Why do you Relay?

There are many foundations out there. They choose where the money you raise for them is used and how. We all have choices. I choose to give my energy in a few places. This is just one. A really good one. CureSearch is essentially COG; Children's Oncology Group. Google, oogle  and smoogle..this is where it counts people.

I don't.

I did.

Once. I knew I wanted to raise money for childhood cancer research and make others aware of how many people cancer effects. Young and old Survivors, caregivers abound. But Then I started poking around and found out that Relay; American Cancer Society gives our bald children 3 pennies to split between ALL PEDIATRIC CANCERS!!! So I looked further into other "areas" for us to push efforts towards.

So, why would you Relay?

We can raise some serious dollars in the name of our children by CureSearching. Yes, CureSearch uses 97 cents of every dollar raised for research and education for our hairless babes. WOW. Overcompensating for something? Naw, it's what should happen in the case of the ever rising cases of pediatric cancer each year. You know, the #1 cause of death by disease in children. And if we don't fund the Children's Oncology Group, who will?

Don't ask the government. I mean you can, CureSearch does with many parents beside them in DC every year, but they are all tied up at the moment, spending money on deciding which program to cut next.

Ask your friends, family and your fb world. Ask your church, schools and the strangers that come to your yard sales...put up signs, create a collection jar at your home events or parties...I'm sure that jar will be full at the end of the night, just like bellies of your guests that are eating your delicious food and being entertained free of charge.


If you are into playing a good game of kickity-kickball, CureSearch has that to offer too. If you have children in school, approach your child's teacher with this. Good for school going kids of all ages. Yes, you hipster college young adult, working hard to bring it back old school, you can tell your parents "it's for a good cause" and mean it.



For the outdoor enthusiasts, there is even a full day hiking event. Two of us Red Dye Moms are going to raise money for an Ultimate Hike over the next few months, for an October event. Yes, we're taking bets on who can make it further. There is the "baby hike", which is half of the 28.3 mile Ultimate Hike. I will probably have to hang up my flops and find something to support my ankles, but this girl could use a great reason to buy a new pair of boots. I understand the day prior and the day after is a bit of a food party. I'm in, in innedy-in. And if you want to place a bet on your horse, we'll post a link in the near future for the two mamas putting on their hiking boots and packing their granola for the bald babes.

Living in the Middle

You met me at a really strange time in my life.

I'm not in the throes of it all, but I'm not so far away that I can't still smell it wafting through the air. I don't know if I'll ever get that foul stench off my jacket.

I'm living in the middle, but it's hard to walk that tightrope.

I keep making plans for the future. The distant future. The future where our kids will have to fill out their own medical histories and will have learned to spell all of those things that once coursed through their veins. The future where there are graduation parties and weddings and grand babies.

The future where they take us, old and fragile, to the doctor. The future where they plan our funerals, and not the other way around.

But part of moving ahead is knowing where you've been, so I can't let myself get too comfortable daydreaming.

I don't want to think about it coming back, but that doesn't stop my mind from going there. The further out you get, the chances of it returning go down. But that isn't much comfort for the parent whose child happened upon it in the first place. Chances were slim back then, too.

There's only one thing I know for sure: no amount of shampoo is going to get that smell out of your hair.

All Aboard the Donut Ride

Dumbledore shares with us the difference in perspective between mother and child on scan day.

Little Warrior, age 5, is very excited about tomorrow. She has tried on several outfits, discarding those with metal snaps or metallic glitter, trying to find just the perfect one for her outing. “I need to have a snack before I go to bed,” she reminds me. She’s giddy. She can’t wait. Tomorrow, she gets to go on “the donut ride.”

Looking through my eyes: tomorrow, we will get up at the insane hour of 5 am and drive down to the hospital where we have spent a significant amount of time and money over the last 5 years. Tomorrow, Little Warrior will be NPO – no food or drink. Tomorrow, Little Warrior has scans, and an echocardiogram. Tomorrow, she’ll have a needle jammed in her arm, and will have to drink 3 cups of contrast. Tomorrow is the first time she’s gone a whole 6 months between scans. Tomorrow, our lives could completely change. Again.

