Update from Vic...

Hi Too All!
Today is August 16. 30 years ago Heather and Hillary were born. It seems like a long time ago but it also seems like it was way to short. Hillary has been gone now for a little more than 6 months but today was particularly hard. How many times was she asked her Birthday? Every time in the hospital when it came time to make sure what meds were being given or for admission or for whatever She always would say 8-16-82.
Since then my mom has passed away. I think she was broken hearted that she outlived her grand-daughter. She was a remarkable woman that Hillary and all of us admired. When I was down my mom would always say the right things and then pray hard for me. Most often to ST Jude --Saint of the impossible. Positive attitude and many prayers got us a long way.
We also lost a good friend and neighbor in June. The day after Nancy's birthday. Tony Zutter had lung cancer. He only had it a short time and the lord took him quickly. He is buried just a short distance from Hillary.

Hillary's grave stone is now in. Jon had a chip embedded in the granite that you can scan and it brings you to Hillary's Blog. Jon had been after me for a while to write something so that the Blog would have some fresh material. This one hasn't started off so positive so I have to be much more upbeat.

Xander is ready to start 4th grade in just 10 days. The summer has gone by quickly. Camping, Soccer and Basketball camps, a trip to Yankee Stadium to watch the Red Sox beat the Yankees were all high lites. TJ an friend of Jon's has been a great help. He has been ill and can;t work right now so he has been staying with Jon and xander and keeping Xander very busy during the day while Jon tries to to go to work. Jon is hoping to finish his mechanical engineering degree now. He had put that on hold to spend time with Hillary.

Happy birthday Heather. Heather is Pregnant. She found out that is going to be another boy. She was hoping for a girl and would have Named her Hillary. Allen is currently in Switzerland as a project manager for Johnson and Johnson. He is only there for a few days. Heather has her last class this weekend for her masters degree in special education. She always told me I was special and now she can teach me!!

Patrick and Grace are in there new house. Looks great. Still lots of things to do to get it finished but I think I still need to do a lot after 23 years. All seems good as they are higher up on the hill behind our house and can look down on us.

Nancy has had a tough day today. We went to the movies to try to keep our minds off the day. Xander was with us. He wanted to see " Timothy Greene" I was good till the end when he said something about living just a short time. Not a dry tear in the house! This week Nancy found out she has to have a spot removed. It has the c--- word. Usually Skin Cancer is not a big worry but-- that C word scares us to death-- Bad line. She also found out why she is having so much back pain. The MRI shows an extra Vertebrae. Yes she is an X-man or X woman in this case. We always knew she had hidden power that you would never know. She Bear has a lot of backbone.

Me I am working a lot. Keeping very busy has kept my heart beating. Still staying very positive. Last year Hillary made 88 trips to Dartmouth plus many other places. I think I took her to about half of them. That gives me way too much time, so like Hillary I filled it with more stuff.

Now maybe I can sleep. Got lots of stuff off my chest and sent it on to you. Thank God we have had the best support from all our family and friends. With out you all I am not sure I would have been strong enough. I thank you all for being my care giver.

Vic Nancy, Patrick and Grace, Heather ,Allen, Pierce, Preston and ?, Jon and Xander and especially our heavenly Angel Hillary

Happy Birthday!!

Happy Birthday to Hillary and her beautiful twin Heather!  In the words of Brian… “TWINS RULE!” 

As Jon has said in the previous post, it has been six months.  I still can't believe it has been six months.  Where does the time go?  I can still see her bright smile and her laugh.  There were a bunch of us that were together last week.  Baldies Blog was brought up.  People have been wondering how the family and friends have been doing.  Well….like always, there are good days and bad days. I can't speak for everyone else, but I can tell you that the 6^th of each month is a difficult day all around for everyone.   The good days are coming more often, but a day does not go by where I don’t hope that my phone is going to go off with a text or cheery phone call from Hill is going to be there.  I still have my texts from February 4^th, two days before she passed away, on my phone.  And there they will stay. 

A lot has gone on in the last six months.  However, if you asked me what happened from February to April (or early May) I couldn’t really tell you.  It was really a blur.  I honestly can’t remember much that happened.  I do know that with the help of the awesome support system that Hillary put into place along her journey guided me, and others, through the last 6 months.  We just kind of went through the motions to try and get some sense of normalcy.

Somewhere in there the White Tigers and White Tigers Too started our Relay for Life Journey.  By June we had 32 team members, earned about $7,000, earned Gold Team status, and even got Barry to wear a dress (he would do anything for Hillary!).  Our team won 2^nd place for our Apples to Apple booth (the theme was board games).  But more importantly our team earned 1^st place for cancer messaging for the work done with Patients as Partners.  That is the one I know Hill would be proud of.  That tells me right there that we are continuing her fight and making her voice louder!  At the same time…Relay was hard.  Hillary loved Relay for Life.  She loved making people aware of every aspect to fighting the “cancer meanie.”  It was hard to be there without her (even though I know she really was there)!

Along the Relay for Life journey we had MANY fundraisers that many of you helped to make successful.  We made bracelets, ordered bracelets (that are still available too!), had 2 Pizza Hut events, had a Black and White party, and sold some pretty awesome t-shirts.  I am probably missing some, but it’s late and I am tired. J  I have to say that all of that was fun, emotional, and rewarding.  To be honest this was the way I grieved the most.  I threw myself into spreading the word and fighting the fight.  I have to say…now that it is over I am finding other things to do.  It does leave more time to think.  Which is good….I keep telling myself. 

Along with Relay for Life, there is Patients as Partners.  Hillary’s amazing twin sister as completely ran with the much needed non-profit.  She has met with several doctors, hospitals, legislators, and the list goes on and on!  She headed up the first big fundraiser with Pink Pint Night in Claremont.  It was a HUGE success and I can’t wait for next year.  I also can’t wait to help Heather make Patients as Partners become a reality!  Here is the plug….check out the website www.patientsaspartners.com! 

