May 31st 2008 – The day after Jacquie’s 23rd birthday. She had a good day yesterday. The night shift came into her room a little after midnight on Friday, singing “Happy Birthday”, and wearing goofy face masks as party hats. It was silly and it made Jax laugh. Then, that morning I let her sleep in a little, knowing the day would be tiring. She had a steady stream of text messages, voice mails and visitors all day wishing her happy birthday. Many of the staff here at Roswell also stopped in to see her. Torey brought in a cake in the afternoon for the floor staff, and even though Jax couldn’t have any, she enjoyed knowing her day was being shared by those who are taking such good care of her. Unfortunately, Jax continues to be bothered by the chemo rash, which is getting worse, more reddened and more itchy. The medications don’t seem to help for long periods of time. She is also still having stomach issues, that are not getting any worse but are still causing her problems. She spent a lot of time out of her room yesterday, the exercise is good for her and it helps distract her from her itching. She has put up her “Laps for Jax” sign on the door and is once again keeping track of how many laps she takes around the floor (33 equals one mile). She is almost at a mile and will most likely go over a mile today.The best part of the day was last evening, when Jax’s Grama Bree was bringing in cupcakes for us to celebrate her birthaday with. Jax just thought it would be Torey, TJ, myself, Bree, and maybe a couple other relatives.  SURPRISE JACQUIE!!!!!!! Torey had called the family and Jax’s friends to come to Roswell for cake and ice cream, and Jax was so surprised when she walked into the waiting room and heard everyone yell “surprise”. It was great! She really didn’t expect it because we didn’t plan anything too big since we weren’t sure how she would be feeling. But it worked out great. There were about 30 friends and family and lots and lots of balloons. So, she had a short visit with everyone and then everyone had cake and ice cream. Since Jax isnn’t able to have store bought baked goods yet, she feasted on Bree’s cupcakes- strawberry with strawberry icing, of course. Jax was exhausted by 8pm and couldn’t wait to get to bed. After Torey and TJ left , she feel asleep almost immediately. So, once again we find ourselves saying “this isn’t how it was supposed to be.” Jax should have been out partying for her birthday, not here. But since she is, we try to make the best of it for her. And all of you helped us to make her birthday special, so we thank you with all of our hearts. Next year, we are going to have a Huge party for her 24th, so keep the date open. It’s a little after 10am on Sat. and Jax just finished breakfast and a unit of Platelets. The platelets had on the wonderful little green sticker that tells us someone donated directly to Jax. It never tells us the name, but it tells us that someone out there is giving life to Jacquie and there are no words to tell you how much a gift like that means to us. Every little green tag Jax sees, tells her that she is loved and has not been forgotten. To all of you who took the time to visit and send messages to Jax, Thank you. We all need to KEEP BELIEVING.

 

 

