History

Monday, December 22, 2008 8:02 AM CST

DEAR HANNAH MOLLIE
DEC 22ND 2008 THIS WOULD MARK YOUR 5TH BIRTHDAY. I HAVE NOT WRITTEN SINCE YOUR LAST BIRTHDAY , BUT I THINK OF YOU ALWAYS. I WONDER ALL THE THINGS THAT MIGHT HAVE BEEN. WHAT YOU WOULD BE DOING AND ALL THE GREAT MOMENTS WE WOULD SHARE. I HAVE TO PROTECT MYSELF FROM THE PAIN OF REALIZING THAT IT WILL NOT BE. THE PAIN OF KNOWING YOU ARE NOT HERE AND THE REALITY OF WHAT TRULY HAPPENED AND ALL THAT YOU WERE FORCED TO ENDURE IN SUCH A SHORT TIME. I WISH WITH ALL MY HEART YOU WERE HERE AND I COULD HOLD YOU AND SING TO YOU ONCE MORE. YOU MADE ME REALIZE WHAT A PRESCIOUS GIFT YOU WERE AND I FEEL FOREVER SO PROUD AND GREATFUL FOR YOU AND ALL OF YOUR GIFTS. YOU SHOWED ME THE TRUE MEANING OF LOVE AND TAUGHT ME SO MANY LESSONS.. YOUR MOM MISSES YOU SO MUCH AND IT HAS BEEN VERY HARD THESE PAST FEW YEARS WITHOUT YOU. OUR LIVES HAVE BEEN SO DIFFERENT WITHOUT YOU IN IT . OUR FAMILY IS JUST NOT COMPLETE WITHOUT YOU. NOBODY WILL EVER REPLACE YOU HANNAH. PLEASE KNOW THAT WE MISS YOU AND LOVE YOU. YOU ARE ALWAYS RIGHT THERE IN MY HEART AND IN MY THOUGHTS. I STILL SHOW YOU ALL THE TIME AND YOU HAVE MADE ME A PROUD FATHER. YOU INSPIRE ME WHEN I THINK I CANT OR WHEN I FEEL BAD.. I THINK OF YOU AND ALL YOU WERE FORCED TO DEAL WITH. ITS SO NOT FAIR THAT YOU HAD TO ENDURE THIS INSIDIOUS DISEASE CALLED NIEMANN PICK
HAPPY BIRTHDAY HANNAH. MY HEART BREAKS AND WE MISS YOU SO MUCH MORE THAN ANY WORDS COULD EVER SAY. LOVE ALWAYS MOMMY AND DADDY
IF ANYONE EVER WANTS TO MAKE A CONTRIBUTION
IN MEMORY OF HANNAH
HANNAH MOLLIE STIMELL FOUNDATION
43 HONEYSUCKLE CT
MELVILLE NY 11747
THANKS TO ALL AND HAPPY HOLIDAYS!!!

Saturday, December 22, 2007 6:46 AM CST

DEC 22ND

HAPPY BIRTHDAY HANNAH MOLLIE WE LOVE AND MISS YOU WITH ALL OUR HEARTS.
!!! DEC 22ND WHAT A DAY FILLED WITH SO MUCH JOY AND PRIDE! I STILL CAN'T BELIEVE YOU ARE NOT HERE, ITS JUST A BAD NIGHTMARE!! YOU WILL ALWAYS BE OUR PRIDE AND JOY. I PROMISE THAT I CARRY YOU WITH ME EVERYWHERE I GO AND I SHARE YOU WITH ALL I MEET. PLEASE KNOW THAT WE ARE THINKING OF YOU MORE THAN EVER AND HOW WE MISS YOU. I MISS EVERYTHING ABOUT YOU , ESPECIALLY SINGING YOU GOODNIGHT AND HOW YOU LOOKED AT ME WITH THOSE MESMORIZING EYES. HANNAH YOU NEVER COMPLAINED AND YOU WERE THE STRONGEST LITTLE FIGHTER I EVER DID SEE. YOU TAUGHT ME MANY LESSONS BUT AT A TREMENDOUS COST . I ALWAYS WONDER WHAT COULD HAVE BEEN?. I DONT KNOW WHAT ELSE TO SAY EXCEPT THAT WE LOVE YOU AND MISS YOU MORE THAN IT'S POSSIBLE TO EXPLAIN . HAPPY BIRTHDAY LOVE ALWAYS MOMMY AND DADDY... I END WITH MY SONG THAT I ALWAYS SUNG TO YOU
HANNAH MOLLIE I LOVE YOUOOOO , HANNAH MOLLIE I LOVE YOUOOO HANNAH MOLLIE I LOVE YOUOOO HANNAH MOLLIE YOU KNOW I DOOOOOH. HANNAH MOLLIE I LOVE YOUOOO, HANNAH MOLLIE YOU KNOW ITS TRUOOH HANNAH MOLLIE I LOVE YOU HANNAH MOLLIE ALL DAY THROUGHOOO . LALALALA LA LA LALAL LA LA LA LALALALA LA LA LA .I HOPE YOU HEAR ME MY HEART JUST BREAKS. THANKS FOR ALL YOUR NOTES WE LOVE TO HEAR FROM YOU .

Monday, November 5, 2007 8:05 AM CST

i write this journal with great sadness on the passing of anna phillips. anna also had niemann pick type a and had a stem cell transplant in minnesota not long after hannah passed away. our hearts break for che and her family. che was the most unbelievable mommy showing incredible unconditional love, as she took care of anna while juggling going to school as a single parent. i don't have to tell you what an arduos task that is in normal circumstances, but to do this with a child with these type of needs is nothing short of miraculous.
when i first spoke to che almost 3 years ago she really didnt think she could do it and i told her that she could and to take it 1 day at a time. the words seem trite but they are so true. . we know that che's pain right now is unbearable. we also know there is a part of both anna and che that are free from pain as well.
che has been so remarkable and inspiring and anna will never be forgotten. together we will all make a difference in the fight against niemann pick type a and create awareness to let people know that this horrific disease does exist.
i hope the days ahead will get easier for che and her entire family . please know that our familys heart breaks for you. please try and find some peace in the days ahead and remember anna will always be in your heart just as hannah is in ours!
love the stimells

Saturday, September 22, 2007 9:23 PM CDT

hi to everyone and to all our jewish friends we wish you a happy and healthy new year!
we recently just completed a wonderful weekend at mohegan sun where our good friend rob cardini once again
raised $ for hannahs foundation. he threw a golf event and dinner at mohegan sun. it was a great day and weekend
rob and all his friends were great. his kindness and generosity is overwhelming and inspirational. we are so lucky to have rob,his family and friends by our side as we move forward in our mission to keep hannahs memory alive and make a difference as i promised her! she is and will always MAKE A DIFFERENCE!! i am always taking out photos and showing them to people i am still a proud papa and believe by sharing hannah she is still touching and affecting others. i am her voice...

jill and i were also extremely lucky to have been involved with eric trumps 1st annual golf outing at trump national. eric is a great young man (donalds youngest son)
he just recently started a foundation to help children and the proceeds were going to st judes. all of the trump family was so very nice to us. i had the opportunity to speak in front of everyone and shared my story of hannah as i had brought a special u.states american flag signed yes we believe in miracles signed by the entire 1980 olympic gold medal hockey team. this raised over $10,000
and we were so happy.

on a sad note joyce from our building in long beach who is like a 2nd mom to us lost her grandson in a car accident. we feel her sadness and pain. joyce is such a special person who has always been there for us AND WE WILL BE THERE FOR HER!.

also our friends heidi and scotts son corie was in
a car accident and has been in the hospital unable to walk or move from his neck down. he is a great young man 13 years old. he has a great outlook. please think positively for him. his family is like my family and our hearts break for them. he is a big yankees fan so hopefully we can win a championship and bring a big smile to his face!!!

lastly my store had a small fire last week. it was a close call i think we were hit by lightening? we did lose some stuff but in the scheme of things we were lucky...

well we try and stay positive but life as we all know is filled with challenges.

REMEMBER WE LOVE TO SEE THAT YOU CHECK IN
AND YOUR MESSAGES ARE READ AND APPRECIATED. TO KNOW THAT YOU STILL LOOK AT OUR SPECIAL LITTLE GIRL MEANS SO MUCH TO BOTH JILL AND I. HANNAH IS SO DEEPLY MISSED . I ALWAYS WONDER WHAT HANNAH WOULD BE DOING TODAY?. THERE WILL ALWAYS BE A VOID IN OUR LIVES WITHOUT HER. HANNAH YOU KNOW I CARRY YOU WITH ME ALWAYS.. THANKS AGAIN FOR READING-SCOTT

Tuesday, July 31, 2007 9:09 AM CDT

well i figured it was time to write a new journal.
we were very sad to hear of sammys passing he was a little boy from australia who fought this insidious disease. our hearts are with his parents as they go through this very difficult time. we know all to well the pain they are feeling.

on another sad note jills grandfather papa joe passed away last week. he was a great man who was loved by so many. we will never forget him and his kindness and love for his family.
we also had a small flood last week in our basement but it wasnt too bad... worse things in life as we all know.

on a happy note (maybe not for jill) jill celebrated her 40th birthday on july 27th! she looks great and was told she looks 29!(she really does!) but try telling that to a woman!
we still have plans for an event but again lifes stresses and trying to have a family have been taking up that time.
we are having a great summer spending much time at the beach (long beach)

we also want to send a special thank you to our dear friends steven and debbie baum who for their 40th birthdays had their gifts go to the hannah mollie stimell foundation. we are so honored to have such wonderful caring and giving friends.
well i guess we have about 6 weeks of summer left so enjoy and again please we love to read your letters they still mean so much to know you visit and think of us and hannah.
hannah we think about you everyday and we live our lives differently because of you. we miss you so much, that big smile and those bright brown eyes that spoke to us.
until next update-scott

Thursday, April 19, 2007 11:34 AM CDT

hi everyone. it's been a long time since i have updated. everything is just going along... the world keeps moving... it is terrible the shooting at viginia tech that some insane maniac should take the innocent lives of so many good people who had so much to give to the world!!!

IMPORTANT INFO ON HANNAH FUNDRAISING PLEASE READ!!!!!

i need to praise a new friend of mine Rob Cardini who has a company called Ceci Brothers in Conneticut who has reached out and touched both Jill and myself by taking it upon himself to raise thousands of $$$
by selling $50.00 raffles for the Hannah Mollie Stimell foundation. the drawing will take place in ct sunday at 12pm april 29th with some great prize giveaways!!!
You can call Rob his cell # 203 869 2583 and he can fill out a raffle or 2 for you. His adress is Ceci Bros 740 north street greenwich ct 06831 100 percent goes to hannahs foundation. we are truly blessed to have this great new friend who is so caring and generous. we will make a difference with wonderful people like Rob joining us on our journey!!!

ON A LIGHTER NOTE THANK THE LORD SANJAYA IS GONE FROM AMERICAN IDOL
MY SLEEPER FOR IDOL IS JORDAN SPARKS SHE HAS A GREAT LIGHT AROUND HER AND I BELIEVE SHE WILL DO GOOD FOR THE WORLD!!!
TO ALL OUR SPECIAL CHILDREN OUT THERE ALWAYS HAVE HOPE AND LIVE LIFE 1 DAY AT A TIME . YOUR LOVE, CARING, AND FRIENDSHIP GET US ALL THROUGH THE DAYS. PLEASE WRITE US NOTES AS WE LOVE TO HEAR FROM YOU ALL. THANKS AGAIN -JILL AND SCOTT

Thursday, February 1, 2007 8:37 AM CST

once again hi to all that continue to be drawn to hannah and our family. i am biased but but she has a way of drawing you to her. i always speak of her eyes for that was how she always spoke to me through those wonderous eyes!
friday (tomm will be 2 years since hannah decided it was too much for her little body to take on this earth, i will never ever forget that moment. i hope that my dad is right there with her and she is at peace.
ironically i was at the ronald mcdonald house on long island this past tuesday trying to help them with some fundraising. it was my 1st time back there since hannahs passing. it was the exact same time of year we were there before. its so difficult to see that and the hospital next door. the memories are difficult and the thoughts of our desperation very vivid. in some ways it seems like another life. i never want to forget even the pain as crazy as that sounds?? i wish i could wake up and shake my head as if it were only a bad nightmare.i always thought that this is only stuff you read about and feel bad for someone you hopefully don't know.
on a happier note i just celebrated my 40th b day down in florida with jill. unexpectedly my entire family showed up on the beach wed on my b day to surprise me and our friend betti ann . it was very surreal.
inbetween jill and i got food poisening which was not too fun. on friday jill threw me a small surprise party where another surprise guest flew down to florida for me my good friends andrew and louisa it was really great!
i am very blessed to have people that care and a wonderful wife who is very special, stoic and strong. i dont have to tell you all what i wish for. i just hope they come true
thanks for reading and still writing little notes. they make us feel good to know you are there.. stay warm and enjoy the superbowl.
love-scott

Thursday, December 21, 2006 10:14 PM CST

HAPPY BIRTHDAY DEC 22ND HANNAH. you would be 3!
who knows what you would be doing or saying?? it's so wrong! how something so unbelievably great has turned into something so empty and painful. there are no answers. how jill and i wish you were here, how are lives are so different in a blink of an eye. how the music stopped playing, how the world became darker. i will think of you as i always do harder if possible . i still speak of you and show your photos everyday like a proud papa. we miss you so much!! . my beautiful little girl you will always be that to me. please know that we would have done anything anything to make it all go away. we love you so much . i end in tears and my wish is for you to be at peace. please know we will never stop loving and caring for you never!!! happy birthday !
love mommy and daddy

Wednesday, November 1, 2006 8:50 AM CST

hi to all that still find the urge to peek at hannah and look into her wonderous eyes . of course i look at her site daily. i look because i am drawn to her as i go to start a new day. to say good morning and to let her know she is on my mind and that i will never forget her and all that she has given to me , us and to the world. i know that she will forever have an influence on myself, my wife and our family. i also know that she will have an affect on others as we will spread her love through her charity and our work to help others in the fight against niemann pick.
yesterday (dont know why actually it was on halloween?we finally picked out hannahs headstone.
we waited so long because i think it was so hard for us to do it. we made it very simple and sweet with 2 interlocking hearts at the two top corners. part of my heart will always be right there with her. i miss that beautiful little girl. i miss every last little tiny thing. everything most people take for granted. waking just to see her, touching her and singing to her. feeding her and caring for her. part of life really is just so empty without her. i feel like it was all some cruel game! i havent cried in a while and i find myself breaking down as i write this! i just dont know!!!!!!
its like walking around with a ball and chain, a life sentence , i am just venting a little . i will be fine?
sometimes i just need to write. i know not many read but for the few of you that do thanks! thanks for your notes and for continuing to drop by and remember hannah and see how we are doing. hopefully 1 day we will be blessed for now we try and have hope. take care-scott

Thursday, September 14, 2006 7:39 AM CDT

it is with great sadness that i write to you today on the passing of baby jessica. to the enire tucker family our hearts go out to you.even though it pained me i followed your incredible and difficult journey. your unconditional love and fortitude helped to comfort jessica. we know she and hannah are in a better place and will always be right in the corner of our hearts.we all wanted to believe!! believe that we can conquer this horrific disease they call niemann pick type a. a disease that until our beautiful children were born we never heard of. now we must let the world know that it does exist and that it is evil! i am angry, angry that our children must suffer and angry that the knowledge of this disease is extremely limited. we need to come together and make a difference. unfortunately jill and i know the pain. we know that there are no days or hours. all life stops when you face this. life just becomes a whirlwind. hopefully the tuckers will now have freedom and be able to find some peace. to be free of all the medications, nurses, wires and constraints. it is no way to live for our children or our families. i say that but a big part of me would love to have that back if only to share another moment with my daughter hannah. at times it does get easier ,its just like a cut that starts to heal but then you can nick it and it reopens up . you can always be reminded of it by the scar. in our case its by her photo her smile,a song or a giggle or another little baby with big brown eyes. i constantly wonder, what hannah would be saying or doing now. it is the what could have been that rips at my heart. it was our dreams, her dreams, jessicas dreams and the tuckers and all the rest of the families out there that have had to deal with all of these terrible diseases! i am sorry but i have not vented for a while and yes i am angry! please know that our hearts are heavy for the entire tucker family. may you find solice in the fact that so many care and to know that you are not alone.
love the stimells

Thursday, August 10, 2006 7:48 AM CDT

well its been a long while since i have updated.
i sometimes just don't know what to write(i know many of you would say what is he talking about, he always has something to say. we appreciate allof you that continue to peak at hannah. i look everyday when i wake up, just to see that special(beautiful) little girl who has taken a piece of my heart with her. sometimes i just don't know how jill and i actually function but we must! the world moves onward and so must we i guess?? we have been through a lot in the days since hannah has left us. too much to write. lets just say we continue to be challenged.
hannahs foundation is all set up. again we just havent found the strength yet to do an event. we want it to be done full force and we just arent there yet. we will get there and appreciate everyone who wants to be a part of it.
also please keep your thoughts with jessica and anna and their wonderful families who have had to endure so much. their physical and mental capacity i know are being pushed to the max .
i hope everyone has been enjoying their(hot hot) summer . please continue to write us notes. i really enjoy reading them. to know people still think about hannah warms our hearts. we miss her so much!!!
until the next update be well-scott

Saturday, April 29, 2006 6:13 AM CDT

WELL IT HAS BEEN A VERY LONG WHILE SINCE I HAVE WRITTEN IN. I KNOW ONLY A FEW FAITHFUL STILL CONTINUE TO CHECK IN ON US. JILL AND I ARE TRYING TO KEEP BUSY. WE HAVE NOT YET DECIDED ON A SPECIFIC EVENT FOR HANNAHS FOUNDATION (THE HANNAH MOLLIE STIMELL FOUNDATION)
AS WE ARE STILL TRYING TO GET OUR PERSONAL LIVES TOGETHER IN SEARCH OF TRYING TO HAVE A FAMILY(EASIER SAID THAN DONE FOR US!!! LIFE IS FILLED WITH CHALLENGES AND TESTS. THE DREAMS THAT WE HAVE AND OUR VISIONS ARE BEING REROUTED. I DON'T KNOW IF WE WILL EVER BE ABLE TO ACCEPT THEM, BUT IT SEEMS WE HAVE NO CHOICE BUT TO TRY AND ADAPT. TO HONOR HANNAH WILL MEAN A GREAT DEAL TO US. FOR HER TO MAKE A DIFFERENCE IN THE WORLD CAN BE HER LEGACY ALONG WITH HER BIG BROWN EYES HER BEAUTIFUL SMILE AND HER GIGGLE. WHY YOU
HAD TO GO THROUGH THAT HANNAH I JUST DONT KNOW??, WHY YOU ARE NOT HERE WITH US I STILL CAN'T BELIEVE!
I HOPE THAT THE SPRING WILL BRING SOME POSITIVES FOR US.
I HOPE THAT ALL THE CHILDREN OUT THERE THAT CONTINUE TO STRUGGLE WITH ILLNESS WILL SOMEHOW BE OK.
I ALWAYS SAY IN MY JOURNALS THAT ALL OF YOUR SUPPORT LOVE AND FRIENDSHIP MEAN VERY MUCH TO US. ALSO YOUR NOTES
LET US KNOW YOU STILL CARE AND HAVE NOT FORGOTTEN HANNAH.
IF I DONT UPDATE BY THEN I WISH ALL THE MOTHERS OUT THERE A VERY HAPPY MOTHERS DAY. YOU ALL MEAN SO MUCH.

SCOTT

Sunday, January 29, 2006 8:56 AM CST

HI TO ALL THAT CONTINUE TO FOLLOW OUR FAMILY AND TAKE A PEEK AT HANNAHS BEAUTIFUL FACE AND WONDEROUS EYES. JILL AND I JUST CAME BACK FROM A FEW DAYS IN FLORIDA. WE SPENT MY BIRTHDAY (JAN 24TH) WITH MY MOM, WHO WAS ALSO IN FLORIDA AND MY UNCLE HARRIS. WE HAD A NICE TIME.
I HOPE THAT EVERYONE HAS GOT A CHANCE TO WATCH THE HBO SPECIAL REAL SPORTS WITH BRYANT GUMBEL AS I WAS INTERVIEWED AND ON THE SHOW FOR ABOUT A BIG MINUTE!
THEY CAME OUT TO MY STORE AND INTERVIEWED ME FOR ABOUT
AN HOUR OR MORE. YOU KNOW HOW TV IS THEY TAKE WHAT THEY WANT/NEED. ITS NICE TO FINALLY GET THE RECOGNITION I HAVE WORKED SO HARD FOR IN A FIELD I LOVE.
WELL WE ARE CLOSING IN ON 1 YEAR THAT WE HAVE NOT HAD HANNAH IN OUR PHYSICAL PRESENCE, HOWEVER SHE REMAINS IN OUR HEARTS AND IS A TREMENDOUS INFLUENCE IN OUR THOUGHTS AND HOW WE WILL FOREVER LIVE OUR LIVES. TO SAY WE MISS HER IS TOO CLICHE. I SIMPLY CAN'T BELIEVE FEB 2ND WILL BE ONE YEAR. ITS ALL SO SURREAL LIKE THIS COULDNT REALLY HAPPEN?. I DON'T KNOW WHAT LIFE IS ALL ABOUT SOMETIMES. IT CAN BE REALLY SCARY AND REALLY EMPTY, IT CAN BE FUN AND SIMPLE, I GUESS ITS LIFE AND IT JUST CONTINUES TO MOVE ON. SORRY FOR THE PHILISOPHICAL STUFF BUT I AM JUST PUTTING MY THOUGHTS DOWN.
ANYWAY WE THANK YOU FOR CONTINUING TO LOOK AND READ. YOUR LOVE AND SUPPORT ARE STILL SO IMPORTANT TO US. PLEASE ANY CONTACTS OR IDEAS FOR HANNAHS FOUNDATION ARE VERY MUCH APPRECIATED . WE ARE ALSO NOW ACCEPTING DONATIONS TO THE HANNAH MOLLIE STIMELL FOUNDATION
43 HONEYSUCKLE CT
MELVILLE NY 11747

TO ALL OUR FRIENDS OUT THERE THAT CONTINUE TO FIGHT FOR THEIR CHILDREN WITH GENETIC DISEASES WE THINK ABOUT YOU ALWAYS . STAY STRONG AND FOCUSED.
LOVE JILL AND SCOTT

Thursday, December 22, 2005 8:59 AM CST

HAPPY 2ND BIRTHDAY HANNAH!!!!!!!

HOW WE WISH YOU WERE HERE. THE WORLD IS NOT THE SAME WITHOUT YOU. WE MISS YOU DEEPLY, YOUR SMILE, YOUR GIGGLE,
YOUR BIG WONDERFUL EYES AND YOUR COURAGE. WE MISS SINGING TO YOU AND HOLDING YOU AND TAKING CARE OF YOU. PLEASE NOW TAKE CARE OF US. YOU ARE STILL RIGHT HERE IN OUR HEARTS AND WE WILL ALWAYS CARRY YOU WITHIN US. OUR LIFES AND WORLDS ARE FOREVER CHANGED BY YOU.

IN YOUR MEMORY TODAY WE START THE HANNAH MOLLIE STIMELL FOUNDATION. TOGETHER WITH YOUR STRENGTH AND COURAGE WE CAN ALL COME TOGETHER AND HELP OTHERS.
WE LOVE YOU AND MISS YOU MORE THAN CAN POSSIBLY BE EXPRESSED .
LOVE ALWAYS MOMMY AND DADDY

Wednesday, December 14, 2005 8:35 AM CST

HI TO ALL ANOTHER SMALL UPDATE

WELL TOMORROW IS THE DAY LAST YEAR WE CAME BACK FROM MINESOTTA A YEAR. WE HAD SO MUCH HOPE AND WE WERE SO HAPPY TO BRING HANNAH HOME. THERE ARE MANY TIMES I THINK TO MYSELF WE SHOULD HAVE STAYED. STAYED IN A PLACE WHERE WE FELT SAFER , WHERE EVERYONE KNEW HANNAH SO WELL.
HANNAHS BIRTHDAY IS COMING UP ON DECEMBER 22ND SHE WOULD HAVE BEEN TWO YEARS OLD. WHO KNOWS WHAT SHE WOULD BE DOING? I KNOW SHE WOULD BE BEAUTIFUL AS SHE WILL ALWAYS BE. SWEET AND INNOCENT SHE WILL ALWAYS BE OUR HANNAH.
IT IS TOUGH AROUND THIS TIME OF YEAR. I WISH SO BADLY HANNAH WAS HERE , I MISS THE LITTLE THINGS LIKE GIVING HER A BATH AND THEN SNUGGLING WITH HER AS SHE LAUGHED AFTER I DRIED HER OFF. I HAVE TRIED TO BLOCK SO MUCH OF IT OUT AS THE REALITY OF IT IS EXTREMELY PAINFUL. AS I WRITE THIS TEARS STREAM FROM MY FACE. I GUESS I JUST NEED TO EXPRESS IT. OUR NEW HOME FEELS EMPTY WITHOUT HER.
AS A TRIBUTE TO HANNAH I WILL OPEN THE BANK ACCOUNT FOR HER CHARITY ON DECEMBER 22ND HER BIRTHDAY.
I THINK THIS WOULD BE A NICE TIME FOR ANYONE WHO HAS WANTED TO GIVE TO THE HANNAH MOLLIE STIMELL FOUNDATION TO DO SO NOW IN HONOR OF HANNAHS FIGHTING SPIRIT. WE ARE ALSO AT THE HOLIDAYS AND IT IS A NICE TIME TO GIVE.
OUR NEW ADRESS IS SCOTT AND JILL STIMELL
43 HONEYSUCKLE CT
MELVILLE NY 11747

THANKS FOR HELPING US TO START OUR IMPORTANT FOUNDATION TO FIGHT THESE HORRIBLE GENETIC STORAGE DISEASES AND TO HELP OTHER CHILDREN AND FAMILIES WHO ARE OR WILL HAVE TO BATTLE THEM.
THANK YOU FROM THE BOTTOM OF OUR HEARTS!
LOVE SCOTT AND JILL
P.S I ALSO JUST TAPED A SPECIAL FOR HBO REAL SPORTS WITH BRYANT GUMBEL AND ARMEN KETAYIAN ON SPORTS MEMORABILIA

IT WILL AIR NATIONALLY ON HBO IN JANUARY 2006 SO PLEASE
WATCH FOR IT!!!

