So what happened?

I’ve had more than a few people ask how Declan went from doing great to, well not.  From only tumor  remnants…to too numerous to count.  So let me try to explain as best I can.

I just read back to see how I wrote about the last few weeks, to wrap my head around how I told you.  I mean there is a decent amount of hospital lingo Stan and I became accustomed to but I think I kept you pretty close to where we were.

So that week at home was just wonderful…granted Will and Brady were not there but it was kind of nice to have both Declan and Cole together, alone, to spend that one on one time together.  To enjoy the kinds of things they should have been…a shared walk in the sun.

It was Saturday when we first noticed that Declan’s eyelids were drooping a little.  It wasn’t jaw droppingly alarming because when he was first diagnosed it was his gaze which was cast down, not just his eyelids.  His temperament seemed find…no changes in his behavior i.e. not cranky, lethargic or over all off his game.  He seemed fine so we watched it overnight.  By the next day it became apparent something wasn’t right as his eyelids were now at half mast…definitely ER worthy and he was beginning to become restless.  As you know by the time we were in the ER it was very apparent something was wrong and so we learned about the enlarged 4th ventricle.

Surgery was scheduled to repair the ventricle and investigate the possible new lesion/tumor.  Then the second surgery to repair what was believed to be a clogged shunt tubing which was causing the second 4th ventricle enlargement.  It was before this surgery where the question of ‘something’ else at the top of the spine was noted which was what ordered the full head to tailbone MRI to assess his spine as well.  It was this final MRI which revealed the cancer has returned to his spine…it had returned in such a manner that the tumors were “too numerous to count”.  We asked to see the MRI…where the spinal cord should show up black on the films, it was almost all gray or tumor.  It was crushing. I am still in awe of Declan and how he showed no outward sign of the tumor literally choking his spinal cord. I mean I guess it was causing or perhaps contributing to the issues with the 4th ventricle but that wasn’t immediately apparent or discussed.

So again, how?  Well, the last MRI Declan had from head to tail was June 2nd in Houston.  In that MRI, there was no evidence of tumor in his spine…nothing.  It was why the decision to not radiate his spine was made.  At that point, there was nothing there.  During radiation there is no need to do any exploratory MRIs as the radiation can actually make things look worse initially and in general they really don’t like doing them because of the extra radiation to a patient, especially children…I always found that to be so odd, I mean we’re battling aggressive cancer is that really a concern?  I know, I know but it still always made me scratch my head.  So there was no need to do any additional MRI’s while in Houston.  The only ones we did were related to issues with Declan’s shunt and it was a CT scan and nothing was ever seen.  Additionally, every 3 weeks during Declan’s interthecal chemo injections to his spinal fluid; fluid was drawn and tested for cancer cells.  No reports ever came back with tumor cells present or it would have been a game changer immediately.

So while the last week was rough from a multiple brain surgery and a new tumor found perspective, we truly did not believe it wasn’t something which could be treated with perhaps a new chemo regime.  We were not naive to the serious nature…we’re talking emergency brain surgeries and new things are being found…hence the ‘expectmiracles expectmiracles’ post but we truly were blown away by the news that Declan’s cancer had spread to the point that there was nothing left for us to do but say good bye.   It was the combination of the cancer returning with a vengeance and the ventricle enlarging for the 3rd time which really excellerated Declan’s passing.

It’s still mind numbing today to remember that sequence of events but you truly did know what we knew as we came to know it and were punched in the gut like we were.

I hope that helps to shed some light on the speed at which our sweet Declan left our arms.

Been afraid

to try to write everyday.  I’ll be honest, I’m not sure everyone really wants to know exactly what it’s like to be where we are.

I went to dinner with some friends tonight.  I have been lucky in my life to have met and been blessed to call some amazing people friends.  Elementary…middle…high school…college…jobs…friends of friends…really the best of people.  I’m blessed. During the course of the night I learned that it wasn’t so much the story of his life (oh what an amazing little life it was) but the day to day of our experience in Declan’s life and his journey, our journey.