May 29th 2008 – At 3pm today, Jax received her last dose of chemo. She made it through the course of 12 plus 3 without too many problems. Tuesday night, however, was a rough one.  Her blood pressure dropped to a scary 70/34, her pulse went up to 138 and her temp hit almost 102. Dr. McQuiller was great, he came right up and started writing orders. She had blood cultures done, a chest x-ray, new antibiotic orders and another bolus of fluids. Since her counts have dropped way below normal, she also received 2 units of packed red blood cells. By late morning, things were stabilizing, then we got slammed by another problem, the chemo was causing some disruptions in her nervous system. The neuro checks that the doctors do prior to each dose of chemo showed that Jax’s body was getting too much and the dose would have to be decreased. We are thankful that these checks are done, otherwise she might have continued to get too much, possibly causing some permanent damage to her CNS. The problem with her eye that was picked up yesterday, was already better this morning. Anyway, the last 3 doses of chemo were given at a much lower dose, and are now over. Last night, we gat a taste of what is ahead for the next 2-3 weeks. Jax has developed a rash, called an ARA-C rash. It is named that because the chemo is named ARA-C and the rash is a common side effect. It started on her feet – they became very swollen, hot and reddened. Then is spread to her legs, and now it’s just about all over. The docs started her on a creme, and and anti-itch pill, but as of this, she is still very uncomfortable and I have to keep reminding her not to scratch, and threatening to put gloves on her hands. She is also having some stomach issues, but not too bad right now and is managing to try to keep eating as much as she is able. She’s been very good about doing her mouth care, because we know that mouth sores and ulcers are another real possible side effect. On the very good side, Jax has been out of bed a lot, doing laps around the floor and spending time in The Lion’s Den (aka “CLUB LD”) which is the great new playroom/activity room here on the pediatric floor. They have a WII and yesterday her cousins taught her some of the games-bowling, boxing, and her favorite, tennis. She has also been working with a physical and and occupational therapist to keep her strength, endurance and coordination as close to normal as possible. Today Jax had to have another unit of blood and it won’t be long until she needs platlets, so anyone who has the time and would be able to, please consider donating either platelets or packed red blood cells to Jax, she will be needing them frequently. She is A-positive, but even if you aren’t, someone else may need it and any type of blood can be used for the platelets that Jax needs as well. I want you all to know how incredible Jax is handling this latest setback. She has her moments of anger and despair, but continues to fight and move forward, as she has done all along. Tomorrow is her 23rd birthday and DAMN IT, SHE SHOULD NOT HAVE TO BE CELEBRATING IT IN ROSWELL PARK CANCER INSTITUTE.  I HATE THAT SHE IS, AND I HATE THAT I CAN’T CHANGE IT!!!!!!.  But just wait- you wait and see how we celebrate her 24th birthday!!!!!!!. Love to all our friends and family, and especially to our Hope Lodge “family” we miss you all and are we praying for you. To everyone KEEP BELIEVING.
May 27th 2008 – Dr Wetzler just stopped in for a visit and brought us some explaintions to a lot of our unanswered questions. Although his presence was comforting, some of the answers we really didnt wish to hear. He confirmed that Jacquie will remain an inpatient here at Roswell for at least 4 weeks. Her induction chemo would be too dangerous to be done on an outpatient basis so she will be staying here for quite some time to be monitored for side effects and fevers. He also informed us that this is not always 100% effective, but for Jacquie IT HAS TO BE. We need to get her back into remission, get her Leukemia under control and start thinking about her next transplant. In addition to going through induction chemo and everything else that already took place 8 months ago, Jacquie will have to undergo a second transplant, and she needs to be in remission for this. This means another round of chemo, another series of radiation treatments, another 100 days and so on. It’s too soon to tell where it will take place & who the donor will be but for right now, the focus has to be on remission. Her chemotherapy doses are much stronger, much more intense and much more more toxic to her body than the first time around. This hopefully will start to take effect and begin killing those damn cancer cells. As expected, Jacquie is upset to learn that she will again be starting this journey all over and angry that another special day (her birthday) will be spent in a hospital.
Since her diagnosis, we have tried to look for the most positive aspects of what has happened and find a way to use Jacquie’s brave fight to bring awareness of cancer and what patients have to endure. Since September 27th, Jacquie has caught the attention of thousands of people, the media and medical staff from all over. Jacquie has so much support, so much love and so much strength that there must be light at the end of the tunnel, its just that the tunnel seems a little bit longer now. Please stay behind us and keep praying for Jacquie’s continued strength, smiles, and laughter. And as always KEEP BELIEVING.

 

 