Looking through her eyes: tomorrow, we’ll get up early and drive to where she’s had a lot of fun, and see people she really likes, like Dr. M. She’ll get to drink 3 cups of Sprite, and watch tv, and then she gets to go on the “donut ride,” that slides back and forth. She’ll get lots of praise, and stickers, and probably even a little toy, because she’s so good at doing things like being still and holding her breath. And when they put the iv in, she’ll get to show them how she doesn’t even flinch! Doesn’t even say “ow!” And then we’ll go get a real donut, and chocolate milk. And then she gets to lie in the dark and watch the Disney channel while someone slides something across her chest. And THEN, we get to go to the cancer clinic, and sometimes there’s art people there! Or musicians! And all the nurses will talk about how much she’s grown. And she’ll get to see Dr. M, who will want to know about how’s she’s been. She’s so excited, she’s planning on sleeping in her shoes.

Cancer Parents, this is for you. We have so much to worry about. But you maybe can mark “crush her spirit,” or “make him fearful,” or “traumatize them,” off your list. This is their journey. And hopefully, they look at it with different eyes than we do.

We are happy to report that Little Warrior is still NED!

The Great Debate

This month, Kristen LaBrie was sentenced to 8-10 years in prison after she withheld medication for her son's cancer, resulting in his death. This story has gotten us all thinking, "What would WE do in that situation?" There are many answers, and the following are two opinions from both sides of the fence. To read more about the LaBrie story, click here.



I just have to share this with a group that would understand the angst I feel. There is a current courtcase that issued a verdict of guilty to a mom who withdrew meds for her son with autism who was also fighting non-Hodgkin’s lymphoma. He was given an 85% chance of recovery and had obtained remission before she withdrew drugs. It relapsed and her son died. I feel the same way reading this article that I did the first time I took Josh to his first burn clinic evaluation. Josh was severely burnt at 15 months, and it was his treatment therapy that allowed us to discover his tumor, before it metastisized. (Talk about a mixed blessing.)

Anyway, after severe burn and skingrafting, you are given very strict orders when released from the hospital, including not going out in sunlight as the tender skin will burn quickly and seriously. At our first visit, we bumped into a boy who was in the next room...whose screams at night brought me to tears. His mother ignored the instructions, let him go to a Memorial Weekend picnic - all day - and the burn that resulted was actually worse than his original one.

This mother with the son with lymphoma was given an 85% chance of life for her son, something I would have dreamed for my son. Instead we were told "numbers don't always hold meaning when we are talking about kids. Even if he only had a 1% chance at survival, we will assume he is that 1% unless his body tells us otherwise." It was a gift from God to have that attitude, but what that didn't say was that my son actually only had a 15% chance to survive.

To also be given the term remission seems like a second Godsend. I remember how odd I felt given the term no evidence of disease. Yes, it was a great victory to be told we can't see anything. But it is an odd sense of relief mixed with worry about what if they can't see it? Remission always felt like such a stronger term...I always envied people who got that stronger statement of success.

For myself in the end, I think the emotion I feel is just such a strong sense of sadness for this child. Regardless of the side effects, regardless of the difficulty, I resigned myself immediately to the idea that I didn't get the luxury to worry about side effects, discomfort, etcetera. Lack of treatment equaled death. My son had to be alive to experience his side effects.

I remember the two hours I cried when we learned of his moderate to severe hearing loss. My wonderful audiologist allowed me to stay in her office saying "you can stay here for awhile and grieve his hearing loss before you re-enter the world of a mother of a cancer patient fighting for his life."

And afterwards, when the accutane caused issues with his sight and I was saying My son can't be hard of hearing and blind if he survives to the doctor who oversaw the therapy. The worries were severe. But even then I never considered stopping treatment; this was the only proven therepy at the time for neuroblastoma. In the end, despite being the side effect kid he proved to be, the sight returned, and our doctors decided on a great course of action that was awesome for us.

