Tim's Journey

Audi Magazine

2008-02-08T13:39:00.000-07:00

Audi Magazine came

out with their January issue and in it is an article titled "RIDE OF HIS LIFE a teenager gets his wish come true". It is a nice article talking about Tim's experience at the Lime Rock Lemans race complete with pictures.

Looking Better Than Ever

2008-02-08T11:35:00.000-07:00

The whole family really looked forward to this year's holidays. Tim came home from college and looked a little thin though his weight was fine so Lucille asked both him and his brother Michael to help her with ideas for meals while they were home. They of course suggested all their favorite meals and boy did Tim eat. He gained almost 8 pounds in two weeks. Finals were just before the break so that was really good. Total relaxation could really be enjoyed. He had a very successful first semester doing very well in all his classes.

He had his next round of scans and visits with his oncologist and radiation oncologist and all the reports were excellent. His reflexes have returned and the numbness is now limited to the tips of his fingers and bottoms of his feet. We found out that he now only has his right parotid gland because of the radiation. That's a salivary gland. The radiation wiped out one of them but he doesn't seem to be suffering any ill effects without it. The lone one on the right side seems to be doing the job just fine.

The next item on Tim’s agenda will be speaking at half time at a U of I basketball game to generate publicity for the American Cancer Society’s Relay For Life coming up in April. He plans on participating in the event. He is also slated to be the featured speaker at a joint Make A Wish Foundation/ American Cancer Society – Camp Rainbow Gold Fundraiser. It is the Share Your Heart Ball in Sun Valley, Idaho. Tim attended Camp Rainbow Gold last summer as a junior counselor and is looking forward to returning this summer to see the many friends he made there last year. The camp was a wonderful experience for him and he can’t wait to go back.

The next set of scans and doctor visits will be here before we know it during spring break. Tim looks forward to that as it brings his 1 year post treatment anniversary closer.

Four month scans looking good and Serving Up Wishes

2007-10-11T13:26:00.001-06:00

Tim and Michael were home for the weekend from school so that Tim could have his next scans and checkup and also for all of us to attend the annual Make-A-Wish fundraiser called “Serving Up Wishes”. Tim was the speaker for the evening.

The scans were all good. It seemed routine now to go in, get an IV, draw blood, go over to the imaging lab, get a CAT scan and back over to the MSTI clinic for a checkup. Routine is good in this case and we have another set of scans done with no issues and a “stable” report. I assume that means that from scan to scan, no changes are observed. Next time Tim is back in town, he’ll see the radiation oncologist for a thorough review of the scans of the neck area. The radiation field is quite evident now, since virtually no hair is growing in that area. Tim’s hair on his head is a little more coarse that before, closer to Michael’s hair in texture. It is also much darker than it used to be. But it’s all back (except for the area on his neck from the radiation).

Tim also reports that most of the feeling is back in his fingers and toes. This was a side effect of the vincristine – peripheral neuropathy. His fingers returned first and the toes are just about completely back. His left ear seems to also be clearer of hard wax. The only remaining thing now from the treatment is his lymphocyte count is still low. This causes him to need to continue taking an antibiotic on the weekends for a few more months to avoid any infection that the lymphocytes would normally take care of. He has been doing that (weekend protocol) since early in the treatment. Good thing he has no problem swallowing big pills!

The Make-A-Wish event was a well attended $125 a plate dinner fundraiser with a live auction and a few speakers. Make-A-Wish runs this in conjunction with the Boise State University athletic department. As a result, many of the athletic teams put together small groups of 5 or so student athletes to be the servers at the dinner. Hence the moniker “Serving Up Wishes”. Also present were several of the team coaches from tennis to soccer to football. The student teams compete for wish dollars which attendees purchase and then hand out to the students when they do an “activity”. We had some of the soccer players head a ball back and forth, wrestlers do a takedown and a pin, and football players sing a song. The kids and Lucille even got their shoulders massaged by some tennis players. The student teams completed for the most wish dollars collected. All of it goes to granting wishes for the kids.

These kinds of events bring out the big donors and they sure were there. Many of the live auction items were things like vacation rentals, dinner parties and the like. All in all, about $100K were donated which is probably about a third of the Make-A-Wish budget for the year. As I said before, if you’re looking for someplace to send your charity dollars, Make-A-Wish is a great organization to contribute to. In addition to granting wishes, they really have created a wonderful “family” of recipients and connections into the community. I hope the organization continues to grow.

Tim was the special guest at the dinner and as such put together about a 5 minute speech on his battle with cancer and the wish granted for him. It was quite an experience for us all. He was remarkable in his delivery and got a standing ovation at the end. Many folks came up to him afterward and congratulated him on his speech. I think it was very well received. As a precursor to the speech, the news item on Tim produced by the local NBC affiliate KTVB-7 was shown. It chronicled Tim’s year as a senior in high school, his passion for cars and how that led to his wish to see a Le Mans race and the experience there. It was a great lead in to Tim’s speech. The stage was a rather large square in the center of the room selected so the auctioneer could work around the stage and have access to the dinner tables. For a speech giver, it was daunting. There was no podium so Tim had to walk around the stage and deliver to all. He really did well, using notes a few times but really engaging the crowd with his words. A very proud moment for us all.

He covered the diagnosis, what it was like to deal with cancer for a year, his wish and the experiences there. There was no way we could have planned any of the adventure we had on the Make-A-Wish trip and the folks there really served up a wish for us. Now that we have been able to attend a Le Mans race we will likely return in the future to one. It will remind us of the last year and the way that the Make-A-Wish Foundation (both Idaho and Connecticut), the North American Audi race team, and the Lime Rock park organizers made a wish for Tim come true.

They sure know how to serve up a wish.

--bob

What's next?

2007-09-06T23:57:00.001-06:00

In early October Tim will be coming home for his next set of scans. He will also be speaking at a Make a Wish Fundraising Dinner called Serving up Wishes. This will be a new experience for him speaking to a large audience but I know he'll rise to the occasion. BSU athletes will be participating in the event so come join us.

Tim climbs another mountain

2007-09-06T14:42:00.000-06:00

Labor Day came and Tim joined Michael and some of his friends at Mt Borah. Their intention was to climb to the top and that they did. Four out of the seven climbers made it all the way.

Tim and Michael were among them. I believe that altitude was a major factor for those that didn't make it to the top.

What an experience and accomplishment. Doing that while just being three months out of treatment is something to be proud of.

Off to University of Idaho

2007-09-06T14:40:00.000-06:00

Tim arrived at U of I on Friday Aug 17th with all his belongings in tow. Lucille was already up there with Michael helping where she could with setting up Michael’s new apartment. With four people unloading it didn’t take any time at all. With Vandal card in hand books were purchased and he was ready for his first day of class. Things are going well and he sees Michael every now and then. He has had dinner at Michael’s apartment. Nice to have some place to go to get away from the dorm.

Tim attends Camp Rainbow Gold

2007-09-06T14:38:00.000-06:00

Campers are age 5-16 yrs so he received a weekend of training and attended Camp Rainbow Gold as a junior counselor. He had so much fun at camp that he cannot wait for next year. He was sad that camp was over so quickly and wished camp was two weeks long instead of one. He made a lot of new friends that have shared the same path. He has also decided that this is something he wants to continue doing. He now wants to take care of his "survivor's responsibilities".

Port comes out

2007-09-06T14:32:00.001-06:00

With clean post treatment scans under his belt he is ready for his port to come out. Its removal is a very symbolic event and a huge milestone. He was so excited for this day to come. If he had his way he would have liked to have it removed the day after his last treatment but that just isn’t the way they do things. They wait till post treatment scans are done.

Make a Wish trip was more than Tim expected

2007-09-06T13:15:00.000-06:00

Our first day in Connecticut was a free day so we spent it at Lake Compounce, an amusement park. A lot of roller coaster rides were taken and everyone had loads of fun.

Tim was the Grand Marshall and a guest of the Audi team. This was definitely not what he expected and beyond his wildest dreams. His duties as Grand Marshal were as follows:
1. Start the race with the phrase : Drivers start your engines!
2. Wave the green flag as the drivers pass the start after their warm-up laps
3. Hand out trophies to the winners of the various classes

He was mentioned and welcomed in the Lime Rock Race Book. On qualifying day he took some laps in the BMW M5 Lime Rock Pace Car. Too cool!

As a guest of Team Audi the entire family experienced an awful lot. We met and had breakfast with the Audi drivers. Chatting with Allan McNish (Scotland), Dindo Capello (Italy), Emanuele Pirro (Italy), and Marco Werner (Switzerland) was quite the experience. We talked about cars, racing, autocross, being parents of teenagers, soccer and what being the grand marshal meant to Tim. Emanuele joked that Tim should give the Audi drivers a head start since he should have the authority to allow them to start their engines first.

We were given a tour of the Audi paddock and an up close and personal view of their cars. They keep everything under wraps since these cars are prototypes. No pictures please. Touch and look all you like but no pictures. Bob, Timothy and Michael were in heaven as they all talked tech. Becks and I did a lot of smiling. When Audi heard that Tim had taken some laps in the BMW pace car they offered him a ride in their R8. Tim couldn’t believe his ears. Not too many have laid eyes on this car in person let alone take a ride in one. We had full access to their hospitality suite which was really nice. We had a nice air-conditioned place to sit and rest. We were allowed VIP parking thus enabling us to park our car practically at its doorstep. Breakfast and lunch were served while snacks were available throughout the day for both qualifying and race day. That suite turned out to be our home base so to speak for those days.

On race day Timothy was to perform his grand marshal duties and he did them well. He was also asked for some comments over their public address system before the start of the race. He has the green flag that he waved at the start of the race in his room at home. One of the most exciting parts of the day was taking a Hot Pit Tour. Michael and Becks were able to experience that with him. They all dressed in the Audi Pit uniforms and got to hang out in the pit during the race.