AND REMEMBER IF ANYONE NEEDS ANY SPORTS MEMORABILIA HOLIDAY GIFTS TO PLEASE LET ME KNOW

Saturday, November 19, 2005 9:31 AM CST

HI TO ALL I HAVE NOT WRITTEN AGAIN IN A WHILE.

WELL JUST WANTED TO LET YOU KNOW ITS OFFICIAL! WE ARE NOW A 501 C3 WE JUST NEED TO SET UP A CHECKING ACCOUNT. HOPEFULLY ONCE JILL AND I GET OUR LEGS STRONG ENOUGH WE WILL LOOK TOWARD OUR 1ST EVENT. PLEASE WE NEED CREATIVE MINDS SO PLEASE EMAIL ON CARINGBRIDGE AND LET US HEAR ANY OF YOUR IDEAS. REMEMBER MUSIC IS IMPORTANT. WE NEED EACH AND EVERYONES SUPPORT AND YOUR FRIENDS AND FAMILIES AS WELL. WE ALL CAN HELP MAKE A DIFFERENCE. HANNAH WILL ALWAYS CONTINUE TO MAKE AN IMPACT AND HER PRESENCE FELT!!! SHE WILL HAVE A REASON AND WILL LIVE FOREVER AS SHE HELPS OTHERS AND CONTINUES TO TOUCH LIVES. PLEASE HELP US TO MAKE THIS HAPPEN!!!

ON FRIDAY I WILL BE GOING TO MY 20TH HIGH SCHOOL REUNION. IT WILL BE GREAT TO SEE EVERYONE. I AM SURE IT WILL ALSO BE TOUGH AND EMOTIONAL AS WELL.
JILL WILL STAY BEHIND AS SHE REALLY DOESNT ENJOY THE REMINICING OF THE PAST (ALTHOUGH SHE KNOWS SO MANY OF MY HIGHSCHOOL FRIENDS) ANYWAY WISHING YOU ALL A HAPPY THANKSGIVING
ALSO A PLUG FOR ME IF ANYONE NEEDS ANY HOLIDAY GIFTS LET ME KNOW (SPORTS MEMORABILIA/ FRAMING ETC..
I ALSO NOW HAVE GREAT ORIG DISNEY CELLS ETC..
THANKS TO ALL FOR CONTINUING TO READ AND PLEASE WRITE US SO WE KNOW YOU STILL PEAK AT HANNAH
IT MEANS THE WORLD TO US!! I MISS HER SO MUCH!!!!
LOVE TO ALL-SCOTT

Tuesday, October 25, 2005 6:32 PM CDT

WELL WE MADE IT INTO OUR NEW HOME!! WHEW NOTHING COMES EASY FOR THE STIMELLS AS WE MOVED IN 5 INCHES OF TERRENTIAL DOWNPOUR!!! STILL SOME THINGS TO DO BUT WE MADE IT!!!
WE SPENT A COUPLE OF DAYS WITH NO HEAT BUT WERE LUCKY TO HAVE A GOOD NEIGHBOR TO HELP US WITH THAT SITUATION. IT HAS BEEN GREAT BEING NEXT DOOR TO MY GOOD FRIEND RICH AND WE HAVE MADE NICE FRIENDS WITH OUR OTHER NEXT DOOR NEIGHBORS ROB AND HAROLYN.

MY MOM JUST GOT BACK FROM FRANCE. SHE IS THE TRAVELLING WOMAN. SHE DESERVES TO ENJOY HER LIFE AFTER GIVING SO MUCH TO EVERYONE (THAT IS JUST HER WAY!)
LAST SAT NIGHT JILL AND I HELPED JAY ,MARIEL AND BABY KILEY IN AN EFFORT TO RAISE $ FOR SMA ANOTHER GENETIC DISEASE SPINAL MUSCULAR ATROPHY . WE MET THEM AT SCHNEIDERS ICU ALONG WITH DEBBIE,RON AND DILLON (DILLON HAS THE SAME GENETIC DISEASE. IT IS NICE TO HELP AND BE INVOLVED WITH SOMETHING SO IMPORTANT. BOTH FAMILIES ARE AMAZING AND DEDICATED AND WE ARE BETTER PEOPLE FOR KNOWING THEM!!
PLEASE KEEP THEM IN YOUR THOUGHTS ALONG WITH BABY JESSICA AND BABY ANNA.
LASTLY JILL AND I ARE EXTREMELY SADDENED FOR THE LOSS OF A BEAUTIFUL AND BRAVE LITTLE MAN, SCOTTY WHO PASSED AWAY A COUPLE OF DAYS AGO FROM BRAIN CANCER. SCOTTY WAS A BEAUTIFUL AND LOVING LITTLE BOY. WE WILL NEVER FORGET HIM AND WILL CHERISH THE MOMENTS THAT WE GOT TO BE WITH HIM. TO OUR DEAR FRIENDS LARRY AND DEBBIE I SHOULD KNOW WHAT TO SAY BUT ALL I CAN SAY IS THAT WE ARE HERE FOR YOU AND WE KNOW THAT YOUR LOSS IS INCONCEIVABLE. WE HOPE FOR YOU TO BE ABLE TO GET THROUGH THE DAYS AND THAT THE PAIN LESSENS AS EACH DAY GOES BY. AGAIN YOU ARE NOT ALONE AND WE WILL NEVER EVER FORGET HIM- HE IS RIGHT THERE IN YOUR HEART FOREVER!!!
WHY PLEASE TELL ME WHY WE MUST ENDURE SUCH PAIN???
PLEASE STOP FOR A MOMENT AND REALIZE HOW PRECIOUS LIFE IS AND HOW IMPORTANT YOUR FRIENDS AND FAMILY ARE.
ALSO OUR DEEPEST SYMPATHY TO DAWN AND BRIAN LEVY ON THE PASSING OF DAWNS MOTHER.
HOPING THAT MY NEXT UPDATE WILL HAVE A MORE POSITIVE OUTLOOK . PLEASE G-D TAKE CARE OF EVERYONE.
SCOTT

Monday, October 10, 2005 8:10 AM CDT

HI TO ALL, I KNOW I HAVENT WRITTEN IN A LONG TIME
SO I JUST WANTED TO GIVE YOU A QUICK FILL IN. JILL AND I ARE MOVING AT THE END OF THE WEEK. WE HAVE BEEN VERY BUSY PACKING AND SCURRING AROUND(EXTREMELY STRESSFUL!!!) HOPE EVERYONE IS DOING WELL. AS SOON AS THE DUST CLEARS AND I CAN GET THROUGH THE HOLIDAYS (HOPEFULLY MY STORE WILL BE BUSY!) IF ANYONE NEEDS ANY HOLIDAY GIFTS ETC OR KNOWS ANYONE PLEASE LET ME KNOW A LITTLE PLUG FOR ME!
I GUESS THIS MOVE WILL BE TOUGH IN THAT ITS FILLED WITH DIFFERENT EMOTIONS. JILL AND I HAVE LIVED HERE FOR THE PAST 10 YEARS AND THERE IS SO MUCH WE HAVE SHARED HERE. ALL THE PEOPLE IN OUR BUILDING HAVE BEEN SO GREAT OVER THE YEARS.
WE KNOW WE WILL NEVER REALLY LEAVE LONG BEACH-WE WILL BE BACK!. AS MY MOM SAYS AND THE SLOGAN IS WE HAVE SAND IN OUR SHOES (MY MOM GREW UP HERE AND STILL HAS MANY OF HER CHILDHOOD FRIENDS THAT STILL LIVE HERE!!!! THE OCEAN JUST KEEPS PULLING YOU BACK LIKE THE TIDE.
WE THANK ALL OF YOU THAT CONTINUE TO CHECK IN ON US AND PEEK AT HANNAH. EVEN THOUGH I DON'T WRITE SO OFTEN, I DO CHECK THE SITE EVERYDAY SO PLEASE CONTINUE TO WRITE US.
SOMETIMES THE DAYS CAN BE DIFFICULT AND KNOWING THAT SOMEONE IS THINKING OF HANNAH AND OUR FAMILY MAKES US FEEL GOOD. WE MISS HER SO VERY MUCH I WISH SHE WAS COMING ALONG TO OUR NEW HOME THERE WILL BE A GREAT EMPTINESS. I STILL FEEL LIKE SHE IS HERE. WHAT CAN I SAY??
THANKS AGAIN TO ALL FOR YOUR CONTINUED SUPPORT , LOVE AND FRIENDSHIP. I HOPE ALL HAD A HAPPY AND HEALTHY HOLIDAY.
LOVE SCOTT AND JILL

Thursday, August 25, 2005 7:37 AM CDT

HI,
JUST A QUICK UPDATE FOR ALL THAT CONTINUE TO CHECK IN ON US AND LOOK AT OUR BEAUTIFUL DAUGHTER HANNAH. JILL AND I ARE BUSY TRYING TO GET THINGS DONE AT THE NEW HOUSE. WE HAVE NOT MOVED IN YET AS WE HAVE TO DO SOME WORK TO IT. JUST SOME MINOR CHANGES, PAINTING, CARPET ETC..
WE HAVE ALSO SET UP A TEMPORARY SITE FOR THE FOUNDATION. IT WILL BE CALLED THE HANNAH MOLLIE FOUNDATION
WWW.HANNAHMOLLIEFOUNDATION.ORG
WE SHOULD HAVE THE FOUNDATION UP AND RUNNING HOPEFULLY IN A MONTH OR SO. AND THEN WILL ADVISE YOU ALL OF WHAT WE WILL DO , EVENTS ETC..
I KNOW MANY HAVE WANTED TO GIVE DONATIONS ETC..
WE WILL BE ABLE TO ACCEPT THEM ONCE THE BANK ACCOUNT IS SET UP. WE APPRECIATE ALL WHO WE KNOW WANT TO GIVE FROM THEIR HEARTS. WE KNOW THAT IF WE BAND TOGETHER WE CAN MAKE THAT DIFFERENCE. I REALLY BELIEVE!!!
WE CAN BE PIONEERS AND HOPEFULLY SEE FIRST HAND THE CHANGES.
WE NEED HANNAHS LIFE TO LIVE ON AND TO HELP OTHERS. IT IS SO IMPORTANT TO JILL AND I. WE FEEL BLESSED TO HAVE YOU ALL ON OUR SIDE. PLEASE DONT BE AFRAID TO EMAIL WITH ANY IDEAS OR JUST YOUR WORDS OF SUPPORT. REMEMBER THIS IS A GROUP EFFORT AND WE CAN'T DO IT ALONE. EACH AND EVERYONE OF YOU IS EXTREMELY IMPORTANT AS WE TAKE 1 MORE STEP IN HANNAHS JOURNEY. SHE WILL ALWAYS BE HERE WITH US AS WE TRAVEL DOWN THE ROAD TO MAKING THIS DIFFERENCE AND AFFECTING OTHER LIVES. AS ALWAYS THANKS FOR READING AND CARING.
SCOTT

Monday, August 1, 2005 7:22 AM CDT

WELL IT HAS BEEN A LONG WHILE SINCE I HAVE WRITTEN.
I SEE NOT THAT MANY PEOPLE HAVE BEEN LOOKING AT THE SITE. . IT IS PROBABLY BECAUSE I HAVE NOT WRITTEN, BUT I DO LOOK EVERYDAY AT HANNAHS SITE, I DO LOOK EVERYDAY AT HER PICTURES AND I THINK OF HER AND MISS HER SO MUCH. EVERY LITTLE GIRL I SEE IN HER MOMMYS OR DADDYS ARMS MAKES ME THINK, WHY IS THAT NOT HANNAH. I KNOW I SOUND LIKE A BROKEN RECORD BUT SHE WAS SO BEAUTIFUL AND RADIANT. IT'S JUST SO DAMN UNIMAGINABLE WHAT HAPPENED!! I LOOK ALL THE TIME AT JESSICA'S AND ANNAS SITE. I KNOW HOW DIFFICULT THE DAYS AND NIGHTS ARE AND THE STRESSES. THE NON SLEEP AND JUST TRYING TO GET THROUGH THE NIGHTS. REMEMBER 1 DAY AT A TIME!
IT WAS JILL'S BIRTHDAY ON WENDSDAY. WE HAD A LITTLE IN HOME CELEBRATION. WE JUST RECENTLY CLOSED ON OUR NEW HOME AND WILL HOPEFULLY BE BUSY WITH DOING SOME THINGS TO MAKE IT OURS. FOR THOSE THAT DO NOT KNOW JILL IS A BIG PLANNER SO THAT WILL KEEP HER BUSY AND FOCUSED.
THE FOUNDATION IS STILL COMING ALONG AND WILL HOPEFULLY BE COMPLETED IN A MONTH OR 2 . THEN COMES ALL THE CHALLENGES OF WHAT TO DO FOR OUR 1ST EVENT? WE WANT TO MAKE IT SPECIAL AND FUN. WE WANT PEOPLE TO WANT TO BE THERE. WE ALSO WANT TO REMEMBER AND HONOR HANNAH. ANY FUN SUGGESTIONS??
I WANT TO DO SOMETHING BASED AROUND FAMILY BECAUSE HANNAH TAUGHT US HOW IMPORTANT FAMILY AND FRIENDS AND BEING THERE IS. I WANT THERE TO BE MUSIC AND SINGING ETC.. AS HANNAH LOVED TO BE SUNG TO. AND I WANT THERE TO BE BIG SMILES BECAUSE HANNAH HAD A GREAT BIG SMILE (JUST LIKE HER MOMMY!) TO ALL OF YOU WHO CONTINUE TO LOOK AT HANNAH, WE THANK YOU FOR YOUR LOVE AND CARING. WE STILL NEED IT VERY MUCH AS SOMETIMES THE DAYS CAN BE DIFFICULT. YOUR NOTES ARE STILL READ EVERYDAY SO DON'T THINK THEY ARE NOT IMPORTANT, BECAUSE THEY ARE. PLEASE ENJOY THE REST OF YOUR SUMMER. STAY SAFE AND BE THANKFUL FOR WHAT YOU HAVE.
TAKE CARE,
SCOTT

Wednesday, July 6, 2005 7:32 AM CDT

HI JUST WANTED TO UPDATE ANY OF OUR REMAINING READERS. WE HOPE YOU ALL HAD A GOOD 4TH OF JULY HOLIDAY.
JILL AND I CELEBRATED OUR 4TH ANNIV (JULY 3RD AND MY SISTER MINDYS BIRTHDAY AS WELL!!! ) WITH OUR FAMILY AT THE BEACH. IT WAS NICE AND THE WEATHER WAS GREAT. JILL AND I WENT OUT FOR DINNER SAT NIGHT AND THAT WAS NICE.
BEFORE WE WENT TO DINNER WE SPOKE OF HANNAH AND WHAT WILL BE NEEDED AS WE LOOK TOWARD HER FOUNDATION. WE REALIZED THERE IS MUCH THAT NEEDS TO BE DONE AND WE WILL DO WHAT WE CAN (ALL OF US TO HELP!!!
ON A SIDE NOTE I BELIEVE THE SHOW THAT I TAPED WILL START AIRING ON THURSDAY JULY 7TH (TOMM AT EITHER 6 OR 7PM?? IT WILL AIR ON THE YES NETWORK (THE YANKEES NETWORK)
IT IS ABOUT A 4 MINUTE SEGMENT SO PLEASE LOOK FOR IT.
IT WILL AIR A BUNCH MORE TIMES DURING THE WEEK AS WELL.
ONCE AGAIN THANKS TO ALL OUR FRIENDS AND FAMILY FOR CARING AND FOLLOWING US. YOUR NOTES AND PHONE CALLS MEAN SO VERY MUCH TO US ESPECIALLY NOW!
UNTIL MY NEXT UPDATE,
SCOTT

Friday, June 17, 2005 7:37 AM CDT

HI IT HAS BEEN A WHILE SINCE I HAVE WRITTEN-
REALLY I AM NEVER AT A LOSS FOR WORDS BUT I JUST DON'T
KNOW WHAT ELSE TO SAY THAT I HAVE NOT SAID BEFORE.
JILL AND I CONTINUE TO TRY AND STAY BUSY ,TO "LIVE"
THERE ARE TIMES I GUESS WE ARE OK AND TIMES WE ARE NUMB, ANGRY,CONFUSED AND EMPTY. I GUESS ALL MUST BE NORMAL.
WE WILL START TO FOCUS ON A NEW HOME WE WILL BE MOVING INTO AT THE END OF SUMMER. WE HAVE SPENT SOME TIME AT THE BEACH
(NOT A FAR TRIP AS WE LIVE ON IT HERE IN BEAUTIFUL LONG BEACH! IT WILL BE HARD TO LEAVE A PLACE THAT WE ALL LOVED INCLUDING HANNAH. JILL AND I WOULD WALK HER ON THE BOARDWALK. WE TOOK HER TO THE BEACH LAST SUMMER AND HAVE SUCH CUTE PHOTOS OF HER IN HER LITTLE BATHING SUIT.THE MEMORIES ARE BITTERSWEET. JILL AND I HAVE BEEN HERE FOR 10 YEARS, BUT I KNOW IT IS TIME TO MOVE ON. I KNOW I WILL IN SOME WAYS REGRET IT BECAUSE I LOVE THE WATER,SAND,OCEAN,BOARDWALK AND THE PEACE IT CAN BRING. HOWEVER IT STILL REMAINS DIFFICULT TO OPEN HANNAHS DOOR.
LAST NIGHT WE WENT TO WESTCHESTER TO SEE MY NEPHEW BRIAN PLAY IN HIS LITTLE LEAGUE GAME. IT WAS GREAT TO SEE AS IT WAS ALMOST LIKE LOOKING AT MYSELF WHEN I WAS THAT AGE. HE PLAYS WITH AN EASY GRACE AND IS VERY CONFIDENT! WE THEN HAD DINNER AND IT WAS SO NICE TO BE ALTOGETHER.
ON A LIGHTER NOTE YOU CAN ALL LOOK FOR ME ON TV THE YES NETWORK (YANKEES NETWORK) AS I RECENTLY FILMED TWO 3-4 MINUTE SEGMENTS ON MICKEY MANTLE AND TED WILLIAMS FOR THE MEMORABILIA SHOW THAT THEY RUN A BUNCH OF TIMES WEEKLY. I BELIEVE THE SHOWS WILL START TO AIR IN 2-4 WEEKS SO PLEASE LOOK FOR THEM!
LASTLY THIS SUNDAY(FATHERS DAY) WILL BE EXTREMELY DIFFICULT AS IT MARKS THE DAY 1 YEAR AGO THAT I /WE REALIZED THERE WAS SOMETHING WRONG WITH HANNAH.I DON'T KNOW WHAT WE ARE GOING TO DO ,MAYBE JILL AND I WILL JUST GO SOMEWHERE. IT FEELS LIKE YESTERDAY ,BUT IT ALSO FEELS LIKE A LIFETIME AGO. THE JOURNEY THAT WE WENT ON SEEMS LIKE IT WAS YEARS. I THANK YOU ALL FOR CARING. I AM SORRY I HAVE NOT UPDATED IN A WHILE.WE LOVE TO RECEIVE YOUR THOUGHTFUL ENTRIES.
I ALSO WANTED TO INFORM YOU THAT THE FOUNDATION FOR HANNAH IS MOVING FORWARD AND ONCE AGAIN TO LET YOU KNOW THAT WE NEED EACH AND EVERYONE OF YOU TO HELP!!! YOU ALL MAKE A DIFFERENCE IN WHATEVER WAY YOU CAN. KNOW THAT WE CAN HELP. PLEASE CONTINUE TO PRAY FOR ANNA AND JESSICA AND THEIR BEAUTIFUL STRONG FAMILIES.
AS ALWAYS I LOVE AND MISS YOU SO MUCH HANNAH.
LOVE DADDY

Friday, May 27, 2005 7:31 AM CDT

WELL ANOTHER QUICK UPDATE ON FRIDAY. HOPE EVERYONE WILL HAVE A GOOD HOLIDAY WEEKEND. JILL AND I BOTH ATTENDED
A SMALL CHARITY EVENT FOR THE LOCAL LONG BEACH JCC LAST NIGHT
IT WAS TO HELP RAISE FUNDS FOR A SMALL CHILDRENS PLAYGROUND
THAT NEEDS SOME IMPROVING. IT WAS NICE TO BE THERE AS JILL AND HANNAH HAD SPENT SOME TIME AT THE JCC IN HANNAHS FIRST 6 MONTHS.
WE ARE STILL TAKING IT DAY-DAY SOMETIMES THE DAYS ARE OK AND SOMETIMES THINGS ARE A BIT FOGGY. TIME HELPS AND HURTS. DOES THAT MAKE ANY SENSE?? THE WHOLE THING IS HARD TO DIGEST. WE ARE REALLY JUST GOING THROUGH LIFES MOTIONS , KIND OF LIVING IN OUR OWN WORLD. ANYWAY I JUST WANTED TO SAY THANK YOU TO EVERYONE WHO STILL DOES VISIT AND CHECK IN. YOUR KIND WORDS MEAN MORE THAN YOU KNOW.
ALSO TO BABY ANNA AND BABY JESSICAS FAMILIES- YOU NEED EACH OTHER. I AM SO VERY GLAD YOU HAVE EACH OTHER TO LEAN ON AND SUCH WONDERFUL FRIENDS AND FAMILY TO DEPEND ON.
YOU CAN'T DO IT ALONE. PLEASE STAY STRONG AND FOCUSED.
I THANK ALL OF YOUR FAMILY AND FRIENDS FOR WRITING AND CARING.I WILL DO EVERYTHING IN MY POWER TO HELP FIGHT THIS DISEASE SO 1 DAY PLEASE DEAR G-D CHILDREN AND FAMILIES WON'T HAVE TO SUFFER!
TO EVERYONE WE THANK YOU FORONCE AGAIN FOR CARING AND PLEASE KEEP READING AND WRITING!.

