Viva La Vivi

Susan G. Komen Cures Lawyers' Income Woes?

2011-01-04T09:30:00.003-05:00

I am almost speechless following news that the Susan G. Komen Foundation uses donated funds to sue not the companies that spew chemicals into our water, not the pesticide and agricultural firms genetically mutating our foods, not the BigPharma monsters doling out dangerous drugs, but instead small charities which Komen perceives to invade its alleged rights to the phrase "For the Cure".

How much money is diverted from research to bickering over trademarks? From the article linked above:

"Blum told HuffPost that legal fees comprise a "very small part" of Komen's budget, but according to Komen's financial statements, such costs add up to almost a million dollars a year in donor funds."

Medical sociologist Gail Sulik published very insightful commentary about the financial stakes for the Komen foundation.

In analyzing the "purchase with purpose" campaign - in which everything from golf balls to cream cheese is painted pink in an orgy of slacktivism - Sulik acknowledges that some believe the efforts provide little or no substantial progress toward a cure. In my opinion, this marketing of charity through buying pink is the lowest level of support and surely does more good for corporate profit margins than anything else.

That said, I will be sure to avoid any Komen-branded product in an effort to diminish the funds available to them to attack small charities working for the same goal - such as Mush for a Cure, which raises breast cancer donations - and other charities working for other cancer or various disease cures.

Komen-supporter and past race-starter Stephen Colbert comments (video here) has added his voice to those chastising the Foundation. Komen certainly has some explaining to do, and I hope a change of policy follows soon after. Because personally, I know that the million dollars put in lawyers' pockets yearly by the Komen Foundation is money desperately needed in the pediatric brain cancer world. Please donate to smaller, more efficient charities who will use those funds more wisely.

Thanksgiving Need

2010-11-12T20:57:00.004-05:00

It seems like a lifetime ago that Vivienne was with us, fighting tough as nails style through chemo, transfusions and everything else. Not every family has to face that kind of challenge, but there are so many simple needs as well.

Here at home, our Bucks County Housing Group organization's Community Food Pantries expects requests for Thanksgiving food assistance that significantly exceed the donations and supplies available for the families' needs. Families are already being warned that they may not receive assistance because all requests cannot be fulfilled. The economy is challenging every family in unique and troubling ways this year, however those whose basic nutrition needs aren't being met, or who have to choose between heat or gas and food, are specifically vulnerable.

Personally, I reached out to a good friend who I know to be a decade-or-more volunteer with the organization in order to ask her thoughts on whether I could donate a couple or turkeys or other supplies for Thanksgiving needs. When she conveyed the increase in demand this year, and explained that families were already being warned that all needs may not be fulfilled, I felt strongly that more needed to be done.

I realize not everyone can give right now, but to those who can I would sincerely request that you consider a donation to assist these families, or families in your own town. Here are some ways to help:

1. Here in Bucks County, BCHG says Giant or Acme gift cards in various denominations are most helpful. I would love to hear from folks who are willing to drop off a $25 grocery gift card. I will truly honor my daughter, my love for her, and the thanks I shared during her time with me, if I could inspire assistance.

2. Of course, any food donations may be made directly as well. The BCHG website shares a list of food, household and cleaning items most needed, here.

3. Yet another option (see how convenient and simple it would be to help?), is to make a direct donation of funds in any amount directly to BCHG. Instructions as to how to do so, online or by mail, are here.

4. If you'd like to consider how you can help families in your own town, Feeding America and other charities can assist you in connecting to a local organization. And if you would like help finding the right group, let me know and I will help!

My goal is to convince 10 people (myself included!) to donate $25 in cash or Giant or Acme gift cards to the Community Food Pantries, to help families in need this Christmas. I won't nag, or pester, or guilt trip anyone, but I will implore you to consider helping. On a light note, I will promise that your turkey will taste twice as good if you provided one for a family in need, too.

Thanksgiving Need

2010-11-12T20:57:00.003-05:00

Here at home, our Bucks County Housing Group organization's Community Food Pantries expects requests for Thanksgiving food assistance that significantly exceed the donations and supplies available for the families' needs. Families are already being turned away based on volunteers' estimation that all requests cannot be fulfilled. The economy is challenging every family in unique and troubling ways this year, however those whose basic nutrition needs aren't being met, or who have to choose between heat or gas and food, are specifically vulnerable.

2. Of course, any food donations may be made directly as well. The BCHG website shares a list of food, household and cleaning items most needed, here.

An Ally Against Pediatric Cancer

2010-05-08T19:36:00.006-04:00

Today was an exciting day in the Bunnyverse.

After traveling all over Bucks County and New Jersey in search of Airsoft gear, we returned drained but happy to town this evening with a last minute trip to the grocery store in mind. I am going to make a Banana Cream Cheesecake for Mothers' Day tomorrow. As we drove south on Main Street, I saw a commotion. I saw a lot of signs resembling the one above, a logo I know very very well.

Congressman Joe Sestak is running for Senate, and it is my strong hope he ousts Arlen Specter (who throughout his career can't seem to decide whether he is a Republican or a Dem, having changed sides more than once when doing so suited his career goals). Specter seems more interested in serving Specter, than in serving America.

Congressman Sestak, on the other hand, is a Veteran (a retired two-star Rear Admiral, no less). He's got a good record on the environment, education, healthcare, reproductive rights, marriage rights, and other issues that are really important to me. He knows national security: He was selected to serve as the first Director of the Navy's anti-terrorism unit after September 11. And he works hard: he was named by House Majority Leader Steny Hoyer as the most productive freshman member of Congress in 2007. But the issue that motivates me most, and on which I am proudest to speak out today (the day before Mother's Day) is pediatric cancer. Joe Sestak is the proud father of a daughter who survived brain cancer, and he is a sponsor of the Pediatric Cancer Caucus. This is the issue that introduced me to him.

So when I saw the commotion today while driving through town, I screamed "PULL OVER!" at my husband. He was confused, but I have to admit he's used to my wild mood changes and sudden changes of direction. Seeing the signs, I hoped there would be someone from Congressman Sestak's campaign that I could speak to, to introduce myself and convey my support. I hoped to get a button, and a bumper sticker, and leave my email address.

Beyond my wildest hope, Congressman Sestak himself came over to talk to me for a few minutes. He listened while I told Vivienne's story, and he shared a little of his daughter's story. With tears in my eyes, I told him how much his support of pediatric cancer research means to me. On behalf of myself, and the Children's Brain Tumor Research Foundation, I thanked him from the bottom of my heart. His compassion was so evident, as was his patience in taking the time to listen to me. I was elated to meet the Congressman, who I follow on Facebook and whose campaign I've watched with interest.

The Pennsylvania primary is May 18, and the polls seem very close. With that in mind, and in speaking for the daughter who SHOULD be here with me on Mother's Day tomorrow, I want to encourage anyone in Pennsylvania who reads this to get out and vote for Congressman Sestak. Because children need an advocate, and he hasn't just promised to be one - he IS one.

A Little Girl's Diary

2010-04-08T19:14:00.003-04:00

A Little Girl's Diary is the (painfully true) story of a little girl who died of Cystic Fibrosis in Texas, very, very many years ago. It is a sad reminder that sometimes we only have words to keep a baby alive, and loved, in our hearts. In this case, we have that little girl's own words, although very few of them. But I live by words of remembrance every single day, and I want to honor it.

Bad Advice, or Is This It?

2010-01-20T22:53:00.002-05:00

Through a circuitous path from a Gawker media website to an advice column through another link, I found an absolutely ridiculous website called "The Checkout Line". It's content (which doesn't really improve beyond the insensitive title), seems to focus exclusively to giving advice to the healthy and unphased folks frustrated by other people's bad luck.

Yes, really.

Reading through the first page or so of questions, I see one theme over and over again. The family member of a cancer survivor, or perhaps the friend of a hospice nurse, complains about having to adjust their (otherwise uncomplicated) lives around the grief or stress experienced by the patient. A sister complains that her sibling, a cancer survivor, talks about her experience too much and gets too much attention. A sibling complains that they don't want to be nice to their jerk brother just because he has a brain tumor. And over and over, Judy the Journalist (not Judy the Psychologist, or Judy the Cancer Survivor, or Judy Whose Only Child Died) tells the complainer: Yeah, you are right. Tell your grief-riddled cousin to shut up (or whatever).

The extent to which this annoys me is precisely because talking about grief is important. Those who have suffered it, through their own illness or the loss of a family member, need to talk about it to heal. If we can't turn to our friends and family, what good are they? Sure, relationships are a two way street and everyone needs to give and receive love, but it is inappropriate and vain to reiterate that those touched by cancer are selfish brats for talking about themselves so damn much. The world needs fewer advice columnists, and fewer people encouraging the kind of selfishness that this woman seems to applaud.

I hope that in my grief (sorry to mention it so often), I have missed the joke in the website. Maybe it's a doomed-to-fail humorous book pitch, or something. If that's the case, please let me know.

Rhabdoid Cancer Benefit: Matty’s Rhabdoid Tumor Research Foundation

2010-01-06T09:25:00.003-05:00

On January 23, 2009, The Knights of Columbus Union (NJ) Council will present local band Voice of Reason (music at link) in a $20 open-bar benefit show. The show will benefit cerebral palsy and Matty's Rhabdoid Tumor Research Foundation. Like Vivi, Matthew Wyrozemski battled with rhabdoid tumors and went to heaven before reaching 10 months old.

To purchase tickets contact: Harry Lupo at 908-577-6609 or hjl44@aol.com, Rob Salvatore, GK at 732-522-0240 or Salv12@comcast.net.

My Local Sports Team is Better Than Yours

2009-12-24T09:05:00.005-05:00

My local sports team (the Philadelphia Eagles) is surely better than your local sports team, but it has nothing to do with rankings, divisions or playoffs.

Although my loyalty to the Eagles was challenged this year as a result of the decision to bring convicted dog-abuser Michael Vick onto the team, they have more-than redeemed themselves in my eyes. Together, the Philadelphia Eagles and Teva Pharmaceuticals donated $11,000 to the Kevin J. Snyder Memorial Foundation. Kevin Snyder, who lived in Philadelphia, died of Atypical Teratoid Rhabdoid Tumors in 1995, at age 9. His family has created the foundation in his name, which donates to AT/RT research, maintains a scholarship fund in Kevin's honor and this year plans to help local families at Christmas.

I am not the only one in the Martin family who will be pleased with this news. The Queenling herself never forgot the green on game days, and her Swoop still sits on my desk presiding over my work.