Along with all of these happenings has come a lot of reflection on life.  Hillary has helped me, and others, in more ways that she probably knew.  I know that many people feel the same way, and I have heard many people say this to me over the last 6 months.  “She was an amazing person” has been said to me more times than I can count.  I don’t want that to lose meaning because it has been said so much, but it is true.  I feel like it is a little bit of an understatement, but totally true.  I am just glad that I was able to tell her how much I appreciated her and how proud I am to be her friend.  I thank her everyday for what she has given me.  She has given me strength I didn’t know I had.  She has given me lifelong friends that I met through her.  We now share a special bond that nothing could replace.  She has taught me that life is short, and I should live it up.  She taught me that I need to use my voice and stand up for what I believe in.  She has given me a second family that I am truly blessed to be a part of.  She has given me two pea pods that I am not sure I would have gotten through this without.  I really feel that she has taken care of me and is continuing to take care of me. 

The other night Michelle and I went to have girl time with Hill.  I know she was there on her “bed” having girl time with us.  We always had girl time on her bed….man I miss that.  It was good to be there with her the other night.  Michelle and I said people would think we were weird to go hang out with Hill at the cemetery at 10:00 at night.  Well, if you knew Hill she would have done the same thing!  J  And I keep telling people that there is no rule book telling you how you HAVE to grieve.  There is no “right” way to deal with grief.  I think people should do what make them feel good (as long as it is healthy and safe).  So that is exactly what we were doing.  We needed to have girl time with Hill….so we did!!!! 

Today….to celebrate her 30^th birthday we will go again.  We will celebrate her birthday with her.  We will be bringing her a tiara with 30 on it!  And I am pretty sure there will be cupcakes involved!  What birthday celebration doesn’t have cake!?!             

Until next time....
Brynn

It's Been Six Months

Life has been crazy these last six months. So much has happened. Something important is finally in place. Here are the pictures of Hillary's headstone.

The backside of the stone. Notice it makes reference to Baldie's Blog. The QR barcode reader is under the angel. It links right to this site. Over a year ago I told Hillary these would be the future and she needed to write about these and how they will change things. I found a company that made one for me. All you have to do is download an app. on your phone or tablet, turn on the app. it works with your camera. If you have the right app. you will just need to place the bar in the center of the viewer and it will automagically bring you to Baldies Blog.

This is the frontside of the stone.

The stone represents everything about Hillary. If you know her, you will be able to pick up even the little details. It's also Xander approved. Hillary told me nothing too big for a headstone but I felt anything less would be wrong for a remarkable person. That's why it took me forever to pick the perfect stone. Hillary will forgive me for what I paid to make it perfect. She always loved the end results of everything I did even if she could not see it in the beginning. She always trusted me.

Lessons Learned

here is our girl...still making the paper!

‘She's Always Been a Fighter'

By Chris Fleisher
Valley News Staff Writer

Charlestown -- All that Hillary St. Pierre-Ford wanted was a second opinion.

It was December 2006 and just nine months prior, at the age of 23, she had been diagnosed with Hodgkin's Lymphoma.

An emergency room nurse by profession, St. Pierre-Ford educated herself about the disease and discussed treatment options with her doctors at Dartmouth-Hitchcock Medical Center. Still, she wanted to hear another opinion. Memorial Sloan-Kettering Cancer Center was her choice. Her doctors went about setting up an appointment. It would take six weeks, she was told.

“As aggressive as her cancer was, she didn't have six weeks,” said Nancy St. Pierre, her mother.

Having been on the other side of health care, St. Pierre-Ford knew how the system worked. But she could not believe that in a digital era when patient information could be transmitted instantaneously, that a dying person would have to wait six weeks before they could even be seen at another hospital.

In fact, she didn't have to wait that long. St. Pierre-Ford used her technological savvy and her knowledge of the health care system to get her record sent to Sloan-Kettering. She got an opinion back two days later.

The doctors at Sloan-Kettering told her pretty much the same thing she heard at DHMC. Yet, the experience proved to be a revelation about how the current health care system was failing patients. She decided then that there had to be a faster, more efficient way to provide care.

“It was clear that people who did not have the network she had, or the knowledge she had, or the chutzpah she had, were dying,” St. Pierre said.

Last month, St. Pierre-Ford died at the age of 29. But until the moment that cancer claimed her life, she was determined not to let her experience as a patient go to waste. She turned her frustration into action, advocating for reform at the federal and state levels, writing about her experience on her blog and the news website Huffington Post, and becoming a voice for patients who she felt were being neglected by the system.

Once an aspiring communications major at the College of New Rochelle in New York, St. Pierre-Ford used her writing and technology skills to raise awareness of problems within the health care system and also suggest ways to solve them. Her legacy could be an electronic health record system, called “Patients as Partners,” that acts as a kind of “Facebook” for health care, where multiple providers from different hospitals can communicate in one place about a single patient.

She designed the project from her bed, then patented it and gave it to the state of New Hampshire, which is now considering it as part of a larger effort to create an electronic medical records exchange program.

Those people who came to know St. Pierre-Ford after her diagnosis in April 2006 were impressed by the scope of her accomplishments in such a brief and difficult period at the end of her life. But her closest friends and family -- the people who knew her before she was a patient -- were well aware of what she was capable of.

“When Hillary was born, we almost lost her,” said John West, the retired Claremont physician who delivered Hillary, and her twin sister, Heather. “She wasn't breathing, her heart beat was slow… From then on, she's always been a fighter.”