SCOTT

Wednesday, May 18, 2005 6:32 AM CDT

HI TO ALL,
I LEFT MY LAST JOURNAL ON HERE FOR A LONG TIME AS I FELT IT WAS VERY SIGNIFICANT! IF YOU HAVE NOT READ IT PLEASE GO BACK TO PAST JOURNALS AND PLEASE READ IT.
THINGS ARE GOING ALONG. JILL AND I SPENT MOTHERS DAY
TOGETHER JUST HER AND I. WE WENT OUT FOR LUNCH AND WENT SHOPPING. I FIND MYSELF CONSTANTLY TELLING HANNAHS STORY AND SHOWING EVERYONE HER PICTURES. IT MAKES ME FEEL GOOD TO SHARE HER AND LET PEOPLE SEE HOW BEATIFUL AND COURAGEOUS SHE WAS AND ALWAYS WILL BE! I HAVE SPOKEN TO MANY ABOUT THE FUTURE FOUNDATION WE ARE PLANNING AND AM OVERWHELMED BY THE AMOUNT OF SUPPORT AND GENUINESS OF PEOPLE. WE NEED YOU ALL TO JUMP ON MY BACK AND DO THIS. WE CAN!! MAKE A DIFFERENCE AND HELP! THERE IS NO BETTER FEELING THAN TO HELP. FOR ALL THAT KNOW ME, YOU KNOW THE GATHERING OF PEOPLE FOR A PARTY
(AND THATS WHAT WE WILL HAVE A BIG CELEBRATION OF HANNAH)
IS WHAT I DO BEST! ANY WAY WE NEED SOMETHING TO LOOK FORWARD TO. WE CAN'T DO IT ALONE SO EACH AND EVERYONE OF YOU ARE SO VERY IMPORTANT!
PLEASE CONTINUE TO WRITE NOTES IT CAN BRIGHTEN OUR DAY TO KNOW YOU STILL READ AND FOLLOW. JUST TO KNOW YOU LOOK AT HANNAHS PICTURE AND DO NOT FORGET HER. SHE IS MY BRIGHT LIGHT AND I MISS HER DEARLY- WORDS CAN'T EXPLAIN THAT!. THANKS FOR READING. UNTIL MY NEXT UPDATE.
SCOTT

Wednesday, April 27, 2005 7:54 AM CDT

TODAY I AWOKE TO THE RAIN ON THE WINDOW, THE SOUND OF MY WIFE WAKING TO SHOWER AND THE THOUGHT OF MY BEAUTIFUL DAUGHTER, SOMEHOW WISHING WE COULD ALL STAY TOGETHER IN BED ALL SAFE AND WARM .INSTEAD I TOOK MY WIFE TO THE TRAIN SO SHE WOULDNT HAVE TO GET SOAKED AND RUIN HER PANTS IN THE BIG LONG BEACH PUDDLES. I THINK ABOUT HOW THE WORLD KEEPS GOING, HOW PEOPLE ARE ALWAYS SO BUSY SCURRYING AROUND TO GET TO PLACE TO PLACE, MEETING DEADLINES AND RUSHING AROUND. "I DON'T HAVE TIME NOW" OR GOT TO GO
IT JUST SEEMS THE WORLD DOESN'T EVEN KNOW WHY BUT IT KEEPS MOVING SO RAPIDLY. MAYBE THAT IS LIFES PROTECTION FROM THINGS THAT REALLY ARE IMPORTANT. THINGS MANY PEOPLE JUST DON'T GET. I AM CONSTANTLY THINKING ABOUT HANNAH AND HOW WE ALL WILL HOPEFULLY RALLY AROUND AND START TO MAKE A DIFFERENCE.I THINK OF THE DAY WHEN WE CAN PREVENT OR TREAT THIS INSIDIOUS GENETIC DISEASE THEY CALL NIEMAN PICK! I WANT SO BADLY TO KEEP HANNAHS MEMORY ALIVE, I BEAM WHEN I SPEAK OF HER AND CONTINUE TO FEEL HER PRESCENCE WITHIN ME AT ALL TIMES. I THINK HOW WE WERE GOING ALONG SO HAPPY AND THEN BOOM THINGS JUST SHOOK AND THEN EXPLODED! I WILL NEVER FORGET THOSE FEELINGS OF THIS CAN'T BE, NO WAY! HANNAH WAS THE PERFECT CHILD , BEAUTIFUL AND SWEET ,SOFT AND CUDDLY -THE GREATEST GIFT. WHAT THE HELL HAPPENED?? DID IT?? DID THIS ACTUALLY HAPPEN AND TO ME?? TO US?? TO HANNAH?? WHAT A NIGHTMARE. THE MUSIC JUST STOPPED. WE TRY, WE GO TO WORK WE TRY AND WORRY LIKE THE REST OF THE WORLD. ITS JUST A MASK, SOMETHING TO PREOCCUPY US. I KNOW TIME IS A HEALER AND WE MUST LIVE AGAIN (BLAH BLAH) I PROMISE YOU I/WE WILL. I KNOW THERE WILL BE FUN AND LAUGHTER AND GOOD TIMES BUT SOMETHING WILL ALWAYS BE MISSING- MY 1ST CHILD, MY LITTLE GIRL, MY HANNAH MOLLIE. SAY HER NAME FAST AND IT SOUNDS LIKE ANOMALY (WHICH MEANS SOMETHING DIFFERENT) SEEMS VERY IRONIC TO ME AS I USED TO THINK OF THAT WHEN I FIRST SAID HER NAME OUT LOUD. I LOVE THAT NAME "HANNAH MOLLIE" IT HAS A RING THAT YOU NEVER FORGET. I WILL NEVER FORGET MY ANOMALY AND MY LITTLE GIRL. HANNAH YOU KNOW I DO LOVE YOU SO MUCH IT HURTS. LOVE ALWAYS-DADDY

Wednesday, April 20, 2005 9:34 AM CDT

hi another quick update for all of you who still continue to follow our family.we just got back from clevland ohio
and had a nice time at raquel and michaels wedding. i got a chance to see jacobs field and catch an indians game against the minnesota twins (i have to be patial to the twins they are from my home away from home. we still continue to go through the motions and hannah is constantly on our minds. its sort of like we are back to a different pre hannah life, but carry this empty/missing feeling.
it's hard to describe. i have enjoyed speaking to friends i had lost touch with and seeing how many people truly care about our family and hannah. i jump at every opportunity to show hannah to people and to make people realize it's all relevant. i am taking an approach that hopefully makes people stop and realize things. i am glad that a small group of you still are looking at hannah. i hope she inspires you to think and act differently. i hope that she can put a smile on your face after you look into her wonderous eyes. i am so thankful to have had hannah (I PROBABLY HAVE SAID THAT SO MANY TIMES!) IT'S JUST THE TRUTH!! SOMEWHERE THE ROAD JUST TWISTED AND TURNED. I STILL CAN'T TRULY BELIEVE WHAT ACTUALLY HAPPENED? ITS JUST PLAIN TOUGH TO SWALLOW! I AM ALWAYS EXPRESSING MYSELF , ITS JUST A WAY FOR ME TO VENT A LITTLE.
WE WILL LOOK FORWARD TO YOUR NOTES AND HOPEFULLY SOME VISITS TO THE BEACH AS THE WEATHER GETS NICER.
I LOVE YOU ALWAYS HANNAH! -SCOTT

Friday, April 15, 2005 8:38 AM CDT

HI, JUST A QUICK JOURNAL FOR THE FEW PEOPLE WHO STILL CONTINUE TO LOOK AT HANNAH AND HOPEFULLY GET INSPIRATION FROM HER BEAUTIFUL EYES AND THAT ADORABLE FACE!
SHE WILL FOREVER BE THAT WAY. THE DAYS CONTINUE TO MARCH ON. THEY SEEM TO OVERLAP AND JUST ARE. THINGS JUST CONTINUE AND SOMEHOW WE MUST FIND IT TO GO ON. SOMETIMES JUST WONDERING WHY? THINGS JUST DON'T SEEM AS IMPORTANT AS THEY USED TO. THINGS WE THOUGHT WERE IMPORTANT, JUST ARENT OR ARE ALMOST TRIVIAL NOW.
JILL HAS GONE BACK TO WORK TAKING THAT LIRR INTO MANHATTAN AND THOSE SUBWAYS. IT SEEMS TO ME THAT IS A JOB IN ITSELF.
ITS BACK TO A GRIND AND I KNOW IT MUST BE DIFFICULT FOR HER
BUT IT HOPEFULLY WILL KEEP HER BUSY. WE WILL BE HEADING TO OHIO FOR RAQUEL(JILLS GOOD CHILDHOOD FRIEND) AND MICHAELS WEDDING THIS SUNDAY, SO THAT SHOULD BE NICE.
JUST WANTED TO GIVE YOU A LITTLE UPDATE. IM OK I GUESS??
I AM NOT REALLY SURE HOW I AM. YOU REALLY HAVE NO CHOICE
I GUESS I'M JUST A NANO SECOND FROM THINKING ABOUT HANNAH ALL THE TIME. JUST TRYING TO KEEP IT ALL BELOW THE SURFACE IN ORDER TO FUNCTION. ITS ALL SOME BAD DREAM!
ANYWAY PLEASE I ALWAYS ASK THAT YOU WRITE US. I LOVE TO KNOW THAT HANNAH WILL CONTINUE TO MAKE PEOPLE FEEL AND THINK AND TOUCH LIVES. IN SOME SMALL WAY THAT WILL HELP TO KEEP HER ALIVE. I WILL CLOSE WITH I LOVE YOU HANNAH ONCE AGAIN.
THANKS TO YOU ALL FOR CARING,
SCOTT

Monday, April 4, 2005 10:56 PM CDT

WELL WE ARE BACK FROM OUR VACATION. IT WAS VERY NICE TO BE WITH FAMILY ENJOYING THE WARM CARRIBEAN SUN. JILL WENT BACK TO WORK TODAY AFTER A VERY LONG TIME OFF. I'M TRYING TO GET BACK INTO THE SWING OF THINGS AND AT TIMES I AM, IT IS OTHER TIMES THAT REALITY HITS ME LIKE A TON OF BRICKS.HANNAHS LOSS TO US IS SO IMMENSE. SHE WAS US ,OUR FAMILY, JUST SWEPT AWAY, THE RUG PULLED OUT FROM UNDER OUR FEET.I SIT AND THINK OF WHAT HANNAH HAD TO ENDURE, HOW SHE WAS JUST SO AMAZING AND HOW SHE WAS ROBBED AND DENIED THE THINGS SHE DESERVED! DID SHE WONDER WHAT WAS ACTUALLY GOING ON?? I WAS TAKING IT 1 DAY AT A TIME IT WAS THE ONLY WAY I COULD DO IT. LOOKING BACK IT WAS JUST OVERWHELMING.
MY BODY AND MIND ARE TRYING TO SHIELD ITSELF FROM THE PAIN AND REALITY, AS IT IS THE ONLY WAY TO SURVIVE.
WE ARE MOVING FORWARD WITH THE FOUNDATION THERE IS A LOT OF JARGON AND PAPERWORK. I LOOK FORWARD TO JOINING YOU ALL TO CELEBRATE HANNAH AND ALLOW HER LIFE TO HELP OTHERS AND KEEP HER BEAUTIFUL MEMORY ALIVE. I WILL THINK OF MY SPECIAL DAUGHTER EVERY DAY OF MY LIFE. I WILL TALK OF HER WITH RADIANCE AND SPLENDOR. I AM SO PROUD OF MY LITTLE GIRL AND SO VERY SAD FOR HER. MY GREATEST MOMENTS OF MY LIFE WERE CARING FOR HANNAH. TO SAY I LOVED HER IS IN NO WAY GIVING MY RELATIONSHIP WITH HANNAH JUSTICE. IT WAS OVER THE TOP. OUR BOND IS DEEPER THAN YOU CAN IMAGINE. I AM SORRY I HAVE NOT WRITTEN AGAIN FOR A WHILE. I APPRECIATE YOU ALL READING AND STILL WRITING TO US. THE NOTES CONTINUE TO HELP US THROUGH THESE DIFFICULT DAYS. NEVER THINK THAT YOUR WORDS ARE NOT IMPORTANT AND ITS NEVER TO LATE TO CALL AN OLD FRIEND OR LOVED ONE AND TO REACH OUT TO THEM. IT IS THOSE MOMENTS THAT MEAN SO MUCH. LIFE IS TOO SHORT. TELL SOMEONE YOU LOVE THEM, HELP SOMEONE , REACH OUT IT WILL MAKE YOU FEEL BETTER AND MAY BRIGHTEN SOMEONE ELSES DAY.
I WOULD LOVE TO HEAR FROM YOU ALL IT MEANS A LOT.
HANNAH MOLLIE I LOVE YOU!!!-DADDY

Monday, March 21, 2005 6:49 AM CST

HI TO EVERYONE, I/WE ARE BACK. I WENT TO TAMPA TO SEE A BUNCH OF MY FRIENDS AND TAKE A LITTLE EXCURSION. I HAD A GREAT TIME AND HAVE NOT PARTIED LIKE THAT IN A LONG TIME.
I WENT DOWN WITH MY FRIEND RICH, IT WAS GOOD TO LAUGH A LITTLE LIKE THE OLD DAYS.SAT NIGHT MY FRIEND ANDREW THREW A GREAT PRIVATE PARTY WITH MANY NEW YORK YANKEES PAST AND PRESENT. IT WAS UNBELIEVABLE.FROM YOGI BERRA TO REGGIE JACKSON ETC.. I MET MANY NEW AND NICE PEOPLE ALL OF WHOM I TOLD ABOUT HANNAH. I NEVER WENT ANYWHERE WITHOUT MANY OF HER PHOTOS. I LOVE TO SHOW HER AND SPEAK OF HER. YOU SEE SHE STILL CAPTURES PEOPLES HEARTS AND MAKES DIFFERENCES IN PEOPLES LIVES TODAY!!! I HAD MY MOMENTS EVEN IN THE LAUGHTER
THE TEARS FOUND THERE WAY, SOMETIMES SIMULTANEOUSLY.I AM SO PROUD OF HANNAH MOLLIE ,PROUD OF HER FIGHT AND WHO SHE WAS AND WILL ALWAYS BE. PEOPLE SAW SOMETHING IN HER EYES, I MET A WOMAN WHO WAS A BABY MODEL AND TRULY TOLD ME SHE WAS BEYOND A BABY IN HER FACE AND EYES. SHE COULD NOT GET OVER HER AND THANKED ME SO MUCH FOR SHARING HANNAH WITH HER.
JILL ALSO GOT A CHANCE TO GET AWAY WITH HER MOM TO SEE HER SISTER SUSIE AND HER HUSBAND DAVID. THEY HAD A VERY NICE TIME AND IT WAS GOOD FOR JILL TO GET AWAY!
OUR NEXT EXCURSION IS COMING SOON AS I WILL BE TAKING THE SIBLINGS (8 OF US) TO PUERTO RICO. I WANTED IT ORIGINALLY TO BE TO CELEBRATE HANNAHS HEALTH, BUT NOW IT IS A SMALL THANK YOU FOR US TO SPEND TIME TOGETHER IN A DIFFERENT WAY. WE WILL TRY AND CELEBRATE HANNAH. SHE IS ALWAYS IN MY HEAD AND MY HEART.THERE WILL ALWAYS BE A PIECE
THAT IS GONE!! AS I ALWAYS ASK PLEASE CONTINUE YOUR NOTES OF LOVE AND ENCOURAGEMENT. IN MANY WAYS THEY ARE MORE NEEDED NOW AS THE SILENCE IS MORE DIFFICULT. PLEASE ENJOY YOUR LIFE A LITTLE BIT MORE AND ALWAYS BE THANKFUL FOR WHAT YOU HAVE. WE ARE GRATEFUL FOR ALL OF YOU WHO TRULY CARE. PLEASE NEVER UNDERESTIMATE THAT!
LOVE,
SCOTT

Wednesday, March 9, 2005 6:32 AM CST

HI TO ALL IT HAS BEEN A LITTLE WHILE SINCE I HAVE WRITTEN. I REALLY WANTED MY SISTER MINDYS EULOGY FOR HANNAH TO BE SEEN BY ALL. IT WAS SO TOUCHING AND POWERFUL!!! PLEASE GO BACK TO PAST JOURNALS TO READ HERS, MINE AND ALL THE PAST SPEECHES AND JOURNALS
WE HAVE BEEN TAKING IT DAY TO DAY. I HAVE BEEN GOING BACK INTO THE STORE SLOWLY TRYING TO GET MY ENERGY AND ENTHUSIASM
BACK, I KNOW IT WILL TAKE SOME TIME. SOMETIMES JILL AND I ARE A BIT LOST LOOKING TO FILL THE TIME/VOID THAT WE HAVE. IT SEEMS WE NEED EACH OTHER MORE THAN EVER AS ONLY WE KNOW THIS CERTAIN FEELING.WE MISS THE WAKING (MIGHT BE THE WRONG TERM AS HANNAH DID NOT SLEEP MUCH!) TO TAKE CARE OF ALL OF HANNAHS SPECIAL NEEDS. ALL THE CAREFUL PLANNING AND MED MEASURING, GIVING HANNAH ALL OF THEM SEEMED SO OVERWHELMING AT THE TIME. WHAT WE WOULD GIVE NOW TO BE OVERWHELMED.
WE WILL CONTINUE TO POST JOURNALS AND TO GIVE YOU INFORMATION ON WHAT WE WILL BE DOING AS FAR AS A FOUNDATION FOR HANNAH. WE WILL COUNT ON EACH AND EVERY ONE OF YOU TO HELP US MAKE THAT DIFFERENCE AND ALLOW HANNAHS LIFE TO HAVE AN IMPACT AND A TRUE PURPOSE.
PLEASE CONTINUE TO WRITE US NOTES IN THE GUESTBOOK WE STILL READ IT EVERYDAY AND FIND STRENGTH FROM ALL OUR FRIENDS AND FAMILY.

I WILL TODAY POST MY DEAR FRIEND RICH MICHALS EULOGY AT HANNAHS FUNERAL. RICH IS FAMILY!!! HE IS THERE UNCONDITIONALLY WHENEVER, WHEREVER- HE NEVER STANDS ON CEREMONY AND IS THE SALT OF THE EARTH. HE IS CARING AND COMPASSIONATE AND WE ARE ALL SO LUCKY TO HAVE A HUMAN BEING IN OUR LIVES AS SPECIAL AS HIM. I KNOW HOW MUCH HE LOVED HANNAH IT WAS SO EVIDENT IN ALL HIS ACTIONS. NOW I WILL POST HIS EULOGY

IN TIMES LIKE THESE IT IS EASY FOR US TO DOUBT OUR BELIEFS. OUR BELIEFS IN G-D,THE MEDICAL PROFESSION AND THE WORLD IN WHICH WE LIVE.... BUT THE THINGS WE WILL NEVER DOUBT AND ALWAYS BELIEVE IN IS THE COURAGE,BRAVERY,COMMITMENT AND RESOLVE OF THREE RESILIENT,DETERMINED AND REMARKABLE PEOPLE AND THEIR JOURNEY THROUGH THE UNKNOWN.

SCOTT ASKED ME TUESDAY NIGHT, "RICH WHAT IS IT ALL ABOUT?" I SAID WITHOUT HESITATION,"PAL IT'S ALL ABOUT THE KIDS,IT ALWAYS WILL BE! THATS WHY YOU AND JILL ARE HERE FOR HANNAH, YOUR MOM IS HERE FOR YOU AND HER GRANDAUGHTER AND HOWARD AND LINDA THE SAME. AND IT IS STILL ALL ABOUT HANNAH AND THE LEGACY SHE HAS LEFT, THE LESSONS SHE HAS TOUGHT, AND THE INSPIRATION SHE HAS LEFT FOR OTHER KIDS ALONG A SIMILAR JOURNEY.
HANNAH WE THANK YOU FOR THIS AND WE THANK YOU FOR YOUR SMILE, YOUR HUGE BRIGHT EYES, AND YOUR TIME.

FOR THIRTEEN MONTHS WE HAVE WATCHED OVER YOU AND NOW IT IS YOUR TIME TO WATCH OVER US. YOU ARE FREE, FREE FROM THE CONSTRAINTS OF AN ILLNESS AND FREE TO BE HANNAH AGAIN,FREE TO SIT WITH YOUR GRANDFATHER (HERBIE)AND HELP HIM WATCH OVER THIS WONDERFUL FAMILY.

THEY SAY IT TAKES A VILLAGE TO RAISE A CHILD,HANNAH YOU HAD A COUNTRY. YOU TOUCHED THE LIVES OF SO MANY IN SO MANY WAYS. YOU TOUGHT US SO MUCH ABOUT OUR COMMUNITY, OUR RELATIONSHIPS,OUR LOVE AND OURSELVES. AND YET AGAIN WE THANK YOU.

THEY ALSO SAY THAT G-D PICKS THE THE PRETTIEST FLOWERS,SOMEHOW I THINK THAT HERB(SCOTTS DAD)HELPED HIM WITH THIS ONE. SCOTT WOULD SING TO HANNAH HIS ORIGINAL VERSION OF A SONG CALLED "WHO IS THE PRETTIEST GIRL I KNOW", NOW HERB WILL KNOW ALSO WHAT HIS SON AND DAUGHTER-IN-LAW HAVE KNOWN AND WILL CONTINUE TO KNOW FOREVER.

SO DOUBT WHAT YOU WILL, BUT NEVER DOUBT THE COURAGE,BEAUTY,AND LEGACY OF THE PRETTIEST FLOWER SCOTT AND JILL CREATED.

HANNAH MOLLIE YOU WILL BE MISSED, ALWAYS REMEMBERED AND ALIVE IN OUR HEARTS AND SOULS FOREVER.
WE LOVE YOU.

Tuesday, March 1, 2005 9:40 AM CST

Hi All

I want to thank everyone for all of their love and support during this difficult time. Without our wonderful family and friends these last several weeks would have been impossible to get through.
Snowdays are good for somethings - and today I am spending the morning typing the very long eulogy I said at Hannah's funeral, so here goes.

As I pondered what to say today and how to say it I decided I would take the liberty of speaking on behalf of Hannah. I believe if she were here today, in human form, she would say the following:

Thankyou for all being here today.

To my Mommy and Daddy
You are the best mommy and daddy a kid could ask for. You, mommy, always did everything right. You had all of the prenatal testing, went to the best doctors, and always took your vitamins. In the beginning everything seemed fine, except for one thing - I never wanted to sleep. I kept you guys up every night wanting to eat and play. You see, I knew my time was limited and I wanted to spend as much of it with you as possible.
To you, daddy, I was your little girl. You sang to me, cuddled me, and loved to play "uppy". "Who is the prettiest girl I know" was my favorite song. And you were always so observant when it came to me. On Father's Day when you noticed my big tummy I was impressed, as the doctors who had recently examined me hadn't even felt this.

It was then that our great journey began. I was diagnosed with Nieman Pick type A and you were faced with a big decision. Watching the two of you pack me up and quickly jump on the plane to Minneapolis was impressive. Meeting Dr Charlie and Dr Larry, the knish lover, made me feel comfortable. They were so nice. I looked at them with my big brown eyes and they smiled back. I knew then that you had taken me to a GOOD place. I felt so lucky - what other parents would have flown halfway across the country for medical care for their baby - for FIVE WHOLE MONTHS?!!!

Although the bone marrow transplant and chemotherapy was a drag, knowing you were by my side made everything OK. You stayed with me every second of every day. You sang to me, cuddled me, rubbed my head and I knew I was just the most loved child in the whole wide world. Mommy, you expertly drew up my medications and gave me my formula boluses. You have practically earned a medical degree though all of this.

SO, PLEASE MOM AND DAD, try not to be so sad. You gave me the gift of life and then a SECOND CHANCE. As MY gift to you I want to set you free - I want you to be able to move on and be happy. PLEASE cuddle with each other, take care of each other, sing to each other, and play with each other like you have done for me. I know that will make you both feel all better.

To grandma Linda
You were always my biggest fan - and to make you happy I did stunts that only you could see. I know how many times you flew back and forth to Minnesotta lugging my clothes. I know that you alone were responsible for keeping my clothes all neat and clean. I loved falling asleep on you chest, feeling so safe and cuddly.

To Grandma Fredda
You have gone through so very much - I am so sorry. I remember your soft voice, your cuddly lap, your warm smile. I thank you for exercising me to help make me strong even though sometimes it was hard for me. You got me the best therapists and I had fun working with them. I know you are very tired and I thank you for staying up with monmmy and daddy the last night of my life. I fought hard to open my eyes so I could see you one more time.

To Grandpa Howie and Grandpa Kathy
I'm so lucky to have a Grandpa and such a young, cool one at that. You stood by mommy's side, gave Daddy big hugs, and came and went WHEREVER, WHENEVER you were needed. I knew I could count on you for your great platelets - I only twitched a little after them and what a great 3 out of 4 match! Kathy, your website words, your kisses and hugs, all made me feel so special and loved.

To my Aunt Susie and Uncle David
Thankyou for visiting me in Minnesota and keeping my mom healthy by making her eat and making her laugh. Susie, after your platelets, I was craving granola and I felt my hair start to curl. Uncle David, your level headed medical expertise was hepoful in translating the medical mumbo jumbo for the rest of the family. For this I thank you.

To my Uncle Eric and Aunt Corie
Eric, I never knew anyone could get to Long Island from Southern New Jersey so fast BUT when you found out you were a platelet match you were there in no time flat. And I must say, your platelets felt great! Thankyou for asking the doctors a million questions, always demanding answers, and looking for them anywhere you could find them including doing your own medical searches on the internet, despite the fact that you are the only non - medical uncle in our immediate family. Aunt Corie, you are Mother earth, soft and cuddly, warm an loving.

To my Aunt Nancy
I love you. You are my special aunt and I miss playing with you. Please don't be so sad. I will always be there in your heart.

To my Aunt Mindy and Uncle
Aunt Mindy, please don't feel guilty. You helped my mom and dad make sense of all the medical stuff. I appreciate your fiestiness and unending energy to advocate for me. Please thank your colleagues for insisting you leave your patients in order to be with me during the last hours of my life. It meant everything to me to have my whole family together. Uncle Dan, thanks for taking such good care of Aunt Mindy and Grandma Fredda. And, thanks for finding Dr. Charlie so quickly. You know, you gave me that second chance.

To my cousins Haley and Brian
I loved playing with you and I especially loved when you sang to me and tickled my feet. Thankyou for celebrating my first birthday with me. Remember when I stuck my fingers in the cake? That was funny! I'm so glad you shared your crib and changing table with me. They were very comfy!

To my cousins Jake, Alexis and Sydney
I will miss you. You were my playmates. I know that you have been asking about me. Your mom and dad will tell you stories about me while you are growing up.

To our friends, extended family and medical caregivers,
Just look at the website - last count 37,144 hits, and you can feel the love. How does one baby create such a stir and affect so many lives?

I want to thank you for all for your kind words, your knishes, your blood, and your positive energy.
PLEASE laugh a lot, hug each other and don't sweat the small stuff - that means you, DAD!

