December 18^th, 2001, was the day I wrote my shortest email, simply “James just died”. Nine months earlier a very bouncy James was master of ceremonies as we launched The James Fund, hoping beyond hope to find a cure in time to save his life.

We didn’t.

But the very nature of that desperate attempt to fast track a cure was the impetus needed to spawn a whole new attack on that deadly childhood cancer called neuroblastoma. The James Fund supplied the funding to build a team of brilliant scientists at SickKids to research this disease in new and innovative ways. Radical, out of the box thinking was fostered, resulting in the discovery of the stem cell that causes this disease.

Scientists at the James Birrell Laboratories at SickKids became the hub of research collaborations across Canada and around the world. Other neuroblastoma families and compassionate volunteers joined in the fundraising efforts, and our collective commitment to a once orphan disease has been unwavering.  Effective treatment has been enhanced and a cure is much closer as a consequence.

But it bothers me that we have not yet found a cure.

James’ words “I am always going to be fighting cancer” remind us that we must keep going. Every week another Canadian child is diagnosed with neuroblastoma. 85% of them die. They’re the reason I’m writing you today.

You see, it’s not just about James anymore.

The James Fund is funding an important and promising body of research. We have named the “Megan McNeil Gene Discovery Project” in honour of an inspiring and courageous young teen who, like James, lost her battle with childhood cancer. Your gift today will bring us one step closer to a cure.

In 2009, James Fund donors paid to sequence the DNA of the neuroblastoma stem cell discovered through James Fund research. Now our goal is to raise $100,000 to identify drugs that are effective in treating neuroblastoma stem cells, with the intention of bringing those treatments to clinical trials. This work is some of the most exciting science on the planet, and will take place at the world-renowned BC
Genome Sciences Centre in Megan’s hometown, Vancouver.

Please join me in honouring Megan’s legacy through this project. This advanced research brings us one step closer to a cure. I know we can get there. But not without your support.

I know this is a tough cancer to beat. Our recent research revealed that tumour samples from ten different children were so different that treatments would need to be tailored in order affect their individual cancers. But when the pain is so great and I’m not sure if I can keep going I think of a seven year old boy who said “I am not giving up.”  Thanks for that reminder, James. I’m not giving up either.

Your support in the past has meant the world to my family and the other neuroblastoma families. Thank you for your compassion and commitment. Please give again today. Together, we
will beat the odds. We’ll find a cure.

Best wishes,

Syd Birrell
James’ Dad and Founder of The James Fund
Honorary Patron Tom Hanks

It was late October 1995 and Hannah had a bad cold. Hannah’s Mom is asthmatic so in the middle of the night when none of us were sleeping Kathy said we were taking Hannah to the hospital. We bundled her up, got in the car and took her to the Emergency Department at the Royal Victoria Hospital in Barrie.

This was not the first time we had taken her to the hospital in the middle of the night. When she was just two months old every joint in her body swelled up. It was scary. We didn’t know what was happening. When we were at the hospital I was humbled by the line of questioning we were being put through. I know staff was just doing their jobs trying to figure things out but I know I would never hurt my baby.

Hannah had her first immunization about a week before and the Paediatrician eventually told us that it was “Serum Sickness”, a reaction to the immunization. A few years later I questioned that original diagnosis.

This time at the Emergency Department they were looking for pneumonia. Chest x-rays were ordered and off we went to the Diagnostic Imaging Department. I went into the x-ray room with Hannah.

The device they use so they can get x-rays of a baby, a pigostat, is straight out of the Spanish Inquisition. A torture device. There is a clamp that goes around the baby’s chest to hold them in place. They are upright so there is a tiny bicycle seat to support them. I had to hold Hannah’s arms above her head. The x-ray was taken but Hannah must have gasped between breaths when they took the picture so they had to retake. Kathy couldn’t take my wailing baby out of my arms as I bawled hugging Hannah tightly in my arms.

They found a shadow most likely on the right lung and we were given antibiotics. We were instructed to come back for another x-ray when the infection cleared up.

A few weeks later we went back for the next x-ray. The shadow was still there. A CT scan was ordered by the radiologist at the RVH.