After the race, it was off to Winners’ Circle for the Trophy Presentation Ceremonies. What a thrill it was to hand trophies to Allan McNish and Dindo Capello for winning their class. Photos with Podium Hats and Trophies were taken, confetti thrown and champagne was sprayed about. Tim managed to stay out of the way. Allan gave Tim his Podium Hat after the photos were taken and it hangs on the wall in his room. We all also have hats that all the Audi drivers had signed at our breakfast together. He was given huge banners by track officials and the Audi folks to take home as souvenirs. We still have to find walls large enough to accommodate them. We spent a day in New York City visiting the Museum of Natural History, driving through Times Square and by the Empire State Building. We also drove around Bob’s old neighborhood in Flushing. The next day we did some kayaking and then visited grandparents in New Jersey and then it was home again. None of us will forget that trip. Make a Wish definitely outdid all Tim's expectations.

First off treatment scans are good!

2007-09-06T12:56:00.000-06:00

An awful lot has happened since the last entry. Here’s the reader’s digest version. All post treatment scans came back with no trace of tumor and no hint of scar tissue as a result of the radiation treatment. There are still some residual side effects of treatment that may take up to a year to go away but with any luck they’ll disappear sooner.

Mark Johnson of Channel 7 interviewed Tim for a piece they were doing for the Make a Wish Foundation. Tim really enjoyed doing that. They were also able to capture Tim’s reaction at the announcement of what was in store for him on his trip. ….. His trip was to take place the following week. Here is the link to Channel 7's piece: http://www.ktvb.com/video/video-index.html?nvid=157243&shu=1 or at: http://www.youtube.com/watch?v=EgSbuY7lfYs&feature=user

First post-chemo scans this week!

2007-06-26T09:52:00.001-06:00

Well, the time has come for the first set of scans to be done this week. Tim goes in on Wednesday for both MRI and CAT scan series. He’ll be almost 5 weeks out when these scans are done. On Friday, we’ll review the results and although no one is expecting to find anything of interest, there is always that possibility. The MRI scans are also being done to look for any evidence of the syrinx.

Tim is working now at the local water park. He’s not working major long shifts yet but it does put some money in his pockets. His hair is starting to come back in and I noticed the other day that he has some eyebrows coming back in as well. There is no hair coming in the radiation field on the back of his neck. That might take a longer time but may also be permanent. With a long(er) hair style, it would likely not be noticed.

Even some improvement is felt in Tim’s toes. The vincristine did its thing and pretty much caused all the fingers and toes to go numb. Reflexes are gone as well. But now Tim’s toes are tingly, so perhaps that will continue to improve and his fingers will follow. Tim never really developed the vincristine “walk” which is caused by loss of fine muscle motor control. He doesn’t complain any more that walking hurts and has even visited the YMCA a few times to lift weights and run a little.

Weight is up a few pounds and so that’s also a good sign. With the weight lifting going on, perhaps he’ll add some bulk. He still looks thin.

Next week we’re off to our Make-A-Wish trip to the American Le Mans Series race at Lime Rock in Connecticut. The Audi R10 cars will be there and this is our favorite team. The #1 Audi car won the 24 Hours of Le Mans in France last weekend, so they will be pumped up for the continuation of the ALMS in the United States. Too bad the other two Audi cars at Le Mans came into trouble early in the race. It would have been great to finish 1, 2, 3. Peugeot introduced their diesel cars but I don’t think they are coming to the ALMS series.

--bob

Two weeks out

2007-06-06T12:54:00.000-06:00

It’s almost two weeks now since the last chemo treatment for Tim. We’ve been to the clinic twice since then. First was at one week out for counts which returned acceptable numbers. The clinic was ready to give Tim some platelets but his count was 48, low but not critical to do a transfusion. Both Tim and I thought he had already been through the low platelet trough so we were not expecting a transfusion. Surprising though was that his neutrophil count was 0.9, higher than we thought it would be. From past experience we had been expecting close to zero sometime around one week out from chemo. The clinic was convinced that counts were still going down and so they wanted another data point and we were back in on Monday to do that.

Again, the clinic thought he would need platelets, but we were pretty sure that would not be the case. So instead of taping his port, it was just a stick for counts. And things had improved. All his counts were up. Platelets still low but higher at 75 and neutrophil count of 1.1. Even red cells, hematocrit and hemoglobin were all up. Not quite to normal ranges but definitely recovering. Tim feels a lot better as well. So we were sent home. A good thing!

Graduation was held on Thursday and Tim was able to make it. Since we didn’t yet have data on counts, we didn’t let him “hang” with friends after the event. He still has the pins and needles feeling in his fingers and toes and walking was a little tough for him on Thursday. But on Friday, he was able to attend another friend’s graduation party.

On Sunday, it was autocross day. I subbed in for Tim’s work shift since it was really hot that day. He got in 5 runs in the GTI, placed first in his class and in the top 25% for adjusted times. Michael also drove and did well in the TT. They need to drive the same car some time and see how they compare head to head.

So now, its rest, recover, gain some weight and start to get back in shape. To that end, Tim and Michael made it to the Y and worked out some. It was a surprise to Tim (but not me) that he doesn’t have any endurance and strength is very low. It will take time to build back up. He’ll try to start up on his summer job shortly.

I think we are through the potential for a hospitalization due to fever. Just two weeks out and Tim is already making a lot of strides in recovery. Next up are scans at the end of June to take a look at that pesky syrinx and make sure that there are no cancer cell clusters in the lungs.

--bob

Treatment is done!

2007-05-30T10:32:00.000-06:00

Cycle number 14 was done last Friday. This was the last triple whammy and as has been the case, we still struggled with nausea Friday and Saturday. We tried the Aloxi and Zofran combo this time thinking that it might work but it didn’t quite do the job. By Saturday, Tim was able to keep some soup down and by Sunday was back to eating again. It was a quick recovery.

Tim concentrated on gaining weight the previous week and was able to get about 2 lbs on. Now it’s counts this Friday to see where his neutrophil count is and to see if platelets have started to recover. Tim did not get a shot of Neulasta this time. The logic is that since he doesn’t have another chemo to go through, there is no need to make sure his neutrophil count recovers in time for the next dose. One benefit of not getting the shot is that he avoids the bone pain that results when his bone marrow is boosted with the Neulasta. The disadvantage of course is that he will likely become neutropenic. Hopefully that does not lead to a hospital admission because of a resultant fever. We’ll have to monitor that closely for the next week.

Graduation is this week. For seniors school has been out since Friday. Tim spent his whole senior year undergoing chemo treatment. We are all glad that this phase is now over.

After this week, Tim will get a few weeks off and then we’ll go in for a series of MRI scans followed by the removal of the port. In between those, we’ll be on our way to Connecticut for the American Le Mans Series race at Lime Rock Park. This was Tim’s Make-A-Wish request and I’m glad he’ll be able to experience a trip, do some touring, and watch the car race.

--bob

Last Treatment This Week!

2007-05-23T13:54:00.001-06:00

This Friday will be Tim’s last chemo treatment. Hopefully the Aloxi/Zofran combo will work for the nausea and he’ll just have the normal two-three day recovery where he’s just tired. Then the high school graduation ceremony is on Thursday. Even with the one week total delay, he should still be able to attend graduation. It is such an exciting time to be done with chemo and be graduating from high school.

Following in future weeks, we’ll have to schedule the removal of the port and Tim will have to have a series of MRI scans to be jointly shared among the oncologist, radiation oncologist and neurosurgeon. Over the last year, the syrinx hasn’t shown up on CT scans but we have to go back and look closely with MRI rather than CT scans to see if the syrinx is gone, hence the reason to involve the neurosurgeon again. Hopefully, the syrinx is gone. Tim still remains symptom free in that regard.

The port removal will be an outpatient surgery similar to the kind used to put it in. A few internal stitches and some super-glue and he should be good to go.

The port of course is necessary since the chemo drugs would corrode a small vein. The port actually goes in through the jugular vein and almost all the way to the heart where lots of volume quickly dilutes the drugs. The port requires preparation to use by pushing saline through to clear the line and then when the port is de-accessed to again flush it and leave a heparin mix behind in the line. This process is most distasteful to Tim since that quick saline push and the heparin instantly cause him to have a metallic taste in his mouth. It goes away quickly, but every time it’s there. We’ve used all sorts of masking candy from sour worms to Skittles to Mike ’n Ikes. Recently though Tim has been able to just get through the taste since it is short lived. He really doesn’t like any of those candies anymore.

However, I am happy to report that he’s eating ice cream again. For a long time, he wasn’t thrilled with ice cream and avoided it, but perhaps there has been additional improvement in his taste recovery. The last several treatment spaces he has been trying to add some weight and has been at least successful in maintaining weight. He thinks this week he’ll be a few pounds up.

And he now has a wisp of hair. Very light and very thin but it’s there. We expect it to fall out once more but it’s a good sign that his hair wants to come back quickly. Hopefully in 4 weeks or so after the last round of chemo, the hair will start to come in again.

Tim’s bone marrow will also appreciate the end of chemo. His ability to produce blood cells has been depressed for so long. Even using Neulasta to increase white cell production, the bone marrow is just burned out. He’ll get one more dose of Neulasta to try and minimize the number of days where his neutrophil count is zero. That’s about all it does now. So starting next week, we’ll work on nutrition to rebuild.

No Treatment, Just Counts

2007-05-23T13:50:00.001-06:00

We’re getting near the end of the treatment now and between the May 4th treatment and the final one, there are just checkup visits. However, as has been the case, Tim’s platelet count was low at the one week out checkup. The oncologist wanted to transfuse some platelets even though Tim had already gone through the low platelet symptom of a bloody nose earlier in the week.

We explored a little more about platelets and the fact that they don’t seem to “stick” with Tim and raise his platelet count the 60 thousand or so that it should. When he’s been in the hospital with a fever and also getting platelets, it seemed his platelet count would only go up a few. So this time, he was scheduled to come back to the clinic on Monday for counts again and his platelets had only gone up from 15 to 87. But I think his bone marrow was already going to do that. So we asked and found out that some patients just burn up the donor platelets pretty quick. We observed Tim’s temperature during the transfusion and sure enough his temperature shot up but then went down. Seems like getting platelets doesn’t help Tim a whole lot.

Tim’s white count was close to zero at that one week checkup as well. So he needed to be careful through the weekend. But by that Monday’s blood count, the white count had really recovered. The Neulasta has this effect of overshooting neutrophils so this was expected. His count dropped again at the end of week two but is still OK.

