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OK, we’re getting down to the wire here. The CureSearch Walk is this Saturday morning, starting at 9:30. (I think I said earlier that it was 9, but now you can get an extra half hour of sleep!)

We have a slowly growing team, now at 20-plus people. Not quite the 90 we had last year or the 50 I was hoping for, but I guess that’s what you get with a mostly healthy child (I won’t complain). If you still want to sign up, here’s the link. Once you agree to the waiver, click “Join A Team” if you’re an individual or “Register Multiple Walkers” if you’re a family. Then scroll through the team list to click Team Austin and proceed to register. They do ask for children registered, even if they don’t have to pay the fee.

The event should be quite fun: they have the Cavs dancers and Moondog there, plus face painters and jugglers and other kid-friendly activities. Plus the weather is supposed to be fabulous, which will be a welcome change over last year. And the kids always love to visit with the mounted police that roam Wade Oval. (And it will get the rest of us in the mood for Wade Oval Wednesdays … as if we weren’t already!)

If you’re coming, try to wear red, Austin’s favorite, to show team solidarity.

And if you can’t walk (or even if you can), you can also join our Kick It kickball teams for the June 10 Chagrin Falls event. Click here and then scroll down to Team Austin for 7-9 year-olds or Team Austin for 4-6 year-olds and click “Sign Up.” That registration process is super fast and easy, so you don’t even have to put it on your list of things to do later — you can finish it in the next 90 seconds.

Click, join, donate, walk, kick … make a difference.

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.

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.

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

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

I just wanted to let you all know that we have moved both boys from the Chagrin Falls St Baldrick’s event to the one at A.J. Rocco’s. Although it’s not the ideal place to bring little kids, it is a much better organized event and the boys have opted to shave with their daddy, all three on the stage going bald together.

We’re gonna pull Braedan out of school a few minutes early that day and make sure the kids can be shaved between 3 and 4, before the post-parade crowd hits. They will then go home with their aunt and Mark and I will stay downtown for the rest of the event and into the evening, so we still hope many of you will be able to join us and cheer them on or celebrate with us afterwards.

So, I repeat, we will not be at the Chagrin Falls event on Sunday, March 20.  There are a fair number of young people participating at A.J. Rocco’s this year and a grand total of over 110 brave shavees. I think doing it this way will help make the event more special to the kids and having Mark right by their side will hopefully quell some understandable fears.

And again (hint, hint), here are the links to their individual pages: Austin, Braedan and Mark.  The boys have almost reached their goals and are very excited and proud of themselves. I’m still somewhat ambivalent about Austin being bald again, but know this is a wonderful and selfless thing for him to do.

I was reading through some of the pages on the St Baldrick’s site the other day and there’s a team in Cleveland shaving in memory of their grandfather, who recently died of cancer. Obviously, he didn’t have pediatric cancer, but they said that people were always asking him what the worst part of treatment was, chemo or radiation. His response every single time?

“The worst part is sitting next a child in the waiting room.”

OK, I will let the kindergarten discussion rest for a bit. But I do thank those of you who’ve shared your experiences with us. It has been extremely useful to hear about the decision you each made, how you reached that decision and what the consequences were.

But now, it’s time to focus on the most important — and much more fun — event of March (besides the much-awaited arrival of spring!): St. Baldrick’s!

Two weeks from today, Mark will be shaving his head at A.J. Rocco’s (816 Huron Rd) along with 92 other shavees, including more than a dozen women (better them than me, that’s for sure). If you’re able to get off work early or have someone to watch your kids, we’d love to have as many of you as possible join us that afternoon.  Shaving starts around 3, following the end of the parade.  Some children do attend that event, but it is definitely a crowded bar experience on a very drunken day, so plan accordingly.

The boys are shaving their heads the following Sunday, March 20 at the Greenville Inn in Chagrin Falls (7150 Pine St). They are scheduled at 3pm if you are able to come and cheer them on (this one is definitely more family-oriented). They are both excited and a little bit nervous, so friendly faces might help.