A Call to Nursing

A smart and ambitious small-town girl from Charlestown, St. Pierre-Ford set her sights high after graduating from Fall Mountain Regional High School in 2001.

She wanted to be in New York City and decided to attend a college just north of there in New Rochelle, N.Y.

St. Pierre-Ford was a talented writer and had plans to become a communications major. But during her freshman year, in September 2001, she had a change of heart.

The Sept. 11 attacks created a critical and immediate need for health care workers to treat injured victims. Bearing witness to that became her calling to be a nurse.

“She decided throughout that first semester that it didn't make sense to stay in communications when she could do more in nursing,” said Victor St. Pierre, her father.

St. Pierre-Ford entered the nursing program at New Rochelle the following semester and immediately developed a passion for the work. Never one to shy from a challenge, she craved the intensity of the emergency room and worked as a nurse's aid in rough parts of the city, including a hospital ER in the Bronx.

“I remember when she had her first gunshot victim,” said Nancy St. Pierre. “She called me and was so excited.”

St. Pierre-Ford found working in Harlem and in the Bronx to be exhilarating and fulfilling. Meanwhile, she excelled in her classes and was on her way to graduating with honors. Then, just before her junior year began, St. Pierre-Ford learned that she was pregnant.

She gave birth to her son, Xander, over spring break of that year. It would change everything, Victor St. Pierre said, ultimately convincing her to return to Charlestown to raise her child.

“She originally wanted to stay in New York, get away from this little town and spread her wings,” Victor St. Pierre said. “But Xander made things different.”

After graduating Summa Cum Laude in 2004, Hillary St. Pierre-Ford returned home to raise a child and begin her career. She married Xander's father, Jon, that September and was hired at Valley Regional Hospital as a nurse in the emergency department.

Frank Schell, who was an internist at Valley Regional, said he was immediately impressed.

“She was truly a remarkable nurse,” he said. “She was always a go-to person.”

Over the next year and a half, St. Pierre-Ford's career took off. She decided to pursue studies to become a nurse practitioner. (West felt she should be a doctor.) Then, on April 5, 2006, all those plans took a back seat.

“She had just signed up for that (nurse practitioner) program when all of a sudden, this damn lump occurred in her neck,” West said.

West drove with her to DHMC on the day of her diagnosis. It was Hodgkin's Lymphoma, a disease in which “95 percent of the cases are curable,” West said.

Afterwards, they went to eat at Three Tomatoes Trattoria in Lebanon and talked. She was concerned, but resolved not to let it control her life.

“Hillary really wanted to live for a number of things,” West said. “Primarily, Xander, but she felt she had a lot to do. And she did it.”

Struggles Within the System

St. Pierre Ford began seeking treatment for her cancer at DHMC. But it was not the only place she would get care.

She would consult with doctors at Dana Farber Cancer Institute in Boston and New York-Presbyterian at Columbia University in New York City. She also sought guidance of colleagues such as Schell.

Early on, everyone was optimistic, Schell said.

“She had what should have been a highly curable disease,” said Schell, who is now an oncologist at DHMC. “And she had an ace in the hole, which was her twin sister.”

In early 2007, St. Pierre-Ford underwent a bone marrow transplant with her sister, Heather, as the donor. Unfortunately, it did not take, and she had another transplant, this time from a European donor, the following year.

The cancer kept coming back -- 13 times in all. At one point, she learned about a clinical trial for an experimental cancer drug at Dana Farber. She wanted to be a part of it.

But coordination between DHMC and Dana Farber proved to be difficult.

“She was in a no-man's land for six weeks,” said Victor St. Pierre. “Both thought the other was treating her.”

“It was hard to get the records, not out of DHMC, but just get them coordinated,” West said. “It was like (Dana Farber and DHMC) weren't quite connecting with each other.”

Schell wasn't part of her care team, but he offered to make some calls for her. Eventually, the situation was ironed out.

Although uncommon, patients can manage many aspects of their own care, Schell said. But not many people have the knowledge or will to do so.

“Patients rarely feel empowered, because they don't understand the system,” he said. “They don't know how it works.”

Federal privacy laws under the Health Insurance Portability and Accountability Act can become an enormous obstacle for physicians who need to share patient information. Such laws are well intentioned, as they seek to protect patient privacy, Schell said. But they can also create bureaucracy that hinders quick access to care.

“The problem is that it's very complex and as much as the data transfer needs to be efficient, you have to guard against dissemination of information beyond the scope of where the patient wants it,” he said. “But once the decision is made, it should happen at the speed of light.”

There were other concerns. She wrote on her blog, called “Baldie's Blog,” and for other Web publications about the immense costs to her family, how insurance maximums would cut off life-prolonging treatments. Last year, she wrote for the Huffington Post about how health care costs were forcing her to consider a “Medicaid divorce,” in which she would legally divorce her husband to protect his financial assets and, in becoming single and destitute, make herself eligible for Medicaid to pay for care. (She and Jon did not divorce.) Private insurance, she found, would not cover many treatments.

Relying on digital media to spread her message, St. Pierre-Ford wondered why her doctors couldn't use the same technology to better coordinate her care. That's when she started a project.

“She felt, there has got to be a better way and a faster way and a more efficient way of having treatment than this,” said Nancy St. Pierre. “That's when Patients as Partners was started.”

Patients as Partners

Her concept was an electronic health record system, in which patients would have control of their own information while allowing health care providers access.

By allowing patients to control what information was available in an online network, they might be able to get around restrictive privacy laws because the patient would have consented to releasing that information. That way, any physician who was caring for that patient would have access to the records instantaneously, and whenever they needed.

St. Pierre-Ford patented the system and gave it to the state of New Hampshire to consider as it develops its own electronic medical records exchange program, a part of federal health reform.