I am not gone.
I am the cherry on the cake
the sunlight shining on the water
the salty ocean breeze
the stars glowing in the sky
the laughter in the park

I live on in you

Love
Hannah

Sunday, February 27, 2005 8:18 AM CST

WE ARE BACK FROM ST JOHN. WE HAD A VERY NICE TIME. WE HOPE EVERYONE WILL STILL CONTINUE TO FOLLOW HANNAHS SITE AS WE UPDATE YOU ON OUR LIVES AND WHAT WE WILL BE DOING TO HONOR HANNAHS LIFE. I AM VERY THANKFUL FOR ALL WHO ARE LOOKING FORWARD TO MAKING THAT DIFFERENCE IN THE WORLD THAT WE HAVE CONSTANTLY THOUGHT AND SPOKEN OF.ALSO MANY THANKS TO THOSE WHO SENT KIND THINGS FOR US TO ENJOY ON OUR VACATION. (WE DID HAVE SOME AIRLINE ESCAPADES AS OUR FLIGHT GOING AND COMING HOME WERE BOTH CANCELLED.)
WE WILL REALLY THINK TWICE ABOUT TRAVELLING AMERICAN AIRLINES AGAIN.
DURING THESE PAST FEW DAYS MY MIND AND THOUGHTS HAVE WANDERED. THEY SEEM TO BRING ME TO THE ANGER STAGE AS I FEEL HANNAH WENT THROUGH SO MUCH AND GOT A RAW DEAL. SHE WAS SO BRAVE FIGHTING THROUGH ALL HER ADVERSITY. DOING SO WELL AND TO GET BEAT BY AN INFECTION BECAUSE HER LITTLE BODY WAS IMMUNOCOMPROMISED.AFTER ALL SHE HAD BEEN THROUGH AND TO END THAT WAY WAS JUST UNBEARABLE FOR ALL OF US, BUT FOR HER JUST NOT FAIR AND MY HEART BREAKS FOR HER.
WE TRY AND KEEP HER DOOR CLOSED TO HER ROOM AS IT IS DIFFICULT TO SEE IT OR WALK IN. I KNOW THAT I WILL GET THE URGES TO WALK IN WHEN I NEED TO FEEL HER.
I PULLED JILL OUT THE OTHER NIGHT AND WE WERE FACED WITH THE FIRST QUESTION I HAVE HEARD DO YOU HAVE ANY CHILDREN??
JILLS RESPONSE WAS HARD FOR ME TO HEAR AS SHE SAID "NOT ANY MORE". MY HEART SANK AND I HAD TO LEAVE THE ROOM.
IM SURE THOSE QUESTIONS WILL BECOME COMMONPLACE , I BELIEVE WE STILL DO HAVE A CHILD SHE IS JUST PHYSICALLY OUT OF REACH. SHE WILL ALWAYS BE OUR LITTLE GIRL WITH THOSE BIG BROWN EYES. I KNOW WHY SHE WAS GIVEN THEM AS SHE NEEDED TO SEE SO MUCH IN HER SHORT BUT PRODUCTIVE STAY HERE WITH US.
JUST FELT THE NEED TO EXPRESS MY FEELINGS AND TO PLEASE ASK YOU ALL TO CONTINUE TO WRITE LITTLE NOTES OF LOVE AND ENCOURAGEMENT. WE NEED IT MORE THAN EVER NOW.
OUR MOTTO REMAINS 1 DAY AT A TIME. (P.S I WILL POST MORE OF HANNAHS EULOGIES VERY SOON AS WELL AS MINDYS VERY SPECIAL ONE!)

LOVE SCOTT&JILL

Monday, February 14, 2005 3:18 PM CST

FIRST I MUST SAY TO EVERYONE THANK YOU FOR CONTINUING TO FOLLOW OUR FAMILY AND HANNAHS SITE. WE ARE OVERWHELMED AND BLESSED TO HAVE WONDERFUL FRIENDS AND FAMILY.JILL AND I ARE GOING ON A SMALL VACATION WITH MY SISTER DR MINDY AND DR DAN FOR SOME SUN AND JUST TO GET AWAY. THE DAYS HAVE BEEN DIFFICULT AND AN EMPTINESS PREVAILS AS THERE IS JUST SOMETHING MISSING! COMING BACK HOME IS HARD EXPECTING TO SEE HANNAH THERE IS JUST A HUGE VOID. IT SEEMS LIKE THE WORLD IS JUST A BIT HAZY.
AS I PROMISED I WILL CONTINUE TO POST THE EULOGIES.

I WILL POST DR LAWRENCE CHARNAS EULOGY TODAY. MUCH THANKS TO DR LARRY FOR FLYING FROM MINNESOTA TO NY AND PAYING SPECIAL TRIBUTE TO HANNAH.

HANNAH, YOU BEAUTIFUL LITTLE GIRL WITH THAT SPARK BEHIND YOUR LOVELY EYES. YOU DID NOT ASK FOR FAME OR NOTORIETY. YOU WANTED THE THINGS THAT ALL LITTLE GIRLS YOUR AGE WANT. THE COMFORTING EMBRACE OF MOMMY AND DADDY , THE SATIETY OF A FULL STOMACH, THE PLEASURE OF A GOOD BURP AND THE BLISS OF A GOOD NIGHT'S SLEEP.

YOU KNEW THAT LIFE IS A JOURNEY. IT HAS A BEGINNING, A MIDDLE, AND AN END. YOU KNEW THAT IT IS THE WAY OF THINGS; THAT IT HAS ALWAYS BEEN THE WAY OF THINGS. AND YOU KNEW THAT WHAT MATTERS IS THE PROCESS OF THE JOURNEY, AND NOT THE DESTINATION. YOU TOOK US ALL ALONG ON YOUR JOURNEY AND WE ARE ALL RICHER FOR IT.

DESPITE THE BEST OF PLANS, YOUR JOURNEY BEGAN WITH AN UNINTENDED DESTINATION. DOCTORS PRESSING,POKING,WONDERING WHY YOUR TUMMY WAS SO BIG."THIS ISN'T A LOT OF FUN", YOU THOUGHT. YOU WERE NOT ENAMORED WITH THE FIRST TOUR GUIDE. THAT FIRST DESTINATION HAD NO APPEAL. YOU DECIDED TO TRY A DIFFERENT TRAVEL AGENT, WITH A DIFFERENT DESTINATION. A MYSTICAL PLACE OF ICE AND SNOW, WITH BLONDE, BLUE EYED GIANTS AND THE LEGEND OF A BLUE OX,YOU THOUGHT,"WHAT YOU GOT TO BE KIDDING?" I KNOW, IT WAS THE FIRST THING THAT CROSSED MY MIND TOO. BUT THE TRAVEL AGENT WAS FIRM AND UNDERSTATED. SO YOU BROUGHT YOUR FAMILY ALONG TO SEE THE SIGHTS AND HEAR THE TRAVEL PLANS. YOU CAME AS A STRANGER IN A STRANGE LAND. YOU BROUGHT YOUR FAMILY TO MEET MINE, AND WE BECAME MISHPUCHAH.

YOU KNEW THE JOURNEY WOULD NOT BE EASY. THE FIRST PART WAS ROUGH,BUT MANY OTHER KIDS YOUR AGE HAD TRAVELED IT BEFORE. NO BIG DEAL, YOU SAID. I'M TOUGH,I CAN HANDLE IT.IT WAS THE SECOND PART OF YOUR JOURNEY THAT WAS SO DARING AND SO EXCITING. NO ONE HAD BEEN THAT WAY BEFORE. NO ONE KNEW HOW IT WOULD TURN OUT. IT WAS RISKY. BUT YOU KNEW WHAT THE STAKES WERE. "GO FOR IT", YOU SAID. "GIVING UP IS NOT AN OPTION."

SOME MIGHT SAY THAT THE PLANS WERE NOT YOUR DESIGN. OTHERS MIGHT SAY YOU HAD NO VOICE IN THE DECISIONS. AFTER ALL, YOU'RE ONLY A BABY. BUT HANNAH,I HAVE MET YOUR FAMILY. THIS WAS YOUR CHOICE,AS IT WAS YOUR FAMILY'S.

FOR THOSE OF US ALONG AS TOUR GUIDES,YOUR COURAGE GAVE US HOPE AND YOUR TENACITY FILLED US WITH AWE. MANY,MANY THINGS WERE SHARED ALONG THE JOURNEY. THERE IS TIME TO SHARE BUT A FEW. YOUR FAMILY TAUGHT MINE THAT THEIR BEST IS AS GOOD AS IT GETS;THANK YOU FOR THAT.AND YOUR FAMILY LEARNED THAT THERE ARE ONLY TWO KINDS OF MINNESOTANS;THOSE WHO LOVE KNISHES AND THOSE WHO WISH THEY DID.

YOU HAVE MOVED ON,BUT YOU ARE NOT FORGOTTEN. YOU CONTINUE TO TEACH US THE MOST IMPORTANT LESSONS OF YOUR JOURNEY. FOR THIS MOST PRECIOUS OF GIFTS,FROM MY FAMILY AND FROM ALL OF US,I THANK YOU,HANNAH. TO YOUR PARENTS,WHO ALWAYS ACTED ON YOUR BEHALF,WE GIVE THANKS THAT THEY SHARED THEIR BEAUTIFUL LITTLE GIRL WITH THAT SPARK BEHIND HER LOVELY EYES. WE SHALL MISS YOU GREATLY. GOODBYE,HANNAH

Monday, February 14, 2005 3:18 PM CST

Thursday, February 10, 2005 8:43 AM CST

WELL I CAN'T BELIEVE IT HAS BEEN OVER A WEEK SINCE HANNAH HAS LEFT US.MY EMOTIONS SEEM TO RUN THE GAMUT, FROM ANGER TO SADNESS, FRUSTRATION AND EMPTINESS. RIGHT NOW I AM JUST NUMB. THINKING THAT SOMEHOW THIS IS ALL A BAD DREAM AND THAT I WILL SOON BE ABLE TO HOLD AND CUDDLE WITH HANNAH ONCE AGAIN..
THE SIMPLE THINGS THAT LIFE HAS TAKEN AWAY. BEAUTY TRULY IS SIMPLISTIC.
I WANT TO THANK SO MANY OF YOU FOR COMING TO VISIT JILL , I AND MY FAMILY. SEEING SO MANY GREAT OLD FRIENDS HAS WARMED OUR HEARTS . IT HAS MADE ME REALIZE THE IMPACT HANNAH HAS HAD ON SO MANY AND HOW SHE HAS BROUGHT OLD FRIENDS BACK TOGETHER. HER LOVE HAS STRETCHED FAR AND WIDE AND HER DIFFERENCE IS BEING FELT. I HAVE SPOKEN TO MANY ABOUT STARTING A FOUNDATION WITH IMAGES AND DREAMS OF HELPING OTHER FAMILIES AND CHILDREN THAT HAVE BEEN OR ARE IN A SIMILAR SITUATIONS. MY DREAM IS TO MAKE THIS FOUNDATION WARM AND FUN AND I WOULD BE HONORED IF THIS JOURNEY CONTINUES WITH YOU ALL BY OUR SIDE BECAUSE I KNOW JUST AS HANNAH HAS AND WILL CONTINUE,WE TO CAN ALL MAKE A DIFFERENCE
SO PLEASE NO MORE FRUIT BASKETS AND FOOD(WE GREATLY APPRECIATED THEM!!)
. SAVE IT FOR OUR NEW FOUNDATION AND TOGETHER WE WILL MAKE A DIFFERENCE AS I PROMISED MYSELF AND HANNAH.

AND NOW FOR THOSE THAT MISSED MY EULOGY TO HANNAH
(FIRST I THANKED MY WIFE FOR ALWAYS BEING TWO STEPS AHEAD AND BEING JUST THE MOST DEDICATED, STRONG AND LOVING MOTHER TO A VERY COMPLICATED LITTLE GIRL. MY WIFE I AM SO VERY PROUD AND HONORED TO HAVE YOU BY MY SIDE.
TO THE REST OF MY FAMILY AND ESPECIALLY MINDY-YOUR FORTITUDE,STRENGTH INFINITE WISDOM AND YOUR TENACITY TO FIGHT TOOTH AND NAIL ON HANNAHS BEHALF WAS REMARKABLE AND CANNOT EVEN BE EXPLAINED. YOU JUST HAD TO SEE IT. I SAY LOVE, KNOWLEDGE AND POWER ARE DANGEROUS AND THAT YOU DR MINDY LEE STIMELL (RAUCH) ARE THE REAL "TRIPLE THREAT"

MY EULOGY FOR HANNAH FEB 4TH 2005
IT JUST SEEMS SO UNIMAGINABLE THAT WE CAN BE STANDING HERE TODAY AS 13 MONTHS AGO OUR LIVES CHANGED AND THE MOST BEAUTIFUL GIFT IN THE WORLD CAME TO US IN THE FORM OF A LITTLE BABY GIRL 5LBS 1 OUNCE-IN THE NAME OF HANNAH MOLLIE STIMELL. WOW! A LITTLE GIRL HAPPY AND HEALTHY FOR US TO LOVE,HOLD,SING TO AND TAKE CARE OF. WE WERE SO BLESSED AND LUCKY TO BE HER PARENTS.
HOW COULD I LOVE DOING LITTLE THINGS LIKE CHANGING HER DIAPER? I JUST DID!I FOUND MYSELF INSTANTLY INCLINED TO TAKE CARE OF HER EVERY NEED INCLUDING CHANGING HER VERY 1ST DIAPER-A FEELING I WILL NEVER FORGET. IT WAS AT THAT MOMENT THAT HANNAH AND I TRULY BONDED. IT WAS THEN THAT I FELT THE NEED TO MAKE HER FEEL SAFE AND SECURE;NEVER REALIZING WHAT CHALLENGES WOULD LIE AHEAD.
THE CHOICES WERE LIMITED AND WE OPTED TO ACT, TIME WAS OF THE ESSENCE AND THE RACE AGAINST THE CLOCK HAD BEGUN SO OFF TO MINNESOTA TO SEE DR CHARLIE ON THE QUEST FOR OUR MIRACLE
AND THE CHANCE TO MAKE A DIFFERENCE!
DID WE MAKE A DIFERENCE?? I DON'T THINK THAT QUESTION NEEDS AN ANSWER. DID WE GET A MIRACLE? WE SURE DID-SHE WAS RIGHT IN FRONT OF OUR FACE-HANNAH WAS AND ALWAYS WILL BE OUR MIRACLE.
SHE SHOWED US WHAT STRENGTH, LOVE AND COURAGE ARE ALL ABOUT. SHE TAUGHT US TO BE PATIENT AND HAVE HOPE AND FAITH.
SHE SMILED THROUGH ADVERSITY AND ALLOWED US ALL TO GROW AS PEOPLE. SHE HAS TAUGHT US LESSONS NEVER SEEN IN TEXTBOOKS.
SHE CAPTURED HEARTS IN A MOMENT AND LEFT IMPRESSIONS FOR A LIFETIME. HER EYES WERE DEEPER THAN AN OCEAN AND WE CAN'T IMAGINE A CHILD WHO HAS GIVEN AND RECEIVED MORE LOVE.
SHE HAS BROUGHT US CLOSER TOGETHER AND HAS TOUCHED MORE LIVES IN HER 13 MONTHS THAN MOST DO IN A LIFETIME. WE ARE SO VERY PROUD OF YOU- HANNAH MOLLIE.PROUD TO BE YOUR PARENTS AND SO VERY BLESSED TO HAVE HAD YOU.WE KNEW YOU WERE SPECIAL FROM DAY 1 AND NOW WE KNOW WHY
WE WILL ALWAYS BE YOUR MOMMY AND DADDY AND WE THANK YOU FOR ALLOWING US THAT PRIVLEDGE. WE WILL NEVER EVER STOP LOVING AND THINKING ABOUT YOU AND WE WILL SEE YOU IN EVERY
BEAUTIFUL THING!
TO MY DADDY UP ABOVE-PLEASE TAKE CARE OF OUR SPECIAL ANGEL.
HANNAH SLEEP TIGHT AND LISTEN FOR MY SONGS. WE LOVE YOU
WITH ALL OF OUR HEART AND SOUL
MOMMY AND DADDY
P.S SHIVAH TODAY THURS
100 WEST BRDWAY 6A
OCEAN CLUB
12 -10 PM

Saturday, February 5, 2005 7:58 AM CST

OH HANNAH HOW WE MISS YOU AND OUR HEART ACHES.HOW DO WE FIND THE STRENGTH TO GET THROUGH THE DAYS?? I WAKE TO TEARS, EMPTINESS AND QUIET. I DID NOT WANT QUIET!! JUST TO PICK YOU UP AND HOLD YOU AGAIN, THE SIMPLEST THINGS THAT WARMED MY HEART. WE ONLY BURIED A BODY YESTERDAY A LITTLE BEAUTIFUL ONE. BUT I KNOW YOUR SOUL IS HERE WITHIN US. WE CAN FEEL YOU LIKE THE RAY OF SUNSHINE THAT I FELT ON MY FACE AS I LAID YOU NEXT TO MY FATHER YESTERDAY. I WILL NEVER STOP THINKING OF AND SINGING TO YOU. YOU ARE TRULY THE MIRACLE WE ALL HAVE BEEN SEARCHING FOR. THANK YOU HANNAH FOR BLESSING US WITH YOUR BEAUTIFUL SMILE , BIG BROWN EYES AND YOUR ABILITY TO MAKE EVERYONE FEEL. YOU HAVE LEFT AN INDELIBLE MARK ON THIS WORLD AND HAVE MADE A HUGE DIFFERENCE. YOUR SERVICE YESTERDAY WAS BEAUTIFUL JUST LIKE YOU. PLEASE G-D AND MY DADDY WATCH OVER HER AND ALLOW HER TO GUIDE US THROUGH THE DAYS .
PLEASE KEEP FOLLOWING US AND HANNAHS WEBSITE
IN THE DAYS TO COME I WILL BE POSTING ALL OF HER TRIBUTE SPEECHES AND PLEASE REMEMBER THAT YOU CAN ALL MAKE A DIFFERENCE IN THE WAY YOU APPROACH AND LOOK AT THE WORLD
SEE BEAUTY IN ALL SPECIAL THINGS AND HOLD YOUR FRIENDS AND FAMILY CLOSE TO YOU. WE LOOK FORWARD TO READING YOUR ENTRIES AS THEY HAVE AND ALWAYS WILL BE A SOURCE OF INSPIRATION AND COMFORT . HANNAH SLEEP TIGHT WE LOVE YOU SO MUCH
FOREVER AND EVER
MOMMY AND DADDY

*** PLEASE NOTE WE ARE SITTING SHIVAH AT OUR APT 100 WEST BROADWAY APT 6A LONG BEACH NY MON-THURS 11:00 AM-10 PM

Wednesday, February 2, 2005 10:05 AM CST

Here is the Friday schedule: The funeral will be at Gutterman's Chapel in Rockville Centre at 11AM. See www.guttermansinc.com for directions. We will then proceed to the cemetary, Sharon Gardens (www.kensico.org) for the burial at about 1PM. After the burial, we will go to Mindy and Dan's house in Scarsdale (132 Brewster Rd., zip 10583) starting at 2:30 PM.
Shiva details: Saturday - after sundown - and Sunday starting 11AM at Jill's mom's house (Martin Bass, 460 Steven Ave, West Hempstead, NY) then Monday through Thursday at Scott and Jill's (the Oceon Club, 100 W. Broadway, Long Beach, NY)

FEB 2 /2005 THE MOST DIFFICULT JOURNAL TO WRITE AS OUR BEAUTIFUL HANNAH OUR HEART AND SOUL PASSED AWAY IN MY ARMS THIS MORNING AT 6:25. I CANT EVEN WRITE THIS AS TEARS STREAM DOWN MY FACE. HANNAH STRUGGLED LAST NIGHT INTO THE MORNING AND FOUGHT AS HER LITTLE BODY WAS PLAGUED BY THIS TERRIBLE DISEASE IN HER LUNGS. SHE JUST COULDN'T TAKE IT ANYMORE AND AFTER ALMOST 3 WEEKS ON
THE VENTILATOR HANNAH TOOK HER LAST BREATH. I PRAY MY DAD WILL NOW WATCH OVER HER AND PROTECT HER AND OUR FAMILY. NOBODY SHOULD HAVE TO ENDURE THIS, NOT HANNAH NOR US. THE PAIN IS IMMENSE AS I THINK THAT WE WILL NEVER BE ABLE TO HOLD OUR BABY EVER AGAIN. SHE MEANT THE WORLD TO BOTH JILL,MYSELF, MY FAMILY AND EVERYONE ELSE SHE TOUCHED!
SHE IS THE BRAVEST LITTLE GIRL IN THE WORLD OUR TRUE HERO
AND A REAL FIGHTER.I THANK G-D FOR THE OPPORTUNITY TO HAVE HER IN OUR LIVES AND FOR ALLOWING ME TO BE A DADDY AND JILL A MOMMY.
I MADE A PROMISE TO HER AND MYSELF THAT TOGETHER WE WILL ALL MAKE A DIFFERENCE IN THE WORLD AND LIKE MY PARENTS BEFORE ME THAT IS WHAT WE WILL DO.
AGAIN WE THANK YOU ALL FROM THE BOTTOM OF OUR HEARTS
FOR YOUR LOVE AND CONCERN AND FOR FOLLOWING OUR JOURNEY.
HANNAH MOLLIE STIMELL ACCOMPLISHED MORE IN HER 13 MONTHS ON EARTH AND TOUCHED MORE LIVES THAN MOST DO IN A LIFETIME!! OH HANNAH HOW DO WE GO ON WITHOUT YOU??
WE WILL NEVER STOP LOVING AND THINKING OF YOU. YOU ARE OUR HEART AND SOUL. WE LOVE YOU MORE THAN ANYTHING. HANNAH PLEASE FINALLY REST IN PEACE UNTIL WE MEET AGAIN. WE LOVE YOU SO MUCH ,
MOMMY AND DADDY

Tuesday, February 1, 2005 10:20 AM CST

feb 1st HANNAH IS NOT HAVING A GOOD DAY! HANNAH ONCE AGAIN SEEMS PUFFIER AND HAS RETAINED MORE FLUID, HER PLATELETS HAVE DROPPED BUT THE WORST IS SHE HAS NEEDED TO GET BUMPED UP TO 85 PERCENT OXYGEN(FROM 40-45%) AND HER PRESSURES ALL NEEDED TO BE RAISED. HER BLOOD GAS LEVELS ALSO DECREASED.
ONCE AGAIN WE ARE BEING TORTURED! JILL AND I ARE TOTALLY FRUSTRATED AND ARE TRYING TO CHEER HANNAH ON. THE DOCTORS MAY DECIDE TO TURN HANNAH ON HER STOMACH TO TRY AND EASE THE PRESSURE (HANNAH HATES HER STOMACH ) SO WE ARE TELLING HER TO QUICKLY IMPROVE SO WE DO NOT HAVE TO.
WHAT MORE CAN I SAY EXCEPT WE HAVE BEEN ROCKED ONCE AGAIN.
I SIT AND WONDER HOW MUCH CAN WE ALL TAKE AS THE DOCTORS REMAIN WITHOUT ANSWERS.I AM SORRY TO HAVE TO GIVE THIS REPORT, BUT I KNOW EVERYONE WANTS TO KNOW. I PRAY THAT MY NEXT UPDATE WILL BE BETTER.PLEASE STAY TUNED AND THANK YOU AS ALWAYS.
THE STIMELLS

Tuesday, February 1, 2005 10:20 AM CST

Sunday, January 30, 2005 10:07 AM CST

jan 30th another quick update. HANNAH REMAINS BASICALLY THE SAME, SHE IS STILL UNCONSCIOUS AND ON THE VENTILATOR.
HER PLATELET COUNTS HAVE DROPPED BACK DOWN AND SHE HAS BEEN ON A CONSTANT DRIP OF PLATELETS. THIS CONTINUES TO BAFFLE ALL THE DOCTORS AND FRUSTRATE JILL AND I. HANNAH ALSO NEEDED A RED BLOOD (HEMOGLOBIN) TRANSFUSION LAST NIGHT.ON THE SLIGHTLY POSITIVE SIDE WE HAVE BEEN TRYING TO LESSEN HANNAHS FLUID INTAKE AND WE FINALLY WERE ABLE TO MINIMIZE IT A BIT ALSO WE ARE LOWERING HER PEEP A BIT WHICH IS PRESSURE ON HER LUNGS (A POS THING.) HANNAH REMAINS VERY SICK AND CONTINUES TO CONFUSE THE DOCTORS BUT AS WE SAY HANNAH IS WRITING HER OWN BOOK. THEY SAY HANNAH IS COMPLICATED (TELL ME A WOMAN THAT IS NOT??) OUR ROAD IS LONG AND SLOW BUT ALL WE ASK IS FOR A ROAD TO TRAVEL. OUR LOVE GROWS STRONGER EVERY DAY FOR OUR SPECIAL LITTLE GIRL. WE ARE TRULY BLESSED TO HAVE HER HERE. TOGETHER WE WILL ALL MAKE A DIFFERENCE. WE THANK YOU ALWAYS FROM THE BOTTOM OF OUR HEARTS FOR ALL YOUR LOVE,CARING AND SUPPORT.PLEASE CONTINUE TO FOLLOW HANNAHS JOURNEY IT MEANS SO VERY MUCH TO US.
WITH MUCH LOVE,
SCOTT, JILL AND HANNAH MOLLIE

Saturday, January 29, 2005 3:50 PM CST

We are still in a holding pattern with slight improvement
Hannah is such a fighter. She is being given a paralyzing agent along with heavy sedation and she still continues to be fiesty. She responds to voices and absolutely knows when someone is talking about her. The good news is that various family memebers who are a match have been donating platelets. Hannah is just an unbelievable little girl.We want to once again thank you for all your love and prayers. Here's to hoping tomorrow will bring just a little more improvement(baby steps).
With much love,
The Stimells

Friday, January 28, 2005 11:03 AM CST

We just met with the doctors and although Hannah is still very critical and her platelet count remains low she is stable as of this moment and doing slightly better with regard to her respiratory issues. They have decreased the oxygen level slightly and are still addressing the fluid retention issues. They are trying to tweak her volume intake so her output will be far greater and hopefully reduce her swelling and weight. As we always have said stability is good in the transplant world and any slight improvement is an added bonus. We have decided to try a somewhat experimental drug that will be given to Hannah every 72 hours and she received her first injection Wednesday evening.We are hopeful that with the combination of the new drug, blood and platelet donations, positive thinking, and family support Hannah will rebound.
We would like to thank everyone for all of their help and support and of course all of their blood and platelets.
Love,
Team Hannah

