The Last First Day

Yesterday was the Day 1 of Hope's LAST cycle of maintenance. 

She had her LAST lumbar puncture - her last of 24!

Her visit to the "downstairs doctors" was thankfully uneventful. She had the first OR slot so she didn't really complain about being hungry. And she never even bothered to turn on the iPad because she was so busy playing - mostly with this cool projected image activity they have in pre-op. 

After her wake-up doughnut and fist bumps with our favorite PACU nurses who have taken such incredible care of all three of us for 26 months, we headed back upstairs to clinic for her LAST chemo infusion (vincristine, which she had 23 times). 

And then she started her LAST steroid pulse - at post time we are 3 doses down, 7 to go.

It's the home stretch. Seventy days left.

As much as we smile - and tear up - talking about these final milestones - milestones that seemed unthinkably far away in the winter of 2014 when this began, it's hard to explain how complicated it feels from our current vantage point. Relieved to see the finish line. Proud and horrified and dumbfounded to look behind us at the track we've run. And completely unprepared for the road beyond the finish.

Unprepared because too much glee feels dangerous. Because we can't deny the undercurrent of fear. Because after taking one sucker punch, letting down our guard seems foolhardy. Because we can't imagine how we could handle what we can't even say out loud. We are unprepared for the future because preparing means either staying in the dark tunnel we've been fighting like hell to get out of for an eternity -- or really taking to heart the lessons of this journey and learning to face every day, in perpetuity, with courage and joy. And somehow teaching our kids how to do that too. I know it isn't really a choice so much as two extremes we'll waver between, but it feels like a crossroads.

A couple of days ago, on a warm late afternoon swinging session in the backyard, Quinn turned to me and said, "After you have cancer, you can't get it again, right?"

So much is beyond our control. No assurances. No pat answers. Knowing the percentages is not a comfort. We can't rationalize away the fear.

I suppose we will ultimately need to follow Hope's example - as we so often have in the last few years. On June 4, she'll take her last dose of oral chemo and treatment will be over. And June 5, she'll wake up and ask "Where are we going today? My school? Work to do? Soccer game?" And then we'll get busy with the new day.

Two years

Fighting disease.

Waging war on cancer.

Battling leukemia.

Bravery in battle.

It's a popular metaphor: cancer as an enemy to be vanquished by a genius strategy devised by oncologist-generals, an arsenal of the most powerful and deadly weapons and poisons, a skilled army of foot soldiers in the form of nurses and techs, and most of all the valor of our star little soldier.

Sometimes it's a sports analogy instead. It's a "team" around the star player. Coaches and cheerleaders. The opposing team is the enemy: unsportsmanlike, doesn't play fair, needs to be taught a lesson.

There's nothing inherently wrong with any of this. It's just a way to make sense of the senseless. It gives us all roles to play - supporters, reinforcements, prayer warriors, many good guys and one bad guy. But for some reason I can't quite put my finger on, these analogies bug me. In their sunny dispositions and tough talk, the complexity of this experience gets smoothed away into the well-worn paths of these metaphors. Teams and combatants win or lose. They engage the enemy and one comes out on top. But the reality is messier than that.

Maybe I don't want to make sense of Hope having leukemia. I want to cling to the belief that it doesn't make sense in any simple way. She had a mutation, one more likely because of her extra 21st chromosome. It led to a wild cancerous growth of white blood cells. Our discovery of those events still feels random, lucky, head-scratching. We have engaged an incredible set of medical professionals at an amazing hospital to execute the current research protocol to kill those cancerous cells. There are a million ways it could go wrong - infection, short term side effects, long term damage, and the seldom-spoken but ever-present fear of relapse. Along the way we see grace everywhere we look - in the dedication of nurses and doctors and medical techs, in the support of strangers who have traveled this road before and foundations constructed in the wake of the unspeakable loss of a child, in the simple acts of friendship and love when texts and voice mails check on our progress, in the steadfast love of our families. And most of all as we watch Hope grow into a person who astounds us at every turn - her humor and intelligence, her empathy and curiosity, her enthusiasm and insistence on a full life in every moment.

----

Every night at around 11, I put on my nitrile gloves load up a syringe and head into Hope's room. I whisper to her that I need to give her medicine and she groggily sits up, takes her med, sips some water and lays back down. Routine. No problem.

A couple of nights ago Hope sat up and said sleepily, "No medicine." Shaking her head, lips pursed, and a more forceful, "I no want my medicine." I had to do a little cajoling before she gave in. 