May 25th 2008 – Jax is into her third day of chemo. She will need to have 12 doses of a very strong chemo drug called Cytarabine (ARA-C), 2 per day at 9am and 9pm, and 3 doses of another strong chemo drug called Mitoxantrone. This drug she will get after dose 3,5, and 7 of the Cytarabine. Jax had a new port put in on Friday when she was admitted and all her IV chemo, drugs and blood products will be given through this line, which is in her neck. She is getting anti-emetics (anti nausea) drugs around the clock to prevent her from becoming sick from the chemo, and so far it’s working. The only thing is, it makes her very tired and she has been sleeping almost since she was admitted. Therefore, she is not eating, or getting any exercise, but at this point, the benefits of not vomiting all the time outweigh the lack of food and activity. Jax is also having to deal with some other issues now. Once again, her blood pressure is low, her heart rate is very high and her temperature is going up. Some of her electrolytes are also above or below the normal limits. The docs are giving her numerous medications as each of these situations arise, in an effort to bring the levels back to more acceptable ranges. It seems that the solution to one problem ends up causing another. I wish I could just lock the door to her room and not let anyone in unless they have good news. At times I can feel a scream in my throat that wants to get out and yell at the injustice of all this. Jax will be 23years old on the 30th, and she should be living the life of a 23 year old. She should be teaching children, going out with friends and family, shopping, and having fun. She should not be having to fight this fight again.  I HATE THIS AND I AM SO DAMN ANGRY!!!!!!!!!!!! I hate that I feel so helpless, and I hate that, in spite of all the offers from so many of you to help in any way you can, that there is nothing anyone of us will be able to do to make this go away. I hate that Jax has to suffer, and that I can’t suffer for her. I know she will make it through this, but what I hate most of all is wondering why she has to go through it at all.  Please KEEP BELIEVING, we continue to need your thoughts and prayers to help us through this.

 

 

May 23rd 2008 – Jacquie was again admitted to Roswell Park and arrived at 10:30 this morning. She was given a bed on the pediatrics floor and is currently resting in her old room. Although the staff is saddened to learn of Jacquie’s circumstances, the doctors and nurses are happy to be taking care of her. A small sign of comfort to help as she faces the new challenges ahead. It is sad to think that our dose of reality and family time could only last days, and even though we are back in Buffalo, we’re still not home. It was nice while it lasted and we all enjoyed having Jacquie & Sharon back at the house and spending time with our realitives…but now our attention had shifted back to Leukemia and all the uneasiness and fear that comes with it. Scared about what the day might bring, Jax however faced her minor surgery with the strength and determination that defines her. She had to have another port inserted through her neck which will be used for IV’s, to draw blood and give medications. This will need to remain in for some time and hopefully she gets used to it quickly and the pain subsides so that she is not uncomfortable. She does not like having these ports becuase of the pain involved in putting them in, and, also they are a place to harbor infections. These infections can lead to fevers and cause longer or unplanned hospital stays for her. Jacquie spent most of the day in bed and resting. It was a long and stressful day for her and the medication she was given to help with nausea made her drowsy and exhausted. Chemo was given at 9:30pm and Jacquie will be monitored closely throughout the night and into the morning. We will not know much more information until the team does rounds, probabaly tomorrow. We are also anxious to talk with Doctors Wetzler & Wang who are very familiar with Jacquie and her case. They will be in contact with her transplant doctor from NYC, Dr. P and together, get Jacquie back into remission. We will post information as it becomes available so check back often and in the mean time please keep thinking of Jacquie and praying for her complete recovery, as well as other patients who are fighting these difficult life threatening diseases. And as always, BELIEVE.
 
I believed in belief, for its own shining sake. To believe in the face of utter hopelessness, every article of evidence to the contrary, to ignore apparent catastrophe – what other choice was there? We do it every day, I realized. We are so much stronger than we imagine, and belief is one of the most valiant and long-lived human characteristics. To believe, when all along we humans know that nothing can cure the briefness of this life, that there is no remedy for our basic mortality, that is a form of bravery. To continue believing in yourself, believing in the doctors, believing in the treatment, believing in whatever I chose to believe in, that was the most important thing, I decided.
It had to be.
 