State Sen. Bob Odell, R-Lempster, has been appointed to the board of the New Hampshire Health Information Organization, which is overseeing the rollout of that program.

Odell first met St. Pierre-Ford in 2007 during a public hearing about the state budget at River Valley Community College in Claremont. She was an “impassioned” speaker, he recalled, and very convincing about the need to continue funding for various health care-related programs.

The following year, Odell's wife was diagnosed with cancer.

“When Hillary found out about that, she contacted me to ask how I was doing,” Odell said in an interview last week. “Our relationship went from being about public policy issues to become very personal.”

That personal relationship with St. Pierre-Ford, and hearing her frustrations, also deepened his understanding of the need for better communication between providers.

“We think about health records as being the future and located in one hospital,” he said. “But what happens when you're moving around the country? We don't have a system to do that.”

Most hospitals in the Upper Valley, and indeed throughout the nation, are implementing electronic health records systems in order to streamline care. Legislation passed in 2009 as part of the stimulus bill authorized federal incentives -- through Medicare and Medicaid -- to health care providers that put in place comprehensive electronic systems by 2014. But not all of these systems are compatible with one another, and there have been concerns raised about transferring patient data between institutions.

Hospital officials, including those at DHMC, have said they are aware of the challenges in getting the various software platforms to “talk” with each other.

The man who is leading DHMC's conversion to electronic records, Andrew Gettinger, said the hospital continues to make strides in improving electronic communication with other health care providers. He had concerns with a system that would allow patients to be selective about which information was shared -- they might suppress crucial information that a doctor would need to know.

Generally, however, there is a great need to be able to share patient records electronically through a health information exchange, he said.

“I am completely supportive of that. I think that's an important thing,” said Gettinger, who is medical director of information systems and informatics at DHMC. “I quite frankly would love to have more enthusiasm for it and quite frankly funding for it, both at the federal level and at the state level.”

Schell thought it would be nice if St. Pierre-Ford's idea could play a role in developing New Hampshire's exchange.

“If that is a success, it would be a truly fitting legacy for her,” he said.

St. Pierre-Ford was, indeed, frustrated with many aspects of the health care system but held great hope for federal reform efforts, even if she did not live long enough to benefit from them, said her friends and family.

The urgency St. Pierre-Ford felt for reform wasn't to save only herself, said Nancy St. Pierre. She was fortunate to know the system well enough to be her own advocate, which led to better care. In some respects, St. Pierre-Ford actually enjoyed a position of privilege.

And that disparity in the care patients received, Nancy St. Pierre said, is what drove her daughter to fight.

“She felt that just because you don't have the knowledge, or just because you don't have the self-esteem,” she said, “shouldn't be a reason why you don’t survive your disease.”

Chris Fleisher can be reached at 603-727-3229 or cfleisher@vnews.com.

Fundraiser!

Hello Blog Readers! 
We have had a lot of requests about bracelets for men and children.  So we have designed a silicone bracelet to raise money for Relay for Life, Xander's college fund, and The North Charlestown Community School Playground Fund. 

The pictures are below.  The thicker bracelet is for kids (in youth size), and the thinner bracelet is for adults. If you are interested in supporting Hillary's dream by wearing one of these bracelets please let me know! 

We are selling them for $2.00 a piece. 

Just send an email to Brynn Kane at teacherbrynn@yahoo.com

Thank you for your support! 

Patients as Partners

Check out the new Facebook page.  Go to the link and "like" it!

The mission of Patients as Partners is to allow health care providers to share clinical information electronically- among providers in NH and then later between in-state and out-of-state providers.

BRACELETS!!!

Last Christmas Nancy gave a bunch of close friends to Hillary a bracelet to show how much she appreciated the help and support they have given to Hillary over the years.  Over the last month a few more have gone out to some more special people.

We have gotten many compliments on these bracelets.  The bracelets have a bead for each color cancer ribbon.  There will be a silver cancer ribbon charm, and a purse charm (special for Hillary).  They show support for ALL loved ones who are fighting the ultimate fight.

For another fundraiser towards Relay for Life, Xander's college fund, and the North Charlestown Community School Playground Fund, we are going to make and sell the bracelets.

1 bracelet for $10.00 or  2 for $15.00

If you would like to order a bracelet please contact
Brynn Kane
teacherbrynn@yahoo.com

ULTIMATE GIRL FIGHTER SHIRTS!!!

The shirts are in!
Hillary's friends and family are selling t-shirts to raise money for Relay for Life, Xander's college fund, and the North Charlestown Community School Playground Fund.

Prices:
Small, Medium, and Large - $12.00
X-Large to 3XL - $15.00

See pictures below.  The front is first and the back is second.

If you would like to order a shirt please contact:
Michelle Springer
michelle.l.springer@hitchcock.org

AND DON'T FORGET TO CHECK OUT OUR LINK TO DONATE TO THE RELAY FOR LIFE TO THE RIGHT! :)

Sen. Bob Odell's Words

Hi too all
Happy day. I slept all night. Some wood cutting and a basketball practice with Xander can make you tired!I just had to send along the front page article from the Claremont Eagle times from yesterday. I think this will answer some of Frank Eastons "so What"? I think Hillary had always gone the extra step to make it happen. I hope to be the consumer advocate on this Health Information Board.


God Bless Hillary
God bless us all

Vic

More To Come

First off, I would like to thank all the support you have given my wife. This Blog is her life, her joy, her love. If she could not sleep she would be here writing. If she had a thought she would be here writing. If she had a dream, a problem, an idea, a focus, or just wanted to write this is where she would be. You are inspiration to her writings. Xander and I thank you for being there. I wish I could say more on how much everyones support means to me but I do not have the talent Hillary does when it comes to words.

I do have a story to share with everyone.

