Superman Sammy

The Danny Fund

2012-01-30T17:59:00.002-05:00

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.

I Could Not Have Said This Better Myself!

2012-01-21T12:43:00.003-05:00

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:

http://www.caringbridge.org/visit/bradenh

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"

Nutrition for Kids with Cancer

2012-01-15T23:12:00.002-05:00

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!

New Year - Yup!

2012-01-05T13:58:00.000-05:00

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!

Merry Christmas

2011-12-24T22:20:00.002-05:00

PTSD

2011-12-18T17:10:00.000-05:00

So things are going well with Sammy. His blood counts were good at our last visit, he is becoming more active and his old personality is emerging. The latter can actually be a little challenging, as he was a feisty fellow with an iron will and the ability to argue like a professional lawyer.... but that also helped him get through his battle.

Jack is okay. He has some anger issues that he talks openly about to me, and I feel he might need some counseling to resume in order for him to work through his issues. 'Treatment being over' doesn't mean the feelings go away. In fact, whole new sets of troubles arise.

No one likes to admit to being weak and unable to handle situations. That is not what I am doing with this post, in fact. However, something new is developing, or rather has been brewing over the last few months. Basically, my own body has launched an all out attack on me.... it doesn't want to do anything anymore, and it keeps telling me to quit and go to sleep!

Surely now is the time for me to be getting all excited about the future ahead of us, the gratitude for our beautiful son being able to live his life, the thrill of less hospital visits, and the return to normalcy? But it is not. We hold our breath every time Sam is tired, gets a pain, or falls badly.... not actually as much as I thought I would, but it is still there. Yet, now the worst is over, I am sick...sick and tired...ALL the time!

I have gone through many tests. My body is strong enough to run a marathon! I am fine! I am healthy! I am loosing my mind!!!!! Yep! I am actually diagnosed with Post Traumatic Stress Disorder...what kind of a frickin' wimp am I?????? There are parents who have been through all of this and lost their children...seven every day to be precise! 45 parents are given the news their child has cancer every day, you don't hear of all of them cracking up and needing to sleep all day once the worst is done!

But that is why I'm telling you about it. It is not something that is talked about. And seeing how this blog has basically been a bare my soul, warts and all kind of experience, why stop once treatment is over?

I literally cannot get through a day at work and then function at home. I am on meds to help and I am actually calm and don't get angry, panicky or 'stressed'. But, and this is the big but.... I am exhausted to the point of not being able to do anything almost all of the time. I push and get through what I have to and then, sometimes, collapse in a heap on the couch and ignore the kids and leave my lovely Brian to do it all. I have no choice.

Going out to enjoy myself has also become a chore.... I have made so many apologies lately for missing functions...because I literally slept through them...I have lost count! A good friend had a 'talk' with me yesterday and dragged my butt out to a party. She saw me today and commented on how absolutely wrecked I looked...it took so much out of me. I did enjoy being out, but payback is a bitch and I didn't even drink too much!!!

So what now? Therapy again...this time for a more extended period, done properly! I know I have hit bottom, as I have had to keep my chin up, work with children who deserve nothing less than 100%, look after a sick kid, keep my other son sane, and juggle daily life too! I managed for two years, it is time I let my body rest. Impossible...all the above still apply to varying degrees. But anyone who thinks parents of kids with cancer are okay once treatment is over and their child is on the road to a normal life could not be further from the truth. Now is the time the parents are collapsing and clinging on for dear life!

I will be fine.... other parents will be fine.... but I am sharing a reality that is such a big elephant in the room. Life AFTER cancer sucks too!

Fun and Laughs...

2011-11-27T19:37:00.001-05:00

Samuel Zweig from Just So You Know on Vimeo.

Giving Thanks and Celebrating

2011-11-26T19:41:00.001-05:00

We have just had the most amazing couple of days for many reasons. Firstly, we were able to be truly thankful that Sam and Jack were able to enjoy Thanksgiving in a regular way...no fears about neutropenia, fevers, or admissions. We were also spending Thanksgiving with MANY family members who were flying in from all over the country as well as driving great distances. And finally, we were going to host all those wonderful people for the Jack and Sammy Celebration the next day.

