We are still here. Got through our joint teaching and Dayssi's first 3 weeks of delayed intensification in one piece. We had lots of extra help, including Grandma, our hero, who toughed it out on a futon mattress every night because the girls wanted to sleep with her. She also brought a couple of gifts, invented new games (e.g., tennis in the trampoline), walked India to school every day, babysat on Saturday so that Jim and I could go to a friends' BBQ and actually relax there, and, on top of everything else, made it look like she was enjoying herself.
Dayssi is swollen from the steroids, and her hair is falling out in clumps, but today was her last dose in this phase and we are relieved, like last time, that the course of drugs has ended without any major explosions. The dose of steroids was higher this time, and Dayssi was even hungrier, eating around the clock and, on occasion, waking at night for a snack. We had dinner the other night at our friend Liz's house, and she took in the feeding frenzy with big eyes. Liz was ready for anything and responded with her characteristic grace and generosity, but she finally let a few chuckles slip when, after having enthusiastically devoured two eggs, toast with butter, cantaloupe and avocado before dinner, Dayssi announced that she was "starving" for the homemade pizza she helped to make. Dayssi seems more self conscious this time about the changes in her appearance, I am sad to report, but otherwise her mood has been good. She is full of hugs and kisses and proclamations of adoration, for anyone who will receive them. What an amazing gift she is.
India is thriving. Today is picture day at school and we got up extra early to do some primping. She chose her outfit -- the blue dress that Granny sent recently -- and took a shower to calm her curls. She feels beautiful today, as she does most days, and as she should. I hope she can always see herself through such loving eyes.
I am emotional after all of that teaching. It is hard work pretending that everything is fabulous.
Tuesday, September 26, 2006
Tuesday, September 19, 2006
BUSY!
Just a quick note to say that Dayssi is hanging in there. Jim and I are teaching 6-hours a day this week, until Friday, with a few hours off in between to fight fires, but it doesn't leave time for much else.
We are in our third week of delayed intensification already -- next Tuesday Dayssi goes off chemo for a week. She has tolerated everything very well so far, no complications, no surprises, but she is really wiped out. Her little body is so weary, but her big ole' spirit is indomitable. These big long doses of steroids are really tough.
Although Dayssi won't receive any chemo, we were told that we have a 50% chance of being admitted to the hospital in the next week or two, which is when her body will receive the full impact of the past three weeks. Yikes. So we'll be laying low for a while.
We are in our third week of delayed intensification already -- next Tuesday Dayssi goes off chemo for a week. She has tolerated everything very well so far, no complications, no surprises, but she is really wiped out. Her little body is so weary, but her big ole' spirit is indomitable. These big long doses of steroids are really tough.
Although Dayssi won't receive any chemo, we were told that we have a 50% chance of being admitted to the hospital in the next week or two, which is when her body will receive the full impact of the past three weeks. Yikes. So we'll be laying low for a while.
Thursday, September 14, 2006
Symmetry
Tonight Dayssi gave Daddy his pills. And he gave Dayssi her pills.
Taking turns makes everything so much easier. What my colleague and friend Vic Vroom calls “the West Point theory of leadership”
Daddy even made a face, as if his were as nasty tasting as the dexamethasone. In fact, the Lipitor probably is, but daddy has his technique down, though Dayssi is giving him a run for his money. He also has the added advantage of chasing the medicine with daddy juice rather than bubba.
We are now having a snack of rice crackers.
Dayssi says, “Daddy, I love you” (Something we hear quite a bit lately – she loves the response it elicits). She continues, “Daddy, Grandma is coming over soon. India is going to ask grandma if she can sleep with her. Grandma may say ‘Yes’ or ‘No.’ She might say, ‘Sleep with Dayssi.’”
“What else?” I ask.
“Nothing else" says Dayssi .
“Are you sure?”
Nodding she answers, “Uh huh”
She takes a pen off the desk and announces, “Daddy this is your light saber!”
We are off to battle the forces of evil.
“Turn off the computer” she commands… and I do.
Taking turns makes everything so much easier. What my colleague and friend Vic Vroom calls “the West Point theory of leadership”
Daddy even made a face, as if his were as nasty tasting as the dexamethasone. In fact, the Lipitor probably is, but daddy has his technique down, though Dayssi is giving him a run for his money. He also has the added advantage of chasing the medicine with daddy juice rather than bubba.
We are now having a snack of rice crackers.