When Hillary first started college she wanted to be a writer or editor. She was going after a degree in communications and what better place than NYC area. Her freshmen year she became editor and writer. The teachers saw her talent and wanted to expose her talent to everyone. She received A+ grades in every class and did an excellent job for the newspaper. 9/11 happened at the point and NYC was hurting. Communication jobs were starting to become more difficult to find so Hillary was thinking about a different job. She talked to me and others. She was really thinking about nursing. I told her that she was an excellent writer and she should go after the nursing career. Her thought process was, she could become a nurse and could travel to say, Africa as a nurse by helping people and than she could write about it as a reporter. She thought she found a way into these countries that needed help by becoming a nurse and writing about all the bad things going on. The nursing classes started (I think the end of her freshmen year) and she went to school in the summers and received a BS nursing degree. I want you to know she was only in school for a total of 3 years when it takes 4 years for a nursing degree, that included the first year in communications. She also had the highest GPA in nursing when she graduated. She was perfect for the job. She always set goals for herself and completed them. That is just one of the things I love about her (self driven).

There are 4 new Posts besides this one. Her Baldie's Blog will continue as long as possible. Vic will have more updates and maybe I will share more stories on how she lived.

Vic's Update

Hi Too all
Yes it's 3:00 am again. It seems to be a theme. This time is different. the Emotions are completely changed. While I am still broken hearted I am very proud. Not so much as for what Hillary has accomplished but for what her friends have done. My girls from the 3rd and 4th Grade basketball team were all there. To see them develop from 8-9 year olds to the most beautiful, intelligent, successful group of women that I have ever met is a magnificent feeling. I could see a part of My self, Heather and Hillary with them.
I can see Xander with a lot of these traits at this age. I can see Jon at the same age as I was then. But what I don't see is the mom's that were so supportive of those girls 20 years ago. I know that Xander will be missing his mom and no one can replace her. I cannot predict the future but if History can repeat itself, Xander will be a strong successful man that can change the world 20 years from now.

Hillary Clinton Coined a phase that said something like: It Takes a community to educate a child. I think that Is 1 statement that rings true. Our Hillary has the most beautiful community of support. I think of the community as a small, close knit, geographical location. Hillary built a community without boundaries, without any prejudice, without color or nationality barriers. She could see inner beauty. 

Hillary was a mirror image twin. When she smiled, it would penetrate and reflect an image back to her. If your heart had love in it she would bring it out. If it didn't she would discard you for people with a positive view. 

Wow way too many random thoughts tonight to get anything to flow. I am just overwhelmed at what has happened this week. Collette told us yesterday that this was her first funeral ever. I think we set the bar pretty high. The lines were unbelievable long the funeral was long but we had so much to say. We know we missed a lot of people that wanted to give their respects. We were just over whelmed with love and support!!

I will share this. That every time I hear " Hear I am Lord" I will break down and cry. No one could do it better than Jandee and Joe at the Funeral. Every time I hear "Halo" I will think of Hillary the angel.

. I still have Hillary's note to me from her "Just in Case" file to read. It will be a while before I can get to that. 
I can't begin to tell you how much we thank you all

God Bless Hillary and all her friends

Frank's Eulogy (Bigger Than Life, Bigger Than My Words)

Team St. Pierre-Ford – Bigger Than Life. 

A Lesson In Courage … Caring … & Family … A tribute to Hillary 

 

 5 years ago … life as I knew it changed.  My father, then 90, was admitted to the hospital with 

congestive heart failure. 

 

 He was a determined man.  He knew what he wanted, how he wanted it & when … he left little 

room for negotiation.  For example he was never far from Shasha his beloved German Shepherd. 

 

 However hospitals have rules.  So I parked the car where he see her out the window & I’d go out 

every hour or so all week … to walk the dog & warm up the car. 

 

 During one of those jaunts, a shy little 3 year old boy approached me carrying a Tyrannosaurus 

rex.  I told him I used to play with a real T-rex when I was his age because they lived in my 

neighborhood then.  Although only 3, I don’t think he bought that. 

 

 He then asked if he could pet Sasha & I of course agreed. 

 

 I learned later, that I was the 1st stranger he had approached on his own to talk with.  Of course, it 

was the dog … not me … but it still makes me feel special. 

 

 As we walked across the parking lot, he asked if I was there to visit my Mommy too?  His dad told 

me his 24 year old wife had Hodgkin’s Lymphoma & was at Mary Hitchcock where her twin sister 

Heather was donating bone marrow. 

 

 Little did I know that chance encounter would change my life.  He was the connection that brought 

Hillary into my life … & into the lives of so many of my friends.  He was none other than Xander … 

World Class Frog Catcher Extraordinaire. 

 

 And today … I want to thank my buddy Xander … for giving me a gift that I shall cherish for the 

rest of my life. 

 

 Thank you for introducing me to your mother and inviting me into your family. 

 

 When Vic asked if I’d give a Eulogy, I quickly told him I would be honored. 

 

 However, after agreeing to speak today, the reality set in.  The enormity of the task dawned on me 

& brought back memories of a drive I had to make in the middle of the night in 1999 to tell my dad 

that his daughter, my sister had been murdered.  What words would I choose? 

 

 I have struggled, in like fashion, with what to say today. 

 

 What could I say that could capture the essence of Hillary? 

 

 I’m not going to attempt to recount Hillary’s accomplishments … we’d be here all weekend & I’d 

likely miss many of them!!  They were legion. 

 

 Instead, I’m going to talk about what the Hillary experience has meant to me. 

 

 She was bigger than life!!  She was in fact, bigger than my words 

 

 Eileen, a friend from Keene State, wrote suggesting 3 words that symbolize Hillary … Hope … 

Faith … & Grace.  3 simple words, but not so simple concepts.   

