April 2009


April 30th 2009 – I know it has been 6 days since I last wrote. It has been 236 days without Jacquie.  The last week has been difficult. So much going on, and all I kept thinking to myself was “why can’t I just go to bed and not have to deal with all this”. Each event we attended was a painful reminder of why we were there.  Last Friday, Madison was incredible at her awards ceremony. She stood up and read her “WOW” Jacquie story with such poise and confidence.  It was a wonder to watch someone so young, captivate an auditorium filled with people.  Please, if you have not read her story yet, take a few minutes to read it.  There is a link on the home page.  It will make you smile and cry, but mostly it will make you know that Jacquie really did make a difference in many lives. On Sat., we went down to Geneseo for the American Cancer Society’s Relay For Life.  What an AMAZING job Sadie and her committee did to make that event happen.  It was so bittersweet being there.  Last year, Sadie called Jacquie while we were in NYC and asked her to speak at this years Relay. Jacquie said she would, but then admitted to me after she got off the phone, that she was nervous about speaking in front of so many people.  I told her that she would be just great, and that the audience would be hanging on her every word.  Well, “somebody” didn’t give Jacquie her chance to speak.  “Somebody” denied Jacquie the chance to share her story, with all her fears, her ups and downs, and her successes, with everyone who came to support the survivors, the fighters and those to be remembered.  But Jacquie, you had the only person in the world who could take your place, speaking for you.  Your loving brother.  TJ spoke for you, on behalf of you, and to you.  He was so very wonderful.  It was so silent in that gym, everyone was  listening to his every word.  Looking around as he spoke, most everyone was crying, and nobody was talking.  It was unreal to be with so many young people and not have anyone talking during a speech.  TJ’s words were from his heart, and his pride in you came through in every word.  His love for you touched each person there, and it was so plain to see how everyone’s heart was breaking for his pain of being without you.  I am  trying to talk him into posting his speech on the web site so everyone has the chance to read it.  Your SDT sisters were there, so many of them, to support you and relay for you.  I know you are as proud of them as we are.  Jacquie, you are blessed with some truly wonderful, “forever” friends.  We had the opportunity to meet all three of the Geneseo students who have given a stranger a chance at life, by being bone marrow donors.  Mae, Jamie and David- we are so proud of you and we know that what you have given unselfishly has given someone just like Jacquie, a chance they wouldn’t have had without you.  Thank you.  To all the wonderful friends, we thank you for the hugs, the prayers, the support and the love you gave us to help us make it through the “Remembrance Ceremony.  Sadie, through your hard work, you and your committee raised over $70,000.  Someday, when there is no more cancer, you will know that your efforts helped to make that possible, and you helped make Jacquie’s dream come true. Sunday was the “Home Parties Party” at the gym, and we were very pleased with the turnout.  Many people came to shop and have a look at what was available.  We don’t have a total yet for the amount of money raised, but we do know that many more people are aware of Jacquie’s story and what her Foundation is trying to accomplish. We want to thank everyone who helped make the event a success, by helping to set up, clean up, bake, and help out in the “Tink Shop”.  Once again, we are grateful to the wonderful family and friends who make Jacquie’s Foundation events so much more than we could hope for. Monday night, the Red Robin Restaurant held it’s first Cruise Night.  TJ’s friend, Joe, made arrangements with Red Robin, and Jacquie’s Foundation will recieve their half of the 50/50 split they will hold at each cruise night.  There were 64 cars, all makes and models.  The restaurant also made it possible for a waitress to be available for the cruise people, so everyone was able to order foood and eat outside with their cars.  It seemed as though everyone enjoyed it and is looking forward to this Monday night’s cruise.  The man who one the 50/50 donated his share back to the Foundation, so the total was $212.00.  We really appreciate was everyone there is doing for us, so if you get a chance, please come up for the cruises- look around at the great cars and have something to eat. They think “car people” are great. We’ll show them that “The Jacquie Hirsch For A.L.L. Foundation” people are pretty great too. We need to ask everyone to say a prayer for Mike and Matt, who died in the plane crash on Tuesday, in Ohio.  