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