Last Saturday saw a mad rush to get in Derry's hockey game (start time 6:15) and the Lightning game (start time 7:30). The Lightning won. The Ghost Riders did not, falling 6-4 in a close, hard-fought game. We have to thank Jonny Murray (NHL Linesman #95 if you're watching a game) for the tickets to the Lightning game on Saturday. Great seats on the side in the lower level, and we got to see Jonny after the game, where he gave the boys pucks and got a bit sentimental with Scott. We also got to see ex-Lightning player Eric Perrin, as he was traded to Atlanta (whom the Bolts played Saturday). More thanks go out to Kacey Dowd, as she'd left passes for us to get up to Brad's suite during the game, where she informed us of the upcoming kickoff for the Brad Richards Foundation. We'll post more on that when all the information is public.
Now on to "Scott" topics.
Sometimes folks ask “Is Scott done with his chemo now?” That is a hard question to answer when asked by someone not privy to all the gory details involved with a leukemia treatment protocol. Yes, he has completed all the dosages of certain drugs and treatments (Doxorubicin, High-dose Methotrexate, radiation and Luvenox). But Scott will be “done with chemo” (if all things stay on schedule) sometime in March 2009. Just to give a bit of insight to what he (and we) deals with, I decided to give a summary rundown of how his cycle works. And this cycle is the “maintenance” portion of his protocol, which will be the case from now until Week 108 (this coming Thursday will be Week 38). I think I have things mostly accurate and have included everything, Stephanie will correct me if not.
Keep in mind the following:
Steroids need to be taken with at least some food in his stomach.
Bactrim should be taken with some food as well.
6mp (which is a chemo drug) must be taken at least an hour prior, or 90 minutes after eating.
Pepcid is taken when needed. As are Tums. As is Benadryl to help sleep. As is Ativan when necessary at home. And Tylenol w/Codeine.
The IV drugs in clinic tend to be pretty good at causing nausea and vomiting, even with premedication to prevent such.
All of the above makes some of the drug days a juggling act which Stephanie carries out with sheer will. At times she must be much colder and forceful than a mum should ever be required with a child on a cancer treatment protocol. Poor Scott basically only wants her and the clinic nurses to administer his drugs now. He’s not comfortable with me doing them.
The “cycle”, as we have come to call it, is 21 days (starting on Thursday) and as follows (today we are on Day 6 of the current cycle):
Day 1 – Clinic visit – Finger prick. Port accessed if counts above 750. Premedicated with Ativan, IV Vincristine and IV Methotrexate. Steroids start for 5 days, 3 doses totaling 150mg/day. 6mp starts for 14 days, given in the evening.
Day 2 – Steroids 3 times, 6 mp
Day 3 – Steroids 3 times, 6 mp, Bactrim twice daily. Steroid-induced, ravenous eating usually begins. Jaw pain tends to begin as a Vincristine side effect.
Day 4 - Steroids 3 times, 6 mp, Bactrim twice. Pain usually starts in back as well. Stomach aches start coming, as his stomach starts to be stretched by all the food he is cramming in. This weekend in the cycle is usually rough, as Scott tends to start the emotional effects of steroids as well.
Day 5 – Steroids 3 times, 6 mp, Bactrim twice. Pain tends to leave jaw, remains in back.
Day 6 – 6 mp. Pain in legs and feet, and sometimes back.
Day 7 – 6 mp, Pain in feet and legs.
Day 8 – Clinic visit – Finger prick. Port accessed if counts above 750. Premedicated with Ativan, IV Methotrexate, 6mp. Massive food cravings usually begin to wane about this time. Feet still hurt.
Day 9 – 6mp. If we’re lucky, foot pain starts to ease.
Day 10 – 6mp. Food craving mostly gone, but stomach is stretched and large amounts of stomach acid are still produced because he is now used to eating 4 times what a normal person does. This typically results in nausea and puking each morning for a few days.
Day 11 – 6mp. This weekend, while usually the weekend with his highest counts, is most times inhibited by lingering Vincristine pain and the erratic nausea from stomach acid.
Day 12 – 6mp
Day 13 – 6mp
Day 14 – 6mp
Day 15 – Clinic day. Finger prick. Ports accessed if counts over 750. Premedicated with IV Ativan, IV Methotrexate. This is when Scott’s ANC is at its nadir. Counts usually very low at this point, and he’s missed an IV Methotrexate due to an ANC below 750.
Day 16 – No scheduled drugs. Scott usually feels his best about this time in the cycle. Sadly, it comes at the time of his lowest ANC during the cycle, which makes preventing exposure to bugs, germs, crowds, etc most important at this time. This tends to have us forego crowds over the following week. So he feels best, but is limited to where he can go.
Day 17 – Bactrim
Day 18 – Bactrim
Day 19 – Bactrim
Day 20 – No scheduled drugs
Day 21 – No scheduled drugs
So there you have it. That is the “routine” for the next 18 months or so. Just some insight as to what he faces every 3 weeks. Maybe that will explain to folks why we sort of hesitate when someone also asks “How is Scott doing?”. That’s a very hard, relative answer.