Torey and I went to Williamsville North with Mike, and he came to pay his respects to Jacquie.  TJ’s friend, Lauren, was engaged to Matt.  It is hard to, once again, know that families and friends will be going through what we are.  The unfairness of it all continues to sadden and anger me.  I cannnot understand why.  I cannot understand good people keep being taken from us, while others stay here on earth only to destroy other lives. I cannot understand why we must always be saying goodbye to those who still have so much to give and so much to offer our world.  Why? My Jacquie, “A daughter needs a mom to encourage her to laugh as often as possible”. My Jacquie, I still laugh, but it’s not the same.  My laughter is no longer shared with you.  Sometimes I laugh when I remember silly things we did or things that happened.  I remember what we were doing that made me laugh. And then I cry.  I cry because I miss hearing your laugh.  I miss laughing with you.  I miss listening to you and TJ laugh while you watch “Family Guy”.  I miss all the little things that made you laugh and filled you with joy.  I miss you.  I miss the way your nose crinkled when you laughed real hard.  I miss the way you would try to hide your smile behind your hand when you didn’t want anyone to know you were about to burst out laughing.  I miss you. I miss e-mailing jokes and funny stories to you at school. I miss you. Please stay with me, I  know you know how much I need you near me.  We all love you so very much, and we want you never, ever to forget that.  You are still our “four” and you always will be.  You live in my heart and my mind, and you always will.  I will love you forever and ever and always.  Love, your mom


April 24th 2009 – Yesterday was TJ’s birthday, he is now 27 years old.  It’s hard to believe that so much time has gone by.  It seems as though he was just a toddler. He is such an incredible person, and we couldn’t be prouder of the man he is.  Jacquie thought that she was the luckiest sister in the world to have him for a brother.  When she was younger she followed him around and tried to do everything he did. He was so patient with her.  He taught her things, some not as helpful as others, but he was willing to have her as his shadow most of the time.  He read to her, and yes, even sang to her.  He shared his “bed-tent” with her and let her sleep with the nightlignt on when she needed it.  He was always so generous with his praise for her accomplishments, and wasn’t afraid to show her how much he loved her.  As they grew older, that never changed.  He would always give her a kiss goodbye, and tell her he loved her.  When he left for college, he left his friends in charge of watching out for her, keeping an eye on the boys who might be interested in dating her.  That, as you can imagine, didn’t go over too well with Jacquie, but she understood.  They both were very protective of each other’s “significant other”. and neither was afraid to let the other know if their standards weren’t being met!  TJ looked out for Jacquie, and she, for him. They had wonderful times together, and shared some incredible memories in the 23 1/2 years they were together.  When Jacquie became ill, TJ’s first thought was “What can I do to fix this?’, and he was relentless in his drive to find out as much as he could about her disease and her need for a bone marrow transplant.  He worked so hard to set up the Foundation, fundraisers and bone marrow drives.  While we were in NYC, he surprised her with the web site.  Jacquie cried.  She couldn’t believe what he had done for her. She told me “He must love me a lot to do all this work for me”, and I told her she was so right.  Now, TJ continues to work hard for her, carrying most of the load for the website upkeep and the fundraisers.  He is starting his new building construction for his new business. Jacquie was going to be his secretary.  They used to joke around about it, and then one day Jacquie said she was quitting because she wasn’t getting paid enough!  They both laughed so hard, and sounded so “normal”.   She was, and I know still is, so proud of him.  She knew that he would be able to accomplish whatever he set out to do.  I know that it is hard for TJ, being without Jacquie.  But he is focused on making sure that her life is never forgotten and that her Foundation grows to be all it can be, until we no longer need the research because a cure has been found. A year ago, we were all together, celebrating TJ’s birthday, going to Jacquie’s first movie outing since her diagnosis, and then shopping.  New York City wasn’t “home” but we were together so we made it our home.  