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Team Austin is at it again.

We will be participating in the CureSearch Walk on Saturday, June 4 at wade Oval and invite all of you to join us.  Austin had a sea of red walking alongside him at last year’s unseasonably cold event, a team that was 90 people strong. We hope we can count on that many of you to join us again this year on a much warmer day (it has been moved up a month, so hopefully that statement is true!).

It only costs $10 for adults to register and is free for children, so this is really an opportunity to come out and show support for all the children who are currently in the fight and for those, like Austin, who have come out the other side. This event raises important research dollars but also honors the children and their families who’ve been touched by cancer.

Thirty-six children in the United States are diagnosed with cancer every single day. One fifth of them will die. Half of them, like Austin, will survive but with lifelong health complications as a result of their treatment. Until these numbers improve, our job is not done.

To register, click here. The website has some logistical problems, so follow my directions as closely as possible or you’ll have to jump through lots of unnecessary hoops. After you agree to the conditions, click “Register Multiple People,” which will save you a lot of time. On the next page, click “Join A Team.” Then click the “Select” box next to Select A Group (do not type in the name Team Austin or you won’t be allowed to register multiple people at once). When the team names appear below, click “Join Team” next to Team Austin and proceed to fill out the registration page for each of your family members.

Even though children are free, the organizers do want them to register in order to have an accurate head count. This will also help us reach our team goal of at least 50 walkers.

Walk with us . . . and make a difference.

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The fascinating thing about that last day of chemo a year (and two days) ago was that we didn’t know it was our last.

I remember the day pretty well and I mentioned it in this post. You can see that I never said anything that sounded triumphant or victorious, I never used the words “relief” or “finally,” there was no mention of celebration. We finished on time (and celebrated that small victory), kindly waved to the nurses as they buzzed us out the door, and shouted out a cheery, “See you soon!”

But we didn’t see them soon. Austin spent the next few weeks in the outpatient clinic receiving platelets and blood transfusions, while Mark and I spent the next few weeks researching obscure medical journals, weighing our pros and cons (with the cons always heavily outweighing the pros) and trying trying trying to settle on the right choice.

The right choice eventually found us, thanks to some timely emails from prominent Wilms tumor doctors across the country, and chemo was over without us ever having celebrated that last day. There was no victory lap around the oncology hall, no clapping and cheering from the beloved nurses as Austin completed yet another round. It was instead an ordinary day. We walked out of those hospital doors and, unknowingly, began our ordinary life again.

There’s a victory lap in that.

Speaking of anniversaries, one year ago today Austin had his last dose of chemotherapy, now making him officially “one year out” from the end of treatment. And halfway there.

Well, nothing is official until he has his next round of scans which isn’t scheduled until May 12 because of the difficulty coordinating the various procedures he’ll have done. So if those come back clear, then we can celebrate one year done.

But even so, we’ve never gotten this far before. The first time he had cancer, he finished treatment in February 2008. By that December, we were already watching a suspicious shadow near his left kidney. We then moved what should have been his one year scans back to February, when the shadow still appeared. By the end of March, he had that dreaded needle biopsy which confirmed the shadow was indeed a Wilm’s tumor and the rug was ripped out from under us before we had ever celebrated a full year.

Following that little “episode,” we were again watching suspicious shadows in October 2009, which of course were confirmed as cancer by that December. So, even without having received our official one year all-clear, this is still the farthest we’ve ever gone cancer-free.

And perhaps it is fitting that this anniversary should fall on Easter. Of course it is no secret that I am not religious and the Christian holidays I celebrate are more about spending time enjoying family (and food!) than about any Biblical story, but still, resurrection has a secular meaning too (granted, it’s the fifth one down): a rising again, as from decay, disuse, etc; a revival.  Sounds about right.

Resurrection, renewal, the start of spring, second chances, new beginnings, the passing of the long dark winter, the coming of days filled with sunshine and light. Yup, sounds about right.

Getting ready for their indoor egg hunt

Below is a repeat post, first published on April 22, 2009, describing the day, exactly 25 years ago, that I was diagnosed with diabetes. Twenty-five years of living with a potentially life-threatening disease and, well, so far so good.