We went back a few weeks later for the CT scan. The next day, after the Radiologist read the scan, we were called by our family doctor. She told us we had to go to Sick Kids the next day, everything had been arranged. We were to meet with a certain doctor.
We headed to Sick Kids and met with the doctor. They wanted to do a couple of urine collections to do some testing, one of them was a twenty four hour collection. The next day after taking the long term collection for analysis a large group of people came into our room, Doctors, Nurses and Social Workers.

December 18, 1995 is the day my life … my babies life … changed. They told us that there was a tumor along the spine on the right side of Hannah’s chest. They told us it was neuroblastoma but they believed, because the tumor was calcifying, they believed it to be stage i. There was one test they still had to do but they were certain it would come back negative so they would do a bone marrow aspiration when Hannah had the surgery to remove the tumor.

She had the surgery two days later and they removed a goose egg sized tumor. We went home on December 24th but had to return on the 26th. On December 28th we were told that indeed the cancer had spread so it was now stage iv neuroblastoma.

Like I said … I can remember it like it was yesterday …

Listening to it struck a chord … I re-listened … and again …

“The world is neither fair nor unfair
The idea is just a way for us to understand
But the world is neither fair nor unfair
So one survives
The others die
And you always want a reason why”

Robert Smith, the main thrust behind The Cure, must have had a childhood cancer experience of some sort, how else can he sing about and feel the feelings I feel when I hear of another death of a child from their cancer? The song leaves me feeling empty just as the death of one of my kids and yet it speaks volumes.

I know I was driving when it struck that chord so when I got home I had to google the lyrics to make sure I was hearing what it said … It did.

“But the world is neither just nor unjust
It’s just us trying to feel that there’s some sense in it
No, the world is neither just nor unjust
And though going young
So much undone
Is a tragedy for everyone”

I also did more research on The Cure and Robert Smith and learned that he has supported the Teenage Cancer Trust in the UK.

Because childhood cancer is uncommon to hear the words of that song, the concerts they have done in support and the name of the band it really makes me wonder, no, scratch that, I’m sure Robert Smith has indeed had a childhood cancer experience.

Thank you Robert and The Cure for putting into song what so many of us I’m sure feel.

Please support The James Fund for Neuroblastoma Research. Help put the researchers in this lab out of work by helping them find a cure for neuroblastoma, the most common cancer of infants and the childhood cancer with the highest mortality rate.

Even though I like The Cure I don’t really want to hear “Where The Birds Always Sing” any more. I listen to it whenever I hear of one of my kids has died.

Always,
Hannah’s Dad

I’ve been involved with Ontario Parents Advocating for Children with Cancer since before it became a charitable entity. When the Paediatric Oncology Group of Ontario was putting together their five year plan to the Ministry of Health and Long Term Care a few years back I had the opportunity to co-chair the Parent Cluster. There were a number of other clusters such as Radiation Oncology, Solid Tumors and Adult Survivors to name a few and together the clusters made recommendations to POGO for their report to the Ministry.

One of the recommendations that wen’t forward to the Ministry was the need for another Satellite treatment clinic in the North Toronto/York Region area. I was able to use my influence to help bring the clinic to my place of employment, Southlake Regional Health Centre in Newmarket. The clinic has been operating for almost two years!

Today I went up to the Clinic because I was told that Camp Oochigeas, one of the camps for cancer kids was going to be there for a few hours to play with the kids and make their visit a little more pleasant. I stopped in and stood in the doorway. I don’t think I could have smiled a broader smile.

I wish I was good with names but that is one of my biggest weaknesses. The Camp Ooch councillor was amazing, I’m sorry I can’t remember his name. There were, it looked like, twins there one who was going through treatment and a little boy. The kids were probably in the five or six year old range. The councillor worked his magic with them and had them playing games, smiling and laughing. I checked back later and the councillor kept the boy’s mind off things playing with him as the nurse took the tegaderm off his port access. Both the nurse and the Mom were amazed saying he normally puts up a big fuss at that point. Not this time, he played and laughed with the councillor.

Camp Ooch is coming to the clinic on a weekly basis now to help our kids be kids while they live in the adult world of cancer … I’m still smiling hours later!

Thanks Camp Ooch … You Only Fail If You Fail To Try!

Dave

I had never thought about the guilt survivors feel … another time during my personal childhood cancer journey when I’ve been humbled.

Although Megan didn’t have neuroblastoma she believed she could make a difference in other kids lives. She looked forward to the day when no child would lose their lives to a childhood cancer. To that end she chose to support The James Fund for Neuroblastoma Research because she believed in the team at the James Birrell Lab and the work they are doing there for neuroblastoma research.

