Four month scans looking good and Serving Up Wishes

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?

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

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

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

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

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

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!

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!

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

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!

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!

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

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

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

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

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

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

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

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!

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