Everything was wonderful: great food, company and spirits. The youngest children, the new generation of cousins, bonded beautifully. Our generation marveled at our being the parents, and the older generations enjoyed watching the little ones have so much fun. It really was everything a Thanksgiving should be. We even got to celebrate Sam and Jack's Great-grandmother Lulu's 90th birthday!!!

The Jack and Sammy Celebration was also fantastic. Once again the little ones bonded and solidified their relationships. Cousins and their spouses chilled out with a few drinks, some silly card games, a game of "Shot Checkers" and also enjoyed playing with the kids. Jack and Sam enjoyed being the hosts...the mimosas flowed (not with the kids) and the party was ON! I'm going to let the pictures tell you the rest.

Playing football

Sad when you can't run as fast as your little cousins :(

Jack and his cousins

The Lego Tower of Thanksgiving!

Forming the new band

Big cousin makes Sammy a flying Space-ship...much cooler than an airplane

Generations

Lulu looking very good!

My special boy, Jack

Cute!

Celebration cake

Together!

Brothers forever!

Big and little cuz

Our wonderful aunt and uncle

Artistic moment

The boys take a turn

More Space-ship creating....competition about to start

Beer-shot Checkers!!!

The family

Sammy's back!

No More Words!

2011-11-13T13:13:00.001-05:00

Now that we are in the 'after treatment' phase, I am lost for words most of the time. Sammy's port comes out tomorrow and then we become monthly visitors for blood work, have cognitive and vital organ testing each year, and basically plod on with life. Cool!

But I wanted to put into words how I felt about this journey and I couldn't...so I cheated and made a slideshow with a song that helps me say it all. We triumphed over adversity and had a whole lotta love along the way to keep us going.

Love boat captain
Take the reigns and steer us towards the clear,... here.
It's already been sung, but it can't be said enough.
All you need is love

Is this just another phase? Earthquakes making waves,...
Trying to shake the cancer off? Stupid human beings,...
Once you hold the hand of love,.. it's all surmountable.

Love Boat Captain
Pearl Jam

Light the Night

2011-11-12T18:56:00.001-05:00

Superman Sammy was a wonderful Honored Patient at this year's Light the Night walk at Playland. We had so many people come to support us, including friends form work, our neighborhood (even though many had moved away), and as far as from California and Florida!!! There were many orange t. shirts showing Sammy much love that night.

LPAC danced again and wowed the audience, and the overall turnout was excellent. We have raised $8500 to date and there is more to come.

Sammy was cold and tired by the time he needed to go on stage...we had partied the night before with all our friends from near and far...so he was not as on form as usual once on stage. He did well, however, and I spoke for him and talked about our journey, and how much I want the road we are all traveling on to be CLOSED for good...no more cancer!!!

Sammy and I had been videoed earlier in the day to promote LTN and Sammy was also interviewed by News 12 Westchester. He really is getting to be an old pro at the celebrity thing!

Walking was wonderful, surrounded by so many people who were there to support us as well as the Warriors. Peter had returned home from college to be there and was as much an inspiration as ever. He really is the vision of hope that drives parents forward.

Final numbers and amounts have yet to be counted..I will let you know as soon as they are. But for now, here are some pictures of the night:

We're Done!

2011-10-30T11:16:00.003-04:00

"The sun is setting...the sun will rise another day!" (Long Road) EV

Well, the day for the sun to rise has finally come... Sammy is off treatment. Strangely, I didn't leap to the computer to share it with you all as soon as it happened. In fact, I have avoided this blog for quite some time. I am not sure why...I just didn't want to post anything.

I do have fun moments to share:

We went pumpkin picking at our usual farm and had fun before treatment was over.

During week two of the last cycle, we journeyed to Maryland for Cousin David's wedding with the beautiful Chesapeake Bay as a backdrop .

The boys enjoyed the hotel pool! Sammy perfected his handstands :)

Then came the final dose of Mercaptopurine. I never thought this would come. I captured the moment on camera...felling strange for wanting to. First I had to crush the pills...

This is our box of ~~poisons~~ medicines....the entire drawer is filled!

Once the pills were crushed, I mixed them with coke...once the white powder was hardly visible, it was time to drink it on down.

Nothing like drinking in your sleep. Sammy actually doesn't remember most nights.

