May 26, 2014
I suppose this year is a milestone because I wasn't an emotional wreck leading up to today, the anniversary of Ella's death, but there's nothing like the feeling when the day is upon you. Each year more memories slip away while lives get built up around her. Ella is there, but not in the everyday-interaction celebration-of-accomplishments, siblings-fighting-in-the-car kind of way. It's more in the way that I imagine a missing relative would be there--a presence as photos on a mantle, stories told and dates noted, wonderings and longings and speculations.
She would be nine. She probably would have been in fourth grade in the fall. Developmentally, this is around the beginnings of empathy for a kid. Of course, she always seemed strangely unselfish about what she had to go through, anyway.
This will not be a long post. We are trying to make this day about building the family, so we are headed out for a hike in this heat, hoping that the shade of the trail we picked will make it bearable.
I can't finish this, however, without noting the continued progress in medical treatments. There still isn't much "out to market" so to speak, but the scientific knowledge is definitely coming together, like particles appearing and joining to form a clear image. It's the final leap to treatments that is the most difficult feat, and my favorite recent story is of how using a massive blast of measles has wiped out blood cancer in a patient.
And I know I can sound repetitive on this, but this breakthrough comes again from a non-profit research and care center. It's not a university this time, but the Mayo Clinic. Please remember to support the systems that are generating this research--public and private research universities, government research and funding agencies, and non-profits like Mayo and St. Jude's. And, of course, don't forget the patient-centered non-profits like Sacramento's Keaton Raphael Memorial and Wyoming's Jason's Friends Foundation for providing needed assistance until immediate cures have come. Cancer is generally a long haul for families after the diagnosis.
May 25, 2013
Memorial Day weekend is always very personal for us and for the people who knew and remember Ella. The day that she passed falls on Sunday this year. We'll be remembering her by looking at photos and videos, and by telling stories, and honor her by spending quality time together as a family.
Audriel has been grappling with Ella's story for a while. She told Shannon the other evening that she would still love Shannon even if Audriel's angel took her away. She also said that she would "choose" her again as a mom, which is a reference to some of the reincarnation concepts Audriel has heard. Ever since Audriel learned that she had a sister who died, she has tried to process it in ways that make sense to her and also give her a feeling of control. She went through a period in which she described how she was friends with the fairies and how the fairies were going to bring Ella back. Then she had her phase in which she had special magic in which she would bring Ella back herself. She also had a period in which she was talking to Ella, who said she was going to come back.
Children have very distinct stages in which they understand--or don't understand--death, and so she has had to make sense of the situation within her own developmental contexts. We try to help her along as she goes; telling her the stories and providing basic explanations.
And, of course, we continue on ourselves, remembering Ella while enjoying Audriel.
I've said many times before how unfortunate I find it in the thousands of years of human history, Ella happened to be born apparently just a few years short of a cure for her cancer. The thing that I find remarkable as I see scientists closing in is from how many different pathways that they are finding possibilities. For instance, Duke researchers recently engineered the polio virus to fight brain tumors, and University of Virginia researchers are experimenting with throwing an enzyme switch. The University of Virginia research is exciting also because a potential drug already exists that has been used for other purposes.
I also continue to be impressed by the work being done at the University of Pennsylvania, in which they have apparently cured some patients of leukemia, although they themselves will not use the "cure" word. Whatever, they have treated patients who are now disease free, and have been for long enough to think that just maybe they might stay that way. I always like to add the reminder that these breakthroughs are generally coming from our nation's great research universities, not drug companies, and that the research is often made possible through public funds.
Although I lost my first daughter, I know I am lucky. I am grateful for what I have, which is a lot. And I am grateful to have had the time I had with Ella. For whatever reason, she got to enjoy so little of her time in this world, but we could enjoy her. And I have another little girl, who just celebrated a birthday. So this month, we celebrate one girl and remember another. And send love out to them both.
May 26, 2012
Five years ago today, we lost the girl we loved. It's been especially difficult this year for me (Tom). It felt safe to open myself up more, because it had been so long, but when you do that you just realize everything that you have been holding back.
