Stomach Pain & a Fever but doing OK

Today, unexpectedly, we had to take Max to the hospital at Lehigh Valley because of some abdominal pain. It started Sunday night with him complaining on and off that his tummy hurt and then complaining enough at dinner so that he didn't eat. Then, though, he said he did feel well enough to eat some cherry cobbler for dessert so we didn't believe the pain too much. This morning, however, he didn't eat breakfast and he ALWAYS eats breakfast so we figured something more might be wrong. I took Gwendolyn to school and then headed out to Lehigh Valley with Max while Tracy called them from home to see where we had to go. It turned out that they could take him at the normal clinic office so we went there and saw most of the normal crew. Max complained of a lot of pain on the way in and by the time we got there he was running a fever of 102.1. They got him an IV and into a dark and quiet room while they waited for blood work to come back.

His counts are mostly normal with his ANC count having jumped back up to 2,000 but that is probably because of his fever. The rest of the blood work that they ran came back normal but he also had an ultra sound of his abdomen to see if anything visible was wrong. We're waiting for the reading on that now and assuming it is also normal he'll get the shots he was supposed to get tomorrow but they're going to wait until Wednesday for chemo because they want him 48 hours without a fever before giving another dose.

…

We got the radiologist reading and everything in his abdomen was fine. He got his shots and then we headed home. When we left he still had a fever of about 102 but they had ruled out pretty much everything except for abdominal pain being caused by the chemo or by stress. It may be the Max suffers more internal stress than we thought and it is finally catching up with him or it could be that the chemo took a while to affect his stomach and that caught up with. Either cause should be cured by the Zantac. The fever could be related or could be viral but it is not the result of an infection.

Right before dinner we gave Max his Bactrim, some Tylenol and the first dose of Zantac. He promptly threw them all up in a yellowish mess laced with pink. He didn't seem too trouble by that but obviously hadn't gotten any medicine so we waited half an hour then gave him the Zantac. That stayed down and half an hour later he got some Tylenol. His fever appears to have broken and he said that his pain was gone before he went to bed. We didn't bother with the Bactrim because the antibiotic that he got at the hospital will cover him for 24 hours against nearly everything anyway. Tomorrow morning he'll get Zantac and Bactrim and, if he feels well enough, will go to school. Wednesday Tracy will take him back to Lehigh Valley for chemo; it kind of works because that is only a half day of school.

Lehigh Valley

Sorry for not getting an update out last week but all is well. Last week's appointment was uneventful for Max and Tracy. This weeks appointment also went well but there was a somewhat large crowd this week so the appointment took longer than normal (and not because of talking about Bon Jovi's newest album). Max's neutrophil count is a little low at 858 with a normal range between 1,500 and 8,000. If the count next week is below 750 then chemo will be skipped for that week. We won't know until after the blood test but Max needs his monthly shots anyway so the trip won't be a 'waste'. I get to take him next week because Tracy will be attending Gwendolyn's end of the year party at school.

I've managed to nail down his schedule for follow up appointments in Philadelphia the week of July 9 so that he and will be there Monday, July 9 for an MRI and an endocrinology appointment. We'll return Thursday, July 12 to get the results of the MRI, have his eyes checked and figure out what is next at a meeting with his oncologist at the end of it all. If things are going well we'll probably get him setup for surgery to have a port put in place after he gets back from Block Island.

As a quick note, I got a chance to talk to Max the other night about what he thinks of his visits to Lehigh Valley. He told me that while sometimes he gets a little nervous about the needles that it is always okay in the end and really likes going there. I asked him if the shots hurt and he told me that he doesn't even feel them anymore (we do use a lot of numbing cream to help with that). He said that sometimes the needles in his hand hurt but not for very long. Tonight he told me that there is no pain in his hands. He did get a Ariel tattoo on his hand so it was impossible to tell if there was any bruising.

Sleepless in Flanders (in the morning anyway)

Today went well. Max continues to have trouble staying asleep after about 4:00 am and is, obviously, quite tired during the day. It is now something he recognizes as a problem but seem incapable of dealing with. Review of the trial medicine with the doctors simply confirmed that most medicine is geared towards A) getting you to sleep or B) keeping you asleep if you sleep restlessly. Max doesn't suffer from any of that as he goes to bed quite well between 8 and 9 pm each day and sleeps soundly until 4 or 5 am most days. There have been single days where he has slept until 6 or even 7 but those are few and far between. Unfortunately what it all boils down to is that we've stopped the medicine and Max will likely continue to rise very early. Hopefully he'll continue to stay out of trouble but now that I've written it down I expect a flood in the house shortly (hopefully not worse).

In addition to Max's sleep issues he started to complain yesterday about a pain in arm/wrist when he was in occupational therapy at school. Tracy talked to the doctor today about it and they've decided to wait a week to see if it continues and is likely caused by the chemo or this is just some passing thing. If it is stemming from the chemo there are a couple different medicines that could be used to stop the pain but they would, oddly enough, make him sleepy so he'd still get up at the same time but be drowsy during the day. Hopefully this pain does not continue but we'll see.

Max's labs from last week aren't all back so it will be another week before we know if his hormones from puberty are still be adequately suppressed. Since there aren't any physical signs we expect good news on those labs.

In other news, Gwendolyn's softball team has made the playoffs and originally had a game scheduled for tonight but that has been postponed until Thursday because of the threat of a storm. Hopefully playing after school will suit them well as at their final game on Saturday they got creamed because the game the started at 9:00 am and the girls weren't really awake until after it was all over.

In case you noticed that Max's blog is still lacking pictures I'm patiently waiting at my spot in the queue of things on Tracy's list. I've heard a rumor that I'm next but that source wasn't very reliable (Olivia says "yes" to a lot questions and consistently answers "10" to any math question).

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.

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).

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

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.