Two years of needle sticks and tubes. Chemo and anesthesia, anti-nausea meds and steroids. Sore bellies and aching legs. Interrupted sleep and long periods of confinement. She almost never complains. She tells us how she feels but she accepts what needs to be done. Two years. 

Two years of new words and new skills. When this started she was still speaking in at most 2-word phrases and signing a lot. Now she never. stops. talking. Unless she's singing. Jokes and idioms, stories and memories. Within a month of starting treatment, she wasn't walking or standing up. Now she's running, climbing, jumping. When this started she couldn't be away from me at all. Now she leaps out of the car at school and calls goodbye over her shoulder; she stays home with her big sister while I run errands; she has her therapies at the elementary school where she sits at the table and does every task until it's done. Two years.

Almost done. 121 days and counting.

____

My parents came to visit this weekend. Two years ago at 7:30 pm on Valentine's Day I called and told them to get in the car and come right away. By 9, Greg, Hope and I were on our way into the ER. My parents made the next eight months possible, dropping everything to sit in clinic with us, drive the big kids everywhere, shop and cook, and just be with us, witnessing the very worst days. This weekend we made new memories. Same cast of characters but very different times indeed.

It ain’t over ‘til it’s over (even if you get a peek behind the curtain)

Over the many months of Hope’s treatment, while googling this side effect or that neurotic fear, I have stumbled across the stories of other kids and families dealing with leukemia. I occasionally find a blog and obsessively read post after post looking for glimmers of hope, signs of peril, symptoms and reactions and patterns that match Hope’s experiences.

One thing that has stuck out to me is the number of kids who face setbacks or complications in the waning months and weeks of treatment. In fact, I can think of a couple of kids who spent the very last days of their protocols hospitalized for one reason or another.

It makes perfect sense. Their little bodies are exhausted from the years of punishing chemotherapy that has again and again pummeled their bone marrow and then let up just enough to push that marrow into service to replenish their bodies’ blood cells yet again. Toward the end of treatment, the marrow is tired, and fighting infections is harder. For many kids, especially those with Down syndrome, it can take years for their immune systems to fully recover once off treatment.

Having read so many of these stories of late-in-the-game hospitalizations, the recent pause in our regularly scheduled program shouldn’t have come as a surprise. For much of the fall, Hope’s ANC (the count of her neutrophils – or infection-fighting white blood cells) has been a little high. Her oral chemo meds are supposed to keep it in the 500-1500 range, below a normal person’s 1500-8500 range. Her numbers had been floating around 2000-3000, so in mid-December, her chemo was raised to 125% dosage.

On December 30 we went in for day 1 of maintenance cycle 6: a lumbar puncture, vincristine infusion, and the start of a 5-day course of prednisone. Her ANC was finally back in range: 890. At the time, I did have a moment of worry that it might not hold steady but our NP said we didn’t need to return to clinic for a month. No arguments here.

A few days later we get a call saying that Hope needed to come back to clinic for IVIG, an immune-boosting infusion – basically a collection of antibodies in plasma. So after spending two fun-filled days in preschool, we returned to clinic only to discover that Hope was extremely neutropenic – with an ANC of 120. And, not surprisingly, Friday afternoon she had a low-grade temperature above the threshold for an ER visit. With an ANC of just 20, she was admitted.

It had been 17 months since her last inpatient stay. So long that she probably didn't remember ever having slept in the hospital. For those of us who do remember (all too well), this return to the scene of the horror was a unexpected reminder of those days gone by – days we would all like to forget when she was so sick, skinny, in pain, so fragile – but still Hope. The first day or two were particularly rough for the big kids, I think, but as the days stretched on, we could all see that this time around was different.

She tested positive for rhinovirus – the common cold – so she was stuck in her room, but she clearly felt great. The only real struggle was keeping ourselves busy while waiting for her ANC to rise to 200. Bowling and parachute, UNO, board games, playdough, drawing and cutting and gluing, Magna-tiles, and more Barney and Gilmore Girls than are really reasonable. Six days until we were close enough to the target ANC for discharge.

____________

House arrest continued at home. A week later her counts had risen, but not high enough to resume chemo.

Week three of her chemo hold was dominated by the BLIZZARD OF 2016. And that’s when things started to get interesting… Over the past few days we have had the sense that we are getting a tantalizing peek behind the curtain at what our off-treatment world might look like.

