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My, what a year can do.
Austin’s last day of preschool last year:
And Austin’s last day of preschool last week:
Which of course brings us back to that pesky old question: Was that his last last day of preschool?
Weeeellll, I don’t think so. I’ve been leaning more and more in the direction of not sending him to kindergarten next year. I’m still not completely positive because I do have moments when I think he should go, but with the exception of my mother (an avid rule follower) and a very few others, everyone has told me not to do it. The most resounding No’s have come from teachers. Not teachers who are saying that Austin himself isn’t ready, but teachers who say that any boy with a borderline birthday isn’t ready.
I guess it comes down to which decision we’d regret more and it seems much more likely that we’d regret sending him and having him struggle as the youngest than holding him and having him be the oldest.
We can register him for kindergarten through August so there’s still a chance he may go, but for now, it’s pre-K for Austin.
Even though he has already mastered a skill that Braedan practiced the entire summer before kindergarten: the monkey bars.
I didn’t really have an overwhelming response from all of you after my last post but I’m going to operate on the if-I-build-it-you-will-come principle. I have created two teams for the June 10 Kick It event in Chagrin Falls: Team Austin for 7 to 9 year olds and Team Austin for 4 to 6 year olds.
The organization is very lax about ages and categories, so your children can sign up for whichever team they are most comfortable. Obviously, if you have a 6-year old first grader who’s a classmate of Braedan’s, you may sign up for the 7-9 team. The woman I spoke with even said that 10-year olds or 3-year olds can sign up if they want. (It’s just kickball, after all!)
It’s free to register but is of course a fundraiser for vitally important pediatric cancer research so a small donation would be much appreciated. This event was started in Chagrin Falls by a local boy and has a huge following of supporters there, so it should be really fun. The games will take place at Gurney Elementary School between 6 and 7:30 pm, followed by games, food, a bounce house obstacle course, the whole bit.
What better way to celebrate the start of summer than with a kickball tournament? Please sign your kids up here by clicking on the appropriate team. You don’t even have to create an official fundraising page, you can just add their name and contact info (much easier and faster than the CureSearch site, I promise!). Spread the word, bring your friends, cheer us on … play kickball, cure children’s cancer.
I know that the summer baseball season has begun and most of Austin’s friends and classmates have 9am games on Saturday, making it next to impossible for people to sign up for this year’s CureSearch Walk. (But if you can, please do! Click here to register.)
But I have another opportunity that might be more doable for busy school families — and even more fun for our kids. I know some of you are familiar with Flashes of Hope, the national organization started by a photographer — and mother of a cancer patient — here in Cleveland that takes professional photos of children with life-threatening diseases and their families. They do wonderful work and help children feel beautiful even when going through something so ugly.
The founder’s son, Quinn Clarke, had had cancer as a baby and after he was successfully “cured,” his mother started the organization as a way to give back. At the age of nine, Quinn was diagnosed with a new, more aggressive cancer as a result of his treatment and this time he wanted to do something to give back. So he started Kick-It, a national program where kids (and adults) play kickball to raise money for childhood cancer research. Check out the website and watch the introductory video — it is very inspiring. The money again (as with the Walk and as with St. Baldrick’s) goes to CureSearch and the Children’s Oncology Group, which coordinates all of the national research on pediatric cancers.
So … here’s the opportunity part: There is a Kick It event already scheduled on Friday, June 10 at 6pm in Chagrin Falls. I’m waiting to hear back from the coordinator to see if the event is open to anyone or if it’s specific to their school. If people are willing and able, I can set up two teams for kids from the eastern suburbs (or anywhere, really) to participate. I would make one for the rising second graders (or anyone in the 6-8 age range) and another for the entering kindergarteners (or anyone in the 4-6 age range).
Let me know if you’re interested in participating, either by commenting here or on Facebook. If we have enough interest and if the Chagrin Falls one isn’t open to us, maybe I could plan one of our own for later in the summer.
For those of you who are local, there are a few great ways to support the CureSearch Walk even if you’re unable to actually walk on that day. (Although if you are able to walk, please do! Register here.)
The two events below honor the memory of Olivia Crowley, a Cleveland Heights girl who lost her three-year battle with Ewing’s Sarcoma at the age of ten, shortly before Austin was born. I didn’t know her, but I know some of you did and have heard that she was a vibrant and loving child and a beloved student at Ruffing. Her parents are the co-chairs of the Northeast Ohio Walk and Mark and I have had the pleasure of working with her father on a variety of cancer-related issues.