I’ll talk about the James Birrell Lab at Sick Kids and the wonderful staff there in other posts.

Another organization Megan supports through her campaign is the British Columbia Childhood Cancer Parents Association. This organization also has a special place in my heart even though I don’t live in British Columbia. BC Childrens Hospital was the first Childhood Cancer Treatment Centre in Canada to have a paid Parent Advocate. This Parent Advocate is a parent who has had a childhood cancer journey. This Parent Advocate was instrumental in forming the BC Childhood Cancer Parents Association. The role was modeled after a now defunct volunteer Parent Advocate at the Hospital for Sick Children in Toronto.

Parent Advocacy is nothing new. The role has been in place for many years throughout Europe. In North America the childrens hospital in Rhode Island developed the first Parent Advocate position over thirty years ago. The University of Rochester developed a program of study for those Parents who wanted to help other parents on their journeys. Through Lainies Angels assistance it is now an accredited program.

When funding wasn’t possible to keep the Parent Advocate at Sick Kids viable Ontario Parents Advocating for Children with Cancer, a provincial charity I chair, worked to ensure the program resurfaced at Sick Kids. I am so please to say that through funding from Lainies Angels and the Coast to Coast Foundation Against Cancer Foundation OPACC has been able to reestablish this invaluable program of support for families of children with cancer.

Childhood cancer and neuroblastoma have been my primary focus since not too long after my daughter completed her treatment almost sixteen years ago. If I didn’t have to work to pay the bills …

ALways,
Hannah’s Dad
Dave

I’m writing today about guilt.

In so many cases of childhood cancers the cancer is fast growing and aggressive and by the time a child is diagnosed it has quite often spread. This is especially the case with neuroblastoma, most kids are diagnosed with stage iii or stage iv. With neuroblastoma these are the most difficult cases. Depending on the age of the child at diagnosis the prognosis is very different. The younger the child, in general, the better the out come. Children are treated and quite often after the treatment is finished they find no evidence of disease. This may be the case for a month or two or even a longer time frame. Many of the older kids all of a sudden relapse. To all neuroblastoma families this is the worst news they could hear about their beautiful child.

Only a very small percentage of children diagnosed with stage iii or stage iv neuroblastoma survive, far far too many are taken from their loving families too early. It’s not fair.

My daughter is a one in ten. The summer of 2011 she will be sixteen years no evidence of disease. I couldn’t be happier that she is one of the few yet that being said there is a feeling of guilt that goes with her survival. Why did she survive when too many others don’t. It’s not because her Mom and I loved her more, not at all. It’s not because the medical staff took better care of her as she went through treatment. I know the staff at Sick Kids where she was treated are amazing and do the best for all children under their care and I’m confident the staff at other treatment centres do great work taking care of my kids.

So why?

At times it feels as if I’m flaunting that survival in the face of families who have lost their child. I know that sounds irrational and I also know those families are ecstatic that some kids survive. I’m sure other families of survivors get these feelings from time to time, perhaps at another child’s funeral or memorial service and even at the James Fund Neuroblastoma Family Retreat.

Some may call the guilt I feel irrational but I know its real. I wish other families could still hold their child; their brothers or sisters, in their arms and not just in their hearts. It’s not fair that I can and they can’t.

I will always be grateful that my Bubbaloo has survived and will cherish even the two minute phone calls just to touch base.

I Love You Hannah!

Most of us know at least one person we wished we didn’t and typically it’s because those people cause us some type of grief.  I know of a couple of people like that in my life but there is a large group of people I wished I never knew yet am so very glad that I can call them friends.  I’m quite certain these people wished they never knew me but are glad we’ve met.

On December 18th 1996 when my little girl. Hannah, was just eighteen months old she joined a club she had no choice in joining and her Mom and I didn’t voluntarily enrol her in.  On that fateful day all of our lives changed when doctors at the Hospital for Sick Children told us that little Hannah had neuroblastoma the fifth most common childhood cancer, the childhood cancer with the highest mortality rate often referred to as an orphan disease.