A change for the better was that Tim did not have a hospitalization after round 13 for fever. That extra week in-between round 12 and 13 really helped I think. It looked tricky for a while when he was getting platelets but his elevated temperature didn’t persist.

With the warmer sunny weather the topic of being outdoors in the sunshine came up. While on chemotherapy Tim is much more sensitive to the sun’s rays but once chemo is over he shouldn’t be any more sensitive than anyone else. However, since he has also had radiation treatment, that area will always require sunscreen and monitoring. His radiation treatment area is one that is exposed so extra caution with hats and sunscreen will need to be taken. At least until his hair begins to grow back.

Cycle 13 Goes Forward

2007-05-23T10:46:00.000-06:00

Cycle 13’s triple whammy happened on May 4th, a week later than originally planned. That extra week gave Tim the time his bone marrow needed to resume white cell and red cell production. He actually felt better and stronger than he’d felt in a long time. Even this late in the treatment process we are still trying to figure out the best combination of anti-nausea medications. It just didn’t seem like the Aloxi was as effective as it had been when he started using it so it was eliminated and Zofran was substituted to go with the usual Scopolamine patch, Ativan and Dexamethasone. He didn’t have any Compazine so was awake for a lot of the day but he was sick a lot of the time. He was also sick a lot the next day until we could get it under control with the Zofran every 4 instead of every 6 hours. It seems like he needs the extra Zofran. For the next and last treatment, we’ll go back to Aloxi with Zofran as a “booster” and see if that gets him through the first day a little better.

We talked with the staff about what happens after the treatment is done. CT scans will continue every 3 months for up to 1.5 years and then gradually taper down to a lower frequency, eventually ending at one year intervals. As is typical for cancer, the 5 year mark will be critical. After that he is likely to need periodic continued CT scans.

First Delay

2007-05-01T10:31:00.000-06:00

Timothy went in Friday all set and ready to go for cycle 13’s triple whammy. He was so looking forward to be able to say that he had only 1 triple whammy treatment left to go and since he is on the last break from weekly vincristines, would have only 1 treatment left to go in the whole process. NOT! His white count was too low to proceed. Again the caution about being around large crowds and/or people who may be ill. He was disappointed that he couldn’t just get it over with but he continues to always look for the bright side of things. The upside of it was that he could hang with Michael who was coming home again for the weekend, attend the training session scheduled for the summer employees at Roaring Springs, and attend church on Sunday when Rebecca would be confirmed. Plus he would be feeling pretty good for the weekend. Another upside was that Tim was able to do a photo shoot for the Make-a-Wish Foundation with BSU’s Bronco football coach Peterson. Recognize anyone else in the picture? This is in preparation for a dinner-fundraiser in October.

So we shall see if the week’s extra time is enough for his bone marrow to get going and do its thing. He had been getting Neulasta since cycle 9 and the purpose of that was to fertilize the bone marrow so to speak to make white cells to decrease the amount of time that his white count would be in the critically low area, hence to lower the risk of infection and prevent delays in treatment. Well, I suppose we’re not all that sure it is being as effective as it used to be since he has been hospitalized with fever during the last 2 cycles in spite of receiving Neulasta and it didn’t prevent a delay this time. It looks like his bone marrow is just too worn out now that after the Neulasta runs out it is unable to pick up its job of white cell production and the white count drops. The white count is usually at its highest immediately before a whammy. This time it wasn’t very high and the type of white cells that are part of the body’s army to fight infection was below the threshold limit to go on with the next treatment. He is just out of juice.

Getting Closer

2007-05-01T10:16:00.000-06:00

The lower cyclophosphamide dose was used for this cycle and Tim seemed to feel a little better about it though he still encountered the same issues with nausea and threw up the same number of times that he did with the higher dose. We were hoping that the lower dose doesn’t beat his system up as much as the higher dose but as long as he feels that it went better I guess we’ll go with it and see how the rest of the cycle goes.

It’s been a week since his cycle 12 whammy and Tim had a rather lengthy nosebleed yesterday afternoon. We tried the recommended Afrin to get it to stop but even that didn’t do it. Sitting quietly with pressure for about 20 minutes was what did the trick. Other than that he felt as well as could be expected. Makes perfect sense since his platelet count came back down again. His red count was borderline and could wait a couple days if he didn’t want to hang around long enough for a transfusion of packed cells that day. It was also time for his next treatment of vincristine. He felt a little warm upon examination so they repeated taking his temperature which had been normal 20 minutes before when he walked into the clinic. Oh no. It was up to 102.6. They would not be letting his leave but instead admitted him to the hospital yet again. He had stubbed his toe almost a week ago and we were religiously treating it with Neosporin several times a day but they still were very concerned that there was always the possibility that the toe could be the source of the fever so they kept a close eye on it.

Tim was very disappointed because it was another weekend of big plans. Michael was coming home for the weekend, Rebecca had a piano recital that night, and he planned to make it to a game his soccer team was playing on Saturday. He had not as yet been able to attend a game because of treatment etc. and this was supposed to be the weekend he could go see them play. Since he wasn’t going anywhere, they went ahead and ordered up the 2 lumps each of platelets and packed red cells. Took a long time to get the fever down this time and his nurse said that he was probably starting to feel a little better when he started getting feisty. We cannot say enough about the wonderful staff both at the MSTI clinic and up on 4S of St Luke’s. They really work hard at trying to make your stay as comfortable as possible. He was released Sunday but stayed home with a low grade fever till Wednesday at which time he was to make his Senior Project Presentation. He managed to get that done.

That weekend Tim started to feel pretty good again and was able to participate in another autocross event. This time he and Bob raced the same car and much to Bob’s horror Tim beat him by about 2 seconds. Spanked him he did. Tim was all smiles; he’s really having fun now! Must be all that Xbox racing starting to pay off.

Thursday the following week brought the Mayors’ Awards to Youth. Tim was nominated by his Centennial guidance counselor and we attended the ceremony at city hall. It was a very inspiring evening with stories of accomplishments by many area students. Mayor Bieter commented that this event was something he and his office really looked forward to doing since a lot of other events don’t quite elicit the same joyous sentiments.

Timothy was interviewed by the Idaho Statesman earlier that day so it was indeed a busy day. The piece they did appeared on the paper’s front page and here is the link: http://www.idahostatesman.com/102/story/81344.html The length and prominent location of the piece was a bit of a surprise for us all.

Cycle 11

2007-05-01T09:50:00.000-06:00

Cycle 11 came and went and was a bit of a tough one for Tim. As the treatments progress Tim has gotten more tired and worn out both physically and mentally so looking at the number of triple whammies ahead is difficult. Some of the anti-nausea regimen will have to be re-evaluated because they aren’t working as well as they used to. One option that was considered and will be taken is to go back to the original dosage of cyclophosphamide used in the first 4 whammies. That would put the dosage to almost half of what he’s gotten the last 7 cycles so hopefully that will make tolerating the number of cycles ahead a little less daunting. We’ll also go a few days longer with the anti-nausea meds and eliminate those that have lost their efficiency because they bring their own set of side effects.

Tim is also back to weekly treatments of vincristine. We are in the final push. This week his platelet count was well below the threshold and he did have some bruising so it was time for a platelet transfusion. He received 2 units of plateletpheresis. A donor is able to donate a lot more platelets via pheresis than the amount of platelets found in a regular type of donation of whole blood. This is accomplished by separating out the platelet component of the blood in a special centrifuge and then returning the rest. The donor replenishes what was harvested in about 24-48 hours and is able to donate more often which is good because platelets have a life span of just about 5 days so they always need more donors. Also, they are able to collect a larger volume of platelets without having to pool units from multiple donors and thus decrease the risk of transfusion.

Tim’s white cell count was almost negligible so he was cautioned about staying away from large crowds or people who were sick. The next day was Friday the start of spring break and he had big plans to hang with friends and have some fun. Alas it was not to be. He spiked a fever Friday afternoon and was admitted to the hospital. His blood work on admission showed that everything was down- white cell count, platelet count and red cell count. More transfusions were ordered and this time for both platelets and packed red cells. He was released Sunday and advised to lay low. He said he wasn’t planning on playing any football just maybe going bowling sometime in the next few days. Bowling was discouraged so sitting at home playing Xbox would just have to do.

His next treatment day brought another new event. His central line appeared to have some sort of blockage because they had difficulty drawing blood from it. The solution was to dissolve the clot by administering TPA, which is often used in treating heart attack, stroke, or pulmonary embolism. That seemed to do the trick and it was onward with treatment.
By Thursday of spring break Tim was well enough to venture out of town for a short while to attend Vandal Friday at U of I for prospective fall freshmen. It happened that Michael had a band concert so the rest of the family was able to attend that though Tim stayed at the hotel to rest since he still didn’t have a whole lot of energy. His schedule was trimmed down to the essentials of visiting with the advising staff, signing up for his fall classes and getting his dorm room for the fall assigned. He was content to have family time during meals.

Autocross came on Sunday and Tim had a lot of fun with that. It didn’t take too much energy and he conserved what he had by sitting and watching from the sidelines during down time. He raced his GTI while Bob raced the TT. His best time was only .02 seconds off of Bob’s best time. Yeah!

Time for a transfusion

2007-03-12T17:37:00.000-06:00

Well, the time finally arrived where Tim could no longer make it through without getting some packed red cells. His hematocrit, red cell count and hemoglobin were below the threshold and he was doing a lot of sleeping and would still be tired. There were no chemo treatments these last two weeks, just a checkup on Tuesday where blood was drawn to see what the counts were like. His neutrophil count was really good of course now that he gets Neulasta as part of the triple whammy sessions, but the rest of his counts – not so good. His platelets were obviously low over the weekend since he was getting bloody nose discharges. That seems to be OK by Tuesday and the platelet count was OK and likely rising. Just those dang red cells!

Tim turns out to be AB+, so he can more or less receive any blood that is available. They do a type and cross of course to match as many factors as possible. He ended up getting two units of A+ packed cells on Wednesday.

I have to say that getting blood has both its pluses and minuses. On the minus side or course is the risk of getting some other disease from the donated blood. That has gotten a lot better through the pre-screening in the donation process but also in the tests that are performed on the blood before it is used for a patient. I myself was turned down this year because I had been in India, a known location with endemic malaria. But tests for HIV, hepatitis, and other problems are really quite thorough. The good thing about getting blood is that it renews your ability to transport oxygen and nutrients. Tim had a lot of energy that night and continues to feel better than he has in a long time. Now some questions remain as to whether he will need ongoing transfusions or if this may be the only time. We will of course find out and I’ll explore this line of questioning in his next visit to the clinic.

