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