And, of course, it’s not too late to give. So far, you’ve all done a beautiful job of keeping Braedan and Austin‘s donations perfectly even (an extra thank you for that).  I know you’ve all been very generous in the past so I hate to make too hard a sell but I cannot say enough good things about the St. Baldrick’s Foundation. They give more money to pediatric cancer research than any other organization in the country besides the federal government. Research that is absolutely vital to saving the lives of our youngest patients and to helping them live those lives with the fewest long-term complications. Just think of how different his process would have been for us, so far and into the future, if Austin’s cancer had been the only thing we’d needed to worry about. More research is critical.

So, again, I thank you on behalf of all my soon-to-be bald boys. Oh, and by the way, who’s brave enough to join Team Austin???

Less than a week until St. Patrick’s Day — that holiday devoted to green beer, shamrocks and bald heads.  Team Austin is now nine shavees strong and, as of this posting, has raised more money than any other team in Cleveland. We’ve just increased our team goal to $15,000 and Braedan’s individual goal to $3,500, having surpassed numerous less ambitious goals.

A huge warm thank you to everyone who has so generously donated so far. Braedan is extremely proud of himself and duly impressed by the sum of money his head shaving has generated. And it’s not too late! You can continue to wow him with your support through the rest of the week and beyond by visiting his St. Baldrick’s page here.

As for the event logistics, Braedan will shave his head this Sunday at 2pm at the Chagrin Falls Township Hall. This is the family-friendly alternative to the downtown event next Wednesday. Austin had labs this morning and was cleared to attend with us, which I am very pleased about. Feel free to bring your kids out and cheer on my brave boy if you’re free.

Then on St. Patrick’s Day, Mark and I will go to A.J.Rocco’s for the “adult” version of the head-shaving.  It’s not quite as racy as that sentence makes it sound but does involve considerable amounts of Irish ale. It’s a great event and we’d love for as many of you as possible to join us. The barbers start shaving at 3, following the end of the parade, and it lasts for a few hours. We usually head out for a bite to eat afterward at the Winking Lizard across the street.

It’s quite impressive to see the number of bald heads (usually spray-painted green) in the crowds milling about. They don’t all know us, those brave shavees, but they are doing this for us nonetheless.  And that’s really something.

Alrighty, so now that I’ve gotten really technical and given you all so much information, there seem to be a lot of questions. This is what happens when I share the story in real-time — I can’t just make sweeping generalizations about it after the fact, but instead drag you all through each seemingly contradictory medical moment. So I’m taking today to try to answer some of the questions I keep hearing over and over. Feel free to post additional ones in the Comments section and I’ll do my best to come up with regular-person answers that don’t require years of med school to understand.

Why is it so good that this isn’t a recurrence (if this indeed isn’t a recurrence)?

This is the big one I keep hearing, which I think I mostly answered in Monday night’s post, which was all about survival statistics. Basically, if this particular cancer comes back once, it then has a tendency to come back again and again. Sooner or later, it would just be too much to successfully treat, either because you’d have used up all the chemo drugs (many of which have maximum lifetime doses), or because once you’ve radiated a certain spot, that same spot responds less well to radiation again, or because there are only so many times can you open up a child’s body and manipulate his insides to do a surgical resection.  So it is much much better if this was just a little “leftover” cancer from the first round, which now we can think/hope/believe we’ve completely removed.

Can we be certain if this is a recurrence or not?

No! Ah, modern medicine . . . there are so many more unknowns than I ever imagined. But I talked about this in the last post and again below. And it doesn’t actually change our course of action moving forward, but would change the way we feel moving forward.

What does “chemo-resistant” mean anyway?