To celebrate, balloons and gifts awaited the boys on the final day of chemo...Sam would be going into the clinic for his final dose of Methotrexate. Jack wanted to get up early with him to cheer him on.

Leslie came with goodies: A big box of donuts and juice to celebrate!

Megan had to have a hug!

The following day, a surprise awaited us....the entire school (and most of the district) donned the orange Superman Sammy t.shirts again to cheer Sammy at the end of treatment. We walked out to the playground to a sea of orange and chants of "Sammy..Sammy". Amazing and very emotional!

So now it is over...except it really isn't. While we feel very lucky, we still have a long time before Sam is five years clear. We still have to draw blood and hope nothing shows up in it every month. We still have to force medicine into Sam to protect him as his body is still weakened from the chemo. We still have to have heart, major organ, and cognitive testing done to see how Sam is doing.

I don't know if I will blog all of this...I hope I do....but for now I just want to put things as far behind me as I can. Of course I can't do that really....next week is the big Light the Night walk....it means so much to us and raises MUCH needed funds for fighting blood cancers. I will never stop raising money to find a cure...to beat cancer....to know other children do not have to go through what my beautiful little boy went through. It has been a LONG ROAD indeed!

Challenges, Promote Your Blog, Win $100!!

2011-10-09T21:31:00.001-04:00

While we celebrate the end of treatment in a few weeks, the picture I took yesterday (see above) clearly shows how much of a toll the chemicals we have to give him to fight the cancer takes on his little body. This is "Steroid Week" an experience I would not wish on my worst enemy. Hence the need to continue looking for cures and medicines that are less harmful for patients: Sammy is disabled...hopefully able to recover once treatment stops...and we have to monitor him forever to see if late-effects do more damage as he ages.

If you want a fun challenge, promote your blog, have the chance to will $100 gift certificate to Amazon AND help kick cancer's butt, click on over to Shannon's wonderful blog designed to help Sammy and the thousands of others fighting now and in the future.

http://www.bethechangechallenge.blogspot.com/

Or buy something beautiful with 100% of sales on select items going to Sammy's Light the Night Fundraiser by visiting

PLEASE pass this on to others, whether you decide to purchase, take part, or donate yourself...it is all for an amazing cause.

xxxx

Two Minutes Is All It Might Take

2011-09-30T20:42:00.001-04:00

As we come to the end of Childhood Cancer Awareness month, let me ask one more favor from you.

Children are diagnosed much later than many adults because doctors just don't look for cancer in the young, or they don't recognize symptoms until the cancer has spread. In addition, children are given treatments which are fifty years old...protocols have changed and survival has improved, but the late-effects can be debilitating.

Yet the national government allocates a minuscule amount of cancer research funds towards childhood cancers. ALL childhood cancers get about 2% of all funding provided for cancer research.

If you would like to help remind the government that this situation is unacceptable, especially as tomorrow between 35-47 children will be newly diagnosed, please click on the link to sign the petition to the White House to increase funding for childhood cancer research.

https://wwws.whitehouse.gov/petitions#!/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw

I did it....I am AWARE of childhood cancer...I have watched my son go through hell. Please take the two minutes needed to sign the petition: also so we might prevent other children...sadly not the 35 kids diagnosed tomorrow or the 35 diagnosed the next day....but maybe we can help the children who will be diagnosed a year from now....only they will be caught early enough to avoid the ravishing chemo and radiation that render a tiny body limp and helpless. Or they might be blessed with new treatment options, a new drug, or a therapy that eliminates some of the pain. This will only happen if the funding is there, so please help that become reality for the children who will have cancer!
Thank you from the bottom of my heart!
Katy xxxx

Sammy's Big News!

2011-09-27T18:42:00.001-04:00

Sammy only has less than a month until he's off treatment. In a couple more months he is going to have his port taken out. That's when it's PARTY TIME!

These are Sammy's words. He wanted to tell you all himself!

Anniversary

2011-09-13T21:00:00.003-04:00

Yankees - full of cancer but we didn't know it yet

Today, two years ago, right about his time, I took my Sammy to the ER. The doctor told me he had cancer! Our lives changed forever. I still remember every moment of being told that diagnosis...EXACTLY what the doctor looked like, how Sammy was sitting on the bed looking up at me wondering what was going on, where the phone was across the room, what the wallpaper border looked like!