So, in Olivia’s honor, raise a glass and a fork to help Reach the Day when all children diagnosed with cancer are guaranteed a cure:
I was feeling a little pathetic about the fact that Mark and I haven’t danced with each other in nearly four years so I took a more careful mental inventory of events we’ve attended and realized we have indeed danced with greater frequency than I gave us credit for. We danced when we went to D.C. for the Inauguration (at least at the Ohio Gala — I think we were too tired to move by the official Ball) and we’ve danced at several benefits we’ve attended over the years — definitely the Rainbow Gala and the Diabetes Association events and maybe others I can’t recall. And there have been numerous living room danceathons with the kids, to Austin’s favorites Zingo, Zango and the entire Juno soundtrack.
But none of those make such a good story as our fifth wedding anniversary so I’m just gonna stick with that. But I am gonna try to incorporate a little more dancing into our lives.
There were many years when Mark and I planned our springs and summers around weddings. Weddings of his friends, my friends, family members. Weddings in Cleveland and Chautauqua, Chicago, Florida, New Orleans and Boston. And then suddenly, right when we were complaining about too many weddings, they stopped. We got old, I guess, and as many friends were getting divorced as getting married.
We went to a wedding this past Saturday, our first since my brother Eric’s when I was (very) pregnant with Austin — a balloon of a bridesmaid, if ever there was one.
So I was very pleased when we were invited to my friend Ann’s wedding in Chautauqua. This is the Ann who was my long ago summer friend who reappeared in our lives on our second day on the pediatric oncology ward as Austin’s nurse practitioner. We quickly caught up on the years that had separated us, and she became a solid and irreplaceable fixture in our cancer story.
She had warned me ahead of time that Ariana’s parents would also be at the wedding. “Sweet Ariana” who we knew in the first few months of Austin’s treatment and who has been gone from this world for almost four years now. I hadn’t seen her parents since Ariana was still a patient on the floor but think of her and her mother nearly everyday, so was very excited to see her. I knew this was bound to be an emotional night but thought I would be okay. And then I first glanced her across the room, looking ever more glamorous than the sweat-panted version I used to know, and immediately got choked up. We waved to each other across the room but couldn’t get close enough to say hello as the ceremony was about to begin.
And then a beaming Ann walked down the aisle to her eagerly waiting groom, and the ceremony began. And oh, begin it did. They had the traditional we-wish-to-remember-these-people-who-are-no-longer-with-us-today: Grandma Mildred and Grandfather Harry, Great Aunt Beatrice and this ancient person and that ancient person and then — you’d think I would’ve known it was coming — and then, “and sweet Ariana.”
Oh my god, I almost had to walk out of there. I didn’t dare look up at Anna Marie — that would have been the end of me. I cried behind my hand until Mark pulled a tissue out of his pocket (“I thought you might need this, honey”).
The evening wasn’t all tears. There was laughter and hugs and lots and lots of dancing. It was so special to get to catch up with Ariana’s parents and hear about their older son and their new younger son. Although I cannot truly fathom what they go through each day, I do have an inkling. I see myself and Mark in each of their (sometimes opposite) ways of moving forward. I was able to freely ask the questions like, “What do you say when people ask you how many children you have?” (she says three, he says two) and “What did you do with her bedroom?” (kept it the same for a good long while, but often had to shut the door, and finally made it the new baby’s room).
I know Anna Marie wants joy in her life — and has joy in her life — for her own sake, for her husband, for both her children and for the memory of her oh-so-special daughter. But I know she has pain in her life too, every single day.
All in all, it was a lovely evening, for so many reasons, not the least of which was Ann’s palpable happiness. I spent several hours on the dance floor in my too-high heels. In the recent berth of weddings, I haven’t had many opportunities for dancing, but it does feel good (except for, you know, my feet). I even managed to get Mark out there for one slow song. As we swayed to usual wedding band fare (“I Can’t Help Falling In Love With You”), I thought back to my brother’s wedding in 2006 and marveled aloud, “Is this the first time we’ve danced with each other in almost five years?!”
“No honey,” he said with certainty. “No, it’s not.”
Oh right. It’s been almost four years but there was that night, our fifth wedding anniversary and our fourth night of more than one hundred sleeping on the pediatric oncology floor of the hospital. We had take-out pizza and wine in plastic cups, which we hid behind our backs like kids at a high school party every time a nurse walked in the room. We watched our wedding video and we danced to Ben Folds’ “The Luckiest,” two images of one couple: The first in miniature on the television screen, a fairy tale bride and groom dancing under the stars with the moon reflecting on Lake Chautauqua behind us. The second, in stark contrast, leaning against each other in a hospital room, silhouetted against the green glow of an IV pump, sick baby asleep in the cage-like crib beside us.
Sure didn’t seem like a fairy tale in that moment. But I’m still holding out for that happily ever after.
… one to go.
All went well today, except that everything took way longer than expected. But Austin was a trooper — it is so much easier to wile away half a day in waiting rooms at this age than it was when he was a baby!