 

 Hope … can mean many things... a wish, a dream, a desire, a feeling when you are down and 

out.  Over the years, we’ve all had hopes for Hillary … many of them realized ... albeit sadly the 

hope for a cure was not.  But she continued to push forward right to the end. 

 

 Faith ... the dictionary describes this as the ability to believe in something you can't see … but it 

means so much more.  For Hillary and her family, it helped them through some of the darkest 

days when no matter how hard they tried, they couldn't control the situation & were forced to 

accept it, not in a complacent way, but in a faithful way which brings a form of inner peace.  Faith 

is continuing treatment, even if it isn’t likely to work & may in fact make you feel worse because it 

may help someone else. 

 

 Grace … is the hardest and most mysterious.  Hillary showed grace as she put all the symptoms 

and illness complications aside to write in her blog … to design and make jewelry … to coach or 

attend Xander's games … to laugh with a college friend … or to humor an old War Horse like me.  

Hillary showed grace when she continued to live … chin up … helping others less fortunate then 

herself even as all that she hoped to accomplish got yanked out from underneath her.  We saw 

grace before she died, when she seemed to make peace … with herself … her world … her life … 

& she passed peacefully out of this world into the next where there is no pain. 

 

 She was bigger than life!!  She was bigger than my words 

 

 Team St. Pierre-Ford, is about courage … it’s about forging ahead in spite of the challenges. 

 

 The 1st day I met Hillary, I also met her mother Nancy.  Things were kind of rough so to cheer 

them up, so I bought a huge rainbow colored Dragon!!  When I gave it to Hillary … I said I don’t 

believe in free lunches so there is a condition that comes with this dragon.  You can take it & give 

it to Xander … but you must promise me that you will never EVER give up fighting!!  If you do … 

you will have to take that Dragon away from that cute little boy & give it back.  Because I don’t 

give Dragons to quitters!!  She never blinked.  She said “It’s a deal.” 

 

 And she lived up to that deal … over the next 5+ years, she NEVER once quit fighting!! 

 

 In one of Vic’s last Updates, he described how the Hodgkin’s kept finding ways to mutate & come 

back after every type of chemo they could give her.  After radiation, the cancer moved.  She had 2 

different types of bone marrow transplants & the 2nd one created a complication called Graff vs. 

Host disease which caused problems with her eyes, lungs, kidney & liver.  In spite of beating the 

cancer 13 times, it came back for a 14th time!! 

 

 Yet even then, she talked of getting more chemo.  I always believed that while she was realistic 

about her chances, she always hoped that maybe they would learn something that would help 

someone else. 

 

 She was bigger than life!!  She was bigger than my words 

 

 Team St. Pierre-Ford is about making the most out of every moment. 

 

 A couple of years after I met Hillary, there was a video that went viral on the Internet … it was 

called “The Last Lecture” … by Randy Pausch, a Professor at Carnegie Mellon.  Remember it?  

He had inoperable cancer & was saying good-bye to his students. 

 

 He started his lecture talking about his childhood.  He realized as he went through family pictures, 

there wasn’t a single one of him as a kid when he wasn’t smiling.  Does that sound like someone 

we all know?  Have you ever seen a picture of Hillary when she wasn’t smiling? 

 

 And oh how she could smile.  When I 1st started hanging around Hillary, her mother Nancy, like all 

“she bears”, was protective of her cubs.  She wondered why was an old white haired guy was 

hanging around 1 of her beautiful daughters? 

 

 She even made me give her references!! 

 

 I assured her my intentions were honorable … however, today I will admit that Hillary’s smile had 

me from the 1st.  So Nancy was in fact, wise to question my motives. 

 

 However, it took only 1 look at Hillary’s husband Jon to keep me on the straight & narrow.  Man, 

that guy is BIG!! 

 

 But your troubles aren’t over yet Nancy.  You do have another beautiful daughter. 

 

 Hillary packed a lifetime of accomplishments into 29 short years!!  Yet she never stopped living 

with gusto … right up to the end. 

 

 She gave new meaning to an old biker saying about living life … Ride it like you stole it. 

 

 And she did it ‘til the end.   

 

 She encouraged us to live each day because you never know.  I was again reminded of that 

lesson last night.  After the Visiting hours at the Funeral Home, I drove to Dartmouth Hitchcock to 

visit a dear family friend.  When I got there, I learned I was 10 minutes too late.  He died just 

before I arrived. 

 

 Live as if there were no tomorrows. 

 

 She was bigger than life!!  She was bigger than my words 

 

 Team St. Pierre-Ford is about caring for one another no matter what the challenges.  

 

 There aren’t many people whom I truly admire.  That is saved for a select few. 

 

 Today, there is such a person among us - a co-captain of Team St. Pierre-Ford … Hillary’s 

husband Jon.   

 

 Over the last 6 years … when medical bills outstripped insurance … when the woman he loved 

couldn’t do the things she signed up for because she was fighting for her life … Jon always had 

Hillary’s back. 

 

 He stuck by her in his quiet, unassuming way … never complaining.  He would step in to pick up 

her share of the load when it was necessary … at times being primary care giver to both Hillary & 

to Xander. 

 

 Conversely, when Jon struggled with his own serious medical issues, Hillary, in spite of being sick 

herself, stepped forward to care for Jon. 

 

 How many of us can honestly say we’ve been as self-less as Jon & Hillary? 

 

 They are bigger than life!!  They are bigger than my words. 

 

 Team St. Pierre-Ford is about teaching … & making a difference. 

 

 In 2007, Hillary suffered a major setback & we almost lost her.  She was back in the hospital for 

an extended stay when her computer crashed.  And anyone who knows Hillary …knows her 

computer was an extension of her. 

