Monday, January 30, 2012

The Danny Fund

video


The Danny Fund was founded in 1993 when a four-year-old Pelham boy named Danny was diagnosed with a rare form of leukemia. To help, friends provided warmth, love and emotional support to let the parents know they were not alone. They rallied around the family and raised money through bake sales, winter softball games and word of mouth. Danny responded to his treatment, his cancer is in remission, and he is now leading the active and normal life of a 20 year-old. With the crisis behind them, the small group of organizers met. If they could help one family in a meaningful way, why not others? The Danny Fund was born.



Every year the Danny Fund holds a fundraiser.  It is a fun gathering of community members and patrons, along with Danny Fund families.  The mission of the Danny Fund is to help families whose child has been hit by a catastrophic illness.  We are one such family and we ask that you join us on February 11th or make a donation here. For more information, leave me a comment or email given2fly46@yahoo.com.   We cannot thank the Danny Fund enough for all they have done for us.  The video above says it all.

Read more about the Danny Fund here.  To see how we have been helped in the past click here, here, and here.


Saturday, January 21, 2012

I Could Not Have Said This Better Myself!



Below is an excerpt from a mom whose child has cancer.  She is a mom I respect greatly and have been following her son's story over at his Caring Bridge site at: 
Many of you will be familiar with the big campaign to get Mattel to make bald Barbies.  That is one issue...each to his/her own, I say.  What struck me the most, was the response to this from the Director for the American Cancer Society...the one many of us raise money for, thinking we are helping our kids.  I was infuriated beyond belief, but could not find the words to express my rage.  Then I read the following.  It is taken word-for-word, I just left out the beginning of the post which actually deserves its own recognition.  
Deliece, you are my hero for expressing this so beautifully:

"Just a few days after that, Andrew Becker, the Media Relations Director for The American Cancer Society (yes, the Relay For Life people) posted a blog. The background is this…one little girl requested a bald Barbie doll as she was going through chemotherapy. Mattel made her one which was VERY cool of them. A couple of cancer moms started a Facebook page to try to get Mattel to make bald Barbies as other children who are going through chemo, who’s moms are going through chemo, or things such as Alopecia or Trichotillowmania which cause hair loss.
Now, whether or not there should be a bald Barbie is not something I really hold a strong opinion about. So what I am going to share with you is really not IN ANY WAY SHAPE OR FORM related to whether or not a bald Barbie should be made. What I am upset about is how the Media Relations Director speaks about our children and breast cancer patients.Bald Barbie or no Bald Barbie…it is his attitude and demeanor toward childhood cancer and breast cancer that has me “wigging out”…pun intended.
Below you will find his words…the post has been pulled from the web and he has made an apology. I will allow you to read it and then I will explain why it’s a lesson about “think before you speak”.
 
