September 2008
September 29th 2008 – Early am, Yesterday marked the one year point from when our lives changed forever. Right now a year ago we were admitting Jax into Roswell and the first round of chemo would start at 9pm this evening. I wish we were still in the fight, I knew exactly how I had to be and I knew what had to be done. I first want to thank so many of our loyal Jacquie for ALL site readers, friends and family for all your love, kindness, and support over this past year. The cards, calls, e-mails, posts, donations, and jacquie stories have been incredible. Sharon, TJ, Jacquie, and I are forever grateful. It is great to hear how Jacquie influenced and had friendships with so many. I know her smile and laugh made me melt. I spent over five hours outside last night burning all the trees and brush that was left over from clearing behind our house to make a beautiful area for Jax to go to recuperate, her own park. The yard leads up to a creek and I of course had big plans, I shared them with Jax early on because I know after she finished her fight she would need a retreat place to go. Little did I know that I would be spending a lot of time back there searching the sky to talk to Jax, instead of sitting outside with her talking together. The fire was huge, so I’m sure she knew where our house was from way up above. As I keep piling it higher, with sparks rising up 30-40 feet, I keep thinking how cancer deserves to burn in hell. With that thought I really piled it high. I keep trying to understand what Jax would want us to be doing, how she would want us to go on, how we need to live each day. It is just the hardest thing I’ve ever had to do. The feeling of emptiness and loss is so great, the thoughts of her unbelievable fight and the courage she showed each and every day was unimaginable. I am so deeply proud of her. I am also proud of Sharon and TJ. They too are trying so hard to live each day so Jacquie will in turn be proud of them. I talked to you a lot last night and again this morning Jax while burning. I could have fought to the ends of the earth and forever with you. I am searching for the way and you can count on me, like always, to find that way to fight just as hard and as long without you physically here. I’ll just need more time to learn how, keep teaching me, my Jacquie Hirsch. I know that you know how much I love you, because I told you often, but, I never told you how much I would miss you, because I never thought that I would have to. I REALLY MISS YOU JAX !!!
Love forever, Dad 
September 28th 2008– Was is really only one year ago today that we heard those words “Your daughter has leukemia”? How can it be that it hasn’t really been forever since the doctor told us the words that would eventually lead us to where we are today. We had such hope, such faith and we all believed with all our hearts and souls that Jacquie would be one of the survivors. Jacquie was going to be one of the ones who defied the odds and proved the doctors wrong.  How could she not make it- we had so many hundreds of people all over the world praying for her and believing in her. What happened?  Why, after all she went through and the fight she put up, didn’t she become one of the ones who got to hold the white balloon at the “Light the NIght” event in Rochester on Friday night. Why were we holding a gold one, one that meant we had lost a loved one to leukemia? Why weren’t we the ones partying with those who had loved ones who were now “cancer-free’? I thought the event was awful and a huge mistake to attend. And I hated being with all those people who didn’t have to make the walk crying for a daughter who was not walking with them.  “A daughter needs a mom to provide her with memories that will last forever.” our forever was too short and I need you Jax, because I wasn’t done making memories with you. I BELIEVE that someday we will be together to make more, but I wanted those memories for now. I love you Jax, forever and always. Your BFF, mom
 
September 26th 2008– Thank you all for the phone calls, text messages, notes and cards. Each day we hear from people who want to send their sympathies, share “Jacquie stories”, or let us know they are thinking about us. We are so very grateful to all of you. Every call, message, note or card lets us know we are not alone in missing Jax. We’ve heard such wonderful things about her from people we never had the chance to meet- friends from Geneseo, the IB, her sorority, the school she was student teaching at and just people who knew her through a mutual friend. We have also heard from some of her teachers from long ago- Mrs. Delemere, Mr. Ronald, and Mrs. Pace. We have heard from nursury school friends and elementary school classmates from when we lived in Cheektowaga, and she was at Cleveland Hill Elem. School. It is wonderful that so many remember her. The most amazing thing is that almost everyone mentions that what they remember most about her is her smile, that is the first thing that comes to mind when they hear her name. As I look through the countless photo albums and pictures we have of TJ and Jax, I see that she is always smiling and laughing. I hope and pray she is still smiling and laughing in heaven, because I’m sure she is giving the other Angels lots to smile about. I know I haven’t been good about staying in touch, and returning calls, and e-mails. I’m sorry. I’d like to say I’ll do better, but I’m not sure when that will be. But I really do appreciate it so very very much. Just knowing that when I am ready to reach out, there will be people there for me, means so much. For right now, I seem to be needing some time to myself. Tonight Torey, TJ and I are going to Rochester to do the “Light the Night Walk”. I think it is going to be very hard, because I thought the next walk we would be doing would be an “In honor of”, not an “In memory of” and Jax would be doing it with us. I miss walking laps around the halls at Roswell with my BFF. I miss talking with her when we walked and then we would forget what number lap we were on and I would tell her we had to start at one again. She would just roll her eyes at me and say “I don’t think so”, in that Jax tone of voice. I wish I could have her waking with me again. So tonight, I’ll go and walk for you, Jax, even though I’d rather be here at the house, close to your things, your pictures, and you. I’ll try not to envy those who are walking “in honor of’, and I’ll try not to cry. I’ll try to be strong the way you want me to be,  I’ll try to be a mom, and BFF, you would be proud of. I really will try, Jacquie, for you. I hope you will be there to help me, because, now I need you. And I BELIEVE you will be there next to me. I love you Jacquie- forever and always, mom
 
“A daughter needs a mom because no one understands girls like a mom.”