Eagles PJs a beloved gift from

the Rowse family.

Watching the game at St. Jude with Granddad;

sleepy snuggles consoled for the

disappointing defeat.

St. Jude CRH Researcher Honored

2009-12-23T10:19:00.002-05:00

A St. Jude Children's Research Hospital doctor, Charles Sherr M.D., Ph.D. who is c0-chair of Genetics and Tumor Cell Biology, has been named a 2009 Fellow in the American Association for the Advancement of Science.

The work for which Dr. Sherr is being honored includes research into tumor suppressor genes and their function. I cannot even aspire to a comprehensive understanding of the science involved, but I see numerous scientific research papers dedicated to Atypical Teratoid Rhabdoid Tumors citing Dr. Sherr's work regarding cyclin D1 (an important DNA-driven component in AT/RT).

With one family's voice (hopefully echoed by others), I would like to thank Dr. Sherr, St. Jude Childrens Research Hospital, and all of the other scientists, doctor, researchers, study volunteers and others who have participated in the fight against Rhabdoid tumors.

On Old Friend, Reintroduced

2009-12-10T09:15:00.002-05:00

If you read the archives of Viva la Vivi, you will hear a resource mentioned over and over (and over and over). When Vivienne was diagnosed, information online about AT/RT was scant, consisting primarily of individual websites, the Rhabdoid Kids website and a Wikipedia article. Your Cancer Family Forums served as a clearinghouse for parent communication and mutual support, as well as for the precious, desperately wanted information. For example, founder Jeff Shaddix organized a conference call with geneticist Dr. Jaclyn Biegel. I still have the notes I took during that call. Of all places, they are in my sketchbook, in between colorful paintings by a St. Jude kid-friend, and my fish and birds.

Your Cancer Family Forums has re-organized and re-energized, under the banner Children's Brain Tumor Research Foundation. I cannot possibly overstate the case when I tell you how incredible a resource it is. Future families looking for understanding will find a FAQ on Rhabdoid Tumors (by the ever-supportive Dr. Biegel). Also available are message boards, in which I participate, discussing emerging treatments, tumor registries (which are very helpful for researchers), a reference to current clinical trials, and family-support ideas.

In addition, CBTRF is a 501(c)(3) tax-exempt non-profit. Because of the help they have done for our family, for Vivi, and for our future children, together with the help they hope to do with research and action to neutralize the AT/RT monster in the future, I sincerely request you consider them in your charitable giving plans, in honor of Vivi and Aiden and Jonathan and Diesel and Evalyn and all of the other babies and children we know and love.

I Did It, But....

2009-11-24T12:23:00.002-05:00

I gave blood yesterday (and my Dad came to donate too!).

It was a really emotional process for me, and in retrospect I think I should have expected and prepared for that more. I was crying from almost the moment I walked in and wrote down my name. I held it together through the initial interview process, where they ask you some basic questions to determine you are healthy enough to give blood and evaluate your risks for blood born or prion diseases.

Then they did a finger stick to get a little bit of blood to check my iron levels. I held back the floodgates at that point, but it was the beginning of the end of my self control. While at the blood drive, all I could think about was Vivienne and the medical procedures she had to undergo in her short life. That finger prick HURT (not as badly as what was to come), and she had so many heel pricks and blood tests and nurses trying to find her teeny, tiny veins. I am an adult, who went into this procedure voluntarily and with understanding. And sometimes I wonder how I could have been so cold as to put my daughter through it.

Then it got worse. They brought me over to wear the donation would take place, and I laid down. My emotions were stretching tighter and tighter; never a good way to go into something like a blood draw. I had expecting nothing much worse than I feel when I get a simple blood draw for lab work, but it hurt so bad I started crying when they put the needle in my arm. They had to take it out, until I could hold still - I was shaking with tears. It felt like everyone was staring at me, and all I could think about was everything that Vivienne had to go through.

I guess she came to me and gave me some of her bravery, because I pulled myself together and they were able to try again. The nice nurse listened to me talk about Vivi, and why I was donating blood. We talked about the fact that my high emotions were probably exaggerating the pain. Vivi never had fear, and she always had a loving Mommy and Daddy to cuddle away the pain when these things happened. But, thank God for medical science and the ability for her to have had a Hickman access, so that the needle pricks were able to stop.

So, the whole process hurt many orders of magnitude more than I anticipate it would, but I think a lot of that was emotional pain. I'm going to make an appointment to donate platelets in the next few weeks, and will definitely donate blood again. I am willing to take on all the physical pain in the world, because the kids I am doing it for - Vivi and other kids who have fought or are fighting against cancer - are so much braver.

I was glad when my Daddy showed up - I was able to come back to the positive reasons that I really wanted to do this, and put some of the hurt (physical and emotional) behind me.

Please Give Blood

2009-11-20T09:08:00.002-05:00

In honor of Vivienne and as an action of thanks for those who donated blood and platelets that she needed so that we could pursue her treatment, I just made an appointment to give blood on November 23, 2009.

Without the many, many, many transfusions of blood and platelets Vivienne received, she would not have been able to have her chemotherapy treatment or surgeries. Without that treatment, she would not have had her one and only Thanksgiving. In hopes that I can, even in some small way, give another family a Thanksgiving or Christmas with a loved one, I am going to donate blood. This is especially important since I have O- blood, which is at a less-than-one-day supply right now.

I hope to donate as frequently as I am allowed between now and Christmas. The holidays make me feel like my heart and soul are just bleeding out, and so I hope to put that to good use by letting that happen, physically, to help others. It would mean a lot to me if the honor of Vivi and thanks for the transfusions she received (not to mention the 7 units of rare blood I received on the day of her birth, which saved my life), inspired friends and family to make appointments to donate. So please consider it, if you can.

New Study at St. Jude

2009-11-10T11:35:00.002-05:00

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

2009-09-25T23:17:00.002-04:00

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

2009-09-25T19:49:00.003-04:00

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

2009-09-22T09:32:00.001-04:00

I believe the technical problems with commenting have been resolved. Please do not hesitate to email me if there are any problems!

Hate Mail

2009-09-21T15:19:00.002-04:00

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

2009-09-15T12:36:00.004-04:00

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

2009-09-02T17:11:00.000-04:00

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

2009-08-31T09:30:00.003-04:00

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

2009-08-25T19:32:00.001-04:00

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

2009-08-22T13:36:00.003-04:00

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

2009-08-11T01:26:00.002-04:00

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

2009-08-10T10:08:00.002-04:00

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

2009-08-04T11:45:00.002-04:00

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

2009-07-29T21:42:00.002-04:00

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

2009-07-23T18:12:00.002-04:00

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).

2009-07-23T15:16:00.002-04:00

Who could look this calm, cool, collected, relaxed and happy? We were in isolation for C. diff. when this picture was taken. Justin and I were so frustrated, living in a hotel room for over a week, but Vivi - she didn't care. She got to sleep in the bed with Mommy, and there was lots of playing. And that octopus to battle with...

Can't stop looking at pictures today, thinking about her, noticing the ways in which she's changed my entire outlook on life. The entire definition of the words "love," "bravery," and "joy".

Unfortunately, now, without her, I also understand the definition of the word "misery". But I am going to keep trying to tough it out, for her.

This is My World, Now

2009-07-23T13:30:00.007-04:00

I am crying so hard, I can barely see to post this. As I said on Facebook earlier today, I almost wish it was possible to die of sadness, because if it were, She and I would be together right now.

A Dream

2009-07-22T08:30:00.002-04:00

Vivi came to me in a dream last night, chattering away. She was her size, not grown bigger, but we were in St. Jude and she was talking up a storm.

Some of it was more or less nonsense, wherein I believed she was talking and no one else did, so we did some tests. We showed her a drawing and asked what it was - she said "Purple heart!" This morning, I am finding that very interesting since over the weekend I had been thinking about gathering SOME (by no means all) of her clothes and toys for donation to Purple Heart.

I got to tell her I loved her a lot, and get kisses. She smiled so big for me, in the dream. I got to hold her again, and hug her and play with her and touch those WONDERFUL FEET! It was very hard, in the dream, to share my baby angel. Justin, and my Mom and Pop were there, and we all got to hug her and play with her and talk to her and give her love.

As much as it was really, really miserable to wake up and realize it was a dream, I won't say it was "just" a dream. I feel full to the brim of love for her today, in a wonderful and excited way rather than a sad way. And I think that is all in the world Vivi would have wanted, since when times were tough, she never let go of joy. If you want proof of that, read this post about her recovery in the ICU after a procedure requiring general anesthesia.

One of the greatest things for me about having this blog, is stumbling upon posts like that one, which helps me push the sadness and doubt away for at least a few hours and remember what a strong, remarkable, playful, happy baby Viv was, every single day. It was truly a privilege to be her mother.

Help a Friend of Vivi

2009-07-14T15:24:00.003-04:00

Please take just a moment of your time to show your support for the family of Vivi's friend Aiden, who fought his battle against AT/RT with Vivi at St. Jude and has joined her as an angel heaven.

His family has created a dedication for him at LIVESTRONG, Lance Armstrong's group. Right now, Lance Armstrong is dedicating his ride in the Tour de France to the fight against cancer, and after the race he will send the dedication book to world leaders to encourage and prioritize cancer research.

If you take a minute and add your name to Aiden's dedication page, that will make the message all the stronger. Vivi, Aiden and all of the other babies who are fighting or have fought their battle against AT/RT and other cancers NEED for us to be their voices. So, please do this in loving memory and honor of Vivi and Aiden.

To add your name, follow this link: LIVESTRONG. Thank you!

Supporting Brain Tumor Research

2009-07-10T18:16:00.005-04:00

After all this time, a local charitable organization supporting brain cancer research has just come to my attention!

The JAG fund (website link), located here in Doylestown, is as follows:

Established in 1989 in memory of Joel A. Gingras, Jr., the mission of The JAG Fund is to raise funds and increase awareness for brain tumor research. Since 1989, the organization has donated more than $925,000 to the American Brain Tumor Association (ABTA) through the untiring efforts of generous individual and corporate sponsors. In recognition of The JAG Fund's hard work, the ABTA established the Joel A. Gingras Jr. Research Fellowship in 1995.

Upcoming this summer are several fun and family-friendly events, designed for good times and research into treatment and cure of brain tumors. On July 31, the JAG fund will host a golf tournament at Pinecrest in Chalfont, PA, and in August, the fund will host a Delaware River tube float. Please visit the JAG fund's website directly linked above, for further information. The Martin family will be very proud and very happy to participate or attend events, and we encourage our friends and family to do so as well!