 

 I had an old laptop I agreed to give to her, but there were conditions.  She had to promise to do 

something for someone else.  She gave me one of those beautiful smiles & said no problem. 

 

 After thinking about it, she called to tell me she was wanted to chronicle her battle with cancer by 

starting a Blog.  I didn’t know how to spell Blog!!  And I never imagined what that would grow into. 

 

 She chronicled her battle so well, that her site was subsequently listed by The American Cancer 

Society as one of The Top Ten patient-written cancer resources.  And along the way, she helped 

us understand the challenges patients face in the American health care system.   

 

 And throughout the last 6 years … Vic kept us abreast of the situation.  In the process, we came 

to recognize the total love of family that he & Nancy have.  They taught us to focus on the positive 

… even during the darkest hours. 

 

 No matter what was going on with his family, whenever I talked with Vic … his 1st questions were 

about me & others.  Along the way, he showed us that life, even when it isn’t easy, can be lived 

with kindness & generosity. 

 

 While I wasn’t able to be with her at the end … I took inspiration from Vic & Nancy who set the 

standard in courage for us all.  I learned sometimes we have to accept things we cannot change. 

 

 Throughout the last 5+ years I’ve known this family, Team St. Pierre-Ford has had a consistent 

theme … their quiet dignity made me want to be a better person. 

 

 They are bigger than life!!  They are bigger than my words. 

 

 My friend Dianne, also from Keene State, wrote that Hillary may have lost this war with cancer, but 

she surely did win a lot of the battles along the way.  While she is no longer here with us in body, 

you can still see her in the things she left behind.  You can see her in her biggest legacy … her 

wonderful son Xander … who gave me the gift of Hillary. 

 

 Xander … I want to thank you from the bottom of my heart for the gift you gave me by introducing 

me to your family.  Thank you for teaching me to catch frogs & I hope you will come up to VT this 

summer & give me another lesson & maybe we can go for a ride on the old ’48 Harley. 

 

 Heather … thank you for your bravery … for enduring the pain of being a bone marrow donor … & 

for your hours sitting in countless hospital rooms with your sister.  You are truly a gift girl!! 

 

 Patrick … thank you for also being there through this struggle & for supporting your sister.  You 

meant a lot to her. 

 

 Jon … thank you for your strength & unwavering support for our girl.  You have been there for 

Hillary … quietly & without fanfare.  I admire you for that.  It was not an easy journey & there were 

no road maps to guide you.  Now you face new challenges.  It is up to you to teach the lessons 

Hillary would have taught Xander … to ensure he grows into a responsible, strong young man. 

 

 Vic & Nancy … thank you for adopting me into your family … & for sharing your gut wrenching 

journey.  Thank you for your caring & wisdom that helped us all through this journey.  You have 

set the standard for courage … class … dignity … & love. 

 

 Team St. Pierre-Ford … you have had a HUGE impact on MANY people's lives. 

 

 You are bigger than life!!  You are bigger than my words

 

 While Hillary is gone from us physically, her spirit will always be here.  My friend Dianne said it 

best when she wrote about a country song … a father calling home when his son, who missed 

him, asked … Daddy, when are you coming home?  He said the first thing that came to his mind: 

I'm already there … 

Take a look around … 

I'm the sunshine in your hair … 

I'm the shadow on the ground … 

I'm the whisper in the wind … 

I'm your imaginary friend … 

And I know I'm in your prayers … 

I'm already there. 

 

 To Hillary … I say thanks for touching my heart in a very unique way … thank you for making me 

want to be a better person.  Thank you for making a difference … & for daring to dream big. 

 

 In closing … where we once hoped Hillary would conquer this ugly disease, let’s hope that it will 

be cured before more die.  Let’s hope that Vic, Nancy, Heather, Patrick, Jon & Xander will find the 

strength to deal with the days ahead.  Let’s hope that this family, whom we've all come to love, will 

find peace.  And let’s hope that we see Xander grow up in the image of his mother & father. 

 

 When people who work for me come up with a suggestion … I frequently ask So What?  So what 

will be different?  So what will be the outcome? 

 

 As we leave here today, I ask each of you to take a moment & answer so what? 

 

 So what are you going to do, to keep Hillary’s legacy & Team St. Pierre-Ford alive? 

 

 Will you volunteer to coach youth soccer? 

 

 Will you listen to your kids a little more? 

 

 Will you take care of your spouse or significant other even when you don’t feel well? 

 

 Will you speak out against injustice & fight for what you believe in? 

 

 Will you comfort a stranger? 

 

 Will you find ways to make a difference? 

 

 Will you find ways every day to leave things a little better than you found them? 

 

 I hope you do. 

 

 Let’s keep Team St. Pierre-Ford & Hillary’s legacy alive 

 

 Thank you. 

Politics and Hillary

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Awaiting Health Law’s Prognosis
By REED ABELSON
Published: February 1, 2011
 
 
 With a court decision on Monday declaring the health care law unconstitutional and Republicans intent on repealing at least parts of it, thousands of Americans with major illnesses are facing the renewed prospect of losing their health insurance coverage. 

 
Herb Swanson for The New York Times
Hillary St. Pierre, who has Hodgkin’s lymphoma, nearly ran out of insurance because of lifetime limits. 
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Leah Nash for The New York Times
Last year, the bill was $800,000 for the clotting factor medicine that Alex Ell, a 22-year-old with hemophilia, needs.
The legislation put an end to lifetime limits on coverage for the first time, erasing the financial burdens, including personal bankruptcy, that had affected many ailing Americans. 

For example, Hillary St. Pierre, a 28-year-old former registered nurse who has Hodgkin’s lymphoma, had expected to reach her insurance plan’s $2 million limit this year. Under the new law, the cap was eliminated when the policy she gets through her husband’s employer was renewed this year. 