One thing that we finally did this year is to put a fountain in our front garden that is dedicated to Ella's memory. It was an ambitious plan, which was based on surrounding the centerpiece with river rocks that were a part of Ella's memorial service. It involved buying two rocks in the East Bay that weigh more than 700 pounds combined, transporting them back home and into the yard, renting and using a commercial drill to create 16-inch-long, one-inch hole through the middle of one of the rocks, then setting up a basin and fountain assembly.
It was no easy feat, but what had really held things up was the basin. I had not been able to find anything specifically made for this purpose, so I bought a heavy-duty plastic basin from Home Depot and tried to find something that could support 700 pounds of rock, plus additional stones, while allowing drainage. I wasn't able to find anything commercial, and so I finally decided that I was going to have to design something and hire a welder.
Then I discovered that welders are harder to find in this automated age than you might expect, and I'm a poor industrial designer. So it languished until this winter when I just happened to search for "fountain basins" and found a commercial product that would work. I'm not sure if I just missed them the first time or if it's a new product line, but it was a lifesaver. Once I had that, it was relatively easy to finish the job.
So now, five years later, we have a fountain that our second daughter, Audriel, loves to play with. I take a glance at it daily, and the capstone is often rearranged, with new stones or bits of greenery in the small basin, and I know she has been playing there.
In addition, it is attracting animals seeking a water source. Our neighbor cats were already a problem, as the neighbors have too many and so the cats already were straying over to the soft earth and protected confines of our yard, but now they also have a water source. In addition, when the other night our dogs got very anxious at the front door we assumed it was a cat again, but when I got up in the morning there was a very strong skunk smell--good thing we didn't let them out.
For us, the fountain has finished the sanctuary that we built, with much help from our friends, four years ago. It is a retreat and entryway of great beauty that provides a place for contemplation and relaxed socializing. Most of all, it is a place to remember the daughter who we loved, and still love, so much.
April 19, 2012
Below is an email I sent today to The New Yorker, in response to their piece on immunotherapies. I was happy to see the article, and it built upon the information in a NY Times article I've already written about here.
It was heartening to see your piece on the renewed interest in immunotherapies. For those of who have lost loved ones to cancer, legitimate scientists who take risks investigating new avenues for treatment are heroes. In 2007, our one-year-old daughter Ella was diagnosed with metastatic medulloblastoma, and the local hospital invited us to participate in a "new" nationwide study. We began the treatment, but after research, we realized that the new study was just a swapping around of chemotherapy drugs that had been in use for many decades. Unfortunately, there weren't any other options.
Although our daughter lost her fight to cancer, we are excited for other families to see how close we may be to new treatments that are effective, and we hope, more humane. However, in a time when scientific inquiry is under attack and funding has decreased, scientific journals need to refine their approach to ensure that new treatments are vetted effectively. If the trend of retractions, documented in the NY Times and in other places, continues, it will further endanger additional funding.
Tom Hinds and Shannon Hickey
It's interesting timing that I read this the same day that I read a
blog piece, written by Chris Said, a neuroscience postdoc at NYU, that outlines some reforms to the journal system. I've read some recent criticisms and commentaries on this topic, but this was the clearest guidance I'd seen for effective change, and spurred me to include it in my email to The New Yorker.
March 12, 2012
One of Tom's coworkers will be shaving her head this Thursday, March 15, as a benefit for St. Baldericks, a children's cancer organization. You can donate here. Our thanks to Lori Ann and the event host, deVere's Irish Pub in Davis, for looking out for the kids!
February 20, 2012
It's Ella's birthday; she would have been seven today. Audriel has asked to bake a cake for Ella, so we'll be doing that today, along with looking at pictures and videos, spending time in Ella's garden, and talking with Audriel about what Ella's life meant.
As always, thank you to everyone who is thinking about Ella. Along with sending out our love to her today, we'll also be giving thanks and sending out our love to all the people who formed a community around her in health and sickness.
Tom, Shannon and Audriel
February 2, 2012
Waiting in line at Starbucks this week, I heard the song, "I Will Follow You Into the Dark" by Death Cab for Cutie. Despite being surrounded by people, I teared up. This song had been popular on the radio when Ella was sick, and hearing it again at this time of year was almost too much.
I associate that specific song with Ella because of an experience I had hearing it in the parking garage at Stanford's children's hospital. I was keeping a last-ditch appointment to find a miracle for Ella, and the song came on just as I was about to go inside.
