Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Tuesday, February 14, 2012

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


Monday, February 13, 2012

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
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. 
Multimedia Interactive Feature 
The Health Care Law: The Growing Legal and Political OppositionDocument: Judge Vinson’s Ruling 
States Diverge on How to Deal With Health Care Ruling (February 2, 2011) 
Reporter’s Notebook: Tea Party Shadows Health Care Ruling (February 2, 2011) 
Enlarge This Image
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.

Heather's (sister) Eulogy to Hillary

The last speech I gave for Hillary was at her and Jon’s wedding in 2004. Unfortunately there were more ups and downs during their life together than we expected at that time.

I was with Hillary since before she was born. We have a connection that spanned a lifetime and goes beyond her death.

Hillary lived a remarkable life. She lived a life of caring, compassion and generosity. She loved openly and deeply. I was with her for all of the most important times, her birth, childhood, holidays, vacations, meeting (and introducing her to) her husband, Jon, their wedding, the birth of her son, Xander.

When Hillary became sick we thought it would be short term. But it turned out it wasn’t. Xander made it all worthwhile. She was always thinking of him during her two bone marrow transplants, treatments, and multiple recurrences. She fought hard for her life as she travelled to Dartmouth in Lebanon, Dana Farber in Boston, and Columbia Presbyterian in NYC to find a cure for her cancer.

While Hillary was fighting for her life she was also fighting for the lives of other patients. She realized quickly that there are flaws in our healthcare system. There was no system in place for open communication between her many doctors. She constantly had to worry that her insurance was going to reject her necessary treatment. Or worse, cap her treatment costs at 2 million dollars, a dollar amount that she reached over 3 years ago. Hillary believed in a fundamental right to life regardless of a patient’s ability to pay. She advocated for support of SB 158 to solve NH uncompensated care problems. She believed that this bill could not only reform the current health care system, but revolutionize it. She was passionate about her beliefs. Please don’t let them die with her. Advocate for patient rights, participate in Relay for Life, donate blood, and sign up to be a bone marrow donor. Someone else did and they saved my sisters life, if only for a little while.

Saturday, February 11, 2012

Update from Vic & family

Hi too all
Yes it's 3:00 when I am writing again. I am tired from standing at the wake from 1:00 to 9:30. But all the support, many hugs, and positive people that shared their time today have all humbled me. What a small caring world we have around us. The moon shining in so bright has given a clear path to the computer to share some thoughts

I was stunned at how many players from other teams came to tell us their favorite stories of her as a competitor but how she could be a friend also.

I saw her her former coach who is also a twin give me some of the perspectives on both Heather and Hillary.

I watched as over 600 people flooded the wake, some of the wait times being nearly 2 hours!! I hope we didn't offend people by being so slow. Those people who didn't stay-- I don't blame you- I probably would have left and said some prayers. I could definitely feel your love. 

I was very happy that the whole mood was positive, a little crying but more amazement that she could accomplish so much in so many short years. It was heart wrenching.

For the several cancer survivors that she helped. you spoke with elegance on how she was able to help. For the several that have active cancer, especially the ones that Hillary would spread hope that you can beat it, I pray that you can keep her faith.

Father Stan's comments hit me hard-- When I was sick she inspired me. After I was better she motivated me. If you don't know Father Stan he is the most active Priest I have ever met. He is 86 years old. If your a star wars fan he reminds me of Yoda. Wise man he is. The force is strong in him. He will say the funeral today. 

The church only holds about 250 people. We are now expecting 500+. I sit here tonight and say what are we going to do? Well we will send them to the reception hall or the Hope Hill cemetery and try to catch up with them there. We can only grieve from 1:00 to maybe 2:30. Then we are change from grieving to, how she touched us and how she has changed us. If it was Hillary she would be planning something new to make an impact.

I was told today about an article in the Washington Post-- How would the Republicans help Hillary St Pierre-- I made me remember the day we were going to Dana Farber in Boston for treatment but she had to stop in Concord to testify in front of the state senate. She did not have standing so she waited a long time to speak. Many dignitaries spoke to the bill. But when Hillary spoke every one in the room stopped and really listened. She had facts, she verbalized perfectly, she was just dazzling. I watched as a bill that faced certain death was transformed and passed because of her. She could personalize her issues but not for pity but real life effectiveness.   I was so inspired that day. I remembered the the serenity prayer and thought how do you know the difference of the things you can't change?  She was taking them on and winning!

Well enough for today. I should rest. I had a wonderful wake -- if that is possible. I have over 1000 emails to respond too. I hope to get to all of them. I do about 3 at a time and have to stop. My heart has been touched by all of you.

Thanks for your Prayers and support-- and way too many cookies. 

