Snuggie time
4 1/2 tablets of Dexamethasone (steroid) a day (morning and night)
1/2 tablespoon of Nystatin 3x day
1 teaspoon Bactrim Mondays and Tuesdays
Zofran (antinausea) when needed
We are also keeping up with nebralizer treatments and all asthma meds
We began Delayed Intensification on January 3rd. Right on schedule! That is a big deal in "chemo time". This phase consists of Monday clinic visits. Any need for a blood transfusion indicated on Mondays will be taken care of that day. I no longer have the luxury of taking care of them early Tuesday mornings bc I am back at work. That makes for a LOOOOONG Monday if a tranfusion is on the checklist.
The first 29 days of DI (during a weekly visit) require the following to be administered:
Vincristine push through his port (a familiar drug to us)
Doxorubicin (bright red IV drug through his port)
1x = Initial start of phase was a Intrathecal Methotrexate (spinal tap and push of drug, VERY familiar drug to us-remember our last phase of 24 hours straight of this stuff?!)
1x = PEG injection in his thigh muscle
He is on the steroid for 7.5 days (every other week)
So far in this first half (Jan 3-9) we have seen a happy boy! Playful and HUNGRY. I knew the steroids kicked in as soon as he asked for Ranch dressing with his corn dog. Just like last time. Food choices include: hot dogs, corn dogs, bologna, alfredo-sauced noodles, buttered ravioli, plain bread w lots of butter. He has lost his taste for sweets. No obsession w M&Ms this past week. And we cant seem to pour the mild fast enough!
He has been in a really good mood and I am grateful for that. He is really loving up on Caden this week. Very concerned about him. The steroids have made him a crabapple in the past with unpredictable mood swings (try tracking that w the regular two yr old antics alongside it). But so far he gets really crabby fast and is clearly tired. He has crawled up on the couch and taken a nap each day since I returned to work (last Tuesday, Jan 4). And over this weekend we took family naps to care for his tired needs. So as long as we watch for those nap signs and help him give into them he remains a happy camper. I cannot complain. I love seeing him active!!!
The second half of the phase consists of (Beginning day 29-most likely first week of February):
Day 29 and 36-Intrathecal methotrexate (spinal tap and push)
2x-Vincristine (push)
1x-PEG injection
Day 29-One really LOOONG day of Cytoxicin (that drug that only takes 30 min to administer thru IV put all day to monitor his urine output. That is the kinda day spent in the Day Room at Clinic. We usually dont leave until after 4 pm)
2 periods (4 days straight) of our fav (insert sarcasm here ) Cytarabine (AraC)-the type of drug in which he is sent home with his port in access for me to push thru his port at home right before bedtime. It is no biggie to administer it's just having his "tubies" hanging out and needle inserted for days straight when he is such an active boy. Nervewracking. Can't tell you how many times I tell that boy to stop jumping on the couch!!
TG / Thioguanine-for 14 days straight (a new drug to us) . It is an oral chemo drug that interferes w cancerous cell growth. However while doing that it releases toxicity (the killing of those cells)- uric acid, potassium and phosphorous levels affecting kidney and liver function. It also decreases appetite. So we may see a drop in that surge we enjoy seeing while he is on the steroids.
No steroids during the second half of this phase.
And of course we continue his Nystatin (mouth sore prevention n treatment) and all asthma meds
So, there's a sum of what we are up agains the next two months. Help us pray for minimal to no bumps in the road. I don't mind transfusions bc they keep that bone marrow healthier but anything else is not invited on this trip!!!
Let you know how tomorrow's chemo treatment goes soon!