In my interpretation of the song, the singer is lamenting the self-destructiveness of his lover. He knows that she will die, and he thinks he can follow her and provide comfort in the afterlife.
I sat with the engine off and cried while I listened to the whole song, as I knew Ella was dying. The cancer was metastasizing, and I had learned enough by then to know that the treatments she was receiving were hopeless from the start, causing her serious discomfort while extending her life by weeks, perhaps months. We had connected with some of the most noted medical centers for pediatric brain cancer treatment, joined an online support group that was aware of all the promising treatments, and sought all the alternative treatments, and no one credible knew of anything that would save our daughter.
My journey to see Dr. Paul Fisher felt like an act of duty, a way to face reality. This was important, as I knew that the brutal truth could liberate me from spending time researching and instead give me more time with my daughter.
Fisher was important because he was recognized as a doctor who saw things from angles that the traditional neurologists and oncologists did not. His educational background was broader than most in his specialty, and his degrees were earned at an academic best-of list: Stanford, UCSF, Johns Hopkins. If there was something I hadn't covered, he would know about it.
I came alone, as Ella was too far along in her journey to justify bringing her on such a trip. Shannon stayed with her at the hospital in Sacramento, as always.
I left the car, walked through the busy corridors, and met Dr. Fisher in a waiting area where other people were around. There was a lot of light in the room and cafe-like atmosphere that was somehow soothing. His manner was so accommodating and sympathetic that the discussion was easy. I told Ella's medical story, recounting the surgeries, the treatments, the test results. I then ticked off the other treatment possibilities that I had found, pursued and eliminated. He complimented me on my research. Did I miss anything? No, he didn't know of anything. Then, he said the phrase: You've done all that you can do. I extended the meeting a few minutes longer in case he thought of something he'd forgotten.
Back in the parking garage, I cried again. I thought of my daughter with her chemo port and tubes and metallic voice and pain, and how she still managed to find some joy in her toys and us and could still smile. The daughter I loved was going to die, and it was impossible to follow her into the dark. I pulled into the sunlight and headed home to the hospital in Sacramento, to see her while she was still alive.
September 13, 2011
I'm writing because there is an incredibly exciting development in cancer treatment. Researchers at the University of Pennsylvania have brought two patients who were at an incurable state of leukemia into more than a year of complete remission. A third has entered partial remission.
It's an inspiring story. Please read about it.
And it's not a story of drug companies. As you can see from this article quote, it's a product of university research:
"Even if the new T-cell treatment proves to work, the drug industry will be needed to mass produce it. But Dr. June said the research is being done only at universities, not at drug companies. For the drug industry to take interest, he said, there will have to be overwhelming proof that the treatment is far better than existing ones."
All the donations to philanthropic organizations that support disease research by funding promising studies at universities and medical centers, as well as the federal funding that go to these studies, is paying off.
Thank you for continuing to support this kind of research. We all know people who will eventually benefit from it--or it may be ourselves.
9/19/11 ADDENDUM: We have been honored to learn that Shannon's cousin, Sharon Colman-Lada, will be running with Ella's name on her back in the San Francisco Nike Half-Marathon in San Francisco on October 16. She is running as a member of the Leukemia & Lymphoma Society's (LLS) Team In Training to raise funds to help stop leukemia, lymphoma, Hodgkin lymphoma and myeloma from taking more lives.
If you would like to donate to support Sharon, please visit her page.
May 26, 2011
We know there are some people who will visit the site today and this weekend. Thank you for thinking of Ella and her family. It's been four years. Just last week one of Ella's old classmates mentioned to Audriel that she knew her sister Ella, and (of course) told her a story about how Ella bit her. Ella was always the sweetest, gentlest child until she had her personal space invaded, then the teeth came out.
You can't help but speculate how Ella and Audriel might have gotten along as sisters. I suspect they would have been a good match because as much as they look alike, their personalities are very different.
Over the past months, Audriel has been processing the news that she had a sister. She has taken stories we have told to her of Ella and placed herself in the stories in her retellings. She also spends more time than most kids, I think, trying to understand death. Not that she's against it fully: she has declared and carried out death sentences on a variety of insects. Her lines of questioning are still fairly easy because they are mostly centered on pinpointing when it happens and how. The tougher questions will undoubtedly follow.
