3 years

Another anniversary today. Three years ago right now (9:00 pm) Greg and I were headed to Hopkins' emergency room with Hope, leaving Celia and Quinn at home with my parents who had rushed up from DC. Everything was about to change.

It's weird that the day has felt so unbearably sad, when by all accounts it should be a day of triumph. She is here. She is magnificent. She endured challenges not rightfully presented to a child, with a grace that is hard to understand.

But instead it is a day when our gratitude for today is partially clouded by the grief of all that is lost. Grief for Celia and Quinn who will always carry the burden of their interrupted childhoods, of painful and frightening memories, of parents often too distracted or damaged to give them the environment they needed. Grief for Hope who lost so much time to be a child, to explore her world and play with other kids, and who may still suffer from as-yet-unknown late-term side effects. And grief for Greg and I who face too many moments of dread when a bruise seems too big or too sudden, when a cough or runny nose cause an internal spiral into terror.

There's also the innocence that we all lost together - you and I. We will always know intimately the world of pediatric cancer. Children given diagnoses infinitely more devastating than Hope's. Parents who dutifully follow the protocols and maintain brave faces, only to lose their children in the end.

Tonight some other family is heading to the ER. They are hearing those words. They can't understand how this could be happening to them.

Tomorrow the sun will come up and we will, all of us, put one foot in front of the other, and count another day. Some are counting down to the end of treatment, while others are counting up to the milestones of post-treatment as the odds of relapse dwindle.

Tomorrow it will be time to push aside the grief for awhile and refocus on the overwhelming gratitude.

Tomorrow Hope will get up and go to school. She will hang up her backpack and return her homework book ("The Snowy Day") to the book bin. She will sign in and practice a few letters for a warm-up. All the while, she'll be greeting each new friend who arrives for Kindergarten. "Look! It's Alana! Alana's here!" And when I meet her in the courtyard after school, she'll give me a running hug and proclaim, "I had a great day!"

Port's out!

Today we reached a huge milestone: the removal of Hope's port. 

The history of that tiny device is so remarkable. It was implanted in her chest on March 17, 2014, just as she ended the first phase of treatment (Induction). And through months and years we finely tuned the routine turned ritual of accessing it. In workhorse fashion it was a means of drawing labs and getting countless blood transfusions, chemo infusions, and IVIG treatments. We were so lucky to have only the slightest troubles - an occasional clog - while some kids get life-threatening infections, port failure and replacements, and persistent problems with access. It made so much possible - and now its work is done.

Hope will have monthly lab draws through a peripheral IV from now on. Not quite as easy as her port access, but no danger of central line infections and no racing to the ER for small fevers. 

She was scheduled for a 10:30 OR time, but we got a call yesterday changing it to 11:45. Damn - that's a long time with no eating or drinking but that's the way it goes. Then we arrived and found out they were running late. Sigh. At 1:45 she was finally taken back. But she was a total champ - she played and played, and hardly complained at all. I think she handled the waiting better than Greg and I did!

And by the time we arrived in the recovery room, she was already awake and asking for her doughnut. 

"I did it! I all done!" 

"I brave, mommy."

Yup, she really did it this time. Last visit to the downstairs doctors. No more port. All done.

Time to move the mountain: Childhood Cancer Awareness Month 2016

September is Childhood Cancer Awareness Month. It's more than halfway over and I haven't acknowledged it. I haven't posted appeals for blood donations or charitable contributions for organizations that serve kids and their families who are fighting. I haven't told you the shocking statistics about how many children are diagnosed every day, or about the shamefully low percentage of total research dollars spent on childhood cancers. I haven't shared the horror stories of death rates or late-term side effects on kids and their families. I haven't shared the stories of kids I've been following online - on Facebook and blogs like this one who are dead. Gone. Whose parents and siblings had to wake up this morning to another day without their child, their brother or sister. I haven't "gone gold" with my Facebook profile picture or anywhere else.