This is tricky and hopefully not too dreadfully boring but here goes — Wilms’ tumors are made up of three types of cells: cancer cells, muscle cells and lining cells (which all have fancy medical names). Most Wilms’ tumors are primarily cancer cells, with some muscle and lining thrown in for good measure. Austin’s tumors, on the other hand, were almost entirely muscle, upwards of eighty percent.  (I am talking about the original tumors from back in August, September and October of 2007, by the way.  I’m not trying to confuse you even more!) Chemotherapy drugs are designed to target and kill cancer cells. So only a very small percentage of Austin’s tumors responded to the chemo as expected. There was some chemo-induced shrinkage but it was only on a tiny portion of the tumors, while the muscle cells were growing or multiplying or differentiating so rapidly.  This is both good and bad. Good because the tumors weren’t all that cancerous (cancer is, after all, a relative term). But bad because the growth of the tumors was so very dangerous, not because they were cancer but simply because they took up so much damn space in his small body, pushing aside his right lung and causing his blood pressure and heart rate to skyrocket. 

So once we realized that his tumors had this rare rhabdomyomatous differentiation, why did he keep getting all that chemo?

Well, this one is a even trickier. The best answer is because we just weren’t entirely sure what we were dealing with. There are very few cases of kids with tumors quite like this and I think that, into the future, Austin’s case may actually change the protocol for kids across the country with this variation. The very fact that his tumors didn’t respond to chemo is part of why we can now say that tumors with rhabdomyomatous differentiation don’t respond to chemo!

Also, and this is important, there is a tendency to over-treat pediatric cancer patients instead of undertreating them. When doctors and parents have a child with cancer, they do whatever they can to get rid of that cancer, even things that are potentially harmful. Cancer treatment is dangerous, both in the short-term and certainly the long-term. Many cancer patients die of their treatment, not of their disease, which is sort of stunning when you stop to think about it. They die from the medicine, such high doses of chemo destroying their immune systems so that when they get some random virus their bodies simply can’t fight it. Chemo is toxic after all. And both chemo and radiation lead to secondary cancers. But this is stuff we parents don’t have the luxury of considering until after the fact. And doctors desperately want their patients to be cured of their cancers, to live, and they want to do it without causing harm, but the research simply doesn’t exist yet to support how little you can do and still have a favorable outcome. This should be the next frontier in research —  how can we treat one terrible thing without causing another?

Jeff has said to me many many times in the past nineteen months, “We could probably treat Austin’s cancer with a chisel, but all we have is a sledgehammer. We know the sledghammer will work and so we use it. But we also know it will cause all sorts of peripheral damage.” But what choice do you have?

So Austin had eight months of chemo, just in case. Did it work? Who knows? This little tumor we just removed had been treated by chemo, which means (as I said the other day), that the cancer parts of it were destroyed but the muscular parts still grew, albeit much more slowly than the original tumors.

Geez, I just read this through and am really hoping it helps and doesn’t hinder!

So, what now?

Not much apparently. Definitely no chemo and probably no radiation, although the final verdict on that has yet to be made. I do know we’ll do another CT scan in three months, and, if that one is clear, we’ll get back on the every-six-month schedule.  So ultimately,while Mark and I have increased worry, the boys’ lives should not change. Braedan will still be allowed to have friends over, Austin can still start preschool in the fall (something he begs for every day when we drop Braedan off), we can go on family outings to places filled with kids and germs and fun. Life goes on.

The clock, though, has been reset. You may remember that, because Wims’ tumor recurrences tend to happen within the first two years, a child is not considered “cured” until they are two years from the end of treatment, which would have been February 2010. Now we set our sights on February 2011, so mark your calendars.

And finally, the most difficult question of all to answer: How about a family picture that shows all four of you?

The best I can do are these from our trip to Jamaica in January, when we took the boys to a petting farm for a pony ride and they absolutely hated it. You would have thought we were making them swim with crocodiles or something, there was so much crying it was actually funny. So enjoy . . .

Feeding a goat, oh horror of horrors!

Feeding a goat, oh horror of horrors!

And a pony . . . still no smiles

And a pony . . . still no smiles

Braedan couldn't even bring himself to look at the camera

Braedan couldn't even bring himself to look at the camera

Oh the cruelty! (and I'm not talking about the horse)

Oh the cruelty! (and I'm not talking about the horse)

February 2020
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February 2020
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