But for now, Tim is feeling pretty good, has leveled out of the weight, is sleeping more normal hours and had some time to spend with friends and do some work around the house. All thanks to someone else’s generosity in donating blood. So if you are blood donor, thank you so much. And if you have been thinking about donating blood, give it a shot. There are a lot of people who could use your generosity.

--bob

Lots going on

2007-03-05T11:46:00.000-07:00

It’s yet again been a while since I’ve written. We’re now two more triple whammy cycles into the program and have also have a set of diagnostic scans done. Along with one hospital stay just to add a new dimension to the whole thing.

After cycle 8, Tim’s neutrofil count went to zero. He started to run a fever the following weekend, got better and then the fever returned. It was above the threshold of 101.5 and so he had to be admitted and spent a few days in the hospital while they administered antibiotics, did tests, gave him some RBC and neutrofil boosters and monitored him. It was Lucille’s turn to stay overnight and so she did just that. In the end, no infection was found and so the belief is that he just experienced a zero neutrofil fever. Something that apparently happens to some patients.

What that did do was make it imperative to administer Neulasta as part of the whammy cycles. And so these next two cycles included that additional step. His bone marrow responded well and at cycle 10, his neutrofil count was quite high into the normal range.

Cycle 9 was done a little off timing on a Monday rather than Friday to allow Tim to fit some fun into his schedule the previous weekend. But it was costly because he wasn’t able to recover quickly and spent most of the week away from school. The fun stuff was to participate in the HS Honors band as one of the tuba players. A guest conductor works with the students on Friday afternoon and all day Saturday to prepare 5 pieces for a concert on Saturday night. Students participate from a lot of the local high schools and so the group is quite large. It was a great experience for Tim and for us to attend a concert that also included the band from BSU.

And so it was time for 6 month scans. No matter how much the doctors indicate that they don’t expect to see anything it still is a nervous time because what if something does show up? This set was to be used by both the radiation oncologist and the regular oncologist. The scan was limited to the neck and chest and so Tim did not have to drink a contrast medium for the lower abdomen scan. Just the quickly administered IV contrast while getting the CT scans done. When we reviewed the scans, the radiation oncologist was extremely pleased. He spent a lot of time reviewing where the tumor had been and how the tissue looks now vs. at the beginning. And also the lungs which are the likely home of new tumor sites are all free of indications. Woo-hoo!

Tim is on a vincristine break again since cycle 9. After this next cycle (#11), he’ll have four more vincristine treatments and then after cycle #13, no more. These are good breaks to get because his feeling in the toes and fingers gets wiped out and recovers a little when he is on break. Hopefully, this last set of full on treatment doesn’t dig too deep into his reserves. He also now has a learned response of getting nauseous when he goes to the clinic, so anytime we can avoid that, it’s a good thing.

Next up is just a blood count to see he’s responding to the Neulasta. Over this past weekend, one could tell his platelets were pretty low because he was getting bloody discharges when blowing his nose. But I did get to spend a whole weekend with just he and I, since mom and his sister were off at a soccer tournament. His strength was starting to come back from cycle #10, so we were able to go out to a movie.

--bob

The New Year arrives!

2007-01-13T16:17:00.000-07:00

Today is cycle 8 of the triple whammies and since the last update a lot has happened. After radiation was done, Tim experienced progressively worse side effects which included the sore throat, loss of taste, sunburn and peeling, and the ear drum being irritated. Tim lost a lot of weight since the combination of a sore throat and lack of taste made for virtually no appetite. He went just below his starting weight but has since regained a substantial amount of it back.

To administer the radiation the beam has to go through the body on the way to the site. Although the dose is done from 9 different angles to avoid as much collateral effects there still is a lot. That’s why the throat lining became very inflamed. Tim described it as having splinters in his throat. Throat pain like that is hard enough but when stomach acid goes by, it gets very acute. Something had to be done for both the pain and the nausea leading to vomiting. This time we took both the pharmacological and mental approach. There was potential that the sore throat was from a yeast infection and so an antifungal was prescribed for that. Also to get some immediate relief a topical anesthetic was also prescribed. The combination was successful. Within just a couple of days, Tim’s throat was feeling really good. And his taste started to come back so eating got back to normal.

Tim’s ability to recover continues to amaze me. There is definitely a lot in play; simply his youth and overall general health, the mental disposition he has, and of course the prayers on his behalf. There are so many of you who are constantly petitioning God for healing on Tim’s behalf, it is really amazing to see things actually happen that defy earthly explanation. For instance, in the follow-up visit with the radiation oncologist when Tim reported that his taste was pretty much back to normal, that was very surprising since the expectation for this was several months, not several weeks. I’m happy to report that Tim is now back to a more reasonable 132 lbs having quickly gained back the lost pounds from not eating.

The other approach we started to take was dealing with the mental aspects of anticipating chemo treatments. Tim had started to build the anxiety levels up to the point where he would start to feel nauseated several days before treatment. This was even for treatment that normally does not induce nausea. Simply having to go the clinic, getting his port-a-cath accessed and drawing blood was training his mind. The clinic of course has some help for this and Tim has been seeing a hypnotherapist to help him with the anticipatory nausea. He has been to three visits and now has some tools to deal with the feeling of nausea.

This looked like it worked this time around because Tim has not thrown up for this round of chemo.

For this round we are back to the 2.2 g/m^2 of cyclophosphamide (the higher dose) along with dactinomycin and vincristine. The first two are the ones that whack the bone marrow and production of white blood cells. So this time we talked with a colleague of our oncologist about the use of Neulasta to boost the kind of white blood cells needed to fight infection, neutrofils. Tim had very low neutrofil counts last week at 100/micro-liter, but had already recovered to 2,200 in the next week. So in the end, after consultation we’ll skip the Neulasta for this time. We’ll monitor the neutrofil counts and see if they go really low and if so, we’ll use Neulasta for round 9. This is a pricey medicine at about $3000 per dose. It is a protein made by E. Coli that have been genetically altered to make it. It is a stimulant for the bone marrow to specifically produce neutrofils or as Tim’s oncologist calls it “fertilizer for the bone marrow”. Tim has had no issues with low neutrofil counts (they would primarily be a fever), so this is likely a good strategy to avoid administering drugs that may not be needed.

So, welcome to the New Year! We are now in the second half of treatment and through a few more issues. I’m hoping that the remainder of the journey now becomes easier for Tim. He’s through the radiation and has some tools to deal with the nausea. In February, we’ll have the six month set of diagnostic tests to conduct and that will be a milestone to celebrate.

--bob

Radiation Done!

2006-12-10T21:04:00.000-07:00

This last week on Tuesday was the final radiation treatment. A milestone has passed. Of course all the issues from radiation show up near the end and then continue to progress into the week. Tim has a really bad sunburn, his ear drum is irritated and he has a sore throat in addition to the taste issues. The skin around the incision is very fragile and so just a simple touch in the area causes the skin to break open. Hopefully the sunburn has peaked and the skin can begin to heal. I think he’s getting tired of having to have a continual application of Neosporin on the area. We also have a steroid and anti-biotic med for the eardrum and that has certainly helped there. His taste is slowly returning now and so he’s starting to eat again. He had lost almost all the weight he gained since August in these last three weeks. Living on cereal just doesn’t cut it.

Tim is also getting another two week break from chemo and doesn’t have to go into the clinic next week. The following week will be a triple whammy again of the three main chemo drugs. We’ll be back into the routine of triple whammies and vincristine on the other weeks. Cycle number 6 was done in the clinic with a short stay in the oncology ward at the end. He didn’t do as well with the nausea this time. I think at this point a lot of it is anxiety around going into the clinic for the chemo treatment. The good news here is that we’re now expecting 14 cycles of whammies rather than 16. So this means he may be done in May with mid June being the point that the doctors expect his blood counts to be back close to normal. And we’ll be half way done in a few weeks.

--bob

Make-a-wish

2006-12-10T20:32:00.001-07:00

Now, here’s a great charity to contribute to. If you’re looking for some organization to make an end of the year contribution to, pick this one. Find your local chapter and send some money their way. The Make-a-Wish foundation in Idaho probably grants 60 or more wishes a year to children diagnosed with life threatening diseases. We were contacted by the foundation and began the process of selecting a wish that they might be able to grant. The first thing on Tim’s list was to meet Michael Schumacher the multi-time formula one champion. And perhaps do it at an F1 race. It might still be possible even though Schumacher retired at the end of this last season. But some car race event would be what Tim would like to attend. So he’s also looking at a Le mans race as something to attend. It would be real sweet to do such a thing. He has time though to decide because he really can’t go anywhere until treatment is done. That will be at least until June next year when we expect the treatment to be done and his counts to have recovered sufficiently to allow him to be in crowded areas.

This is also the time of year that make-a-wish does a lot of fund raising. Tim has been able to participate in some of those events. He’s been interviewed on the evening news during the outdoor weather forecast, been invited to the annual induction ceremony for the Humanitarian Hall of Fame, attended a Steelheads hockey game in town and as part of that went down on the ice in between periods to shoot rubber ducks to the center spot, been interviewed on radio, and featured on the evening news as being sponsored by the local CBS affiliate.

--bob

Medicaid comes through

2006-12-10T20:32:00.000-07:00

OK, so all this treatment costs a lot. Even with a great insurance policy, we have hit the maximum out of pocket expenses for the year for Tim. That doesn’t include co-payments for clinic visits, hospital stays and meds. It all adds up quickly. We’ve been keeping a total of all the actual expenses and it is quite a lot of money. There is however a program in Idaho called Katie Beckett that seeks to cover the expenses beyond primary insurance and Tim qualifies for it with his illness and income (essentially zero). So we just received his Medicaid card. We had been told to not pay the bills and inform the payees that we’d get them a Medicaid number shortly. That doesn’t keep them from re-billing though. And we had just gotten a number of collection notices for past due accounts. The Medicaid card came though at just the right time.

--bob

Radiation almost done!