One night at dinner she ate a cooked carrot. (It might not sound like a big deal to you, but believe me, it’s HUGE.)

She has been spending more time playing than watching the iPad.

Her speech seems to grow deeper and broader each day – including the existential question of the week: “Daddy, I have a question. Why is you?”

She is beginning to build her comedy routine. There’s one terrible knock-knock joke, and a couple other jokes that share the same punchline (“brown nose you!”).

She just obviously feels better. She doesn’t complain that her stomach hurts, or need a salty snack to nibble on at all times.

_____________

Today we returned to clinic and found that her counts have recovered and chemo restarts tonight. And so the curtain floats shut. Back to our regularly scheduled leukemia treatment.

We have four months and one week left. Maintenance, with its potential for ups and downs, fevers and crashing counts, hospitalizations and escalating chemo dosages, continues. And it won’t be over until it’s over.

But one day, June 4^th to be precise, this phase will be over. And then something new will begin.

Choosing trust

Tonight, as I write this, Celia is hurtling around the globe at 35,000 ft on her way to Germany with 17  of her classmates and three amazing chaperones. She'll be there for 10 days, visiting Berlin and staying with a family in Leipzig. I have no doubt that it will be a life-changing experience for her, stretching her imagination and opening her eyes to history, culture, and humanity in ways that only travel and the first taste of independence really can.

Needless to say, I am sitting here flipping between writing this post and obsessively watching the flight tracker and its minute-by-minute data of speed and altitude. It's got me thinking about trust, and how sometimes it feels impossible to keep trusting and yet it's the only course that is possible.

Recently Hope slipped away from her teachers at school while the kids were playing outside. She ended up at my car where I was working in the parking lot. She was never in any danger, but it definitely scared all of us. What followed was an afternoon where I think all the adults, and even Hope, were worried about whether this lapse had damaged our trust. (Hope kept saying, "I sorry, mommy." "For what, Hope?" "School." Sigh.)

In fact, I think I trust her teachers more than ever before. I witnessed how seriously they take their responsibility, how honestly they acknowledge a mistake, how quickly they address a problem and establish a new protocol to prevent something similar from happening again. And when it comes down to it, we only have two choices: to trust or to quit. I'm so relieved that they made it easy to choose trust. I don't suppose that choice will always be easy as Hope moves from preschool to big kid school to all the steps beyond.

In some ways Hope's cancer has given us the opportunity to practice that choice again and again. Once you leap into the world of cancer, you either trust or - I'm not sure what exactly - drive yourself crazy, I guess. On the one hand, I double check medications and read the labels of anything hanging on her IV pole. I watch to make sure gloved hands don't grab a doorknob before touching my kid. And I am unrestrained with the hand sanitizer. But ultimately I trust, because I have to. I leave her in the OR and trust the anesthesiologist heard me when I explained about her narrow airway and low blood pressure. I rush her to the ER with a fever or croup and trust that the oncologist on call will ensure all the treatments won't compromise her protocol. I administer her chemo nightly and trust that the pharmacists properly prepared it. I guess it's a "trust and verify" kind of situation. We do what we can do; we exercise vigilance on our end and then we take the leap of faith.

So tonight I'll do my best to trust the pilot and the mechanics, the flight crew and the air traffic controllers. And for the next 10 days, I'll trust my wise sweet daughter, her teachers and other chaperones, the school in Leipzig, and her host family.

Brave

Hope does not like going to the "downstairs doctors." (Now that I type that, it sounds kinda ominous, doesn't it?) It's what we call going to the OR for a procedure.

"Downstairs doctors" carries a lot of meaning for her. It signals that there's no eating or drinking in the morning, that she has her port accessed and the needle is left in (instead of just a quick in and out for a blood draw), and that there will plenty of waiting - in clinic, in pre-op, and in the PACU (post-anesthesia care unit). It's the term that means she'll get hungrier and hungrier, but the answer will keep being "no." And that eventually mom will put on the funny blue gown and hat and walk back with her to the OR, where one of the zillion anesthesiologists we've met will hook up her tube to the propofol (aka "the white stuff") and she'll fall asleep. She'll wake up some time later with heart monitor stickers all over her chest, and an oxygen mask, pulse-ox ("red light") and blood pressure cuff on, creating a tangle of limbs and cords.

