemed on track as everyone was in the car and they were already on their way. The only glitch was that the navigation software on her laptop wasn't working exactly right. I was able to talk she and Oma through turning on the GPS because it doesn't turn on just by plugging it in (seems to be a bit shortsighted) and within 2 minutes the computer was telling her where and when to turn. Things were still going well.
The next call came at 2:15 pm, 15 minutes after their appointment was to start. It seemed that things were already under way as Max had already been triaged. Tracy learned that he has gained 0.4 Kg this past week but he also drank a very large quantity of juice on the way out so it could all be water weight? Max had not yet gotten his IV but they are checked in and the process is started. Because of vacation there seems to be a new nurse at Lehigh Valley but it could be someone that Bob and Max have met over the past 3 years but whom Max says he does not remember. His recollection of names used to be great but he is quickly turning into Bob who forgets names while being introduced.
The last call came at 4:17 pm and they were already on Route 78 on their way home. A new nurse had started today and she had trouble getting an IV started on Max's right hand so Max was given a special bead for his necklace (String of Strength) and also a special prize for being such a trooper about getting stuck twice in one hand and then switching to the other hand. Once they were in the car, Tracy panicked a little because the mapping software wasn't telling her where to go but it turned out that the problem, again, was the GPS only this time it was on the floor instead of the dash so it didn't know where it, or Tracy, was at the time.
There could be more when Tracy and I have more time to talk but I suspect that this will be it until next week.
-Bob
I got the next call from Tracy at 12:45 pm, 15 minutes after she was to have picked up Max. Things seemed on track as everyone was in the car and they were already on their way. The only glitch was that the navigation software on her laptop wasn't working exactly right. I was able to talk she and Oma through turning on the GPS because it doesn't turn on just by plugging it in (seems to be a bit shortsighted) and within 2 minutes the computer was telling her where and when to turn. Things were still going well.
The next call came at 2:15 pm, 15 minutes after their appointment was to start. It seemed that things were already under way as Max had already been triaged. Tracy learned that he has gained 0.4 Kg this past week but he also drank a very large quantity of juice on the way out so it could all be water weight? Max had not yet gotten his IV but they are checked in and the process is started. Because of vacation there seems to be a new nurse at Lehigh Valley but it could be someone that Bob and Max have met over the past 3 years but whom Max says he does not remember. His recollection of names used to be great but he is quickly turning into Bob who forgets names while being introduced.
The last call came at 4:17 pm and they were already on Route 78 on their way home. A new nurse had started today and she had trouble getting an IV started on Max's right hand so Max was given a special bead for his necklace (String of Strength) and also a special prize for being such a trooper about getting stuck twice in one hand and then switching to the other hand. Once they were in the car, Tracy panicked a little because the mapping software wasn't telling her where to go but it turned out that the problem, again, was the GPS only this time it was on the floor instead of the dash so it didn't know where it, or Tracy, was at the time.
There could be more when Tracy and I have more time to talk but I suspect that this will be it until next week.
-Bob
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.
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.
Tuesday, May 1, 2007
Starting up at Lehigh Valley
Today Max, Tracy and Bob made our first trip for this new round of chemo at Lehigh Valley. Max was very excited to have Mom along and was very anxious to introduce her to everyone. Unfortunately he'd forgotten that Mom had met everyone at prior Christmas Parties and Talent Shows so it was a shade anti-climactic. Max was extremely goofy while trying to show Tracy all the great stuff that is available to play with there. He made some canned tomato sandwiches (two pieces of bread, a toy can of tomatoes, and cheese - can't forget the cheese) along with a slew of other slightly less appetizing selections.
We went over the possible side effects of vinblastine which aren't as bad as his prior treatment of carboplatin and vincristine (we'd done this at CHOP last week but we needed to sign a new consent form and it was a good review anyway). We also went over some recent concerns about Max's lack of sleep and behavior problems at school. He goes to bed just fine but rises very early and then ends up tired at school. He's having a hard time making it through the day without having some sort of temper flare up. Thankfully the flare ups have been minor. Our concerns are that it could be due to the tumor as it is located where his emotional control (and many many other things) resides but also could be due to the vinblastine as it is a known side effect. With only one dose under his belt though it seems unlikely that the new drug is the cause. Oh yes, the other likely cause is that he is simply a seven year old boy going through a phase that will pass as so many others already have. For now, we're waiting to see.
After our chat and their evaluation of Max, it was time to get his IV. That went very well but brought up another concern of ours which is that his veins might not support all the 'pokes' for a year. We're going to work on hand strength with him to try and make the veins in his hand and lower forearm more easily accessible but if we get through his next MRI, around July, and it looks like we'll be doing this for the long term we're probably going to get him setup with another central line (aka "port") in his chest. The obvious down side is surgery and the less obvious is that because of the risk of infection a fever means an overnight stay at the hospital. The upside is that it is lot easier to get an IV going through a port. Again, time will tell but if we do it he'll probably have it done at the end of August after vacation but before school starts.