Four.  Our family.  Together. TJ, Jacquie will always be in awe of you, and will continue to learn from you, just as you say you are still learning from her. You gave her strength, hope, joy, happiness and so very much love.  You ARE her sentinel, just as Jim told you you would be. She told me that you always were he sentinel, and how very much she loves you.  TJ, we love you so much and we are so grateful that you and Jacquie had each other, and always will. My Jacquie, my beautiful daughter- the weather is getting warmer and I’m thinking of the plans we had made for this summer. I am missing you so much.  Tonight, we are going to Madison’s award ceremony for the story she wrote about you.  TJ put it on the web site, and I hope everyone has read it.  She did an incredible job- what an honor to you. Tomorrow, we will be going down to Geneseo for the Relay For Life that is being dedicated to you and Megan- two lives that were taken from us too soon. I think that is going to be very difficult being back there without you.  You were supposed to go with us this year and walk the “survivor’s lap”. Why aren’t you going to be there?  Sunday is the Home Parties Party at the gym and we are planning to raise more money for your Foundation. We WILL make it a success.  And guess what- the “Tinker-Ball” tickets are on sale!!!!!!.  Jacquie, we are going to make you so proud, just you wait and see. Remember to stay with me, don’t ever leave me because I need you. If you can, find a way to visit me.  If I could only see you or touch you or talk to you. I miss you, my daughter.  I will love you forever and ever and always.  Love- your mom, “Tink’s mom”


April 18th 2009 – It has now been 32 weeks, 224 days.  It still seems not real, after all this time it still feels like a nightmare that we will all wake up from.  And when we wake up, Jacquie will be here, standing in front of us smiling and loving life.  Now that it is spring, it should be a time for all things new.  New flowers, trees, baby animals and new discoveries. It is going to be hard discovering what spring is like here at the new house without Jacquie here to share it with us.  Last spring, when we were in NYC, she talked all the time about what things were like at home, and how much fun it would be “next year” to plant flowers, have patio furniture on the deck and have cookouts, have her friends over for bonfires, watch the deer and other animals that live in the woods, and maybe even have a hot tub she could relax in.  Once again, so many plans that will not happen. I thought that spring and the warmer weather might make things a little easier, but I am beginning to realize that each change of season, each “anniversay”, each  new day will bring the same sad feelings. I know we say things like “oh, the sun is out today, Jacquie must have sent it to us to reming us that she is always here”, but it doesn’t help much.  When I look around and see other young woman who really are still here, I still feel so sad and jealous.  Maybe I always will. April 16,2008 was Jacquie’s “anniversary” date for her first re-admission to Sloan Kettering post-transplant. She had recieved her Immunoglobulin shot 5 days before that and had been running a low grade fever the whole 5 days since the shot.  Finally, they admitted her and she was in until the 22nd.  Those 7 days were so difficult for Jacquie.  She was more that 50 days our of transplant and halfway to her “100 days I can go home to Buffalo” date.  This admission was hard, too, because the weather was getting warmer and she was starting to realize that her summer would not be spent as she had planned and hoped.  Jacquie knew this admission would not be the last, that re-admissions for fevers and other “bumps in the road” would continue to occur.  If you only knew how hard she tried to stay positive and optimistic, and how it broke our hearts to know what was ahead for her.  We are so very proud of the way she dealt with everything, we still wonder where she found the strength, physically and emotionally, to keep moving forward every day. Why couldn’t it have been me? “A daughter needs a mother to show her how to honor her life.”  We know you didn’t have time to do this, so we are doing it for you.  Every minute of everyday, your family and friends honor your life.  We honor the person you are, the joy you gave to all around you, and love you gave us all.  We honor the teacher, friend, mentor, “sister” and BFF you were to so many who love you.  We honor the way you lived and the way you taught us to live.  We honor the courage and bravery you showed us all, each and every minute of your fight.  We honor the love we have for you that will NEVER die, but will grow stronger everyday.  At your “Tinker-Ball”, we will honor all the memories of you and we will show you how very thankful were are that you shared your life with us. Please say a prayer for Marcia, Greg, Owen and Ian, and all the other who are still fighting for their lives. My Jacquie, I will love you forever and ever and always,  and I DO BELIEVE that i will see you again someday. Love, your mom