I guess in the end, I credit my ability to stay in very close touch with my specialists, and communicate all of my worries. We found the best options possible, and accepted the rough road we had. I realize that my responses are only one of many, and not all parents are as lucky. I respect all responses, because this world of cancer is a god-forsaken place for anyone. It is hell on earth. But it makes me so sad for these kids when the chances are in their favor to survive and thrive, and other choices are taken. It makes me cry for these special angels. In the end I hear myself whispering to this mother If you only could realize how lucky you were, you wouldn't have been so careless. It's not fair to say I know, just honest. And I cry for myself, for
having been in a position to make such a statement. And grateful to have my son asleep, curled up with our dog. I must give him an extra hug when he awakes.

-Mary Beth Collins


My perspective on this is a little different.

My healthy child was diagnosed with NHL at 4 years old...I was quoted similar 'rosy' survival rates straight off the protocol. But our oncologist never bothered to delve into the prognosticators specific to my child - like skin and medastinal involvement and LDH>800 (Tommy's was 1600+ at Dx). If he had, the odds of curing my child with that protocol would have been much, MUCH lower. This was something I discovered when we were blind-sided by a relapse 9 months into the 1-year protocol.

What I wonder is how could severely, non-verbal autism and PDD have played into the 85% cure rate?

And I remember cajoling, begging, bargaining, pleading, and waking my child up in the middle of the night to give chemo... It was very hard at times- and my child was very reasonable. I wonder what it would have been like if he had been developmentally delayed and perhaps fought me every step of the way?

They said she completed the first 4 phases of treatment, but she failed on the 5th maintenance- sometime in the 2nd year. What happens in maintenance? The visits reduce to once every 3 weeks for the 'big' chemo by IV and you go home with mountains of very expensive oral meds that you have to organize and schedule like a nurse. Not an easy task, especially for someone without medical training.

For me, it was a little over a year into chemo when I finally realized that the goal of the multiple years of chemo was to walk the fine line between killing the cancer and killing the child. When it dawned on me that they WANTED his counts to be continuously low, I started joking with the nurses when we would go to the hospital for chemo "Hey, he's feeling great, his counts are good, it must be time to hit him again!" It was the sadistic truth of what we were doing to my child.

Maybe this woman heard "remission" and thought everything would be fine. She said he "looked better" when he wasnt on the meds. Well, of course he did! Maybe the steroids made his autism worse, do we know? Maybe the mother didn't understand that the purpose of the prolonged and repeated torture by chemo was to keep the beast at bay? And how the heck did the doctors go by that long without noticing that the child's counts were probably higher than they should have been???

Or maybe she just had to decide between dinner for her family vs. $20/pill for Zofran.

I think the media has presented a sensationalized version of the facts and I have more questions than answers. Before you applaud the judge for throwing the book at her you might want to consider what this verdict does to YOUR rights as a parent.

And before you throw her into a nuclear reactor you might want to walk a mile in her shoes.


-Holly McCrea

What would YOU do? Feel free to email us at reddye48@gmail.com and let us know your thoughts.

Holly Takes on Washington

Holly Schwab is mom to Zach, neuroblastoma survivor. She runs Zach's Toy Chest, which provides new toys to kids in the hospital. This year, Holly and Zach stormed Washington. You can follow her family at Holly's World.

So I decided to take Zach to Washington DC for our first Childhood Cancer Awareness and Advocacy Day last week. Boy did I underestimate what I was in for. First off I was completely caught off guard with my emotions when I arrived at the information session on Wednesday. For some reason I thought the group of parents participating would have their kids with them - I was wrong.

Our family seemed to be in the minority because Zach had survived his battle with cancer. Good thing I had packed my tissues, because after listening to several speakers talk about their kids who had passed and why they were doing what they do now, it was tough to hear. Then I thought about what a wuss I was sitting there crying when I still had my kid 3 doors down playing with the 1 or 2 other small survivors that had come to DC. It was time for me to suck it up and pay attention to the detailed statistics the speakers were telling us.

Stats such as pediatric cancer research being considered a "discretionary program". Say what? Since when did finding a cure for cancer become optional? Maybe if their kids had cancer they would see it differently - but that isn't something I'd wish on my worst enemy(if I had one).