Today is our diagnosis anniversary...but more importantly, our STILL ALIVE anniversary! Sammy, you rock!

The above is my FB update...

Sleeping during the first weeks of chemo in hospital

I feel strange about the whole thing. I am taking the good and rolling with it, yet still my heart breaks too often. Steroids are coming up and I dread it. But...at least we are still giving the steroids and not mourning the loss of a fantastic boy. Tonight I will remember the first night....I wish I could block it out forever. I don't mean to dwell on it...it is just something I cannot shake from my mind right now.

Another stay in hospital - our second home during the first year

I am experiencing something many know too well....'survivor guilt'. Yup, I should be over the moon, grateful, making the most of it all, but I feel guilty that seven mothers that I know about are not able to worry about steroids any more. They talk to their child in Heaven! Yet I am so grateful to all those who celebrated our two year mark...they saw it as a good thing and, believe me, so do I! But celebrating the fact your son is still alive SUCKS! It means he was dying.

Sammy is so used to the clinic he can goof around now!

Here ends my negative rant about a positive day....we caught the evil monster before it took Sammy...we are beating it to a pulp....Sammy is the bravest kid I know and his brother, Jack, is beyond compassionate, patient and loving. They both grew up too quickly, but they are both amazing people. So let's celebrate!

Men of Steel, Hearts of Gold

2011-09-02T22:28:00.000-04:00

I frequent the site of a beautiful young cancer survivor who has been traveling to promote her book about her journey through leukemia, Melinda Marchiano

and came across a link that made me smile, cry and rejoice...all at the same time.

During construction of the Richard A. and Susan F. Smith Research Laboratories in 1996 adjacent to the YCCC site, construction workers performed a similar honor – painting hundreds of kids' names along with smiley faces and messages like "IRONWORKERS THINK YOU'RE GREAT."

The workers were so moved by the children who peeked out at them from the clinic windows that they "passed the hard hat" weekly to collect cash donations for the Jimmy Fund.

This is now being repeated and children are being immortalized on steel as a new construction goes up for the Dana Farber Institute. Sammy's protocol is Dana Farber.

It is a beautiful thing when a suffering child can be made to smile again.

September is CHILD CANCER AWARENESS MONTH - what can you do to bring a smile to the face of a child with cancer? Some of you may only need to walk up to him or her and tell them you love them. They are your children and you need no month to remind you that they have cancer. Some of you may know a child with cancer and will send them a card wishing them well, reminding them how much you think and care about them. Others may not know anyone personally but might make a small donation to a charity that helps children fight and survive.

A very small percentage will do nothing.

Goof-ball AKA- Superman Sammy!

On Sammy's behalf, we thank you for all the cards, gifts, visits, letters, donations, love and support. Without these he would not now be able to smile through the treatments, he would not have the fight in him that he does. Today Sammy fights for others and is an inspiration to those who meet him. You have no idea how much your small token of love did to change the world!

Super Sammy Walks for a Cure!

September - A Big Month for Childhood Cancer!

2011-08-31T22:18:00.000-04:00

I have just come downstairs after hugging my lovely Sammy for over an hour as he suffers severe pain in the testicles and stomach. We are two days clear of the steroids but they have built up so much in his little body that the effects stay a lot longer and are more severe.

While the usual treatment cycles are continuing and the steroids are getting harder to bear, we are slowly creeping to the finish line. Unfortunately, the finish line is not the end of the road....our journey lasts a lifetime. But that is okay....I am going to take a full, get to old-age, need diapers again and false teeth type of lifetime....over any late-effects shortening lifetime!

September is Childhood Cancer Awareness Month. Funny how Sam was mis-diagnosed by four doctors during the very month everyone should be ultra-aware of childhood cancers! I, however, did not know it was such an important month before September 13th, 2009. I had no idea and really didn't give it much thought. I sent donations to St. Jude's and felt I had done my bit!

Many of you reading this will already know it is a special month. Sadly, you will be on a similar journey to my family. You will know the statistics, the pain, and the feeling of hopelessness when cancer just overwhelms you. Some of you will not have known, not because you don't care, but because pink ribbons get more air time than gold ribbons.