I guess I’ve let you down to a certain extent…I mean, this is the part that’s the most hard to understand.  We lost our son, our baby.  He’s never coming back…ever.  No more hugs, no more “’tisses” as they are called in our house, just no more.  And who else is going to try to help you understand but us?  Maybe that’s why I haven’t written as much because I don’t have any answers.  Tonight I came to the realization that no one is looking for answers…well, ok that’s a lie…hell yes we’re looking for answers but they’re not ours to answer now so we’ll have to wait until the Final Act for that piece…but I think it’s about the human connection.  That piece of our world, whether we acknowledge it or not, we all crave.  Declan touched us all.  I am as in awe of that fact as I think some of you are.  He never spoke a word but he conveyed so much…and it wasn’t just the pictures, it was his presence dare I say his aura that captivated.  That really sounds strange but there was just something there.

I guess what I’m saying is, you’ll be hearing from me a lot more.  I can’t tell you what that will mean because every day is a new world to me, to us.  All I can say is I’ll be honest.

It’s late but here’s a quick snapshot of today…

Today I cried a lot.  I cried with great friends about my sweet son.  Sometimes those are the hardest, the people who know us the best.  I think the guard is just down a little bit more.

But I also shrieked with joy when we “caught” Cole waving and saying “bye-bye” for the first time on video.  It was awesome and is putting a smile on my face just thinking about it now.

BTW…there’s a LOT more videoing going on in our house these days…take some advice from me, get out the video/iPhone/Flip/insert your favorite camcorder here and video your kids/parents/whoever.  Heck, embarrass your kids with that video camera…again.  Trust me, you won’t regret one silly, shake-y minute of it…only if you don’t because I have a decent amount but no where near what I wish I had when I want to see his face again.)

It’s a minute to minute thing

We went to Target today and found ourselves in the costume section; the boys were with us so of course…MooOOOoom…DaaAAAaaad…we HAVE to look. It was fun and so great to see their enthusiasm.

It got dicey for me when we went looking for Cole’s costume. Immediately, the Elmo costume caught our eyes and Declan was front of mind (not that he’s not there in most moments). Ok shake it off and move on…then the giraffe costume caught our eye. Stan and I took that knowing glance at each other  We tried to joke off the moment and said maybe Cole could go as Sophie the Giraffe. 

For me, it’s these moments that sting the most and require the utmost strength to keep a stiff upper lip for the boys.  I know they understand why we cry but I also think they need to see we can handle everyday life too…especially those life moments that are so important for kids, like picking out costumes.  

We handled it well and settled on a Superhero theme for the little guys…scary Mummy guy for Will. 

Aw buddy…I miss you so much. We all do. You were such a cute pumpkin last year. 

Sent from my iPhone

Is this really real?

Did you really die 1 month ago today?  It just doesn’t seem possible.  This has to be the longest nightmare in the history of bad night’s sleeps.  I mean it just can’t be real.  The wet linens on my pillow are just my imagination right?  I should be waking up soon.  It isn’t possible that I’m sitting here remembering the last time I held you with your Daddy while we watched you take your last breaths.  Oh God what a living nightmare.

Did I even have twins?  Is it possible that I imagined you?  Imagined holding you and loving you?  I had always dreamed of having twins…maybe you were a wonderful dream and Cole was my only child born on August 26th?

But it is real.  Oh God it’s real.  And it seems like it’s been so long but in the same second it also seems like I’m still holding you.  It’s all so raw.

So many people have said I don’t know how you’re doing it…we don’t know either.  I mean I don’t know how we are putting one foot in front of the other except it’s happening, we’re making it from one minute to the next.  I’m sure a lot of it has to do with our boys and our intense desire to channel this cavernous grief into something good.  I can see how people go off the deep end or shrink from society or friends…it’s very easy to see how you can let yourself be taken down that path but what good is that?  I’m sure no one would question it.  But what purpose does it serve?  All that makes me think of is what a waste.

