Wednesday, May 08, 2013

Delayed Intensification Part 1

I can't believe we're almost done with the "intense" and "complicated" treatment! By almost, I mean we have another few months left, but the worst is behind us (as far as I can tell). Then we move into the very long Maintenance process (24 months long, assuming there's no hospitalizations and relapses).

Molly finished off the previous phase with no hang-ups. She was able to get through all the increased doses of methotrexate just fine without any mouth sores.

This is what we do at clinic check-in. Weight, height, and blood pressure.
We are now almost to the half-way mark in the Delayed Intensification phase. The doctors tell us that this is the hardest phase for most children, next to the very first phase (remission induction) of course. We had 7 days on steroids, then 7 days off, then 7 days on again. That finished yesterday, and I am so looking forward to my Molly being happy again.The last time she was on steroids she got very chubby, very irritable, and craved tomato products (ketchup, spaghetti sauce, etc). This time around she didn't get as chubby, but she did get very irritable again and her craving is cheese products. All that cheese has made her poop soft like peanut butter, and she can't hold it in as well, so there's been quite a lot of frustration as far as that goes.

Day 1 of this phase was a clinic visit. Molly had a lumbar puncture for methotrexate, and also vincristine and doxorubicin (a new chemo drug for her) into her port. That visit went very well, but it was an afternoon RTU appointment which meant that Molly had to go all morning without food and that made her very upset.

Molly in the RTU recovery room after waking up from the anesthesia for her lumbar puncture.
Day 3 I was in Vegas for a bagpipe competition, so Daddy got to take Molly in for an hour-long chemo infusion (pegaspargase) into her port. I hear that went well... they ate some hospital food and watched a movie while they were there.

Day 8 & 15 were clinic visits. They were both quick visits with just vincristine and doxorubicin into her port. Her labs are coming back with good results every time we get them taken, so we're rather happy about that.

This was taken in the infusion room where they push her chemo into her port.
We have an RTU appointment for Day 29 (May 15th) and then no clinic visits until Day 1 of the next phase, which is 29 days out again. This clinic visit coming up on the 15th is a count-dependent visit, which means that they have to take labs the day before and if her ANC count is too low then they will delay the visit a few days or until her counts come back up. Molly was a little pale yesterday (the nurses told me to expect that) but today she's got a little more color so if I had to guess, I would say her counts are improving and we'll be able to have the next appointment on the day we expect it.

The oncologist keeps telling me that Molly is likely to be hospitalized for a fever or some other illness sometime before the end of this phase. I hope that is not the case, but I am prepared for it. I have a list of things I need for her hospital stays, which I'll share here in a second.

Molly's losing her hair again! She's got a small bald spot on the top of her head, and a big bald spot on the back where her head rubs against her pillow while sleeping. I'm not sure how much she'll lose this time... we'll just have to wait and see.

Molly's getting so independant! She got herself a bowl, poured herself some cereal, and brought the bowl and milk to me so I could pour the milk.

Hospital 2< days overnight bag

Pink blankie and Frog blankie
Tiger stuffed animal
Owl Light and charger
Change of clothes
Extra underwear, socks
DVDs in travel case
iPod and charger
Water cup
Diffuser & Oils
Changes of clothes, socks
Scarf and hat
Laundry Detergent
Feminine Hygiene products
Toothbrush and floss
Face wipes
Un-petroleum Jelly
Comb, hair ties, and mirror
Hand lotion
Hand Sanitizer
Nail clippers and polish
Phone and charger
Laptop and USB drives
Notebook and pen
Camera and batteries
Crochet/Knit project
Reading Material
Water cup with straw
Reusable shopping bags
Cash for vending machines


Please comment if you have anything to say or if you have any additional questions about the post above you would like answered