The Song I Detest Most in the World

2009-07-09T10:00:00.002-04:00

This song was on the radio constantly earlier this summer - I don't know if it is anymore, because I literally had to stop listening to the radio because of it. It would sneak up on me and just make me collapse. Now I'm further haunted by it - people drive by my house and I can hear it from their car stereos.

Like some people instantly faint or vomit at the sight of blood, I instantly cry as soon as I hear a second of this song.

So why am I posting it? Well, primarily so that I always remember how it made me feel, what this summer sounded like and felt like. My love for Vivi hurts so much, my aching for her. I look at her pictures and cry, three or four times a day right now. And I want to remember that, because it is how I learned what's really important (love, family, smiles, the baby) and what's not.

Announcement

2009-07-07T18:46:00.002-04:00

With the beginning of our journey to have another child via surrogacy, Justin and I have added a second website.

A Big Sister in Heaven will be the online home of Vivi's future baby brother or sister, who will come into the world via a miracle of kindness and generosity in conjunction with a compassionate surrogate mother. Over at the Big Sister blog, we will talk about the challenges of overcoming infertility, the financial challenges associated with expanding our family, share the resources we develop for surrogacy and - most importantly - share the baby's story.

We will continue to update Viva la Vivi, and the Queenling's online home stays very close to our heart. Day to day updates on the Martin family will happen most often at the Big Sister blog, so please add it to your subscriptions and/or bookmarks!

Possibly the Best Place on Earth

2009-07-06T23:18:00.005-04:00

I have St. Jude on my mind today; it's getting near the anniversary of that beautiful August day when the folks in the Neuroscience department at LeBonheur and E-clinic at St. Jude together gave Vivi the shot at survival that allowed many miracles for the Martin family.

Without them, we wouldn't have had Thanksgiving or Christmas with Vivienne. This moment, would never have been:

And this elfin smile, one I look at almost every day to remember what being happy actually felt like, would never have been:

I miss St. Jude - Memphis was Vivi's place, where she thrived, where she saw pandas and did lots of kicking and flirted with docs and nurses. In Memphis, Vivienne took her role as Queen Bee to the next level. In Memphis, we had a daughter to hold, and love and care for, and the help of the most supportive doctors and nurses, and other families dealing with their own tragedies.

I don't know if I want to move back to Memphis, but I would do anything for one more day with Vivi, even if it did start with a 7:00am C.S.T Assessment Triage appointment. Even if the Medicine Room is running hours late.

And to those in Memphis who still check in with us here at Viva la Vivi from time to time - y'all are my heroes. We will never forget what each of you has done for us. You gave us the most precious gift, of time with Vivienne, and we are eternally thankful for it.

Growing our Family

2009-07-05T13:37:00.004-04:00

Justin and I are beginning the process of growing our family through surrogacy. In starting our search for a surrogate agency, we are looking at the experiences of others who have done so, and tips for financing this incredibly expensive process. Sadly, because of my hysterectomy, it will cost us well more than $50,000.00 to have another child.

On top of the sadness we have suffered, this is mind-boggling, but necessary for us to maintain the forward momentum and love in our lives that began with Vivienne. We have discussed over months, cried, shared our feelings, and wavered between surrogacy and adoption. We know that our purpose in life is as parents, and we know we must honor Vivi by allowing her to be a big sister, even from Heaven.

With our decision finally made, we are beginning our search, and soliciting resources to better understand and manage our challenges.

Memories

2009-07-04T11:10:00.003-04:00

This is a difficult time, to say the least.

Since April, every day that passes has some beautiful or sad connotation. It is the anniversary of some event in Vivienne's short life - a year ago today, for example, she was discharged from Childrens Hospital of Philadelphia after her first surgery (the VP shunt placement) and diagnosis with cancer.

At that time, I remember thinking how special my Queenling is - there were fireworks on the night before we were discharged from the maternity ward at Doylestown Hospital, and fireworks on the day we were allowed home from CHOP. I thought to myself "She will get spoiled, thinking everything is about her - though of course it IS, so no complaints." And besides, all who knew the Little Bunny are well aware that her personality would never get spoiled, selfish - she was too good, too happy, liked people too much. Too ready and willing to smile for something as simple as being tickled, to ever become jaded.

Recently, we also passed my Dad's birthday, which was the day before the fateful pediatrician appointment where far worse than the anticipated routine immunizations awaited. Every time I hear a parent balk at the terror of immunizations, I wish they realized how lucky they were that their child could have them, needed them, and so forth. But that is a story/campaign for another day!

But the better memory of course, is Dad's birthday last year. With his permission, I am including the email I sent him this year with birthday wishes:

Dear Dad:

I can't believe it's the Longest Day of the Year again already....

With joy rather than sadness I will always remember that June 24 last year, we made sure Vivi visited her Granddad and spent some time. And I will remember the HUGE grin on your face when we walked in with her, and your sitting in the kitchen holding her and playing with her. Both of you were really happy. So, I will never have a birthday gift or cheer as good as that one - there will be other babies someday, but that day with Viv will take the cake as your BEST BIRTHDAY EVER, I know. The other babies will just have to understand that (and they will).

But with her love for you in my heart too, here is a big happy birthday from Vivi and me (and Justin, too, of course):

HAPPY BIRTHDAY!
(In case it doesn't come through that way, the above is actually written 7 times larger than everything else!)

I love you, Dad. I wouldn't have made it this far without you.

Love,
Mary

We never thought, last year, we never even considered it a possibility in a million years, that Vivi would not be with us on Dad's birthday this year, or to celebrate July 4th. She NEVER got to see a Sparkler in action, which is a shame because she would have LOVED it, my littlest magpie.

I know that I will never, in a million years, recover or heal from the loss of Miss Vivi. Things will, in time, get better and more manageable - or at least that's what everyone promises. But my life will never, no matter what, be as good as it was in April, May and June 2008. When I look at her pictures, especially this one, and I see those serious, deliberating, communicating grey-blue eyes (her Daddy's eyes, and eyelashes), my heart breaks. And every day when I wake up, and think about where I was or what I was doing this time last year, I know that the best is behind me.

But, for her (because she never wavered), I keep going, try to find something to be happy about, and cling to Justin. I am lucky to have him for a husband - no better man exists. I don't know where I would be if not for him in my life, but I know it would be worse. I know that he and I, together, gave that Angelbaby the best of everything, the most love, complete adoration, and will always praise her to Heaven and back.

Ride for Rett

2009-06-14T16:18:00.003-04:00

My Dad, and my sister Molly, my nephew James Scott, my friend Carly, her son Elliott and I went to Ride for Rett today and HAD A GREAT TIME.

It was really phenomenal to see Hannah riding, that just made our day. And James Scott's exuberance for a pony ride made me realize that here is a young man after my own heart. Even Elliott got in on the fun, grinning happily sitting on a pony after seeing James Scott's example. We bought some raffle tickets, enjoyed the moon bounce and saw all my friends at Heaven's Gate.

It was a GREAT DAY, and I am so happy that Dad encouraged all of us to be together.

My Best Girl

2009-06-09T11:15:00.003-04:00

Just look at those tiny toes!! And this is just TYPICAL Vivienne - as happy and content as could be, to be flirted with and given attention to, chatting back to her Greatpop.

What a wonderful, magical, angelic baby. If I close my eyes, I can smell those toes, I can feel them kicking, or gripping. I can see those feet going a million miles an hour with joy.

Great Family Event

2009-06-09T11:07:00.002-04:00

This one for our friends and family local to Pennsylvania: there is a GREAT family event taking place on Saturday June 14. Ride for Rett day (flyer here) will include a horse show, pony rides, family fun, a Harley bike ride, drill teams and a lot of other family-friendly fun events, all to benefit two local girls battling Rett Syndrome and the International Rett Syndrome Foundation.

This event is hosted annually by Heaven's Gate Farm, the wonderful folks who have supported the Martin family tirelessly and made our dreams of Vivi's pony ride come true. I can't think of a better way to say thank you to the Flynn family than to support granddaughter Hannah and help research to cure Rett Syndrome.

Please consider attending (and email me to make plans to meet up if you are coming) or sending a donation by visiting the donation link, here.

A Neat Way to Support Cancer Research

2009-06-04T11:04:00.005-04:00

Every once in awhile, my obsession with Facebook gives back in some way. I am "friends" with St. Jude, and often families who support St. Jude or have been touched by the wonderful institution make a comment that I appreciate.

Today, someone linked a website selling really neat Fretwire Bracelets (great gift for a music-lover), which, per the website, are made from genuine nickel/silver guitar fret wire, used on a guitar’s finger board. There are a few available, but this is one of them:

At any rate, the maker will donate $1.50 from each sale to one of four cancer charities - including St. Jude Children's Research Hospital - and you can select the one you want!

Please consider purchasing one (for me perhaps? My birthday is fast approaching!) and sending a donation to St. Jude or any other cancer charity. They are available for purchase at the link I posted above, or by clicking here. For more information about the fundraising, visit this link.

Race for Life: Cancer Support Internationally

2009-05-27T14:38:00.002-04:00

Please consider sponsoring our friend Gabriel's team in the Race for Life to benefit Cancer Research UK, which has the following mission:

Cancer Research UK is the world's leading independent organisation dedicated to cancer research. We support research into all aspects of cancer through the work of more than 4,250 scientists, doctors and nurses. Over the past 10 years alone, thousands of lives have been saved through earlier detection and improved treatments. But, much work remains to be done if we are to achieve our aim of beating cancer.
Charity Registration No 1089464

Remember, AT/RT is a rare disease and we are one world community in fighting it and other forms of cancer!

Signs from Vivi

2009-05-27T10:44:00.006-04:00

This beautiful daisy was planted in honor of Vivi by Dane and Miles Dodge.
Thank you, Dodge family!

I received a post on the Guestbook that really gave me shivers, in the most wonderfully positive way, and wanted to share it here as a post, because it links with some other thoughts I've had percolating. The Guestbook post gave me some encouragement to post again and put those thoughts to Viva la Vivi.

Gabriel's Daddy wrote as follows:

Dear Mary & Justin,

Thank you for your comments about Gabe's bravery award. Hopefully every little bit we can do to raise awareness of ATRT will benefit others in time.

You may have seen that we recently took a little vacation to give Gabe a much needed break and fun time. We were on the South Coast of England, staying in a caravan and for the first few days the weather was dreadful with lots of wind and rain. Despite this, it didn't dampen our spirits and it was the first time in ages that I can say we were happy again.