Boston.com highlights some of the children and their families in a beautiful way. Take a look here Scroll down to the comments for a chance to read about hope, joy, sadness and loss. All part of childhood cancer. As I type, there are 1080 comments!!!!

Statistics are boring, but not when your son is one of them. So here are a few just to raise awareness:

This year it is estimated that 10,700 children will be diagnosed with cancer un the United States
An estimated 1,340 of these children will die from their cancer
Almost one-third of the deaths will be from leukemia
Since 1975, there has been a 55% decrease in childhood cancer deaths
Cancer is the #1 cause of illness-related death in children

http://www.candlelighters.org/Information/AboutChildhoodCancer/ChildhoodCancerStatistics.aspx

Parents, like me, don't always think to ask for a blood test at their child's annual physical. If blood-work had been done, Sammy would have been treated a little earlier and perhaps suffered less aggressive treatment. Raising awareness, telling parents (and others) about such things may help reduce the number of children who are diagnosed late into their disease. Adults are far more likely to be diagnosed early...go figure?

Sammy spoke at the Light the Night opening ceremony. He will also talk at the LTN walk for the cure on November 5th...he is raising awareness and actively fighting for a cure. Sammy is seven and still on treatment, but he has not let that stop him talk with the press and discuss his illness publicly if he feels it will benefit his cause.

Please consider supporting Sammy as he walks on November 5th. You will be supporting thousands, perhaps more, as we raise funds for research to cure cancer and help prevent late-effects ravaging those already burdened with so much.

Super Sammy Walks for a Cure!

Before Diagnosis

The First Year

Getting There

Lucky 13

2011-08-16T23:27:00.000-04:00

Jack and Brian came with us to the clinic last Thursday. It was quite the family affair. The reason we all descended upon CHAM was due to the fact Sammy was scheduled to record his Oral History video and we wanted the whole family involved. Of course, before we did that, we had to go through the usual visit palaver.

Jack seemed fine with the whole thing...we were glad that it was a quiet day and there was not the usual bustling and sounds coming from the other beds. (We have seen Sammy grow from screaming child to confident master of his domain, but there are always new children taking the journey and their cries and screams would have upset Jack a lot....I know, I have gone to the bathroom for a cry on past visits!)

Daisy was there taking Sammy's vitals as usual. I had to leap at the chance to get a picture of her ready for Sammy's scrapbook. I am trying to get as many doctors, curses etc. as I can before treatment is over. Not that we won't be back...we will every month, but I just want to capture the 'treatment time' right now.

Speaking of treatment, Dr. C gave us the final date for Sam. He will get his last dose of Methotrexate on October 13th!!!! 13 really is our lucky number...we discovered the leukemia (just in time) on September 13th, 2009, and we end treatment exactly two years later. I am soooo excited. I have blown off the anxiety over it right now...I am sure it will come back, but right now I'm HAPPY!!!!!!

Dr. Jack!

Light The Night Kick-Off

2011-08-14T17:05:00.001-04:00

As an honored patient of the Light the Night Walk this year, Sammy was asked to be part of the Kick-Off ceremony. He is one of the faces of blood cancer! He is the face showing the reasons why people are asked to walk and donate money. Here are some more reasons to give:

Childhood cancer is the #1 cause of death by disease in children under 20.
When children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults. Many children are originally misdiagnosed, which leads to greater suffering and many times, death.
One in five children diagnosed with cancer will die. In some forms of childhood cancer, one in five will live.

This information was taken from a website written by an incredible young cancer survivor whose post is in honor of a child who passed away last week. We walk for people like Ethan Jostad and Melinda Marchiano.

I know I am talking about more than blood cancer, but the LLS has been finding treatments for blood cancers which actually have become successful in treating many other forms of cancer also.

Sammy was a trooper having had his lumbar puncture earlier that same day. He was exhausted and pumped with more chemo than usual, including steroids, but he talked and smiled and socialized like a pro! He joined me as I gave a brief speech honoring Sammy and explaining why the walk is so important. He even ended the speech saying he's going to kick cancers ass!!! The room was in uproar...I was shocked but immensely proud of his resolve.

We now start the campaign to really get as much money as we can to help save the lives of both children and adults. The LLS is also now funding research for the dreaded Late Effects which will be looming over Sammy for the rest of his life.