April 22, 1986 was a Tuesday. I had just finished last period gym class and was in the locker room with my 7th grade gang of girlfriends deciding whose house to go to after school.  This decision usually involved three factors: whose house followed the same walking route as wherever our gang of boyfriends was headed, whose house had the best snacks and whose mom didn’t mind when her home was invaded by twelve giggling girls. (We did not travel light in those day.)

I, so often the ringleader, shook my head and said, “Can’t. I have a doctor’s appointment.”

“Again? You had one last week! Is this about that thing in your eye again?” asked one girlfriend referring to an unexplained stye the week before.

“No, my mom thinks I have diabetes.” I said this casually because I didn’t really think it could be true. I suppose if I had thought about it carefully enough, as I would years later, I’d have been able to admit that I wasn’t myself lately. I was tired and cold, lacking some of my usual tom-boy-but-girly-girl, jock-in-cute-clothing energy. I didn’t feel like myself. But I still didn’t think I could have that.

“No WAY!” Sarah shouted, suddenly all riled up. “My sister has diabetes. There is NO WAY you have it.”

There, she was clearly an expert. Pit her against my mother and her dog-eared Dr. Spock book. So what if I’d been chugging through the week’s supply of milk by Wednesday? So what if I’d gone from already thin to downright gaunt? Sarah knew what she was talking about.

But I parted ways with my friends and trudged on home where my mom and my six-week-old brother escorted me to our pediatrician’s office. I guess I wasn’t really surprised when he walked through the door, after checking the results of a quick finger prick blood test, placed his hands squarely on my knees and looked me in the eyes. This grandfatherly man, who I’d known all my life, now on the verge of retirement.

“Does diabetes run in your family?”

“Nope.” Still casual.

“Well, now it does.”

That was the first time a doctor’s words changed my life.

He told us to go home, pack a bag and head to Rainbow. All of this sounded fine to me until he said I’d be in the hospital for five to seven days. That was not okay.  Chronic disease or not, I had a school dance to go to on Friday afternoon. And hospital or not, I had a boy to slow dance with.

But–doctor’s orders, so home we went and, while my mom fixed dinner for my brothers, I packed my bag with a phone cradled under my ear, calling as many girlfriends as I could manage. Most were shocked, one cried, my best friend’s brother thought I was kidding. More than one asked, “But what about Friday?” This dance was no small matter.

My dad came home from work early and we headed down to Rainbow Babies’ & Children’s, a hospital that would become my second home more than two decades later. The four of us boarded the elevator — 13-year-old me, consumed with the horrors of missing the school dance, my parents, consumed with the horrors of having a suddenly sick child, and my baby brother, strapped onto my dad’s chest in what we now know is a Bjorn but what they then thought was a “Snugglie.”

Now this next part I don’t actually remember, being as consumed as I was with above-mentioned horrors, but my mom told me about it many years later. The elevator door opened before we reached our floor to let on a boy, just about my age, except that he was in a wheelchair. And he was bald.

You know what they thought. My parents, whose world had turned upside down, who were overwhelmed with shock, fear and worry . . . you know what they thought. It’s what most of us would think.  At least it’s not cancer.   They leaned into each other, in their safe corner of the elevator, and they knew. They knew that we could do this. They knew that we would be okay.

And we were, but I’m not there yet. Minutes later we were settling into my room, answering question after question from doctor after doctor and nurse after nurse and intern after intern. And every single time someone new walked in, my mom would announce, unasked, unprovoked, that I had gotten my first period the week before. Can you say mortified? This could not possibly be relevant! I would scowl and hiss, “Mah-ahm,” turning that simple short word into two truly mortified syllables.

She said it hopefully, as if she actually expected some doctor to throw his clipboard into the air and exclaim, “Oh, that explains it! The ol’ first period-diabetes diagnosis mix-up again!”

No such luck there. Instead I stayed in the hospital for five days, learning how to test my blood sugar and count my carbs and administer my shots. My parents and brothers had to learn too, how to spot a low-blood sugar reaction and what to do about it, what it felt like to give and get a shot. We went around the room, first practicing with saline-filled syringes on oranges and then on each other’s arms. Take that, brothers, who were mostly concerned with whether or not they could still eat donuts on Saturday mornings.

But we all learned and we all made the necessary life changes and we took it in stride. I took it in stride. Right at that moment when I gaining some independence from my parents, diabetes just became another part of taking care of myself. It just became another part of who I was, who I am.

