Chemo in Rhode Island

While today required a lot of advanced planning on the part of Tracy and the American Cancer Society things went very well for Max, Tracy and her Dad. They took the early morning high speed ferry from Block Island to Point Judith where they were met by Kathy from Road To Recovery. Road To Recovery is a program run by the ACS that provides help to cancer patients getting to and from their treatments. Everyone thought that Kathy’s Lexus with the GPS and video display for backing up was really cool. It came in especially handy when they tried to find a McDonald’s for Max to get lunch! Kathy is a retired school nurse from Succasunna, NJ who now volunteers for Road To Recovery in her spare time. I believe that Tracy told me Kathy’s sons went to URI.

The visit at the hospital went well. Max was expected and they treated everyone wonderfully. They do chemo a little differently there so it took a short conversation to explain what Max was used to as far as his IV placement but the great thing was that the blood work was turned around in just 20 minutes. Tracy sent me a picture of Max at the hospital waiting for his medicine to be prepared – the item in his lap is a hospital toy of some sort. She also send me a picture of Max on the ferry ride home. With any luck they should now be on their way to the beach.

No Change in Treatment ... yet?

Today we had planned on leaving by 9:00 but that wasn't critical so after gas, caffeine, and cash it ended up that we hit the road at 9:30. We made great time until we were about 11 miles away when we stopped dead for a little while. The accident that was responsible was on the other side of the road and looked to be an SUV that had flipped. The firemen we're looking at their handiwork in cutting the roof clean off the vehicle and the tow truck guys were trying to figure out how to winch the wreck onto the flat bed. It looked like the north bound lane was going to be there a while. Even with that small delay we got here by 11:30 am and registered with oncology.

Max got his patient bracelet and triaged right away (4' 9.5" and 102 lbs) and then talked to the art therapy person about the book of the week. This being Monday Max got to pick the new book, read it, and come up with the question that all who will follow him will need to answer. As a reward he chose the 2nd book of the Harry Potter series on audio tapes. We'll be starting that on the way home, I guess. Max got his IV started and then we headed downstairs for lunch. In the car he had outlined his lunch plan for me a number of times and it was to include a six piece chicken nugget happy meal with french fries and a low fat milk … and a toy, can't forget the toy. He was pretty excited about all that and was pretty shocked to see that the entire McDonald's space was in a shambles as it was being renovated! There was note on the door that said they would be closed July 29 to Aug 1. He was like a deer in the head lights - far too shocked to process what happening and get angry he just stared in disbelief. Workers were milling in and out and we were in the way so I got him to move and we talked about what we could do instead. That went far better than I had thought with only one "Why does my WHOLE day have to get RUINED by YOU!"

On the way to the main hospital cafeteria we ran into his endocrine doctor. While I was talking to her Max took off so I had to leave before I could catch her up. I like her and felt bad for ditching her but she understood. The new plan for lunch went pretty well with Max eating everything without a fuss but breaking wind quite loudly at the end. Thankfully it was loud in there and no one could pinpoint the source. We got to his ophthalmology appointment about 20 minutes early but had to wait a little while to get in. This place is always incredibly crowded. The visit went as expected but I learned the correct name of the new issue is "dense bilateral hemianopsia". I found a very cool site at the University of Indiana (http://www.indiana.edu/~pietsch/hemianopsia.html) that explains hemianopsia and the eyes in general. If images of cadaver brains make you squeamish, you might not want to visit (just brains, not their containers). In a nutshell, Max has lost almost all peripheral vision to the outside from each eye and this is more commonly referred to as tunnel vision. I had always thought of tunnel vision to be similar to looking through two paper towel rolls but I learned today that it is includes the area between the two tunnels as well. The thing for us to keep track of until our next visit is Max getting clumsier about walking into things.