Ms. St. Pierre, who has already come close once before to losing her coverage because she had reached the plan’s maximum, says she does not know what she will do if the cap is reinstated. “I will be forced to stop treatment or to alter my treatment,” Ms. St. Pierre, who lives in Charlestown, N.H., with her husband and son, said in an e-mail. “I will find a way to continue and survive, but who is going to pay?” 

As judges and lawmakers debate the fate of the new health care law, patients like Ms. St. Pierre or Alex Ell, a 22-year-old with hemophilia who lives in Portland, Ore., fear losing one of the law’s key protections. Like Ms. St. Pierre, Mr. Ell expected to reach the limits of his coverage this year if the law had not passed. In 2010, the bill for the clotting factor medicine he needs was $800,000, and his policy has a $1.5 million cap. “It is a close call,” he said. 

Exactly what will happen to the law’s specific provisions that prevent insurers from imposing lifetime limits and require them to phase out the annual limits now in place is unclear. While even Republicans concede that a full repeal is unlikely, Congress could strip certain elements of the legislation, like this one. As challenges to the law move through the courts, patients who have felt an immediate impact now confront added uncertainty. 

“We’ve got to protect people from catastrophic health problems,” said Ron Pollack, the executive director of Families USA, a consumer advocacy group that favored the law’s passage. “We don’t want people bankrupted.” 

Protecting people from facing these extremes is one of the main goals of the law, according to its proponents. 

Asked about the effect of the law on those who had encountered an insurance ceiling, Kathleen Sebelius, the health secretary, said in a statement: “The Affordable Care Act is freeing Americans from worrying about having their insurance benefits run out when they need them the most.” 

Before the law was passed, an estimated 20,000 insured Americans reached the lifetime limits of their coverage each year. Decades old, these restrictions were put in place when both medical care and health insurance were much less expensive than they are today, said Tom Wildsmith, an official with the American Academy of Actuaries. 

In recent years, many employers, if they still had caps, set them fairly high, so that it was rare for someone to exceed the benefits unless they were seriously ill and required expensive care. 

“This is the kind of thing that grabs a cancer survivor who has had several operations,” said Gary Claxton, an executive with the Kaiser Family Foundation, which studies employer coverage. Only the very sick were affected. “People don’t voluntarily use this level of services,” he said. 

Ms. St. Pierre nearly lost her insurance in 2008. After her first bone marrow transplant failed, she realized the coverage from her husband’s employer would run out before she could receive another transplant. 

She remembers reviewing her options and looking into treatments that would be less expensive. She enrolled in a clinical trial to test an unproved form of chemotherapy, for example, because it was free. She considered divorcing her husband, a move that could qualify her for Medicaid, or moving to Massachusetts, where she thought she might be able to afford and qualify for a policy. She has written about her experiences on her blog, called BaldiesBlog. 

But she was spared from making those decisions when her husband’s company was acquired, and she was able to enroll in a new health plan. “Luckily, the cap started over,” she said. 

Ms. St. Pierre also now qualifies for Medicare, the federal health insurance program, because she is disabled, but her husband’s plan remains her primary source of insurance. Medicare would still leave her with significant medical bills if she lost her husband’s coverage because she has no supplemental insurance. 

Without the lifetime cap, Ms. St. Pierre says she can now focus on what treatment makes the most sense rather than gamble that the most aggressive care will cure her and allow her to escape the maximum limits on coverage. “It opens up all sorts of options,” she said, including viewing her cancer as a chronic condition that she can afford to treat for many years. 

Cancer patients like Ms. St. Pierre who are concerned about running out of coverage often try to tailor their treatments to see if they can avoid hitting their lifetime caps, said Stephen Finan, senior director of policy at the American Cancer Society. “People have to think about what’s their strategy,” he said. 

And while Ms. St. Pierre, who has worked with the cancer society, says she knows she is likely to be able to continue to receive some treatment without insurance, she also knows that it is not likely to be the optimal care. The same is true for any patient who runs out of coverage, Mr. Finan said. “You may well continue to get care, but the quality of care is markedly lower,” he said. 

The last time Mr. Ell neared the maximum on his parents’ policies, he had only $77,000 in remaining coverage — about a month’s worth of his clotting medicine. He had been able to switch plans offered by his parents’ employers. He works part time and is not eligible for insurance from his employer. 

Among employers, the feelings are mixed about whether the limits should be eliminated, said Andrew Webber, who is the president of the National Business Coalition on Health. One of the coalition’s members, the Midwest Business Group on Health, recently conducted a survey of opinions by employers. About a quarter of those surveyed wanted to repeal the new law’s ban on lifetime and annual limits to coverage. While about half wanted to keep the provisions, some employers object on the grounds that they do not want the government to dictate what benefits they offer their workers. “Employers, for so many years, have had so much flexibility to design and change their policies from year to year,” Mr. Webber said, and the new law changes that. 

The expense of doing away with lifetime limits is fairly modest, said Mr. Wildsmith, the actuary. If a plan currently has a $1 million limit, eliminating it would add only 1 percent to the cost of the premium, he said. Many employers have much higher caps, making it even less expensive to eliminate them. 

While proponents of the law favor the elimination of the caps, some Republicans also think health coverage should no longer be subject to caps on a yearly or annual basis. The plan being proposed by the House Republicans “banned annual and lifetime limits and lowered premiums for millions of people,” said a spokeswoman for the House Ways and Means Committee. 

Ms. St. Pierre says she knows she will want to continue her treatment, regardless of whether she has private coverage, but she also knows that someone will have to pay the bill. “Where the problem lies is who is going to pay for that,” she said. “Will they take my house or car?” 


A version of this article appeared in print on February 2, 2011, on page B1 of the New York edition.