Thursday, January 27, 2005 10:49 AM CST

thurs jan 27th HANNAH REMAINS VERY SICK. HER PLATELETS ARE STILL VERY LOW AND SHE IS NOT ABLE TO RETAIN THEM.
RIGHT NOW THE MORE SERIOUS PROBLEM REMAINS HER LUNGS. THE DOCTORS ARE CALLING IT LUNG DISEASE AS HER LUNGS HAVE GOTTEN TIGHTER. YESTERDAY WE TRIED AN EXPERIMENTAL DRUG THAT MAY HELP HER LUNGS, IT WAS ADMINISTERED AS AN INJECTION. HANNAH ALSO IS TAKING IN AN OVERABUNDANCE OF FLUIDS AND HAS BECOME EXTREMELY PUFFY AS IT IS BEING ABSORBED IN HER TISSUES. THEY HAVE BEEN GIVING HER LASIX(HELPS REMOVE FLUIDS) ON A CONSTANT DRIP HOWEVER IT IS NOT EFFICIENT ENOUGH. THEY ARE TRYING TO SLOW DOWN SOME OF THE RATES OF FLUID INTAKE IE PLATELETS ETC..
HANNAH HAS ALSO NEEDED MORE LINES TO ADMINISTER ALL HER MEDS AND BLOOD DRAWS ETC.. IT IS DIFFICULT TO FIND GOOD VEINS FOR HER AS SHE HAS ALWAYS BEEN A TOUGH STICK AND IT IS NOW COMPOUNDED BY HER PUFFINESS. HANNAH IS GOING THROUGH AN AWFUL LOT AND IT IS EXTREMELY PAINFUL FOR ALL OF US.
PLEASE CONTINUE TO PRAY AND LEND US YOUR SUPPORT!!!
ALL YOUR GOOD WISHES AND BLOOD GIVING HAVE BEEN TREMENDOUS.
I WANT TO PUBLICLY THANK ALL OUR COUSINS FOR GETTING TESTED FOR PLATELETS AND MY COUSIN MARGOT IS A MATCH AND HAS DONATED AS WELL AS JILLS SISTER SUSIE WHO IS GIVING THEM TODAY. FOR ANY COUSINS WHO HAVE NOT YET TESTED PLEASE
DO SO IT IS EXTREMELY IMPORTANT.
WE THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!
LOVE,
SCOTT, JILL AND HANNAH

Wednesday, January 26, 2005 9:44 AM CST

wed jan 26th HANNAH REMAINS ON THE VENTILATOR, AND THINGS ARE NOT DOING SO WELL. HANNAHS LUNGS HAVE BECOME MORE RIGID, HER PLATELET COUNTS HAVE DROPPED AGAIN AND SHE IS STRUGGLING. IT SEEMS EVERYDAY MY ANXIETY LEVEL RAISES (I DON'T KNOW IF IT CAN GO ANY HIGHER?) WE JUST CONTINUE TO SIT BY HER SIDE AND HOPE AND GIVE HER ALL THE LOVE AND SUPPORT WE CAN AND BELIEVE ME AT TIMES IT IS NOT EASY.
EVERYONE IS HERE TODAY FOR SUPPORT AND HOWIE AND ERIC GAVE PLATELETS YESTERDAY WHICH HOPEFULLY HANNAH WILL RECEIVE TOMORROW. ONCE AGAIN THE DIRECT DONOR FEES HAVE BEEN WAIVED ON THE BLOOD SO PLEASE GO DONATE BLOOD AND PLATELETS! YOU CAN EMAIL MINDY FOR THE INFO YOU WILL NEED. THANKS AS ALWAYS-SCOTT

Tuesday, January 25, 2005 9:51 AM CST

jan 25th i was disappointed to find out that my platelets were not able to be used as i had tested positive for a basic cmv virus. this means unfortunately that i will never be able to donate my platelets that hannah needs so badly. we were also rocked this morning as hannahs platelets have dropped significantly. we had thought there was a possibility of her turning a corner but we are right back at square 1 . hannah is just not able to keep her platelets and this has been going on for 3 weeks w/out any answers.she also needs another hemoglobin transfusion and always constant platelet transfusions. to say jill and my frustration level is at an all time high is an understatement. we are just throwing our hands up in the air. what next?? the days just seem to run into each other in hopes that we can get through another one. what else can i say???
just wanted to keep you all informed and wished it was better news. ON A SIDE NOTE I BELIEVE THE NY BLOOD BANKS HAVE WAIVED THE DIRECT BLOOD DONATION FEE FOR HANNAH. PLEASE CALL THEM.
ALSO PLEASE JUST GO AND DONATE PLATELETS THEY WILL GO INTO THE BANK AND BE TYPED IF FOR SOME LONG SHOT THEY ARE A MATCH FOR HANNAH SHE WILL GET THEM. PLATELETS ARE NEEDED DESPERATELY!!! GO MAKE A DIFFERENCE!!!
THANKS AS ALWAYS,
SCOTT

Tuesday, January 25, 2005 9:51 AM CST

Monday, January 24, 2005 8:24 AM CST

JAN 24TH MY BIRTHDAY. I WILL BE HONORED TODAY TO GIVE MY PLATELETS TO HANNAH.
HANNAH REMAINS UP AND DOWN STRUGGLING TO KEEP HER PLATELET LEVELS UP. SHE HAS CONTINUED TO HAVE A HIGH HEART RATE AND BLOOD PRESSURE.LAST NIGHT SHE STRUGGLED WITH HER OXYGEN LEVELS. THIS MORNING SHE SEEMS TO BE DOING BETTER. THIS IS TRULY A ROLLERCOASTER RIDE AND FOR ANYONE WHO KNOWS ME I HATE THEM!!!
TODAY IS 8 DAYS THAT HANNAH REMAINS UNCONSCIOUS AND STILL ON THE VENTILATOR A VERY TOUGH THING FOR JILL AND I TO SIT BY AND WATCH. TODAY I PRAY PLEASE AS A BIRTHDAY GIFT HELP MY DAUGHTER TO KEEP HER PLATELETS AND TO START TO FEEL BETTER. THANKS AS ALWAYS FOR READING AND WRITING TO US
YOU CAN ALL GIVE THE GIFT OF BLOOD O NEGATIVE TO THE NY BLOOD BANKS AND ALSO JUST DONATE PLATELETS PLEASE.
YOU CAN ALL HELP TO MAKE A DIFFERENCE IN MANY LIVES.
THANKS,
SCOTT

Friday, January 21, 2005 10:10 AM CST

11am on FRIDAY. HANNAH CONTINUES TO STRUGGLE AS SHE HAS BEEN BLEEDING PROFUSELY FROM HER NOSE AND MOUTH. SHE HAS BEEN REQUIRING HEMOGLOBIN TRANSFUSIONS REGULARLY AS SHE IS LOSING BLOOD RAPIDLY. I /WE ARE STRUGGLING TO KEEP IT TOGETHER AS IT IS SO DIFFICULT TO SIT BY AND WATCH THIS. MY LITTLE GIRL DOES NOR DESERVE THIS AND HOW MUCH CAN SHE BE PUT THROUGH??ENOUGH WITH TESTING US WE WILL DO WHATEVER IT TAKES , BUT PLEASE DEAR G-D HEAR MY PRAYERS AND HELP. IF IT WERE JUST LOVE I KNOW THINGS WOULD BE OK. HANNAH HAS MY HEART AND SOUL!!! THANK YOU ALL FOR WANTING TO HELP WE TRULY NEED ALL YOUR LOVE AND SUPPORT.
HANNAH OBVIOUSLY ALSO NEEDS PLATELETS AS YOU ALL KNOW BY NOW ON A CONSTANT BASIS. JUST GO AND GET TESTED AND
GIVE PLATELETS. THEY DO ONLY LAST 5 DAYS SO TRY AND
MATCH HER FILE # AND SPACE OUT YOUR GIVING.HOPEFULLY HANNAHS HLA TYPING AND FILE # SHOULD BE REGISTERED WITH THE BLOOD BANKS. THIS IS NEEDED ONLY FOR THE PLATELETS.
ANY RELATIVE OR COUSIN PLEASE PLEASE DO THIS FOR HANNAH AS YOU ARE THE BEST CHANCE FOR A PLATELET MATCH AND
SHE NEEDS EVERY FIGHTING CHANCE.
WHAT ELSE CAN I SAY EXCEPT I LOVE MY LITTLE GIRL SO MUCH AND NEED HER SO BADLY TO HANG IN. TO ALL OF YOU.
THANK YOU SO MUCH.
LOVE,
SCOTT

Thursday, January 20, 2005 9:30 AM CST

HI
I KNOW EVERYONE WANTS AN UPDATE SO HERE IT GOES. HANNAH REMAINS STABLE STILL BEING AIDED BY THE VENTILATOR. HER ABILITY TO KEEP PLATELETS REMAINS A SERIOUS SITUATION.
SHE HAD A NEW TEMPORARY LINE PUT IN TO ADMINISTER BLOOD AND MEDICATIONS ETC.. SHE WAS ALSO ABLE TO HAVE A PROCEDURE TO REMOVE HER ORIGINAL CENTRAL LINE FROM HER CHEST WHICH WAS THE SOURCE OF HER ORIGINAL INFECTION AND POSSIBLY STILL CAUSING PROBLEMS. IT WAS A TENOUS SITUATION DUE TO HER LIMITED PLATELET COUNT , BUT THANK G-D IT WENT WELL!
YESTERDAY I WENT TO GIVE HANNAH MY PLATELETS WHICH FOR ME WAS VERY EMOTIONAL AS I KNOW IT WILL DIRECTLY HELP HER.
IF ANYONE KNOWS ME I AM PETRIFIED OF NEEDLES BUT WHO CARES RIGHT NOW!!!!
WE APPRECIATE THE OUTPOURING OF LOVE AND CONCERN ESPECIALLY WITH THE BLOOD SITUATION.
MY BEST SUGGESTIONS TO HELP ARE TO CALL 1800 933 2566
HANNAH NEEDS O NEGATIVE BLOOD . PLEASE JUST GO AND DONATE
SO THE BLOOD IS IN THE BANK.
ALSO GO DONATE PLATELETS I KNOW IT TAKES A BIT OF TIME BUT
HANNAH AND ALL SICK PEOPLE DESPERATELY NEED THEM. THEY ARE ONLY GOOD FOR 5 DAYS AND THE TYPING TAKES TOO LONG TO SPECIFICALLY MATCH TO HANNAH, BUT IF THEY DO MATCH AND WE NEED TO CALL UPON THE BLOOD BANKS THEY WILL BE THERE.
PLEASE PLEASE JUST GO AND DONATE YOU CAN SAVE MANY LIVES AND HELP MANY PEOPLE IN NEED.
WE CONTINUE TO STAY BY HANNAHS SIDE AND HOPE THAT LOVE
WILL GET US THROUGH. HANNAH DESERVES BETTER THAN THIS
AND WE ALL NEED HER TO PULL THROUGH.
THANKS-SCOTT

Tuesday, January 18, 2005 11:32 AM CST

Hannah is basically unchanged from yesterday. She remains on a ventillator and on a bunch of different medications. Several of you have inquired about blood donations. The number to call to donate O negative blood is: 800-439-6876. Tell them you want to donate directly for Hannah Stimell. If you have a different blood type and would like to donate please do and someone else will benefit from your generosity. O negative blood is very rare and therefore we really need your blood. Thanks so very much from the bottom of our hearts.
Love
The Stimells

Monday, January 17, 2005 11:38 AM CST

Well, it has been a difficult and trying couple of days. Hannah had a downward course which stabalized yesterday after she was intubated and placed on a ventillator to help her breathe. She spiked a fever, which is new for her and had severe respiratory distress. Hannah is requiring continuous platelet transfusions and has required almost daily red blood cell transfusions. In addition to the ventillator she was placed on nitric oxide to improve her oxygenation. She is currently on a broad spectrum regimen of antibiotics and her fever has gone down somewhat. Overall, things are very tenuous and Hannah is sicker than she has been since her journey began only 6 months ago. People have asked what they can do. We need O negative blood - so if you have this type, please get in touch with one of us and we can set you up through Hannah's doctor to donate. This would be a great mitzvah. We appreciate everyone's well wishes and will check in and read all your journal entries.
Mindy

Thursday, January 13, 2005 1:09 PM CST

HI,
FELT THE NEED TO LET YOU ALL KNOW WHAT IS GOING ON!
WE HAVE ALL BEEN THROUGH SO MUCH , BUT NOW WE ARE ALL BEING EXTREMELY CHALLENGED!! I FEEL LIKE A BOXER IN A 12 ROUND FIGHT BEING CONSTANTLY HIT AND TRYING TO REGAIN MY/OUR BALANCE. HANNAH AT THE CURRENT TIME IS NOW IN THE ICU (INTENSIVE CARE) AT SCHNEIDERS CHILDRENS HOSPITAL
HANNAH IS NOT ABLE TO MAKE PLATLETS AND HAS BASICALLY NONE IN HER BODY. THIS IS AN EXTREMELY DANGEROUS SITUATION!!!
HANNAH DOES NOT HAVE THE ABILITY TO CLOT HER BLOOD, SHE HAS HAD PLATELET TRANSFUSION AFTER TRANSFUSION, CAT SCANS AND ANTIBODY TRANSFUSIONS. NOTHING GIVING US ANY ANSWERS
AND HAVING THE DOCTORS BAFFLED AND GUESSING! NEEDLESS TO SAY WE ARE EXHAUSTED AND EMOTIONALLY DRAINED. THERE IS NO WAY TO EXPRESS TO YOU SEEING YOUR LITTLE BABY GIRL IN A SITUATION LIKE THIS. WE ALL NEED HANNAH TO FIND SOME WAY
TO MAKE PLATELETS AND GET BETTER PLEASE DEAR G-D. ALL YOUR THOUGHTS AND PRAYERS ARE APPRECIATED AND NEEDED AT THIS TIME
WE ARE NOW AT THE RONALD MCDONALD HOUSE HERE NEXT TO THE HOSPITAL-ONCE AGAIN A SAVIOR FOR US AND A PLACE TO BREAK AWAY EVEN FOR A BRIEF MOMENT.
FELT THE NEED TO SHARE AND KEEP YOU ALL UPDATED! PLEASE READ THE JOURNAL ENTRIES AS DR MINDY WILL KEEP YOU UPDATED.
LOVE TO ALL,
SCOTT AND JILL

Monday, January 10, 2005 11:00 PM CST

HI TO ALL- JUST A QUICK UPDATE. I HAVE NOT BEEN BACK TO THE HOSPITAL SINCE FRIDAY AS I HAVE HAD A STOMACH VIRUS.TO SAY I MISS MY BEAUTIFUL LITTLE GIRL IS A HUGE UNDERSTATEMENT.HANNAH IS JUST AN UNBELIEVABLE LITTLE GIRL WITH A WARMTH AND SMILE THAT CAN MOVE MOUNTAINS! ONCE AGAIN WE ARE BEING SHAKEN AND TESTED AND NOW THE REALITY THAT HANNAH IS SO FRAGILE HAS SET IN! HANNAH HAS 2 BACTERIAL INFECTIONS THAT SEEM TO BE EATING UP HER PLATLETS
SHE HAS RECEIVED DAILY PLATLET TRANSFUSIONS AND HER LEVELS HAVE GONE DOWN RATHER THAN UP. THE DOCTORS ARE TRYING TO FIGURE IT OUT AND IT HAS LEFT JILL AND I EXTREMELY ON EDGE.
JUST WANTED YOU TO ALL KNOW WHAT WE ARE GOING THROUGH AT THIS TIME.JILL HAS BEEN DOING AN INCREDIBLE JOB AND IS EXTREMELY TIRED. I DON'T KNOW WHAT ELSE TO SAY EXCEPT
PRAY FOR US AND HANNAH.
THANKS-SCOTT

Friday, January 7, 2005 10:42 AM CST

so it has been quite hectic and exhausting these past days. Hannah actually has two bacterial infections which the Drs have identified and therefore are giving the appropriate antibiotic. The antiiotic is administered through IV 3 times a day and hoepfully will clear the infections within 10 days so we have officially checked in to Schneiders childrens hospital. There is just never a dull moment and I guess that is what life will Be like for quite sometime. Well, I am sure Hannah is awake from her power nap so I will head back to the room but please stay tuned for the next chapter. Have a great weekend!
Jill

Wednesday, January 5, 2005 9:31 AM CST

HI TO ALL I WISH WE CAN SAY ALL IS OK
BUT SUNDAY AM WE WERE BACK IN THE HOSPITAL AS IT APPEARS NOW THAT HANNAH HAS A BACTERIAL INFECTION THAT SHE RECEIVED ON 1 OF HER CENTRAL LINES. HANNAH HAD A FEVER WHICH IS NOW UNDER CONTROL, SHE IS ON I.V ANTIOBIOTICS AMONG OTHER THINGS. THE BEEPING , LINE OCCLUSIONS, AND ALL THAT FUN STUFF IS BACK. IT HAS BEEN EXTREMELY STRENOUS AND EXHAUSTING AND IT LOOKS LIKE AT LEAST A 10 -14 DAY STAY AT SCHNEIDERS CHILDRENS HOSPITAL. WE HAD A BIT OF A SCARE ON SUNDAY NIGHT AS HANNAH NEEDED A BLOOD TRANSFUSION(HEMOGLOBIN) AND SOMEHOW?????? SHE WAS ADMINISTERED ABOUT 4X THE AMOUNT SHE WAS NEEDED!!! A VERY DANGEROUS AND SCARY SITUATION TO SAY THE LEAST AS THIS COULD HAVE CAUSED HER CARDIAC FAILURE!!! I AM HAPPY TO LET YOU ALL KNOW THAT HANNAH BESIDES BEING VERY RED SEEMS TO HAVE BEEN ABLE TO WITHSTAND THIS. MY GIRL IS A FIGHTER!!!!! WELL JUST ANOTHER BUMP IN THE ROAD IN OUR NOW TURBULENT LIFE. WE WILL TRY AND KEEP YOU POSTED AND I KNOW DR MINDY WILL ALSO POST IN THE JOURNAL OUR HAPPENINGS.
MUCH THANKS TO DR MINDY AND DR DAN FOR ALWAYS BEING 1 STEP AHEAD AND BEING THE BEST ADVOCATE FOR HANNAH. THEY ARE BOTH EXTREMELY KNOWLEDGEABLE AND CARING PEOPLE AND DOCTORS AND JILL AND I ARE SO VERY BLESSED TO HAVE THEM LITERALLY IN OUR CORNER. TO ALL THE REST OF OUR FAMILY AND FRIENDS YOUR HELP, LOVE AND SUPPORT ARE ALSO VERY IMNPORTANT AND APPRECIATED ESPECIALLY DURING THESE TIMES!
PLEASE PLEASE CONTINUE TO SIGN THE GUESTBOOK SO WE KNOW YOU ARE STILL FOLLOWING ALONG. UNTIL NEXT TIME AND TO BETTER UPDATES AND A HAPPY AND HEALTHY NEW YEAR.
LOVE,
SCOTT

Saturday, December 25, 2004 5:09 PM CST

Well, what a week it has been! Between the NY times Article on Sunday, our first NY Dr's Appointment, coordinating all of Hannah's therapies, Hannah's First birthday and Scott trying to make it through retail hell the first full week home has been action packed. Nevertheless, it is good to be here and from what I understand we departed the Midwest just at the right time. Last I heard it was 10 below. Wow, talk about timing! In any event things are starting to fall into place and each day proves to be a little better.
We wanted to let everyone know that tomorrow on Fox Five at 12:00pm during he NFL pregame show Niemann Pick will be discussed. James Brown, a Fox 5 football correspondent, is a spokesperson for the Niemann Pick Foundation and all of the pregame show correspondents will be wearing Niemann Pick Lapel pins so please tune in! Publcity and awareness are essential.
Thank you all for the birthday wishes and the warm welcome home. We hope that this year proves to be a very happy and healthy one for all.
Love,
The Stimells

Saturday, December 18, 2004 7:53 AM CST

Well, we are finally HOME!!!!! The 3 of us were so very fortunate to have been able to participate in the corporate angels program. This wonderful program allowed us to fly home on a private jet which alleviated much stress and anxiety and just for the record its the only way to fly!!!! Our first step of this journey is complete, however there will be many more steps as we move onward.
I must thank from the bottom of our hearts the so many wonderful friends and family who have given so much of their love and time to us. From coming to see us in Minn. to getting the apartment in order, words cannot describe how thankful we truly are.
We also miss all of our wonderful friends that we made in Minnesota. The Ronald house-what can we say except that you are incredible people doing a most incredible thing and you will ALWAYS be our home away from home!!!!!!
To my doctor Charlie you are an incredible man who has shown so much love and dedication not just to us but to what you do! We are so very fortunate to have you by our side.
Coming home is a major adjustment, as we must now start all over with new therapists, home care, and of course doctors. Coming home after almost 5 months is completely overwhelming but as we always said one day at a time. Our safety net is now gone but we will have a new support system here. We thank everyone for following our journey in Minn. and ask that you continue to do so as we start a new chapter here in NY.
Also, please make sure to read the NY times on Sunday because there is a possibility that our story will be in print. We hope that by sharing our story we will be able to educate, enlighten and help others. We hope it will be the start of our awareness campaign.
Once again what can we say except we are very happy to be home as a family (although exhausted and a bit delirious) I am going to the store today so if anyone wants to stop by please do so although I hope to be very busy!!!!
I will end for now but promise to update you all more regularly. By the way Hannah looks great! She still has her feeding tube and is still on many meds but we are hoping to give her some type of normalcy and security here at home.
She is still manipulating me like a puppet, so I know that brain is working, I love her so much it is incredible and we will continue to give her out hearts and souls. We are truly blessed to have this wonderful special child in our lives. Thank you all for caring. Remember 1 day at a time and we believe in miracles.
All our love,
The Stimells

Sunday, December 12, 2004 9:32 PM CST

Well, who would have thought that we would be celebrating Hannah's first Chanukah in Minnesota but I must tell you it has been an amazing experience. The people here are incredible and we will need a moving van to transport all of our gifts home. We received Menorahs,toys, clothing, DVDS... all from anonymous schools and families. One family attached a card just letting us know that their nephew was so well cared for at a Ronald Mcdonald House that they simply wanted to give back. We were also fortunate this past week to have a wonderful dinner out with two incredible couples. Grandma Linda arrived Thursday and stayed with Hannah during our first real social dinner out in quite some time. It was much appreciated.
Tomorrow morning we have a clinic appointment and if all goes well we hope to celebrate Hannah's First birthday back in New York. Hard to believe it will be one year.
Well, I just gave Hannah her last med of the day and she seems to be on her way to sleep finally,(please note the time)so I guess I should do the same.
Grandma Linda leaves us tomorrow and Scott arrives tomorrow night. Again thank you to all back home for helping with the massive clean up and mission organization. We hope to see you soon!

Monday, December 6, 2004 11:15 PM CST

Scott has just called from the airport to tell me that he has arrived in Minn. safely. Due to the nasty weather both here and in NY his flight was delayed but fortunately only by one hour. Hannah is sleeping peacefully and hopefully will remain that way for most of the night. She had a great day today and her labs indicated just that. Her platelet count hit the triple digits and her white count was also up considerably. Our next appointment is Wednesday and hopefully the positive trend will continue.
Thank you again to all of our friends back home for all your help with the apartment and the airport runs. You guys are amazing and we are so fortunate to have you in our life. I cannot wait to see you all and thank you in person.
Jill

Sunday, December 5, 2004 9:46 PM CST

So it has been quite some time since my last journal entry but that has been because of simple exhaustion. It has been over a week since Hannah has been discharged from the hospital and the transition was not anywhere as overwhelming as the first time but Hannah has simply not been herself all week. The Dr. believes that although she is fever free the remnants of the virus are still running its course thereby producing one tired and irritable child. My mother returned to NY this past Monday and my brother was kind enough to fill in but I am not sure he knew what he was in for. Monday, November 29th was Hannah�s 100th day post transplant and it turned into quite a chaotic day. Day 100 is very significant in the transplant world. Day 21, 60 and finally 100 each represents a significant point in the transplant process. We started the day at 8:30am with a neurology appointment and then continued on to a neuro psychology appointment finally followed by our weekly clinic visit. . Hannah needed a magnesium infusion at the end of the day, which thereby created a very long and tiring day. My brother stayed with me throughout the day and night and I truly appreciated all his help. Tuesday was somewhat less eventful on the medical front as we waited for Scott to arrive after being back in NY for 12 long days. On Wednesday Hannah was scheduled to be sedated and have many follow up tests done, bone marrow biopsy, mri, spinal tap, bronchoscopy... but at 8:00am we met with the Dr. in Clinic and decided it was not a good idea to sedate her at this point in time due to her virus and low blood counts. It was agreed to that upon our 6 month return visit when hopefully Hannah�s central line will be removed in the operating room under anesthesia that is when the tests will be done. I think we were all somewhat relieved that in fact we did not proceed with these tests because it brought back memories of Hannah�s first surgery on August 11th when we first started our journey.
Scott returned to NY on Friday to tend to his business and to our apartment, which I hear is coming along nicely thanks in part to all of our good friends and family. I cannot thank everyone enough for all their help and please know how deeply it is appreciated. Grandpa Howie pitched in for the weekend and his help has been most needed.
Well, tomorrow we start the week with a clinic visit and hopefully better labs than last week. Thanks again to everyone for all their help, friendship and support.