-Lance Armstrong
7 Time Tour de France Champion and Cancer survivor
 

 

 

May 22nd 2008 – Hello dear family and friends. This is Sharon, and if I thought that writing the updates was difficult before, I was wrong. It was a piece of cake compared to now. I haven’t written since Torey and TJ brought us the news on Sunday because I honestly don’t know what to say. Our days spent in NYC were hard and a challenge- some days more than others. Sloan Kettering was incredible- the staff on the BMT floor made our journey there so much easier than it could have been. So many people who deserve our thanks and gratitude that I couldn’t begin to name them all. Hopefully, Dr. Popadpulous and her team know they rate #1 with us and we are so thankful they were Jacquie’s team. We know we made the right decision going to Sloan and we have no regrets. Hope Lodge is truly a place of healing and comfort. I don’t know what we would have done without it. The staff was supportive and caring at all times and it was good to be with others in the same situation. It was lonely without our family and friends, but the new friends we made helped make it a little easier. We became a new family with them, and we shared each other’s good days, and bad news. Their successes and their disappointments became ours also. We will miss them all very much, and pray for them. You will all be forever in our hearts and our prayers. As Jax said, our homecoming was not what we thought it would be or should have been. We are glad to be home but I am so very angry that Jax has to start her fight again. She has been so amazing throughout this whole thing and is such an inspiration to so many people who we have met along the way. Jax will fight through this again, and keep fighting until she wins. She will win because Jax doesn’t give up. If you would have seen her on some of her “bad” days, you might have wondered if you would have been able to keep going if you were enduring what she had to go through. I know I thought I wouldn’t have been able to do it so many times. But Jax did, and will continue to do so. Once again, or is it as usual, our days ahead are uncertain. We ask for your continued prayers and support. I can honestly say that our friends and family are the very best there is, and we’ve made it this far with you and because of you. To TJ – I thank God every day for giving us a son who is as caring and loving as you. Jax has always been able to count on her big brother, and now more than ever, you have shown her that you will always be there for her. No parents could ask for anything more. Torey, you are my rock. You are the other half of me – the part that makes me whole. If there are any of you out there who don’t believe in “soul mates” you are wrong. Without Torey, this journey could not have been made as far as we have made it. My heart breaks at what Jacquie has to go through again, and there are times when the tears will not stop falling. Once again I question, “Why her-why not me?” But know this, We are not through fighting and no matter how broken my heart is, it is still plenty strong enough to get through whatever is ahead for her. Jacquie has a lot of plans and dreams for her future, and although these plans are on hold and indefinitely delayed at this time, NEVER, NEVER, NEVER doubt that she will fulfill these plans and she will live out her dreams. And when she does, we will all be watching with pride and with love. For now, keep praying and KEEP BELIEVING
 

 

 

May 21st 2008 – Starting round two, fighting the fight. We all arrived home yesterday, unlike the home coming we all had envisioned in the next week or two. Jax had been doing so well, gaining her strength and weight back, keeping her spirits and optimism up, following all the Doctors orders, visiting with family and friends, shopping, and did I say shopping 🙂 Then it seemed like out of nowhere, the Drs. news hit us hard. After a bone marrow test and the additional blood tests that were taken at Sloan this past Monday, the results confirmed that the abnormal cells are the leukemia cells. They are back in strength (not as strong as Jacquie however) and she now has to undergo re-induction of chemo to put her back into remission. We all were in agreement to come back home, so this could take place at Roswell, close to family, friends, and the comfort of the leukemia Doctors that put her into remission the first time. She will be admitted this Friday back into Roswell Park and be an inpatient for an undetermined period of time at this point. She will need to be about six months out from transplant (approx. 3 more months) and in remission for the transplant team at Slaon to attempt another transplant option. Life tests us all in different ways and in different times of our lives. The past seven months and twenty three days demonstrated that Jacquie more than admirably passed the most difficult test of ALL.  We will be even stronger and more resilient in the quest for her cure. This leukemia doesn’t know who its messing with, it really should have given up the first time. As we move forward into uncharted territory, we again seek the continued support and prayers from all of you that truly BELIEVE. As I continue through this journey of my life, I find each day, my pride as Jacquie’s Dad, swells to the breaking point. I think each child should have the opportunity to learn from this wonderful life teacher. She is so wonderfully amazing in so many aspects of her personality. Sharon has kept us all up to date on Jacquie because since day one, she has always been there. When we talk, Sharon thinks that any Mom would do what she has done. I think the nurse in Sharon certainly gives her the one up on most Mom’s. The thought that all and I’m talking every vital sign, any time of the day or night has been documented, every medication consumed has been documentated, she has provided valuable information to the staff, Drs, residents, she has totally put Jacquie’s needs both physical and emotional above all else, has been a Mom, has been a BFF, and a champion for the cure. There was always something special about Sharon since I met her in middle school and the special qualities as a Mom shine bright. Sharon, like any Mom ? Maybe, then again, maybe not. Watching the quality bond between your children is the greatest feeling a parent can have. I thought the other day how blessed we are to watch the relationship between TJ and Jacquie. They symbolize what a sibling relationship is truly meant to be. Its amazing to watch the two of them together in good times and in bad. Their laughs together echo in my mind and most of the time Sharon and I understand their humor. TJ could easily teach a course on how to be the best big brother in the world or quite possibly, this can be something one only learns. He too is an extremely amazing person! As far as our family and friends, we find the love and support overwhelming and greatly appreciated. We are surrounded by incredible family and friends that always BELIEVE. It is with your continued support and prayers that round two will be the final round of this desease. With greater strength and more powerful prayers, WE BELIEVE !!!
 
