Monday, July 30, 2007

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 ( 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.

Thursday, July 12, 2007

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.

Monday, July 9, 2007

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.