September 23rd 2008– Another weekend over, another day done. Will I ever stop counting the days since Jacquie left us? Will I ever not know exactly how long it’s been since she’s been gone? The reminders are everywhere, and for now- they all make me sad. I find it so hard to have good memories right now. Everything that reminds me of her, reminds me that she isn’t coming home, reminds me that I don’t have to hurry back to Roswell because she needs me. I forget that she isn’t there waiting for me to bring back clean clothes or something that she might possibly feel like eating. I forget that she doesn’t need those things anymore. But I still need to do them for her, I feel as though my time with her isn’t over yet. I still need her to need me. I feel so lost. I’m trying, Jacquie, really I am but it’s so hard. I’m not that strong. I felt strong enough to help you fight for as long as necessary, for months or years, whatever it took to make you well again. But I’m not strong enough to do this without you. “A daughter needs a mom to catch her if she falls.” I will always be here to catch you Jax, forever and always. I need you to BELIEVE that. Love mom.
 
September 19th 2008– Another day to face. Every morning I still wake up and my very first thought is ” I hope today is a good day for Jax”, and then I remember- her days are all good days now. I pray her days are pain free and filled with love and laughter. I pray she knows how very much she is missed and loved. I pray that she knows that we are all trying so hard to be the people she would want us to be. I keep looking through one of the many books she gave me over the years, this one is about “Why A Daughter Needs A Mom”, and I found this and thought I would share with you. “A daughter needs a mom to share in her excitement when she falls in love for the first time, to share her daydreams with her, who wants to help her make her wishes come true, and to love her for who she is.” My dearest Jacquie- I hope I was able to do some of those things for you. I hope you know how much I love the incredible person you are and I would never have wanted you be different in any other way. I wouldn’t have changed one thing about you, you are the daughter I dreamed I would have someday. The daughter that I marveled at, the daughter that made me wonder what I had done to deserve you. And Jax, just in case you didn’t know (but I’m sure you do) you have an equally incredible brother, who also is everything I could have dreamed a son would be. He has been so wonderful this past year, well, actually his whole lifetime. He has been by your side for every step you have taken since you were born. He has been there for you and will continue to be, “forever and always”. He has worked so very hard on your website and your fundraising, he will make sure that your foundation continues to raise money and awareness for the awful disease that took you from us. He works so hard to be sure that your fight will never be forgotten. And he tries so hard to comfort me when I’m crying. During this past year, there wasn’t anything he wouldn’t have done to make things easier for you, or if possible, to make it all go away. He regretted so much that he wasn’t a match for you to be your bone marrow donor. He said he felt as though he had let you down. Then Sandy told us that you were glad he wasn’t able to be your donor. We were so surprised at that, until she explained that you felt that it would be too hard for him to bear, if he were your donor, and the transplant failed. What a gift you gave to him with that simple statement. He always asked why it was you and not him who got the leukemia, Dad and I wondered too, why not us instead of you. Once again, Sandy told us that your thoughts on that. She said you told her that you didn’t think that we were strong enough to fight it. Jacquie, I wish it would have been me, I would have been strong enough if it meant I could spare you. I think now I’m not strong enough to get through all of this without you. I would have given my life for yours- but nobody gave us that option. Where do I find the strength now. The strength I needed when you were fighting your battle is nothing compared to fighting without you. Please find a way to help me, to help all of us. We still believe in you my Angel.