May 20th 2008  – Day 89, Update From Jacquie!
 
Hello everyone, Jacquie again! Well, I’m coming home today. My dad and brother came down to Hope Sunday night to give us some news. My doctor has informed us there were some abnormal cells found in my blood work. Yesterday, we went to clinic to have more extensive blood work taken and another bone marrow test. We will not know the results until, at the earliest, later this week. The good news is I can come home. It’s not the home coming I wanted but until we get the results back we won’t know much. I don’t see this as a little “bump in the road” honestly I’m angry and frustrated. Thinking about how good I felt this past weekend regarding my recovery and excitement to come home, made this news hit me hard. Right now we’re hoping and praying for the best. All I need from you is your prayers and well wishes. I know it must be hard to know what to say at times but it’s ok to tell me this stinks. I want you to feel comfortable to ask questions and just be yourself. I need your strength but like me, you can have frustration too 🙂 I’m so excited to see you all and thank you again for all you do. Love always Jax.
 
May 18th 2008  – Day 87, Update From Jacquie!
 
Hello everyone- it’s Jacquie! Well today is day 87! I’m brought to tears looking back. It’s been almost 8 months now and is hard to process all that’s happened in that time. It seems I’ve lived some days excited and upbeat for a special outing, activities at the Lodge or a visitor. Then I’ve had other days where it feels like I count down the hours until I can go to sleep and ignore this endless nightmare. May 31st is my 100th day and will be an incredible milestone for me. I’ve worked very hard physically, mentally and emotionally for 8 months and reaching my 100th day will be a proud day for me. Although it will be a day for celebration, I face the reality that my fight doesn’t end on May 31st.  Truthfully I’m most likely another year or more before I’m physically recovered, not to mention the mental and emotional recovery. There’s very little time during the day that I’m not consumed with thoughts of cancer but I look forward to the day when I don’t think of cancer constantly. It’s just hard to swallow that this is never ending. It will always be apart of me and all I can do is try to keep it from controlling my life. This will take time and patience that will certainly trigger a lot of frustration, but I have no doubt there will be a time when my life returns to “normal” or at least a new normal. Things will never be the same but they won’t always be cancer either. I had a taste of home yesterday with a special visit from my friends Billy, Chris (Lyles), and Sandra. It was a major milestone for me because it was the first time in months I didn’t have my mom, whom I depend on for so much, by my side. My friends and I went shopping on Fifth Ave. while my mom went shopping on her own. It was tough not having her with me because I depend on her for so much and I feel insecure without her near by. Although I was a little nervous, it was nice to be off with my friends doing something “normal”. We had a lot of laughs which only made me more eager to come home. My Aunt Chris also stopped in for a visit and we had a great time! It was very nice to see her. I’m so close to coming home which makes me paranoid about having something set me back. I’m ready to see my friends and family, who I miss so much, and I’m ready to continue living. I will be having a bone marrow test before I come home and I would like to ask you all to do me a favor by saying an extra prayer for me. Please know how much I appreciate all your messages, texts, cards, letters, phone calls and goodies sent my way. I can’t wait to thank you all in person which hopefully won’t be long now. Your strength and encouragement has helped me in ways you will never know. I’m so blessed to have family and friends who are behind me 100%, believing and wishing the best for me. I couldn’t have a better support system and in the midst of all this cr*p, I find myself so lucky. Until next time… put things in perspective- don’t sweat the small stuff, appreciate what you have and those you care about, keep smiling, and most important always believe that anything is possible. Love always, Jax
 