What a waste to the memory of the Declan.  He deserves more than us shriveling up; so do Will, Brady and Cole.  Declan deserves to be honored.  And what better way to do that then to accept and acknowledge how much we miss him and the tears (because they are there, every day) but to then move forward to the next moment.  Move forward creating a world that is as good and as beautifully mixed up as we can make for our kids (I mean really, it wasn’t perfect before so I’d be shooting for some major stars to say perfect now) while remembering you and your beautiful smile.

I can honestly say, I now know there will not be a minute, an hour, a day in my life that will go by that I won’t think of my sweet baby.  Right now, the memories are wonderfully comforting, wildly heartbreaking and not enough.  What if I’d slept one less hour so I could have had that extra time with you? I hear it will get better with time.  Hard to imagine now but I’m sure it’s true.

For today though, I’m heartbroken all over again…just like I was yesterday and the day before that and the day before that…

If you are visiting Declan’s Journey for the 1st time today…

…let us first thank you and welcome you to the story of our little boy, Declan.  This morning our family is visiting the Today Show to raise awareness and understanding of Pediatric Cancer.  Whether you’re here for the first time or one of the 5800+ that have supported Declan’s fight against cancer we want to tell you about what is driving us.

Declan is the third of our 4 boys (a twin and just 1 minute older than his brother!).

On March 9th, 2010 our lives changed forever, it is the day we learned Declan (then 6 months old) had a brain tumor.  In the days to follow we learned Declan not only had a pinneal brain tumor but two additional tumors (one base of brain and top of spine and one in his right kidney)…all malignant and a rare form of childhood cancer called Atypical Teratoid Rhabdoid Tumors or AT/RT.  (BTW, most childhood cancers are considered rare.)

The Declan’s Journey web site was developed by our family initially as a means to get information to our friends and loved ones about Declan’s illness.  This way we could focus our attention on caring for Declan and our other boys, Will, Brady and Cole.  But somewhere along the way (I think it was when we started posting pictures of Declan’s infectious smile!) something amazing happened…people we didn’t know were following Declan’s story.  They were praying with us…cheering the happy moments (like meeting the Sesame Street characters)…

…and crying along with us in the devastatingly sad moments.  The grace with which our darling little boy handled his treatment was awe inspiring and life changing for us…and for so many others who shared his journey.

Sadly, oh my God so sadly, Declan lost his battle with cancer on August 18th of this year just 8 days shy of what would be his and his twin brother Cole’s 1st birthday.  It would have been easy to let the Journey die on August 18th with Declan…curl up in a ball and mourn the loss of our sweet baby… but we knew we couldn’t!  We don’t want any other family to endure what we have in these last 6 months.  So we have chosen to continue Declan’s Journey and become a voice for Pediatric Cancer, by raising awareness for how woefully underfunded Pediatric Cancer is, as well as misunderstood.  We were shocked to learn babies got cancer (kind of a bad time to figure that one out, eh?) but I truly didn’t think it was possible.  Of course we knew about St. Jude and that “kids” got cancer… but babies!  We’ve made monthly contributions to St. Jude for years but naively we thought the necessary funding for research was piling up and it was just be a matter of time before there would be a cure.  Well, we were wrong on both counts!  The funding is terrible and until we do something about that, a cure will not happen.

Did you know the ribbon which represents Pediatric Cancer is gold?  Most of us know what the pink ribbon represents because people rallied for Mothers, Grandmothers, Aunts, Daughters and Sisters.  But what about our children?  What about the children and parents of tomorrow?

Throughout this journey with Declan we have learned some staggering statistics and they are completely unacceptable on so many levels but mainly because it means many other families will have to endure what we have just gone through in burying a son or daughter…a brother or sister…a grandchild…a nephew/niece…a friend.  These head scratching statistics are available via the web and we’ve highlighted some of these in previous blog posts.  But we would like you to consider the two thoughts below when you think of Pediatric Cancer funding and the associated research…

~ There are 2500 pediatric deaths each year because of cancer.  It’s estimated that approximately $1 billion in research is needed to develop a new drug/cure for each of the 12 most common pediatric subtypes.  Childhood cancer as a whole receives about $130 million/yr in funding. At that rate, it will take about 100 years to develop these drugs and 250,000 children will die.