 
September 16th 2008– 10 days – a lifetime. It seems as though it’s been a lifetime since I held Jacquie’s hand. The days are not getting easier yet, although everyone says they will. When?  Sometimes I feel a scream in my throat, and I want to let it come out, but I’m afraid if I do, I’ll never be able to stop screaming. I feel that the hole that is in my heart will never be filled again. Each breath I take still hurts, because I can no longer feel Jacquie’s breath on my face. As I sit here and write, I listen to the CDs that Jacquie’s cousins made for her for the wake, to be played during visitations (we all know she would have been appalled to hear “elevator music” playing). I can hear her singing along with all of them, sometimes making up her own words if she didn’t know the real ones. I remember us singing so loudly in the car that even with the windows closed, people would stare at us. I really think she had a much better voice than I did!  And as I listen to the words of most of these songs, I realize that they aren’t just words, they reflect Jacquie and the way she lived her life. She truly did live every day to the fullest, and she really tried to be a good friend to people. The songs she loved meant something to her, and even if she didn’t know it, they were who she was. Danielle, Angela, Marianne and Kerri- thank you for knowing the songs that give us words to live by. I know that much of what I will be writing is jumbled and confusing but that is my mind these days, so please bear with me once again. I wanted to ask if anyone else noticed, as our family did, the incredible way that all Jacquie’s friends and not-yet-met friends acted and dressed at the wake and funeral. Not only were the numbers of them staggering, but they were all so very polite, concerned, and genuine. The men were all dressed in shirts, ties,(some even in suits!!!), no baggy jeans with underwear showing or shorts with flip flops. The women were all in good dresses or dress pants with nice blouses or sweaters. When we talked about it, our family was amazed, but even more than that, we were honored that you all showed so much love and respect for Jax. I’m sure she was looking down at all of you and was deeply touched that you cared to say goodbye in such a wonderful way. I bet she was thinking”WOW, you all look great, you clean up really nice, thank you for doing this for me”. You humbled us with your presence and we are very grateful for the manner in which you said goodbye to our Jax. Last night we began the  process of writing our thank you’s. There are hundreds of you to which we owe our gratitude and need to express our appreciation for things you have done for us. Please know that it will take time, but we will get them all done as soon as possible. Also, unfortunately, some of you we don’t know addresses for or how to get in touch with you. And many of you sent flowers or donations from a group and we have no contact information, names or addresses. We will do our best to make sure we thank you, even if we end up having to post the thanks on this web site. And thank you to all of you who waited, some of you up to 2 hours, to say goodbye to Jacquie. We are still trying to find the words to express our gratitude, I don’t know if we ever will. Time for me to finish, the tears are still falling and I’m finding it hard to type. Remember to make today better than yesterday. Smile more, laugh more and most importantly- love more. KEEP BELIEVING and remember, we all have our own Angel watching over us now, and her name is Jacquie.
 
September 14th 2008– I know I haven’t written in a long time, but I thought today I would let everyone know some important things. First- the song playing in the background right know is “The Rainbow Connection” by Kermit the Frog, from the Muppets. I used to sing that song to Jax from the time she was little. As she got older, she would tell me to stop singing, unless I was singing with the radio or something because when I sang alone, I sang so bad!  When Jax went to the ICU, and had to be intubated, and sedated, I would sing that song to her and tell her if she wanted me to stop- she would have to wake up and tell me herself. She never woke up to tell me, so I hope that means that she wanted me to sing to her. The next thing I want you all to know is how very much I miss her. I know that she was a wonderful part of all of your lives, and we were in no way prepared for the number of people who came to say goodbye to her. But she was, and will always be my daughter, the bonds we shared will never be broken. The past 11 months brought us so close it felt as though we were one. I learned so much from her and about her. I prayed so hard that I would be able to