Vic, Nancy, Grace and Patrick, Allen, Pierce, Preston,Heather, Jon Xander and God bless you Hillary 

Thursday, February 9, 2012

Hillary's Obituary

Hi too all

Here is a small amount of how Hillary Lived. Apparently I did not hear all The Stories. I have heard several new ones from her friends
 this week!  We are having a reception after the funeral and burial on Saturday at the Claremont Senior Center. Please bring your best memories as we want to leave with the best memories of how she was able to do so much in such a short time.

Thank you for the outpouring of support, prayers, novenas, masses and so much more. We have such a support system. we know That Hillary touched the lives of so many people. Yesterday she had 5000 visitors to her blog! And I don't blog!You all have touched our lives more than we can ever say.

Tuesday, February 7, 2012

Celebrating Hillary's Life

Calling Hours
Feb. 10 (Friday), 2012
2:00 pm - 4:00 pm @ Stringers
6:00 pm - 8:00 pm @ Stringers
Claremont, NH

Feb. 11 (Saturday), 2012
1:00 pm @ Saint Joseph Parish

Update from Vic & family

Hi too all 
Hillary has passed away tonight (Feb 6, 2012) with her twin sister Heather, brother Patrick and his wife Grace, mother Nancy and father Vic all at her bedside. Her husband Jon Ford and her son "Xander" had gone back home so X could play in his last game of the season. We had kidded, that Hillary would probably be there to see it also. It was a 7:30 pm game and she left us at 6:50 pm.

Hillary hodgekins disease had been active for 6 years. She had an extremely agressive strain that would mutate and render that type of chemo useless. She had survived 2 bone marrow transplants, multiple chemo treatments, radiation and trial drugs. She allways had a positive outlook.

Tonight we were listening to the music on her blog. She always wanted her music to tell her story. When "don't worry be happy"

Friday, February 3, 2012

Hill's Update

I've lost so muh time being in the hospital.
 My trusty blakberry doesn't have a rise and shine feature for its screen.
You figure with thousand of apps created over the past year, they'd do something for hospital induced disorentation, but NOOOOOO.
Columbia-Pres has managed to block outgoing emails, making it impossible to communicate via my smart phone (aka blackberry curve). This is something they've accomplished since 2004 when I was here as a student.
They should be very, very proud. I haven't been able to communicate my status, but I keep trying!!
I keep writing, snippets, unsure of what is going through.
Long story very short: This all started about Dec. 11. I received my last dose of SGN-35 in NYC at NYU's Langone Medical Center with what appeared to be good results, waited the allotted 3 weeks, then took it again at my home base hospital in Lebanon, NH with my go-to heme-team.
I ran to Dr. O and Ellen, NP in NYC, again, for suspected graft vs. host of the bowel on Dec. 22 after I was sitting on the toilet day-in-and-day-out, feeling miserable, unable to eat, hypovolemic, passing out, being chased down and caught to save my life.
Very dangerous.
I was advised to see Dr. Edwin Alyea, my Dana Farber Doc, The Head of Transplant at Dana Farber, super-genius extrodinaire, to guide my gvhd are.
He gave it to me. It was his problem.
But the holidays, conferences, life, dont wait for anything, including my life threatening disease.
I'd been put on 60 mg of prednisone, a standard dose of 1mg/1kg for GVHD of the bowel which was confirmed by colonoscopy/endoscopy.
When that didn't work I was put on enterocort/budenoside, another 9 mg daily, to target the specific area of the colon I had inflammed.
Nothing worked.
Dr. A had me take immodium around he clock, and i began to eat again. I  was still in a lot of pain, but felt like like I was coming around.
However, with my body exhausted, no reseverves to survive.
 I started to lose consciousness.
I started to wonder if this is what it felt like to die a slow, painful death.
I'd stand and personalize it until one day X chased after me into the bathroom, which he'd seen  J do a hundred times, and asked, "Now, was that an anyuerysm or an arrythmia?"
"What the hell?"
I thoiught to myself, awakening from my near-syncopal episode.
After getting over the shock, ""Where'd you hear THAT?" I thouhgt I'd ask the question. They were finally beoming too much. It'd finally become too much on my little man.
X had been havng a very strong reaction for a long time. My hearts breaksfor him.
I;m so happ ywe've instilled in him muliple......   and I fell asleep.

i think i was going to say a strong sense of empathy? or at least a good vocab?

whatever, today i am improving. Dad, Denis Boivin, a lifelong friend and trooper and i ran to see dr. o at his new office on 60th st. and madison/fifth Ave. right accross from the central park zoo.

Ellen came in, took one look at me and confirms my fears: i need to be admitted, pronto. she began working on the admission.

Thats when i passed out, flaccid, in my dad's arms: no 1500 pages of records from the past 6.5 yrs of trtmnt. i bought myself a full work up, at least, that's what i asked for... boo-ra.

my liver was failing, my kidnys were failing, but i was alive!
ive worried since then if i was going to die. i've floated in and out of consciousness, but i'm going to make it, hopefully for everyone, if not, for my family and God to finish God's work.