May 15th 2008  – Day 84. Today was a really good day. Jax’s clinic appointment went well. Her counts are up except for her platlets, which have dropped recently. Dr. P. said this could be normal and will just continue to monitor. Vital signs and weight were good, still needs to put on a few pounds, however. AND, Jax’s Aunt Sheryl and cousin Kerri came in for the day to visit. They met us at Sloan and then we went to do a little shopping. After lunch we hung out in the nice weather on the terrace for a while, then went to the mall across the street. They had to leave for the airport about 5:45, but by then Jax was exhausted and ready for a late nap. It was sooooooo great to finally have something that was planned happen as planned. We had such a good time and it made both of us even more anxious to be back home (our real home, not Hope Lodge home). At times, Jax tells me she doesn’t want to make plans or get excited about up-coming events, becuase she is usually disappointed. Today she had a chance to know that it won’t always be disappointing. We hope all of our family and friends are well, and are making an effort to live each day to the fullest. You can’t be afraid of the future, although I admit I am a lot. But I’m trying to go day by day, as is Jacquie. We look at the end of each day as a challenge we survived and at each tomorrow as a challenge to be met. KEEP BELIEVING.  We love you all.
 
May 13th 2008  – Day 82. Jax had a good day today. She ate well and didn’t have any stomach issues. She seems to have more energy today, and was out of the room for most of the day.  She also had a “big event”. For those of you who watch “Desperate Housewives of NYC” Louann (the Countess) and her Husband (the Count) were here at Hope Lodge today for a visit and a TV interview. It was very exciting and afterward, they met with the patients and caregivers, here on the 6th floor. She met Jax and shook her hand and talked with her for a while. She was so neat and we were both pretty awed by it all. Tonight we had a support group meeting. These are open to patients and caregivers, and is an opportunity for people to share thoughts, concerns and anything else that someone feels should be discussed. It’s a great way to exchange information about meds, treatments, side effects, doctors, emotional issues, stress, anger, pain etc. These last for about 2 hours and are run by a social worker who volunteers her time for Hope Lodge. Anyone can attend, and you can choose to participate, or just sit and listen. Jax spoke quite a bit tonight and was able to share some information with a new lady who is starting radiation treatment tomorrow. I think this lady was glad to hear the reassuring things Jax has to say, and was a little less anxious about her upcoming treatment. I was very proud of her and how she answered the questions, gently but honestly. She was really great. Tomorrow is another support meeting, at Sloan, and we are planning on attending that on too. Today, once again, I am reminded how very blessed we are to have the most incredible support group in the world. Our family and friends are the very best, and I am sorry that so many people have to fight their battle alone. It’s hard to describe the feeling to others, the feeling of being loved and supported by so many, that at times it seems we have all become one. Don’t ever doubt the power of friends and family. It’s a power that can move mountains and change lives. You have all done that for us.  KEEP BELIEVING
 
May 12th 2008  DAY 81 and we are home!!!!!!!!!!!!!!!!!!!!!!(at Hope Lodge). The doctors discharged Jax today and we arrived about 6pm. We are very excited to be back here and Jax is feeling good. More to come tomorrow, Tonight – I’m wiped out and need to sleep. Thank you all for believing and getting us through another “bump in the road”, we could not have made it without you. KEEP BELIEVING.
 