I can't imagine how much more painful this would be for us without Audriel. She is not a replacement for Ella, but her own presence. Her life gives us the type of love and joy that otherwise would endure only in memory.
We want to thank all the parents who dedicate themselves so fully to cancer action. We tried, but so far it's been impossible to immerse ourselves in any sort of dedication to the cause, since it raises the most painful memories of all. But we feel that work is so important, in order to help current and future children who contract brain cancers. So we send our gratitude out to those parents who are stronger than us, and also to everyone who remembers Ella by supporting organizations like Alex's Lemonade Stand.
Thank you for thinking of Ella and remembering her. Her smile, her charm and her love still live within everyone who knew her.
Tom, Shannon and Audriel
February 20, 2010
Today is Ella's fifth birthday. We had not decided on a specific way to mark her birthday since she passed away, but this year we wanted to start some traditions that Audriel could participate in. So before Audriel's nap, we helped her light a candle in front of a photo of Ella and the three of us sang Happy Birthday to Ella together.
We then watched videos of Ella on the television. We started chronologically, and the early videos brought back nothing but good memories. Shannon was the proud, attentive mother and Tom the proud but unsure new father of a happy girl, who was gurgling and chattering her way through a seemingly normal first year.
In the first-bath video, all the family dynamics could be seen, with mom and dad discussing the temperature of the water as the animals all try to push their way in the bathroom, including Apple, our late kitty, who takes a swipe at Pierre as they both try to cross the threshold at the same moment. Tom swings the camera back to the bath in time to see Ella register surprise at the novel feeling of water on her body.
Audriel started to pay more attention to the second-year videos, when Ella was a toddler, someone Audriel could relate to. In a video chronicling Ella's first solo ride on a rolling horse toy, everything seemed normal. But it didn't take us long to find a video so painful that it made us both cry--Ella is being changed and we are entertaining her with a sock puppet. She suddenly puts her hand toward her head and begins to whimper. I look at the date of the video. It is six days after her second birthday, eleven days after she was diagnosed.
The week has not been easy. On the anniversary of her diagnosis, a finch flew into our window and died, and Audriel slipped on the back of the couch and broke her lip open on a window trim. We salvaged some good from the day with a walk on a farm road with the dogs, in which Audriel tried to sort out the difference between cows and goats while the sun set red in the horizon.
Three years gone and we know how many people still remember Ella and care about her. We spent time today reading some of the cards that people sent after her passing and looking at the book from her memorial service, and one of our favorite videos to watch was of her first birthday party, which was packed with friends. We continue to feel blessed by how many people reached out to us, helped us and were touched by her life.
We still bring her up in conversation, and those who remember her continue to share their remembrances. It's hard not to make comparisons between Ella and Audriel, but after May, it will just be speculation of how they might have been similar or different. They still look so alike right now that we don't think even Audriel can tell the difference with some photos as to whether she is looking at a photo of herself or not--we can still have difficulties ourselves.
As always, we want to thank you for keeping Ella in your heart and remembering her as the remarkable little girl that she was. With her friendliness and personality she brought joy into many lives and we will always be grateful for that.
Tom, Shannon and family
June 14, 2009
Greetings. Thank you to everyone who continues to think of Ella. We are amazed at how much Audriel looks like her, even if they do not share similar personalities. It can be confusing sometimes!
We are long overdue in mentioning a well in Cambodia that was funded in Ella's honor. After Ella passed, family friends Eric and Ellen Joss asked our friend Gil Hoelzer, a world traveler who repays the hospitality he's received in Cambodia by helping out however he can, to oversee the construction of a well that would memorialize Ella. The idea the Josses came up with was to help finance a charitable project that was also symbolic of Ella's healing, called Ella's Well. It was a beautiful idea that came to fruition in a village outside of Sihanouk Ville, thanks to Gil's dedication.
We were utterly overwhelmed with emotion and appreciation for the idea and energy that went into realizing this vision. To think that a whole community of people in Cambodia has access to pure water (something that is an issue in Cambodia) at a well that is also a memorial for Ella, where her beautiful smile is part of the experience for them is just amazing to us. You can see photos in the Creative Corner section of this site.