One afternoon, I was sitting inside the caravan (trailer) watching the kids play and listening to the rain whilst Christine made lunch and again I found myself thinking of Vivi, but this time I didn't feel sad. Usually when I think of her, I think of you and Justin and your loss, but I was thinking of her and her lovely little pictures on this blog. Her smile and that wonderful video clip. It made me smile.

That afternoon, the weather began to turn for the better. The rain stopped, the winds settled and the sky brightened up. The next morning, I went out to prepare our bikes for one of our rides out and was quite taken back when I noticed the DAISIES! They were not there the day before, I'm convinced of it! I'd stood there plenty of times before that morning.

For the rest of the week, the weather was lovely, bright and warm. I took photos of the daisies and will have to find a way of getting them to you. I was thinking of Vivi and to me it's apparent that she was thinking of Gabriel too.

With love always,
Gabriel's Daddy.

What touched me so much about that story, was the idea of my Vivienne watching over not just her parents and her family, but also friends she never had the opportunity to meet in her short life, but who her Mommy cares deeply for. The idea that my little angel in Heaven is a part of the stories of life, love and joy for other families, especially those facing many of the same fears, struggles and problems that my own family faced.

Soon after Vivi's death, I read a comment to someone dealing with the death of a parent by an individual who felt that the idea of "so and so lives on in our thoughts and love" was a thin idea that stemmed from needing something say and give little solace. Obviously, I disagree. Vivi's illness and death is a tragedy, no doubt about it, that no words can soothe. But for such a tiny baby to take that short time on earth and live on by sharing and inspiring joy is more meaningful to me than it sounds at first blush. I believe, I truly do, that those daisies were not there the day before, and that just makes my soul soar.

Vivi is not just living on in our memories and thoughts, she is having a tangible, day-to-day impact on ours and others lives. I know I keep saying it, but that tiny baby who lived only for 10 months (the best 10 months of my life), has had an impact on the world that outshines anything I've ever managed to do in almost 29 years. And I believe that impact is lasting, and I am honored to have had this story shared with me.

A Child (and Family) of Courage

2009-05-18T10:11:00.002-04:00

I am incredibly proud to announce that our friend Gabriel won the Child of Courage award!! Gabriel and his family are incredible, I feel so close to them, and view Gabriel's success against AT/RT as proudly as if he were family.

Selfishly, I am also thrilled to see publicity and news about AT/RT. It is so rare and so underfunded, that I view Gabriel as a shining star who will bring this awful disease to the attention of so many more people.

Congratulations Gabriel!!

A New Addition

2009-05-14T09:49:00.003-04:00

I am proud to introduce the newest member of the Martin family, Lt. Colonel Pete Mitchell (callsign Maverick, obviously).

Maverick is a Beagle mix, allegedly mixed with an American Eskimo Dog, but I just don't see it. He was adopted yesterday from the Bucks County SPCA. He is VERY sweet and incredibly well-behaved, knowing all kinds of commands like sit, come and leave it. He's shy, but very affectionate.

2009-05-05T13:34:00.000-04:00

I don't think I will EVER be that happy again.

Hard Day

2009-05-05T13:28:00.002-04:00

I'm having an incredibly hard day with things, right now.

I miss Vivienne. She should be ONE now. She should have a pony. She should be walking, and babbling and smiling and laughing and watching WonderPets and playing with her Daddy. I should be able to hold that perfect, super-human, wunderkind, my Queenling, in my arms. Why is that too much to ask?

Usually I'm pretty good with trucking along and focusing on what needs to be done. Staying positive, acting it even when I don't feel it, has become my mantra. Maybe I'm worn down from being so sick the past week and a half, but all I've been able to think that whole time is how humiliating it is that a simple cold can knock me down when CANCER never knocked Vivi back a single step. She should be here, not me. Preferably, she should be here and never be sick a day in her life because she's JUST. THAT. GOOD.

I love her. I want her smiles, and her laughter and I want to feel her snuggling and wiggling and her heart beat and her cute, yummy, baby breath. Now.

Special Prayers Needed

2009-05-05T13:08:00.002-04:00

Our very special friend Jonathan Shaddix is quite seriously ill, after a return with new growth of AT/RT in his brain and spine.

Jonathan and his family have been special inspirations to the Martin family, as they are some of the most-informed and strongest-fighting individuals I have ever had the blessing to know. Please keep them in your thoughts and prayers, as they are constantly in mine.

We love you, Shaddix family.

A Special Day

2009-04-24T11:29:00.001-04:00

Today will be a very special day.

We hope to visit Heaven's Gate Farm, to remember the good times that Vivienne and Caitlin had there, and to appreciate the love and support that the HGF family has been for us. Without everyone at HGF, and their compassion, I don't know that we could have made it this far.

We plan to go to the Zoo, at least for a short trip, and visit Vivi's favorite animals (although sadly, there are no pandas, we know Vivienne would not have minded).

We will spend some time with good friends tonight.

I have been overwhelmed with happiness and appreciation for the loving, supportive, caring and kind emails, phone calls and messages we have been receiving.

Thank you, to everyone who has sent their love, who has donated to St. Jude or LeBonheur, and who has supported us through this time. Vivi would be so proud.

Birthday Wishes, to an Angel

2009-04-24T11:01:00.003-04:00

My dearest Vivienne, little angel:

I love you, and I will always love you. Your coming into my world brought sunshine and joy for the first time, and the vivacity and intensity with which you lived - and lived well - has changed me forever.

My Vivienne, you taught me so much. You taught me to trust the people who care most (especially your Daddy, our knight in fairly dirty, patchouli and nicotine-stained leather armor). You taught me that a smile is a perfectly reasonable way to neutralize a bad situation. You taught me that a well-timed hug can solve almost any problem. You taught me to kick up my feet and laugh at the silliest things, even when the world seems a little dark. Above all, you taught me love, not just to say it or write it, but to feel it with every cell of my body, and show it with every action.

I am blessed to have known you. Instantly, from the moment you entered my world and I held you in my arms, I believed you were to0 good for me, and for the world. You had a mission, though, to make us all better - more patient, kind, loving and joyful. And I can tell you without reservation, dearest Vivi, that your mission was a success and therefore God called His small, perfect angel back to Him.

You may not be where I want you to be, here in my arms, on the way to Heaven's Gate Farm to see your new very own pony, but you are here in my heart at all times. No mother, nor any father, could love and adore their beloved daughter more. My soul knows that every breeze, and sunbeam, and raindrop, and spring flower, is an expression of your love for us (and ours for you).

Please, dearest beloved Vivi, protect your cousin Brodie, share with him your strength to manage adversity, and help his parents Joe and Sara to stay strong, always faithful and always protected.

Happy Birthday, my most dear.

Love,

Mamabunny

A Daisy from Aiden's Family

2009-04-24T10:27:00.002-04:00

Aiden's Mother and Grandmother sent us this beautiful, ethereal daisy a couple of weeks ago, and warmed our hearts beyond measure.

Helping a Friend

2009-04-24T10:14:00.003-04:00

I have so much to post today, about Caitlin and Vivienne. But first, I want to ask for a birthday present for Vivienne, that I'm sure she would endorse (with her love of New York City, her true home!).

On the Carepages website for our AT/RT friend Jonathan, his father writes:

On a more personal note, since we have such a large and terrific community of friends and families here on Carepages, I'd like to ask for your help on something. One of Katie's friends enrolled her in a Mothers' Day competition run by Victoria's Secret. The winner gets an all-expense paid trip to New York for shopping and spa-works. If anybody deserves this, it is Katie! She has, at the time of this writing, already made it up to 3rd place in the voting (in only 2 days!), and I'd like to ask for your help to get her to the top and keep her there!

To vote for Katie, simply follow the link below and click the button on the site to vote for her. Feel free to pass this on to your friends and family, or post it on other websites where she may get additional support. I believe this is a great way to show her our support!

PLEASE NOTE THAT THIS LINK POINTS TO THE VICTORIA'S SECRET WEBSITE. IF YOU DO NOT WISH TO VIEW THIS CONTENT, OR IF YOU'RE COMPANY HAS WEBSITE BLOCKING IN PLACE YOU MAY NOT BE ABLE TO GET TO THE SITE FROM WORK. PLEASE DO NOT GET IN TROUBLE AT WORK FOR TRYING TO HELP US! Do it from home instead. ;) You can vote once every 24 hours through May 15, and we greatly appreciate your help!

PLEASE vote, by clicking here.

Birthday Tribute

2009-04-10T11:20:00.002-04:00

Vivienne Esme Martin's first birthday is fast approaching.

This morning, her Daddy made a beautiful, meaningful suggestion to me, and we decided to create a tradition going forward to honor and remember Vivienne with love and joy on her birthday.

April's birthday flower is the daisy, and as you know, Vivi and Daddy (and Mommy, too) share a love of flowers. With that in mind, we plan to keep daisies in the house throughout April, and ask those that can do so to plant them, keep them and cherish them, for Vivi. We would absolutely LOVE to have a picture of anyone's daisies, and will put them up in a gallery here.

We also plan to take a trip to the zoo, every year on her birthday. In the future we will expand our family again, and share a wonderful experience each April 24 of going to the zoo with our children, talking about their sister in heaven, and celebrating our love for her.

And of course, at Easter my Newbunny will always be particularly in my thoughts and prayers, although this year I am praying most for my cousin Brodie, to be born on May 1.

Aiden

2009-04-03T18:08:00.002-04:00

As I've told almost everyone personally, but not yet been brave enough to write, our especially close friend Aiden passed away on March 17 - a month to the day from Vivienne's passing. I don't have words for my sadness for Aiden's family, other than to pray with most deep love for their peace and healing. And, of course, to know that Aiden, Vivienne and Diesel are looking down on us, with love for their bravest of parents, and encouragement that we stay strong.

I'm Still Here!

2009-04-03T18:01:00.002-04:00

Well, everyone knows I have pretty much dropped off the face of the planet for quite a few weeks. We've been having some of our most difficult times - picking up the threads of our lives without Vivienne, struggling to get back into a routine of daily activities, and so forth. Keeping food in the cupboards and basic housecleaning done has been nearly impossible.

But beyond that, I just don't know what to say. I look at pictures of Vivienne, and think about her - this tiny joy I could kiss and hold in my hands. I had her for such a short amount of time, but when I sit and think about it, to write, I become so saddened. I know her soul is smiling down from the clouds with her brothers in AT/RT assault, Diesel and Aiden. I can feel her joy and peace.