Once the IV was in they drew some blood and did his shots. Max whispered to his nurse but Bob clearly heard the word "box" and thought it was Max asking for a treasure. His intent was actually only to show Tracy his "box" there which is a large shoe box decorated with a jungle theme and his name on the outside. Of course the box was brought into the room filled with a new treasure, a pin art impression toy, that everyone had fun playing with for the rest of the visit. Max got his shots of Sandostatin and Lupron and then we horsed around until his blood work results came back.
His counts were fine so he got his chemo, they took out his IV, and we headed home. All in all a good trip out there. Along the way today we learned of a baseball league that he can play in but it is about an hour and 20 minutes from home.
We went over the possible side effects of vinblastine which aren't as bad as his prior treatment of carboplatin and vincristine (we'd done this at CHOP last week but we needed to sign a new consent form and it was a good review anyway). We also went over some recent concerns about Max's lack of sleep and behavior problems at school. He goes to bed just fine but rises very early and then ends up tired at school. He's having a hard time making it through the day without having some sort of temper flare up. Thankfully the flare ups have been minor. Our concerns are that it could be due to the tumor as it is located where his emotional control (and many many other things) resides but also could be due to the vinblastine as it is a known side effect. With only one dose under his belt though it seems unlikely that the new drug is the cause. Oh yes, the other likely cause is that he is simply a seven year old boy going through a phase that will pass as so many others already have. For now, we're waiting to see.
After our chat and their evaluation of Max, it was time to get his IV. That went very well but brought up another concern of ours which is that his veins might not support all the 'pokes' for a year. We're going to work on hand strength with him to try and make the veins in his hand and lower forearm more easily accessible but if we get through his next MRI, around July, and it looks like we'll be doing this for the long term we're probably going to get him setup with another central line (aka "port") in his chest. The obvious down side is surgery and the less obvious is that because of the risk of infection a fever means an overnight stay at the hospital. The upside is that it is lot easier to get an IV going through a port. Again, time will tell but if we do it he'll probably have it done at the end of August after vacation but before school starts.
Once the IV was in they drew some blood and did his shots. Max whispered to his nurse but Bob clearly heard the word "box" and thought it was Max asking for a treasure. His intent was actually only to show Tracy his "box" there which is a large shoe box decorated with a jungle theme and his name on the outside. Of course the box was brought into the room filled with a new treasure, a pin art impression toy, that everyone had fun playing with for the rest of the visit. Max got his shots of Sandostatin and Lupron and then we horsed around until his blood work results came back.
His counts were fine so he got his chemo, they took out his IV, and we headed home. All in all a good trip out there. Along the way today we learned of a baseball league that he can play in but it is about an hour and 20 minutes from home.
Monday, April 23, 2007
The Good, The Bad, and The Good
Today we have some bad news but that is tempered with some good news. We'll start with good, then onto the bad but then back to the good. First, if you haven't already heard, Max was able to do his follow up MRI on April 11 without sedation. (His MRI was moved up a month because he had complained of some eye pain that had no visible source.) Doing the MRI without sedation is a huge achievement for him and makes future scans far less worrisome. This means he doesn't have to fast for 8 hours before scans and he doesn't need 2 days to recover from the drugs. It is remarkable that he can do this because he needs to stay absolutely still for an hour and half in a tunnel that is many times louder than the Holland Tunnel with all the car windows open. Next time we'll look into bringing music for Max, as that appears to be an option, as well as better reading material for Bob as he was left reading very old editions of Vogue since laptops aren't allowed in the scanning room.
Onto the bad news; the scans showed that the tumor on the left side of his hypothalamus is more active and larger in size. Today we met with his oncologist at Children's Hospital of Philadelphia (CHOP) and talked about what this means for Max. The long and the short of it is that there is very little change in Max physically but we still need to see the eye doctor to confirm this. His vision check with the oncologist went worse than Bob had expected because Max didn't really see anything out of his 'bad' eye. Part of the problem though is that waiting for a physical change means waiting for a loss of vision or a significant change in behavior, hormone, or body function. We all agreed that we did not want to wait for that so we started talking about possible treatments. (We did meet with his neuron-ophthalmologist later and found his vision to be slightly improved - go figure)
This brings us back to the "good" news as there is a change in options from when we talked about these things in November of 2004. The options from before still exist but one that is new (or wasn't appropriate for discussion last time, not really sure) is a chemotherapy drug called vinblastine (also called velban). This will be a once a week therapy that is essentially an injection. This is different than before, when he was getting a drip, because it is an intravenous injection so there is no long wait while the drugs go in. After his blood work is done - normally 20 minutes if memory serves - there is just an injection and then we go home. Our hope is to be able to accomplish the majority at Lehigh Valley so that Max can go to school for most of the day on Tuesdays and it won't be the disruption to his life the previous chemotherapy was. We choose this option over the others as there is no chance of leukemia as a side effect. Other bonuses are that while it will likely affect his reflexes it is unlikely to be as bad as last time, his hair is likely only to thin a little bit, and finally the most likely side effect will be constipation which he dealt with before just fine. The rate of effectiveness is only 50% which is on par with the other favored treatment option which was Temodar. Temodar would've been even less of a disruption as it is an oral med that he takes at home but there is a risk of leukemia which we weren't ready to chance yet.
