Tuesday, May 29, 2007

Memorial Day, Max's Cheesburger Hill, Lehigh Valley Visit for shots

Hopefully everyone had a wonderful Memorial Day Weekend. We celebrated by marching in the Mount Olive Parade; Max & Bob marched with Cub Scout Pack 47 while Gwendolyn, Tracy and Olivia marched with Brownie Troop 1199. This year Max was well prepared for a long walk because last year Bob learned, after two parades, that Max had no problem chastising his Dad in front of the town in the middle of a parade. We had chatted many times the week before about how long the parade would be and how it might rain or be really hot but that we'd been walking a lot so this wouldn't be as painful as last year. I'm not sure but I'm pretty certain that all that talk was in vain and what really sealed the deal was my epiphany the night before when I told Max, "If you can get through the whole parade without complaining I promise there will be a great surprise at the end of the day. But remember no complaining and no asking about the prize." Max looked at me, thought about it for a moment and started to say something when I interrupted him and said, "Remember, no asking about the prize means not all … including right now … got it?" Max said, "Yes, I knew that but wasn't going to ask about the prize. What I wanted to know was if it is like when I open presents – is it that kind of surprise or is it more like a Happy Meal prize?" I explained to him how that was still asking and he said, "I'm sorry I didn't know … do I still get the prize?" We left it at "Yes" but agreed not to talk about it anymore (after all I needed time to figure out the prize).

Memorial Day morning started out a little drizzly and, in case you've forgotten or not heard, Max hates getting wet, especially when it is because of rain. We loaded up the car with kids, a stroller, water, and rain coats. Thankfully by the time we got to the marshalling area the storm had passed and it was pleasantly sunny. We had to stand around for about 30 minutes while everyone got situated. Max entertained himself by naming all of the instruments in the High School marching band (what is the horn that is bigger than a French horn but smaller than a tuba and is not a trombone? Oboe? We discussed that at length but no one in our group knew for certain).

As soon as the parade started I remembered that I had wanted to remember to bring small flags for the boys to hold and candy for them to toss to the crowd. Unfortunately this was the first time I had thought about it since the July 4th parade last year. I hold only a modicum of hope that I will remember for the July 4th parade this year. Anyway, as soon as we started walking the cub scout pack in front of us started throwing candy to the crowd of 4 or 5 people at the beginning of the parade and our boys immediately ran up and snatched it out of the road in a mad scramble. We tried to reign the boys in but it happened again just a few minutes later so we had to stop our pack, and all of the people behind us, for a minute while we told the boys in no uncertain terms that they were not to stop again or there would be trouble. With the next toss of the candy by the boys ahead of us I watched to see what would happen and was pleasantly surprised that while all the boys looked not one made a move to claim the candy. Then a few of our parents ran up to grab what appeared to be a new candy. !@#$%s Ugh.

We made it to the bottom of the beginning hill and started up the far side and I was realizing that Max hadn't really said anything but was simply holding my hand, keeping pace, and looking a little tired. We were next to Roy, another scout leader who had marched with us last year (and heard Max's rants), and he must have thought the same thing I was thinking but he put it to words by telling Max that he thought he was doing a great job. I wasn't sure what Max would say but hadn't wanted to say anything myself for fear of starting a rant but Max surprised me by telling Roy that he was a little tired because of the hill and had a small cramp but was otherwise doing okay. Once again I had my heart melted by my not so little boy. Thankfully the hill wasn't all that steep and Max made it to the top without incident. I got him to drink a little water when the parade stopped for traffic but otherwise he simply walked with everyone else up until the end. Near the end he said that he was too tired to wave and complained that my hand was sweaty. I told him that I was fine with him not holding my hand by he had to keep up the pace. He said, "No, I want to hold your hand but I also want you to know it is really sweaty." Not knowing what to say we marched until we saw TR and Kathy near the very end of the parade. That brightened Max's spirits enough to get us across the highway which was the 'finish line' of the parade. His prize ended up being that he was allowed to watch a movie, Over the Hedge, when we got home along with the promise of a McDonald's Happy meal after his hospital visit the next day.

