New Study at St. Jude

A wonderful event has taken place at St. Jude that may prove a big step in saving the lives of children, like Vivi, who have rare brain cancers but are too young for traditional radiation.

From the St. Jude press release:

St. Jude Children’s Research Hospital and the University of Florida Proton Therapy Institute have formed a collaboration to provide proton therapy for St. Jude patients. The announcement follows the approval of the first clinical study to evaluate the use of proton therapy for rare brain cancers in children younger than 3 years old.

Under the clinical protocol, St. Jude will refer patients to receive proton therapy at the UF Proton Therapy Institute in Jacksonville, Fla. The purpose of the clinical study is to improve response rates and decrease treatment-related side effects.

Proton therapy is being studied as a way to reduce potential damage to healthy tissue that may result from conventional radiation therapy. This is especially important in treating children with brain and spinal tumors to potentially avoid interference with development, growth and cognitive functioning.

I have known, of course, that at some point (and probably soon) there would be a research development or new avenue of treatment that had the potential to help Vivi or even cure her. Although this particular trial might not have been right for Vivi, I remember praying so hard for something in science to change so that she could receive radiation. For children with brain tumors, the ability to receive radiation dramatically improves prognosis. But those prayers (like so many) went unheeded.

Of course I am hopeful and thrilled for the families who will benefit from this treatment, and I am carefully considering that donations we made in Vivi's name to St. Jude were at least a small part of making this possible. But, that does not take away much of the sting associated with thinking that if this could have happened just one year sooner, perhaps Vivi could have participated or benefited from it.

No, I am not bitter - just sad.

REMINDER

Just as a reminder, as I mentioned a few weeks ago, on this upcoming Monday September 28 please go out to lunch or dinner at Chili's, because the restaurant will be donating all of that day's profits to St. Jude Children's Research Hospital.

Don't MAKE ME link back to all the wonderful things St. Jude does, not the least of which that Vivienne would probably not have been alive this time last year if not for St. Jude. Would not have had Thanksgiving, or Christmas. Would not have been with us to ring in 2009. Would not have ridden in a private jet, or been a Homecoming Queen.

Angry

Today was the hardest day in a long time.

All day, I've been crying thinking about Vivi. And everything is setting me off - from people who want to deny healthcare to sick people, to those who take life for granted, to the mere existence of people who have never had to watch their perfect child - the best child ever born - die. I am so filled with anger and sadness, today, that I might explode.

I'm not sure I could ever love anyone as much as I love Vivi, and what scares me right now is that (today at least) I don't even want to try anymore. I know that I will, BECAUSE I love her (and what she taught me) so much, but it seems too much to ask at the moment. Waking up tomorrow morning feels like too much to ask. Having a normal conversation without snapping is, as you know if you've tried to talk to me today, too much to ask.

I had some equine therapy today, and an hour or so at Heaven's Gate Farm always helps. And I am sure to have a good weekend, with family, but....when everything in the world sets off tears, resentment, anger, self-pity and thoughts of Vivi, it seems easier to disengage from the world until the hardest bit of these feelings passes by. I know that they will, and I do believe at heart all the positive, spiritual and loving associations I have made, but right now - none of it helps. I'm too angry.

Commenting

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Hate Mail

I have some thoughts I would like to get out of my head, about a very nasty fellow named Rhabdoid Cancer. Since he doesn't have his own home, or a mailing address, or family that I can pass the message through, I am writing an open letter.

Dear Rhabdoid Cancer:

I hate you. There is nothing in the entire history of this world (or any other, if there are others) worse than you. There is no limit to the bad things I want to do to you.

You kill babies. You killed Vivi, and Aiden, and Diesel, and Bubba, and Ben, and Jonathan, and Mackenzie, and our new friend (in Heaven) Harry. These sweet, kind, loving, beautiful, innocent little babies are not alive because of you. Sure, I can remind myself that they are Heaven and are at peace rather than hurting, but I don't forgive you for killing them. You've hurt other babies, too, like Gabriel and Owen and Declan, who, no thanks to you, are doing well. But you caused them hurt and suffering for no good reason. But I hate you most for the babies you have murdered.

You've done horrible things to those babies' families. Their brothers and sisters have had to learn about death because of you. Their parents have to live with grief. Every day, thanks to YOU, I wake up missing the sweetest, best person I ever met. Every day, I am jealous and angry about other families who haven't had the misfortune of meeting you (or any of your other cancer comrades). I am a better person thanks to knowing my Vivienne, but I don't forgive you for forcing me to rise to the challenge of losing her.