help her win her battle. She fought so hard and was so determined. She continued to make plans for when she came home, when she would see her family at parties, when she would go out with her friends, and when she would be a “real teacher”. I told her she already was a real teacher. I told her that everyday she taught people what courage meant. I know that there were so many days she didn’t think she could keep fighting- but she did. I miss her so much- she is everywhere I go, everything I see- but she is not next to me anymore. When I go to bed at night she is not next to me, I can’t hold her hand when she sleeps, I can’t brush my hand over her soft, bald head, I can’t feel her breaths on my face, and I can’t hear her heartbeat when I would lay my head on her chest. Another thing you all need to  know is how very much she loved you all- family, friends and friends she had yet to meet. You all were a very important part of her life and the person she was. The messages that you have sent tell us what an amazing person she was, but you need to know that you all were part of helping Jax become the person she was. Parents do not raise their children alone, they have help from all those who contribute their child’s life. So, thank you so very much to all of you for helping us to raise a daughter we are ALL proud of. There is not enough time in my lifetime to personally thank each one of you for the gift of love and friendship you gave to Jax, but I will try everyday to continue to live my life the way she would have wanted, and maybe in some small way, you will know how much I am thanking you. Jax’s 23 years are filled with hundreds of years of wonderful memories shared with all of you, memories that helped her through her very hardest days, thank you for giving them to her. To all the incredible people who took such great care of Jax- there are no words to express our thanks. She felt very cared for and loved by all of you, and as her family, we could not have asked for better people to take our daughter through her journey. Torey, TJ and I felt as though you treated her as if she were your family, and we would like you to feel as though she was. We would be honored to have all of you be part of our family, and to feel as though you made her journey and her fight easier for her. We could not have asked for more from you.  As this is getting more difficult to write, I have one more thing to say for now. Jax’s life is not the only one that was blessed by knowing all of you. Torey, TJ and I will forever know the love and friendship that you gave to all of us. Your support, prayers, encouragement and love was unlimited and un-wavering. In the days ahead I do not know what I will do without her. I know I have to “go on ” and “learn to live without her” but for now, that seems impossible to do. I will try because that is what Jax wanted, but it is going to be so hard. We know you are here for us, thank you for that. Thank you for living each day to the fullest, for not wasting a minute of your life, as Jax wanted us all to do. Most of all, that you for letting Jax’s memory live on through your words and actions, and by teaching others Jax’s lessons. Jax said she had lived a “perfect life” and there was “nothing she would change if she had the chance to do so”. We should all be so blessed to be able to say that when it is our time to be with Jacquie. Torey and TJ- Thank you for holding me up when I could no longer stand, I love you both so very much, and we will somehow find a way to get through this. Jax, my BFF- I love you, my darling daughter. You were a gift from heaven when you were born and now you are our gift to heaven. Be happy, and know how much you are loved and missed.  Love to you all, Jacquie’s BFF-mom
 
September 6th 2008 – Dear family, friends, strangers, followers and believers. It is with great sadness that we bring you the news of this latest update. Jacquie has been fighting so hard for so very long that her body was having trouble keeping up with all of the chemo, medications, radiation, shots, pills and everything else that she was forced to endure. Since her organs were not functioning properly they began to shut down. Seeing her in such pain and fighting as hard as she possibly could just for air was not the same Jacquie that we all know and love. It is very difficult for us to know that she will be in a better place somewhere else than on this earth with all of us. She will be dearly missed by all who have known her, and, even those who have not. The decision for Jacquie not to have to struggle anymore was confirmed by her as she layed comfortably in bed with eyes half open and a smile on her beautiful face. At that point, we knew that Jacquie was at peace.
