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.

 

No bumps!

Hope hates potholes, speed bumps, and anything that jostles the car while we're driving. "No bumps!" she yells from the backseat. Unfortunately for her, we live in a city where potholes are both a major problem and not even breaking the top ten list of problems being addressed. So she yells, "No bumps!" and I call back, "Sorry, kid!"

This week we hit a couple of bumps in Hope's treatment; nothing major, but still bumps. But this time she is the one taking it in stride, while the rest of us feel like crying out, "No bumps!"

After the last chemo hold, Hope's numbers bounced up as expected and we restarted at the same dosages after a week. Ten days later, we returned to clinic today to see where she stood -- and she's neutropenic again. So it's another week-long hold to give her marrow time to recover. And this time when we restart it will be at 50% of her dosages, with incremental increases every two weeks until her ANC stays in the sweet spot of 500-1500. In the meantime, we are cancelling plans and hunkering down for the week.

The other bump is less physically significant, but maybe more emotionally consequential. Hope's hair is falling out again. It's probably because her chemo dosage was just a little too high and her counts plummeted. We knew this could happen during maintenance, but fair warning hasn't made it any easier. My heart sank when I was unbuckling her on Monday afternoon and saw her car seat covered in fine hairs. It's such a marker of illness, of difference, of fear and wrongness. A reminder that she is still in this battle, that the poisons I deliver each night are still doing their damage, and that even though we plan for the future and live a mostly normal life, the next ten months are far from what should be normal.

There's no picture for now. It's in that awkward, rapidly thinning, old-man pattern baldness phase. Depending upon how the next few days of shedding goes, we may have to shave the rest.

It will grow back. It's no big deal. It feels silly to care about it when so much is going so well for her. We know of so many kids who are dealing with real, lasting damage from the intense treatment. But we're going to feel a little sad about it, curse the bumps, and then pull out the sun hats and move on.

Taking a breather

Like most families, our day to day life feels like a race. During the school year, every Sunday night I go to bed thinking about the mad spr)int from Monday to Friday. Kids up, breakfasts in, lunches packed, out the door. Preschool and the separation dance, huddling in the parent room across the hall from her classroom trying to get through some work. therapy appointments, pick up kids, homework, dinner, play, the occasional bath, bed. Throw in grocery store, Barney, soccer practice, sweeping up cracker crumbs, LAUNDRY, and the dishwasher - and that pretty much sums up life around here.

Summer hasn't been much a respite. Camp schedules and therapy appointments, plus trying to keep everyone fed and active. And we've had some big events too.

Mare and Cait's wedding! (See more pics here.)

The Down syndrome conference in Phoenix....

... with a few days tacked on for visiting Sedona, the Grand Canyon, and more.

Quinn's 9 3/4 Birthday Party

He got skipped last October while Hope finished frontline treatment so we had a blowout backyard Harry Potter party, complete with a Quidditch pitch and a Golden Snitch cake made by Celia and Camille. He said it was his "best birthday party ever"! (What more could a mom want?)

I've been thinking about how last year all this stuff just ceased to exist. For months and months my calendar was just clinic appointments, Peapod deliveries, and a calendar of who was driving my kids to/from school. There was so little of life in my days. And yet... there was something in that surrender of regular life that was almost liberating. Of course, awful, but not a race. Moments did not fly by without my notice. Every day was a long series of watching, noticing, feeling.

It's odd how the everyday details of kids and home and work are all-consuming -  and then in an instant they disappeared into the background and seemed in many ways meaningless. And yet -I longed to return to those details. And yet - I sometimes now find myself longing for the perspective that put them in their proper place.

*******

Yesterday's clinic visit has granted us the opportunity for a little perspective, I guess.

First, I met a family whose daughter with Down syndrome has a brand new ALL diagnosis. It takes me out at the knees: the raw new pain, the wild fear, the utter bewilderment. It's impossible not to be overtaken by my own wave of memories while drowning in sorrow for the horrific road they are embarking on. We encounter new patients all the time on clinic, but it's different somehow when it's a member of our Down syndrome tribe. We'll try to walk with them on the journey.