We reviewed 4 main reasons as to why we were in Washington:

1. To ask our Senators and Congressional members to maintain funding or fiscal year 2011 and to increase funding in 2012. We asked this because each year 13,500 kids are told they have cancer and more than 40,000 kids undergo treatment for cancer each year. There are more scary facts that we laid out to our representatives too. The impact of not maintaining for 2011 and increasing for 2012 is that kids with cancer will not have the best treatment options and will suffer from the lack of research.

2. For our Congress members to join the Congressional Pediatric Cancer Caucus and be a Congressional champion for legislation benefiting children with cancer. All Congressional members need to be part of this caucus since it is bipartisan, creates awareness and educates our members. If we as parents to a child with cancer didn't know this information, how do we expect Congress to - unless we tell them?

3. We need Congress to cosponsor the Creating Hope Act to encourage drug development for pediatric cancers and other rare pediatric diseases. This legislation has bipartisan support and does not require an appropriation. This Act was introduced the morning we hit Capital Hill and there was no better timing. This Act doesn't require any money from taxpayers - at all! What it does do is generate market incentive for drug development through a "golden ticket" - a priority review voucher for pediatric rare diseases. Under this program, a company that develops a drug for pediatric cancer and receives FDA approval for that drug also receives a voucher. That voucher comes with rights to a faster FDA approval for any other drug (like another heartburn or allergy medication), which results in the drug getting to market 4 months earlier. These vouchers are worth hundreds of millions of dollars...I think that may be the incentive these drug companies need to help our kids. Whatever works people! I happen to think this is an ingenious idea and wish I'd thought of it myself.

4. We also asked for Congress to cosponsor and adopt the "Childhood Survivorship Research and Quality of Life Act" formerly HR2109, which is scheduled to be re-introduced later this year. This one is a biggie because now that Zach has survived childhood cancer, he faces many late side effects. 3 out of 5 kids who survive cancer suffer horrible late effects such as secondary cancers, muscular difficulties, infertility, heart failure, kidney damage, hearing loss, memory loss, permanent low immune systems, develop autoimmune diseases and a host of many, many more. As a direct result of research done up to this point, we've got loads of kids surviving each day. This means we need research done to help the survivors. Right now we're at a standstill - I've survived cancer...now what? We need to figure out "what" and allow our kids to grow old and change our diapers when we're as old as...I don't want to think about what that age might be.

Thursday morning came and as I found myself to be nervous...no time for that - got to get my big girl panties on and get this show on the road! We rush to get to the hotel in time to make the shuttle (which we make only by seconds and have to ask them to hold it while I go park and run through the parking garage like a mad woman with an empty stroller. Zach and Mama got put out on the curb so they wouldn't break a sweat.) We arrive at Capitol Hill and start our hike to the first meeting of the day. We heard a 12 year old boy do a speech about how he survived cancer 2 years earlier and was here to help us sway our Representatives to see our point of view. This kid was amazing. No other words.

We move on to our first Senator meeting with Richard Burr's office. This meeting was so weird. It didn't really seem to have a 'start'. The aid we met with, Jennifer Nardi, met us and just sort of looked at me to begin...and I choked. Had no idea where to start. Where was that lady in our group who said she'd start and end for us in the meetings? She was late, that's where she was. I managed to get through a jumbled start and thankfully another set of parents picked up the message for me and we were able to get all our points on the table. I got the impression Jennifer Nardi was not interested in our group or our message. However, we made her sit there and listen anyway. The other family in the pic is Christy Griffith, Eve and husband Matt. Eve had a different cancer and was treated with the same chemo drugs as Zach, as was a older survivor of leukemia (29 years survived!)...see the need for more research yet?

Then we were off to a good lunch of chicken strips, fries and cheese pizza. Those were some good chicken strips - worth all that walking back and forth all day! We went to Congressman G.K.Butterfield next and met with his aid, Meredith Morgan. She was full of energy and I felt like we really had her attention in this meeting. She took notes and even asked questions we were able to answer. Made me feel a bit smarter up on the Hill.