For dinner yesterday Bob cooked hot dogs and hamburgers on the grill. When we asked Max which he wanted he said McDonalds. I felt bad that he had been so good all day, especially at the parade, but also knew that he was getting it the next night because I was running out for a softball game. I tried to talk to him about that and he said he understood and would settle for "Mommy Chickens, Mommy French Fries, and ketchup." I told him that the whole point of the grill was to make less work for Mommy when cooking dinner but he wasn't happy about that. Not sure why but I then told him that when he was little he used to love McDonalds' cheeseburgers and that he would eat them all the time and wouldn't touch the chicken nuggets. He couldn't tell if I way lying or not but he just kind of smiled at me like he thought I was so I said, "Really. You even stole Mommy's sometimes." That made him laugh and he decided he would have a McDonalds's cheeseburger for dinner. I don't remember now how I got out of that but in the end he ate a home cooked cheeseburger with ketchup on it. It is odd that such a thing is a milestone for a near 8 old year old but for Max it was quite an accomplishment. For Tracy and I it means that we can go to cookouts this summer without worrying about what to feed him. Unfortunately Olivia took 2 hours to eat just 3 bites of a hot dog but that is a story that is just too painful to recount right now … perhaps with time ;)

Today was the first time that Tracy was taking Max for shots. We use numbing cream on both 'cheeks' to make the shots less painful and Tracy had only done that once before and hadn't really understood where the shots went so this morning she asked me to mark his butt so she got it done correctly later in the day. Being the incredibly funny Dad that I am I used a fat permanent green marker to draw a dashed circle on his right cheek and then a nice smiley face on the left cheek. Not sure how that went over at the hospital (it didn't come up in conversation with Tracy yet) but it had Tracy laughing this morning but quickly led to reminders for Max from both Mom and Dad that no one at school should be shown Dad's handiwork (probably should've thought of that beforehand).

As yesterday was a holiday the hospital was a little busier than normal today but not too bad. The new nurse couldn't get Max's IV started on the first try so another nurse got him hooked up. I think that we're all hoping that his July scans go well so that he can get a port put in even tough it means another 9 months of chemo. The bad part of the day was that the lab work took a really long time to come back. Max started his day this morning at 4:18 am so by 4:00 pm, when labs still had not returned, he announced that he was " .. done with this ridiculous place and it was time to go home." It didn't work out that way for him but he did get a tour of the kitchen area where he was allowed to grab some cheerios and milk to hold him over until his labs came back. That seemed to work but they didn't get out of the hospital until 5:00 pm. On the bright side, while there was traffic on Route 22, which is the first route out of the hospital, the rest of the way home was smooth sailing.

Another good thing that happened today is that one of the women from church brought over dinner for us while Tracy's Mom was here with Olivia this afternoon. I had softball immediately after work so I had picked up McDonalds for the kids before running out. Tracy and I got to eat BBQ chicken breasts, corn bread, and chocolate chip cookies for dinner. The BBQ was fabulous and the chicken was amazingly tender and we are grateful for all the effort that went into the meal. The church offered to do this every Tuesday but we felt guilty about that so we agreed on once a month – the Tuesday's when Max gets his shots because on those nights the kids all get McDonalds as a special treat for Max doing so well with the shots.

Max did have some extra hormone lab work done today and we should know those results in about two weeks. I have started the scheduling process for his July follow up MRI and medical appointments but that will take some time to complete. Because he has the MRI and has to see 3 doctors we qualify for the Complex Scheduling service where they will try to coordinate seeing all the doctors the same day. Unfortunately the scheduling software that they use is being updated June 5th so they can't schedule the doctors until after that. I do have his MRI setup for 1 pm on July 9 so hopefully the doctors will all be that Thursday but time will tell.

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).

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.


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.

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.

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.