Dayssi says, “Daddy, I love you” (Something we hear quite a bit lately – she loves the response it elicits). She continues, “Daddy, Grandma is coming over soon. India is going to ask grandma if she can sleep with her. Grandma may say ‘Yes’ or ‘No.’ She might say, ‘Sleep with Dayssi.’”
“What else?” I ask.
“Nothing else" says Dayssi .
“Are you sure?”
Nodding she answers, “Uh huh”
She takes a pen off the desk and announces, “Daddy this is your light saber!”
We are off to battle the forces of evil.
“Turn off the computer” she commands… and I do.
Saturday, September 09, 2006
So Far So Good
Dayssi had her PEG asparaginase on Friday without any allergic reaction. It wasn't fun, getting two shots in the thighs at once, especially when she is so unaccustomed to being hurt at the hospital! It is amazing how well they do with keeping these kids from hurting. It really takes the edge off the whole experience, for everyone. Dayssi has told me twice since Friday that she never wants to have pokes in the legs again. I've told her that I don't think she'll have to, which is true, I think, as long as everything continues to go well.
We also shared a room during this experience with a little 5-year old girl who was getting chemo for some other kind of disease that gives her terrible-looking lesions all over her skin. She was very friendly, offering to share her portable DVD player and her toys. And her mom offered us snacks and tea. But Dayssi and I were both a little freaked. I tried hard not to show it but, for the first time I think since this whole business started -- and we are around very sick children a lot -- I felt like I wanted to get Dayssi as far away from this child as I could. I am still so ashamed for feeling that way; maybe it is because I think Dayssi is so vulnerable right now. Probably it is because what the little girl's mom told me was so frightening -- such a threat to my need to believe that when we finish treatment this will be over -- that I didn't even want to witness the possibility. The little girl's mom told me that her daughter had leukemia too and only developed this other disease afterward.
She got something else, equally serious, afterward???? That has to be a major violation of some kind of karma. Although I did see on an A.L.L. email list recently that one mom has two kids with leukemia. Some families on the list have a child with leukemia and a parent with some other kind of cancer. This little girl, in her treatment for T-cell leukemia, had to endure 40 shots of PEG asparaginase (we have 2 in our protocol), after which she got another life threatening disease. And I wonder, under what set of beliefs about God and the logic of the universe can these happenings be justified? It is all just so wrong.
Dayssi, amazing as usual, gave this child a good long stare, but she knew somehow not to make a big deal of the "bumps." She was polite, if somewhat distracted, but I know it got to her too because as soon as the little girl left the room Dayssi climbed on to my lap and said, "Mommy, don't let me get those bumps." I told her I would try my hardest.
The steroids haven't really kicked in yet, although Dayssi is already showing a strong preference for salty foods and she is definitely acting, in cycles, both more subdued and a little more manic than usual. She is really tired too, napping twice a day when she can, and falling asleep before 7:00.
Today we took the girls' bikes across the road to a little park with bike paths on it and we had a picnic lunch over there. Normally I push Dayssi's trike with a handle that comes off the back because she doesn't really know how to ride. Today, for the first time, she got the wheels going around herself with the pedals and was thrilled to be her own motor. We need to work on the concept of steering though. When I told her to turn her arms in the direction she wants to go, she let go of the handle bars and pointed. At least it was in the right direction! We'll get there.
We also shared a room during this experience with a little 5-year old girl who was getting chemo for some other kind of disease that gives her terrible-looking lesions all over her skin. She was very friendly, offering to share her portable DVD player and her toys. And her mom offered us snacks and tea. But Dayssi and I were both a little freaked. I tried hard not to show it but, for the first time I think since this whole business started -- and we are around very sick children a lot -- I felt like I wanted to get Dayssi as far away from this child as I could. I am still so ashamed for feeling that way; maybe it is because I think Dayssi is so vulnerable right now. Probably it is because what the little girl's mom told me was so frightening -- such a threat to my need to believe that when we finish treatment this will be over -- that I didn't even want to witness the possibility. The little girl's mom told me that her daughter had leukemia too and only developed this other disease afterward.
She got something else, equally serious, afterward???? That has to be a major violation of some kind of karma. Although I did see on an A.L.L. email list recently that one mom has two kids with leukemia. Some families on the list have a child with leukemia and a parent with some other kind of cancer. This little girl, in her treatment for T-cell leukemia, had to endure 40 shots of PEG asparaginase (we have 2 in our protocol), after which she got another life threatening disease. And I wonder, under what set of beliefs about God and the logic of the universe can these happenings be justified? It is all just so wrong.