I hate you, and I wish in turn that I could kill you. I would stop at nothing to eradicate you completely from the face of this earth, forever. But because you are sneaky and sly, and you strike so hard but so rarely, you've neutralized many of the tools I have to fight you. Too few people have seen your ugly face, so too many people are saddened by the story of a child you've killed but move on with their lives. There are many dedicated doctors, researchers and geneticists fighting you, but you don't fight fair. You kill babies, before we even have a chance to try to stop you.

Every time, like today, that I grow to know another child that you are attacking or have killed, I hate you more. Why don't you turn on selfish, violent, cruel, evil adults instead of innocent, sweet, tiny, kind babies? I would not mind so much if I heard that Rhabdoid Cancer had claimed Charles Manson or Dick Cheney, the board of directors of Halliburton or even Kanye West. But when I hear of another tiny child who was happy and playing one day and suffering your curse the next day, I instantly become a pathetic combination of sad and hateful.

So, you are a disease, brought on by bad luck and a faulty copy of DNA. You aren't a person, and I can't get through to you with a guilt trip or a tirade of hate. But if I could, you would be toast. I have more than enough of both to throw at you. I would make you look at pictures of the smiling, happy babies you've murdered, and sit and talk with their parents and siblings and other family members. And I would hurt you until you regretted your effect on every single one of those lives.

But since I can't do that, I am going to fight against you the only way I can - by a malicious campaign against you designed to let every single person I can reach know how utterly, terribly, un-remorsefully, selfishly, cruelly horrible you are. I know too many of those people will momentarily feel sad and then move on to their beach vacations, concerts, new fall TV shows and whatever else interests normal, happy people whose lives you haven't attempted to destroy. But if I can turn one extra person against you, and convince them to donate time, money, voice or otherwise to beat you out of existence, I will feel a little bit better.

I hate you, Rhabdoid Cancer. I despise you. And I will die before I lay down my guns and give up fighting against you. I am stubborn, always, and you have picked the wrong woman to mess with, this time.

Your sworn enemy,

Mary Martin, mother of Vivienne Martin, an Angel in Heaven

Okay, I feel better for getting that out!

Childhood Cancer Awareness Month

I have been contemplating a post honoring Childhood Cancer Awareness Month for quite some time now, but the death of Patrick Swayze to pancreatic cancer yesterday encouraged me to pull the trigger.

As a family who has faced cancer, my heart goes out to Patrick Swayze's family and friends, those he loved and those whose lives he touched. I generally do not jump on the celebrity-praise bandwagon, but here I am thinking of him as an individual. As a man who had parents, romantic partners, and a real life in our world beyond what we saw on screen and in tabloids. The death of any human being to cancer is a tragedy.

Without a doubt, we should driving funds, resources and support toward all human beings (regardless of age, race, diagnosis or disease status) that face cancer. For me, for obvious reasons, childhood cancer has a particular priority. Children can't advocate or act for themselves, but they rely on parents and other adults to create a healthy world for them.

I won't say that we are failing, but we could certainly be doing better. From 1975 through 1995, the incidence of cancer diagnosis in children increased by about 0.8% (that is, almost 1%) per year. Remarkably, during this same time frame, the mortality of cancer in children declined 40%. More children are being diagnosed with cancer, but fewer are dying of it. Source: Childhood Cancer Mortality.

Although mortality is on the decline, we are not living up to our obligation to care for and guard children. For example, in 2008 the National Cancer Institute spent $264,641,062 on leukemia research, with less than 20% allocated toward pediatric leukemia. Source: NCI Funded Research Portfolio. Compare that to the vast amounts spent on adult cancers, and the funding disparity is obvious. Children are simply placed on the back burner from a funding perspective.

This inequality has a direct effect on the treatment of children diagnosed with cancer. New drugs are developed for adult cancers and only later tested to see if they happen to work for childhood cancers too. It is an extremely rare occurrence when a drug is researched, designed and implemented to treat pediatric cancer as its primary goal. By the numbers, the statistics are chilling:

In fact, of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period. Source: Molecular Cancer Therapeutics, August 2006.

FIFTEEN new cancer drugs labeled and approved for children over 55 years, compared to ONE HUNDRED AND TWENTY for adults. We should be ashamed of ourselves.

To see the personal effect that this is having, all you have to do is get to know the stories of the children in heaven that are linked on Viva la Vivi. Vivi, Aiden, Diesel, Jonathan, Ethan, Owen P., Mackenzie, Bubba, Ben. These sweet babies are just NINE of the innocent children who have not had the chance to grow up, will never be movie stars, will never have a romantic relationship, will never have a job, will never graduate high school, will never have the joy of being parents.