Secondly, we found out that Hope is neutropenic - for the first time since she started maintenance in November. Her ANC is just 310, the consequence of either a virus or too much daily chemo. The result is a hold on her oral chemo for a week -- though she did have her 5th to last lumbar puncture with chemo today and her vincristine infusion and will proceed with a 5-day course of prednisone. I hate the idea of holding chemo; it feels dangerous and insecure -- though we are assured that it's common and to be expected. But it's also a return to extreme caution: no camp or birthday parties, no grocery shopping, obsessive hand sanitizing, and dirty looks at strangers who sneeze as we pass them on the sidewalk. Hope seems to feel fine despite it all, though the steroids are kicking in after her first couple of doses. She hates being told she can't go into the Giant to shop for her "big chips" and screamed for the 20 minutes it took Celia to run in and get the few things we needed this afternoon.

I guess we'll get that chance to watch and notice and feel -- and long for the regular life details going on beyond our four walls -- but just for a week this time around. Everything old is new again.

Happiness is...

... Your baby sister getting married to a beautiful, loving, nurturing, smart woman.

... Hope positively beaming as a flower girl, making sure she has the best seat in the house for the vows, and dancing the night away to her favorite pop songs.

... Going on a real vacation with the kids and Greg and my awesome parents, with airplanes and restaurants and hotels - and, oh yeah, thousands of people who love someone with Down syndrome and who want to be part of a supportive community creating a more inclusive society.

.... Having two Supreme Court decisions announced in as many days that protect the health care access extended to millions - and that saved Hope's life - and that affirm the fundamental right of Mare and Cait and millions of others to marry. Health and love rule.

Out with a whimper

This was Hope's last week of school for the year, but unfortunately we missed two of the three days because of clinic appointments. She's had a yucky cough off and on for the last couple of weeks, leading to one night spent in the ER, lots of sleepness nights spent in a steamy bathroom, and worry - oh, the worry. On Monday, our nurse practitioner determined that seasonal allergies were the culprit and started her on Zyrtec.

On Wednesday, however, when we went in for her lumbar puncture (which went fine except for extra low blood pressure before she woke up from her anesthesia - it's always something!), her ANC was only 600 - just a notch above neutropenia and a full-blown crash from the 1900 she scored on Monday. So a more likely explanation is that she had a virus that caused her body to ramp up her ANC for the fight, and is now depleted from the effort.

All that is to say, Hope couldn't go to the end-of-the-year picnic today. So she exits this school year with little fanfare...

But as I predicted just two months ago, the school year was short but sweet. Friends, exploration and discovery, and just a taste of independence. 

While I've been reflecting on Hope's return to school, I have been simultaneously inundated with stories and questions about the state of inclusion across the country. I recently joined a Facebook group about inclusion for kids with Down syndrome, and with almost 9,000 members, it is an active discussion forum. For me, it felt like another step back into the world of the living, where we need to plan for the next steps, not just focus on the narrow present of blood counts and chemo side effects. It has turned out to be a place of small celebrations, strident advocacy, and lots of horror stories.

From preschool to high school, most kids with Down syndrome and their parents have to fight tooth and nail to be included even in the most cursory of ways. There are lot of questions about the percentage of time in general education classrooms, pullout vs. push-in services, one-on-one aides, and curriculum modifications. There are heart-wrenching stories about kids coming home with bruises from being grabbed by adults, not being included in the yearbook, not being allowed to wear the same cheerleading uniforms as the "regular" kids, being segregated, excluded, disrespected, abused, and ignored. About IEP meetings where parents are told their children are too much trouble, not compliant enough, too unruly, not "high functioning" enough - to be part of their own communities. About kids who are being relegated to "self-contained" classrooms in pre-K and kindergarten with little hope of ever being part of a whole school community.