Tuesday, November 23, 2004 4:50 PM CST

So Hannah is having a much better day today. She is certainly more herself and fever free as of this minute. Hannah has to remain without a fever for at least 48 hours before they will discharge us from the Hospital so we will be watching the parade this year from Fairview Hospital. We do have plenty to be thankful for this year though so it really does not matter where we eat our Turkey. Of course we will miss Scott but we know he has his hands full at home. We are so thankful for all the love and support from our family and friends and without them I do not know how we would have done it. Our family has helped us tremendously both here and back home and it is something we will never forget. We are also very thankful for Hannah's donor and for all of the wonderful great nurses and doctors at Fairview. And last but not least we are thankful for a facility such as the Ronald Mcdonald House.
Well,I am headed back to the hospital to relieve Grandma Linda from her shift but we wish everyone a very happy Thanksgiving.
Jill

Monday, November 22, 2004 7:21 PM CST

So today is Hannah's 11 month birthday and we celebrated with tylenol and antibiotics. She had a very high fever this afternoon and was quite miserable but it is now down considerably and therefore I decided it was a good time to come home and finally take a shower. Hannah had a ct scan this morning which may show some sign of an infection but we will not know anything until tomorrow. Well, it looks like we will be eating turkey in the hospital on Thursday but we will make the best of it. Grandma Fredda leaves very early tomorrow morning and Grandma Linda is now here for the week. The Grandmas are at the Hospital with Hannah and now that I am clean I am going to head back. Thank you to everyone for checking in and I will try an keep you all updated.
Love to all,
Jill

Sunday, November 21, 2004 9:04 AM CST

well not a great weekend for us here in Minnesota. Of course Scott decided to go home for the first time in months just to try and get things in order and in less than 48 hours of his departure Hannah spikes a fever and needs to be readmitted to the Hospital. Late Friday night we took Hannah by ambulance over to the Emergency room and by 3:00am we were back on our old floor 4A. It was nice to see familiar faces but I would rather see them out at a restaraunt and certainly not at 3:00am discussing Hannah's meds. Needless to say I did not know what day or time it was on Saturday but I knew Hannah was safe. The Dr's are giving her antibiotics and running tests but we will not know anything until maybe Monday. It is common for transplant patients to get a fever but if and when they do they need to be admitted to the hospital.
Scott we miss you and your help but we know you are working very hard back home and we will try and keep everything together. Grandma Fredda did overnight duty at the Hospital last night which is must appreciated. I was completely exhausted yesterday and and I am so fearful of getting sick so having a night off truly helped.
Well I am off to the hospital and hopefully this hospital stay will be a much shorter one.
Jill

Monday, November 15, 2004 9:30 AM CST

Monday morning update , as Jill gets Hannah ready for clinic today where she will have more blood draws to check all her counts etc... This is standard for Monday protocol.
Hannahs counts have remained good during the past couple of weeks.
Grandpa Howie was here for the weekend and Hannah really loved having him here, as always he was a big help and
you can see how much he loves his little "BANNANA"
We miss him already!!!! I came down with a cold/throat issue over the past couple of days and it seemed to be in full force last night. I have slept in the other room on the couch and have been trying to wear my mask. Jill continues to really be on top of her game and is unbelievably focused on the job at hand HANNAH, as it truly is a 24/7 thing with hardly any breaks throughout the day as Hannah almost always needs something beyond attention and comforting. The med schedule is 8 am, 12 pm 2pm 4 pm
8 pm 11:30 pm put in between that Hannah is getting bolus syringe formula feedings every 2 or so hours and each time 3 syringes makes for a full day!!!
Grandma Fredda is on a plane back today, once again for close to the 10th time!!! She is just incredible what else can you say? she is unbelievable!!!! Grandma has learned to give Hannah her bolus feedings and has done a great job!
We are counting on all her help.
Just another quick update to clue you in a little.
Hope the start of your week is not to affected by both NY
football teams losses. please let us know what is going on in new york. Until next time.
take care,
Scott

Tuesday, November 9, 2004 9:32 PM CST

Hi, just another quick update as things here have seem to
have stabilized a bit.Hannah is just remarkable and i love to play with her and make her giggle!!! Yes giggle
she is a very observant and is grabbing everything in sight. We still continue to remain tired as Hannah is constantly waking during the night. As Jill stated it is probably due to all her meds!We have some upcoming tests
at the beginning of December and if all goes well we are hoping to be back by mid December.It is then when we will have to line up Doctors, therapists etc.. We remain FOCUSED and on our course and feel blessed to be in such a safe and warm environment such as the Ronald Mcdonald house and there amazing staff (you all know who you are) ,as well as the amazing staff at fairview univ hospital. As i stare over at Hannah she is sleeping on her side for the 1st time ever!!!
We are looking for many first's and i know with the power of love and support we will celebrate them all. My heart is warmed each and every time i see Hannah smile and i know
that what we are doing here is significant and hopefully will make people sit up and take notice. Ironically there is a soap show on now where a baby is getting a stem cell transplant. THANK YOU ALL FOR STAYING TUNED IN!!! again continue to write as we will know you are checking in. I AM SORRY FOR NOT WRITING AS MUCH, IT IS JUST THAT WE ARE TRYING TO GET OUR SYSTEM TOGETHER HERE.
I hope everyone is well and staying warm in New York
Until Next update,
Scott

Sunday, November 7, 2004 9:31 PM CST

Day +78
so it is 10:00pm here in Minneapolis and Hannah is still awake. I always tell Hannah that most little girls her age are asleep by now but I guess she is not like most little girls. The Drs. tell us that all of the medications play a large part in her sleep patterns and hopefully as they taper her sleeping will improve.(by then her parents should be heavily medicated!) In any event although sleep is critical to your health and mental well being it just is secondary in the scheme of things. As long as Hannah progresses, smiles and plays we just continue on. We continue to take her to all of her therapies and we continue to try and keep her safe and strong. Hannah is getting stronger every day and we hope she keeps on amazing us.
Well, it is time to draw the 11:00PM med so until tomorrow.
Good night to all.
Jill

Sunday, October 31, 2004 10:28 PM CST

Hi all,
This is my second guest writing appearance here in Minneaplois. Once again I feel the need to draw attention to the environment of genuine caring, concern and love that circulates at Fairview and the Ronald Mc Donald House.
I had the opportunity to spend some time with Dr. Charles Peters who along with Hannah, is a pioneer in the treatment of Neiman Pick Type A. Dr. Peters dressed as Mr. Potato Head for Halloween was anything but a potato head!! :) He is a kind man with a genuine, somewhat tamed enthusiasm for Hannah's progress.
Coming here for the second time in as many months I have noticed some amazing changes in Hannah. She grabs at things constantly, smiles alot, cries less (Scott and Jill may say different), and laughs a ton!! She follows your every move, capturing your heart and attention as she does.

Hannah, Scott and Jill have still a long road ahead! A road with few street signs and not many directions. However, I just know they will find their way. I know it!! :)

Amazingly, and in the words of Dr. Peters "The world is watching"! Watching "The Sphyingo Kid"! (our new name for Hannah). Hannah continues to maintain levels of ASM in her blood!!

My second trip to Minneapolis is drawing to a close! The best part is knowing that the next time I see Scott, Jill and Hannah is in New York! Where they belong!!! :)

God bless them all!!
Rich Michals

P.S. The G-Men always do their best work in the Metrodome!! Scott, Jill and I were there to witness this latest destruction of the Vikes from the 14th row 50 yard line!!
Sorry Dante' and Co.!!!!

Tuesday, October 26, 2004 4:42 PM CDT

hi,
just a quick update for all you great people out there ,who continue to follow Hannahs journey. Hannah continues to do as well as we can expect to this point. We have sent blood work to the special Wenger lab out in Pittsburgh to follow Hannahs engraphment and her enzyme level. We have also increased her csa level (anti rejection medicine) which fights ofF GVH DISEASE (GRAPH VS HOST). We also have increased Hannahs bolus feedings during the day and decreased her nightime feeds which she receives via a feeding machine. The no sleep thing continues as Hannah gets up much of the night , we believe as she has stomach pain from the continous night feeds and all the meds she receives. She has night sweats due to all the meds and i am constantly rotating her pillow so she can find some comfort. Hannah is hanging tough and so are
we. I am so very proud of my wife she has been a rock and has kept us all focused and together with her great med drawing and therapy planning. Jill is a great organizer and deserves all the accolades you all have sent!! Me on the other hand i guess i get the job done however it seems to strain me a bit more as i am not a great planner and have been trying to keep the business afloat all the while being sleep deprived and just flat out exhausted!!!
We missed grandma Linda this week as she came down with an illness so Jill and i have gone solo for the 1st time since being down here. It has been more tiring ,but we realize that we can do it! It has been a great bonding experience for the 3 of us.
Thursday we welcome back our great friend Rich (Michals)) for his 2nd go round. I know he will see a different Hannah and we are very excited to have him back!!
Grandma Fredda makes her return once again on Saturday
and will hopefully buy us a few hours to get over to the metrodome to watch big blue play the Vikings courtesy of our good friends Scott and Nancy Maiman. We thank them soo much!!!!
Well what else can i say except we LOVE!!! Hannah so much and continue to take it 1 day at a time!! .Please
continue to follow our journey and write in our journal.
Once again we send our LOVE and strength to our dear friends out in Utah we are constantly thinking of you!!!!!
HAPPY HALLOWEEN,
THE STIMELLS

Thursday, October 21, 2004 9:37 PM CDT

Day +61
We met a mother in clinic today that basically summed everything up - "You are always tired". It is so true. You can never relax because ther is always something that comes up, a fever, a virus, new medications to administer. The days are long and tiring but we know we must be strong for Hannah.
Back in July, during our evaluation week we met a wonderful family and throughout our hospital stay we grew closer to them. We exchanged stories by the water cooler, updates on our daughters and even managed to have some laughs.After a long stay here in Minn. they told us that they were finally going to go home and they could not have been more thrilled. When we had visited 4-A (Bone Marrow Transplant floor)last week we were so happy that their name was no longer on the room that they had occupied for so long. We knew that they were on their way home and that we would contact them this week after they had some time to setlle in. Well, unfortunately this did not happen because we just found out that their precious little girl passed away at the end of last week and we are deeply saddened. We will never forget how she touched our lives and gave us the strength to begin our long journey. We will miss her smiles and her spirit will live on in the hearts of all those she touched.
So you see although our days are long and tiring we continue on for the love of our daughter and we must appreciate each and every day.

Tuesday, October 19, 2004 6:55 PM CDT

So the weather here in Minn. is a little colder now but it really has not been so bad.(except for the flurries on Friday) I think NY weather has actually been worse from what we hear. This past weekend was somewhat eventful for us in a positive way. We were fortunate enough to have the weekend off from clinic and also to attend the Ronald Mcdonald funraising event on Friday night. It was a wonderful event and it felt good to get dressed up and take part in such an important event. Scott even had some sports memorabilia items sent and donated from NY for their silent auction. The only slight mishap was when Hannah's feeding pump decided not to work and we therefore had to give her boluses of food every couple of hours, so sleep was out of the question. It is amazing how I used to think that travelling with a healthy baby was so difficult in so far as trying not to forget anything but I must tell you now there is no comparison. Now not only do we need to remember the standard baby stuff but also 20 different medications a feeding pump and everything that goes along with it. We didn't realize how good we had it. Anyway, you do what you have to and somehow it all comes together. We met some wonderful people at the event and we walked out of there feeling good.
Hannah had a clinic appointment Monday morning and her counts and blood pressure remain good. We are tweaking the feeding schedule and hopefully this might help Hannah sleep a little more during the night as well as her parents.
Well, I think it is almost time for the Yankee game, that is if they are still playing due to the weather in NY. Please let it be a much shorter game and please let the Yankees be victorious. The Yankees in the World Series would be a great diversion!

Thursday, October 14, 2004 9:07 AM CDT

Uncle Dan reporting and all good news to pass along.
I went with Jill and Hannah to the clinic yesterday. We met Dr. Peters who is as good as previously advertised. All of Hannah's blood work was stable or improving and her blood pressure has been good. This means less medication for Hannah (and less work for Jill). Hannah is also tolerating her bolus feeds well so she doesn't have to be connected to the feeding pump all day. They can all be more mobile now - just in time for the Minnesota winter (the forecast called for flurries on Friday). Most important, though, is her amazing development from when I last saw her over the summer. She is now alert, playful (and manipulative - an important developmental milestone for Hannah who has Scott completely bewitched and bewildered), and much more active with impressive tone and motor skills. She is often happy and smiling and she definitely has her likes and dislikes. She really is a medical miracle.
As for Scott and Jill, they're alive and, well, alive. Clearly it is better for Hannah to be out of the hospital, but that also has put a lot of pressure on her parents, and we all know how well Scott responds to additional pressure. They are bearing the burden, with the help of everyone who visits, and they are starting to look forward to returning to NY. They will continue to need all the help and support they can get even when they get home, hopefully sometime in December. It would be great to recreate the supportive environment of the Ronald McDonald House (without all the candy and a healthier diet so Scott can lose some weight and Jill can gain some weight). It would also be nice for Scott to find some more age-appropriate activities so he doesn't feel like such an old man after trying to play full court hoops with the students at the U Minn gym.
I apologize for the new pictures - haven't figured out to size them just right, but we wanted to update anyway.

Monday, October 11, 2004 4:53 PM CDT

hi,
just a quick update! (i will try and figure picture thing out soon so hang on!!!
a big thank you to grandma Linda who left today for all her help!!!! Mindy is still here and allowed Jill and i to get our 1st night off in over 2 weeks as we went to a hotel..Mindy is a pediatrician and was able to draw up all Hannahs meds etc.. so we were able to leave her w/Mindy and grandma Linda. Jill and i are just so exhausted ( i prob more than Jill as i don't handle the no sleep thing very well at all. It just seems to be finally just breaking me and i feel like checking myself into a hospital.
A big thanks to my good friend Alan kapson and his son Marshal for coming down extremely last minute (and i mean last minute!!!) to catch the Yankees come from behind to beat the Twins 6-5. ALSO THANKS AGAIN TO ANDREW LEVY
FOR GETTING US GREAT SEATS IN THE YANKEES FAMILY SECTION!!!
Now for the important Hannah news! Hannah is doing very well. She smiles and even giggles much of the day!
she did not need any transfusions today and we even will get to skip a day of clinic tomorrow.Hannah still will not take any food by mouth and we still must have her on her feeding tube. during the day now we will give her bolus shots through her feeding tube of formula, that will enable us to unhook her for some times in the day and allow us a little more flexibility during the afternoon hours.
The draw back is it has to be drawn up sort of like another med and administered every 2 hours. I guess everything in life is a trade off!!!
Overall Hannah is doing very well and seems happier over all.
We will be saying goodbye to Mindy tomorrow and her husband DR DAN will be arriving on the redeye from San Fran
tomm am so we will have him until wed and then grandma Fredda is back once again!!
Once again we thank everyone for changing their lives and schedules for us so we would never be alone!!!!!
it is truly amazing and will never be forgotten.
Please continue to sign the guestbook we love to hear from you all!!
again just good news from Minnesota with the exception of parental exhaustion!
Love to all,
scott

Thursday, October 7, 2004 11:12 PM CDT

hi,
Scott again!! oh no!!! well tonight grandma linda will attempt to see what a night with Hannah is like!
better have the coffe ready!
Hannah gave us a run for our money once again last night and then never let up through today!
8am and only through 4 meds (20 more to go!) Hannah decided to pull out her feeding tube once more (her 3rd time!) (the screams you could here them to new york (louder than the bronx after last nights 12 inning victory!!!
so basically we thought we were getting a day off from clinic and just going for her therapies but that wasn't happening.we then had HANNAH RECEIVE A NEW FEEDING TUBE
SHE WASN'T THRILLED ABOUT THAT.AFTER THE TRAUMA OF THAT HANNAH HAD OCCUPATIONAL THERAPY FOLLOWED BY SPEECH THERAPY.
AFTER THE THERAPIES WE ANTICIPATED A QUIET DAY BUT IS THAT EVER THE CASE?? WELL EVIDENTLY NOT AS THE NEW FEEDING TUBE DECIDED TO EXPLODE A FEW TIMES , THE FORMULA PUMP WENT HAYWIRE (BEEPING AS IT WAS BLOCKED ETC..) ADD HANNAHS SCREAMING AND THE PHONES RINGING AND YOU HAVE A FAMILY
WHO FEELS LIKE THEY ARE IN THE RING WITH MIKE TYSON JUST TRYING TO STAGGER THROUGH TO THE NEXT ROUND AND WAITING FOR THE BELL (ALSO COVERING OUR EARS FOR A BITE OR TWO(HA)
BUT WE MUST SAY THROUGHOUT ALL THE CHAOS WE THEN LOOK AT HANNAHS CUTE SMILING FACE AND SEE HER THROWING OUT ALL HER TOYS FROM THE STROLLER -WE KNOW IT IS ALL WORTH IT!!!
HANNAH ULTIMATELY IS MUCH HAPPIER BEING OUT OF THE HOSPITAL AND IF HER PARENTS SURVIVE WE WILL ALL BE ONE HAPPY FAMILY.
BUT BELIEVE YOU ME- RIGHT NOW HANNAH IS THE BOSS!!!!

KEEP BELIVING AND SENDING YOUR LOVE

P.S I WILL GET SOME HELP W/NEW PHOTOS (ALSO WITH HANNAH AND HER BLUE MASK!

DON'T FORGET TO KEEP WRITING.
ALL OUR LOVE
THE STIMELLS

Sunday, October 3, 2004 9:27 PM CDT

Well it's Scott and its been a bit of a hectic week!!!
We have been so very tired and that is the reason why we have not updated you.Also my sister Mindys last journal was so right on and really hit the nail on the head!!!
Mindy i want to publicly say you are an incredible person, doctor and human being!!! I KNOW WITH YOU IN THIS WORLD WE WILL NEVER BE ALONE!!! Your unending love and tireless support, medical guidence and fortitude have made myself and Jill
realize how truly blessed we all our for having you and
your family in our lives. We can't wait to see you again on the ninth!
TO my mom Fredda who is the rock that has always stepped up to all the challenges life has thrown at you. You mom will always be my HERO!!!!. I know from the way that i treat you at times you may not feel that , but there is noone in this world that i have ever met that has given to others rather than herself (ALWAYS!!!)
i would love for people to write in this guestbook as anyone who knows my mom will 100 percent agree!
I JUST FELT THE NEED TO PUBLICLY THANK YOU AND TELL YOU HOW MUCH YOU MEAN TO US!!! Mom we said goodbye to you today but we know you will be coming back real soon.
Now we await the arrival of Linda , who has been an anchor on team Hannah spending many long stays and giving Hannah so much love and care, Hannah can't wait to see her grandma!!!! There are so many of our friends and family
that have been there for us in this 1st stage of our journey and we love you all!!!

Now to give you a fill in on the transition back to Ronald Mcdonald.
To put it simply it has been overwhelming as we have had to really become 24/7 caregivers!!! Sleep is a forgotten word and i have been a bit dilusional (more so than usual!) Hannah is receiving about 16 meds or so at all times of the day, all different qty doses some .22ml , some 3.75 etc.. Jill is the organizer of the meds and puts them in little plastic bags after we draw them in syringes to put in Hannahs ng tube. Of course she seperates the times and which need to be refrigerated.
I have been put in charge of the ng tube formula feeding which entails getting a special bag filled (taking out the air ,priming through her portable machine and measuring how much food to put in depending on where we will be going. We always need to bring the machine with us and Hannah is always right by our side as we are attached by her tube. Hannah needs to wear a cute blue mask whenever we leave our immediate room at Ronalds.
Our mornings consist of daily visits to the clinic ranging from 2-5 hours depending on what Hannah needs that day . these include
blood draws, and iv infusions for some pottasium and magnesium (so eat your bananas!)
Hannah needed a hemoglobin blood transfusion on friday
and will likely need a platlet transfusion in the next day or so. DO YOU KIND OF GET THE FEELING OF WHAT WE ARE GOING THROUGH??.
We will adjust ,it may take some time but it will just be another challenge that we will step up to.
Jill and i want all of you to understand that Hannahs progress so far is fantastic, however we are far from our MIRACLE and there is a very long road ahead.We just don't want people to misunderstand what is needed here.
WE DO NOT WANT TO DAMPEN ANYONES ENTHUSIASM.WE JUST WANT EVERYONE TO REALIZE THAT THIS IS A HUGE HURDLE AND WE COULD'T BE HAPPIER THAT THINGS UP TO THIS POINT HAVE GONE
SO WELL UNDER THESE EXTRORDINARY CIRCUMSTANCES.

Now for our final thanks!!

to our great friends
who both came here seperately.
Heather and Rick it was amazing seeing you and just spending time with you. Stephanie and Kevin you guys are just so amazing. The love , care and concern for our family was truly felt and we are so blessed to have you all in our lives.(Thanks for finding us good sushi finally!) Also thank you for shlepping food and lots of goodies for all of us to enjoy, eat, read and play with!
You allowed us some normalcy and who could have asked for 2 groups of our friends to hang out with in Minnesota
it was truly fun. STEPH YOU ARE HIRED TO COME OVER AND CLEAN OUR APARTMENT BEFORE WE GET HOME! Jill and i will never forget having you here!!!
Now to end with the Yankees /Twins (i bet my dad gave us that present!!!)
I Just spoke to my great friend Andrew Levy who has always been a tremendous friend to myself and my family
and he has placed a call already to a Yankees coach to make sure that i will be at the Metrodome to watch the Yankees win! Andrew also was responsible in arranging and taking care of our initial flights for me ,Jill, and Fredda to start this incredible journey.
ANDREW YOU ARE SUPER SPECIAL TO ALL OF US AND WE ARE SO LUCKY TO HAVE YOU BY OUR SIDE!
THAT BEING SAID I MUST RUN BACK TO JILL AND HANNAH
AND THANK YOU ALL FOR YOUR LOVE AND PRAYERS!!
PLEASE KEEP THEM COMING AND TO QUOTE MY DOCTOR
A FANTASTIC MAN- DR PETERS "I BELIEVE IN THE POWER OF LOVE" and yes "I DO BELIEVE IN MIRACLES"
we need you to write to us as you all give us inspiration and strength.
WE LOVE YOU ALL,
THE STIMELLS!!!