There is so much pain in childhood cancer so I understand why even I spend a lot of energy running from it. Late at night when my chicks are sleeping I huddle over my glowing phone and read the stories of kids in the thick of the fight, and cry for the ones we've lost, and feel so much guilt for all the work that must be done that I haven't contributed to yet. But when I wake up I look at my girl and I focus on the day ahead. I try to forget about my late-night reading sessions and my lingering fears. I get lost in my work and my driving of children all over, back and forth, morning and afternoon, and the dishes and laundry and grocery shopping.

But 19 days into September I guess I need to get some stuff off my chest. To at least give you a little information so maybe we can each in our small way start to chip away at the mountain of challenges between us and a future with more hope for kids with cancer and their families.

* Each year in the United States 15,780 children are diagnosed with cancer - that's 43 children every day. Forty-three times a day a doctor sits down and delivers that horrifying news to parents. It's almost certainly the worst news they have received to date - and somehow, impossibly, it has opened up the possibility that someday they might get even worse news, that the bar for the "worst news ever" has actually moved. How does the world not collapse in on itself from that much sadness entering the world every day?

* 1,960 kids die every year. Cancer is the number one killer of children by disease.

* The "cure" rivals the disease: 2/3 of childhood cancer survivors face moderate to severe health problems or chronic side effects from their treatment. Within 30 years of diagnosis, 35% will die. That means that many of the kids who are "cured" end up with heart or liver or kidney failure, with secondary cancers caused by the chemotherapy or radiation -- fatal consequences of their cure that cause them to die before they turn 50. 

* Since 1980, three new cancer drugs have been initially approved for children - THREE. The protocol we followed for Hope is basically the same as the treatment protocols used in the 1970s.

* Of the $5 billion spent on research by the National Cancer Institute, less than 4% is spent on childhood cancer research. FOUR PERCENT.

Just in the last few weeks three kids I've been following from afar have died: Lacey, Ty, and Jack. If you're the praying sort, pray for their families. Pray that the people close to them will provide them with comfort and the space to grieve and rage and then very slowly pick up the pieces that are left and figure out how to keep living. I have no idea how they will do it.

So what should we do? I find the statistics numbing and the crisis paralyzing. But here are a few ideas, and if you will agree to try some of them, I promise I will too:

1. Contact your members of Congress and tell them what you know about childhood cancer and that we demand #morethan4. Find out how to contact them here. 

2. Give blood or platelets (like my amazing sister-in-law Joy who is a regular platelet donor). Find a local blood drive. 

3. Call a local hospital that treats pediatric oncology patients and find out if you can order dinner for families who are in-patient, or drop off coloring books and markers, or play your guitar in a common area some afternoon. Gifts of time and talent that let kids and their families know that they are not forgotten by the outside world - they make all the difference.

4. Make a donation to any of the amazing charities that support research and/or kids with cancer and their families: Make-A-Wish, Alex's Lemonade Stand, Casey Cares, Believe in Tomorrow, Forever Fierce Foundation, The Young and the Brave. Or if you want to support families in the Baltimore area who have children with Down syndrome and leukemia, you can make a donation to the Chesapeake Down Syndrome Parent Group and earmark it for the Amanda-Hope Medical Assistance Fund. Mail it to: CDSPG, PO Box 20127, Baltimore, MD 21284-0127.

5. Talk about it. Tell people about kids you know who have or have had cancer. If we only whisper about childhood cancer, if we run from the fear of it, if we can't face that mountain, we'll never get over it. The world turns completely pink in October. People put weird bumper stickers on their cars about ta-tas and buy yogurt with pink lids. We talk about survivors and those battling breast cancer - we race for a cure and debate the causes, the latest treatments, the best courses of action. And while obviously there is lots of room for improvement, there is also tons of research. And that's what we need for kids.

September 2014 (in the PACU)

September 2014 (on steroids)

September 2015 (at clinic)

September 2015

September 2016 (at Ft. McHenry, photo credit: Sarah Ridgway)

Ready for takeoff

We got a call this morning that Hope's port removal was scheduled for TOMORROW morning. Within a few minutes it was being rescheduled for a later date because of a cough she is still kicking from last week, but for a few heart-pounding moments I was overwhelmed by the realization that our last visit to the "downstairs doctors" was at hand and that a huge milestone would soon be behind us. (Stay tuned for a new date!)