~ Pediatric Cancer is the #2 overall killer of children in the U.S.  The #1 killer is vehicle related accidents.  Consider how much we as a society spend on vehicle related research (i.e. seatbelts, crash tests, car seats, booster seats, etc.).  Every time we buy a vehicle we invest in this research.  There is no comparable revenue stream in place for Pediatric Cancer.

It would only take $35 per American to solve for the first thought and save 250,000 children/families… this is why we must come together, raise awareness, develop a consistent funding stream and ultimately cure Pediatric Cancer!

We are dedicating ourselves to this journey…to one day have the gold ribbon as recognizable as the pink… to save tomorrow’s children… and to save tomorrow’s parents the heartache we are suffering.  WE CAN do this for our children, our grandchildren, our nieces, nephews and future generations!

We invite you to join us as we continue Declan’s Journey and change the face of awareness.  We are currently setting up a 501(c)3 Non-Profit organization and will provide details regarding our mission/goals in the weeks to come.  For now, please join us to help spread the word about Pediatric Cancer, tell someone about Declan or another child you know that is in the fight of their life against cancer.

The below is a tribute video for Declan put together by a dear friend…

Declan\’s 1st Birthday Balloon Tribute

Let’s start the conversation…

As you all know, we’re working to establish a foundation to raise awareness about where WE stand in the fight against this awful disease, how WE as a society can help, how WE can perpetuate the science, treatment and ultimately how WE can find a cure!  Based on what we’ve learned in the last 6 months we don’t think any of these goals are too lofty.

Establishing the formal foundation is going to take a little time but this is Pediatric Cancer Awareness Month and we want anyone interested in starting the conversation to get involved now.

That said, our neighbor (Thanks Michelle!) came up with a great idea that we think will help start the conversation and it will give all of us an opportunity to start showing off the GOLD RIBBON!  She bought a spool of GOLD RIBBON and fashioned them on all of the mailboxes on our street.  See below…

What if the gold ribbon became as recognizable as the pink ribbon?  What if all 6000+ followers of Declan’s Journey tied a gold ribbon to their mailbox, their neighbor’s mailboxes and started the conversation?  Tell them about Declan or another child and family you know fighting this terrible disease.  Tell them about how pediatric cancer has changed you and what the world needs to do to get on top of making a change.  I’ve included a few conversation starters/statistics that certainly made me scratch my head.  This all boils down to enough people saying “enough already!” and getting involved.

So start the conversation with your family, with your friends, with your neighbors, with your co-workers… tell them how shocked you are by the information you find below and what you’re going to do about it!

Wear your GOLD because WE can make a difference!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

What if I told you…

– It’s estimated that approximately $1 billion in research is needed to develop a new drug. Childhood cancer as a whole receives about $130 million/yr. At that rate, it will take about 100 years to develop a new drug for each of the 12 main subtypes of childhood cancer.
– Childhood cancer research is woefully underfunded compared to adult cancers, with shockingly low funding levels from the American Cancer Society (less than $0.01 per $1 public support) and the Leukemia & Lymphoma Society (less than $0.05 per $1 public support), and less than 4% of funds from the National Cancer Institute directed to all services associated with childhood cancer.

– The American Cancer Society’s Annual Report shows $1 BILLION in total public support and it’s Extramural/Intramural Funding in Priority Areas shows only $4 MILLION is directed to childhood cancers.  Less than half a penny of each of these dollars is directed to the #1 killing disease for kids under the age of 20

– For children between 1-19 years, cancer is the fourth leading cause of death overall, and the leading cause of disease related death.  It remains responsible for more deaths from ages 1-19 than asthma, diabetes, cystic fibrosis and AIDS COMBINED

– Approximately 46 U.S. children and adolescents are diagnosed with cancer every single day

– 1 in every 330 children will develop cancer before the age of 19

– National Cancer Institute’s Federal Budget was $4.6 billion from this total ALL twelve major pediatric cancers received LESS THAN 3% of this budget

– For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents

– Common adult cancers are extremely rare in children, yet there are many cancers that are almost exclusively found in children