Monday was Hope's 21st time in the OR. She's had 21 lumbar punctures. 21. 21 of the 23 she will have during treatment. (Yup, just TWO left!)

When she started this nightmare, she was so little. We did everything we could to maintain calm, to seem comfortable with the blue gown and the needle in her chest, to joke with the OR staff and make it seem totally normal that we would bring her to that sterile place and let them drug her to sleep. And it worked, I guess. She has never panicked. She complains about being hungry, but has never cried when we are called back. In the beginning, I think she accepted it all because she trusted us. She believed our calm and resolve. Our friendly exchanges with the docs and nurses made it clear to her that they could be trusted to.

But recently I have the sense that there has been a shift - from a blind trust to a level of understanding that demands bravery. She knows what is going to happen. She can tell us that she doesn't like it - she told the anesthesiologist on the way into the OR, "I don't like downstairs doctors." He told her he didn't take it personally. But with a quiet resolve she accepted being wheeled into the room, having her tube cleaned and attached to the anesthesia and fluids, having a pulse-ox placed on her finger, getting a blanket and little foam pillow. And then right before she dropped off to sleep she did one final check in with me: "After, I have a glazed donut, mommy?" "Yes, Hope." "I happy, mommy."

This is a steroids week -- and guess what? Hope doesn't like that either. So twice a day we do a little dance:
H: I no like the medicine.
M:I know, I don't either.
H: I no like it.
M: I know, but who says you need to take it to be all better?
H: Gordon!
M: Right, Dr. Gordon. Why does he want you to take it?
H: All better.
M: Right.
H: I no like it.
M: I know, but I'll put it in the ice cream so you won't taste it.
H: I no like it.
M: How many times do we do this medicine? 10 times, right? And look how many we've already done - 8. So we only have 2 left.
H: OK, I try it.

She grimaces and takes a bite. And then says, "Yay, all done!" when the three spoonfuls are down.

Crazy brave. She knows. And she faces it.

Here's what we know she still has to face:
239 days left.
2 more lumbar punctures with chemo.
2 more vincristine infusions.
669 mL of 6mp left.
247 mL of methotrexate left.
21 more doses of prednisone left.

You're Invited! Raffle and Buddy Walk

We had a busy, productive Labor Day weekend. House projects, cleaning, laundry, soccer, lots of backyard "playground" -- and we capped it off with a cookout and s'mores. As I was cleaning up and listening to Greg and the kids laughing in the backyard, swinging, sticky with marshmallows and itchy from mosquitoes, I was struck by the incredible difference a year makes. We spent this summer making up for the paucity of the last one when we never left Baltimore, spent 40 nights in the hospital, and saw the worst side effects of Hope's treatment.

August, 2014

August, 2015

Tonight's sweet end to summer is, however, bittersweet for us, because it's impossible to forget the children we know who are, right now, on the 11th floor of Hopkins Children's Center. Three beautiful children with Down syndrome and leukemia, and their parents and siblings, who have not spent long hot days at the beach this summer, have not eaten dripping ice cream cones as fast as they could while cracking up at the mess, have not marveled at the Grand Canyon and the startling beauty of the desert, have not gotten a new lunch box or cool binder in anticipation of the first day of school.

These families need our help -- our prayers, our support, and our love. They need to know that we are thinking of them and pulling for them -- that they are never forgotten as we go about the magnificent normalcy of life. Because, truly, it's the loneliness of critical illness that is its greatest under-appreciated sorrow.

In 2014, Hope and then a second little girl in our local Down syndrome community named Amanda were diagnosed with acute lymphoblastic leukemia. (Children with Down syndrome are 20-30 times more likely to get leukemia than typical kids. You can learn more about that devastating link here.) In response, our local Down syndrome organization, the Chesapeake Down Syndrome Parent Group established the Amanda-Hope Medical Assistance Program to provide financial support to families in the Baltimore metro region who have children with Down syndrome and leukemia. This support can help alleviate some of the practical challenges these families face because of lost wages due to lengthy hospitalizations and long days in clinic and overwhelming medical expenses. It also lets families know that they are not alone.

The need is immediate, with three new diagnoses in 2015. To replenish the fund, CDSPG is having a raffle, with a top prize of an iPad! Tickets are 1/$2 or 3/$5. The drawing will be held at the Baltimore Buddy Walk on October 4 (but you do not need to be present to win). You can buy tickets here - or  you can mail me a check made payable to Chesapeake Down Syndrome Parent Group (357 Rosebank Ave., Baltimore MD 21212).