After the adrenaline subsided, I thought about how this is just one in a series of big scary-happy-thrilling-anxious moments we are in for in the next few weeks - including Hope's entry into kindergarten two weeks from today. It's momentous for every kid - to start "big kid" school, to spend more of the day with peers and teachers than at home or tagging along on errands or doing little kid classes and preschool. For Hope, however, this step seems monumental for reasons big and small, some obvious and some perhaps less so.

When we first heard how long Hope's leukemia treatment would be, I remember thinking that it would be over right before kindergarten began. And during the darkest days we, of course, worried we would not make it to this moment. (God, I hate even writing that down.) But now here it is. 

She is sparkling, full of energy, curious and chatty. Ready for new friends and adventures. She's been working on letter recognition, counting, and writing her name all summer. She's been drawing some mildly recognizable stick figures, putting together larger puzzles, playing card games with attention and stamina. 

We have, like most parents of kids with Down syndrome, been preparing for this since the earliest days of her infancy. All the home therapy, the IEP prep seminars and conferences, trading fears and lessons learned with other parents, and  late nights spent poring over horror stories about segregation, abuse, and low expectations on Facebook, and then later nights feverishly researching special education law and suggested accommodations for her IEP. 

But here's the truth: none of the parent seminars, legal advice, therapy sessions or skills we've been checking off the list are really worth a damn thing if the school doesn't want her. If the educators don't believe that every child is vital to the community, that learning is more than a one-way street of dumping facts in and tracking the data to define success, if we'd had to fight for the number of minutes she could spend in the "regular classroom." (Does that shock you? I've been learning about special education for almost 6 years and I am still dumbfounded that the battles often revolve literally around the number of minutes that children are "allowed" to be in the classroom with their peers.)

While I'm sure there will be bumps and we may end up with our fair share of battles and disagreements, we are starting at a place unfathomable to most families in our shoes - a school that wants her, that fundamentally believes in inclusion, that celebrates learning differences as one more form of diversity. The open arms awaiting Hope at City Neighbors have been preparing for her since she was born. (Check out Baby Hope in her "Future City Neighbor" onesie!!). 

Shortly after she was born the principal and the founder/executive director both told me point blank that "of course" Hope would come to City Neighbors. More recently, teachers have been reading and attending professional development in preparation. And in the last year we've been meeting with her future teachers and talking and thinking about what will ease the transition, what accommodations will be needed, and always building the trust and communication that are ultimately way more important to the success of this adventure than how many letter sounds she knows coming in or whether speech services will be provided pushed in or pulled out.

Does this kid look ready for takeoff or what?

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That picture reminds me that I never posted anything from our big trip this summer - to Orlando for the Down syndrome convention with bonus days at Disney World and Universal Studios. As far as Hope was concerned, I can summarize the trip as follows:

1. She met Mickey Mouse.

2. She met Barney (!!!!)

I would add a few more details. We discovered that Hope loves fast roller coasters (nothing too crazy or upside down, but still legitimate roller coasters), but hates any ride (even totally tame, pleasant "kiddie rides") if it's dark. She loves meeting characters - Mickey, Minnie, Goofy, Donald, the Cat in the Hat, whoever - if they had on a funny suit, she would give them giant hugs and pose for a picture. She loves all forms of transport - moving walkways, trains, boats, buses, whatever - but was too scared to look out the window of the airplane. All of us minus Hope loved Harry Potter at Universal. And the Down syndrome convention provides some of my favorite days of the year. Next year, Sacramento!

A bell's not a bell 'til you ring it

Today she rang the bell. Like millions of others who have completed cancer treatment. She rang it, she ate a glazed doughnut, and she delighted the clinic. It was a good day. She did it! We did it.

In omnia paratus

2 years, 3 months, 3 weeks, and 1 day since diagnosis - and she is finally done.

"Big news! No chemo!" was her refrain today. There will be lots of celebrating in the days and weeks ahead. We started today with lunch with Aunt Mare and Aunt Cait and Ellie, ice cream cones, and dinner at Frank's.

I bought her a t-shirt for today. It says "In Omnia Paratus" -- which means "ready for anything." It's a reference from her second favorite TV show - Gilmore Girls. Yes, second only to Barney, Hope loves Gilmore Girls. Has watched the entire series multiple times. Knows every character. Can repeat whole scenes verbatim. It's a long story...