But it's not the same. We should be preparing for her first Easter, soon followed by her first birthday. I don't really know how to comprehend it all head-on, and so in part, I've focused on the more mundane things in life, to achieve forward momentum and peace in the knowledge I've always done right by my little one.

I hope to continue posting, but right now, I do not know what to say - other than thank you, everyone, for the ongoing love, support and encouragement. ESPECIALLY to those who have emailed or called me with nudges to keep my head up and my life moving.

A Friend in Need

2009-03-03T09:43:00.003-05:00

Jonathan needs our prayers, desperately.

After devastating MRI results last week, he will begin radiation right away in hopes of decimating a large spinal AT/RT. This child, and his family, have fought so hard and are in need of a miracle.

I cannot begin to express the positive influence that Jonathan's family had on the Martin family. Their compassion is limitless. They have created and continued to take the time to maintain Your Cancer Family Forums, which became a primary information source for me that answered so many questions and facilitated my (often complimented) level of understanding of brain tumors, chemotherapy drugs, side effects and experimental treatments.

With total honesty, I can say that we would NOT have made it as far as we did with the positivity we maintained, without Jonathan and his family. Many other families, I believe, can say the same thing.

Please keep Jonathan and Aiden, and each of their families, in your most heartfelt prayers. We are asking Vivi to recruit the angels and keep watch over them.

Donating Blood and Platelets

2009-03-03T09:18:00.003-05:00

Please remember to consider donating blood and/or platelets if you can. It would be a nice way to remember and honor Vivienne, whose life depended on such donations during her treatment. By helping other kids with their battles, and anyone who has been in an accident or has an illness, you would be doing a wonderful and brave service.

So, do it for Viv and for Diesel and for Evalyn - and Aiden, and Gabriel, and Amber, and Arhan and all of them.

Praying

2009-03-03T09:14:00.001-05:00

We are praying hard for Aiden today, who is having an MRI. We hope for good news, to see that this sweet and tough little guy is beating back the cancer.

Please remember him in your prayers.

Dreams

2009-02-26T09:14:00.002-05:00

Every few days my dreams get worse, right now I feel worse when asleep than I do during the day. This is somewhat frightening, because sleep had been my refuge. On the other hand, I wonder if by exploring feelings and experiencing such depths of fear and sadness during sleep, my body and brain are somehow protecting me from having to endure quite as much during the day. I wonder if it is a blessing in disguise?

I know that last night, there were some light points in my dream - riding. I was most definitely at Heaven's Gate Farm in my dream, riding, cantering, jumping even (!) and just being with everyone and with the horses. Again, I think that was a reminder that things are okay.

To All Who Were With Us in Spirit on Saturday

2009-02-25T09:09:00.002-05:00

To all those who were with us in spirit on Saturday:

Thank you for your love and prayers. Whether they were sent from a short distance away, from across the country or across the world, we felt them and were encouraged by the love.

We had a very simple service for Vivienne. Rather than a traditional funeral mass, because we made a research donation for future studies and chose cremation, and because Vivienne was so young, we were able to have a Mass of the Angels. It was very positive, hopeful, loving and encouraging. Vivi was remembered by my father, James P. McFadden, with these words:

In the Mass book I read each day since last June, when we first heard of Vivi's fateful diagnosis, I always got a chuckle out of an opening penitential prayer. it's Psalm 95 -- "Wash us with fresh water, Lord, wash us with fresh water, and we shall be as bright is new snow." I always said silently, "Dear God, hold the water, your Vivi, christened in her crib at Children's Hospital, is pure and innocent and already bright as newly fallen snow.

Mary and Justin say they were blessed with a sunny, sweet angel named Vivienne Esmé. She passed away during hospice care following recurrent disease after treatment since shortly after birth at Children's and St. Jude's Hospitals for Atypical Teratoid Rhabdoid Tumors in her brain and spine. There were some good times when tests showed Vivi was improving and had a chance to win over her affliction and she courageously fought in vain to do that.

There is another prayer recited in the supplications when Mass is held for the new baptismal candidates: It concludes: "May their names be written in the book of life." Well Vivi lived only nine and one-half months, but thanks to Mary's daily reports in her Blog, Vivi's name, trials, tribulations and JOYS are part of the book of life for so many people who love her. Through the blog, we have had all the smiles, joys and happiness an infant daughter could provide, even while coping with surgeries, chemo and radiation.

We also followed closely the adventures Vivi shared with her parents, the trip to the Memphis Zoo to meet the Pandas; opening Christmas presents, the Valentine's and St. Patrick's parties, her first pony ride and falling in love with a big stallion that attracted her eyes.

So Vivi really was well written in the book of life.

On behalf of Justin and Mary, I would like to thank our extended families and our friends, too numerous to mention, for their prayers and support. Every time one of you told us you were praying for us or said you are in my thoughts--it was so meaningful to us.

Mary and Justin now ask for special prayers for Gabriel, a little boy in the UK, and Aiden, a little boy in Memphis, who are fighting their hard battles against AT/RT. Also remember Diesel, who passed to heaven just recently. All three were as close as family and their parents gave us rock-solid support.
I would also like to thank Father Hagan, who married Mary and Justin, at a Nuptial Mass is this same church back in the Fall of 2007 and now undertook the sad duty of officiating at this beautiful Mass for their child.

Before I conclude I would like to invite all of you to return to our home here in Doylestown for a reception and lunch. We would really be happy if you would come. There are direction sheets available or just follow a family member.

But there is one more story. It was related by Vivi's grandmother, Catherine, from her dear cousin, Sandi, also a grandmother, who lives in Kentucky now, but was raised in Asheville and whose family has a long tradition of mysticism as part of their lives in the Great Smokey Mountains.

When Sandi is very upset about something, she says, "Oh, Mama." Her Mama is Catherine's favorite Aunt Gertrude, who died many years ago. In the past, when Sandi is distraught, she looks heavenward and exclaims,"Oh, Mama." She would hear her mother say, in sympathy, "I know." Nothing else.

Sandi didn't sleep Monday night from worrying about Vivi. When she got up at 6 a.m. Tuesday morning, she did not know that Vivi had died. Sandi said, "Oh, Mama." This time her mother replied,

"She's here."

Sandi said, "No, she's not!" But Sandi found out later that her mother had told her the truth.

We all know Vivi is in heaven with our loved ones crowded about her. She's not sitting by herself on an abstract cloud. She is a joy to all the people we love that we wish were still with us. That is cause for celebration.

Our faith in God remains strong.

From the service, we all were able to go directly back to my parents house, and all be together. The food, from Zakes, was a huge hit (especially those who haven't been spoiled their whole lives), and so you truly missed out. But we focused on good times, love and caring for each other.

To All Who Were With Us On Saturday

2009-02-25T08:50:00.002-05:00

To all who were with us on Saturday:

Thank you so very much for your time, your presence, your love, sharing your joy and focusing on a life WELL-LIVED. The support and the outpouring of care meant so much to us, and just being with so many people who care for my precious Queenling and for our family was a tangible sign of the power of that tiny little person.

I can't pretend I am doing as well the last couple days as I was then: I'm not. Reality is setting in, a lot of crying, and missing her, and some difficulty peeling my aching back off the couch and LIVING. But I shared with all of you my commitment to continue having a life well-lived (a mantra phrase for me, now). And that promise remains strong.

Thank you, again.

Blogging

2009-02-21T08:30:00.002-05:00

I am so, so incredibly grateful and happy that I started and maintained this blog. Due in no small part to the example and encouragement of my cousin Jessica with her blog, A Parent in Silver Spring, I took baby steps at the beginning and then ultimately really amped things up to post so frequently.

Thank you, Jessica!

When I wake up in the morning, one of the first things I do is come here to Viva la Vivi. I don't always have anything to say right away, but it is a place to connect with Vivi and to build, every day, a continuing love for her. I WISH she was here physically with me so I could show that love by parenting her and hugging her and playing with her, but Viva la Vivi helps me remember that my LOVE for her is eternal.

It makes me feel secure that her wonderful Vivi-isms will never be forgotten. I have a place to go anytime I want to hear her laugh or see her smile. I can remember how very MUCH she was loved by so many people, especially her parents. And that, along with everyone's kind words of love and encouragement, is really helping me.

To all those who have written, commented, signed the guestbook, called, sent flowers, sent food and done SO MANY countless things that have given us strength and peace - thank you. From the bottom of my heart thank you so very much. I don't always call and say thank you, or write back, or show my appreciation - but please know that so much of our peace, acceptance and continuing ability to find joy is down to YOU. We love you so very much.

Diesel, a Warrior Angel, 10/29/08-2/19/09

2009-02-20T18:07:00.003-05:00

Our friend Diesel from St. Jude has joined Vivienne in heaven, as a warrior angel who will forever look down on us. We MUST honor Vivi and Diesel together by being brave, patient, happy and kind in their memories. These two babies, so small, fought SO HARD against AT/RT, and yet exuded joy and LIFE.

Tomorrow, I want everyone - whether you will be praying with us in the church or at home - to say an extra prayer for Diesel and his family. This is VERY important.

Obituary

2009-02-20T11:25:00.002-05:00

For anyone who wants to read it, following is Vivienne's obituary from the Intelligencer:

Vivienne E. Martin

By: Auto Obits

The Intelligencer

Vivienne Esme Martin, beloved daughter of Justin and Mary (McFadden) Martin, died Tuesday at her home in Doylestown Township, at the tender age of 9 months old.

Born April 24, 2008, Vivienne fought a courageous battle against an aggressive and incurable type of brain and spine cancer called Atypical Teratoid Rhabdoid Tumors. That battle was supported by the compassionate doctors at Children's Hospital of Philadelphia and waged by the doctors at St. Jude Children's Research Hospital, where Vivienne made great strides.

Vivienne is survived by her grandparents, Christopher and Martha Martin of Mattawamkeag, Maine, and James and Catherine McFadden of Doylestown Township; her great-grandfather, Norris White of West Rockhill Township; her great-grandmother, Julia Mahoney of Pflugerville, Texas; and great-grandfather, Gerald Martin of Millinocket, Maine; and many loving uncles, aunts and cousins, including her godmother, Molly McFadden and godfather, Jared Ambrose.

We are all inspired by Vivienne's bravery and joy for life.

A Mass of the Angels will be celebrated at 1 p.m. Saturday at Our Lady of Mount Carmel Church, Doylestown.

In lieu of flowers, donations may be made to St. Jude Children's Research Hospital, 501 St. Jude Place, Memphis, TN or online at www.stjude.org, or to Le Bonheur Children's Medical Center, P.O. Box 41817, Memphis, TN 38174-1817.

