Jun 19, 2016 10:38pm (Sara)
Delayed Intensification is the 4th phase of this crazy journey and it includes the 5th and 6th months of treatment. 8 weeks. We’ve been dreading this phase since the end of induction. It’s intimidating because, one: the treatment is gnarly and looks similar to induction, and two: the terrifying nickname is “the Red Devil”. It gets its nickname because the Doxo chemo is so red. Not quite as deep as packed red blood cells…more like an artificial red flavored beverage. I mean…why do they have to call it the “red devil”. Why not Koolaid Kicker? Watermelon Weary? Scarlet Sucker Punch?
The next 4 weeks of treatment looks as follows: we started with making counts. As Scotty mentioned before, her blood recovery was great so we moved forward. DI started with a lumbar puncture with intrathecal (infusion into the spinal fluid) methotrexate. This is still prophylactic to make sure the leukemic cells don’t come back in her central nervous system. Reminder – meds and chemo given systemically (in the blood) do not travel to the central nervous system well. She then got IV vincristine and the new “red devil” Doxorubicin. She also started Decadron (steroids) again. She will have 3 weekly infusions of the vincristine and 3 weekly infusions of Doxo. She will THANKFULLY only take the decadron for 7 consecutive days. Then she gets 7 days off before 7 more consecutive days. In addition to all this, tomorrow she will get Pegasaraginase (PEG) for the second time.
PEG is the IV chemo she received while we were in Oakland on day 4. This is the chemo that can have mild to severe allergic reactions. We are not exactly sure what the chances are that Maya will have a reaction but it’s worrisome enough to require the drug to infuse over two hours plus an observation period of at least two hours. That’s tomorrow at 1pm.
Today. As Maya was falling asleep tonight she muttered “today was a fun day”. She mentioned her favorite part was “going outside”. It amazing that, for Maya, the hardest part of this whole thing isn’t the nausea. It’s not the leg pain or the tingly toes. It isn’t even the uncontrollable mood swings from the decadron. It isn’t the nasty bactrim that she has to take twice a day only on the weekends. Or the “spicy” Zantac she needs to settle her stomach while on decadron. It isn’t even the constipation or the restlessness. It’s the small things we all take advantage of. It’s not being able to go outside when it’s windy…and it’s been so windy. It’s the isolation. It’s driving past the park on our way to the clinic and hearing us say “I’m sorry Beans, we can’t go to the park” when she asks if she gets to go there again.
She feels “meh”. She hasn’t thrown up but we have definitely kept on top of the nausea with some Zofran. I’m going to try to pull back tomorrow since it can contribute to constipation…in addition to the chemo. She’ll likely need more at the next infusion of doxo.
She sort of looks pale. She slept in today for the first time in her life…though I wish it was because of any other reason than not feeling well. She has started to snap at random things as the effects of decadron have already crept in. She has great times during the day then…boom. Tears for reasons even she doesn’t know of.
Today was a good day. Yesterday too. We all got to spend time with Auntie Megan, Uncle Adam, and her buddy Liam yesterday. She was certainly not 100% but she faked it like the best would.
Today we celebrated two of the most amazing men in my world. My father and Maya’s father. We couldn’t be luckier to have such incredible fathers. They both love us with all their hearts and will do anything to make us smile. They cry when we cry and they grow when we grow. Both Scotty and my dad have saved my life and I am grateful for them both every moment of my life. I truly hope Maya will feel the same in 30 years. Cheers to all fathers everywhere.
Today was a day of flight. Maya released her 5 butterflies that she raised. She watched daddy delicately take them out of the cage and she placed her hand out to hold them. She was fearless of them. She watched them fly away and wished them luck.
I watched her watch the butterflies fly. It was as if she was riding their wings…she was flying with them. She IS flying with them. Right now she is in need of some support. Some extra wind beneath her wings. I promise little Dragon…I will be strong. No matter what happens. No matter how hard it is, I will help carry you through the next battle. We will fight. We will breath fire. We will fly. We will win.
Love is Life.