Radiation Done!

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

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

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!

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

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

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

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

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!

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

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

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.

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?

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?

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??

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

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

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

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

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

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

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

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?

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

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