2006-12-10T20:31:00.000-07:00

And of course a whole new set of side effects to deal with. As I write this, there are only two more sessions of radiation to go through. I dare say it has become routine. We go down every day after school for the 4 PM appointment. The actual treatment only takes 10 minutes and so we’re out of there at about 4:20. The area they are treating has some overlap with tissues that you really don’t want to get any dose but which do. Close at hand are the left salivary gland and the back of the tongue. As Tim gets to the weekend, his mouth has been getting dry and his ability to discern taste has become troublesome. Many things just don’t taste good since the taste buds are not processing the taste and signaling the brain the way his is used to. Things with salt and/or sour components seem to be the most difficult. So he’s kind of back to some bland foods and cereal. But he is experimenting with foods to see what tastes good and what doesn’t.

In addition he has developed quite a distinct sunburn. Although it’s in an area he doesn’t have any feeling in from the surgery, it looks like it should hurt. He looks like he’s spent a day out in the sun in the middle of summer.

All three of these issues should subside within weeks of the conclusion of radiation which is Tuesday. We are expecting him to be the worst near the end of this coming week since the effects are cumulative and the reaction should peak around then. Hopefully, all of it clears up and we move on.

--bob

Low counts make their appearance

2006-12-10T20:30:00.000-07:00

This last week on Friday Tim had the lowest white blood counts he’s ever had. It was the Friday after Thanksgiving and Tim, Michael and I had planned out the 5 AM shopping schedule so we could get an Xbox 360, some games and a 2 GB SD card. Tim’s appointment to get blood drawn was at 8:30 with the radiation dose to be administered at 8:15. We even were over at CompUSA at 9 PM the previous evening because they started their after Thanksgiving sale on Thanksgiving! A big crowd but getting on line to check out was the key. We did that to get some Xbox accessories, went home and off to bed to get up at 4:15 to make the Friday sales.

We got what was on our lists in only 90 minutes of check out line waiting. Then it was off to breakfast and into the clinic. As we arrived, we remembered we didn’t bring the sour candies so Tim can mask the taste of the saline solution to flush out his port-a-cath. But we had 15 minutes so we stopped in the clinic first instead of radiation to see if they had any sour candy in a drawer. The short story is they accessed the port and drew blood and we then went down to the radiation clinic. It is actually in the basement of the same building. By the time we got back upstairs, the blood counts were done and Tim’s WBC was 1.0 with his neutrophil count at 0.3. These would normally be 4.5-13.0 and 1.9-10.0 for you and me. So this is quite low and in fact the lowest they have ever been.

That meant we needed to avoid crowds (gee, what did we just do?) and watch out for any infection. In the end, Tim made it through those really low counts and the next time blood was drawn, his counts were 4.7 and 3.5; and that’s within the normal range. He sure has a great recovery capability.

--bob

Shifting Protocol

2006-11-12T21:18:00.000-07:00

Tim had his 5th dose of cyclophosphamide this last week. Since he is in radiation therapy as well, the dactinomycin was skipped but he is back on vincristine. So as expected, this time was a double whammy. Since school was out for parent/teacher conferences on Thursday and Friday, Tim’s appointment was scheduled earlier in the day on Thursday at 1:30. The plan was to visit the clinic, get blood drawn, go to radiation, have the discussion with the doctor and then be admitted to the oncology floor. However, no beds were available in the hospital! The alternate plan then became come back on Friday morning and see if we could get through the treatment at the clinic. Of course Thursday’s radiation dose was administered on schedule.

Perhaps because it was Tim’s regular oncologist’s turn for the free weekend, or the protocol changes at this point, but his dose of cyclophosphamide was upped to 2.2 grams per square meter of body surface area from 1.2 g/m^2. This meant going from a dose that had been about 2.1 grams to over 3.9 grams. This is the nasty drug, the one that makes one throw up. So of course Tim did just that within 30 minutes of treatment. However, a new sequence of anti nausea treatment was tried this time. He got a new drug in the same class as Zofran called Aloxi. This one has a very long serum half life and so the 0.25 mg administered is supposed to last 3-4 days. As a comparison, Zofran is taken every 6-8 hours. He also got a motion sickness patch behind the ear. Even with the Aloxi, he threw up so he got a dose of Ativan to calm things down.

The good thing about Aloxi is that is seems to not make Tim have a “funny” feeling in his stomach and it does do a good job in the anti nausea department. Since the initial incident, he’s been fine. I think we might have to adjust the food intake to better align with the chemo administration or maybe have the Aloxi given 60 minutes prior rather than 30 minutes prior.

The other advantage is that he was in the clinic which is a much better place than evenings on the oncology floor in the hospital. In the end, he was able to go home at 9:30 PM so we didn’t even have to stay over night. The bad thing is he has to at least go to the oncology floor since the clinic closes at 5 but this time it was just to give the remaining two doses of mesna and send him home. He seemed to prefer doing things that way. If we can convince the clinic of the same, then he would still just miss school Friday’s every third week but can sleep in his own bed. That really helped because by the time we got home, the urine output had been reduced so he wasn’t getting up every 90 minutes to go to the bathroom. That makes for a poor sleep experience in the hospital when we stay there on Thursday evenings.

The weekend went really well with no nausea attacks and pretty normal set of activities. We even got our hopefully last leaf raking event in. But he’s a tired pup now and will get his 10 hours of sleep in tonight.

Radiation picks up again tomorrow. We’re already 4 sessions in, just 16 to go. Sometimes things seem to move pretty fast, other times when I think we’ll be doing this until June, it seems so far away. And I’m sure there will be more surprises like this last week where flexibility was the key attribute to possess.

--bob

Marching Band Banquet

2006-11-09T18:47:00.000-07:00

The high school marching band season was concluded this week with the annual banquet and awards ceremony. What a great group of … everyone! Staff, volunteers, parents, and of course the students make for such a rewarding experience. It was really special that Tim was able to participate in the early part of his treatment. He missed a few things and wasn’t able to march on the field but he certainly participated where he could. Being his senior year, I hope he was able to demonstrate some leadership for the underclassmen. I think he did. What was also really special was that the band director made a special presentation for Tim acknowledging his effort (Overcoming All Obstacles-Award) while being in treatment. It was really unexpected and quite emotional to hear those words and hear the room applaud for Tim. We will always remember this year (well, duh!) but certainly this part of Tim’s senior experience will be an outstanding memory.

--bob

Radiation Begins

2006-11-09T18:43:00.000-07:00

Yet another new concept is in the learning mode as Tim begins the radiation treatment. The simulation was completed and a treatment plan computed this past week. Tim will get 36 Gy total dosage spread out over 20 equal treatment sessions. This is at the low end of the range previously discussed since Tim continues to receive the cyclophosphamide during this time. In fact, this week radiation started and he will also get the whammy treatment. Perhaps it will only be a double whammy of cyclophosphamide and vincristine this time because of the radiation therapy being coincident. These 20 days are done Monday through Friday with weekends off. The dose is additive and destroys cancer cells of any micro-tumor pieces left in his neck.

The equipment used is essentially a high powered x-ray machine that can deliver 0.6 Gy per minute of x-ray energy (they call it photon emission). The machine is a mini linear accelerator about one meter long that accelerates electrons and shoots them at a tungsten target which converts them to photons. The resulting beam is bent and then sent through a collimator device that is dynamically configured during treatment to focus the beam to the desired shape and location. Tim’s treatment plan involves exposing him from nine different angles and only takes about 10 minutes to actually administer.

Getting him positioned on the table in the same place is really important and so this is why a mask was made and crosshairs placed on the mask. Tim lies on a table and the mask anchors his head to the table. A laser guidance system is used to place the table in three axes and then an x-ray picture is taken. The process is to compare the baseline locating x-ray to one just taken to see if any adjustments need to be made. All these x-ray pictures are taken digitally, so they are immediately available to be viewed on the computer screen. That allows the technician to line up the baseline and the new x-ray and compute the correction factors to move the table. So far, things have been repeatable to 3mm or less. From there the nine doses are delivered.

The machine used is a Varian 21ex. There is a lot of information on their site for the technically interested at http://www.varian.com/. This link has a video you can look at that explains the methods used to administer Tim’s radiation therapy. http://www.varian.com/pinf/res005.html

--bob

First Diagnostic Scans Done!

2006-11-09T18:41:00.000-07:00

We’re through the first set of diagnostic tests to look for any spreading of the tumor and no evidence was found. This was a slightly different session at the hospital because Tim had to go through the “normal” admitting process for this set of CT scans. Since all of the early initial work was completed, we have been fortunate enough to skip all the paperwork to be admitted to the hospital. Even though these tests were outpatient ones, we had to do that again, but we’re old pros at it now anyway. Have your insurance card available because they have to take the 21st copy of it “for the files”. Oh well.

This test was a pair of CT scans of the chest with contrast both oral and injected. Injected contrast is not a feature of these tests that Tim looks forward to. He was, and so were we, nervous about these tests because they were the first taken since treatment started. Was it possible that the treatment had not been working? Could there be tumors developing in the lungs? These were possibilities to be considered. Even though the oncologist told us outright that he expected no disease to show up, there is still that concern. So nerves were at a high level. Tim couldn’t keep the oral contrast medium down.

They mix the solution into a 7-up and he has to drink all 16 oz of it over a 20 minute period. This is after not eating or drinking since the previous night and on a nervous stomach. At least they didn’t make him start over and went ahead with the scans. The other contrast medium has to be introduced through an IV in the arm since the volume is 75 ml introduced over 30 seconds. The port-a-cath can’t handle that rate.

After the scans, the data is pretty much available right away and we were able to leaf through the CT slices in the oncologist’s office. A quick scan showed no issues and so that was a relief. Further review is always done by a radiologist of course, but this was really good news.

In the discussion about the treatment plan, we began to explore the variability of plans. These plans are really created over time by committee and are recommendations. The oncologist more or less looks up the type of cancer and voila, the plan is there. The two plans we talked about are for low and medium risk patients and what goes against logic is that the low risk protocol is more aggressive than the medium one. So we’re going to have a thorough review of the plan to determine if Tim has to go through all 16 cycles or if 12 might be just fine. There are also variations of administration of vincristine and dactinomycin.