Wednesday, September 29, 2004 5:45 PM CDT

Well, where do I start? Those of you who are following this site likely realize there has been a gap in the journal writing. This is because there has been a great step in our journey. Hannah has been discharged to the Ronald McDonald house where she now snuggles safely with Scott and Jill, plays peek a boo and "hands up" with Grandma Fredda and allows whoever can to put 23 medications a day down a small tube through her nose. It is all a little overwhelming, even for me, a knowledgeable medication giver.
I must say that I was honored to be a part of Hannah's discharge team. The day of discharge was BIG - to quote a man I have grown fond of - you know who you are. There were lots of instructions and all of a sudden we realized that there was no crib and no seat for Hannah back at Ronald. We did the divide and conquer routine - Jill got the meds, I went to Target to get an exersaucer, Fredda asked the angels at Ronald for a crib and a high chair. A brand new crib arrived shortly after asking - a small miracle! Home care was scheduled for 8:30 and so we were out of the hospital, mask and all, waves and goodbyes to all the wonderful nurses, doctors and staff on 4A - you are amazing people. Then the fun began. Deciphering milligrams and cc's, ounces and bottle sizes, priming pumps and cleaning out bags, timing the feeds and stopping them at just the right times to get the meds in, answering Hannah's cries - are you tired, wet, dirty, does your tummy hurt or do you want to be picked up, put down, sung to? It's a triple full time extravaganza. And I miss it. It is captivating, addictive, and all encompassing. I am so fortunate to have Hannah, Scott and Jill in my life.
With that said, I came home and collapsed. My understanding husband and children expect it. There's no sliced bread for sandwiches in the morning and my car is in the shop. It's all a matter of perspective. SO, for all who reads this - remember this daily and keep the perspective. The thoughts, small gifts, CD's, cards, bagels, pizza, spinach balls, kasha, knishes, brownies, mandel bread, trader joes, H&H, Zabars - did I forget anyone? - are all so very appreciated. Minnessota feels far away and alone and these all help connect Scott and Jill. We thank you from the bottom of our hearts.
And, most importantly, Hannah is making progress from a neurologic standpoint. The books say that she is supposed to be deteriorating by now. NO, she is progressing. Hannah claps hands in response to others, she smiles and she most definitely shows preference to who she wants at the time - usually Scott - in fact, it is a funny site to see him hide behind a curtain so that Hannah doesn't know he is there or she will cry and want him to pick her up. It's rumored that he actually fell asleep in clinic while doing just that yesterday.
Well, until next week, I say goodbye and hope that Scott and Jill can find a moment to update this site
Mindy

Sunday, September 26, 2004 7:21 PM CDT

Scott here, i did the sat night overnight and once again Hannah has tortured me!!! She knows how to get me to jump at her every whim!!! Boy am i in trouble , but i will take it. I basically do not sleep at all with her. That is a small price to pay for such an amazing little girl.There is nothing that i would not do for her as you all know. Although sometimes i tell her that Nieman Pick is the least of her worries if she continues to torture me (a big joke). Hannah struggled a bit this morning as she threw up as i guess her increased tube feedings were a bit much.
On a lighter note it is music that has gotten us through this jorney so far, of note i highly recommend Peter,Paul and Mary (ten) years together -greatest hits
Hannahs favorites are leaving on a jet plane that i sing to her all the time the harmony is very soothing, puff the magic dragon, if i had a hammer etc.. Hannah laughs when i sing i dig rock n roll music another great song by them.
I have turned the hospital room into a room of song it is almost a constant broadway show (maybe the longest broadway hospital show ever??) all words are sung not spoken.Ask Betti Ann and i'm sure she will tell you!!!
I also have to say the support and love by all who have continously come all the way to Minnesota has been life saving and frankly overwhelming to us.
We were very sad to say goodbye to our good friend Betti Ann who brought down many goodies from New York (thanks to all at the ocean club -our building at home) we miss you all!!!
Also much thanks to aunt Corrie and uncle Eric
for coming again, we had a great time and as always they were a great source of help and support.
We now eagerly await the arrival of aunt Mindy tonight from New York her 4th go round. She is great with all the nurses and doctors and ofcourse with Hannah.
Just fyi i am alone now with HANNAH and she is crying hysterically(PROB B/C I AM TYPING AND NOT PAYING ATTENTION TO HER, YOU WOULD NOT BELIEVE HOW LOUD SHE IS RIGHT NOW!
Most important is that we may be taking Hannah back to the Ronald Mcdonald house tomorrow, which means we will be leaving the hospital. We then must go to the clinic on an outpatient basis for, labs, transfusions, therapies etc..
If Hannah even develops a slight fever or cold they will admit her back to the Hospital, we will hope for the best.
We hope all had an easy fast and look forward to hearing from you in the guestbook.
p.s Mommy and Grandma Fredda just walked in the room and Hannah is now silent.
Go figure?
until the next journal,
Scott

Sunday, September 26, 2004 7:21 PM CDT

Scott here, i did the sat night overnight and once again Hannah has tortured me!!! She knows how to get me to jump at her every whim!!! Boy am i in trouble , but i will take it. I basically do not sleep at all with her. That is a small price to pay for such an amazing little girl.There is nothing that i would not do for her as you all know. Although sometimes i tell her that Nieman Pick is the least of her worries if she continues to torture me (a big joke). Hannah struggled a bit this morning as she threw up as i guess her increased tube feedings were a bit much.
On a lighter note it is music that has gotten us through this jorney so far, of note i highly recommend Peter,Paul and Mary (ten) years together -greatest hits
Hannahs favorites are leaving on a jet plane that i sing to her all the time the harmony is very soothing, puff the magic dragon, if i had a hammer etc.. Hannah laughs when i sing i dig rock n roll music another great song by them.
I have turned the hospital room into a room of song it is almost a constant broadway show (maybe the longest broadway hospital show ever??) all words are sung not spoken.Ask Betti Ann and i'm sure she will tell you!!!
I also have to say the support and love by all who have continously come all the way to Minnesota has been life saving and frankly overwhelming to us.
We were very sad to say goodbye to our good friend Betti Ann who brought down many goodies from New York (thanks to all at the ocean club -our building at home) we miss you all!!!
Also much thanks to aunt Corrie and uncle Eric
for coming again, we had a great time and as always they were a great source of help and support.
We now eagerly await the arrival of aunt Mindy tonight from New York her 3rd go round. She is great with all the nurses and doctors and ofcourse with Hannah.
Just fyi i am alone now with HANNAH and she is crying hysterically(PROB B/C I AM TYPING AND NOT PAYING ATTENTION TO HER, YOU WOULD NOT BELIEVE HOW LOUD SHE IS RIGHT NOW!
Most important is that we may be taking Hannah back to the Ronald Mcdonald house tomorrow, which means we will be leaving the hospital.We then will go back daily for clinic visits, blood draws, therapies etc..
We hope all had an easy fast and look forward to hearing from you in the guestbook.
until the next journal,
Scott

Saturday, September 25, 2004 10:00 PM CDT

Hannah had a rough start to the day, just a little too much food for her belly but once we stopped the feeds for a bit she seemed to do much better. We are trying to advance her feeds and once that is done the Docs will contemplate writing that discharge order. We are hopeful that it will be sometime this week but as we know things change from minute to minute around here. As of this moment Hannah is sleeping peacefully and we hope that continues throughout the remainder of the night (Dad is doing the overnight) Until tomorrow!

Friday, September 24, 2004 8:51 AM CDT

Friday morning

Last night we welcomed Betty Ann from NY bringing NY pizza. Scott and Jill enjoyed it very much. We tried to keep mom and dad away as best we could although as exhausted as they are they cant leave this little princess for too long.Aunt Corie did a sleep over and Hannah had a great night. Hopefully mom and Dad got some much needed rest. Today Hannah's pressure was slightly elevated but may be due to her pulling out two feeding tubes yesterday and missed some meds. I got to assist not once but twice in this minor procedure of reinserting the feeding tube. I think its great she has the strength to yank it out. This little princess knows what she likes and dislikes.

Last point for the morning- I will probably regret this but I actually enjoy my brother-in-laws singing. In fact, I think everyone does. There have been many times when Scott will sing to Hannah and all the nurses will join in.Thanks for checking in. Until later

Eric and Corie

Thursday, September 23, 2004 8:45 AM CDT

Good morning

Conclusion on Scotts nights its always an adventure this little princess has her daddy wrapped around her finger. The hospital stays are causing some anxiety for Dad. Last night Hannahs feeding tube slipped out and she threw up. It will need to be replaced today as it gets her the meds and nutrition she needs. She has some severe diaper rash so togehter Scott and I undertook filling up a nice bath for Hannah and soaking her cute little bottom. It was a success. I think the ups and down of being in unchartered territory and never quite knowing what to expect add to Jill and Scotts fears. They attend classes to learn the tools they will need to care for Hannah.
What a long strange trip its been and will continue. One thing for sure your posts and encouraging words help get these two great parents through each day.

Till the PM update

Eric & Corie

Wednesday, September 22, 2004 9:25 PM CDT

Uncle Eric and Aunt Corie Here

Just got in and we must say Hannah looks very good. She has had smiles most of the day. She seems to have matured since my last visit (transplant day). Most noticable is Hannah grabbing for her favorite toys especially banging two plastic cups together. The feeding tube seems to be working well as her meds now do not have to be given orally. By giving the meds through the tube they now seem to be getting in her system resulting in normal blood pressure. Last points of interest Jill and Scott look good and Hannah is 9 months today!

Much thanks to our new friend Danielle for bringing corn beef sandwiches. As I conclude Scott is looking over my shoulder being himself we all know what that means.

hoping for a good night until tomorrow

Eric & Corie

Monday, September 20, 2004 8:41 PM CDT

Hi, it is scott once again. Here is the new update!!!!
First just a big thanks to you all for looking and caring so much. It is truly helpful to all of us as we continue forward on our journey.Hannah has had a fairly good day today. She went out in the hall with grandma Linda
and was pretty good with the mask. Hannah definately needs constant attention and loves clapping and snapping.
Her favorite thing to do is to grab two objects either 2 small cups or round rings etc.. and bang them together. That seems to always make her smile, she also seems to find peace when she is resting in my arms and also in her stroller. I must admit that it is a great feeling for me as well when she is in my arms!. We have been working on her blood pressure and trying to get the feeds in her tube increased ,so we can stop the tpn (iv nutrition). The dr seemed pleased with her medical progress and we hope that within a week we will be back at the Ronald Mcdonald house.We will then go back to the hospital for daily clinic, therapies, blood draws etc..
I cant wait to snuggle together with hannah and Jill
once again, what a great joy that will be!!!
Well i hope Hannah will have a peaceful night as daddy is doing the overnight and i know you all will want a good report!!! I have been feeling the pressure to give a good journal. Again i thank you all and please keep writing as we look forward to all your letters and stories. YOU ALL CONTINUE TO HELP US DAILY!
On a lighter note you can't have a better sunday than the giants, jets and yanks winning (especially kicking the sox a__s sorry PEDRO!!! . I do feel very bad for those sox fans who seem to always be teased.I DO MEAN YOU MY GOOD FRIEND JIM CHASE IN RUTLAND VERMONT!! Some things will never change!!!! THERE WILL ONLY BE 1 MIRACLE THIS YEAR AND IT IS IN MINNESOTA (NOT BOSTON!!)
UNTIL TOMORROW,
SCOTT

Sunday, September 19, 2004 10:21 AM CDT

Well this is our last update for this visit. Susie and I enjoyed our time with Hannah and she was a joy to be around. Yesterday Hannah slept and played most of the day, but she ended up being awake and cranky overnight. We've learned that she enjoys Nora Jones and Jim Brickman. The soothing sounds seem to make her more relaxed. Her blood pressure has been normal and even a bit low over the last 24 hours and today her steroids are going to be weaned a little which should help even more. The feedings via her tube are going well she is currenlty on a little more than half of her full feeds which means that she may be off her intravenous nutrition before she goes to the Ronald McDonald house. More stuff for Mommy and Daddy to learn, but it's all good stuff. So that's it. Uncle David and Aunt Susie signing out.

Friday, September 17, 2004 10:56 PM CDT

OK, Daddy has been banned temporarily from writing updates after he has done an overnight:) Aunt Susie and Uncle David insisted that Mommy and Daddy spend the beautiful day today outside of the hospital. Hannah had a pretty restful day. She took many naps (I wonder why)to Nora Jones and did a great job in OT/PT and Speech therapy. Her blood pressure was a little better, but still needs to get under control. Hannah is currently napping to some Jim Brickman and will hopefully have a more restful night. She is still quite congested, but we are hoping that she sleeps through the night. More tomorrow.

Friday, September 17, 2004 6:01 AM CDT

Daddy here bright and early as we had an all nighter last night/this morning! Hannah received a feeding tube through her nose yesterday and it has seemed to really bother her. Her nose is all clogged and she is just miserable! I hope this discomfort of the tube will not last to long and Hannah will adjust,as jill and i had some trepidations about
giving it to her. It was just that giving her (16 meds orally was just overhelming !! Once again i am left just wanting to bang my head against the wall and wishing that Hannah can somehow find some peace. Her cries just tear at me and i just want to be able to take her discomfort away.I wanted to use the suction devise to try and clear her out a bit,however she just needed a platlet transfusion and i could not risk the chance for her to bleed. WELL PLEASE WISH ME LUCK . As i leave you the cries continue!! I am sorry to be so explicit however this is the moment i am in and felt the need to express it!! I know we will somehow get through this moment , however right now its torture for her and myself.
Heres to hoping the next update is a much better one.
scott

Thursday, September 16, 2004 6:41 PM CDT

Howdy all! It's another changing of the guard. Aunt Susie and Uncle David have arrived in the glorious state of Minnesota and are here to make Hannah laugh and smile.

Hannah has had an interesting day. The doctors decided that she needed a feeding tube to give her some extra nutrition. While she didn't like it initially, she has adjusted well and getting her medications has become infinately easier. She's getting an ultrasound of her abdomen tomorrow to investigate her high blood pressure. We'll let you know the results tomorrow.

We're looking forward to spending more time with the Bananna. We're learning that Hannah has a future in percussion as she loves to bang her cups together in time to Susie's singing.

Tuesday, September 14, 2004 9:23 PM CDT

Day +23 we have Melissa our great meds nurse on tonight!Hannah definately needs her as she is now getting 13 oral meds, it is just crazy!!! They have just decided on another blood pressure medicine as they still can't seem to get it under control. Hannah is in good spirits and mommy and daddy are still going to classes to try and learn all the homecare that will be necessary.
We would just like to wish all of our friends and family a very happy and HEALTHY New Year. Thank you all for your tremendous support and kindness.

p.s. Jill also would like to extend a special healthy and happy new year message to her Israel Bonds Family. Thank you all for your support.

Monday, September 13, 2004 9:05 AM CDT

Hi to all it is Scott on monday morning. Just a quick update to fill you in. Once again hannah has been miserable and really did not sleep much at all!!! We spent 4am-6am singing and just plain trying anything to get her back to sleep. i think i played every cd i had (enough disney) i finally ended with Norah Jones. I have been just so frustrated not knowing what to do for her.She is back to not eating at all (this may be due to the fact that she gets about 7 oral meds in one sitting a bunch of times a day. She wants nothing near her mouth!!! Hannah will actually clamp her mouth shut and throw her hands at you, she is definately tough!!! Her white counts plummeted this am TO 2500 FROM 5000 and so did her neutrophils 4400 TO 1800 as we took her off 1 of her growth hormones(i must talk with the doctors as this could be normal?? Her blood pressure is still very high and the doctors are still trying to figure out a plan for this.
This truly is a rollercoaster and at times just really tests your limits. We will continue to just move ahead at the 1 day at a time, its just sometimes 1 day feels like 1 week. I hope all had a good weekend and got to watch some football. We cant watch our Jets and Giants here in Mn
Looks like the jets played well! .Please keep your guestbook entries coming it seems that you all slow up during the weekend. Anyway this was just a little update so you would know what is going on. I will hopefully leave for a while to get just a little sleep (i do not take this for granted anymore!!!!)
Have a great week,
Scott

Saturday, September 11, 2004 8:08 PM CDT

Well, what can I say? Raquel here (Jill's friend)-- I am sitting here with Hannah and Jill and have so much to tell you all. It is now official -- Hannah IS a Daddy's girl. She has had her ups and downs over the past couple of days. Today was a terrible one for Princess Hannah - as nobody is quite sure why she is so uncomfortable - but, the theories range from steroids - which are starting to kick in and make her a little "agro" - to teething, to stomach aches a/k/a gas, etc. All I know is that Hannah now decided - as any Jewish American Princess - to wrap her Daddy around her finger and cry hysterically when she sees him (even when she is calm) until he picks her up, carries her and sings to her. Of course, he complies and then - she looks at all who watched this act unfold - and gives us a big-- smirk! Way to go Hannah.

On a serious note -- Hannah had some encouraging news on Friday. Her blood now tests positive for the enzyme that was missing due to the Nieman Pick. We will not know for some time if this enzyme is present in her brain - which is where it needs to be. But, each step is a milestone and it gave us great cause for celebration - as we weren't expecting these results so quickly and so positively.

Now to address Mindy's weight concerns regarding Jill. Yes folks, Jill is thin - but, not alarmingly so - and it appears to be from stress - as I did witness her eat several full and nutritious meals.

Jill's Mom Linda is also here and I referred to her today as the "Hannah Whisperer" - as she was the one who calmed Hannah down after a day of hysterics.

I must tell you -- everything that you have read about Hannah, Jill, Scott and their families is an understatement. They are truly remarkable and I am blessed in friendship to count this family and Jill and Scott as close friends. Hannah is beautiful and a fighter and for all those wishing her good thoughts and speedy recovery - keep the wishes travelling to Minnesota.

Minnesota is charming. The hospital and it's staff are a godsend and the doctors are thorough and caring. They are very, very lucky to be here. I will say that the hospital is on the campus of the University of Minnesota - and they take their football VERY SERIOUSLY. They even have Univ. of Minn. football "binkies" for babies - THAT'S HARD CORE.

Keep your good wishes coming to Jill, Scott and Hannah and I am now signing off - and returning to New York tomorrow.

Love to all,
Raquel

Friday, September 10, 2004 9:08 AM CDT

Hi, it is Scott after a fairly tough night here at the hospital.Hannah continues to be in some sort of pain,lashing out in her sleep(yelling and tossing). We had removed the morphine drip ,but have had to give her bolis shots of morphine to ease her pain and calm her down. Her blood pressure has remained a real issue and the doctors have struggled to get a handle on this.Hannah has not yet taken any formula or bottle,her food intake has been minimum.
She remains on tpn (iv nutrition)as she needs the calories.. These last couple of days have really been miserable ones for Hannah so i have nicknamed her Les Miserable (only for now).
Jill and i went to a class yesterday to learn how to care for Hannah on our own when we eventually leave fairview hospital. We will be forced to quickly learn to change Hannahs central line tubes,flush them, give her around the clock meds,tap air from her medicines (air is a bad thing to get into your veins etc..! There is so much tedious and important care it just seems so scary!!.
i do know that jill and i will be fully focused and figure out a way and a system to do this. we are still awaiting some test results and are now not sure when we will receive them,we will keep you posted.
Depending on how Hannah feels physically ,we have been given the green light to be able to take her out of the hospital room for a small walk(with the mask only)
Unfortunately we have been told the mask will be needed for up to 1 full year. I dont know how Hannah will do this as i know she will be uncomfortable and want to pull it right off.I guess if she could go through all this she will find a way hopefully to tolerate it as well.
I just wanted to fill you all in on what is and will go on in the near future. please continue to write in the journal as we look forward to hearing from all you. Please remember to let us know a little of what is going on in your lives (the real world) as well.
We will try and get to your requests of new pictures.
please continue to pray for hannah and for our entire family.
We love you all,
The Stimells

Wednesday, September 8, 2004 10:53 PM CDT

OK -Scott is back!!
Just a great big thanks to Mark Greenbaum for making the trek out to Minnesota ,for taking us to the state fair and for being just a great friend and a part of our family.
I know my dad was looking down on us together and feeling the family bond!!! Mark was there bright and early and immediately was focused on Hannah and every word each doctor said. We miss you already!!!
Also just a big thanks to all who have come out here including my pal Rich. I know you will be back soon as Hannah has a way of sucking you right back.
She seems to have a magnetic effect and her eyes seem to
warm your inner most soul.
All of you have served as a great support system.
That being said hannah is continuing along on a positive path. Her counts once again came back up a bit. Her white count to 2.1 and her (nutes) as Dr Peters calls them actually neutrophils were up to 1.7
Hannah still has been uncomfortable at times and we have had a difficult time putting a finger on it.
Her liver has grown a bit more and I am sure is a source
of discomfort. Her chest is still congested and her blood pressure still high.The doctors have now put her on 3 blood pressure meds.
We hope Jill will have an easier time with Hannah tonight as she didn't sleep all that well for me last night.
I have stayed tonight to help her fall asleep and so far have got the job done (dont want to jinx it though!!!!)
I will end saying there is no better feeling than when i hold Hannah in my arms and i know she feels safe and secure. I pray that this will always be and that we can all be together always!!! . We will continue to fight on hannahs behalf-although she seems to be doing that on her own. she is the real davey vs goliath and will win this battle!!! Thanks again for your friendship and love.We can feel it all the way to Minnesota.
We will say goodnight until tomorrow
Love the Stimells
p.s. Happy B-day Haley and Brian please give up gymnastics and get better soon !!

Tuesday, September 7, 2004 5:27 PM CDT

Mark reporting again:
This is my second full day here and it seems as though time stands still as the minutes seem like hours for these parents. Each moment of Hannah's progress is all they can measure time with.
After dragging both Jill and Scott from their daughter for a brief time away to the State fair yesterday, reality sets back in today. Each daily hurdle is measured by what is next for Hannah and her parents to endure. Her comfort level today has been an issue. She is constantly uncomfortable and in some sort of pain. This is probably due to the morphine drip being tappered off. The results of this leaves Jill and Scott with little or no sleep. Her blood pressure is still elevated but hopefully they will be able to level it off.
The second half of this entry is probably one that I will remember for a lifetime. The doctors expressed encouragement that soon they would like to discharge Hannah back to their Ronald McDonald residence here in Minneapolis. The time frame has not yet been worked out but hopefully will be within the next few weeks. Hannah will only be realeased if her nutrophils and white blood count are above certain levels. They both did drop today but still are above the doctor's threshold for release. Their is much more ahead even after the hospital as constant daily clinic visits and therapy will still be needed. The therapy and monitoring of Hannah could be a very long and arduous task. Discharge is however a huge step toward the positive. Both Jill and Scott felt the weight of this with both great emotion as well as a great deal of fear. For almost one month she has been in a controlled environment with unbelievable nurses and doctors (probably the most compassionate and nicest in the country) at her side.
Jill and Scott's families are unbelievable as they constantly monitor this child's progress day to day, minute to minute. It seems like a WWF TAG TEAM MATCH. Each time a family member leaves another one gets on a plane and comes in. Fredda (Scott's mom) left this morning and she is sorely missed, and Linda (Jill's mom) is arriving tomorrow.
Jill and Scott will have to brave this next stage on their own with only family and friends for a much needed support. Her blood was drawn today to be tested to the all important presence of sphingomyelinase an enzyme that was previously deficient and the cause of her disease. The will also be testing her blood to be sure the white blood cells are those of the donor and not Hannah's.
ALL YOUR PRAYERS ARE IMPORTANT RIGHT NOW! This enzyme is imperative to reversing this degenerative disease. Before you go to sleep tonight, kiss your children and pray for Hannah, Jill and Scott. I love this family and it is wonderful to see that so many of you are so commited to Hannah Mollie's well being. This child and her family continue to amaze us with thier courage and the ability to move the human spirit.

Monday, September 6, 2004 9:01 PM CDT

Entry from new arrival on ellis island: Mark Greenbaum
It is truly an honor to be a part of this family and their young daughter as they approach uncharted waters. I feel like writing this journal is like being given an aliah (honor). She is beautiful and seems daily to be improving, her white blood count is 2.0 and nutrophils are 1.5, and if the nutrophils remain over .5 for three straight days she will be able to leave her room tomorrow for the very first time with a special mask. She is having a little difficulty reducing her morphine intake as it as led to a bit of a spike in her blood pressure.
Today, I had the privilege of accompanying Jill and Scott to the infamous MINNESOTA STATE FAIR. We ate everything fried on a stick under the sun. Including bringing back a fried twinkie for Fredda who remained at her Hannah post as we enjoy the livestock, food and festivities. This is truly a special baby and more so a special family. But I knew that long before this child. Scott showed me the Ronald McDonald house that they stay in while here and it made me want to eats BIG MACS on a regular basis. Scott shot a few games of horse and I or course let him beat me, even though he did go 19 for 20 from the top of the key. The strength this family exhibits just overwhelms me and you can not help but to be drawn to this child and her fight.

Sunday, September 5, 2004 10:10 AM CDT

I couldn't resist an update as we got some great news today. Hannah's total white blood cell count is 1700 and her neutrophil count is 1100!!!!!YEY for those neutrophils!!!! Hannah looks wonderful. She is alert and looking for her toys to shake up and down.
I wanted to plug Howie, Jill's dad, and Fredda, Scott's mom, for their loving, unending, tireless caretaking over the past few days. This enabled me to pull Scott and Jill away for 3 hours a day to have a little change of environment and ...even a few laughs. I am so proud to be a part of this extraordinary family. Family and friends have really pulled together to BE HERE in every sense of the word. This is a team effort and I am so proud to be a part of this incredible team. I would bet on this team winning something on par with the WORLD SERIES or the SUPERBOWL. We are tough and nothing's gonna beat us!
And so, with those neutrophils on board, Howie and I are off to the airport.
Until next time
Mindy

Saturday, September 4, 2004 9:42 PM CDT

Thanks for all those prayers - they worked and Hannah's total white blood cell count is 900 and her neutrophil count is 300. This is great news. Hannah is a real fighter. We are hopeful that these cells are indeed the transplant cells coming in and not Hannah's old cells kicking back in. We will know the answer to that in a couple of weeks.
Today's social journal is significant for the following
1. Mindy survived 2 nights and has been punchy all day
2. Fredda and Howie went to Dinkytown and had a wonderful lunch of white tuna without mayo on delicious bread and brought back lots of menus for Scott and Jill to peruse. You know the GAP doesn't make pants less than "0" so Jill has got to start eating. They also located some nail salons and Jill is in desperate need of a manicure.
3. Scott, JIll, and Mindy went downtown back to the GAP where they had to keep the store open an extra hour for us because Scott went crazy. You know they only packed for a week when they originally came out here so they are short on some necessities including socks and warm clothes. Of note, if you buy 5 items full price you get 20% off so all of you GAP shoppers, get going.
4. After shopping Jill had a sushi craving so we went to Ichiban in the downtown area. Hello to Mark the manager who was so kind to us and by the way has a famous father in law, hall of fame football player Dave Casper. What a gentleman he was. We recommend this restaurant highly.
5. A couple of margharitas and sakis later, we came back to take care of Hannah. Hannah loved her bath today and ate lots of pears tonight. Jill is on night duty tonight and should sleep well after those sakis. Mindy and Howie are off to NY tomorrow and things should get a little more boring around here. We look forward to passing the baton to Mark Greenbaum, our good friend, who will be coming in tomorrow. Mark, you have a lot to live up to on this journal web site.
I will miss these guys so much. PLease keep writing. It means so much to us.
LOVE
Mindy

Friday, September 3, 2004 10:45 PM CDT

Night 2 Note: new picture update
Mindy here. Well, it was a beautiful Minnesota day, 80 degrees, sunny and no humidity. The day began with Hannah mounting more of a white count response. Her total white blood count is 500 and her absolute neutrophil count is 200, up from 100 yesterday. This is great news because when Hannah's absolute neutrophil count(ANC) reaches 500 she gets to take walks out of her room - with the dreaded mask ,of course, but at least she gets to go out. At that point the risk of infection with very bad things gets lower and we feel better about her immune response. SO there's the little medical info. Let's all send positive energy for those little neutrophils to be made!
Today Scott, Jill and I went to Lake Calhoun and sat out on a dock on the lake. It was very pretty and although only 4 miles from the hospital it seemed a world away. We had a great lunch of fish tacos and frozen yoghurt and then hit the GAP where Jill has hit a new low in sizes. I didn't know they made clothes that small. She felt so good she ate a whole pizza for dinner. Boy, those Stimells can eat! Apparently, Hannah had some pain while attempting to eat this evening and the morphine was dialed up. She is now sleeping comfortably and I am awake as I just took a 4 hour nap. I am on night float schedule.