And then there are the triumphs. Pictures of kids going on field trips or to prom. Tales of multiplication tables memorized or spelling tests aced. But these are fewer in number and told to bolster the spirits of those who are repeatedly beaten down by the process, forced into mediation, due process hearings, legal battles, and often homeschooling or private school.

And in the midst of all this, I think of Hope. Of the meeting in the Community Play School office after her first day back, when all the teachers gathered and asked, "What does Hope need?" Not, "What are your requests?" Not "How must we accommodate her?" No. How can we meet the needs of this child, just like we meet the needs of all of the children here. The list was pretty short. Mostly about limiting exposure to any germs. And then she was in. Not accommodated, just in.

Inclusion is the natural state of being. I ran across a group recently that has an annual inclusion conference called "All Born (In)." That's it. Hope is in Community Play School. There is no fight about accommodations that they unwilling to provide, no discussions about how she will keep up or how to manage her behavior so she doesn't negatively affect the "regular" kids or be a drain on the staff. She's in.

(This week was also the comment period for a U.S. Department of Education and Department of Health and Human Services policy statement on inclusion of young children with disabilities in high-quality inclusive early childhood programs. And it's surprisingly good. Worth a read if you're interested.)

Remember what Dr. Gordon told Hope in March? (Hope still reminds me on the way to school...) "Gordon say I go in!" Yup, in, that's where she was and where she will be when she moves up to the City Room next fall.

"Gordon says I go IN!"

Last week we went in for our favorite appointment. Two months into each cycle we have an appointment with no procedure and no chemo - just a check up. They do have to access Hope's port to draw blood for labs but that's it.

Hope was happy to see everyone - and I think it was mutual. We got to hang out with our friend Amanda and her parents. (They are so close to maintenance - yay!) Plus clown and bubble bonus.

But it was some special good news that pushed us over the edge. Dr. Gordon gave Hope the green light to go back to school - not just play outside with the kids, but actually go *inside*! One of the attendings that we really like came by to reassure me that it would be fine. He said that the real threats to Hope these days are more internal than external - though even a low-grade fever still earns us a trip to the ER for IV antibiotics (so we'd just as soon she not get sick), it's bloodstream infections that are the real potential danger and there's not much we can do to guard against that.

We got to the car and my face hurt from grinning. It occurred to me that maybe Hope hadn't been paying attention to my conversations with the doctors so I asked her if she had heard what Dr. Gordon said.

"Gordon say I go IN!"

Yup, she got it. So Monday morning she got dressed for school, I packed her lunch, and as I gathered our stuff together she added a red tutu to her "first day of school" outfit. She is so 4.

The funny (and sort of devastating) thing is that Hope was given that tutu in the ER on the night she was diagnosed. ("Your kid has leukemia, but here's a cute tutu!") If I wasn't already overflowing with emotion about returning to school, that tutu pushed me over the edge!

We are taking the transition slowly. I didn't have her medical forms filled out last week so I had to stay the whole time. But that was a bonus: I got to hang with a super cool group of 3-4 year olds and their loving and excellent teachers whose patience and wisdom reminds me of my best parenting moments (but they do it all day long, every day, with other people's kids!), and I managed to take some pictures documenting her return to the world of children.

First stop: Painting!

Greeting her old pal Ginny

On top of the world (and the beehive)

"Hope, I need you!" called her new friend Signe. (It seems they both have a fondness for playing Happy Birthday.)

"I want to sit next to Hope," said Joe. (True story!)

Playing babies with Lola (in a toucan suit, 'cause why not?)

On the ramp
 (We are having a hard time fitting in all our home therapy appointments with our new school schedule, but that's OK because there's so much PT and OT and speech built in to the day at Community Play School. Lucky us!)

The tail end of an incredible, spontaneous group hug - on a table in the hallway. Confirming Hope's suspicions on multiple fronts that this is the right place for her!

Running in the halls

We spent Thursday at clinic getting a 4-hour immune system boosting infusion of immunoglobulin and telling tales of her triumphant return to school. Ready for next week!

It's going to a short school year, but it's going to be so sweet!