In May, we marked the anniversary of Ella's death. It was still very hard, two years later. I'm sure it always will be. We can not forget saying goodbye to her, and that is always our first thought associated with that date. Our other memories of her give us joy as well as sadness, but nothing can eclipse the emotions that come from holding your child as she leaves you.
In this same month that marked the second anniversary of Ella's death, marked the first birthday of Audriel, marked Mother's Day, news came across the wires that an effective new therapy for neuroblastoma had been developed.
For an apparent new cure to be found is huge news. Great, wonderful, huge news. It goes to show that the money being put into basic science research is paying off. One assumes that once this gate has been opened, others will soon follow.
We are overjoyed that lives are already being saved because these researchers have dedicated themselves to studying this cancer. Our happiest day will be the day when we know that all children can be cured of cancer (and that those cures are available worldwide).
There is also a bittersweetness to it. For millennia, we assume, children have suffered from these cancers. For Ella, or my cousin's daughter Sara Ann, or Penelope, or any of the other kids who have passed away recently from cancer, it is a relief to we parents to know that cures are in sight, but it is also frustrating to know these cures were so close, but not close enough to save our children.
It is urgent, then, to support as much research as we can now, so that other children do not need to come so close and still perish. I was recently asked what I thought was the best childhood cancer organization to donate to. Although I am still distressed that none of the top organizations actually publish in any easy-to-find way, if at all, the amounts of the awards that they are funding, I believe that Alex's Lemonade Stand is the best organization to support. It appears to have the most energy right now, and it has taken a holistic look at funding children's cancer research. It is inspiring to see parents who have lost a child have the energy to bring tremendous publicity and resources to children's cancer research.
We thank you everyone who reached out to us around Ella's birthday and those who donated to cancer organizations in her honor. It still means a lot to us to know that people remember her and miss her.
Tom, Shannon and family
May 24, 2009
Thank you for visiting Ella's page. We are observing Ella's life this Memorial Day weekend with just a few close family members. But we know how many of you out there are thinking of her right now and holding her in your hearts. It has been two years since Ella passed away. We long for her and wonder how she would have been as a big sister to Audriel, since she was so sweet but also so protective of her personal space, which little siblings tend to invade frequently. We also wonder what new interests would have developed by now, and of course, what she would have looked like, especially since she and Audriel look so similar.
Feel free to call if you feel a need to talk. We send our love to you.
Tom, Shannon and family
May 24, 2009
Ella's godmother, and her boyfriend Todd are
running in the New York Marathon to benefit
cancer research. Diane is running in memory
of Ella, raising money for children's cancer
research through the Aubrey Fund, which is dedicated
to researching pediatric cancers. Please
donate to support her run. She has committed
to raising $5,000 by October 15.
Todd is running to honor his mom, who has survived
breast cancer twice. He is raising money for
breast cancer research. You
can read more and donate to support breast cancer
research on his page.
June, Diane and Todd ran in the San Diego Rock-and-Roll
marathon. Diane ran in memory of Ella and also
helped break the world record for running Elvises
(or Elvi, as you prefer). Diane ran as Ella-vis,
a cross between Ella and Elvis. She was featured
in the race
In addition, our friend Wendy is swimming in
memory of Ella across San Francisco Bay as part
of the Swim Across America benefit. Please support
her at Wendy's
Swim Across America page.
We are so grateful to everyone who is raising
funds for pediatric cancer research. It really
is making a difference. Just in the past few
has come out that the genes have been mapped
for glioblastoma, and while this deadly
brain cancer is even more complicated than initially
believed, the research progress also shows some
new ideas for treating it.
Your donations and your help bringing attention
to cancers such as medulloblastoma, which Ella
had, are helping us to get closer to a cure.
Thank you for supporting Diane, Todd and Wendy
as they put their bodies on the line for cancer
a totally different subject, here
is a photo of Audriel, who is now almost
five months old. She was born on Mother's Day
and couldn't have been a better Mother's Day
present. Like Ella, Audriel is very tall. She's
off the charts for height and can already wear
clothes for a 12-month-old. So far she is very
even-tempered and pretty chatty. She seems to
like the sound of her own voice; we like it,
too. We are very, very happy to have her in
Tom and Shannon
We'd like to start this update with a call
for volunteers. We're helping to introduce a
new piece of legislation that is specific to
children's brain cancers, and we need help making
calls to update a contact list of brain tumor
organizations. The task is big enough that with
our current resources we could use assistance.