– 1 out of every 5 children diagnosed with cancer dies

– 3 out of every 5 children diagnosed with cancer suffer from long-term or late onset side effects

– Common cancer symptoms in children are often suspected to be common illnesses and thus treated as such causing cancer to be found at later stages

– Attempts to detect childhood cancers at an earlier stage when the disease would react more favorably to treatment have largely failed

– Approximately 20% of adults with cancer show evidence that their disease has spread, yet almost 80% of children show that their cancer has spread to distant sites

– Cause of childhood cancers are unknown and at present, cannot be prevented

– Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives

– On the average, 12,500 children in the US are diagnosed with cancer each year

– On the average, one in every four elementary schools has a child with cancer

– 2,300 children and teenagers will die each year from cancer

– Several childhood cancers continue to have a very poor prognosis, including brain stem tumors, metastatic sarcomas and relapsed acute lymphoblastic leukemia and relapsed non-Hodgkin’s lymphoma

– Every day 9 children in the US are diagnosed with a brain tumor

– Brain tumors are the leading cause of cancer death from childhood cancer

– There are more than 120 different types of brain tumors, making effective treatment very complicated

– Because brain tumors are located at the control center for thought, emotion and movement, their effects on a child’s physical and cognitive abilities can be devastating

– At this time, brain cancer research is underfunded and THE PUBLIC REMAINS LARGELY UNAWARE of the magnitude of this disease

– The cure rate for most brain cancers is significantly lower than that for many other types of cancer

– The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million.  By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year

– We may spend 3-5 times the amount of research money per patient on most adult cancer cases than we do on children with cancer

– In general, children with Central Nervous System (CNS) cancer do not share the favorable prognosis of those with many other common pediatric neoplasms

In the coming weeks/months our family, friends and anyone else interested in getting involved will be working on establishing a foundation to honor Declan, to help current/future children (and their families) and to perpetuate awareness, understanding and the search for a cure!

Please wear your gold ribbons this month…  Tell people what you know about Pediatric Cancer… and, if you would, honor Declan by sharing his story, his life and how our beautiful little boy affected you.

REFERENCES:

CureSearch Website:
CureSearch represents the combined efforts of the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF)
www.curesearch.org/aboutcc

The National Cancer Institute: http://seer.cancer.gov/publications/childhood

American Cancer Society:  http://www.cancer.org/

Pediatric Cancer Foundation:  http://www.pcfweb.org/facts.php

I was prepared…

…to do a lot of things during your illness, Declan.  I understood you were up against a bad diagnosis, real bad, but I never truly believed you were going to be part of that statistic.  I never believed you would pass away.  So I prepared myself for all the things they said could happen over the course of your treatment and/or as a result of your chemo and radiation treatment.

I became prepared to handle the inevitable onset of nausea and vomiting (days of it in most cases) caused by most of the chemo you had.

I prepared myself to answer questions about your illness with family and friends, in a way that wouldn’t scare them as much as I was scared for what you were going through.

I prepared myself to calmly intervene on your behalf when in actuality on many occasions I wanted to rant a la Shirley MacLaine in Terms of Endearment.

I prepared to hold your hands and stroke your forehead with a smile on my face to help comfort you during some of the more yucky procedures you endured on a regular basis.

I worked hard to prepare and give your brothers as much age appropriate information about your illness without scaring them or making them scared of you.

I prepared myself for you to lose your hair, your deliciously soft baby hair.  I was even ready to shave my head when you became old enough to know the difference, and care. Ultimately, I wasn’t really ready for the day when you rubbed your hair, as you always did before you fell asleep, and came back with a fistful of it.

I prepared, no steeled, myself for the conversations in the “real” world when what I wanted to shout, “None of this matters…my baby has brain cancer!”  I do believe every one’s life is theirs and just as important so I don’t say this to belittle what anyone has/had going on in their life.  It’s theirs, it’s real and I truly am supportive of it but there were times when this feeling was still there.