Dayssi, amazing as usual, gave this child a good long stare, but she knew somehow not to make a big deal of the "bumps." She was polite, if somewhat distracted, but I know it got to her too because as soon as the little girl left the room Dayssi climbed on to my lap and said, "Mommy, don't let me get those bumps." I told her I would try my hardest.
The steroids haven't really kicked in yet, although Dayssi is already showing a strong preference for salty foods and she is definitely acting, in cycles, both more subdued and a little more manic than usual. She is really tired too, napping twice a day when she can, and falling asleep before 7:00.
Today we took the girls' bikes across the road to a little park with bike paths on it and we had a picnic lunch over there. Normally I push Dayssi's trike with a handle that comes off the back because she doesn't really know how to ride. Today, for the first time, she got the wheels going around herself with the pedals and was thrilled to be her own motor. We need to work on the concept of steering though. When I told her to turn her arms in the direction she wants to go, she let go of the handle bars and pointed. At least it was in the right direction! We'll get there.
Wednesday, September 06, 2006
Delayed Intensification
We began delayed intensification yesterday, and it was a long day, but it went very smoothly. At 9:30 am Dayssi had her blood drawn, through her port. Didn't even flinch. She had a lumbar puncture (under anesthesia) scheduled for 12:30, so we went to the hospital pre school to kill some time. Dayssi played independently for about an hour with a doll house and the people in it, and I drew pictures of sea creatures with stencils and colored pencils. Very therapeutic, for me. Dayssi finally had her procedure two hours late at 2:30 (it was an incredibly busy day, probably because of the holiday weekend). Piece of cake. She showed absolutely no signs of stress about any of it. In fact, she fell asleep in the stroller watching TV in the waiting room at around 1:00, and stayed asleep until I put her down on the gurney inside the procedure room. When she woke, she looked around, asked to smell strawberries (they put scented oils into the mask) and went right back to sleep. After waking she had a couple of popsicles and a blueberry muffin (first meal of the day, at around 3:30), and had an echo cardio gram (graph? I don't know what the test is called; it is an untrasound of her heart). At 5:00 we were back in the clinic, they gave her a dose of vincristine, and then she was hooked up to an IV drip of a bright orange chemical that looks like anti-freeze. Doxorubicin. It can affect the heart, which explains the echo cardio thing. I have to admit it kind of freaked me out, watching that stuff go into her (most of the drugs so far have been clear), but she was nonplussed, lying with her head on my lap, making up songs ("Mom, I never heard that song before!") . We were home by 6:00 and started steroids again at dinner time. But now she can swallow pills, with juice, just like a grown up. Hallelujah! No more big bowls of foul tasting yogurt. She still takes the Xantac with yogurt, but that is a tiny amount and although she dislikes it, it does not bother her enough to resist.
So, we have Day 1 under our belts. Today Dayssi is tired and a little subdued, and we've upped the frequency of her anti-nausea medicine. But she seems ok.
While in clinic, our nurse practitioner walked me through the plan for the next 8 weeks. I won't report all of the details here, but suffice it to say, she is going to get hit pretty hard. After yesterday's big bang, she gets an intramuscular shot of PEG asparaginase, on Friday. We do steroids for 21 days, with vincristine and doxorubicin once a week for three weeks. Then she gets a week off, no chemo during week 4. Then, if and when her counts are high enough, she starts three new drugs: cyclophosphamide, thioguanine, and cytarabine. The last one is a shot that we give at home for 8 days, during weeks 5 and 6. She gets another intrathecal methotrexate in week 6, and then we get weeks 7 and 8 off, no chemo. Then, it appears that if all is well, we start maintenance.
Just explaining this is completely exhausting.
So, we have Day 1 under our belts. Today Dayssi is tired and a little subdued, and we've upped the frequency of her anti-nausea medicine. But she seems ok.
While in clinic, our nurse practitioner walked me through the plan for the next 8 weeks. I won't report all of the details here, but suffice it to say, she is going to get hit pretty hard. After yesterday's big bang, she gets an intramuscular shot of PEG asparaginase, on Friday. We do steroids for 21 days, with vincristine and doxorubicin once a week for three weeks. Then she gets a week off, no chemo during week 4. Then, if and when her counts are high enough, she starts three new drugs: cyclophosphamide, thioguanine, and cytarabine. The last one is a shot that we give at home for 8 days, during weeks 5 and 6. She gets another intrathecal methotrexate in week 6, and then we get weeks 7 and 8 off, no chemo. Then, it appears that if all is well, we start maintenance.
Just explaining this is completely exhausting.
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