Our worlds were rocked … Our wee baby … just starting to toddle … just starting to become verbal … our precious little girl …

The folks I wished I never met but am glad I did are part of a larger neuroblastoma family I’ve met through The James Fund for Neuroblastoma Research.  Each and every one of them are truly strangers to me as I know very little about them yet I consider them part of my family because of a shared experience.  I care about each and every one of them just as I care for my brother and sisters and I know they care about me.

So this is the gist of this blog, I’ll write about neuroblastoma in particular and childhood cancer in general, how they have impacted me and things I’m doing to try and make a difference.  I’ll be telling some of the stories and memories I have of my personal neuroblastoma journey.  I’ll be introducing some of the major players in the James Birrell Neuroblastoma Research Lab at Sick Kids as well as some of these people I wished I never met yet am glad I have.

To all of my neuroblastoma family I invite you to submit stories or ideas; perhaps stories of things that have happened at events you’ve held raising fund for research or things that you’ve encountered on your journeys.

Thank you for reading.
Always,
Hannah’s Dad
Dave

For the past four years The James Fund has hosted a Neuroblastoma Family Retreat. This retreat brings together neuroblastoma families from all over. One year there was a family who came up from the Boston area. Another year a family came from British Columbia. I’ve met some very special kids who, like my Hannah, have lived for a number of years with no evidence of disease; I’ve met some of the most caring siblings of neuroblastoma kids and their equally caring parents and I’ve met bereaved families … too many bereaved families. I’ve also met some very wonderful yet shaken grandparents who have had to grapple with their grandchildrens’ diagnosis and in a few cases death.

The retreat wouldn’t happen without phenomenal volunteers who take our kids during the day to do crafts, help them cook, dress up, tie-dye, go on nature hikes and score their first goal playing hockey. The first time they volunteer at the retreat they come up not knowing anything about neuroblastoma yet quickly become part of our family and learn so much from all of us but mostly our kids.

I can remember a few years ago when Hannah and I arrived at the retreat one of the volunteers came running up to our car. She told us there was someone they wanted Hannah to meet. A few minutes later they brought the person over to us. I was seeing double. I was introduced to my Hannah’s four year older twin. Not only did they look so much alike, which is really hard as my Hannah has vibrant red hair, but both of their names are Hannah and even more incredible is both of their last names start with M. The older Hannah has spent the last three retreats volunteering! She is truly and amazing young woman in that she has spent her seventeenth, eighteenth and nineteenth birthdays volunteering her time with us. She’s one of my three favourite redheads!

When our kids are off doing whatever they do with the volunteers the adults have a number of options. They can talk one on one with someone from Sick Kids Spiritual Care team or they can listen as the top Researchers in the world speak of the latest findings in research and clinical trials. The whole ‘family’ can do some cartooning or other family oriented activities. Then again, if they don’t want to take part in any activities they can sit on the dock and take in the beautiful surrounds of Camp Oochegaes in Muskoka, Ontario and marvel in the autumn colours.

I get home from the retreat each year exhausted yet refreshed and feel so connected. I know each and every one of us there leaves on the Sunday afternoon sad that we’re leaving and looking forward for next years retreat.

Thanks to The James Fund for allowing our bigger neuroblastoma family to get together!

Always,
Hannah’s Dad
Dave

It takes more than wishes to fight neuroblastoma. It takes research. And research takes money.

That’s where The James Fund comes in. We fund some of the world’s most promising research into neuroblastoma, one of the deadliest childhood cancers.

In the last several years, we have:

• raised millions of dollars
• won numerous awards
• been recognized internationally for the research we’ve funded.

In other words, we’re getting closer to a cure. But we can’t do it without you.

We also give families fighting the disease:

• hope
• support
• community

We are run by and for families who know the battle against neuroblastoma first hand. We walk with those who are new on the path.

We see no borders, don’t care about profits and would desperately love to put ourselves out of business by ending the terrible scourge of neuroblastoma.

We promote international cooperation amongst doctors, labs and scientists, and put the lives of children before money, careers and egos. We  go beyond the science to support families directly. We help the newly diagnosed find courage and hope amongst peers, and have founded one of a handful of neuroblastoma retreats to give families a safe place to learn about the disease and share their experiences.

We seek to explain the disease and its repercussions in ways that families, supporters, sponsors and the public can understand.

That’s who we are to the world. But to families battling neuroblastoma? Some just say we’re the best chance their child has.

Help us end neuroblastoma. Go on. Put us out of business.