We can't yet see the light at the end of the tunnel, but the tunnel seems to be a bit wider and higher, so we don't have to crouch as much. And occasionally we can stand fully erect and feel part of the world again.
Hope turned 4 a few weeks ago. It was a perfect warm fall day - with a trip to the zoo with cousins, a visit with Aunt Mare and Cait in from Chicago, lots of presents, a Barney cake made by her amazing big sister, spaghetti and meatballs, and s'mores! She likes the ritual of singing Happy Birthday and blowing out the candles, so we did cupcakes in the afternoon and a cake after dinner. (Hope didn't take a bite of either treat - still not into sweets - but Celia and Quinn appreciated it!)
It's hard to believe all that has happened since she turned 3.
Here's to a smoother ride this year...
****
We had to try three times to make counts to start maintenance, but she finally had a high enough ANC last Monday, Nov. 3. Unlike the other phases, where each dose of chemo and day of treatment are required by the protocol, and delays stretch out the timeline, long-term maintenance (LTM) is different. LTM has an end date - for Hope it's June 4, 2016 - and she'll go through a series of 85-day cycles until that date. Once you begin LTM, you are in it for the long haul - with no delays. Occasionally chemo might get held (for illness or low counts), but you don't "make it up." So the two weeks it took to get started were easier to take than the delays in earlier phases.
The objective of LTM is to keep Hope's immune system suppressed to a level that will prevent any lingering cancer cells from multiplying but will allow her to fight off routine viruses and bacteria. (The goal is an ANC that stays between 750 and 1500.) Lots of kids go back to school during maintenance, and live relatively normal lives, at least in comparison to the first 8 months of treatment. Once or twice in every cycle she'll have lumbar punctures with chemo (days 1 and 29 in the first 4 cycles, day 1 in the rest of the cycles), and day 1 of each cycle she'll get vincristine. We'll go to clinic about once a month. But most of the protocol is oral meds at home. Each cycle begins with a 5-day pulse of prednisone, and then there's a nightly oral chemo (mercaptopurine or 6mp), and a weekly oral chemo (methotrexate). The chemo dosages will get adjusted to keep her ANC in the sweet spot they are looking for. So that's the drill and we'll just see how it goes.
This week she's doing her first prednisone pulse - and it's intense. Lots of tears and tantrums - and near constant intake of Chex Mix. She feels pretty rotten - her belly hurts and her legs ache. But she is enjoying the tiny bit of additional freedom. After school yesterday, she and Quinn and I went *into* Frank's Pizza to eat. She was thrilled to be inside where she could say hello to everyone and people watch.
Here's to a smoother ride this year...
****
We had to try three times to make counts to start maintenance, but she finally had a high enough ANC last Monday, Nov. 3. Unlike the other phases, where each dose of chemo and day of treatment are required by the protocol, and delays stretch out the timeline, long-term maintenance (LTM) is different. LTM has an end date - for Hope it's June 4, 2016 - and she'll go through a series of 85-day cycles until that date. Once you begin LTM, you are in it for the long haul - with no delays. Occasionally chemo might get held (for illness or low counts), but you don't "make it up." So the two weeks it took to get started were easier to take than the delays in earlier phases.
The objective of LTM is to keep Hope's immune system suppressed to a level that will prevent any lingering cancer cells from multiplying but will allow her to fight off routine viruses and bacteria. (The goal is an ANC that stays between 750 and 1500.) Lots of kids go back to school during maintenance, and live relatively normal lives, at least in comparison to the first 8 months of treatment. Once or twice in every cycle she'll have lumbar punctures with chemo (days 1 and 29 in the first 4 cycles, day 1 in the rest of the cycles), and day 1 of each cycle she'll get vincristine. We'll go to clinic about once a month. But most of the protocol is oral meds at home. Each cycle begins with a 5-day pulse of prednisone, and then there's a nightly oral chemo (mercaptopurine or 6mp), and a weekly oral chemo (methotrexate). The chemo dosages will get adjusted to keep her ANC in the sweet spot they are looking for. So that's the drill and we'll just see how it goes.
This week she's doing her first prednisone pulse - and it's intense. Lots of tears and tantrums - and near constant intake of Chex Mix. She feels pretty rotten - her belly hurts and her legs ache. But she is enjoying the tiny bit of additional freedom. After school yesterday, she and Quinn and I went *into* Frank's Pizza to eat. She was thrilled to be inside where she could say hello to everyone and people watch.
*****
I realize now that I've reached the end of this post that I missed some major events during my blog hiatus: Halloween (when a fortune teller, Percy Jackson, and a princess had a great time in the neighborhood) and the Baltimore Buddy Walk (when Team "Hope for the Future" raised $3530 for the Chesapeake Down Syndrome Parent Group, Celia and Quinn ran the 5K, Hope walked the entire mile, and 32 of Hope's friends and family joined the 1000 participants on a cold, windy morning to celebrate our loved ones with Down syndrome).
Here's a few shots from both:
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| Team Hope for the Future |
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| The DJ played Call Me Maybe and Hope came running over to dance. |
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| Nearing the finish line of his first 5K |
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| Celia at the finish line: 2nd in her age group! |
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