May 11th 2008  – HAPPY MOTHER’S DAY! Day 80, May 11th. What a wonderful surprise this morning, TJ flew down to NYC to spend Mother’s Day with Jax and I. My dad came too, so it was a double surprise. It was so nice having them here, we had a great time listening to TJ and Jax laugh and imitate Stewie and Bryan from the Family Guy. They even played the Peanut Butter and Jelly song….again. I also had a chance to slip out for a little while and meet Erin, Lucy, Emma, and Lou at the Central Park Zoo. It was so much fun to spend time with the kids and see how they’ve changed and grown. It was great to be out for a while. Back at Sloan, it was “Indiana Jones” movie day until TJ and Papa had to leave for the airport. Both Jax and I enjoyed the surprise so much and are looking forward to being home and not having to always be saying goodbye to family and friends. Jax’s fever was down again today, so we’ll see what the doctors have in store for tomorrow. She ate pretty well and was out of be for a good amount of time, so say a prayer that we are going home soon. We hope all the moms had a great Mother’s Day, and that you all remembered to tell your moms how much you love them and how much they mean to you. KEEP BELIEVING.
 
May 10th 2008  – The end of day 79. Jax is still in Sloan, but the good news is her temperature is down. The doctors thought the temp might be from the chemo she received through the lumbar puncture on Wednesday so, instead of starting her on antibiotics right away, which normally they would do for a high temp, they decided to hold off to see if the fever would come down on it’s own. Also, antibiotics come with their own side effects and if Jax doesn’t have to deal with them un-necessarily, it would be better for her. So far, it seems to be working. Her appetite is good, and she’s trying to keep eating and drinking so she doesn’t lose weight like she did in April when she was hospitalized. The other great news is that the 13 1/2 hour wait in  “Urgent Care” (what they call the emergency room here), was worth it because we are back on the bone morrow transplant floor (8th). Jax, especially, is glad to be here, the staff is familiar and friendly, and this is the best place for her to receive post transplant care. Besides, today she was able to use her “little bike” again, since she is not able to leave her room to walk around. To be honest, I think she has missed it! She ASKED to use it – I didn’t ask her. I’m hoping tomorrow Jax is feeling well enough for me to leave the hospital for a bit. Erin and Lou have brought Lucy (my god-daughter), and Emma (her sister) to NYC and I  really want to see them, even if for only a short time. Tomorrow is Mother’s Day. This will be my first since Jacquie was diagnosed with ALL. In the past, I have celebrated being the mother of two very wonderful and special children. I realized every mother feels her children are the best and I am no different. I have thanked God every day for bringing the two of them into my life, and blessing Torey and I with the honor of being Jacquie and TJ’s parents. My pride in them and my love for them knows no limits. Until this happened, I never thought that that I could feel prouder or love them more. But I do. They have shown such courage, strength and love for each other. Jacquie has endured so much, with more to come, and still continues to fight. TJ has stood by her and fought with her every step of the way, and when she falters, he is there to pick her up and help her to keep going. TJ has done the same for Torey and I. He has put his energy and his focus into this fight, and TJ will make sure it’s a win. As a mother, I couldn’t ask for more than what God has given me in my two children. I hope tomorrow, all of you mothers take the time to know how blessed you are and to let your children know how much they mean to you, how proud you are of them and how much you love them. You can never tell a child that you love them too many times. Jacquie and TJ, I love you both more than life itself. To everyone – KEEP BELIEVING.
May 9th 2008  – Day 78.  Jacquie was admitted into MSK for another fever. Her temperature spiked to 101 and she was taken in early this morning. Most likely, this is a reaction to her spinal tap and chemo infusion from the other day. We are awaiting her test results and x-rays from the lab. After an 11 hour stay in the critical care unit (the “emergency room” in cancer hospitals) a room was made available and she is very tired. Jax was able to eat a small amount of food and is now resting. More information will be posted as we recieve it. Check back soon and keep BELIEVING.