And don’t worry, I didn’t forget: The hospital granted me a two-hour leave of absence on Friday afternoon and my parents picked me up in the minivan and dropped me at my middle school for the dance. I mean, THE dance.

And yes, I got my slow dance.

So what is happening with that book of mine, you ask. Well . . . nothing much.

There are still two agents from the Pitch Slam who I haven’t heard back from, one of whom I’ve pretty much given up on. From what I’ve read of her online, she usually responds fairly quickly and in one interview, she welcomed follow-up emails if she hadn’t responded to a query within five or six weeks. So I sent her one a few weeks ago and still, nothing. She’s the one I mentioned who I would have been shocked if she’d asked to read my full manuscript, so I guess it’s to be excepted. Still, it seems extraordinarily rude to ask to read someone’s work and then to even give them the courtesy of a rejection. I mean, it’s only a measly form letter — it would take thirty seconds to paste it into the body of an email and hit send. Oh well.

The other agent who still hasn’t responded happens to be my favorite of the five. Her agency’s website says right up front that it takes them up to three months to review initial submissions and only to follow-up if we haven’t heard back in six months. Six months! And I thought I’d already done my share of waiting.

That agency did have a very thorough submission form that asked for all sorts of information, from the last book I read to the author who’s most inspired my writing to a single line, one sentence, culled from my submitted pages (not easy!). They also required a synopsis, which is harder than writing a full-length manuscript! Really, in the past, I’ve steered clear of agents who request a synopsis just because I didn’t want to have to write one. This is a two-page summary of the entire book, devoid of any exposition — just straight up, “This happens, then that happens, blah blah blah.” Ugh. Double ugh.

But I do trust that, by requesting all that information, and by warning ahead of time how long it takes her to review it all, that she really will indeed review it all, and that she really will indeed respond. I’ve also read some interviews with writers who’ve signed with her and they all say that she’s much much quicker to respond once she officially represents you and that she spends most of her work day acting on behalf of her current clients and their books, which is a good sign.

So, more waiting and more hoping. If there are only a few things I’ve learned since Austin was diagnosed with cancer, it’s how to wait and how to hope.

I’ve just finished reading My Sister’s Keeper by Jodi Picoult, an author whose books I’ve been disappointed by in the past. Not this one. It’s been out for years now and I was actually encouraged to read it by friends before Austin was even born. Then my mom read it following Austin’s first round of treatment and she encouraged me not to read it, thinking it would touch too close to home.

But I am not one to shy away from delving right into a subject, even a painful one, plus my curiosity was piqued, so I finally picked it up at the library and, well, I’m glad I did. There is something amazingly universal about parenting a sick child. It makes me really really want to get my book out there into people’s hands. Not that it’s some self-help miracle or how-to survival guide. But just that I know it will connect with readers, those with sick children and those without. It humanizes an experience that can be so terrifying and overwhelming that most people would rather just push it out of the way and ignore it. These kind of stories (my true one and Picoult’s made-up one) force people on the outside to see and feel what it’s like on the inside, and I think that’s a good thing. It gives us all a sense of empathy and understanding that wouldn’t otherwise exist.

My Sister’s Keeper is a fictionalized account of a teenage girl who’s had a rare form of leukemia for most of her life. It focuses in large part on her younger sister, who was specifically conceived to be a genetic match in order to donate cord blood and then bone marrow and eventually, as the book opens, a kidney, in order to save to her older sister’s life. (In reality, even a perfectly matched sibling cannot donate a kidney under the age of 16.)

The book jumps back and forth between the points of view of both parents, the healthy sister, the older brother and a few other characters. This is hard to do well, but it is done very very well in this instance. I was struck by the fact that when I was reading anyone else’s point of view, I strongly disliked the mother — she was blinded by the task of saving her one daughter, at the expense of her other children, herself and her marriage. She was overpowering and single-minded and, well, not very likable. But when I was reading her parts, I got her completely. I agreed with everything she felt and most of what she did.

Which is sort of scary, because she made a lot of really obvious mistakes, like completely ignoring the needs and desires of her other kids. She could not see beyond each immediate health crisis and I think the book serves as a serious warning to parents against such a narrow-minded approach to anything.