But here she is, 842 days later. 41% of her days on Earth later. She is ready for life without chemo.

Hoping for continued health. Hoping for few long term side effects. Hoping for happiness, adventure, joy, calm. Hoping.

Something old, something new

Two days left...

This week Hope had her very last Music Together class - and that means I had my last class too. Our family has been involved in these weekly music classes for kids 0-5 and their caregivers since Celia was a baby -- so going on 13 years (with a couple of years off between Quinn and Hope). It was the first activity we returned to when Hope entered maintenance and she absolutely loves it. Most of our kid song repertoire we learned from Music Together - and we have a BIG kid song repertoire. In the last year she has been large and in charge in class -- passing out the instruments and collecting them, turning off the lights for the lullaby and then shouting "WAKE UP, EVERYBODY!" when the lullaby is over.

I admit that I cried when we sang goodbye to our dear friend and teacher Susan...

This week Hope also tried something new: horseback riding. Last summer she rode a horse for the first time and loved it. It took awhile for me to get the paperwork together, including the required medical forms and neck x-ray (to make sure she doesn't have atlantoaxial instability - a condition of the cervical spine that affects perhaps 10-30% people with Down syndrome). She was finally scheduled for her riding evaluation this week - and after a long drive, she got to spend 30 minutes up on Sisi, a sweet bay, who tolerated Hope's loud commands to "STOP!" and "GO, SISI!" The therapists had her singing the whole time in an effort to get her to raise her hands and work on balancing with her core rather than clutching the saddle. She loved every minute.

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Today is National Doughnut Day. Who knows why, or how I learned about it this morning. But it seemed as good an excuse as any to supply Hope with a glazed donut, her very favorite food and almost daily request. We had some other grocery shopping to do and the donut bought me a cooperative helper - bonus! At the self-checkout I sent Hope to the end with the bags and she was diligently shoving items into bags as fast as she could -- making sure to pack her favorite items (crackers, fruit snacks, more crackers) into one bag so she could carry her own stuff.

When I finished paying I headed down to the end to help her finish up just as an elderly couple was passing our lane. The woman smiled at Hope and said, "Training to be a bagger?"

It was one of those 'everything froze' moments for me.

I have no idea if she got a good look at Hope before she said it. If she realized that Hope has Ds. Maybe she would have made that comment to any cute 5-year-old in an orange shirt and hot pink pants being such a great helper to her mom. But in that moment it felt like a comment reflecting the woman's belief that my daughter with her visible disability will grow up and be lucky to bag groceries.

I'm having a hard time teasing apart the way this non-incident slapped me in the face. As I wheeled our wiggly cart to the car, clutching Hope's hand, I desperately wanted to call out to the old woman in the parking lot. To show her, to tell her, to explain the tangle of feelings and thoughts. I know that's kind of ridiculous -- there was nothing I could say. She didn't have malice in her heart. I'm sure of that even if in fact her meaning was 'your disabled daughter will make a great grocery store bagger someday -- with a lot of training.'

She couldn't have known that my emotions are running unusually high these days -- even for me. It's as if the surface of my skin is too aware of sensation, the smell of rain overwhelms, my kids' normal whines and gripes stab me, their giggles make me tear up.

To the extent I can unpack my own thoughts, I'd start with this: There's obviously nothing wrong with being a bagger in a grocery store - and I can imagine a future where Hope would thrive in that job. Chatting with customers, remembering regulars and their favorite purchases, being part of a team and being truly happy. It's not that my expectations for Hope are necessarily "higher" than that, or that I would be disappointed if that scenario became reality. (At this moment it is impossible to describe almost any future for and with Hope that could possibly disappoint.) It's that I don't have fully formed expectations yet and I'm not ready to limit her future to one that is so easy to envisage.

Her life unfolds. It surprises. Like that Rilke quote I love, the days ahead are "new, untouched, full of things that have never been, full of work that has never been done." We are preparing to turn a new page and what she will compose on the coming pages remains to be seen. We are a tangle of every emotion as we await that future.