 
For all of us who believed so very hard since September 28th 2007, we prayed for the best for Jacquie. Little did we know that was is best for Jacquie is not whats best for us. We had hoped for a triumphant victory becuase that is what we expected. We wanted it to be easy for her and to fight hard and to come out on top. But anyone who knows Jacquie knows that she never takes any short cuts and never takes the easy road. Her strong will and her determination always means its her way or no way at all. And for her, I truly believe that if she were to beat leukemia, like we all had expected, that would be taking the easy way out. We have struggled to find the answers of some questions that may never be answered. But tonight I figured out the answer to the most important one of all…why? The answer is simple. Had Jacquie done what we all expected of her she would continue on with her life, finish school and begin her teaching career. There, she would teach a lot of people a lot of different things. Since she didnt, she is teaching everyone only one thing. That is her gift to us. She is teaching all of us never to take one day for granted, never to waste time, to sieze opportunities and to love, and be loved. Something that we may have overlooked in the midst of her victory celebration. Jacquie is special, she is unique. She also knew this entire time what she was doing. This was no accident and it was no failure. She knew the outcome and she knew the lesson she was going to be teaching all of us. The mark of the wonderful caring teacher we all knew her to be. As this all started to become clear in my mind I couldnt help but smile, I finally got it. I figured out what she was up to these past 11 months, so, I asked her. Is this it Jacquie? Is this the reason for all of the pain and the suffering and heartache? She didnt need to reply with words, the smile on her face was all I needed to understand her answer of “yes.” I would like to think that the only reason I was able to figure out this plan of hers is because of the special bond I have shared with her for the past 23 years. In all my life I have been a lot of things, a student, a grandson, a nephew, a cousin, a friend, an athlete, a teammate and so on. But never, in all those roles has it ever meant so much to me than to be Jacquie Hirsch’s Big Brother. No matter where I go in my life, no matter how long it lasts I will always have that. Jacquie is a beautiful person both inside and out, she is loving, she is caring and most of all, she is strong. She is strong enough to have the courage to sacrifice her own life in order to make us appriciate ours. I ask that we dont focus on the time with Jacquie that was taken away from us, but on the time spent with her learning and loving. Those memories are far more important now than any other thoughts can ever be. There are no good-byes and there is no “gone.” Jacquie will forever be with each and every one of us. She will be with us every second of every day becuase she taught us how we should be living that day, to its fullest. One of life’s greatest lessons, taught to us by one of life’s greatest teachers.
Jacquie Hirsch.
 
I love you pal & I am going to miss you very very much.
Forever and always, Your Big Brother.
September 6th 2008 – Day +37 – Again its early in the morning and Jacquie continues to fight the great fight. Yesterday was a very uplifting and emotional day. In the morning Jacquie opened her eyes several times and appeared to show a few responses. She had many very dear friends and family come to visit and bring their love and strength. Her Geneseo and sorority friends and sisters filled the waiting room with love and laughter. Among the many things I told Jacquie today, one was of friendship. As we all travel through our lives, we all encounter people and form countless friendships. As life goes on some friendships grow stronger and some fall victim to our changing times and life itself. If we manage to hold on to a handful of true friends throughout our life time  we are very fortunate. Those friends who are loyal, see us as we are, care for us, love us, are trustworthy, would do anything for us, and they make us better people by being in our lives. They are true friends. I told Jacquie she is very unique and extremely special to have so very many true friends in her life. I told Jacquie of the over 80 guestbook messages from as far away as a stranger from England. that flooded her with good wishes. She in turn had a peaceful day with no additional major problems. I found it difficult it see family, friends, and many of Jacquie’s friends deal with the pain they have encountered with Jacquie’s battle with cancer and with the pain of uncertainty that lies in the days ahead. Having so many people in Jacquie’s life that deeply care about her is uplifting as a parent. As Sharon mentioned earlier today, it is many of the parents of her friends, her friends, family and an incredible big brother who have aided in creating the special person that Jacquie has become. Sharon and I are extremely thankful for the tremendous influence you all have on Jacquie.  As I watch over Jax I remember a story Sharon told me about. We were in NYC at Sloan Kettering for Jacquie’s first transplant, with no hair, uncertain as to what lies ahead for her, countless tests etc… Jacquie’s sees an older women with her husband in the waiting room and she is crying. Jacquie walks over with her big tink smile, talks to her and tells the women everything will be alright. The husband told Sharon his wife had been very depressed over loosing her hair and thanked Jacquie for talking to his wife. I could write a book about the encounters Jacquie has had that have enriched another person’s life, a true teacher. Find the strength and the courage to make a difference in someone’s life today. Believe in yourself, BELIEVE in Jacquie, Believe in Miracles.
September 5th 2008 – Day +36 –  It is very early Friday morning and I search for the words to write about yesterday. Jacquie, as always was fighting harder than ever and Sharon at her side. Her heart was beating so fast at times just to keep pace with everything she is going through. Each breath wasn’t without effort. We have reached a critical point in Jacquie’s fight. Her Dr. met with us to go over her current medical status. I will try to give this message by describing the medical facts and still provide hope. I have the habit of writing and always finding something, anything, positive to highlight and downplay the other difficulties involved in Jacquie’s fight. Medical staff from Roswell Park Cancer Institute, Memorial Sloan-Kettering, Yale Cancer Center, and several specialists across the country have done everything possible to bring about a cure for Jacquie’s leukemia. She has a rare form and a mismatched transplant donor as she went into this next to impossible but believable fight. There is nothing more the Drs. can do for Jax that isn’t being done. The transplant has engrafted as needed, GVHD has occurred extensively, and medication is being pumped into her to control it and balance all levels and organ functions. She is currently in critical condition with the distinct possibility of major organ collapse. The staff at Roswell and certainly her family has NOT given up hope. The staff has been wonderful in their efforts to care for all of Jacquie’s needs and keep her comfortable and without pain. Family, friends and staff were in and left their strength behind with her. If there is to be a miracle, Jacquie needs it NOW. Despite not being able to communicate with Jacquie for three weeks now, we are sure she is fighting like hell. Please send your powerful BELIEFS, warm thoughts and prayers her way today.