For those of you who asked, the address at Ronald McDonald House is:
621 Oak Street S.E, APT. 423
Minneapolis, Minnesota 55454

Please send love our way
Mindy

Thursday, September 2, 2004 9:59 PM CDT

A new sheriff's back in town - Mindy
Well I must say that Hannah is looking cuter than I could have hoped for and Scott and Jill are looking pretty cute too. Spirits are good; Hannah is smiling today was loving her pears. The grown ups were served more eggplant parm thanks to good friends Jack and Angela. Be careful what you ask for on this website - we may be eating eggplant for the next month! Sarah Chase Moskowitz,don't worry about the bagels, I brought them with lox from NY. Scott and Jill are learning the medical lingo and soon will be doing nights for me in the Columbia ER. I already have it all planned out. Seriously, though, they have really risen to the occassion; from not being able to change a poopy diaper on my daughter to being able to manage lines and wires and chemo - WOW, they are awesome. Keep writing - we love reading all of your words of hope and encouragement
Wish me luck and some zzzzs
Mindy
PS We have a knish craving (preferably KNishKNosh)

Wednesday, September 1, 2004 10:30 PM CDT

So it is day +11 and Hannah had a good day. No fevers and she ate a little more baby food. Her white cell count is .3 which means that some cells are starting to appear but the Docs caution us that the count could drop but it is certainly a positive sign that some are starting to appear this early, so we are cautiously optimistic. Hannah also smiled and laughed today which warms your heart! Daddy is on night duty tonight so we are all hoping Hannah sleeps because if not we will all know about it tomorrow.
Oh by the way, one of our care partner volunteers saved the day by bringing us eggplant parm. and I have to say it was pretty tasty. Thank God for these wonderful volunteers!
Hope everyone is geering up for a great Labor Day weekend. Love to all.
p.s. Thanks to Grandma Linda who departs to NY Tomorrow
at 5:00AM. We know you are not a morning person and we all thank you.

Tuesday, August 31, 2004 4:09 PM CDT

From GRAMMA FREDDA
Hannah is an inspiration to each person she comes in contact with,including all of us. Her stamina,feistiness and beautiful disposition are a joy to watch. She is making more sounds and kicking her feet. Right now she is responding to Jill's voice. She ate chicken and gravy today.
As in the past the support of so many wonderful friends and family are a tremendous help
to all of us!!!!!
On a lighter note, we are planning our first sit-com; Scott complaining about lack of sleep, Linda combing the halls of the Ronald McDonald House looking for the vacuum cleaner, Jill finding bargains in Target when given 35 minutes to shop and me boilng eggs at 11:00pm.In addition, just for important geographical information we have not found eggplant parmagian in Minneapolis [yet].We have not given up hope.
That is the important word----HOPE AND INDEED WE ALL HAVE IT.

Monday, August 30, 2004 9:03 PM CDT

Hooray for Hannah!!! she ate her 1st solid food in weeks -peaches. it was just about an ounce but I (daddy ) had a gut feeling she would once again open her mouth and take a try. To me this was a huge step as Hannah's mouth has been sealed shut for days. To me this was a great joy!!! wow how little things can lift your spirits!. Hannah had a fever for the 1st half of today and was cranky, however she seemed to perk up a bit in the latter part of the day. She even flipped side to side almost looking to find her comfort zone in the crib. she is so cute when she turns on her side and reaches out. Jill and I really got excited with the food!!! again our continued motto is 1 day at a time.
We are so fortunate again to have you all following us on Hannah's journey . Your positive love and messages really continue to help us forge ahead . Well here is to Hannah and the power of love. We will continue to keep you all updated as always. Please send us your messages to let us know you have been keeping up with the journals.
Love the Stimells

Sunday, August 29, 2004 8:39 PM CDT

So it is day +8 and Hannah had her first high fever. Her fever reached 104 today accompanied by chills and shakes. It was not a great day but her fever has gone down considerably and she is feeling much better. Every day is an adventure and we are just thankful to get through them!
Our good friend Rich left for New York today and we were all sorry to see him go. Hannah is missing him already!
Hannah continues to lose her hair which is hard to watch because from the day she was born she had a full head of hair, but it will grow back. Well, tomorrow is another day and we will deal with whatever may come our way.
Thanks for checking in and I hope all my train friends are on vacation this week!
Jill

Saturday, August 28, 2004 11:49 PM CDT

hi daddy here 11:50 pm sat night. hannah is sort of sleeping but blurting out some yells almost as if having a bad dream. seeing what she has been through i cant blame her!! she started out today in a playful mood to some extent,but by mid afternoon her temperature rose along with her elevated heart rate and blood pressure. hannah continues to pull at her oxygen tube in her nose and has become quite feisty when you approach her nose and face area in order to put it back in place.we are grateful for that fight she gives.she has even moved around a bit in her hospital crib.hannah continues to lose her hair,
but seems to me to get more beautiful by the day!!!
boy do i love this girl!!!! i hope and pray that we will have a peaceful night. like i said 1 day at a time.
it is 1 week after transplant today. for those of you not aware the transplant is actually not very eventful in that it is like a blood transfusion. it is what the cord blood gives to hannah in a way of cells. post transplant really is the critical time to see how her body reacts.
well we had lots of fun with rich here and were able to enjoy some moments. it is very important to have a great support system. thank g-d for all of you and your well wishes.
until tomorrow,
scott

Friday, August 27, 2004 11:15 PM CDT

Hi from both jill and scott on fri night (also rich.)
Today Hannah's room was transformed into an O.R. Hannah needed a bronchioscopy to determine the problem with her lungs. she was given anestisia and sedation. the procedure lasted about 1 hour and hannah woke up a bit groggy. she also had a fever and it has since lowered. hannah was really poked and prodded by soo many doctors and nurses today its amazing she trusts anyone. we are awaiting the results of the procedure. they have eliminated blood in her lungs. hannah is starting to really lose her hair in the back but remains just beautiful. it is so cute (but dangerous) to watch hannah struggle to pull her oxygen out of her nose. i know that hannah has a tremendous inner strength because she always manages to come through.
jill and i are both so proud of her courageousness.
hannah is now sleeping and that my friends is a great sight!!! you are now updated for tonight
mommy has overnight duty.

now for our in town guest update from rich michals
If I were President I would make it mandatory that every person had an opportunity to visit Minneapolis, Minnesaota. There is a humanness here that I have never seen before. The one square mile that embraces The Fairview UNiversity Medical Center and the Ronald Mc Donald House, could quite possibly be the most accomodating square mile in the U.S. I can assure you all that Hannah Mollie Stimell is in the best hands imaginable. She has the two most caring and loving parents a child could hope for, she has all your thoughts, prayers and well wishes, and a wonderful medical team. As I gaze over at Hannah, she is sleeping so peacefully, I am typing so lightly right now.........she is precious, gorgeous, and simply wonderful, she captures every ounce of your attention at every moment! God bless Hannah, Scott and Jill.

Friday, August 27, 2004 0:19 AM CDT

DADDY IS BACK!! IT IS 12:20 AM IN MINN. FINALLY HAVE HANNAH SLEEPING HOWEVER THEY WILL BE CHECKING HER AT 1AM AS WE JUST GAVE HER BLOOD PRESSURE MEDICINE AS HER PRESSURE HAS BEEN HIGH AND ALSO GAVE HER LASIX TO TRY AND REMOVE FLUIDS.. TODAY HAS BEEN A ROUGH ONE AS HANNAH HAS NEEDED MORE XRAYS. THE PERSISTING PROBLEM IS HANNAHS LUNGS, WHICH ARE A FOCAL POINT WITH NIEMAN PICK AND SIMILAR STORAGE DISEASES. DUE TO HANNAHS CHEMO AND LACK OF IMMUNE SYSTEM AND EFFECTS OF TRANSPLANT THE DOCTORS ARE EXTREMELY CONCERNED. WE ARE VERY WORRIED AND THEY MAY HAVE TO DO A BRONCHIOSCHOPY FRI AM TO TRY AND FIGURE OUT IF THERE IS AN INFECTION,BLEEDING OR A DAMAGED LUNG ALL 3 BEING EXTREMELY SERIOUS. HANNAHS HEART RATE WAS ALSO EXTREMELY HIGH THIS AM AND HAS HAD TO BE MONITORED.
ALL THIS HAS MADE FOR ANOTHER VERY TRYING DAY. WE NOW HAVE HANNAH BEING MONITORED VERY CLOSELY., SHE IS ON A CONSTANT MORPHINE DRIP TO TRY AND KEEP HER MORE COMFORTABLE. WITH ALL THIS HANNAH REMAINS STRONG AND BEAUTIFUL! SHE CONTINUES TO AFFECT ALL THE PEOPLE AROUND HER WITH HER INFECTIOUS SMILE AND LARGE BROWN EYES THAT SEEM TO SPEAK VOLUMES AND PIERCE THROUGH PEOPLES HEARTS.
I THANK YOU ALL FOR KEEPING A WATCHFUL EYE ON HANNAH AND OUR FAMILY. YOUR THOUGHTS AND GOOD WISHES TRULY HELP US
TO GET THROUGH THE DAYS.
MY GOOD FRIEND RICH MICHALS CAME DOWN TODAY AND IT IS REALLY GREAT TO HAVE HIM HERE BY MY SIDE.
WELL AS BILLY JOEL SAID IN ONE OF MY FAV AND RARE TUNES CALLED IVE GOT TO BEGIN AGAIN AND I QUOTE "WELL ITS BEEN QUITE A DAY AND I SHOULD GO TO SLEEP AND TOMMOROW I WILL WAKE UP AND I'LL KNOW THAT IVE GOT TO BEGIN AGAIN AND IT'S HARD, IT'S HARD....
GO LISTEN TO THE TUNE ITS FROM BILLY JOELS COLDSPRING HARBOR ALBUM.
THANKS UNTIL NEXT UPDATE

SCOTT, JILL AND HANNAH

Wednesday, August 25, 2004 10:51 PM CDT

okay mommy here. I thought after daddy scared just about everyone with one of his last updates I should give it a shot. The Docs are still very much concerned with the fluid in Hannah's lungs so they first sent us for a chest x-ray and when that did not show all that much they sent us back for a cat scan of the lungs. Hannah actually got to leave the room twice today but everytime she leaves this room she needs to wear a mask and that does not go over very well. She hates having that mask on her face and fights us all the way but she was very still during the x-ray and cat scan. We will have the results of the cat scan tomorrow. Hannah did require some oxygen today so she is now wearing one of those oxygen gizmos on her face, pulling at it nonstop. Hannah is now resting comfortably probably due to the morphine and melatonin combination but I will let you know tommorow if in fact it worked.
Thank you to everyone for all your support it is truly appreciated.

Wednesday, August 25, 2004 6:27 AM CDT

hi its daddy again at 6:30 am. HANNAH WAS PRETTY MUCH UP ALL NIGHT. SHE SLEPT 10 MIN AND THEN GOT UP. I DID MY BEST TO SOOTH HER AT ALL TIMES BECAUSE THAT IS WHAT DADDY DOES BEST. OH YEAH DADDY DIDNT SLEEP AT ALL ONCE AGAIN! .
I ELECTED TO NOT GIVE HANNAH MORPHINE AS I WOULD RATHER WAIT UNTIL I FELT SHE REALLY NEEDED IT, AS NOT TO GET HER SO HOOKED ON IT. WE ONCE AGAIN WILL NEED ANOTHER BLOOD TRANSFUSION OF PLATLETS THIS MORNING . HANNAHS VITALS FOR NOW ARE OK HOWEVER SHE HAS HIGH BLOOD PRESSURE. SHE IS STILL VERY CONGESTED AND HAS FLUID IN HER LUNGS SOMETHING THAT CAN BE PAR FOR THE COURSE WITH A TRANSPLANT.HANNAH STILL HAS HER MOMENTS WHEN SHE IS HANNAH AND THERE IS NOTHING MORE GRATIFYING AT 5AM WHEN SHE REACHES FOR ME IN HER SLEEP AND SMILES AT ME. IT GIVES ME THAT EXTRA STRENGTH AND LETS ME KNOW WE ARE GOING TO GET THROUGH THIS TOGETHER WITH LOVE AND HER COURAGE. SHE IS A FIGHTER
EVERYONE LOVES AN UNDERDOG!!! JUST REMEMBER 1980 USA OLYMPIC HOCKEY TEAM AL MICHAELS WITH THAT FAMOUS CALL
"DO YOU BELIEVE IN MIRACLES ...YES!!!!!!
THAT QUOTE RESONATES IN NOT ONLY MY HEAD BUT THE HEADS OF MANY AMERICANS. PLEASE STAY WITH US THROUGH
THIS JOURNEY AND BELIEVE AS I HAVE MADE A PACT WITH HANNAH TO BELIEVE AND BELIEVE WE WILL. 1 DAY AT A TIME
IT SEEMS HANNAH IS NOW SLEEPING SHE SURE PICKS WEIRD HOURS TO SLEEP, I JUST THINK SHE EXHAUSTED THE BOTH OF US., THE ONLY PROBLEM IS DADDY IS STILL UP!
I ONCE AGAIN THANK YOU FOR YOUR CONTINUED THOUGHTS ,PRAYERS AND POSITIVE ENERGY.
WITH MUCH LOVE
SCOTT, JILL AND HANNAH

Monday, August 23, 2004 7:40 PM CDT

DADDY'S BACK still a bit TIRED from the no sleep last night.
1ST THING THIS AM WE HAD TO TAKE HANNAH TO THE RADIOLOGIST TO FIND OUT ABOUT HER FEEDING TUBE THAT WAS IN HER NOSE. WELL THIS WAS AN ESCAPADE THAT DADDY DIDNT NEED ESPECIALLY ON ZERO SLEEP! WE FIRST HAD TO PUT A MASK ON HANNAH AS SHE CANNOT BE EXPOSED TO ANY GERMS AS HER IMMUNE SYSTEM HAS BEEN DEPLETED. AS YOU MIGHT IMAGINE AN 8 MONTH OLD BABY GIRL DOES NOT TAKE WELL TO A MASK OVER HER FACE. WELL SHE IS A FIGHTER AS SHE WAS PULLING PRETTY HARD.
THATS WHEN THE FUN STARTED IT TURNS OUT THAT HANNAHS FEEDING TUBE WAS JAMMED UP AFTER THE RADIOLOGIST SHOT THE DYE AND IT BACKFIRED ALL OVER HANNAH. IF THAT WASNT ENOUGH
HE ATTEMPTED TO CLEAR THE TUBE WITH A WIRE (SORT OF LIKE SNAKING A DRAIN. THIS WAS AFTER 30 XRAYS TO SEE IF HE WAS SUCCESFUL AND HANNAH FREAKING OUT. ALSO DADDYS HEAD WAS LOOKING OVER HANNAH UNDER THE XRAY MACHINE AS THE RADIOLOGIST ACCIDENTALLY HIT THE MAHINE AND TOOK AN XRAY OF DADDYS HEAD. ULTIMATELY WE PULLED THE TUBE OUT DUE THE ONCOMING OF MOUTH SORES (MUCASITIS ) WHICH HANNAH IS SCREAMING HER HEAD OFF OVER RIGHT NOW AS I WRITE AND MOMMY TRIES TO SOOTH HER TO NO AVAIL. SHE IS IN TREMENDOUS DISCOMFORT AND HER LUNGS ARE FILLED WITH FLUID. WE ARE NOW GIVING HER MORPHINE AS NO CHILD SHOULD BE IN THIS PAIN. HANNAH IS LITERALLY HOWLING SOMETHING WE HAVE NOT HEARD BEFORE.
I HOPE THE MORPHINE KICKS IN I FEEL LIKE BANGING MY HEAD AGAINST THE WALL TO DULL THE PAIN!!!!!
AMAZING THE MORPHINE ALMOST INSTANTLY TOOK EFFECT. ITS ASHAME THAT SHE NEEDS MORPHINE.
ANYWAY WE ULTIMATELY REMOVED THE FEEDING TUBE AND HAVE OPTED FOR IV NUTRITION AS HANNAH NEEDS CALORIES
THIS OPTION IS NOT THE HEALTHIEST AS IT PUTS STRAIN ON HER ALREADY ENLARGED LIVER.
WE ARE NOW GIVING HER A CHEST X RAY AS HER LUNGS REALLY SOUND VERY CONGESTED.
IT JUST SEEMS SO CRUEL THAT SHE MUST ENDURE THIS.
I WILL NOW ATTEMPT TO SING HER 3 FUZZY MONKEYS SONG.
AND YOU ALL LAUGHED AT ME FOR BEING IN CHOIR.
IT SEEMS THAT HANNAH ACTUALLY LIKES MY VOICE.
WHATEVER IT TAKES THATS WHAT WE DO HERE
WELL YOU ARE NOW UPDATED. PLEASE KEEP ALL YOUR GOOD WISHES COMING.
UNTIL NEXT UPDATE
SCOTT ,JILL AND HANNAH

Monday, August 23, 2004 5:23 AM CDT

ITS 5AM ON MONDAY IF YOU CAN CALL IT MORNING. WE HAVE BASICALLY BEEN UP ALL NIGHT!
HANNAH HAS TOSSED AND TURNED AND CRIED ALL NIGHT. I HAVE BEEN STROKING HER HEAD AND TRYING DESPERATELY TO SOOTH HER
I HAVE EXHAUSTED EVERY OPTION AND CANT SEEM TO HELP HER FIND PEACE. I SIT HERE STRUGGLING WITH HOW THIS CAN BE HAPPENING ALL I CAN DO IS SIT HERE BY HER SIDE AND DO THE BEST I CAN.I AM TRYING TO GET HER MORE MEDICATION NOW.
I PRAY THAT I WILL FINALLY HELP HER FIND SOME PEACE EVEN FOR JUST A LITTLE WHILE. I JUST FELT COMPELLED TO WRITE
SLEEPLESS IN MINNESOTA
WISH ME LUCK
SCOTT

Sunday, August 22, 2004 3:32 PM CDT

WELL,
WE ARE 1 FULL DAY AFTER TRANSPLANT AS IT IS 3:35 CENTRAL TIME. HANNAH HAD A ROUGH 1ST DAY KEEPING HER MOM UP ALMOST ALL NIGHT. SHE HAS BEEN NAUSEUS AND THROWING UP. THEY DECIDED TO STOP HER FEEDINGS DUE TO THIS. DURING THE DAY TODAY HANNAH HAS ALSO STRUGGLED TO FIND PEACE AND SLEEP.
SHE IS FINALLY SLEEPING BUT PROBABLY ONLY FOR A LITTLE WHILE.
HANNAH NEEDED AN X RAY THIS AM AS THEY BELIEVE HER FEEDING TUBE IN HER NOSE(SEE PHOTOS) HAS MOVED FROM ITS CORRECT POSITION. TOMORROW WE WILL TEST IT MORE IN DEPTH WITH A SPECIAL DYE/CONTRAST AND MAY ULTIMATELY NEED TO DO THE PROCEDURE AGAIN. THE FIRST TIME WAS NO PICNIC AS THEY STRUGGLED WITH THIS. WE HAVE BEEN TOLD THAT THIS IS NOTHING AND TO BE PREPARED TO HANG ON. IT IS JUST A VERY EMOTIONALLY AND PHYSICALLY DRAINING THING AND OUR HEARTS BREAK FOR HANNAH. WE PRAY THAT SHE WILL BE ABLE TO FIND SOME PEACE. THANKS AS ALWAYS FOR LOOKING AND CARING ABOUT HANNAH AND OUR FAMILY. YOU ARE ALL PART OF OUR EXTENDED FAMILY AND WE NEED YOUR LOVE AND SUPPORT AS WE CONTINUE ON HANNAHS JOURNEY.
LOVE,
THE STIMELLS

Saturday, August 21, 2004 9:45 PM CDT

WELL ITS 9:45 PM CENTRAL TIME 10:45 FOR YOU EASTERNERS.
HANNAH HAD HER CORD BLOOD TRANSPLANT TODAY AT 2:25 CENTRAL TIME AND WAS FINISHED BY 3:05 PM . SHE HAS HAD HER MOMENTS SINCE. SHE HAS THROWN UP NUMEROUS TIMES AFTER THAT.
WE ARE TRYING TO MAKE HER COMFORTABLE AS POSSIBLE. SHE HAS NEEDED ANOTHER BLOOD TRANSFUSION AS WELL AS A PLATLET TRANSFUSION. TODAY HAS BEEN A VERY EMOTIONALLY AND PHYSICALLY DRAINING DAY. WE ARE HOPING THAT HANNAH WILL FIND SOME PEACE AND SLEEP WELL (ALSO FOR MOMMY WHO WILL SLEEP OVER TONIGHT) I WILL BE STAYING LATE THOUGH.
ITS A BIT SCARRY AS WE DONT KNOW WHAT TYPE OF REACTION HANNAH IS GOING TO HAVE AFTER RECEIVING HER CORD BLOOD.
WE HAVE BEEN VERY TOUCHED BY ALL YOUR LOVE AND SUPPORT
AND THE WARM WISHES IN THE JOURNAL. PLEASE CONTINUE TO MONITOR THE SITE. WELL THATS TONIGHTS UPDATE, WISH US LUCK
AND PLEASE KEEP SENDING YOUR POSITIVE ENERGY AND PRAY FOR
HANNAH AND OUR MIRACLE!!
LOVE THE STIMELLS
FAIRVIEW HOSPITOL

Saturday, August 21, 2004 10:42 AM CDT

finally got hannah to sleep at 1am fri night into sat am
i (daddy did a double shift and slept over hospitol for 2nd night in a row as jill was a bit run down.
hannah threw up at 5am and seemed to be shaking i changed her and soothed her. at 7am i was told she would need her 2nd blood transfusion as her hemoglobin was under the limits of 8 and was a 6.7. hannah then received it and we gave her some mouth medication to try and stop the inevitable mucasitis (terrible mouth sores) she was not even able to hold down the 1 swabbing that i gave her and it came up. we then changed her and her sheets. i then continued with reg mouth swabs which must be done 4x a day. hannah has been cranky this am and seems to feel warm. as i am writing hannah is throwing up again! its just so unfair and painful to see our beautiful daughter suffering so much. the pain for all of us is unbearable
i wish we could just make this all go away as we are all living the nightmare we cant wake up from.
well hannah should be receiving her transplant by 1pm central time (2pm eastern time)
THE TRANSPLANT ITSELF IS DONE THROUGH HER CENTRAL LINE WHICH HAD BEEN PLACED IN HER THROUGH HER JUGULAR VEIN AND PLACED JUST ABOVE HER HEART ON LAST WED AUGUST 11TH AT 12PM
THE CENTRAL LINE HAS CONTINUED TO PROVIDE HANNAH WITH HER CHEMO ,ANTIBIOTICS,BLOOD TRANSFUSIONS, MEDICINES ETC..

THE TRANSPLANT WILL BE AN INTENSE OUNCE OR SO OF BLOOD CORD WITH A SOLID DOSE OF CELLS AND A 6/6 MATCH FOR HANNAH. IT IS FAIRLY UNEVENTFUL IN THAT IT TAKES ABOUT 30 MINUTES AND IS ADMINISTERED THROUGH HER CENTRAL LINE.
IT WILL BE THE EFFECTS OF THE FOREIGN BLOOD CORD DONOR THAT WILL MAKE HANNAH TREMENDOUSLY ILL. ESSENTIALLY WE WILL NEED THE BLOOD CORD TO BE ACCEPTED BY HANNAH AND SOMETHING CALLED ENGRAPHMENT TO TAKE PLACE. ANY WAY PLEASE PRAY FOR US ALL YOUR MESSAGES AND KIND THOUGHTS TRULY DO HELP US ESPECIALLY BEING SO FAR FROM HOME AT THIS MOST DIFFICULT TIME. I PRAY THAT G-D WILL GIVE US OUR MIRACLE AND ALLOW US TO SOMEHOW GET THROUGH THIS. WE WILL KEEP YOU UPDATED
LOVE SCOTT, JILL AND HANNAH

Friday, August 20, 2004 7:35PM CDT

Uncle Eric left at 5:00am this morning and he truly was a big help. We look forward to seeing him again along with Aunt Corie. Hannah has one more dose of chemo tonight at midnight and then sometime tomorrow we expect the cord blood to arrive. Wish us luck!

Thursday, August 19, 2004 8:35 PM CDT

Hannah slept well last night and that may be attributed to all the meds they gave her. The poor girl is on so many different drugs. Well the good news is that she gets one more dose of ATG at midnight and then only two more tomorrow. The bad news is that although chemo finishes tomorrow the two weeks following transplant might be the worst. Apparently post transplant is when the mouth sores, hair loss and nausea really come on strong. Oh boy we cannot wait!
Well, hopefully Hannah will sleep for Dadddy tonight, he is on duty!

Wednesday, August 18, 2004 6:39 PM CDT

Hannah had a bad night last night. She is very stuffy and uncomfortable, finally at about 5:00AM they gave her something to help her sleep. Hannah had an ultrasound today and we are awaiting the results. They started her on the drug ATG which is another immune suppressant. She may develop flu like symptoms and become even more miserable. She receives another dose at midnight. We are on day 6 of Chemo counting down until transplant day. We hope tonight goes a little better, wish us luck
Hannah has developed her first fever which is most likely from the the new chemo drug but they are doing labs and cultures to check.

Wednesday, August 18, 2004 5:49 PM CDT

Saturday, August 14, 2004 7:17 PM CDT

Hannah is on day 4 of her Chemo.

Friday, August 13, 2004 11:34 PM CDT

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