April 13th 2009 – Another Saturday has gone by, another “anniversary”. A year ago Sat., April 11th, you had reached the “50 days out of transplant” milestone.  What a great day to celebrate! I remember how excited everyone at Hope Lodge was, and dad brought balloons that said “50” on them.  We were so optimistic- your counts were doing ok, your appetite was improving and your weight wasn’t going down anymore. We had been told by many people that “50” was a good indicator, and although things could still go wrong, we should feel good about Jacquie’s progress. And we did feel good about it. All the bumps along the way seemed small compared to what we saw other patients going through.  We knew we were far from being “cured”, but we still had a fighting chance. Jacquie continued to amaze all of us. I know that every night after she had gone to sleep, I would just stare at her, watching her sleep and listening to her breathe.  I wondered how she managed to be so positive, how she managed not to scream and cry at the injustice of it all.  We always knew that she was special, but never knew how much until she was forced to show us. I would lay in bed and know deep down in my heart, that I would never have the courage she did if it were I faced with the leukemia. I learned so much from her during this time, and I wondered why someboday would do this to her.  And here I am today, still with my question unanswered. TJ was out of town yesterday, and I missed him so much as I always do when he is away. But I guess that was a good thing, because I could pretend it was just another Sunday. We didn’t have to do anything Easter.  I gave Jacquie a card, and I read it to her, but we didn’t have to sit down at the table with an empty chair and too much food for only three people. I want to be able to “celebrate” important holidays with Torey and TJ, but it is still to hard to know that our Jacquie isn’t here with us to celebrate.  It is so wrong to have to be without her, and yesterday the urge to spend the whole day in bed was so tempting.  “A daughter needs a mom to make sure she always recieves mail”.  When TJ and Jax were away at school, I would send them mail, or bring them cards and silly little gifts at least a couple times a week. I wanted them to know I loved them and missed them and that they were always in my thoughts and my heart.  I thought it was important for them to know that even though they were away, our family was still whole.  Jacquie and TJ will continue to recieve the cards and letters until I am no longer here to send them.  They will always know that no matter where they are, no matter how far away, our family will forever be just that- our family.  It will be four, not three, and it will be whole, not broken. Somebody took Jacquie from us, but that somebody will NEVER take our family. To the Ciao Bellas, we are glad your vacation in Hawaii went so well.  We so wish that Jax had been able to go with you, but we are grateful that you had her with you  in your thoughts.  I am sure she was so proud of all of you. My Darling, I know that all my wishing won’t bring you back to us. But I will keep wishing, because that is all I want.  I want you to remember that we love you, and we miss you, more than we could ever find the words to say. There is still so much pain and grief that we feel.  And although you taught us so much about courage, our courage fails us when it comes to living without you. That is something that we will have to learn in time.  For now, we go day by day, and find ways to honor your memory by trying to live as you would want us to. Be happy, my Jacquie. Be without pain and suffering. Please remain with me, so that I feel you near me, helping me through each minute of each day. I will love you forever and ever and always, my Jacqueline Elisabeth. Love, your mom