 
September 3rd 2008 – Day +34 –  Today was one of the most difficult days we have incurred. On the positive side, Jacquie was moved off the ICU and back to the tink floor. She has continued to hold her own with breathing through the trach tube. Because of her status with the GVHD of the skin, she has a special bed to help decrease skin breakdown. We are concerned with the move because in the ICU she had her own nurse stationed just outside her glass door so if anything happened they were there in seconds. Jacquie remains on round the clock pain medication and is not alert or talking yet. Her constant care and medical condition is at its highest level. The GVHD has hit her hard and has taken a great toll on her inside and out. The bone marrow test is no longer a priority. It was to be done on or around day 30 and would determine the presence of leukemia or not. Due to her current medical status being so compromised, we now have to change our way of thinking of that which meant everything to us and on to getting her medically stable. Her Drs. are working their best and hardest to do so. I‘m sure Jacquie can’t wait to catch up on face book and her phone messages but it will be some time yet. Like many friends and family who miss hearing her voice and seeing her smile, I found myself calling her phone so I could hear her voicemail and leave her a special message to retrieve at a later date. It is going to be an extremely difficult next few days. Her liver is having severe difficulty filtering all it needs to. To all Jaquie’s family, friends, and followers: Please say an extra prayer for her over the next few days, I know she is fighting with all her might and she in turn BELIEVES in you.
 
September 2nd 2008 – Day +33 – Jacquie has made the most progress today, more than she has in the last two weeks by being off the respirator since yesterday morning. This was a huge step towards getting back to her tink room upstairs. It will be going on three weeks this Thursday that Jax has been in the ICU and basically out of touch with life around her. She was seen by a skin specialist this morning to deal with the GVHD on her skin and face and that went well. As I look up at her tpn feeding bag I realize she hasn’t eaten food in over a month. When it comes time, Jax will really need to get spoiled. Last night Jacquie was moved into the “presidential suite” of the ICU rooms. Its really big. I like to think its because its Jacquie and not that its easier for everyone to get around three loaded IV poles, a vent machine, and a lot of other important crap. She has had some really great people caring for her in the ICU. When your daughter is on life support and anything can happen at anytime, it’s reassuring to know how much they care. We are continuing to have personal issues in dealing with this disease even after such a long time. We try to latch on to some small positive improvement daily, however, with each step forward, there are always steps sideways, backwards, or both with other interrelated body organs and functions. This roller coaster ride gets very rough at times with no guarantees. The one thing that never changes from day to day, that is always positive, is our BELIEF in Jacquie and the power of ALL her BELIEVERS.
September 1st 2008 – Day +32 early am. Happy Labor Day & Happy Birthday Bree! Yesterday was a big day with Jacquie’s breathing. Like many things that are most constant, is change. Jax was to be sedated and on the ventilator this weekend however, the ICU Dr. decided to test Jacquie’s breathing and took her off the sedation meds. and the ventilator for about 9 hours, she did awesome and had some good breaths, not shallow or weak this time. A huge step forward ! For most of Jacquie’s journey with cancer there is good news and bad for the day. Many issues are going on all at once so it is an incredible juggling act. We just have to take them in order of importance and move forward a little at a time. The GVHD has made its mark, especially with her skin on her face, head, and neck. She will see a specialist on Tuesday for her skin, currently she is receiving a gel that is typically used for burn victims. A few different steroids have been introduced to control the GVHD.  As we have mentioned it is important to have some GVHD because its a must that GVL (graft vs leukemia)  occurs.  As soon as Jacquie stabilizes, she will need to have a bone marrow test which will determine the leukemia status. Currently, blood tests have not shown evidence of leukemia. Proof that we will continue to BELIEVE in. Have a wonderful holiday