February 19, 2009 2:50 AM

Signs

2009-02-20T07:56:00.004-05:00

A parent who lost a child in infancy reminded me of these words from Le Petite Prince, and I found them so touching and so beautiful that I wanted to post them here:

"In one of the stars I shall be living.
In one of them I shall be laughing.
And so it will be
As if all the stars were laughing
When you look at the stars at night."

This speaks so much about my feelings right now, in looking for signs of Vivienne everywhere and SEEING THEM.

I saw another sign this morning. I was out on my balcony (that is where I do most of my thinking), and I was talking to Vivi. I was sad this morning, I had bad dreams last night where she kept being born and then dying over and over and over, and I was in a lot of physical pain from my back and could barely sleep. During my morning chat with the Queenling, I looked up to the sky (which was particularly beautiful) and RIGHT next to each other were two clouds which for a moment were the shape of an angel, and a pony. Right next to each other. It was unmistakable for a moment, before they drifted and changed.

I am looking all over for signs from Viv, and that was definitely one.

Sweet Little Showoff

2009-02-19T11:51:00.002-05:00

Vivi is showing off again today.

She has sent lots of tiny, colorful little birds to us. Red ones, bright blue ones, yellow ones, little finches and sparrows and robins - just so many of them, flitting about our porch, perching on the rail and the table, and chirping merrily in the trees.

This has NEVER ever happened before. Snow for Daddy, and birds for Mommy.

I feel such joy in her little soul from this.

“She’s Here”

2009-02-18T14:29:00.006-05:00

A guest post from Vivi's Nana:

When Sandi is very upset about something, she says, "Oh, Mama." Her Mama is my favorite Aunt Gertrude, who died many years before Nana died. In the past, Sandi has only said, "Oh, Mama," from distress that Marty won't talk to Sandi or let her spend time with the two children. Marty is Sandi's daughter. When Sandi said, "Oh, Mama," she would hear her mother say, "I know."
Sandi didn't sleep Monday night from worrying about Vivi. When she got up at 6 a.m. Tuesday morning, she did not know that Vivi had died. Sandi said, "Oh, Mama." Her mother said, "She's here." Sandi's mother has never said anything but "I know."
Sandi and I agree that our mothers are having a fight about who can hold Vivi, and my mother is winning.

This positively gave me goosebumps, and reinforced my deeply-held conviction that Vivi is happy, peaceful and in good hands.

Snow

2009-02-18T14:04:00.002-05:00

It is snowing today - a gift from Vivienne, I am sure. She knows how much her Daddy loves snow, so promptly had the other angels show her how to make it. A quick learner, she.

Finding Smiles

2009-02-18T10:55:00.004-05:00

Vivienne was so selfless in life, she must have known that one day we would be working hard to find some joy and smiles. So, she gave all the smiles she could - she grinned, chuckled, smiled, smirked and beamed with her whole heart.

Here is today's Smile of the Day:

Waking Up Alone

2009-02-18T08:33:00.002-05:00

For the past many weeks, I have had an alarm set for 7am to wake up and give Vivienne her medicine, and take care of her morning needs. Last night, before bed, I canceled that alarm, thinking sleep would be important for my body now. Today, I woke up at 7:08am anyway, had a quick panic attack that I was going to be late on medicine, and then remembered.

Well, Vivienne - you hated your medicine, so I hope you are a happy girl to not have to take it anymore. And my dearest, you hated morning diaper changes, they were mere botheration delaying the onset of the one morning ritual you loved - snuggling with a ba to watch Howard Stern. Now I am not sure that they permit Howard Stern in Heaven, but I am SURE that Elmo is permitted. And besides, who needs Howard Stern when you have Caitlin to teach you how to ride Maggie May, and Greatnana and Uncle Tim to watch carefully over you.

One Day Without Her

2009-02-18T08:05:00.003-05:00

One Day Without Her

It's been:
One day, without holding my Vivi,
One day, without hearing her cry,
One day, without kissing her
and whispering,
"I'm here."

It's been:
One day, with the worst kind of loneliness,
One day, with unquenchable pain,
One day, of opening her bedroom door
knowing that,
She's gone.

One day of hearing her cry, even though she can't.
One day of arms aching to console her, even when she doesn't need it.
One day wishing my baby was here, not just in spirit.
One day of loving a baby, who I lost.

It's been:
One day that she is not in pain,
One day that she has perfect peace,
One day that she looked down on me
and whispered
"Mommy, I'm here."

Services

2009-02-17T09:21:00.002-05:00

Vivienne's services will take place on Saturday February 21, at 1pm, at Our Lady of Mount Carmel Church in Doylestown, PA. The address of Our Lady of Mount Carmel is 235 E. State Street, Doylestown, PA 18901, and the telephone number is 215-348-4190.

In lieu of flowers, please donate to St. Jude Childrens Research Hospital. St. Jude is a wonderful place, and as I keep mentioning, does not charge families anything for the care and treatment of their children. It costs St. Jude about $1.3m per day to operate, with only about $100,000 reimbursed by insurance. Our time in Memphis was full of hope, positivity and marked primarily by joy, and many people at St. Jude contributed to this with kind, compassionate nurses, the best and most caring doctors and all levels of other staff that put the CHILDREN first, all the time.

An Angel

2009-02-17T07:26:00.004-05:00

Vivienne, satisfied her instructions were in place and her parents were well-shown what strength and love really look like, went to Heaven last night.

It looks like Jesus came for her in her sleep, she looks as comfy and snug as ever, with no sign she had even a moment's fear (she never did - birth, life, death) or anxiety.

We love Vivienne very much, never more so than now.

Welcome

2009-02-16T21:35:00.002-05:00

We in the Vivi-verse JOYFULLY welcome our new cousin C. into the world, as of yesterday. We hope he is ready to lovingly submit to the bossiness of his older cousin, Vivi. I can assure everyone that Viv will be happy to use whatever time she has left to leave him a specific set of instructions of JUST how to manage his Mommy, his Daddy and ESPECIALLY the rest of the family.

We praise his Mommy, for setting a new standard of braveness and strength. Vivi, in all of her valiance, approves.

And to my Dad: Happy, wonderful, heartfelt congratulations on being a Great-granddad!!! I do not think you could have expectations high enough for this hallmark baby: he will earn every accolade we could give. His Mommy and Daddy will set him such a fine example, and raise him so well.

Bored, and Lonely

2009-02-16T21:31:00.002-05:00

I realize these may be weird and unusual emotions to express, but I have to admit it. I am bored and lonely without my Vivienne to care for. Since she was born, she has CONSUMED me. I have at times groaned to drop what I am doing and run to her, or wake up in the middle of the night, or juggle work and baby, but now...

Now I WISH that she would wake up, and cry, and need me.

I can't un-learn being a Mother: it's the most wonderful, meaningful challenge I've ever faced. I would do anything to skip a night going out to play with and care for my daughter. I MISS her, so much, though she is still here with me. Her existence is peaceful, quiet and sleepy - listening to Mommy talk about Daddy, her friends reading stories to her, Miss Bev rock her and making sure her feet are properly comfortable. But I MISS her needing me.

My Heart's BEST Love

2009-02-14T08:50:00.002-05:00

Happy Valentine's Day! "V" is for so many things - Vivi, of course, Valiance, Vivacity, Valentine - so many things that are important and exciting.

As always, I spent some time this morning looking for a Valentine's Day picture for Viva la Vivi. I saw so many pictures of little cherubic angel-children, a cutesy little messages. But this card, about "my heart's BEST love" seemed best.

I hope that I've always shown that BEST love toward Vivienne, and without being too prideful I think that I have. I am particularly inspired by Justin in this BEST love, because he shows such resilience and steadfastness when he loves someone. I am not going to define it, or try to explain how much I love Vivienne, because we all know. She gives us her best, and all we can do is try to deserve it by sharing her love, bravery and joy.

THANK YOU and BEST LOVE to all of those - too many to name - who have supported and cared for us.

A Special Prayer

2009-02-13T10:37:00.003-05:00

Our friend Aiden and his family need especial prayers today. Aiden and his family came to St. Jude at a time when I needed some extra support, and his mother Amanda became like a sister to me, making me feel loved, supported and encouraged; keeping me positive and being such a cheerleader for our babies.

Another mother whose son Connor has AT/RT shared this special prayer from a prayer card at Lourdes with me, and I hope that everyone joins me in praying it for all the babies and especially Aiden, today:

"O Holy Virgin, in the midst of your days of glory, do not forget the sorrows of this earth. Cast a merciful glance upon those who are suffering, struggling against difficulties, with their lips constantly pressed against life's bitter cup. Have pity on those who love each other and are separated. Have pity on our rebellious hearts. Have pity on our weak faith. Have pity on those we love. Have pity on those who weep, on those who pray, on those who fear. Grant hope and peace to all. Amen"

During our battle, I realized that the children I have met (or know through the community) with this horrible cancer are some of the BRAVEST, best, sweetest, most wonderful children. Vivienne, Aiden, Gabriel, Diesel and all of these babies are so very special. I pray constantly not just for Vivienne's health and peace, but for theirs as well. The world is a BETTER PLACE for their being in it.

The Definitive Vivi-isms

2009-02-12T16:39:00.002-05:00

Some things about Vivi that some people might know, others might not, and some which have been secrets until now!

