Back to Playschool

It was another new beginning today. Hope returned to preschool - just for outdoor play until flu season is over - but it was muddy and fabulous! All the way home she kept telling me, "Fun, mom, fun!" And when we called Daddy, she had just one word for him: "Friends!" 

A light in the darkness, and the new, untouched days ahead

It was a weepy Christmas week for me. Overwhelming to watch Hope so happy - playing with her cousins, tearing into presents, laughing, telling stories, and just enjoying this magical time of year.

We went to clinic on Monday and all is well. She is tolerating her daily chemo well and may need a dose increase next month - which is fine. It was a huge relief and I wish we'd had an appointment before Christmas instead of after so the joy of the holiday hadn't carried an undertone of fear. But all is well. We just need to learn to trust in the moment and enjoy the wonders of now.

White House Christmas Tour, 12/20/14

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Looking back at 2014 is difficult. We are so ready to close the door on it. (So ready, in fact, that we'll be moving into a new house in January! With a giant backyard and more elbow room! More on that soon...) But there's a contradiction at work when we do force ourselves to reflect on the year.

In a light-filled room, even the most beautiful lamp is just a room accessory, likely to be overlooked. But in an otherwise deep and complete blackness, that same lamp inspires hushed voices and awe. 

We are acutely aware of life and love and family this year. Moments of joy and health and the wonder of everyday things are burning more brightly than ever before. Blinding, brilliant light braving the darkness because that's what it is meant to do.

"And now let us believe in a long year that is given to us, new, untouched, full of things that have never been." - Rainer Maria Rilke

Welcome, 2015. We look forward with H/hope to the new, untouched days ahead.

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!)

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...

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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!

This girl

I feel like I started this blog to tell everyone about Hope and her journey, and somehow along the way it's turned into a tale of my journey. I'm sorry about that; I'm not a big fan of memoir. Maybe Hope and I have both regressed back to that infancy stage where we have a hard time remembering where one of us ends and the other begins... 

But today I want to tell you about Hope. How she changes people wherever she goes. How the life she brings into elevators and waiting rooms startles unsuspecting strangers. How today she charmed a therapy dog named Lewis. 

The Child Life Specialists at Hopkins periodically have therapy dogs visit the kids in the "Great Room" that's right next to clinic. Hope and I stopped in while we were waiting for her lab work to come back on Friday and met Lewis, a beautiful Chesapeake Bay retriever. They played ball and posed for photos. She refused to leave until he was on his way out too.

I'm kicking myself for not having the presence of mind to record an amazing dance party Hope initiated in her favorite pizza place a couple weeks ago. She was on her way out carrying a teetering pizza box in front of her, when Pharrell's Happy started playing over the restaurant's speakers. She immediately starts bouncing and then turns on her heel back to a more open spot for her full-on boogie. Two women who were ordering while this was happening, spin around and start dancing with her. Hope points at me, Nanna, and Quinn, and issues the command, "Dance!" Little bald cutie with a face mask and a pizza box, grooving to "Happy." It was like the feel-good movie of the week. As the song neared its end, we conga-lined it out of the restaurant, with one of these strangers leading the way. How was that not a viral video that landed us on a network morning show?

That's what she does. She lives this life fully present in every moment and invites us all to join her. (OK, sometimes the "invitation" is a a tad dictatorial.)

In my darkest moments I think that at the end of all this she has to be OK, because the world could not keep spinning without her, the pain of losing her would crush more people than could be counted. It's impossible.

But most of the time I just revel in her and the joy of being with her. And wonder at how she has taken all of this in stride and continues to do great.

She got her last dose of Peg-asparagase Friday. Her chemo next Friday is the last of  this phase. Maintenance is real, and it's coming soon.

Vigilance

Hope is almost three-quarters of the way through Delayed Intensification. Today she got the last of eight doses of cytarabine (or ARA-C). She got six of the eight infusions at home, with visits from a home health nurse (which saves us from hours in clinic!). Except for a lousy appetite, she's handling it all well and has loads of energy (especially after getting tanked up on red blood today), but it's a stressful time: her port had to remain accessed for two 4-day stretches and her counts are in free fall.

The bandage over her port site kept peeling up, which is a potential infection risk. Her IV anti-nausea meds and chemo are stored in the refrigerator and need to be removed at specific times. She is barely eating, and dehydration is a major concern. Oh, and last week, I turned the ringer on my phone off one night and missed the alarm to give her the "rescue drug" she gets for the intrathecal methotrexate; I remembered the moment I woke up at 6 am in a panic.