The first 4 cycles are the same for all plans, even the clinical trial. So it’s really no problem that we are only now entertaining how to proceed from here. This was really good news that the number of cycles might be reduced while still being aggressive enough to be successful. We’ll have that consultation shortly. For now though, we are through the first diagnostic scans and Tim is doing great with no spreading of the tumor.

--bob

Getting ready for radiation

2006-10-28T09:19:00.000-06:00

This week we started down the path to understanding the radiation treatment coming up. When the tumor was removed it was not yet clear if it was cancerous. In fact, the previous needle biopsy had shown it to be benign so the surgeons really started out the surgery under the pretext that they were dealing with just a tissue growth that could be solid or cystic but not cancerous. Of course when the pathology report came back with the diagnosis, we then knew it to be cancerous. In a known cancerous resection the surgeons would have removed additional tissue around the tumor to make sure that as much as is possible all the cancerous cells were removed. In Tim’s case, the tumor was up against the skull and spinal column so there wasn’t much more tissue they could remove. After talking with the radiation oncologist, I don’t think there would have been much difference in the surgical approach even if they knew the tumor was cancerous.

So at this point the belief is that there are “microscopic” tumor pieces in the area of the surgery. These are the target for the upcoming radiation treatment. The process is quite fascinating as to how the treatment gets set up. The idea is to irradiate the tumor site and surrounding tissue/bone to create the margin that was not done during surgery and to also make sure that no other tissue receives radiation. The team creates a treatment plan that involves creating a 3 dimensional object to be irradiated. This process is called simulation and in addition to deciding on what exactly to irradiate, also produces the plan as to how to go about doing it. The radiation used in this case are x-rays and they will be administered from several (8-10) different angles, intensities, and beam sizes. In the volume to be irradiated, these different beams will become additive and outside of the volume they do not. So essentially in the volume, the full dose gets administered and outside very little. This is of course a computer assisted process, but it also takes a lot of consultation of experts to get right. It’s supposed to take 10 working days to compute.

The total dose will be in the range of 36-50 gray. They have to nail this down based on the continuation of chemo that Tim has chosen. It is likely to be at the lower end. Radiation measurements are weird I have to say. A gray is a measure of absorbed radiation and although related to an amount of energy, it is really energy absorbed per mass of tissue that is absorbing it. If your whole body took 36 gray you would be dead in minutes. But this amount of radiation will be administered over 5 weeks in daily sessions into a small mass. If the same amount of energy to be used for the localized area were administered to the whole body at once it would be a very small number of gray, about 0.15.

The other part of the simulation process is to make a thermoplastic mask so Tim’s head can be precisely positioned each time he goes in for the radiation dose. That was also done this week just prior to the most recent CT scans being done. With his head positioned on the CT table with the mask a new scan was done to assist in the simulation process. This scan will be combined with previous scans of the tumor so that the correct volume can be identified for radiation treatment. The mask making and new scan visit was pretty short, only about 45 minutes.

So now, it’s wait for the plan to be created. In about two weeks the sessions will start and last for about 5 weeks of weekday daily visits. These should take about 20 minutes in and out. Tim might be able to just drive himself over after school depending on schedules.
Next week is the first evaluation scan timeframe (3 months out). New scans will be done to see if any other cancer sites have developed. I think it will primarily be looking at the lungs to see if any cells have set up house there and started to grow. The expectation from the doctor is that nothing will be found but we continue to pray that that is the case.

--bob

A break from vincristine

2006-10-24T12:26:00.000-06:00

I had wanted to write about the effects of vincristine since those side effects had started to be a major topic of discussion. Tim was getting more and more neuropathic. He had already developed tingling and numbness in his fingers and toes. Balance became difficult because the automatic small muscle impulses don’t happen anymore. And he had developed a pain symptom that felt like he was standing on gravel in his bare feet. This was not looking good.

But as has been his course, he has adapted somewhat to the side effects. After a few days of foot pain and some Tylenol, that has subsided. He still has no reflex action but we are told this is normal. And his gait has changed but in subtle ways. He has difficulty running and maintaining balance. But the good news in all this is that he gets a break from vincristine for a few weeks.

Yes, that’s’ right. The protocol has this built in break from weeks 10-12 where no vincristine is administered. So his last hospital stay really was a double whammy rather than a triple whammy. I think it’s good to be off the vincristine because he was getting worse being on it. The last hospital stay was also delayed so that Tim could go to homecoming and he was able to do exactly that. Other than being really tired afterwards and a scrape from running around in the park, he did really well. That took care of Friday and Saturday but then on Monday it was back in the hospital for cyclophosphamide and dactinomycin along with the “other” drugs (anti-nausea, a steroid and mesna). But no vincristine, yeah! He was a pretty tired pup from the weekend and hospital stay and so missed the early part of the school week.

At the end of that week was the marching band competition known locally as D-III. All of the high school marching bands compete at the BSU football stadium at 15 minute intervals. At the end while the judges tally their scores, the BSU marching band performs. It’s quite a show and a highlight of the marching band season. Tim was able to do his thing on the tuba but sitting in the pit as was planned. His school placed 3rd in their group and 3rd for the overall sweepstakes prize. Pretty good stuff and I’m glad he was able to help the band along the way.

Tim has also decided to stay on the cyclophosphamide for the duration (get off the clinical trial) because he is doing very well so far and feels that taking the more aggressive treatment approach is a better choice. The oncologist did say that if the treatment gets to be too much he would be comfortable with reducing the triple whammy sessions. So that decision is past us now.

Next up is the visit with the radiation oncologist to set up the radiation protocol which should start in a few weeks. But what’s really great is that he has no visit to the clinic this week at all and next week is just a round of diagnostic tests. It’s time to do a CT scan of the neck, chest and abdomen and of course get a blood count.

We’re hanging in there and time is moving along of course. We’re about one quarter of the way done already!

--bob

Clinical trial or not... that is the question up next.

2006-09-30T15:58:00.000-06:00

The protocol for Tim’s chemo lasts until June, 2007. The standard protocol has 16 rounds of the triple whammy with other weeks just having vincristine. Around week 13, radiation will also start and last for five weeks. He’ll have to go to the radiation oncology lab each weekday during those five weeks.

Tim was offered entry into a phase three clinical trial for low risk patients. He is actually on the high end of the low risk category. This trial would modify the protocol to eliminate the last 12 triple whammies and replace them with just the administration of dactinomycin. There are also some breaks in administering the dactinomycin. Both protocols have some breaks on the vincristine.

A phase three clinical trial means that they have already decided that the new protocol is likely to become the recommended one for the future. This trial is to build up patient data to compare survival rates with or without the full 16 rounds. Since the cancer Tim has is rare enough, they are only looking for 650 patients in this trial. A normal phase 3 trial would have several thousand patients. However, rhabdomyosarcoma survival rates have been going up over the last 20 years due in large part to the aggressive treatment protocol. Backing down on that protocol is risky business.

Tim has been weighing the risks of staying in the clinical trial or going with the initially recommended protocol. The third of the chemo drugs, cyclophosphamide if given over the full course of treatment will continue to weaken Tim, has the high potential for causing sterility, and has the late term (after treatment is finished) potential for causing leukemia. Seems strange but also makes sense that these chemo drugs could themselves cause a cancer. Of course, the risk of a recurrence of the original rhabdomyosarcoma is the risk that gets reduced by getting the full 16 cycles of triple whammies which include the cyclophosphamide.

Tim had to decide right at the beginning to enter the trial because he could always leave the trial but could not enter after treatment had started. So we did sign up to enter the trial. The experiment to run would be to see how the triple whammies would affect Tim. Would they pound his blood counts to the ground, make him super tired or keep him out of school? It seems now, that we have gotten better at preparing for the triple whammies and for the follow up care at home over the next few days. So, Tim is really leaning towards exiting the trial and going back to the recommended protocol of all 16 rounds of cyclophosphamide. We have one more round to go before that decision needs to be made final.

It is incredibly difficult of course to make such a decision. If the triple whammies were causing long hospital stays and/or extended recovery times, it would be easier to decide to stay in the trial. Tim is improving each time he goes through the major cycles. So that makes me think he will decide to leave the trial and take on the full set of major cycles.

I hope that his body continues to adjust for the better with the continued administration of the chemo drugs. It seems to be going that way. I think exiting the trial will be the choice Tim makes and of course that is a decision that we will fully support.

--bob

What about high school?

2006-09-29T11:06:00.000-06:00

About two weeks ago, we all met with Tim’s teaching staff, counselor and school nurse. This was to recognize Tim as participating as a Section 504 student. This federal law allows some accommodation of his “disability” but doesn’t require the school to provide an individual teaching plan for him. Basically it is to allow some leeway in assignments, class attendance, and test taking so that he can complete his year in high school. I have to say that the teaching staff in this regard is exceptional. The staff took time to meet before school started and worked through a number of ideas. We outlined the kinds of things Tim will face over the next year such as missing every third Friday while being in the hospital. Tim will still have to do the work but perhaps not all the busy work. He may also be allowed to take tests outside of the classroom or at a different time to accommodate the hospital admissions.

So far though, Tim hasn’t had to miss much school. He was already at round 2 of the triple whammy over Labor Day weekend and it just so happens that the Friday he would miss was an in-service day for the staff at school. And Monday of course was a holiday, so he didn’t miss any school. On whammy round 3, he did miss a Friday but had pledged and did in fact get ahead of assignments he knew about so he did not fall behind. Other than, that he hasn’t missed any school due to reduced immune system effects.

He has had to reduce his physical output in marching band. The band practices evenings on Tuesday and Thursday and he has had to miss a Thursday evening because of a hospital admission. He’s also been very tired of course and that means he can’t participate to the physical level he would like. This week he was able to be at both Tuesday and Thursday evening band sessions and at least help out the marching members (he won’t be marching) and play the music from his position in the pit.

Even so, it does take a toll on him to be up what is now late (9:30) for him. He does very well when he can get 10 hours of sleep in a night. The struggle is that he’s at that teenage time when staying up late is the norm and then trying to make it up on the weekend. He really needs to get consistent sleep each day. So we’ll work though the short term marching band schedule and hopefully when that is over this semester, he can get back to a more normal sleep schedule.