I prepared myself to handle the emotions I felt when you and Cole were together because you never seemed as sick or as behind as you did when you were next to Cole.  I mean he’s your twin and the milestone differences were rough for me…Cole sitting up, reaching for and playing with toys for extended periods of time versus our elation over you holding your head up, while being assisted to sit, for 1 minute.  I was and still am (we all were) very proud of how hard you worked with your therapists…you really did try so hard.

I was prepared to care for you in a wheelchair if the chemo or radiation treatment harmed you in a way that required it.

I was prepared to learn, and teach others, sign language to communicate with you if you lost your hearing as a side effect of one of your regular chemo drugs.

I was prepared for you to live with me and Daddy your whole life due to the potential cognitive side effects of radiating your brain.  Dress you, change you, feed you, love you.

I prepared myself for all those things and so many more I can’t begin to write about.  But what I didn’t prepare myself for was walking on the beach Monday night with your Daddy and brothers picking up seashells (such a wonderful family thing to do) to bring home for you at your grave.  It was even my idea and it seemed like a good one but what it did for me was make me realize how I was not prepared for you to die.  Truly I was not prepared for the news we got on August 14th, that you were going to die…soon.  That you were not going to make it off the ventilator which meant I was never going to see you smile again. I mean I did prepare myself and we did all the right things during those days leading up to your death but I now know I wasn’t prepared.  How could I be?  How will I ever be?  I don’t think it really is possible.  It’s a whole new world.

I am sure this is part of the grieving process but wow I still feel like you should be here, that I should be packing my bag to go back to the hospital to be with you and tackle the next step.

Oh sweet baby boy, I’m so sorry.  I’m so sorry this didn’t turn out differently for you.  I’m going to try hard to work for a time when no other Mommy has to stand by an empty crib, hugging the last blanket you were wrapped in before you died, crying for the baby she can no longer hug in her arms but only her heart.

‘What if’s’

We just think different….my husband thinks I’m crazy to think some of what I’m going to say…maybe I am but I feel like this may be a ‘Men are from Mars, Women are from Venus’ thing  Really, I hope it’s the former because it really is torturous thinking.
It’s the ‘What if’s’ and the ‘Maybe I could have’s’ that are plaguing me.  And I do know. I know and really have to believe that I could not have done anything more (I have to so I can keep putting one foot in front of the other and look in the mirror every day) but tell that to my mind and my broken heart (especially in the middle of the night).  I guess what it boils down to is I miss him terribly.  I keep playing it over in my head. Ultimately, I know and still believe Declan’s plan was made and set before we ever intervened so I need to shut off this thinking and I know I will but I think this is some weird process my mind has to go through…hopefully it’s over sooner than later.
In the meantime, we made a decision to take the family out of town to reconnect and relax after a pretty rough 5 months on all of us.  (I can’t imagine what I would have felt like if my Mom had to spend months away from home with my sick brother…to have other people watch me, even people I love dear like my grandparents, so my Dad could not only work and take care of me but also spend time with my brother too.) What a terrible thing my kids have had to endure as well.  So we’re somewhere new to us to just get away.  And we’re having fun and while I’m super excited to be with them, share in their joy and our family time together…I couldn’t feel more guilty. I don’t think my kids realize (maybe I’m kidding myself there) but it’s all so raw and terrible and so irriversible. Life sucks…my child died.  Oh people I’ve heard complaining, I’d love to just tell you get over yourself but it’s not your fault so I’m not.

Remember when we were kids and could call a ‘Do over!’. My goodness how I’d like to do that and go back and answer for all the ‘What if’s’ and ‘Maybe I should have’s’ and maybe then I would know beyond any doubt this was the path Declan and us, as a family, were meant to travel.
Maybe it’s all supposed to be so raw so I will (to steal a sales guy term) ‘kill it’ for pediatric cancer. Maybe my life as a salesperson to this point in life was to prepare for the biggest sales job of my life…raising awareness for pediatric cancer.   I mean wouldn’t it be great if the gold ribbon actually DID become as recognizable as the pink ribbon???? (Did you even know the gold ribbon symbolizes pediatric cancer?  I didn’t.)  What if my sweet son dying (sobbing!!!) is what had to happen to make the fire so hot underneath me (and dare I take this step on your behalf) and all of Declan’s faithful followers to bring a much brighter light and more funding on this terrible disease.
One of the things I’ve heard and even said in my past…’I can’t imagine what it would be like to lose a child’. Well, now I do know and let me tell you…it’s infinitely worse than you can possibly imagine. So I’m going to work for my boys and for your son(s) and/or daughter(s) for a day that people will not say…’Hey why are you are you wearing that gold ribbon?’ but instead, ‘Hey…I support pediatric cancer too and isn’t the progress being made amazing?!?!’
BTW…I was ready to whine A LOT more about my ‘what if’ moments but Declan, via a strategically placed single yellow bloom on a plain bush I’ve been looking at the past few days, turned me around. :)
Sent from my iPhone