His chest CT came back clear — no sign of any cancer in his lungs. His abdominal ultrasound remains unchanged, which means that unidentified spot we’ve been watching in his liver for almost a year has not grown or changed in any way, but is still there. It’s tricky because ultrasound doesn’t produce a perfectly clear image and the spot appears only when looking from certain angles but not others (as has been the case since we first noticed it). The radiologist said he highly doubts that it’s anything worth worrying about but would prefer to use an MRI or abdominal CT for a better look.
I discussed this possibility with Austin’s oncologist, because it would first require a repeat GFR to determine if Austin’s kidney can even handle an MRI or CT with contrast. We decided that, while a GFR might give us some comfort regarding his kidney (we haven’t had one since last May and I would love to see a number considerably better than 27), the day long procedure is difficult to do without a central line and, even if it was high enough to allow further testing, we’d then have to weigh the pros and cons of MRIs versus CTs, and then if we chose one over the other and were actually able to get a better look at this little blob, that still wouldn’t tell us definitively what it was, and then we’d have to decide if it was worth attempting a needle biopsy, which would be extremely difficult because this spot is only one centimeter in diameter and we’re obviously not going to do a surgical biopsy and then, and then, and then.
In truth, the potential information we could get by doing an MRI or CT isn’t really worth much. Even our oncologist said that doctors just like more information for the sake of information: “We want to know everything we can know.” And, “The radiologist is an image guy so he wants better images.” Needless to say, we decided to leave this little thing alone until there’s reason to worry about it.
His labs also came back good — creatinine its same steady low and CBC numbers all in safe ranges.
Numbers and medical jargon aside, all you really need to know is that we have made it one year cancer-free. Dr. Auletta said that 80% of Wilms tumor relapses occur within 18 months of stopping treatment. (That does not mean that 80% of children with Wilms tumor relapse! Just that if they do, it happens within the first 18 months.) So, six months from now, his chances of relapse go down significantly. And six months after that, we are almost free and clear.
The other piece of good news from today is that we learned that Austin is allowed to take Claritin. I know this may sound silly next to discussions of potentially cancerous spots on livers and all, but he has been miserable lately due to his seasonal allergies. Puffy eyes, sniffly nose, constant sneezing. I had always thought he shouldn’t take allergy medicines because they’re filtered through the kidney, but I was happily mistaken.
So as we were walking down the hallway back to the parking garage after nearly six hours at the hospital, Austin skipping along beside me, I said, “Honey, all your tests were good today. We can’t see any cancer in your body.”
He looked up at me and said, “And no more sniffles?”
I guess if that’s his greatest worry, we’re in a pretty good place.
Tomorrow are Austin’s one-year scans. He’ll have his usual procedures: labs drawn, followed by an abdominal ultrasound to look at the liver and kidney, followed by a chest CT, followed by a visit with his oncology team. And we’ll follow our regular schedule: a normal morning at school, then lunch at the fountain outside the hospital, then many hours of roaming back and forth through the underground maze from one appointment to another.
The radiologist usually gives me a basic rundown on his findings during the ultrasound, so that information I’ll have before we even walk out the door. The CT scan takes longer to read (or longer to be read, is more like it), so we might not have official results from that until Friday. Some of the labs are quick and we’ll have those back by the time we return to the cancer center after scans, but the kidney numbers — which we await with bated breath — won’t come until after we’ve gone home.
Of course, we hope for no changes to his liver, kidney or lungs and either an improvement or maintenance in terms of kidney function. We feel good, hopeful, optimistic, but we’ve always felt that way, even when we were way off base. He seems so normal and vibrant — but he’s always seemed that way, on the outside at least, even when things were going horribly wrong on the inside.
So, we take this one step at a time. And potentially, hopefully, as tomorrow comes to a close, we will find ourselves one step closer to an end. Not the end, because that will never come. But an end. Which would be good enough.
Walk with Austin.
The CureSearch Walk for Children’s Cancer on Saturday, June 4 will raise awareness and critical funds needed for research into the prevention and treatment of childhood cancers.
While we all hear a lot about the advances made in cancer treatments, the truth is that for pediatric cancers, progress is painfully slow. Most national dollars go to adult cancers, and drugs and procedures then trickle down to kids. Sometimes this works fine, but it fails to recognize the impact of long term side effects on those who still have fifty or sixty or seventy years of life ahead of them.
I remember countless times when we were making medical decisions for Austin and his oncologist would list the potential side effects, things like heart failure or secondary leukemia, that might occur ten or twenty or thirty years down the road. We would worry and fret, wishing we had options, but his oncologist would always say, “You can’t worry about what happens in twenty years. You have to get to twenty years.” So we did what we had to and, while we are of course thankful for each moment we get today, he nonetheless has a lifetime of major health issues ahead of him.