Thanks so much for your support!

*******

And since I mentioned the Buddy Walk...

The 2nd Annual Baltimore Buddy Walk/5K will be held on Sunday, October 4 at 9 am at Rash Field at Baltimore's Inner Harbor. Buddy Walks are held all over the country in October, Down Syndrome Awareness Month, to promote acceptance and inclusion of individuals with Down syndrome, as well as to raise much needed funds for local Down syndrome organizations. CDSPG performs many important functions for our region including education seminars, sibling support, programming for individuals with Ds of all ages, medical outreach, and parent support, particularly for new prenatal and postnatal diagnoses.

Our family would love to have you join us for an amazing day of community, fun, food, music, and kids' activities! Please consider either joining or donating to Team Hope for the Future!

The kindness of strangers

Now that school is back in session, I have a couple minutes to reflect on the summer - and especially on the incredible kindness of strangers.

A few weeks ago Hope's wish for a backyard playground was granted by Make-A-Wish Mid-Atlantic. Our Wish coordinator Courtney, Wish volunteers Bill and Mary Ellen, and Play 'n Learn created something truly extraordinary that Hope will love and use for years to come. So many hours of coordination and care and labor went into this awesome project. And then Bill and Mary Ellen (and her kids) came by with a big box of Hope's favorite food (glazed donuts!) and even more presents to celebrate her wish being granted.

On the day of the build, every few minutes she'd call out the window: "Man, is it ready?" And this sweet guy would call back, "Not yet!" Until it was....

Hope's delight over the past few weeks has been immeasurable. I can't imagine how we could estimate how much fun her playground will provide over the next many years.

********

Our last week of summer vacation we were in Fenwick Island, Delaware. We stayed in a quiet little development a few minutes from the beach that was provided to us by Believe in Tomorrow, a foundation that has respite housing for families with critically ill children. They also have a building in Ocean City with several units and a couple of mountain houses.

It was our first time in the program and we weren't sure what to expect. We had the sense that we might find a gift certificate for mini-golf or a pizza in our welcome basket, but what actually happened blew us away.

The morning after our arrival I attended a mandatory orientation where I selected activities from a list of about 15, and then the program coordinator Wayne set up our schedule for the week. Here are some of our adventures:

We went horseback riding at Autumn Groves Horse Farm.

 

Seeing Hope sitting ramrod straight on that horse was breathtaking. She was confident, comfortable, and beautiful. (I think therapeutic riding might be in our future...)
 

Two lovely men in their 60s from Ocean Pines Marina and Yacht Club took us out on the bay for a morning of sightseeing and fishing. We saw the ponies of Assateague up close and caught a little fish. Being out on the water was thrilling - even while Hope was busy shouting "No bumps!" over the roar of the engine.

Hope and Celia had their nails done at Robin Walter Salon and Spa by two sweet women. Hope ended up with blue sparkly fingernails "like a mermaid."

We ate crabs (and lots more) with all the other families staying with Believe in Tomorrow in Ocean City at Hooper's Crab House/Sneaky Pete's including a visit by a pirate.

We spent an afternoon at Jolly Rogers Amusement Park and discovered that Hope LOVES kiddie rides. She was unstoppable! Quinn had a great time learning to drive a go cart (which unfortunately ended in a crash and an ugly seatbelt burn on his neck). I suspect his need for speed with eventually lure him back to the track despite the incident.

Greg and Quinn did a longer expedition on the Bay Bee fishing boat and Quinn caught his first fish - a bluefish.

We also went to a magic show, ate a nice meal at Mancini's in Fenwick, Greg had a surf lesson (unfortunately no pictures from that one!), and John Mick Photography took a family portrait for us on the beach. And we had the opportunity to meet a bunch of families that all seemed so familiar to me - their obvious love for one another, their slightly tentative way in the world, the stress and fear and resilience of months and years of treatment worn deeply on their faces. Instant connection.

A week of trying new things and keeping busy, but mostly a week full of ordinary people giving whatever they have - a fast boat, gentle horses, delicious food, their skills, their business - and then adding the extraordinary gift of their time to make the lives of children and their families better. I'm sure they were Democrats and Republicans, well-to-do and counting on their next paycheck, deeply religious and atheist, but they are all selfless heroes for some time each summer. Giving of themselves for no obvious reward.

This summer we were given gifts most precious - the kindness of strangers.