Chemo may be revlomid or a study drug starting ASAP.
Thats what's up. That was weeks ago.
i just wasnted to be taken care of, and here i am. That was Jan. 24th. Today is Feb.3.

Hillary Update from Vic

there is a miracle called friendship that dwells within the heart.

and you don't know how it happens or when it gets its start...

but the happiness its brings you always gives a special lift ,

then you realize that friendship is gods precious gift.

hi all

I have been reading and praying a lot this week. Hillary had told me ten years ago that I should get out of Charlestown and sees the cities. I was perfectly happy being a country bumpkin. So she went to New York to spread her wings and learn about how other people live. Well this week I found out how many good friends we all have. I think we were visited by all races and nationalities that had 1 thing in common. They all care deeply about Hillary.

I don't know where to start this update, I can't sugar coat it anymore. We have seen a down turn in her health since December 11th when she started having bowel trouble. We went to her specialist in NY last week and we left his office in an ambulance. We have been at Columbia Presbyterian Hospital for the last 8 days. Her condition is stable at best but she is very week. Her mind is still pretty sharp but her body is wearing out. Several issues have her down.

1st the Hodgkins disease just keeps finding away to mutate and come back after every type of chemo they have given. Even after radiation the location just moved and came back. Then we tried the 2 different types of bone marrow transplants. Well the second one created a complication call Graff vs Host disease. (GVHD) That had caused problems with her eyes and lungs. Now it has taken over the kidney. We are testing to see if that is also affecting the liver. Meanwhile the cancer is back again for I believe the 14th time. Hillary's body has found away to beat 13 types of Chemo and drug treatments. Her body has found away to fight with her graffs cells too. How could a person so loving and friendly fight so hard. We keep telling her to fight this sickness but her body keeps fighting the cures!!

I have a lot of things to tell you all about. How on the floor with 50+ beds everyone already knows Hillary as a celebrity. I watched her tonight make a doctor feel special. I watched as nurses are just amazed at what power she has to make friends and get them to open up about their lives not hers. I watched other cancer patience called in their Rabbi's, Greek orthodox priests after she had the Catholic Priest come in to pray with her and give her the Sacrament of the sick. I watched as many care givers come in and are inspired by her will, her personality and her positive attitude. We have been talking a lot about dying this week. We expect it is inevitable. But she is determined to live life the best way she can right to the last breathe. We have been here before and she has come back to prove us wrong. I hope and Pray that she can come up with another miracle. If anybody can it is Hillary.

Please keep us in your prayers. Please send Hillary an email note "Hillary St. Pierre" I don't think she has any idea of how many people she has touched in a short lifetime

Thank you all for being such good friends

Vic, Nancy, Patrick and Grace, Preston, Pierce Heather and Allen, Xander, Jon and especially for Hillary

Wednesday, February 1, 2012

Uptown Girl

This is Hillary, reporting from 160th St. St; The Munstein Buiding at Columbia Presbytarian Hospital, uptown Manhattan.
This is also the region known as Morningside Heights where, when I was in college, I researched the dichotomy of care received between the ten block walk from where I'm currently housed and  Bronx-Lebanon Hospital.
I'm happy to be on the south side, the good side.
I was admitted a week ago yesterday after a routine clinic heck up with Dr. O'Connor (or so I thought) at his brand new office on 60th st, 108 blocks away, where i promprly had a "near syncopal " episode, and got myself a bed here.
I'm not sure what has been getting onto the blog.
My phone works sometimes; others it doesn't.
Passing out, going flaccid in my father's arms wasn't anything either one of us was prepared for. It bought me a ticket in the ambulance here, which I desperately needed.
The week has been testing and strengthening.
My kidney stent was replaced at DHMC, but had all ready begun to fail due to the extreme dehrydration from the round-the-clock diarrhea.
Sun. before we hightailed it to NYC I noticed severe swelling in my cankles. Can't even recognize them.
By Tues the swelling had spread to my stomach.
Weds. this was determined to be lymphadema or my cancerous lymph nodes swelling and draining with no where to go.
Along with my kidneys failing, so isn't my liver, which controls clotting in the bodu; however, it's imperative to know if i have gvhd of the liver. This will effect the chemotherapy regimen.
Revlomid, which I have on a standby, increases graft vs. host issues; the other one does not.
I feel the sickest I've been in a long time, maybe ever. I am a two person assst to the bathroom, but I am not longer losing consciousness!!
My clotting times and kidneys are the worst they've ever been. I really have begun to wonder if I'll die from this.
I've promised to keep fighting for him forever, and that's what I plan on the doing.
Last night, the nurses gave me fresh frozen plasma, a blog product, to assist in clotting, in prepaation for my biopsy.
 This am my PT/INR was 1.2 but my hemoglobin had fallen 2 pts to 8, probably dilutaional from adding fluids, but I can't risk bleeding.
I'm getting a CT of my stomach to see if I'm bleeding there; pray something will go my way SOON. There are so many options!