But, still, I get these parents. They are us and we are them, in so many ways. When faced with yet another pending crisis: “And yet — like always — you figure it out; you manage to deal. The human capacity for burden is like bamboo — far more flexible than you’d ever believe at first glance.”

And this one, as they’re slowly (or quickly, as it turns out) realizing that their daughter has relapsed: “It takes only thirty seconds to realize that you will be canceling all your plans, erasing whatever you had been cocky enough to schedule on your calendar. It takes sixty seconds to understand that even if you’d been fooled into thinking so, you do not have an ordinary life.” Sixty seconds, and, whoosh, you do not have an ordinary life. No matter how badly you want it.

And in one of the many moments when their daughter is on the verge of death and the husband, like Mark has done with me, tries to gently but firmly prepare the wife for what he sees as inevitable. And she says, “She isn’t going to die,” and he says, “Yes, she is. She is dying,”  and the wife responds simply, “But I love her.” Like that’s enough. Like that one little reason, the thing that drives us all in almost every decision we make — how much we love our children — matters at all. It doesn’t matter, not a bit. It is completely irrelevant.

I read these books and I give myself over to them. I feel at once so relieved not to be those parents and so sorry that I am those parents. We are them, even when we don’t want to be. Different outcome (hopefully a better one), different parenting style (hopefully a better one), but we are all the same. We all just want to save our children. Because we love them.

Did I really say that I don’t mind washing the sheets every other day? Okay, fine, I take that one back.

And another thing (this one positive): Austin’s doc said we can ease up on the dietary restrictions, which is obviously great news. Especially since we’ve already been easing up on the dietary restrictions. Now I just won’t feel so guilty about it.

Off to do laundry . . . .

As we near the one year mark since the end of Austin’s cancer treatment, he has a series of appointments, scans and lab work scheduled. Today was a visit with his kidney doctor, our first exclusively with her since early last summer.

All in all, he’s doing very well and is perfectly positioned in the fiftieth percentile for both height and weight. This is a really good sign since kidney disease can negatively impact growth and I was getting a bit worried that he hadn’t been gaining enough weight. Turns out he has stretched from his once chubby short self to a new long lean self (sounds nice, doesn’t it?).

We reviewed his blood pressure medicines and decided to take him off one in favor of another. I’m pleased about this because the one he’ll soon stop is a diuretic, making my four-and-a-half-year old very dependent on nighttime diapers. He pees like crazy between dinner (when he takes that particular med) and midnight, often leaking through his diaper . . . and sometimes leaking through two diapers! Mark and I have considered this as a minor and manageable side effect (I mean, really, if washing his sheets every other day is my biggest worry, I can’t complain much), but Austin himself has been increasingly concerned about needing a diaper. In fact, when he went to his cousin’s eighth birthday sleepover, with boys much bigger than him, he told me ahead of time that he was going to change in a different room so “nobody would see.” Of course, as a parent, making sure your child feels that he belongs and won’t be made fun of is of utmost importance, so I’m eager to try this new route.

She ordered a bunch of labs — the renal panel we usually get, plus some measures of bone density and vitamin health — but we won’t get them done until his next blood draw in a month, so there are no new numbers from today. She did say that based on his recent creatinine levels, his kidney function is around 50% (as estimated GFR of 53). Not bad considering it was below 30% last spring and summer. Of course, there’s no way to know if the kidney will continue to function this well or if we’re in something of a honeymoon phase, but we’ve learned to take what we can get. If it’s the same at the golden two-year mark (when, from an oncological perspective, he would be eligible for transplant), we would not transplant him. Transplants aren’t allowed, or covered by insurance, unless a patient’s kidney function is below 20%. So, hopefully (always, always, everything is tempered by hope), we have a ways to go yet before that step.

Another day, week, month, another appointment, scan, test . . . we have our Austin, he has his kidney, and all is good.

You know, I don’t usually use this site as an advocacy tool, but I probably should given the enormous inequities in funding for cancer research and especially pediatric cancer research. That is a topic for another day but right now, I’m going to simply copy an email that went out yesterday from CureSearch, the nation’s major fundraising arm of the Children’s Oncology Group, which coordinates, conducts and shares all the research and treatments done on childhood cancers among more than 210 hospitals across the country. (St. Baldrick’s funnels its dollars through CureSearch as well to fund grants for member hospitals.)