As a nation, we mourn the death of celebrities from cancer and rightly so - we should mourn every death to this truly horrific disease. I will never engage in tragedy-comparison and say that children's deaths are somehow "worse" than the deaths of adults who had the opportunity to engage in some or all of those momentous life events, but I will say that it staggers me that we as a society comfortably go on with our lives and accept this situation.

So, don't honor Patrick Swayze by updating your Facebook status about his movies or buying a memorial issue of People magazine. Honor his life and battle against this disease by supporting cancer research in any way you can and of any kind that touches your heart most. And honor Vivi and her friends in Heaven by sharing the message for Childhood Cancer Awareness Month.

Mark your Calendar: September 28

Join Chili's in the fight against childhood cancer.

Create a Pepper.

Chilis is donating all profits at its restaurants from September 28, 2009 to St. Jude Children's Research Hospital! Please mark your calendar to visit the restaurant that day and give them a big THANK YOU!

Please Help: Adrenocortical Carcinoma

Viva la Vivi has been asked to get involved and spread the word, as a research study may begin if more participants with a rare genetic disorder can be found.

I have been asked by a family (from The Acreage) who have two children with Adrenocortical Carcinoma as well as Li-Fraumeni syndrome which is a rare disorder that greatly increases the risk of developing several types of cancer, particularly in children and young adults.

What genes are related to Li-Fraumeni syndrome?

The CHEK2 and TP53 genes are associated with Li-Fraumeni syndrome.

More than half of all families with Li-Fraumeni syndrome have inherited mutations in the TP53 gene. TP53 is a tumor suppressor gene, which means that it normally helps control the growth and division of cells. Mutations in this gene can allow cells to divide in an uncontrolled way and form tumors. Other genetic and environmental factors are also likely to affect the risk of cancer in people with TP53 mutations.

A few families with cancers characteristic of Li-Fraumeni syndrome and Li-Fraumeni-like syndrome do not have TP53 mutations, but have mutations in the CHEK2 gene. Like the TP53 gene, CHEK2 is a tumor suppressor gene. Researchers are uncertain whether CHEK2 mutations actually cause these conditions or are merely associated with an increased risk of certain cancers (including breast cancer).

Read More about Li-Fraumeni Syndrome (TP53 mutation)

http://ghr.nlm.nih.gov/condition=lifraumenisyndrome

This family along with St. Jude Children's Research Hospital would like to know if there are any other children in The Acreage or surrounding areas with this specific condition. If we have one other child they will conduct their own independent study (do not know what that will entail).

Read more about Adrenocortical Carcinoma:

http://www.stjude.org/stjude/v/index.jsp?vgnextoid=f63c061585f70110VgnVCM1000001e0215acRCRD&vgnextchannel=bc4fbfe82e118010VgnVCM1000000e2015acRCRD&SearchUrl=search_results.jsp&QueryText=adrenocortical%20carcinoma

Thank You!

If you have a child battling Adrenocortical Carcinoma, and are interested in sharing your name or participating, please contact Viva la Vivi or The Acreage Cancer Study.

Thank you!

Thank You

This post is just a big, loving, teary-eyed THANK YOU to those who have not forgotten about us.

To the people who send nice text messages when we have stuff going on; To those who check in by email or phone or the guestbook or carrier pigeon or however, to send love; To those who let me talk about Vivi on and on and on; To those who aren't to scared to talk to me about it; To those who give me permission to open up by reminding me of their favorite thing about her; To those who don't make me pretend I can get back to normal or my life is a-okay; To those who distract me and give me nice things to be excited about and thankful for; To those who put up with my positively feral wild mood swings:

Thank you so much. I couldn't do it without you.

Daddy Feelings

Last night I had the pleasure of being visited by Vivienne in my dream. It was a somewhat difficult dream, in which Vivi had just been placed in my arms, back from wherever. My thoughts in the dream were just entirely thankful for an opportunity to once again hold my beloved daughter, and luckily for me, these thoughts and feelings lingered with me when I woke this morning. Today, I am a little extra sad and missing her greatly, but I do feel as though I saw her last night, and did in fact get to hold her.

This is especially wonderful for me and came at a great time. Since she left us, I often feel that day by day I am doing some kind of wrong by not practicing that which I learned I was best at: being a father. And so last night, even so briefly, I feel as though I had some kind of opportunity to perform. Today I am full of love for her, which translates into love for our future child(ren), which also translates into me feeling a yearning for, and feeling very impatient about this surrogacy process. I dedicate my thoughts for the rest of the day to brainstorming ways to collect this absurd amount of money we need to expand this family, inspired by, and in full tribute to: the memories of Vivi.