At the end of 3 months we should know whether or not this course of treatment is effective or not.
It is getting late and I really do want to get an update out to everyone before it filters through the phone chain and gets distorted. I think I've covered everything but Tracy is already asleep so you're getting this un-reviewed and un-edited. The important thing to take away is that Max is not in any pain and that the treatments that we started today are likely to have less of a negative impact on his life than his prior 14 months of chemo. Oh - he'll be missing the end of Art class at school which he assures us is fine by him.
Onto the bad news; the scans showed that the tumor on the left side of his hypothalamus is more active and larger in size. Today we met with his oncologist at Children's Hospital of Philadelphia (CHOP) and talked about what this means for Max. The long and the short of it is that there is very little change in Max physically but we still need to see the eye doctor to confirm this. His vision check with the oncologist went worse than Bob had expected because Max didn't really see anything out of his 'bad' eye. Part of the problem though is that waiting for a physical change means waiting for a loss of vision or a significant change in behavior, hormone, or body function. We all agreed that we did not want to wait for that so we started talking about possible treatments. (We did meet with his neuron-ophthalmologist later and found his vision to be slightly improved - go figure)
This brings us back to the "good" news as there is a change in options from when we talked about these things in November of 2004. The options from before still exist but one that is new (or wasn't appropriate for discussion last time, not really sure) is a chemotherapy drug called vinblastine (also called velban). This will be a once a week therapy that is essentially an injection. This is different than before, when he was getting a drip, because it is an intravenous injection so there is no long wait while the drugs go in. After his blood work is done - normally 20 minutes if memory serves - there is just an injection and then we go home. Our hope is to be able to accomplish the majority at Lehigh Valley so that Max can go to school for most of the day on Tuesdays and it won't be the disruption to his life the previous chemotherapy was. We choose this option over the others as there is no chance of leukemia as a side effect. Other bonuses are that while it will likely affect his reflexes it is unlikely to be as bad as last time, his hair is likely only to thin a little bit, and finally the most likely side effect will be constipation which he dealt with before just fine. The rate of effectiveness is only 50% which is on par with the other favored treatment option which was Temodar. Temodar would've been even less of a disruption as it is an oral med that he takes at home but there is a risk of leukemia which we weren't ready to chance yet.
At the end of 3 months we should know whether or not this course of treatment is effective or not.
It is getting late and I really do want to get an update out to everyone before it filters through the phone chain and gets distorted. I think I've covered everything but Tracy is already asleep so you're getting this un-reviewed and un-edited. The important thing to take away is that Max is not in any pain and that the treatments that we started today are likely to have less of a negative impact on his life than his prior 14 months of chemo. Oh - he'll be missing the end of Art class at school which he assures us is fine by him.
Tuesday, March 6, 2007
Lehigh Valley - March 2007 Monthly Visit
Wow - it has been too long since I've update this site. Sorry but things have been busy and Max is doing well. His November scan was stable and his eye exam was fine!
Max had shots and a blood draw at Lehigh Valley today. The blood draw was so that his growth factors could be checked to see if the Sandostatin is still effective enough. Max, the nurses, and the social worker there sang "Part of Your World" from the Little Mermaid while he got his shots. There were some stumbles on the exact lyrics but all in all, it was NOT melodic. It took Max's mind off the shots and that's what counts. He chatted with the nurses for about 30 minutes after the shots about things like Peter Pan movies. Oh, and he looked at pictures of a cat in a toilet bowl - not sure what that was about but he certainly thought it was funny.
Max has been doing very well with the shots which are essentially his only treatment now. He is getting new glasses soon but that is just to update his frames and lens' prescription. We follow up with an MRI in May. If he's stable I think we stay on 6 month follow ups. He also has an appointment with Endocrinology in June when we'll find out if his Sandostatin and Lupron injections are still effective.
Max had shots and a blood draw at Lehigh Valley today. The blood draw was so that his growth factors could be checked to see if the Sandostatin is still effective enough. Max, the nurses, and the social worker there sang "Part of Your World" from the Little Mermaid while he got his shots. There were some stumbles on the exact lyrics but all in all, it was NOT melodic. It took Max's mind off the shots and that's what counts. He chatted with the nurses for about 30 minutes after the shots about things like Peter Pan movies. Oh, and he looked at pictures of a cat in a toilet bowl - not sure what that was about but he certainly thought it was funny.
Max has been doing very well with the shots which are essentially his only treatment now. He is getting new glasses soon but that is just to update his frames and lens' prescription. We follow up with an MRI in May. If he's stable I think we stay on 6 month follow ups. He also has an appointment with Endocrinology in June when we'll find out if his Sandostatin and Lupron injections are still effective.
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