And now she is neutropenic; she will probably continue to have virtually no operational white cells for the next 3-4 weeks. So I feel her forehead all day long, hoping for no fever that would send us to the hospital until her ANC rises. Celia was home sick from school for 3 days a couple of weeks ago, but her ANC was higher then. Yesterday, however, Quinn came down with a temperature. (Sigh.)

The constant vigilance is exhausting.

As the parent of a child with leukemia, you make virtually no decisions. You don't pick a doctor, or weigh your treatment options. When you picked an ER, you picked your treatment team and location whether you realized it or not. Acute leukemia is an emergency situation, so your child is admitted and there you stay. (Lucky for us, we went to Hopkins!) Most kids, including Hope, are put on a research protocol for their specific type of leukemia and risk stratum; you can refuse the study and go with a standard course of treatment, but that's a tough call in the midst of the emergency you are dealing with.

Once in treatment, there are few parental judgment calls: You must call the docs if her fever is over 100.4. You must follow the intricate drug regimen and enforce a series of food, activity, and situation prohibitions (deli meat, construction sites, anywhere crowded). But within this prescribed parental role, there is one main duty expected of you: vigilance.

Keep her away from sick people. Monitor her fluid intake - and output. Watch for signs of infection, and petechiae (little bruises from low platelet count) and anemia. Pay attention to her energy level, her gait, her appetite, her sleep patterns. Be on constant alert for rashes, bruises, bleeding, mouth sores, cold symptoms, signs of pain, etc.

It's reassuring to go to clinic (or have a nurse come to the house) so someone else can assess her, listen to our report, and determine that all is well. I am suspicious that this vigilance will never go away -- it's a familiar feeling from the earliest newborn days when you feel compelled to make sure your hours or days old infant is still breathing -- but eventually you chase that fear away because no one can live like that.

There has to be some trust, some throwing up of hands in surrender. I'm hopeful that we can learn to be vigilant without being obsessive.

Hope has had 14 lumbar punctures so far. I hate waiting for her to wake up from the anesthesia, although she usually pops up groggily and immediately asks for "chips" or "bread" or "bagel" or "bacon" -- depending upon her favorite food du jour. But I can't stand the beeping monitors in the PACU: heart monitors, pulse rate, respiratory rate, blood pressure. And the alarms when anything falls out of "normal range." Kids with Down syndrome tend to be bradycardic (slow heart rate) when they are sleeping, so there are often flashing numbers and blaring alarms going off while the nurses seem wholly unconcerned. It's unnerving. Last Friday, with no fanfare, our PACU nurse got up and changed all the parameters of the monitor so it wouldn't beep. It was such a relief. Hope was breathing, her heart was beating, she was doing fine. There was no need for extra vigilance. She woke up asking for pretzels.

The bone marrow mysteries

September 5 was day 29 of Delayed Intensification, but as I noted in my last post, Hope didn't make counts; her ANC was 240 and needed to be 750 to begin the second month of this phase. We returned Wednesday, September 10th,  for a second try - still no go. 640. And again, Friday the 12th -- third time's a charm, right? -- certain that she would make it and we'd be off to the races. But... it was 730. Certain we'd make it this morning, the 15th, we found it stalled out at 730. Her clinic nurse Lisa said, "Bone marrow isn't an exact science."

It's a confounding idea. On the one hand, we get copies of her labs every visit with long lists of numbers - and it sure looks like an exact science. The percentage of neutrophils, eosinophils and basophils, grams of hemoglobin per deciliter, and counts of platelets and white blood cells per cubic millimeter, creatinine and bilirubin, glucose and aspartate aminotransferase. It's a flurry of numbers and we have gradually learned which ones are most meaningful, which drugs can elevate which levels, and when the highlighting of a number as "abnormal" (light gray) or "panic" (dark gray) is something to be concerned about -- and when it isn't.

But the numbers don't always behave as you might expect them to. They trend correctly, but day to day something that should be going down because of chemo might suddenly blip up, or vice versa. We are told to expect it to take 7-10 days for her counts to hit bottom after chemo, but on day 14 she's still heading down. Or, with another drug, her counts bottom out in 2 days and then start to rebound. And it all seems fine - no one seems concerned. We ask again and again, "But is it OK that...?" Yes, it's fine.

We've learned so much about this world of leukemia, but there's so much that is still a mystery.