I am proud of my son for all he is willing to do to help with this fundraising. At the same time I am devastated he is the face of cancer! Not my son!!!! Yes, unfortunately cancer does not care who you are...the beast will become part of your life if it so chooses.

Please help us find a cure and beat the beast once and for all....I don't ever want to see a child posted as the face of cancer, even though it is in the positive light of fighting for a cure....no-one should endure this!

If you live locally (Westchester/Fairfield) you can sign up to join Sammy's team and walk with us. It is a wonderfully fun night...Sammy will also be speaking on stage! To join, just sign up on Sammy's team page. (See link below) If you cannot join the team but would like to make a donation, the link is the same, just follow the prompts. Any amount is welcome, no matter how small you think it is. Details about the walk are on the webpage:

Join or Donate to Team SuperSammy

Thank you so much to all those who have donated or signed up to walk already...your support is priceless xxxx

The LAST Lumbar Puncture!

2011-08-08T09:40:00.002-04:00

Thursday's clinic was a special day. Although it was the beginning of week one, meaning steroids start again, there was a definite feeling of the beginning of the end of treatment. We all knew that this was the case, but the occasion did not ht me until later into the day.

As usual, we arrived at the clinic at 7am and Sammy went up to the fourth floor for his finger prick. We were then seen pretty quickly by Megan and Dr. G. All was well and we were sent straight back to be accessed....incase the blood would not come out immediately. The counts came back showing everything as it should be....Sammy continues to have excellent blood counts. Joyfully, the blood also came out first time, and Donna, the nurse, was able to administer the IV chemos really quickly. We were all trying to make sure Sam was ready to go over to the Day Hospital as soon as he was called.

Then we hear that the sedation team wasn't even in the building yet. It was about nine o'clock and we were done with chemo. Now we had to wait! Thankfully, Sammy had Nana and I to keep him company, along with a couple of visitors: Sammy was invited to be a star in his own video - a non-profit company explained that next week, Sammy and his family could record a half-hour video as an oral history for the family. We spent some quality time together practicing questions we might ask each other for the video.

Another visitor was Matt from The Hole in the Wall Camp. He had obviously met Sam before and they got along wonderfully. Here is Sam coloring a picture of Mr. Krabs from Spongebob. Matt colored Ariel from The Little Mermaid....Sammy got a real kick out of that and was giggling and very happy.

It must have been very hard for Sammy as we did not go through to the Day Hospital until almost 11:30! He was so hungry as he couldn't eat before anesthesia. I was delighted, however, to see that Dr. S and Kim were the team on duty that day. Dr. S is the head of the department...the one who saw us through radiation.

Kim came in to do the usual check-up and questions, but before anything else she announced that this was a BIG day for us. I stared at her blankly for a moment before realizing she was referring to the fact this was the LAST LP. Her happiness, hugs and congratulations awoke my comprehension of the enormity of the event! LAST, LAST, LAST, LAST, LAST!!!!!!!! Oh my goodness! We were ENDING something that had been part of our lives for two years. Dr. S gave us a similar greeting and then got down to his usual friendly business.

The LP went well. Sam was scared once we went into the OR and needed a lot of comforting. He needed enough sleepy medicine to knock out an elephant...he just wouldn't got to sleep!!! Once he was finally out, Dr. S and Kim worked on keeping him safe while under, and Dr. L performed the procedure. It all took about five minutes and then Sam was wheeled back into recovery.

Already awake, Sam was quite entertaining as he saw three of Nana and I, thought my hand was all covered in warts, watched ships sailing on the curtains, and asked every few minutes, "Where are we?" Keeping him horizontal was the biggest challenge! Sam wanted to sit up and play his DS game.....how he was planning to do that with blurry eyes and wires attached to his arms and fingers, I will never know!

So it is done! We have reached a major milestone in treatment....we are on our way to the rest of our lives :)

Simple Pleasures

2011-08-02T23:47:00.001-04:00

Things have been good lately. I am on a high from knowing we are nearing the end of treatment (optimistic and refusing to worry about the 'what ifs'). Nana's recent visit was far too short. Three weeks is a long time for a houseguest but we only get to see her once a year. It is not enough. However, we were able to enjoy a lovely time together.