Another high school event is homecoming and that is coming up in a few weeks. It is a series of events with the football game on Friday and a dance on Saturday. It would have been the Thursday just prior for the triple whammy but the oncologist was able to slide the time to the following Monday. So Tim will be able to fit in a senior year memory. And he has a date!

So the Monday after homecoming will be the first time Tim will have an extended absence from school of at least two days. We’ll see how it plays out and if he can get ahead of the curve on schoolwork so those two days won’t be a big problem. If he works it like the last triple whammy, he may feel good enough to go in Thursday but we’ll have to see.

--bob

Triple whammies getting better, can it be?

2006-09-28T17:42:00.000-06:00

Oh my gosh! Things have really been moving along and I have not updated much here. I'm going to separate things a little to keep the entries manageable.

Triple whammy round 3 went really well. This time, Tim was able to get appropriately hydrated before going to the clinic and even though it took a long time to get admitted, he was "ready to go" for the chemo administration by 9 PM. Quite an improvement over the last time where he had to wait until 11 PM. We also discussed the concept of checking vitals all night long with the nursing staff and that really helped a lot. The only "interruptions" through the night were related to having to go to the bathroom. As a result, Tim was able to get a lot of rest over night and was discharged around 3 PM the next day.

We also asked Tim to try and limit visitors to the hospital and so we didn't have any. A couple of phone calls from friends which was no effort at all. While in the hospital limiting the need to stay alert really does help and we appreciate everyone considering alternate ways of showing their support. It really really helped Tim make a quick recovery.

Staying overnight in the hospital for me is getting easier as well. It's like camping in the living room. Sleeping bag and a pad on the floor works really well. The cots they have in the hospital are actually quite noisy and so they wake Tim up when I move. We just skip them. This time, Tim even slept through the infusion pump alarm. I cheat a little and silence the alarm, then go find the nurse. The oncology floor was completely filled so that made it a little difficult finding someone, but we got it all sorted out.

We're still trying to figure out just how long to stay on the anti-nausea meds. This time, we skipped one more dose than last time. These meds make Tim's stomach feel funny (as he describes it) but they also mask the need to vomit. So it's a trade-off just like a lot of things. We cut off the anti-nausea on Saturday evening and Tim did real well with that.

However, Tim also gets allergies from time to time and right now, sage is very high. So his nose has been running and come Monday he did have to throw up in the morning but felt OK afterwards. And then Thursday morning again.

So, now we've gained some more experience with the triple whammy (vincristine, cyclophosphamide, and dactinomycin) and perhaps it is getting better. I wouldn't recommend it of course but at least we have a better handle on it and our experience is starting to pay off. It is actually getting better.

Keep the prayers coming, they are clearly working!

--bob

Normal week??

2006-09-11T13:04:00.000-06:00

Well, it's been about a week since the last post where I reported that Tim was really tired. He's recovered a lot since then and has been in for another round of vincristine this last Thursday. Remarkably, his blood counts are looking pretty good. He has also been feeling a lot better this week and has been able to participate in band events in the evenings.

The Boise area has been experiencing poor air quality with several red alerts issued and stage 1 alerts as well. This has impacted after school events and several day's worth were cancelled. However, we were able to go see Tim and the marching band perform their opening at last Friday's football game halftime. It was well done. Tim doesn't march on the field but plays a tuba sitting in the pit. From where we were in the stands, it sounded really sweet and between Tim and the two marching tubas, that part of the score had an expanded presence. It was really nice to see how the school, and in particular the band instructor have been able to accommodate Tim. He continues to remain enthusiastic and positively focused on school activities.

This week we will meet with the school counselor to discuss classifying Tim as a 504 student. This will recognize his reduced capacity for this year and allow the school to make reasonable accommodations for him. He'll still take the full course load but may not have to complete all the busy work assigned. Perhaps just demonstrate that he knows the material to move on. We'll get more details this Wednesday.

More and different side effects showed up this past week. He has some acne developing (a recognized side effect) but this seems to already be under control with topical over the counter treatment. His voice continues to sound hoarse, the finger tips and toes are tingly and numb, and from time to time balance seems to be an issue.

This coming weekend, Tim and I will take a trip to see his brother at U of I in Moscow, ID. Tim should be on the recovery by then. Blood counts and in particular his white cell counts are supposed to rebound this week. In fact they are supposed to be at their low point right around now. But he got a good report last Thursday and no indication that more tests needed to be done early this week.

Maybe we have some silver lining showing through and his bone marrow is pretty good at taking the hit each time from the chemo.

Could this have been a (new) normal week?

Warp drive off-line... impulse power only

2006-09-04T21:05:00.000-06:00

Here we are at the end of the long weekend and it's been a balance of being really tired but wanting to do lots of things. Tim is feeling the effect of the chemo now more deeply than before. He has been very very tired all weekend. Luckily it was a four day weekend so he's had an extra day to recover somewhat before school starts up again on Tuesday.

We were able to take in the women's soccer match on Sunday morning after church. A friend of ours with many connections through school, soccer and music was in town for a tournament. It was fun to watch her and her team play and to do really well even if it was against the Idaho Vandals. She is an extraordinary player and started and played all 90 minutes as a freshman. Tim did OK being able to sit in some umbrella shade. It was a lot of fun to be there.

The stomach came back to normal very quickly and by Sunday morning, Tim decided not to take the last dose of Zofran (anti-nausea). He did fine with that and has been eating well although in smaller portions. He also states that his taste is different now and another curious effect is that he has an enhanced sense of smell for iodine of all things. His voice has also changed, he has what sounds like a sore throat but claims it does not hurt. Perhaps some other side effect. And the tingling that was in his toes is now also in his finger tips.

So now, tired is the name of the game. This is likely the last weekend where the energy can be used for non productive things like "hanging out" and playing xbox. When some effort can be applied it will have to be applied to school work to make sure Tim doesn't fall too far behind. As parents know, this is tricky business even without the added issues around chemo treatment. The discipline will have to built up to get the schoolwork done first and then be able to move on from there.

Some things have already been eliminated well before the energy level dropped. Tim was supposed to be the tuba section leader in marching band but is now not going to carry a tuba around on the field. He'll likely play sitting in a chair to lend the musical part without the march. There aren't many tubas in this marching band anyway - now there are only two who will march. He had a pretty busy school schedule that would have required "zero" hour. Come in one period before everyone else for an additional course. We were able to get that dropped, it wasn't needed to graduate.

Also, soccer in the spring just won't be possible. With the port-a-cath device in his chest, he would not be able to take a direct hit to the spot either by the ball or a player without causing injury. He'll see how else he can support the team by being at games. This team he was going to be on was with a number of players he has played with for many years. At U17, many players drop out and this would have been his last year anyway. So he'll just have to move on to playing soccer for fun in college.

So it'll likely be a long time before we can get back into warp drive, for the moment it'll be impulse power only.

--bob

Triple whammy round two

2006-09-02T21:13:00.000-06:00

In a nutshell this visit to the hospital went really well. Tim was quickly back on his feet and without the nausea that accompanied the week one chemo. So perhaps that really was due to the spinal tap and his reaction to that.

The learning from this time was to make sure to drink lots of fluids before being admitted. Tim had to wait until about 9:30 PM for the chemo dose to be delivered because he was not hydrated enough. And then as a result of a low blood pressure reading, he was on the list to have vitals checked every hour throughout the night. That made for not a whole lot of sleep for either me or Tim.

Blood counts were all pretty good. Platelets really rebounded, red cells were on the low end and the white cell mix was not normal but there were enough. The thought is that red cells will continue to be depressed as time goes on so there will likely be a gradual decline in energy level. Two days later for instance, Tim is really feeling the effect and is very tired and it is getting more difficult to simply walk a distance without his cardio system acting like he just ran a mile. We'll have to see how that continues to change over time.

He's also starting to feel more of the mid term effects fo the chemo drugs. His toes are now tingly from the vincristine and he has some balance problems also from the vincristine. Some good news also came last week in that the second opinion of the tumor pathology confirms the embyonal form rather than the alveolar form of the tumor. That would allow him to stay in the clinical trail that would end the triple whammy visits after four rounds. However, Tim is thinking that he's doing pretty good after this round and so is inclined to stay on the agressive chemo for the duration. He'll have to make that decision in the next 6 weeks so he'll have another triple whammy round to go through before that comes up.

He was able to go to a local soccer tournament to watch a game and met up with a bunch of people, distribute some more wrist bands and generally have a good time. It was exhausting but a good time to be outdoors. We'll see if the college women's game tomorrow can be attended or if it's just too much to deal with.

Zofran seems to be doing the trick for the nausea this time, but curiously he has some pretty whicked hiccups going on. This could be another side effect. They seem to last about an hour but then come back an hour or so later. We'll have to monitor any of these curious effects and see if they are just coincidence or if they really are caused by the treatment.

So, all in all a much better hospital admission.

--bob

Support for lost hair

2006-09-02T09:19:00.000-06:00

As was somewhat expected, Tim began to lose his hair about 2 weeks after the first round of chemo. All three meds indicate hair loss as a potentail side effect but I think it's pretty much 100% certain with the three drug combo. Anyway, Tim was losing it not in clumps but many many strands when running fingers through his hair. So it was time to shave it off.

New territory of course so we decided to buzz it really short so as not to get the remaining hair stuck under the scalp. Over the next few days most of those little stubbies fell out. But the surprise was that some new hair grew in its place. Not a lot though and the new hair is very light in color. This probably won't stay very long since the week 4 treatment will likely cause those new hairs to fall out.

Tim's cousin felt the need as did myself to get the close buzz cut. The picture on the right is Tim and myself after my haircut. The picture on the left is Tim's cousin John with his new "do". He also sports the wrist band he had made in support of Tim. It's really cool and a number of them have made it out to friends.

Chemo meds are nasty stuff

2006-09-02T08:31:00.000-06:00

The protocol Tim is on includes three chemo meds, vincristine, dactinomycin, and cyclophosphamide. These drugs have been around for many years and been used to treat various cancers. By far the nastiest is cyclophosphamide however, he only gets this every three weeks. This is why he has to be admitted to the hospital for at least 24 hours. This drug has the short term effects of causing nausea and bladder lining erosion so lots of IV fluids are administered both before and after administration of the drug. They also administer some counter-agents for nausea and mesna to counter the bladder issues. Cyclophosphamide is an alkylating agent and gets converted into a pair of chemicals by the liver that interfere with the division of cancer cells. Of course it also does the same for normal cells.