After ophthalmology we went back to oncology where we knew we would have wait. There were two other very young children in the play area and Max went right up to the two Moms who were there talking and said, "Do you know what the book of the day is?" It is a real struggle for him to remember not to interrupt but here kids are forgiven an awful of lot social missteps. Anyway, Max was able to hijack the conversation and let everyone know that he had not only selected the book of the day but come with the question. He was also more than willing to help figure out the answer if there was any confusion. He retrieved the book for one of the Moms and she prepared to read to the two toddlers. Max had to get closer to see and hear the story, which had to be less than 40 words and he had read just a few hours ago, and in the process tried to walk through a wagon (wagons are often used as strollers/wheel chairs for toddlers). He ended up surviving just fine but everyone was terrified (including me) by how he reacted to what seems to have been just a fall to his knees. We did meet with his oncologist and much to my surprise she suggested that what we stay with his current treatment rather than change courses. This was good news as Tracy and I are both more than concerned about Max developing Leukemia regardless of how slim the chances. The thinking now is that the MRI that showed growth and movement in the tumor back in April was ahead of the impact to Max's vision. It could be that the nerves were already compressed but weren't suffering yet. What backs up this thinking is that the two eye exams that are 2.5 weeks apart show no significant change (yet do confirm a change). If the tumor had just started to damage the nerves they were expecting to see the damage progress, even in such a short period of time, as the area affected by this is crucial to both eyes and something more was very likely to have started going wrong. This means that the current chemo is likely to have stabilized the tumor. We don't want to wait too long to confirm this so Max will be scheduled for a follow up MRI and chemo/shots visit Sept 17 in Philly and a follow eye exam the following week on Sept 24 also in Philly. The only downside to the news is that while we thought he was going to take two weeks off of his treatments, instead Tracy will spent tomorrow coordinating insurance, hospitals, and referrals so that Max can get chemo on the two Tuesdays that he'll be on Block Island. Tracy was able to learn today that the hospital nearest to the ferry is in-network for our insurance so she just has to get contact information for everyone tomorrow so that they can talk and work out his treatment. Tracy and her Dad will take Max on the ferry back to the main land the first Tuesday and then I'll do the 2nd week (I'm only going up Aug 4, 5 and 11-18). With any luck it will all be arranged tomorrow and will only impact half a day for everyone. The next update will probably be from Block Island.

Thank you all for the love, prayers and keeping Max in your thoughts. We are all truly grateful.

Questions Arise

Today could have been better on a number of different levels but it also could've been worse. We had gone into today expecting to essentially get a rubber stamp at Children's Hospital in Philly that Max was doing well with his current chemo treatments and find out when Max would get schedule for surgery to put an access port in to make setting up his IVs a little easier. We had good reason to believe this as we had learned that the MRI Max had on Monday showed him to be stable. Unfortunately, that was only part of the picture. We learned during our visit with his neuro-ophthalmologist that Max appears to have had a fairly significant loss of his peripheral vision.

The apparent problem with the MRI is that it is not as detailed as one might think. Don't get me wrong, it is a truly amazing work of science and medicine. The alternatives of CT Scans or exploratory surgery for Max, especially given that he has had more than a dozen MRIs now, aren't even imaginable. Even so, the MRI gives a somewhat broad picture of what is going on in Max's head because there even millimeters matter and some of those millimeters are incredibly significant. While it is possible to see the swelling of Max's optic nerves as they come from the back of his eye to where they meet in the optic chiasm, it really isn't possibly to differentiate tumor and nerve in the chiasm to any great degree.

As I understand it now, after speaking to both the neuro-ophthalmologist and the neuro-oncologist, the tumor has further affect the optic nerves, most likely in the chiasm, which is causing the loss of peripheral vision. The chiasm is thought to be the source because both eyes showed the same dramatic loss and that is where the left and right eye's nerves cross on their way to the brain. What remain unknown are a few things though.

First, we don't for certain that Max has an issue. As it stands now the plan is to continue his current treatment for two more weeks and then visit CHOP again on Monday, July 30th to have his vision evaluated again. There is the possibility that today Max was just behaving oddly but I don't believe that scenario has good odds for two reasons: 1) He has always been very cooperative for his eye Dr. even when he has been uncooperative for the Dr. that does the initial evaluation and 2) His Dr. stopped me on the way out and said, "Dad, do you understand?" I replied with a simple "Yes" because both Max and Gwendolyn were with me but he followed up with "I'm very concerned." While I don't know him well I've seen him enough times with Max to get that this is no small change. Ugh.

Second, we don't know when this became a problem for Max. [This part wasn't discussed with the oncologist but will be July 30 - Tracy and I came up with this reasoning on our own while talking this evening.] Our theory is that the nerves could've been progressively getting worse but not shown detectable signs until after his exam in May. Extend the thinking a little bit and it seems reasonable to think that the chemo may have actually stopped a problem and that time might show stabilization or even improvement.

The reason that we are hoping the current treatment is effective is because the next choices all have side effects that we'd rather avoid, the worst being a less than 10% chance of developing secondary leukemia. That one frightens us quite a lot so will be trying to learn more in the next two weeks so that we can be well educated when discussing the next course of action on July 30.

In the meantime, a prayer for Max along the lines of "… hope Max was just having a bad day and the eye exam July 30 shows his peripheral vision is just fine …" might go a long way. Unfortunately, if that is what happens, Max will get the beating of his life for scaring us like that ;)

Quickly, before closing, the other 'level's that could've been better:
1) not getting up at 5:00 am after not being able to get to sleep until 1
2) not finding CHOP to be in the middle of a computer upgrade that isn't going as well as it should (I feel bad for them though as I have lived their pain)
3) Max eating his breakfast in the car, as I had thought he was, instead of not eating or drinking anything at all and then learning about that problem part way into a 3 hour session that could not be interrupted for food. (the instructions on eating the car had been very clear)

On the bright side, Gwendolyn did join Max and I today to see what Philadelphia is all about. It must seem to her that it is primarily about waiting. She did pick up that there is a problem and we've talked about it with her. She remains concerned but agreed there wasn't much to do until July 30.