*Update* Meredith sent an email letting me know Congressman Butterfield was on our side.

'I really enjoyed meeting you all today. Thank you for taking the time to come all the way up to DC.

I passed the information on to Tonya, our chief of staff, regarding what we discussed and she is going to review it tonight. Also, I read your children’s stories and I am so sorry. I can only imagine how difficult that is to go through for everyone involved.

I know our office is behind funding the best cure for pediatric cancer. The one piece of news I already have is that we are in support of funding NIH at the current level. We just signed a letter today in support of funding NIH at $32 billion (the President’s proposed FY 2011 was at 32 billion but as I am sure you know ,there has been no final vote for FY2011 by congress. FY2010 for the NIG was 31 billion) .

Please know that our door is always open.'

I have since written her back reiterating our message and thanking her for the support.

After this meeting, we had some time to kill so we took our time getting to Senator Kay Hagan's office. I took some random pictures during this walk...

What's the 1st thing you notice in this picture??? We were lucky enough to be stopped twice that day for the President coming and going down the street...whoever this guy stops wouldn't be what I call lucky.

I really took notice of all these damn stairs around Capitol Hill...maybe it was because I had a kid in a stroller to lug around all day...what do handicapped people do here? I finally found a ramp at one building at guess what...it lead me to the base of some steps.

This certainly explains a lot about people in Washington...

Zach's new friend and partner in crime, Eve.

So we arrive at our last meeting of the day, Kay Hagan's office, and we're prepared to deliver our message to Senator Hagan...but she is a no show (she had to run home to NC). We ended up meeting with a competent aid named, Tracy Zvenyach - who is also a nurse and had a great working knowledge of what we were talking about. Another Mom that was there brought an email from Senator Hagan's office to attention and promptly told the aid that the letter was wrong - all the info Senator Hagan wrote about was for adult cancer - not childhood cancer. We hope the Senator has been informed of the error and will now cosponsor our Acts so she'll be more informed in the future.

We were very fortunate to have an adult survivor of leukemia. She has survived 29 years and actually had been treated with the same drug Zach was, as well as Eve - and they all had different types of cancer. She shed TONS of light on why research is needed for the survivors too.

The kids were wild by 5pm. This poor girl looks like she was ready to make a break for it when we left! At the end of the day I think we really made an impact on Capitol Hill - for better or worse, we made one. I ask that each and every one of you write to your representatives and ask them to maintain the budget for the rest of this year and to increase it for next year. We need the research. Simple as that. I'll update about responses I receive as they (hopefully) come in. Thanks for your support and encouragement. We need it!

Wigging Out

With St. Baldrick's season in full-swing, it's important to know where your hair donations are going. Dumbledore has just the facts, ma'am.

Why I Don't Support Locks of Love

Okay, I've been meaning to write this post for a couple of years, but it seems like someone has always just cut their hair and donated it to Locks of Love, and I really didn't want to offend anyone, or make them feel bad.

Buck up, Dumbledore. Tell 'em how you feel.

I love the idea of donating your hair to a charity. It's something so meaningful -- you're donating a part of yourself! And we girls, well, we've been raised on this notion. It's Della in Gift of the Magi and Jo in Little Women. It's putting someone else before your own vanity. It's lovely.

My problem with Locks of Love is that I think most people who donate are doing it under false assumptions:

a) Their hair will be used to make a wig
b) Their hair will be used to make a wig for a child with cancer
c) Their hair will be used to make a wig for a child with cancer, donating it to them for free

Now then:

a) Chances are good that your hair is either sold to a wigmaker or thrown away. (I read somewhere, but sorry, can't remember the source, that most American hair isn't good for wigs because we wash it all the time, use hairdryers, etc.)
b) The primary purpose of Locks of Love is children with alopecia. They donate their wigs to children with permanent hairloss, not the temporary loss caused by chemotherapy.
c) Not necessarily. For many, they are sold on a sliding-fee basis. One sends in an application, tax returns, medical diagnosis and two letters of recommendation.