Dactinomycin is an anti-tumor antibiotic that Tim also gets once every three weeks. This one also interferes with cancer cell DNA in a different way. Tim hasn't had this one without the other two yet (later stages of the protocol do this), so we're not quite sure of it's individual side effects.

The last one, vincristine Tim gets every week. It is such a small amount and doesn't have short term effects so it is administered in the office. It still requires an access in the port-a-cath but only takes a short "push" of the med (only 2.5cc). This one has some medium term side effects that Tim has experienced. Jaw pain and tingling toes are the ones he has had. And this one also affects the small intestine lining so one has to be on the lookout for changes in regularity.

There is also a med administered to enhance the body's uptake of the drugs. Dexamethasone is used for this. It is a steroid similar to that produced by adrenal glands. Tim gets this every 12 hours along with the anti-nausea med while he's in the hospital.

Since the body gets beat up each time chemo is administered, there is also a regimen of antibiotics to counter the potential for pneumonia, pepcid to keep the stomach happier, senecot for regularity, and salt and baking soda mix for potential mouth sores. Fast growing cells of course are being attacked by the chemo meds and these counter measures are to head some of that off.

--bob

Cards, Letters, Thoughts, Prayers

2006-08-31T12:06:00.000-06:00

We have received so much e-mail, been in so many discussions, and have had so many cards and letters it really deserves a few comments and thanks. So thank you all very much. It is really such a joy to find out how many people one has touched throughout their lives. All of you have been so generous with offers of meals, taking on workload, providing transportation, being an ear for concerns... my list could go on for a long time.

The mantle above the fireplace is loaded with cards and folders in e-mail have many letters in them. One also finds out about others who have had impacts from loved ones with cancer.

Tim really appreciates all the communication and goes back to look at them from time to time. They really do make a big difference.

Thanks again!!!

--bob

Week One of Treatment

2006-08-28T12:19:00.000-06:00

This really comes in two parts. Part one is getting some more diagnostics done and the insertion of the port-a-cath while part two was the administration of the first round of chemotherapy.

On Tuesday, Tim had a series of CT scans, a bone scan, a spinal tap, and a bone marrow aspirate taken. All of this to look for any possibility of spreading of the tumor cells. The short story is all of this turned out negative. The bad side is that Tim reacts poorly to spinal taps. The previous spinal tap which was used to conduct the myelogram to look at the syrinx caused him to not be able to keep any food down for a week. In the previous case, he had a conflict of instructions to lay down but keep the head elevated so as not to let the contrast medium get to the brain. He lost some spinal fluid out the hole. This makes one dehydrated and he wasn't able to do much about it. He couldn't get fluids into his system. In the week one case, he felt a lot better the day after all the tests but in retrospect, he should have stayed on his back and let the hole heal over. He started to feel nauseous and then threw up Wednesday evening through the following day of his admission to the hospital for chemo.

The bone scan involves injecting a gamma ray emitter that finds it way into the bones so that under a radiation scanner the bones literally light up. After several minutes integrating the emissions, the machine paints an image of the skeleton. They look for really bright spots which would indicate rapid bio processes which would imply cancer cells. None were found.

The CT scans are looking for high activity and a contrast medium is used. Again, none were found. They are looking for cells in the spinal fluid and bone marrow and no cancer cells were found there.

The port-a-cath also got inserted. This device provides a direct line into the jugular vein which then can be accessed via a needle poke through the skin and into the device. It is located on the upper chest and avoids having to establish IV lines each time drugs need to be administered. There is also a cream that gets applied about an hour before use that numbs the area so he doesn't even really feel the needle poke. The only bad thing is that they have to flush the system out and use heparin and saline to do that which causes a metallic taste in the mouth.

So on to part two. He got admitted on Thursday for chemo and also to make him comfortable by getting fluids pumped in and getting anti-nausea drugs.

This helped a lot and he was able to eat some while in the hospital. But, when we got home Friday night, he was back to being nauseous and essentially wasn't able to eat or drink anything for the weekend. This was pretty bleak and initially we could not really tell if the nausea was from the spinal tap or the chemo. In the end we think it was the spinal tap and so we'll wait for the next chemo admission to see what happens.

The protocol he is on includes three chemo drugs administered on weeks 1, 4, 7, and 10 with one of those drugs administered on weeks 2, 3, 5, 6, 8, and 9. This pattern then changes on week 11 if he stays in the clinical trial. One of the two additional drugs adminsitered every three weeks is the nasty one and the subject of the clinical trail. Not being on the trail, this drug continues to be administered every three weeks. We'll have to see his reaction and go from there.

The reason for the hospital admission is also to allow the introduction of massive amounts of fluid to keep the one nasty chemo drug from affecting the bladder lining. As a result, Tim has to get up every 90 minutes or so to pee and that has to be measured and tested each time. They end up looking for blood in the urine and finding none after 24 hours or so, they let him come home.

Anti-nausea drugs are still needed at this point and the ones they use now-a-days are really a seratonin blocker. The stomach says throw up, but the brain doesn't get the signal. There are a number of them and like meds for migraines one has to find the right one that works for the individual. Because we were dealing with the spinal tap issues, we're not sure at this point what drug works or not. Again, we'll find out on week 4.

--bob

The syrinx diagnosis

2006-08-23T11:58:00.000-06:00

As I pointed out earlier, in the diagnostic work associated with the tissue mass, a syrinx was discovered in the spinal cord. This was the reason for the involvement of the neurosurgeon. He ordered a series of additional MRI scans to determine the depth of the syrinx and look for one of the possible causes. The initial thought was that a chiari malformation was in play. This is a narrowing of the hole in the base of the skull by the tonsils of the cerebellum. Results of those tests showed no malformation or at least not one that qualifies. Medicine is sometimes tricky stuff and although Tim's cerebellum was in this opening it wasn't extended far enough to qualify. On the other hand, they were clearly in that hole at the base of the skull but not really a causal candidate for the syrinx.

We were told the syrinx is not a normal element of the spinal cord. It is essentially a water column in the middle of the spinal cord made up of cerebral spinal fluid. This stuff "flows" in and around the brain and spinal column and when restricted can cause the syrinx to appear. Patients usually have some symptoms associated with a syrinx but Tim had none and continues to have none.

There was one more possibility for restricted flow and that could be some issue in the spinal column. To test this, Tim had a myleogram which is to inject a contrast medium into the lower spine and watch how it flows on a flouroscope. This test also showed no cause for the syrinx. So we were left with no answer other than to check again in a year and see if the syrinx changes size. In the meantime since Tim has no symptoms and he has a "lot of room" in the spinal column for a spinal cord that is "fatter" than normal, we'll end up waiting until next summer to check the status of the syrinx again.

Good news for this part of the journey.

If something changes, then we'll have another decision about a surgical proceedure (exploratory) to look for potential restrictions near the base of the skull that can only be seen this way. MRI scans as good as they are can't completely substitute for visual inspection.

--bob

What the heck happened?

2006-08-22T22:48:00.000-06:00

Or, I guess the beginning of all this...

Back in May, 2006 someone in the classroom noticed a "bulge" on the left side of the back of Tim's neck. Seemed kind of odd. It was the middle of the spring soccer season so perhaps this was a muscle bruise of some sort. But he could not remember getting injured. Nothing else seemed out of place, no stiffness in the area, it wasn't hot, just a bulge.

A trip to the family medicine doc was in order but he was clueless. He prescribed a round of antibiotics on the premise that this could be a deep infection. After two weeks there was really no change. Next we were off to an ENT specialist in the group who wanted to get a CT scan of the neck done to see what we were dealing with. Results clearly showed a mass that looked like it was cystic in nature. That is, likely fluid filled. It was in-between the muscle layers of the neck and quite deep up against the skull. As part of the CT scan, a syrinx was discovered (the subject of another blog entry) in the spinal cord. That got a pediatric neurosurgeon in the mix who then got a different ENT surgeon involved.

After more scans (MRI scans since neurosurgeons like those rather than CT scans) the syrinx was clearly there and we proceeded down a path to understand the cause of that. The tissue growth which was now being called a tumor was referred to the second ENT to deal with. The next step was to do a needle biopsy and see what we were dealing with. Unfortunately since the thought was that the tumor was quite vascular the aspirate didn't really end up getting cells of the tumor. Rather it was just blood and some skin tissue. Anyway, that showed no malignancy.

Even so, the tumor had to come out. We couldn't really tell if it had been growing recently or had been there for a long time. Surgery was scheduled for a Monday morning and would involve both the ENT surgeon and neurosugeon since the tumor was quite close to the skull and spinal column.

The tumor was resected, photographed, made into slides but no quick diagnosis could be made by the pathologist. The slide set had to go to some experts and it took about two weeks for the data to come back as embryonal rhabdomyosarcoma. In the meantime, the ENT surgeon had contacted the pediatric oncologist at the MSTI in Boise and when the diagnosis of cancer came back it was one day later that we were in the oncologist's office and talking about chemotherapy and radiation treatment.

Oncologists are a funny lot. They are blunt and they have to be. Cancer is really no joke and to get the point across it was clearly stated that you will die from this if no treatment is done. However, the treatment prognosis is good and a lot depends on how the tumor is staged. A treatment plan was set up to begin the following week and that week would include more tests and the insertion of a under the skin access port for all the meds.

--bob

Getting Started

2006-08-22T14:43:00.000-06:00

Starting a blog seemed like a good way to share how things were going with Tim and his journey through dealing with a cancerous tumor. We're well on the way into treatment already, a lot of the emotional intensity has already passed and many people I know are wondering what the heck is really going on.

I know at work, folks are anxious for information but want to not bother me so much. I'd like to be a lot more open and sharing but also not to spend a lot of the day telling the same story. Don't want to cheat anybody out of the information either so publishing a blog might actually achieve a lot of that.

My intent is to publish whatever makes sense and keep the conversation open. Hopefully we can all be supportive through this time, provide information, make suggestions, etc. In the end this combined with the other "technical" notes will become a record of the memory of this year.

--bob