This is my favorite picture of our time in NYC, capturing the two boys hanging out by the lake in Central Park. It sums up the entire visit: we were all too exhausted, sick or steroidy to do amazing adventures like we usually do, but we got to stop and SEE things....actually take time to soak in some easy-going pleasure!

Here the boys were watching turtles. One turtle was very intent on getting food from them. Utterly disappointed that there was non forthcoming, the turtle, who had crawled out of the lake to practically beg for the food, slunk back in very disgruntled. I do believe the boys could have spent the entire afternoon there.

It is good to see children enjoying nature and simple free pleasures. All too often the cry for more time on the Wii or "Just one more TV show....PLEASE!!!" come flying in my direction. On this day, however, we all just drank in the amazing views of NYC surrounding the lake as turtles, geese and boats provided us with all the entertainment we needed.

What a Week!

2011-07-23T11:29:00.001-04:00

There are many things to write about Nana's visit. All will be done in time. This past week, however, was a little challenging but turned out to be inspiring.

The steroid pulse had its usual stuff...plus severe back pain in Sammy's lower back. Each cycle we get a new development...what fun! This week was very intense as far as crying from anger/frustration/pain goes, and we resorted to the Codine several times. Sam has to feel very bad before he'll take anything.

Basically, the pain and crying continued into the following Thursday. This is not not usual as, by Tuesday, Sammy generally starts to feel better. Thankfully he did have his kidney ultrasound scheduled on Thursday which put my mind at ease. Everything came back okay. One kidney is slightly larger than the other, but nothing is amiss.

So it has been officially decided by the doctors that Sammy is being affected by the steroids and other chemo meds in a slightly stranger way than they are used to seeing, but it is all good in that it means the meds are working and our goal is closer to being reached. How do you tell a young child that?

I didn't have to! Sammy had an amazing discussion with me about the whole thing. He began by explaining to me that the bad pain was a sign that the steroids were the 'good guys' because they were kicking the cancers butt. He understood that he needed to grin and bear the last few cycles, and seemed determined to let the whole thing play out. He talked in story format terms: the good guys were the chemo meds, the bad guys were the cancer blasts. The setting was his body and the main problem was the fact the blasts wanted to take over his blood and leave no room for the heathy cells..the other good guys. The solution was to keep taking his meds and deal with the pain as it was okay pain....he didn't like it but he knows WHY he has it. Boy, was I listening to this with pride and wonderment!

So Sammy has turned the whole thing around and created a battleground inside his body where, basically, a video game is going on. He has learned to handle this in his own, unique way, and has accepted things on his terms. I have gained strength from this; I have a much more positive attitude than I have had of late...fearing the toll on Sammy was unfair and not what I had in mind for my lovely child (well it still isn't, but I am not looking at it the same way).

Sammy has taught me to be thankful for where we are now. I should have always been thankful...I actually was at the beginning of the journey...but stress took a hold of me and did some funky stuff! The nurse at clinic this Thursday was really impressed by Sam's blood counts. All the doctors are too on a regular basis. THIS shows he is doing very well as far as treatment goes. I an SO VERY grateful I am in this place, and I know Sammy shows no signs of losing.

Next time I see Sam limp, cry, or struggle with his hands, I am going to try to reflect on his story: the good guys are beating up the bad guys and the setting (his body) gets a little battered in the process...but the good guys are winning and the setting will be okay. Sammy sees a video game....I see a hero.

Control Toxicity in Treatment

2011-07-15T10:54:00.000-04:00

We are entering a strange new phase in Sam's treatment. With all fingers crossed, I can say his treatment is going very well and shows all the signs of being successful, I am so happy that I am able to positively look towards the future again, in terms of having Sammy with us. I will not allow myself to relax totally, incase I jinx the whole thing...I am like that.

We now needs to make sure the toxicity from the chemo does not impact Sam's future. His recent results from the neurological test and the impending kidney tests show that toxic chemicals have hurt his body...the price we pay for keeping him alive..so I have to accept them. Yesterday, in clinic, Dr. L actually reduced the Vincristine to try to help Sam feel less pain and neuropathy. It may be increased again...don't forget, the main idea is to keep him alive so neuropathy may be a price Sam has to pay.

I have heard that there are ways to control the neuropathy through diet and exercise. This is my focus now. I want to learn all I can about the nutrition and exercise that will give Sam the best chance to run with his friends again.