September is Pediatric Cancer Awareness Month!

What if I told you…

– The American Cancer Society’s Annual Report shows $1 BILLION in total public support and it’s Extramural/Intramural Funding in Priority Areas shows only $4 MILLION is directed to childhood cancers.  Less than half a penny of each of these dollars is directed to the #1 killing disease for kids under the age of 20

– For children between 1-19 years, cancer is the fourth leading cause of death overall, and the leading cause of disease related death.  It remains responsible for more deaths from ages 1-19 than asthma, diabetes, cystic fibrosis and AIDS COMBINED

– Approximately 46 U.S. children and adolescents are diagnosed with cancer every single day

– 1 in every 330 children will develop cancer before the age of 19

– National Cancer Institute’s Federal Budget was $4.6 billion from this total ALL twelve major pediatric cancers received LESS THAN 3% of this budget

– For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents

– Common adult cancers are extremely rare in children, yet there are many cancers that are almost exclusively found in children

– 1 out of every 5 children diagnosed with cancer dies

– 3 out of every 5 children diagnosed with cancer suffer from long-term or late onset side effects

– Common cancer symptoms in children are often suspected to be common illnesses and thus treated as such causing cancer to be found at later stages

– Attempts to detect childhood cancers at an earlier stage when the disease would react more favorably to treatment have largely failed

– Approximately 20% of adults with cancer show evidence that their disease has spread, yet almost 80% of children show that their cancer has spread to distant sites

– Cause of childhood cancers are unknown and at present, cannot be prevented

– Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives

– On the average, 12,500 children in the US are diagnosed with cancer each year

– On the average, one in ever four elementary schools has a child with cancer

– 2,300 children and teenagers will die each year from cancer

– Several childhood cancers continue to have a very poor prognosis, including brain stem tumors, metastatic sarcomas and relapsed acute lymphoblastic leukemia and relapsed non-Hodgkin’s lymphoma

– Every day 9 children in the US are diagnosed with a brain tumor

– Brain tumors are the leading cause of cancer death from childhood cancer

– There are more than 120 different types of brain tumors, making effective treatment very complicated

– Because brain tumors are located at the control center for thought, emotion and movement, their effects on a child’s physical and cognitive abilities can be devastating

– At this time, brain cancer research is underfunded and THE PUBLIC REMAINS LARGELY UNAWARE of the magnitude of this disease

– The cure rate for most brain cancers is significantly lower than that for many other types of cancer

– The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million.  By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year

– We may spend 3-5 times the amount of research money per patient on most adult cancer cases than we do on children with cancer

– In general, children with Central Nervous System (CNS) cancer do not share the favorable prognosis of those with many other common pediatric neoplasms

In the coming weeks/months our family, friends and anyone else interested in getting involved will be working on establishing a foundation to honor Declan, to help current/future children (and their families) and to perpetuate awareness, understanding and the search for a cure!

Please wear your gold ribbons this month…  Tell people what you know about Pediatric Cancer… and, if you would, honor Declan by sharing his story, his life and how our beautiful little boy effected you.

REFERENCES:

CureSearch Website:
CureSearch represents the combined efforts of the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF)
www.curesearch.org/aboutcc

The National Cancer Institute: http://seer.cancer.gov/publications/childhood

American Cancer Society:  http://www.cancer.org/

Pediatric Cancer Foundation:  http://www.pcfweb.org/facts.php