An Anniversary, of Sorts

A date upcoming has been constantly in my mind. This year, August 12 means so much more than my birthday (although it looks like this one will be very romantic). I'll let the email speak for itself:


I'll have more to say, maybe tomorrow. Right now I just can't stop thinking about how difficult the decisions we made over the past year were. Justin and I are at our laptops across the table in Maine, and I keep peeking over thinking I am lucky, blessed, to have such an incredible husband by my side. And Vivi, of course, blessed to have such a loving Father, who would and did move (metaphorical) mountains for her.

Wall of Angels

Vivienne has been honored by inclusion on the Wall of Angels, a stunning (but tear-jerking) visual tribute to children who earned their angel wings. Please visit the site, and take a minute to think about not just Miss Vivi but also the other families.

Vacation

Well, we are leaving for Maine tomorrow morning. I expressed sadness today, wishing that Vivi could come on vacation with us. I can't stop thinking about, wishing for, Vivi at 15 months old coming with us to Maine with her own toy fishing set, emulating beloved Daddy. Justin, wisely, reminded me that she will be with us there, that she is with us wherever we go.

I couldn't help but think of my favorite nursery rhyme, which I read to her frequently in Memphis:

Winkin', Blinkin', and Nod

Winkin', Blinkin', and Nod, one night sailed off in a wooden shoe;
Sailed off on a river of crystal light into a sea of dew.
"Where are you going and what do you wish?" the old moon asked the three.
"We've come to fish for the herring fish that live in this beautiful sea.
Nets of silver and gold have we," said Winkin', Blinkin', and Nod.

The old moon laughed and sang a song as they rocked in the wooden shoe.
And the wind that sped them all night long ruffled the waves of dew.
Now the little stars are the herring fish that live in that beautiful sea;
"Cast your nets wherever you wish never afraid are we!"
So cried the stars to the fishermen three - Winkin', and Blinkin', and Nod.

So all night long their nets they threw to the stars in the twinkling foam.
'Til down from the skies came the wooden shoe bringing the fisherman home.
'Twas all so pretty a sail it seemed as if it could not be.
Some folks say 'twas a dream they dreamed of sailing that misty sea.
But I shall name you the fisherman three - Winkin', Blinkin', and Nod.

Now Winkin' and Blinkin' are two little eyes and Nod is a little head.
And the wooden shoe that sailed the skies is a wee one's trundle bed.
So close your eyes while mother sings of the wonderful sights that be.
And you shall see those beautiful things as you sail on the misty sea,
Where the old shoe rocked the fishermen three - Winkin', Blinkin', and Nod.

So, I can picture Vivi in the heavens now, fishing for stars with filigree nets and laughing happily to see her parents in Maine enjoying a more mundane version of the act. I could cry, thinking about it, but there is a mix of sadness and equal parts love. Since I can never regret my love for Vivi, it is a manageable feeling.

Dreaming of Things That Will Never Be

I can't stop thinking today of what Vivi would be like, what she would be doing and saying, right now, had she not been afflicted with the awful AT/RT beast.

Whenever I see little kids about her age, pictures of her cousins, or even older little girls, I think about my Vivi. I selfishly wish I could be fingerpainting with her, playing games, laughing, hearing her speak. I still have moments, every once in awhile, where I haven't been thinking about the tragedy of brain cancer and I remember what happened. That first moment is so frequently a little shock. I always wonder how I was just fine a minute ago, and then now, remembering that my daughter is dead, that I couldn't save her.

She will never, ever have a first day of school. She won't ever get to go on another vacation (but she did get one - to Maine - where she learned to laugh). She got to ride CP Pony, and I am so thankful for that. She'll never get to date a boy, and please don't make a joke about how much trouble and angst THAT fact has saved us. She never got to go to the ballet, and oh, I know she would have loved it. If I'd known how quickly things were going to change, I would have followed through on getting Nutcracker tickets.

But even with all that, I also think I am crying right now for me and not for her. Vivienne was a happy baby, but she was almost always sick and battling the hardest fight a baby could wage. So, while she'll never make it to her senior prom, I also know she won't ever hurt again. And she'll always know she is loved.

You Will Need a Lot of Strength Here

I hope, if you are able to, that you visit the Wall of Angels.

It exists as a tribute to the babies and children parents have lost over many years, and I will warn you that you won't be able to read for more than a minute without crying. It is both very positive, to see these babies remembered and (as a parent) to have a safe place to talk about grief (in a time when others are moving on with their own lives). But it is also heartbreakingly sad.

If you've suffered loss, accept my love and support. If you haven't, please realize how lucky you are, because there is nothing more awful. Hug your babies and children a little tighter (this means you, too, Mom and Dad).