Bald Barbie Demand is an Over-Reach
Posted on
January 13, 2012 by asbecker
We apologize if the below post offended some of our readers. We realize that in our zeal to highlight an issue that deserves debate, we may have sounded insensitive. This post was written to provoke debate about the proliferation of products marketed to raise awareness, and we think asked legitimate questions. We believe discussions like this can help focus all our efforts more closely on our shared goal of defeating cancer.
You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls,
to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,
“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”
To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.
In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at
Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.
We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?
The downside to raising awareness has been
well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.
This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.
Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.
My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and
made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?
Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.
Okay…and the next section of this novel will explain what I sent to “Becker” (using the Mr. part makes it seem like I respect him so I’ll stick with Becker) via email at andrew.becker@cancer.org.
Let’s take it one point at a time. First he talks about “raising awareness” and do we really need one more thing to raise awareness. I’m going to say, “YES!” Here is why…80% of the children who will be diagnosed with cancer have disease that is already at stage 3 or 4 when that is only true 20% of the time with adults. Remember that we took Braden into the ER on October 31, 2007 and they did a chest x-ray that showed a small gray mass…low hemoglobin…overnight stay in the hospital…and they told us to give him iron drops for dietary lack of iron and follow up with our pediatrician. Which I did…I took him back in repeatedly telling them that something was wrong and finally 2 months later on December 28, 2007, we took him to the ER and they did another chest x-ray and his “small gray shadow” was a tumor so large it was pushing organs out of his way. He had been to our pediatrician only a few days before that and was given oral steroids because he wasn’t moving much air on his right side. That was because the tumor was compressing his lung.
THE DOCTORS WERE NOT AWARE OF CHILDHOOD cANCER AND THEY MISSED BRADEN’S DIAGNOSIS WITH AN X-RAY AND OVERNIGHT STAY IN A HOSPITAL WITH LABS THAT SHOWED LOW HGB! THEY MISSED IT ON OUR REPEATED VISITS BACK TO THE PEDIATRICIAN!
HELL YES WE NEED MORE AWARENESS!!! ARE YOU EVEN SERIOUS WITH YOUR QUESTION BECKER?
When even Doctors are unaware…there is a problem. At our “diagnosis meeting” where they told us about neuroblastoma, treatments, and odds, Dr. Shore looked at me and said, “you can’t blame yourself for missing this diagnosis”. I looked him squarely in the eyes and said, “OH I don’t blame ME, I blame YOU medical people! I’ve been trying to tell you something was wrong and you wouldn’t listen!”
I have adult friends who have died from cancer and who are battling stage 4 disease…yes, their cancers need more awareness too!! Wouldn’t you think the Director of Media Relations for a group whose mission is to fight all cancers, would get that?
Becker makes the point that dollars would be better spent donated to research rather than buying a Barbie. I don’t see the relationship…not sure that the sales of a Barbie would go to anything other than Mattel and people buying the Barbies aren’t buying the Barbies to cure childhood cancer, they are buying them to give their babies something to play with that they can identify with. However, the bigger issue for me is this:
The American Cancer Society donates $0.007 of every dollar raised toward childhood cancer research. Now..he makes the point that childhood cancer is exceedingly rare so I suppose in their minds, it doesn’t need to be funded. CHILDHOOD CANCER IS THE NUMBER ONE KILLER BY DISEASE AMONG CHILDREN!! Yup…we are number one! Woo hoo...doesn't everyone want to be #1 at something!?  I don’t want to be number one…I want to be number negative one…times infinity to the power of infinity...times ten. I don’t want these diseases even in our vocabulary. Perhaps he would like to explain to the 13,000 families whose children will be diagnosed with childhood cancer this year alone…and who will be fighting stage 3 or 4 disease because of the lack of awareness that we shouldn’t worry because it’s rare. These children are fighting for their lives…TOO MANY have already lost their lives because we didn’t have treatments for them…Jacob, Sarah, Jared, Mandy, Hope, Lucy, and sadly the list goes on and on and on…
I believe that because ACS donates only 1% of their funds to childhood cancer, they should not be telling everyone else to donate to research of childhood cancer. Seems a tad bit…okay, a LOT BIT…hypocritical to me! “Good people, please donate your money to ACS so we can given 99% of it to something else.” Leaves me shaking my head. That is why organizations like Braden’s Hope For Childhood Cancer were created…because the ACS is virtually ignoring our children so we are stepping up to the plate. When you and your organization step up to the plate Becker, you can tell everyone in the world to donate money to childhood cancer research. Just my opinion!
And then there’s the breast cancer side! Apparently, Susan G Komen’s Society has done a terrible job of creating awareness. They have made us TOO aware of breast cancer. Shame on them…I suppose that I why I was doing monthly self exams and when I found a lump, I knew what it was and knew I needed to get it looked at right away. And then when they did tell me it was cancer, I had a plethora of treatment options/drugs available to me…compared to the “no known cure” Braden received. I guess that women do not have the right to make their own medical decisions with the consulation of their oncologists and surgeons about whether or not to have mastectomies. Shame on those of us who have elected the option of mastectomy verses lumpectomy because we want to do everything possible so we have less of a chance of it coming back. Shame on us! I suppose your own family history and experience should have nothing to do with what you decide because Becker says that too much awareness is making women lop off our breasts because there’s too much awareness and too many silicon bracelets? I am SO extremely misinformed and uneducated and so are the THOUSANDS of women in the world who are fighting breast cancer. Shame on us, breast cancer sisters! We should know better!
Yes, that was sarcasm. This post upset me as much as a breast cancer survivor as it did a parent of a child fighting cancer. I feel that naughty finger creeping up!!
The paragraph that made me the angriest (yup…I haven’t even gotten as mad as I am going to get yet LOL!!) was this one:
If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.
I am not quite certain why Becker cares about where the dolls end up…but I’m going to skip over my feelings about the beginning of the paragraph and skip to his last line…”It’s why we don’t see advocates calling for lightning strike dolls.”
And at this point…I have had to “simmer down” for several days before posting about this.
Are you kidding me? ARE YOU REALLY SERIOUS?
You are going to marginalize, demean, and irreverently make light of children fighting for their lives...while also taking a swipe at those injured or killed by lightning???? REALLY?!!
SHAME ON YOU ACS AND BECKER!!!! SHAME ON YOU!!!!
I hear comments about children with cancer that are unkind…not very often, but they are out there…remember my first example in this post?? But the LAST people I would expect to make apathetic, inconsiderate comments about children with cancer would be an organization that is asking us all to give them money to fight childhood cancer! 1%…so it’s really not that much of a priority, is it Becker?
Lastly…Mattel and the pressure of making a Barbie. A friend and I were discussing Becker’s post yesterday and she said that Mattel sure has a chance to come out of this looking like a hero thanks to Becker. SO…Becker…thank you because in a weird way, you have raised awareness about the inequities of funding and awareness for childhood cancer…albeit at the black eye you have given the organization you represent…people, like me, are talking about it and that pressure you didn’t want Mattel to have…is now FAR greater thanks to you and your unkind words. I will never again even remotely consider monies donated to ACS for any cancer…adult or pediatric…all of my dollars will go elsewhere. Of course that would have a lot more weight if I had dollars to share, but you get the idea! LOL!
SO I am going to say again…think before you speak.  It's a good rule and one that would have kept many people (Braden and me included) from being hurt by these insensitive words.  Whether you side with Becker on his thoughts about the bald Barbie or not, I hope that I have been able to explain how hurtful his comments about childhood cancer and breast cancer are to those of us who have fought them. Again…shame on you Becker and ACS!!! The wrestling dude probably didn’t know any better…but YOU should have!!
Deliece"