Vivi hates to have her feet covered - be it a blanket, socks or shoes, she will get her toes free!
Vivi LOVES Elmo,
Vivi really likes to look at fish,
Vivi's favorite lullaby is Mommy's made up words to the Sleeping Beauty theme,
Vivi loves ponies, puppies, pandas and bunnies,
Vivi is a magpie, who is fascinated by staring at sparkling things,
Vivi has always loved her sleep, and started sleeping through the night when she was about three weeks old, over Memorial Day weekend 2008 at the Ocean City house,
Vivi loves to have stories read to her, a love that started when I read to her almost every day while I was pregnant, and grew over time to encompass Runaway Bunny, Goodnight Moon, On the Night You Were Born, Olivia and many of our other favorites,
Vivi was the first baby our friend Steve ever held,
Vivienne means "alive," and Esme means "beloved" - with life and love being the two most important gifts I wanted to give my daughter,
Vivi does NOT like Snow White, or the movie to Alice in Wonderland (although she likes the book very well),
Vivi is very ticklish,
Vivi once enjoyed a spicy sweet potato soup at Zakes, but always refused to eat sweet potato baby food,
Vivi's favorite color is orange,
Vivi was taught to laugh by her Grampy when we were in Maine last summer,
Vivienne has her OWN STAR named after her, in the Pegasus group (very fitting!),
Vivienne is from Brooklyn, NY, and only recently moved to Bucks County, where her Mommy grew up and now lives. She is a very cosmopolitan young lady who has done much traveling, and loves the sighs, smells and noises of a busy city block,
Vivienne's nickname at home is Hunca Munc a - one of the Two Bad Mice (although in all truth, Miss Vivi is a very GOOD mouse). We loved to watch the Beatrix Potter videos we got for Christmas - the combination of animation and real-life images (including ponies!) are nice for a baby,
Vivienne LOVES music - all kinds. From metal, to 80s music, to classical music and kids songs, she loves it,
Vivienne is NOT scared of very big horses like Simon, she will have you know,
Vivienne was born at 4:24pm on 4/24/08,
Vivienne's middle name was almost Elspeth, the Scottish form of Elizabeth, after Elizabeth Bennet from Jane Austen's Pride and Prejudice (Mommy's favorite book EVER), but Daddy and Nana did NOT like Elspeth. For some reason, Mommy had to have a middle name that started with "E". Other contendors were: Elinor/Eleanor, Eve, Emily and Evangeline.
Daddy was the first person to feed Vivienne, and the first to see her smile,
At home, Vivienne always slept either in a crib used by her Greatnana, or a cradle made by her Greatpop,
For a reason nobody knows, Vivi likes the TV show Fringe,
Vivi sat on a motorcycle with her Daddy at the Children's Museum of Memphis, and she was a natural. She was even better on CP!
Vivi has very big feet,
And this one everyone knows: Vivienne is deeply, utterly, completely BELOVED. From the longest strand of her growing-back hair down to the tiniest painted little toe. More people love Vivi than could ever be recounted, or thanked.

Have any other interesting pieced of Vivi-trivia? Comment, or send me an email and I will post it. Let's get as big a collection as we can!!

Optimism

2009-02-12T08:18:00.003-05:00

I am optimistic that today will be a better day.

I am optimistic that talking about my feelings yesterday, and crying a lot to Jesus and to Justin, who held me close, will open more room in my heart for love.

I am optimistic that Vivi knows when those who love her are near and takes courage and comfort from that.

I am optimistic that Vivienne's love, joy, bravery and spirit will stay with me, always.

I am optimistic that my feelings of jealousy and anger are temporary parts of the grief process, and will ease with the passage of time.

I am optimistic that reading the words of or talking to others who have suffered the loss of their precious child and succeeded in keeping faith, love and generosity foremost in their lives will help me find my way on that path.

I am optimistic that I will look back on my decisions regarding Vivienne's health and caring for my own mind and body during this time, without regret.

I am optimistic that I will always feel I have been the best mother I could be.

I am optimistic that I have learned the lesson of when and how to ask for help, and share my burdens with those willing to help.

I am optimistic that today will be a better day.

Confused

2009-02-11T10:51:00.003-05:00

Today is a difficult day.

It is a beautiful, spring-like day of healing, love and positive energy, but I am sad, sad, sad. I am confused, sad and can't understand why Vivi couldn't have a miracle. I know how terrible this disease is, but she is so good, and so brave and would have done such wonderful things. It feels so lonely and sad.

On the other hand, I am not lonely. I know how many people are supporting me, are sending their love, are encouraging me and are just a phone call, email, carrier pigeon, sky-write or telegram away if I need ANYTHING.

And I feel that, I utterly, totally, 100% do. But I don't know what to say when I talk about Vivi anymore - I admit I am angry. I admit I am jealous of the babies that have gotten or might get their miracles. I admit I am doubting. I admit I can't do it. I admit I cry for a short time over and over and over every day, filled with sadness and anger.

But then I hold Vivi and she snuggles into me, so very soothed by being held in her Mama's arms, so loving and so brave, and I remember why I have to keep it together - FOR VIVI. Everything and anything for Vivi.

Well, I am off to a special Mass to Our Lady of Lourdes to pray for Vivi.

Rett Syndrome - Close to our Heart

2009-02-10T14:22:00.002-05:00

Recently, I have begun to learn a little about a genetic developmental disease called Rett Syndrome, which affects almost exclusively little girls. Rett Syndrome is often not detected at first, but then development starts to backslide and milestones are lost.

Having seen developmental losses happen somewhat with Vivienne, whose disease also has a genetic component (although she has a de novo - or first time - mutation not inherited from her family), and remembering how sad it was to see that happen, the moment I learned about Rett Syndrome I wanted to act.

So, for Vivi, the compassionate and kind soul who would have wanted it so, please take a minute to read the material I've added on the sidebar about Rett Syndrome, and consider donating to or if possible attending the Ride for Rett at Heaven's Gate Farm on June 14, 2009.

New Feature

2009-02-10T11:29:00.003-05:00

Over on the right sidebar, I have added a Guestbook. The primary purpose of the Guestbook is for comments or notes that aren't related to any particular post, or any other chitter-chatter. Simply put, it's just another communication option.

All you need to do is scroll down to it, click "Post" and you can write a message to us. You can also reply to prior comments in the Guestbook, by clicking "[Be the first to] Post a Reply".

Where We Are

2009-02-10T09:53:00.002-05:00

It's hard to post on the blog right now.

I was always able, I think, to upkeep a sense of optimism and hope even when things were very scary. This, for me, inspired me to write and document not just our battle, but more the good times and wonderful memories.

Doing that was a success, as I see it. Yesterday I got very upset for awhile, remembering places we'd taken Vivi and experiences we won't get to have with her. But the blog has allowed me to keep good, funny memories close and I was able to bring them to the surface and turn tears into giggles. I didn't let myself think about the other side of that coin - that soon these positive memories and unending, permanent love will be the closest we can come to Vivienne. Because that is a sad reality of life, but one that makes the efforts undertaken in building such a strong memory foundation in the blog, even more important.

I still have somewhat of a writers block for what to say during this hospice time. I am not following ATRT research anymore, because it hurts too much - if a new drug or treatment comes up that Vivi missed out on, right now I simply don't want to know. I continue to keep up with all the ATRT Friends of Vivi, praying for them constantly and trying to send as much strength as I can their way. But those are their stories to tell.

I talk a lot about riding and Heaven's Gate because it is such a positive force in my life right now. Vivienne's opportunity to ride CP makes me feel that HGF is a place she and I share together, a place with positive energy and love for both of us, and where I will always feel especially close to Vivi in my soul.

And, I have so many personal pictures and stories from the past couple of weeks that have not made it on here yet - believe it or not we have still not fully unpacked the car from Memphis and the camera cord is SOMEWHERE in there (I hope!). But that will give me something to do in the coming weeks as well.

Today's goals are to keep praying, keep loving Vivi and make sure she's comfortable, support Justin and stretch my sore muscles out!!

A Nice Day in the Vivi-verse

2009-02-09T21:47:00.001-05:00

Vivienne's day got off to a bumpy start early this morning with a VERY upset tummy. Things improved, however, after she and I napped for a couple of hours snuggled up together on the couch with Sesame Street playing in the background.

Things got EVEN better when Nana came for awhile to lavish Viv with love and attention (and help Justin and me an awful lot, going the extra mile). Justin and I were able to have a nice lunch out today.

In the evening, I was blessed enough to be invited back to Heaven's Gate to ride again. My leg muscles are starting to improve, but my back is hurting so I plan to take a break until Saturday. I came happily home, ready to bestow kisses and love on Vivi from her HGF family, and Justin told me that Vivi did a lot of playing, grabbing her feet, reaching for the stars and awake time while I was gone, with barely any tummy trouble.

What utter joy!!

Champion Baby

2009-02-09T08:41:00.003-05:00

A new friend at HGF wrote this for Vivi, and called Vivi a CB - Champion Baby, who rode the pony CP - Champion Pony. Both CB and CP are sweet, patient and kind creatures, among the best of the best of their kinds.

Hope in the Air
By E.F.

Why
Do things happen for a reason
Why
Do they happen so fast
Why
Did this sparkling silver lining
Turn to gray disappear
Why
So young
Why
Nine months
Two to go
Make a Wish
Why
The glistening twinkle in her eye
When it locked on
Those horses
Why
She may never get to feel the ground with two feet
Or
Be who she could be
Why
Her
She may never get to take one-step
One-step would be good enough
Fight
Live
Breath
Ride
Because
There's
Hope in the air
Just remember
Yes, you can
Just a mother's wish

This really touched my heart and I almost cried, except that it was me who set the NO TEARS rule so I endeavored to keep it. But it reminded me that there is still plenty to hope for - one more smile, comfort and cuddles, and different little things that I can wish for for Vivienne.

And some of them are coming true - spending the day in her swing yesterday was a big deal (see updates), and today she was something of herself - eager for her binky and instantly soothed by being picked up and held by Mommy.

Early Days

2009-02-07T08:12:00.004-05:00

Just a reminder!

Vivi has been asking for a pony from day one - I remembered this picture this morning while trying to soothe her back to sleep after her morning medicines (which were so many - Dilantin, Zantac, Decadron, Morphine, Compazine, Ativan and Benadryl!). So I reminded Vivi how LUCKY she is that dearest CP and his friends at Heaven's Gate saved the day!

Seein' is Believin'

2009-02-05T11:12:00.003-05:00

HERE IS VIVIENNE ON HER VERY. FIRST. PONY. Delightful. We had a wonderful day at Heaven's Gate Farm, and they have more pictures on their website.

Medical Status

2009-02-05T09:21:00.002-05:00

Vivienne can feel very tired some days and can be a fireball others. I think a lot goes into this - some of her medicines can make her very sleepy, her eating can go up and down depending on how her tummy feels, sometimes we have a very busy day or days and sometimes she just plain doesn't feel good because she is, after all, a pretty sick baby.

But, here are some bullet points on her status:

Sleeping a bit more, but mostly pretty active when she's up,
Gets tired quickly,
Has not had ANY more seizures since January 17,
Throwing up pretty regularly but her nausea medicine helps a LOT,
Still learning new things like riding CP, trying to crawl, grabbing sparklies and holding glittery toys,
Sometimes fussy, sometimes not,
Does not seem to be in pain very often,
Still uses her gaze to follow objects pretty attentively,
Still very social.

So, we are seeing some changes in her but all is still as well as it could be. We feel confident that we are caring for Vivi and being compassionate in our choices to take her out in the world to her comfort level and let her rest as well.

