Interim Maintenance

We began Interim Maintenance today, without a hitch. Dayssi's counts were high enough to give her new doses of old chemos plus starting her on new drugs. We don't know exactly what her counts are -- the nurse forgot to give us our copy of the labs. We know Dayssi's ANC is above 750 or we wouldn't have started new chemo medications today. But it is probably below 1000. So, continuing to fall, below what is considered normal, but not yet neutropenic.

While at the "hostibal," Dayssi acted thrilled to see her friends the nurses -- she was silly and super outgoing with everyone in sight, including Rita, the hospital's well-trained pet dog, Rita's trainer, and a little girl in the next room who was feverish and had come in to receive IV fluids. Dayssi played chase with Dr. Dahl in the clinic, giggling and galloping after him as he pretended to run away from her. We didn't have an official appointment with him today but he stopped and visited with us for a while, was happy to see her looking so well, and said he could not imagine how she has kept so much hair. She has lost a lot at this point, but, as many of you will recall, she had a ton to begin with. Our friend Karen sent us pictures today that were taken in April, just a month before the diagnosis. Dayssi's hair really was a sight to behold. Anyway, she was chatty and playful for the entire visit, even as her beloved nurse Kim administered the chemo to her port and then proceeded to remove the big bunch of bandages and the access needle that was stuck in there yesterday and left in overnight so that she wouldn't have to be poked again today. Dayssi usually hates having tapes and bandages removed, and I have to hold down her hands and feet while she tries to fight off whoever is working on her. Today, as usual, she was dreading being de-accessed (she said on the way over, "I think we'll just leave it in today, mommy"). But after we got to the clinic, Dayssi walked over to Kim and sat with her while I talked to our nurse practitioner, Tamara, about all of the new medications. As I glanced over my shoulder I could see Dayssi "helping" Kim, pushing the chemo into her PORT with her own little hands, and helping to hold up her shirt, pull off the bandages, and remove the needle without a whimper. I did hear this much of their dialogue:
Dayssi: "Are you going to take that out?"
Kim: "Yep, in just a minute."
Dayssi: "I'm scared!"
Kim: "You are? But you don't really want to run around with this in here all the time, do you? If we take it out then you can take a big bubble bath and go swimming. We're almost done!"
Dayssi: "Then I'll be FREE!"

It was quite the smorgasbord of drugs today. Dayssi received a push of vincristine (this is the drug that makes her jaw hurt, and her tummy hurt, for a few days after getting it, and it also makes her walk and run kind of funny). After returning home, we started a five-day course of steroids (dexamethasone, the original and still worst "yucky" medicine), plus the minty Zantac that goes with it (another contender for most yucky), and a new oral methotrexate, which Dayssi will take one night per week for the next two years. The methotrexate dose consists of 5 small pills, and also requires an empty stomach. So, after returning from the hospital, Dayssi had a drink with extra poo poo medicine (to stave off another undesirable effect of vincristine), dinner (Tacos!), some yogurt with steroids (dexamethasone), Zantac and grenadine. An hour later she had the 5 methotrexate pills, which she took by carefully placing each inside its own raspberry, popping into her mouth, chewing and, on occasion, swallowing without even feeling the pill! Piece of cake. An hour later, she had her regular 6MP pill, which she'll continue to take every night at bedtime for the next 2 years. This is the one that makes her throw up every morning but she doesn't know that, and doesn't mind taking it.

We were pretty stressed about all of the changes, but Dayssi was not. There was little struggle at all this evening. The hardest part was the steroids, but we discovered yet another innovation that seemed to help: Dayssi took the yogurt with a Tic Tac in her mouth, and enjoyed the challenge of trying to swallow the yogurt while keeping the Tic Tac on her tongue. In a few days, when Dayssi's jaw is aching and her tummy is hurting, it is going to be hard to get that yogurt into her. But we've done it before, and it is only 5 days on yogurt this month. Next month we'll have another 5 days.

India saw her therapist today and we think it went well. We spent about 10 minutes altogether in the office and then Dr. Larsen asked India if it was ok for me to leave them alone. She looked at the two of us like she thought that was kind of a fun idea, so I left them alone. At the end of the session, when I rejoined them, Dr. Larsen reported that she and India agreed it would be good for India to come and visit again. Score! So we're going back on Monday. India also started her new Capoeira class (Brazilian dance/martial arts) on Tuesday, and she really liked it although I thought it looked hard! She did complain afterward about her arms and legs hurting. But she is eager to go back.