Unlike some, I don't consider Locks of Love to be a scam. If you donated, you did a good thing. Children with alopecia deserve something that will make them feel more normal. (Although, maybe it's the Universalist in me, but I have an issue with requiring two letters of recommendation just for something to feel like you're a normal kid. But that's me.)

My problem is that there is a wide chasm between what people think Locks of Love does and the reality. Verisimilitude! This is one case where you can "blame the media" who don't even do the most basic investigation -- I mean, most of this information is on Locks of Love's own website. But the media continue to promote misinformation, such as in this article:

"...he and several members of their Unitarian congregation decided to grow their hair for Locks of Love. The nonprofit organization provides wigs for children who lose their hair during chemotherapy."

So, if you have long hair and you specifically want to help kids with cancer, what to do? Well, I have some answers.

1) Donate it to Wigs for Kids.
2) To donate it for an adult going through chemo, donate to Pantene's Beautiful Lengths.
3) Best yet: Sell it and donate the proceeds to CureSearch.

A Consult in Port Charles

Dumbledore is back and she's scratching her heads with the rest of us about the new General Hospital storyline.

In amongst a very busy week, I have also been watching a soap opera. A soap opera I’ve never watched before – why the heck would I do that?

You guessed it. Wilms tumor.

Despite being the second most common type of childhood cancer, Wilms is considered rare. Most people have never heard of it. I certainly hadn’t. It’s a shibboleth. If you know the word Wilms, either your kid had it…or you’re a pediatric oncologist.

So, most of us learn to say “kidney cancer” when we’re talking to “civilians” in the war of childhood cancer.

Well, on General Hospital this week, they actually used the word. I heard the buzz, so I checked it out.

Which is worse – no information about Wilms out in the world, or wrong information?

Hey, it’s a soap opera. I don’t expect to see 6-24 months of treatment, or the moment when you realize that the reason your child looks so … different … is because they’ve lost their eyelashes. I don’t expect to see the mom making a 2000 calorie milkshake in a pathetic attempt to add some weight to their kid.

Even the most dramatic – and completely unrealistic/wrong/stupid part of the story arc – didn’t faze me. Another child is mortally hit by a car, so his kidney goes to the Wilms child. Presto! Instant cure for cancer!

You know, even that flight of fancy didn’t bug me too much. Because having nothing to do with this show, when your child is diagnosed with Wilms, if you’re lucky to have a lot of love in your life, you’ll probably have at least one person offer up a kidney. And you’ll thank them, and explain that the doctors don’t treat Wilms that way, but you’ll both go away with a warm feeling.

No, the part that bugged me was when the mom began railing that she had to get a donor kidney, because otherwise, (escalating anxiety), they were going to start her daughter on chemo that night!

One dose of chemo! OH NO!!!

See, the other stuff, I don’t think it will actually affect anyone. Yeah, parents whose children were diagnosed with Wilms this week might have Aunt Edna calling up to offer her kidney, but no biggie there.

But deciding to let your child receive chemo is hard enough. They’re gonna lose their hair, feel sick, get skinny. But it’s worth it. Because most of the time, it will save their life.

We called chemo “liquid diamonds.” I loved chemo. Every drop was getting my kid closer to being healthy again.

And it’s not just for getting rid of the cancer you know about. Here’s irony: when my daughter got the harshest chemo, she might not have had a cancer cell in her. See, she had a recurrence, picked up on a routine scan. They went in for the biopsy, took out all the cancer they saw (very small), and sent it off to the lab. It came back: Wilms.

Perhaps it was all gone. But the chance was also there that cells had spilled during surgery (one of the “spots” was like a liquid filled blister). Or that there might be other microscopic cells somewhere else.

So, we embarked on chemo. That wasn’t a risk we were willing to “wait and see” about.

It was a difficult decision. Having the idea in my head that chemo is the worst possible thing for your child, that you would be panicky, shrieking, at the idea of your child getting one dose, wouldn’t have helped.

We don’t know what the future will bring. But today…my kid is alive.

What are your thoughts? Unlike General Hospital, we could probably extend this into a multi-post arc.