 

Sunday, January 15, 2012

Nutrition for Kids with Cancer


Feeding a family is difficult. Everyone is so fussy: they like things this way or that way, but never the way you have actually made it.  Imagine your taste-buds are totally changed, your stomach and gastrointestinal tract is raw and blistered, you throw up regularly, and your hair has fallen out!  You have cancer and now nothing you are presented with looks appetizing.
Now a company, cofounded by Jessica Welsch called The HopeFULL Company is creating meals that will provide essential nutrients to chemo-ravaged bodies as well as those suffering other illnesses, through meals that are actually appealing and easy to eat.  Please consider supporting their Kickstart drive to get this wonderful business funded.  If I had this resource two years ago, I am sure Button would not be facing the post-treament issues he has now.  Please click on the button to make a pledge ASAP….there are only four days left!

Thursday, January 5, 2012

New Year - Yup!




Well 2012 is upon us and Sammy is cancer free and off treatment.  I was reading back at last year's post and I hardly recognized myself.  It is amazing the toll the last year has taken, despite my very optimistic outlook and resolve to make it a good one.  Fail!!!!!  Read here to see what I said a year ago.  

We had a lovely New Year's Eve at a very close friend's house.  We all stayed over so as to be safe from the drunks on the roads.  We all drank enough to consider it a special night, but no hangovers anywhere!  I, however, slept in until midday as I was so wiped from the night of merriment...my body just ain't working for me at all!  

New Year's Day brought a new ‘treat’...Sammy had a fever of 102.7.  Now just two months ago that would have put me into a catatonic state...and led us straight to the ER...do not pass GO, do not collect $200!  But, now that Sam is off treatment and his port is out, he can be treated by his regular practitioner.  That took a bit of getting used to.  Of course, I called CHAM anyway, just to make sure.  They told me his blood counts had been great on Thursday and there was no reason for them to see him.  

Two days later we got to see the pediatrician (holidays can be such a pain).  Reviewing the history, the doctor decided to take no chances and ordered a full CBC (complete blood count) and several tests for blood pressure etc.  

The strangest thing was, we were in room 13. Sam was diagnosed on the 13th...our lucky number as he would have died had we not caught it when we did.  Yet I had a minor freak-out that it was all happening again...we would be lucky to find it again so as to save his life in room 13!!!!

I remained calm but realized that any small anything was going to induce a terror within that would grip my insides like a vice.  Even the doctors would not just treat as 'normal' but run tests just to be sure.  New Year was a new normal.... off treatment, no CHAM each week, less testing, more "I wonder if..."  

Sammy is still off school as his fever remains and he now has a sore throat.  All part of any school kid's run-of the mill illness.  But I'm looking hard at his glands, checking for petechiae, watching for bruises, and noticing every moment his energy level is down.  

Sammy is sick of being ill.  He has had enough.  He want’s to run and play but the late effects are kicking in and he has mobility issues with his right leg.  This wonderful, brave, and resilient boy is ready for some time off.  He deserves it more than anyone I know.  

I am no longer saying, "At least it is a normal illness this time."  Because it is not fair that Sammy has to feel bad yet again.  I'm not finding the positive outlook is working anymore.... gosh, it has run me into the ground...but most importantly, I am pissed off for my son.... he needs to have a break!  Give my son the gift of good health and leave him alone for a while!  




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