If you can help with this, please contact Tom
at (530) 400-7087 or firstname.lastname@example.org.
In addition, we continue to press to get the
Childhood Cancer Act of 2007 passed, which
has made it out of committee in the Senate.
(WooHoo!) We encourage you to call your senators
again to voice support for it, as it will be
coming up for a vote. Please tell them that
you want them to support S. 911, the Conquer
Childhood Cancer Act. You can look
up your senators here.
Unfortunately, the House version of the bill
still has not made it out of committee, so it's
also worth a moment to call your representative,
but only after you've called your senators!
You can find your representative at GovTrack.
Okay, now on to the personal news. As many
of you may have heard, the good news is that
Shannon is expecting in late April! We know
it's going to be a girl. We are very excited.
We know that she will not replace Ella, but
we are looking forward to having another child
in our lives.
As we near Shannon's due date, we are also
looking to February. It's difficult to describe
the process we are undergoing as we near both
Ella's birthday and the one-year mark of when
she was diagnosed. It still varies by day. We'll
never stop missing her or wondering how she
would have turned out.
We made a change to Ella's web site in the
section entitled "What
You Can Do." We'd inserted a somewhat
unrealistic instruction in there, guiding people
to call their local hospital to see if there
is a family who they can help. In reality, this
is probably not going to happen, so we changed
it to advice on how to help a family they might
know who is affected by childhood cancer.
The original idea came from the frustration
we have that kids with cancer are like an invisible
presence in our society. They are sequestered
in cancer wards in the hospital and when they
are home, they spend a lot of time isolated
from outsiders because they can't risk getting
an infection. Every time we drive by a hospital,
we can't help but think of the kids who are
there, still fighting their battles.
Unfortunately, health issues have continued
to affect the people in our lives. Most significantly,
we've had two people close to us suffer strokes
in the last few months and another close relative
who recently finished a successful chemo treatment
for cancer and has had a major operation to
remove some organs that were affected. Tom is
currently up in the Northwest to help out.
We know that we are not alone in facing these
things. For instance, we can't think of anyone
who hasn't been affected by cancer in some way,
and even before Ella was sick, it had already
impacted our lives. Losing Ella has really made
us hope that with this coming presidential election
we'll get a leader who will sincerely work hard
to improve the lives of the people in this country,
including making it a priority to find the causes
and cure for cancer.
In conclusion, despite some ongoing challenges,
we are finding moments to laugh and enjoy life.
We are blessed to have friends and family who
bring us great joy. Thanks for your continued
support, thoughts, and well-wishes.
We hope you all have a wonderful year.
Tom and Shannon
We want to extend our deep gratitude to the
people who have been working on this Web project,
especially Zac Denning and Jeremy Postlethwaite.
They have spent so much time on the project,
and we can't express how happy it makes us for
Ella to have her own home on the Web. The site
was created and built by Zac, an amazing artist
who also provided the original illustrations
that make this site so personal to Ella. Meanwhile,
Jeremy has been programming some special functions
to make the site more interactive in the future.
If you came over from CarePages and would like
to continue receiving occasional e-mail updates,
please take a second to e-mail Janet
with your e-mail address. We do not have access
to the CarePages distribution list, so we need
to remake it from scratch.
Please take some time to check out the site.
There are some nice surprises, including all
works that were inspired by Ella, videos
in the Photos
& Video section, a cool animated graphic
in the Visualizations
and Prayers section and more. In addition,
please make sure you visit the What
You Can Do section and learn about how you
can support the passage of the "Conquer
Childhood Cancer Act of 2007."
It has now been three months since Ella passed
away. We can still hear her voice and quote
her catchphrases. We speculate about what she
would be interested in now and imagine how she
might have grown. We miss her as much today
as when she passed away.
There's a cliché among people who know
this sort of loss that everyone deals with it
differently, and it's true. The most surprising
thing for me is the strength that both Shannon
and I have. Somehow, you get through.