April 8th 2009 – This morning I am remembering where we were a year ago, and what we were doing.  We were still in NYC, and Jacquie had a clinic appointment.  I remember how every time she had to go for bloodwork checks, I would be so afraid that they would tell us the leukemia was back. It was so hard not to let Jacquie know how scared I was.  I am very sure that she was thinking the same thing, but both of us must have thought that if we don’t say the words outloud, then it wouldn’t happen.  But that day, the clinic news wasn’t bad, and although her counts had dropped and she had to have the GCSF shot, she was still leukemia free.  After the clinic visit, Jacquie was feeling well enough that we could make a quick stop at the Gap store near Hope Lodge.  We had 4 new baby gifts to buy, and we had such a fun time picking out baby outfits.  Jacquie was so cute, she would pick up an outfit and say “OK, we’ll get this one”, and then she would spot another one and say the same thing.  She had such a hard time deciding because everything was so cute, and she wanted to buy it all.  I think she felt it was her job to be sure the little girls were off to a good start in the wardrobe part of their lives. We talked anbout how she would dress her children when she had them, and how they would always be “in stlye” with the latest in fashion.  We talked about how much fun we would have shopping together with her children.  And of course, when we were done shopping, we would go out to eat.  What happened to your dreams, My Jacquie? “A daughter needs a mom to teach her to care for her children”.  Our Jacquie was born knowing how to care  for children.  Her love for children showed in everything she did with them.  Whether it was teaching them in school. gymnastics, swimming tennis, or just playing with them, I don’t think anyone who watched her could ever doubt that children would always be a very important part of her life.  She would have been the most incredible mom.  I am so very sad and angry that she didn’t have the chance.  I am jealous of women who are grandmothers.  I think about all the plans and dreams we talked about and I wonder why Jacquie was not allowed to see them come true.  WHY?  Why are bad people allowed to live and good people have to die?  Why, when there are so many awful people in the world, who offer nothing but pain and sufering to other people, do the ones who are good and kind and loving, have to leave us?  WHY???? Joe, we thank you for your beautiful message, I keep re-reading it hoping it will take some of the pain away. The words hold a great deal of meaning and I hope others who are on the same painful journey we are on, will be able to take some comfort in your words as well. My Jacquie, another day without you, another day to wonder when I will see you next.  I need to keep telling you how much I love you and miss you so that you will never wonder or never doubt it.  I need to keep asking you to stay with me and help me, help me keep BELIEVING that I can keep doing this without you.  TJ and your dad  are just as lost as I am, and all “three” are so very sad that our “four” is not here with us. I HATE the empty chair!!  Be happy, Jacquie, and remember that you are with us always, that your home is my heart and you will live there always.  I will love you forever and ever and always, love- your mom


April 4th 2009 – 210 days, 30 weeks. A heartbeat, a lifetime. We miss you so much Jacquie, each day remains a struggle to keep moving forward.  For you, we do, but we wish we didn’t have to. I want you to know how proud you should be of your dad and TJ.  Thursday night we had to go down to Roswell for the Ride For Roswell Kick-off.  It was heartbreaking to have to walk through those doors again.  All the horrible memories of the night we walked through them with you, your life in peril.  And each time, thereafter that we walked through them, the unfairness and uncertainty of life was so evident. Thursday night was a reminder that life is NOT fair, that prayers don’t get answered and whoever is in charge of our destinies, made a mistake with you. Somebody was wrong to take you from us.  Somebody should have known that our lives would never be right without you here.  Somebody should have given you the chance to make your dreams come true.  But somebody didn’t.    Your dad did a wonderful job for you.  His speech was great and his presentation- perfect. The people there could see how very much you are loved and missed and how very much we need to keep demanding that a cure be found.  TJ was given many compliments on the website- so many people told him how impressed they were with it, and how much his love for you shows through his gift to you.  Everday, when I look into his eyes, I see you in them and how he loves and misses you.  You two are the very best part of your dad’s and my lives.  How very blessed we are to have a brother and sister who love each other the way you two do.  Thursday night was another gift to you, from them. I couldn’t even count all the nurses and Roswell employees we saw, who took care of you, knew you or just knew of you.  Many of them stopped to tell us something special about you, something they remembered, or thought about, that made you special in their eyes.  