It doesn’t have to be that way. It shouldn’t be that way. We must insist that doctors and researchers (and funders, both individual and federal) work in a way that guarantees progress. Currently only 5% of the budget of the American Cancer Society goes toward pediatric cancers. The same is true for the National Institutes of Health. Major nationwide fundraising activities, like Relay for Life (often hosted by high schools and colleges), dedicate less than 5% of their dollars to childhood cancers.
We can do better. CureSearch and the Children’s Oncology Group are the key to making a difference. They are conducting the research that may be too late to help Austin but could cure the child who is diagnosed today and another who is diagnosed tomorrow and another the day after that. All you have to do is sign up to walk on Team Austin on Saturday, June 4 at Wade Oval. Follow the steps I outlined here to make your registration as painless as possible. And make sure you join our team!
You may not cure childhood cancer. But you can take a first step.
Early in Austin’s cancer journey, when I first requested wishes to transcribe onto the stars dangling from his hospital room ceiling, several people mentioned “homemade cards” in their wishes. As in, “I wish you live long enough to make plenty of homemade cards for your mom and dad.” At that point in my parenting career, with Braedan only three-and-a-half, I hadn’t yet gotten many homemade cards, or at least not many that were more than scribbles and smudges.
But now that I’m seven and a half years into motherhood, I can attest to the special joy of the homemade card. The “Look, Mom, I wrote that myself!” Or “I drew all four of us” with a headfooter father, mother, and two children, all legs and heads but no bodies.
It is the same joy that can be found in a smooshed handful of dandelions, given with pride and love. The gifts that in and of themselves mean nothing, but mean everything because of who they come from.
May all mothers know that joy. And may all children, those grown and not grown, continue to spread it.
A repost of last year’s Mother’s Day blog, just because I really love it:
Here is the latest video from Kelly Corrigan: the thank you note that moms really want and really deserve from their children on Mother’s Day. Of course, few of us will ever hear such words pass our kids’ lips (or at least not until they have children of their own!), but we can at least hope that somewhere deep inside their beings they feel them. It’s not that we want them to owe us anything — not even thanks (although that would be nice) — but just that we all, as mothers, want our kids to be aware of how hard we try and how deeply we care and how much we love.
I’ve added a few of my own:
Thank you, mom, for taking care of me day and night. For holding me and rocking me back to sleep at 3 o’clock in the morning when I’m woken by some stranger taking my blood pressure. Thank you for remembering all my medications and making sure I get just the right dose at just the right time of day, and for turning it into a game or a race so it somehow feels fun, like when you take a Tums right along with me before I eat my cheesy meals so we can have a “Tums race” or be “Tums buddies.” Thank you, mom, for always (or at least, often) packing the right lunch and snacks and books and toys to keep me busy through hour after hour and day after day in the hospital. Thank you for never failing to flush my PICC line even when it’s midnight and you’ve just drifted off to sleep in your warm cozy bed. And speaking of that bed, thank you for scooting over so I can squeeze in between you and dad when I feel scared in the night. Thank you for treating me like a regular kid and letting me climb the rock wall and fall down and get hurt even when my platelets are low and my legs are already covered with purple welts.
Thank you, mom, for not forgetting about me, your healthy son. Thank you for making sure I always have fun playdates and for giving me veto power over whose house I go to, no matter how desperate you are. Thank you for emailing my teacher at the last minute so I’m not too surprised by who’s picking me up on unexpectedly long hospital days. Thank you, mom, for waking up early to bake homemade bread for the Teacher Appreciation Brunch. And for running back home to get my library book on library day so I can check out a new one. Thank you for arranging for friends to take me swimming all summer even though Austin can’t get wet. And for sneaking yogurts into my lunchbox so I can eat them away from the watchful and (understandably) jealous eyes of my brother. Oh, and speaking of jealous, thank you for listening with respect and not getting mad when I say I’m jealous of him, even if it makes your blood boil a little. Thank you, mom, for making sure I know that I’m remembered and heard and loved.
And thank you to my mom for always managing to fit in a several-hour visit to the hospital every single day we’re there, no matter how busy you are. Thank you for shooing me away and sending me home even if Austin is screaming in your arms as I leave. Thank you for reassuring me that it will be okay and for always telling me how okay it was when I get back. And thank you for valuing my daily workout as much as I do and making sure I have time to go for a run. Thank you for loving every second you spend with him in your arms and for making it seem like I’m giving you a gift when you’re really doing me a favor.
Thank you, mom, for taking care of me when I’m sick.
And thank you, mom, for taking care of me when my brother is sick.
And thank you, my mom, for taking care of me when my son is sick.