One might expect to undergo huge changes when
something like this happens, and we have. I
am wiser and more compassionate. I am much more
aware of how I spend my time. I think seriously
about death for the first time in my life. I
realize what it means to be profoundly connected
to family and friends.
Losing Ella has sent Shannon down a path of
attempting to understand death. She would characterize
her process as trying to learn about and understand
the spirit world into which Ella has entered.
She does not believe that Ella is gone permanently,
rather has transitioned into this other world
where she is surrounded and supported by love
and wisdom. Through dreams and meditation, Shannon
hopes to maintain some kind of meaningful connection.
This exploration as well as the long conversations
about life and death with friends and family
has brought Shannon the most comfort during
this time of grieving.
Outside of our personal processes with grief,
Shannon and I are actively learning more about
the disease that took our daughter. We've done
a lot of reading as well as talking with some
researchers, such as Matthew
Scott (Stanford), Elva
Diaz (UC Davis) and Tarik
Tihan (UCSF). In addition, I've checked
in with some folks associated with non-profits
and other miscellaneous organizations, and Shannon
and I have both met with the Sutter hospital
staff about our experience there. We are very
grateful at the generosity that people have
shown with their time and in helping us understand
cancer and where we are toward finding a cure.
It's incredible how much the influence of ordinary
people has forwarded the study of childhood
brain cancers. Many of these people were parents
of children with brain cancers, but not all.
If we have learned anything from the past months,
it's that the more that members of society are
involved in asking questions and demanding action,
the more progress is made.
Cancer remains the number one disease killing
our children, and number two killer of the rest
of us in the United States. There has been a
lot of progress in cancer survival rates since
Richard Nixon declared a "War on Cancer"
in 1971, but cancer is still responsible for
approximately 25% of adult deaths in the United
States. That means that all of us still have
a roughly one in four chance of dying from cancer
(with some adjustment in calculation on how
unhealthy a life each of us leads).
In addition, the treatments for cancer are
still generally symptom-based and can be destructive
in and of themselves. One thing that Shannon
and I were shocked to learn is that some common
cancer treatments are carcinogenic themselves.
So a patient who has their cancer "cured,"
may then contract a different cancer later because
of their original treatment.
We were also surprised to learn how little
we still know about cancer. We have come to
the conclusion that most of the answers for
curing cancer lie in basic science research.
Basic science research gets to the fundamental
understanding of the disease, and presents new
knowledge that can be translated into new drugs,
diet changes and other therapies that can be
used to control or cure diseases.
Unfortunately, this sort of research is not
well enough funded right now. One of the researchers
we spoke to said the peer review process had
broken down, because the funds available for
research through the NIH has been reduced to
the extent that decisions about what gets funded
is now almost arbitrary. At the following link,
you can read about NIH funding trends and see
a graph showing these trends: http://content.nejm.org/cgi/content/full/354/16/1665
According to the researcher, it used to be
that NIH funding sufficiently supported most
studies that showed promise, and rejected those
that did not. The peer-review system fostered
a coherent progression of scientific knowledge.
Now, many of these promising studies are passed
over and scientific knowledge is progressing
in fits and starts. Progressing, yes, but not
It's for more than just humanitarian reasons
that we should be supporting such basic science.
The discoveries fostered by the study of basic
science are an economic engine for the country,
and dollars invested in basic science can be
seen as dollars invested for a larger payoff
down the line.
Fortunately, the United States' track record
of philanthropic giving has also helped to move
cancer research along, whether through accumulations
of modest donations through such organizations
Lemonade Stand or through donors who give
away more than $100 million each, such as apparel
magnate Sidney Kimmel or industrial magnate
Government funding and philanthropic support
are both critical to the effort to find better
methods for treating, preventing and curing
Shannon and I applaud Lance Armstrong for using
his position to bring the discussion of cancer
to the table for the next presidential election.
We hope you keep in mind the positions of the
presidential candidates on this subject when
you go to vote, and when we do have a new president,
that you'll keep this issue on her or his table.
It could be your own life you're saving, after
all, not just our children's.
Thanks for reading our thoughts and for continuing
to care. Here's wishing you a peaceful fall.
Tom and Shannon
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