You will never be forgotten at Roswell, and you left a little part of you with each and every life you touched.  They are better people for having met you, and you gave them a reason to BELIEVE that there is goodness in life. Please say a prayer for Penny. My Beautiful Daughter Jacquie, today, as with all Saturdays, will be a struggle.  I have things to do for your Foundation and for your “Tinker-Ball”.  I wish I could say I will enjoy doing them, but I won’t.  I won’t because of the reason why I have to do them.  It would be different if you were here planning this with us, if we were doing it in your honor.  I hate doing things in your “memory”.  I hate that you are not here to help me with your wonderful advice on all things concerning social activities.  I hate that we all will wonder, “are we making Jacquie proud?”.  I HATE that you are gone from us.  I still need you , I still need to know you won’t leave me.  You will be my daughter forever.  In my heart, you will always be that little girl, and then young woman, who was full of dreams, imagination, incredible potential, and the ability to bring joy and happiness to those who were lucky enough to  enter your life.  My Jacquie, you took my heart the day you came into my life, and you will have it forever.  With my love forever and ever and always,  your mom


April 2nd 2009 – Good morning,  My Jacquie.  Thank you for the sunshine this morning, I think we all need it.  Yesterday was a very hard day, not just because of the “normal” difficult times, but because we had to go to Sean Patrick’s to go over the plans for your “Tinker-Ball” Formal with Susan.  Going back there was hard, too many reminders. Memories of the last time we were there for the brunch after your service.  Memories of the stories you would tell when you came home from working there. Oh, the stories you would tell us!  We laughed until we cried sometimes, they were so funny.  Remember when you first got the job there?  You were going to be a bartender, like at the IB, but you needed a different clothes than what you wore at the IB.  So we went shopping for “Big Girl” outfits, instead of “College Girl” outfits.  We had so much fun, you tried on dozens of pants and tops, until you found the ones that were just right. You looked so beautiful.  And you were so happy to be working there, you said how wonderful the staff and the clients were to you.  You mentioned that they didn’t get as rowdy as the IB group, and we laughed at that, because you said no one gets that rowdy!  You made us so proud, so many people told us what a hard worker you were and how well-liked.  They would tell us about how you were always happy and everyone LOVED your beautiful smile. And it would make our hearts burst with pride, because we already knew that, but it was nice to know others did too.  We will have a wonderful “Tinker-Ball” for you.  Sean has done so much already, we cannot believe what he is doing for you.  And Susan and her staff will make sure this event is the very best it can be.  You will be proud of all of us, just as we have always been so very proud of you. Today, we are going down to Roswell for the Ride For Roswell Kick-off.  They have asked someone from the Foundation to speak, and your father is going to make a short speech.  He will talk about you and your Foundation, and he will make people understand that we cannot continue to let these cancer take more lives.  The pain we live with everyday cannot be allowed to take over more lives.  I want people to know that your life was a gift to all of us, and to have it taken away is unbearable.  WHY couldn’t we save you?  WHY did you have to get sick?  WHY does this have to continue to destroy lives the way it has our?  WHY WHY WHY??????? Please say a prayer for JoAnn’s sister.  And please say a thank you to Mae, for giving a stranger a chance at a new and healthy life.  Mae, there is no greater gift that you could have given to Jacquie or us, than the gift of life you gave to your recipient.  You are a very special young woman, and we are grateful to you for giving in Jacquie’s memory. Thank you so very, very much. “A mother needs a daughter to show her that life needs smiles to make the sunshine”. My Smiling Daughter Jacquie, your smile is your legacy. Your smile made the darkest days bright.  Your smile let the world know that life was good.  Your smile told all of us that our lives were better for having you in them.  Your smile told us that we were loved by an Angel.  My Jacquie, today I will cry, but I will also smile, because I will remember your smile and what a gift it was to be on the recieving end of it.  Please stay with me, guide me, help me and let me me you are with me always. I will love you forever and ever and always.  With all my love, mom