Oh, BTW -it is week one - steroids..yeay!!! Roll on November :)

Summer Kicks In

2011-07-12T11:12:00.000-04:00

So, despite the exhaustion, we have begun summer and the good days have been good. Just before Nana arrived, I took the boys to the Big Apple Circus. As soon as the circus arrived in town, I was delighted that both Jack and Sam wanted to go. Being unable to get my act together, I missed the special offer on cheaper tickets, but did still get great near ring-side seats. We had a blast and the boys declared it was even better than last year! Sammy still does a great impression of one of the clowns - remarkably good and very accurate...what a memory!

Once Nana arrived, we spent a couple of days letting her get over the journey. With Lupus and other such ailments, the journey tends to take it out of her. The kids were ecstatic to see her again; they miss her so much as we only get to see her once a year.

Our first big day trip was to Philipsburg Manor in Sleepy Hollow. It is a working manor house and a place we visit every year. We were greeted by a lovely lady in 18th century costume who escorted us around and informed us of various historical significances as we went. Sam and Jack were in fine form with their questions...mostly relevant and showing genuine interest in the history around them. Norman the cow was a hit, as was the tour of the manor house and the working mill. My kids never cease to amaze me: if I had told them we were off to learn about colonial history, they would not have even got into the car, but they soaked it all up and loved every minute of it...Sammy raising his hand to ask questions was just delicious!

Exhaustion!

2011-07-07T07:50:00.000-04:00

The beginning of summer should be a time when I galvanize and get activities rolling. Usually, when my mum comes to visit, we set about on all kinds of adventures with the boys; trips to parks, beaches, zoos, and other places the kids love. Well, it is now most of the way through the first week of her stay and we have not been anywhere except for a quick bite at a local restaurant.

Exhaustion has been plaguing me for several months. It has crept into every fiber of my body and refuses to leave. I force myself to do the things that HAVE to be done...mostly, and then sit with a feeling of guilt when the other stuff piles up and gets ignored. I don't want to be like this. I want to be happy, energetic, motivated - back to me!

But I know I am not alone in the cancer parent exhaustion mode. CPEM is part of the reaction to months/years of adrenaline pumping fear and anxiety: life or death of child, managing to pay bills, keeping the house, staying at work or quitting to be with sick child, making sure siblings are not left in the lurch, wondering why hair falls out when it no longer should, tests, tests, tests, results which stink, anger, frustration, hurt, fear, uselessness, sadness....the understanding that 'cure' does not really mean Sammy will be cured!

I have reached a point where I go through the motions...or not! I crave other worlds...fantasy worlds which have nothing to do with cancer or pain or heartache. I found the energy to take myself off to two Eddie Vedder shows in one week, actually staying up all night after one and working the next day. I have danced for two hours straight, several nights a week, rehearsing for a stage performance...both felt great...they were my escape. But back in my reality, I have no energy, I get fevers constantly, I cannot find the motivation to do any more than I really have to.

My goodness, I have put the last load of laundry through the wash about five times now... I just keep forgetting it is there and have to redo it. When one of the boys is naked, I will be forced to make a move and get onto it.

I have just looked back at photos of Nana's visit last year. Sammy was very sick, but we still did a lot. Will I get the energy to push myself to do that this year? I don't really know. I know I SHOULD....for the boy's sake....but I am scared that I don't have it in me.

Sammy is at the clinic now. We were all up at the usual 5:30am and I decided not to go back to bed or I would never get up again. My latest fever is abating and I actually hope I can move myself to take the dog for an early morning stroll. The laundry is still calling but I can't face that yet.

CPEM - the cancer parent's response to stress! The result of having no respite from the reality of a child with cancer. I hope I get to blog all the things we get up to this summer....I won't be as 'there' mentally as I would like to be....but if I can fake it and be there physically, it will be an accomplishment.

As usual, I want to try to do something about the situation. Dance is over, Eddie Vedder is across the other side of the country, fantasy land is not as easy to get into right now. I do know that for me to be there for my children, my wonderful boys, I need to take some time for me. Ten percent of the week needs to go to me time. Then I hope I will be more able to be there for the boys the other ninety percent. (Brian is included in 'the boys'.) So....I'm off to try some Kickboxing!