A Fish Ate My Homework

Max had his follow up MRI today along with a visit to Endocrinology; all to see how things are progressing. As Max had done the MRI three months ago without sedation, we scheduled this one without sedation but had him fast since 4:30 am just in case he couldn't make it through the scan without staying still. Having stayed in the scanning room with him last time, I knew to bring a book and not bring my typical laptop, PDA, and other electronic gadgetry as I had to leave it all outside the room anyway. Thinking thin I had taken only the paperwork that I needed, a pad of paper, and my new paperback that I had purchased last night and placed it on the fish tank. That kind of preparation paid off handsomely as the entire bundle still sits atop my fish tank keeping the fish entertained while I'm here trying to explain to everyone that I really do have all the paperwork (referrals, prescriptions, test results, etc.) but I just forgot to bring it. I'd have thought I was beyond the old "… the fish ate my homework …" but alas, it just isn't so.

In spite of my incompetence, things so far had gone very well. We didn't hit any traffic at all so we arrived at the hospital early around 11:00 am. We weren't supposed to arrive until noon and then start the scan at 1:00 pm but with the early arrive and some sweet timing with everything else we were done with the MRI at 1:22 pm. Our next appointment wasn't scheduled until 3:00 pm so we had time to hit McDonald's as a reward for Max because, in his words, "I faced my fears so maybe I deserve McDonald's". His fear, of course, is NOT needles, being trapped in the MRI tunnel, or suffering a terrible fate from the truly caustic chemicals that are pumped into him weekly. No, the fear that faced was that of wearing a band aid. Oh - he's also terrified of rain - really.

When we got to the registration desk at the endocrine office I knew I was in trouble. I must have tucked away in the back of my mind just how afraid I am of these women and their ruthless pursuit of all paperwork. All is in my best interest, so that I don't end up stuck with bills that otherwise would be covered by insurance, but somehow I never seem to get it all right when we visit the endocrine office. Today, as you've already learned, was not going well paperwork wise so when she finished with most of the check-in questions and asked, "Do you have a referral?" I replied, "Yes" and held my breath while looking at my feet. When I realized the silence was a little too long and looked up I found that she was staring up at me between her glasses and slightly furled eye brow. When she saw my eyes were looking at her she said, " … and I will have this … ?" I pleaded, "Yes, I know, I'm an idiot. I called my wife as soon as I realized I had left it at home. She called the doctors to get test results faxed down but now that I'm here I realize that I didn't ask her to get the referral faxed down. I really do have it at home and I'm sure it has been filed but the pediatrician's office might already be closed - is it okay if I fax it tomorrow?" She was very kind and pointed to the fax number on the wall in a way that told me I wasn't the only lummox that did this on a somewhat regular basis.

We weren't there very long before they called Max back to see the nurse practioner for his doctor. Unfortunately, it took only a few minutes to realize that we were seeing her based on another doctor's schedule and she was afraid that our doctor might have left. She hurried off to try and get him to wait if he hadn't already left. Things sort of worked out in that she found but he did have to leave so we tried to hurry through the visit. Unfortunately Max was in a very talkative and silly mood so it did take longer than normal. Essentially we have learned that Max grew about 1.3 cm, maintained weight, still showed normal hormone levels for his age and actually had lower than normal growth factors since our visit 2 months ago. He said that the lower than normal growth levels just need to be watched. Alone they don't mean too much but if the trend continues in 3 months they'll need to re-evaluate the growth suppression drug as the tumor may have changed and is no longer impacting his growth hormones the same way. I was surprised that he was happy with Max's growth because it is a little rapid but he said that it might actually be a way for his chronological age to catch his bone age. The more I think about that now, several hours later, I'm a little confused but will simply trust that the news was essentially good and will not worry myself about my trying to figure it out right now. His shots will continue, we'll get more labs in 3 months and see them again in January 2008.

Max has chemo tomorrow at Lehigh Valley. Yes, this could've been done at CHOP today but he looks forward to seeing everyone at Lehigh Valley and we felt that it was worth an additional stick this week. On Thursday Max and I head back to CHOP to meet with his neuro-ophthalmologist at 8:30 am and his oncologist at 10:00 am. That is when we'll find out the results of the MRI as well as map out the road ahead.

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.

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.

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.

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.

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.