There are so many reasons to hope that our nation’s leaders are able to reach an agreement on the budgets for this and next year, but for me, right now, today, cancer research is one reason that cuts across all the boundaries that usually divide us.

Hard to disagree with funding research for the more than 13,500 children who will be diagnosed this year. Or for the more than two-thirds of those who will face devastating late effects from their treatment (like Austin). Or for the more than 2,500 who die each year.

Hard to disagree with that.

And now, the official message:

URGENT Action Alert

Dear CureSearch Advocate:
As many of you are aware, there is a lot of Congressional debate around both FY 11 appropriations and the FY 12 budget this week.
Last week, a letter was sent from One Voice for Against Cancer (OVAC) Member Organizations (OVAC is a coalition of Oncology Patient Advocate Organizations) to House and Senate leaders. The letter urges House and Senate leaders to work together to restore the funding that was cut in the original proposal H.R. 1 for programs involved in the fight against cancer.
As of today, Congress and the Administration are at an impasse on FY 11 spending. If no deal is reached by Friday, government operations will shut down. This would impact cancer research and prevention programs in the following ways:
·         New patient enrollment in clinical trials would be discontinued;
·         No new grants would be awarded;
·         Patient information hotlines, such as 800-4- CANCER, would not be staffed;
·         CDC grants would not be awarded; and,
·         Additional health care family services might not be staffed
The latest rumors about the negotiations suggest that the Democratic and Republican parties are still several billion dollars apart and that there is also disagreement over the policy riders that are in H.R. 1. Based on the current state of play, the NIH would be cut by a smaller amount than what was included in H.R. 1. The funding level for the CDC would be comparable to the level provided in H.R. 1.
We urge CureSearch Advocates to call members of Congress with the following message. Members of Congress should be asked to encourage their leadership to complete their work on FY 11 and to reject cuts to NIH cancer research programs.
The House Budget Committee is marking up its FY 12 Budget Resolution this week. The mark-up is expected to last until midnight. Many amendments are expected to be offered by members on both sides of the aisle. It is expected that at least one amendment will be offered to protect NIH funding. More information on this amendment and the committee mark-up will be provided as it becomes available.
To contact your Congressional Member visit the CureSearch Advocacy Network
Suggested talking points:
While progress has been made in the fight against children’s cancer, there is still much to be done. We recognize the difficult fiscal choices confronting Congress in today’s environment, we nevertheless urge Congress to provide NCI and its children’s cancer research programs with the support necessary to maintain and expand the gains made in recent years. Please continue your support for NIH and the critical role it plays in developing and maintaining treatment options to cure children’s cancer.
The pediatric cancer research enterprise has made great strides in the last 40 years by increasing the overall 5-year childhood survival rates to 78 percent, but our work will not be complete until we reach 100 percent. In fact, the mortality rate for some solid tumors and rare cancers has changed very little in the last decade. Cancer remains the leading cause of death by disease for our nation’s children, claiming the lives of approximately 2,500 children each year. When measured in life years lost, this devastation is even more dramatic. Further, the treatments used to save children’s cancer patients are highly toxic and can have serious long-term health consequences. Approximately two thirds of all childhood cancer survivors will experience a late-effect from their treatment, some of which are severe or life threatening. In short, we need more effective, safer therapies for our children to give them longer, healthier lives. Reduced funding will halt progress and squander advances.
Children’s Cancer Facts
·         Each year, 13,500 children are diagnosed with cancer.
·         Children’s cancer affects all ethnic, gender and socio-economic groups.
·         The average age of children diagnosed is six.
·         More than 40,000 children undergo treatment for cancer each year.

Mailing Address:
CureSearch for Children’s Cancer
4600 East West Highway
Suite 600
Bethesda, MD 20814
US

Contact Name: Cynthia Duncan
Telephone Number: (240) 235-2212

Soooooo, today was kindergarten registration day at Fairfax.

My PTA job doing outreach to the incoming kindergarten families required that I be there for the entire two-and-a-half hour event this evening. I oversaw an art project for the kids who came along with their parents, took families on tours of the building, and answered lots and lots of questions.

But I did not register my own child.

Of course, it’s not too late. I have all summer to register him at the Board of Ed should we change our minds. But for right now, as of this particular day, we will not be sending Austin to kindergarten next year.

Is it the right decision? Who knows. But I do know that it’s not the wrong decision.

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