A Hard Day but Moving Forward

During Chase’s appointment for the ANP treatment today, we discovered that the IV pump has been malfunctioning (as I suspected yesterday, in reviewing the prior days output, but was shrugged off by the tech). The output cycle today confirmed that only about ½ the dosage programmed was administered for the prior two days. This was pretty frustrating, since our whole objective right now is to slowly but surely ratchet up the doses each day until he achieves the max target level, which is what is really needed to attack the tumor. We swapped out the pump and reprogrammed a new unit for another slight increase in dosage and we’re hoping that Chase doesn’t have an adverse reaction, since he really hasn’t had the dose that we had planned over the past couple of days. This will really mean a significant increase over the last actual dosage administered and what we’ve been trying to avoid with the slow daily increases. On the positive side, if he doesn’t have an adverse reaction, things are looking pretty good for him to continue with the daily increases. He started last Wed at 10 ml per dose and 6 doses per day. At an increase of 10 ml per dose per day, he’s now expected to be at 70 ml per dose and a total of 420 for the day (although he really only had 150 yesterday). We’re praying that his system accepts this dosage today, so he can get back on track with 80 X 6 tomorrow and so on until he’s at around 250 – 300 ml per dose or 1500-1800 for the day.

The hardest part of the day was parting ways after the appointment for the next few days. I have to take Barbara back home to start school tomorrow and Carol stays back with Chase to continue the treatments. We’ll get back together on Fri evening for the weekend and will probably do the same thing again next week (this time for the full week). It was probably the most difficult juncture since the beginning of this challenging ride, since we’ve all been in this side by side every step of the way and we’re getting to a very important part of the treatment when the doses will be getting to pretty high levels that often cause short-term side effects that could slow down the progress. Hopefully that won’t be the case with our little Trooper and he’ll continue to make us proud. He was sad to say goodbye to Dad and his sister, but understands that he needs to keep getting his treatments so he can get better and hopefully get to school himself pretty soon.

Chase did great on his tumor fighting regimen today – he ate some cherry tomatoes this morning ($2 worth) and then ate a concoction of plain organic, low-fat yogurt with a few tablespoons of flax seeds, a tablespoon of flax oil and a ½ quart of blueberries. You can imagine what that tasted like (I tried it just to know what I was putting him through and to show him how good it was) – believe it or not, he didn’t even flinch when he realized that each spoon was worth $0.10. He at 20 of them and gladly took another $2 (this even surprised Carol who after seeing the breakfast bowl looked at me and said, “Good Luck”). I was pretty pleased because this was really high on our Nutritionist’s list of recommendations and checked several boxes for the day already. He left the last bite for me as 20 was all he could bring himself to swallow, so I took it with a smile (“yum”) – he smiled back and grabbed the two bucks to put it in his new wallet from the Aquarium, which he’s really proud of.

It seems every day he shows up at the clinic with something he’s excited about (like his new backpack, space ship drinking bottle, etc.); however, today he seemed kind of “down-and-out.” Perhaps realizing that right after the appointment we were heading in different directions, or just one of those days (we’re all aloud to have ‘em). Anyhow, with the support of his angels and this prayer network, he’ll get through the full 6 doses today and wake up tomorrow happy and excited about another day. The one side effect that is to be expected with this kind of increased volume of liquid intake is frequent urination (sometimes more than hourly) – so far he’s keeping up, but what a challenge to realize 2-3 times in the night that he has to get up, take his backpack and head to the bathroom. At some point, we might have to revert back to pull-ups as a trade-off to letting him get better sleep, but until then he’s been up for the challenge – just another thing we’re proud of him for (at least for this one he hasn’t asked for money, other than his standard quarter that he was getting before this adventure– maybe that’s how all this negotiating got started). Oh well, we’ll figure out how to undo that conditioned response after he over this challenge; until then, the motivation is a good tool.

Thanks again for all the prayers and support!

Love,
John & Carol
Chase & Barbara