Wednesday, November 26, 2014

Giving thanks...

... for the incredible Hope who brings more light and beauty into the world than seems possible for one small human. ... for the ways she has bounced back over and over from pain, discomfort, sadness, and frustration. ... for the great strides she has made in speech and strength and agility. ... for the example she provides to me and to everyone she meets of how to live for the present moment, to be open to the world and its people and experiences, great and small, to leave behind the problems of yesterday and focus on the blessings of today.

... for Celia and Quinn, who have grown so much both because and in spite of the impossible challenges they have been forced to confront this year. ... for their relentless pursuit of becoming more fully who they are. ... for their laughter, insane brainpower, and companionship.

... for Greg, whose steady presence makes so much possible. ... for his hand to hold and shoulder to cry on. ... for his love when it's the only thing to hang on to.

... for our families - parents and siblings and in-laws and the cousins - whose Facetime calls and hospital visits and frequent check-ins remind us of our most important connections in this world, the ones that will always be there to pick us up. ... and especially for my parents who dropped everything and practically moved into a hotel in downtown Baltimore to be here - to sit in clinic or our hospital room, to spend time throwing a football with Quinn or chatting with Celia about her day, and just to bear witness to all that has happened.

... for our neighbors and friends who fed us for months (too many to name, but must mention Kate and Dom!), drove our kids to and from school, call and text to let us know you are thinking of us (esp. Lisa!), listen to all the gory details with interest and compassion (esp. Dorothy!). ... for Jennifer and her family whose friendship and support for Celia and our family continues to buoy us. ... for old and dear friends who are far away but whose love still holds us up (and esp. Heather and Alyssa).

... for Pia, Rachel, Stacy, Linda, Erin, and all the therapists who have kept Hope moving forward, who always see her potential and believe in her, and who have given us company and normalcy in our months of solitude.

... for the nurses - the brilliant, kind, amazing nurses - who do their jobs with professionalism, accuracy, and skill, truly care for Hope and for our family, teach us how to manage the nuts and bolts of this ordeal, give us lessons in advocacy, and have become part of our lives in countless ways.

... for the doctors, who always give us their full attention, make their concern and care for Hope a priority, and answer our countless questions with respect and kindness.

... for the families who have walked this walk before us, who put their faith in the research protocols for the best interests not only of their child but of all the children who will face leukemia in the future. ... for the parents who have shown us by their example how to keep putting one foot in front of the other, even when it seems impossible, who face far steeper climbs than we do and still manage to say hello at the coffee machine or smile at Hope in the hallway.

... for the strangers who reach out with kind words and loving gifts, especially the Erwins whom we have never met but who have sent Hope many thoughtful care packages just because. (May we return that generosity of spirit into the world some day!)


Friday, November 7, 2014

Adventures in Hope-Land: A Birthday, Halloween, the Buddy Walk and Maintenance

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.


*****

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:



Team Hope for the Future

The DJ played Call Me Maybe and Hope came running over to dance.

Nearing the finish line of his first 5K
Celia at the finish line: 2nd in her age group!