Scott & Sunny

Scott & Sunny

Tuesday, October 23, 2007

Some hockey and The Cycle

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.

5 comments:

Sandie said...

In many respects, you can look at Scott's situation and think that he got dealt a lousy hand. I think about what outstanding parents you and Stephanie are and how well you are holding up under such adversity and think, Scott is truly lucky. You all are to have each other.

Love to you all
xoxoxo
S.

Laura said...

It is hard to comprehend what you all must go through on a daily basis. That schedule is intimidating and overwhelming to say the least. Scott is such a trooper to be handling things week after week with such strength and determination. And you and Stephanie are doing amazingly well doing what needs to be done to get through all this. Having each other clearly gives you a powerful strength. Know also, you have your friends behind you constantly sending prayers and good thoughts. You are all amazing.
Sending Smiles, Angel Laura

Colbys Mom said...

Well put Dad. It is strange seeing it written out in black and white what our kids go through. Colby and Scott are on the same protocol ( in case you don't remember me from the LLS boards =) ) I also find it hard to answer the "how is he doing" question and after seeing your post it is a little more clear to me why it is so hard to answer. You broke it down very well.
I was just checking in on Scott.
~ Hugs and Prayers

nina said...

I echo what Sandie said. You both are doing such a remarkable job with Scott.
I don't know if I would be able to hold it together as well if given the same situation.
My prayers are with all of you.

christine said...

All I can say is 'keep at it' - it really is a frightening schedule of drugs that you'd think the body could not take. And for a mum to have to be hard and forceful to administer these things to her own child is heartbreaking.

We all just have to look to the end of the treatment protocol and trust that in the end Scott will be fit and well and back to his former self.

love and hugs as always
Mum/nana