IT HAPPENED

2009-02-04T21:30:00.003-05:00

Vivienne had her very first, most best, riding lesson today!! She had a BLAST, and loved her pony CP but fell especially in love with a GIANT horse named Simon.

MORE DETAILS TOMORROW.

But rest assured....pure fabulousness.

Even now she is trying to crawl for the first time, back to CP and Simon I am SURE.

My Magpie

2009-02-03T17:28:00.004-05:00

My sweet beloved adores her shiny things.

Today was a challenge. The morning was emotionally difficult - Vivienne has been sleeping a lot and we are beginning to be nervous about the immediate future. We both had a big cry and a long talk while Vivienne napped this morning.

Then, lo and behold, she proved us wrong. After waking up and demand to each piggily, our Queenling had seemed to want to go to sleep but adamantly refused to do so. She fussed quite a bit, until set up comfortably in her thrown, in front of the fire, watching Spongebob and playing with her shiny jewelry. She played happily, alternately by herself and then grinning widely at Mum and Daddy, for a few hours, before consenting to snug in for a nap.

Ohhhh! I love her.

St. Jude

2009-02-03T12:23:00.002-05:00

I still keep up with the stories of our friends from St. Jude and other AT/RT families, as much as I am able to do so.

It's almost the hardest thing for me - that I care about these babies so very much, but I am in a way jealous when I read that they are doing chemotherapy today, or had a good MRI. It's a combination of deep love and celebration and thankfulness for that family, for the child whose health and joy I desire so fiercely, and a bitter-tasting jealousy, wishing that Vivienne could have more chemotherapy, or that there was SOMETHING that could be done.

During treatment, there was a feeling of purpose and hope. Even when side effects were bothering Viv, there was hope that we would someday see her walk. I would have dreams at night where Vivienne was talking to me - sometimes the sentences of a grownup young lady, sometimes just baby "mama" and "dada" talk. That hope and Vivienne's indomitable attitude were, along with the support of friends and family, the things that kept me going. Now, we don't have hope. Vivienne is spending more and more time sleeping, and we know what we face.

But at root, my feeling is one that NONE, absolutely NONE of these children should have to be in this position at all. Not Vivi, none of the friends of Vivi. Those who can now count themselves survivors, as children or as adults, should not have had to fight this battle just to grow up. St. Jude gave us a wonderful gift of time with Vivi, and continues to give that all-important HOPE to our friends there and elsewhere.

So, we continue to admire the institution of St. Jude, pray with thanks for the doctors and researchers there, and support them financially. Dr. Gajjar and Andrea and Tabatha and Angie and all of those who helped us there, are our heroes.

More Pictures

2009-02-03T12:01:00.003-05:00

(Courtesy of Marissa)

We have some more pictures up at Flickr. We would be grateful for anyone who has any pictures of Vivi, to email them to me so that we can add them to our Flickr with credits (and to those who have already done so, thank you).

Vivi's First Crush

2009-02-03T11:37:00.010-05:00

A few days ago I promised some special stories. This is the first.

After a great lunch at Zakes (a story yet to be written), we had some friends over for a lovely evening of playing with our friend Vivi, sitting in front of the fire, drinking some wine and reuniting.

Four of us worked together to get a fire going. Lacking someone with any real skill at getting a real fire, we relied on Duraflame logs. They are easy, but they don't let off too much heat. This is a nice thing for us, because Vivi can sit closer than otherwise and admire the sparkling flame and her sparkly necklaces (Vivi is a total magpie).

Well, there was a problem.

Among the four of us, we were CERTAIN that the flue was open. When we left it as is, the smoke was going up into the chimney. When we changed it, the smoke floated out into the room. We examined this carefully - FOUR ADULTS, sound in mind and sober of spirits, and unanimously concluded that the flue was open.

Obviously, we were wrong.

Once the log crackled and split, a HUGE amount of smoke was pushed out into the room. We grabbed the babies, and went outside. Justin grabbed a fire extinguisher and put the fire out, but of course that quadrupled the smoke until you could not see a THING.

To be on the safe side, to ensure there was no chimney fire and to be cautious on Vivi's behalf, we called the fire department. They made sure there was no fire (there was not) and they used a special machine to clear all the smoke out of the house.

We were back in within 20 minutes, but not before Vivi found the man of her dreams.

State of the Union

2009-02-02T15:19:00.002-05:00

I admit I've been making a lot of excuses.

It's been really hard to post on the blog since we got home. My drive to stay relentlessly positive, hopeful and faithful has really been tested. I feel more awkward about what to say on the blog than people have felt awkward about what to say to me. Normally I think that when a family has a child sick, or a relative or friend, others don't know what to say. With Vivi, all of our friends and family have been simply perfect - it's me who has no clue what to say.

So many wonderful things have happened - I have stories and pictures to share, funny things, smiles and wonderful happenings in the Vivi-verse, but putting pen to paper has been harder than it ever was.

On the one hand, many of the reasons I had for keeping the blog don't exist anymore. But I don't feel like our time battling cancer is a story that has ended, it is most definitely an ongoing story. To consider that this story has a closing chapter is to consider that Vivi has a closing chapter, which is most certainly not the case.

But, understanding how the story changes, what the new chapters are now and how they will read in the future is somewhat beyond my capabilities. Feebly, I have been trying to keep things going as they were before, but obviously my soul realizes that is not quite right. Like Vivi, things - the story, our lives, the goals - have to change. But I just don't know how.

I know a lot more about what stays the same (and many things do) - love, faith, the importance of friends and family. So that is where I am going to stay right now.

And it Shall Be a Bunnyful Day Today

2009-01-31T10:23:00.003-05:00

Today, for that bunny of bunnies, that Queenbun, the bunnybutt herself, we are celebrating Easter. Not just the bunnylove, of course, but also the renewal, healing and hope associated with the holiday.

I am hopeful of liveblogging the day, if Uncle G will let Miss V use his laptop, and letting all our guests write posts, comment live without the need for approval, and collaborate on the building of today's memories.

It will be an experiment.

Slight Wrinkle

2009-01-30T11:13:00.002-05:00

Well, we had a slight wrinkle this week that can best be summed up as a whole lot of trouble for a very tiny, easily fixed thing.

Vivi's central line clotted off, meaning that a blod clot clogged the line so we could not use it for medicines. This was not a big problem, because there is no medicine Vivi takes that she MUST have via the line, but it is important to fix. First, we want to be able to use it in the future if Vivienne is uncomfortable taking "PO" (by mouth) meds. Secondly, we do NOT want the clot to pass into Vivienne's blood stream.

So, after a day of worrying about what should be done, we took Vivienne to see Dr. Kang at Children's Hospital of Philadelphia. There, they gave Vivi a checkup (which she passed with flying colors) and unclogged the line. It was nice to see everyone there again.

On the way home, we had a lot of traffic and Vivi was tired, bored and uncomfortable so she cried the WHOLE time. LUCKILY, the best thing of all that happened yesterday is - GRANDMOM IS HERE!! She flew in from Maine yesterday, forgave me for being an hour late to pick her up, and has been snuggling and cuddling Vivi non-stop.

As I would say to Viv, "it's wonderful!"

All is Well

2009-01-28T15:33:00.003-05:00

We have been having some incredible fun with Vivienne, who is doing VERY well. She is bright eyed, having fun and above all - HAPPY to be at home in her own house, with her own family and her own puppydog.

We are SO grateful to the constant flow of love, support, kind words about Vivienne and encouraging words to us. Without the strength of all of our friends and family (near and far), we would not be able to keep our commitment to make this time as enjoyable for us and for Vivienne as possible.

I promise I will continue to keep the blog updated - with regular internet service back up and running in the next couple of days we will have so much to share. The following previews are rated ELV - for Everyone who Loves Vivienne:

A wonderful lunch out together at Zakes',
An excited visit from some cuties care of the local fire department (all is well);
Dinners and good time spent with friends and family;
Tinkerbell;
Valentine's and St. Patrick's Day
And more!

What Good is a Book Without Pictures?

2009-01-24T18:59:00.003-05:00

We have had LOTS of grand adventures in the last couple of days, and words alone can't do justice. Once I can wrangle some pics up to accompany the thrilling stories, and illustrate the fun, I will have tales galore. Rest assured that we are having fun, and Vivienne is feeling FINE.

Special message to Isabel and Isla: Vivienne LOVES her pictures, and looked at them gleefully for a long time today. She wonders if she can have some reinforcements in the event a bossy octopus rears his many arms next week.

A Title Escapes Me

2009-01-23T11:54:00.002-05:00

I can't think of what to title this blog post, mainly because I can't nail down my feelings.

We had a wonderfully, blessedly comfortable trip home in a Lear jet yesterday thanks to a colleague's incredible generosity. There was not one single bit of trouble, stress, annoyance, anxiety (other than Justin's standard mortal fear of flying) or delay. It was a memorable experience, in a very positive way, that will stick with me for life. We were met at the private airport in Philadelphia by my Mom and Dad, who whisked us home as Vivi slept in her big-girl carseat. We settled in at home, had a visit from a hospice nurse, and then joined my parents for a delicious dinner.

Lulu was beside herself with joy to see her family reunited, and I do not exaggerate when I say that she cried and had to be restrained when we were leaving. But we will visit often.

Our regular hospice nurse, who is WONDERFUL, visited this morning and all is well. In the next few days, we plan to have a lot of fun. It will be exciting to reunite with friends and family that we have seen rarely or not at all in the past months, and to have them marvel over Vivienne's perfection.

Thank you, sincerely, to all who have sent love, helped, supported us, been excited to see us on our homecoming and so forth. And thank you, sincerely, to all those who have been our support system in Memphis - we could not have made it this far without you.

Arrangements

2009-01-21T17:06:00.000-05:00

We are making our final arrangements to leave Memphis and, as a result of a colleague's incredible generosity, fly privately rather than commercially home to Philadelphia. We expect to arrive in the late afternoon.

We have planned a series of events, and deliberately tried to host multiple events with smaller guest lists rather than a huge bash at this time. This is being done so that Vivienne is not overwhelmed, and so that she has the opportunity to spend quality time with all those who love her (rather than being passed around hot potato-style).

We plan to have a Valentines Day Party on Saturday January 23, a St. Patrick's Day Party on Sunday January 24 (which is also Vivi's big bad 9-month birthday) and a Homecoming Dance on Saturday January 30 (where we will crown Vivi Homecoming Queen). We also plan a trip to NYC and Brooklyn, some fun time with ponies and other events as time allows. We also hope to spend a lot of time snuggled with our Queenling in front of the fire, in peaceful and thankful love.