May 7th 2008  – Day 76.  We are now past the 3/4 point. Yesterday’s clinic visit went well, no new issues or problems. Jax’s blood still shows the anti-neutrophil antigen but her counts are not dropping so the doctor is ok with that. Great news – Jax has put on a little over 3 pounds, yeah!!! She still is not back to her pre-hospitalization weight but is definitely making progress. She has some new medicine to try in an attempt to get rid of the nausea and vomiting, we’re praying this works. Also good news, the increased dose of her heart medication seems to be working, her heart rate is almost normal now. On to today. We arrived at the hospital a few minutes early, only to be told that her chemo wasn’t ready yet, and we should come back in an hour. We were very happy that Uncle David was able to drive in from Philly to be at the hospital with us for this procedure because he kept us entertained and distracted while we waited. We went back to radiology/angio an hour later and than waited another hour and twenty minutes before they were ready for her. Needless to say, the waiting was very hard and stressful for Jacquie. She was already apprehensive enough about the procedure and having to have it at someplace other than Roswell; having it delayed made things even worse. She was used to the doctors and the way it’s done at Roswell and would have been more comfortable having it there, unfortunately, that wasn’t an option. However, once they took her in and she met the tech, and the doctors, she seemed a little calmer. I, being my normal nosey, question-asking self, proceeded to grill them with questions until I was satisfied that they knew what they were doing and we could leave her there in the room. At Roswell, Torey and I could stay in the room, behind a glass divider while the spinal tap was done, but not at Sloan. David and I had to wait in the waiting room. It took about 25 minutes, then she was transferred to recovery to be monitored for 1 hour, during which time she had to stay on her back to try to avoid a “spinal headache”.  When the hour was up, David drove us back to Hope Lodge, then he headed back to Philly. Thank you David, we both really needed you there with us, we love you! So now Jax is resting and we’re hoping for a good night’s sleep. Thank you all for your prayers and your love – it has helped get us to day 76 and will surely get us to Day 100. Tomorrow, remember to smile at someone who looks like they need it, sometimes that’s all it takes to make someone’s day a better one. Keep BELIEVING.
May 5th 2008  – Day 74 – Another ok day, they’re getting better as Jax grows stronger. She’s up and about more, and able to stay more energized during the day. Her appetite continues to slowly improve, and although she still has some stomach issues, we hope that tomorrows clinic visit shows an increase in her weight. We are also hoping that all her “numbers” are good. We are planning for the intrathecal chemo to begin on Wednesday, as long as her counts and chemistries are within the parameters. The weather today was very nice, warm with a little breeze, and Jax did some laps on the terrace. She is trying to teach me how to play a board game called Manacala (spelling?). I think shes hoping we go home soon so she doesn’t have to keep re-explaining the rules to me! The good thing for her is that she almost always wins. Tomorrow will be a long day, but I’ll try to write an update at some point. If not, I’ll write on Wednesday after the chemo. Today, when I was walking to the grocery store I was thinking about how much I miss everyone – family and friends. I was feeling really lonely and down. And then I started to think of some of the people here at Hope Lodge who have nobody here with them, and never seem to have any visitors. And once again, I realized how blessed we are to have all of you, if not in person, in thought and prayer. I started to remember some wonderful and incredible times that we have shared with all of you. And then I began to laugh out loud because some of the memories were so funny! I thought to myself how much more could a person ask for in life than to have shared that life with such special people. And no matter what the future holds for any of us, no one will ever be able to take away our past. And it is the wonderful memories of our past that many times makes us be able to face our uncertain future. Thank you again for BELIEVING.
May 4th 2008  – May 4th Day 73 and almost 3/4 of the way to our goal!!!!.  Yes – Jax did enjoy the pizza on Friday night and kept it down too! The deli next door did a great job for us and it was such fun to watch the transplant patients enjoy the pizzas. The caregivers also enjoyed having pizza too, because we are on the same “neutropenic/ low microbial diet” that the transplants are on. I think we’ve been craving “real” pizza just as badly as they were. Yesterday, Saturday, was not a really good day, Jax was sick again and then being tired followed right after. Although her appetite is improving a little, she still has periods of nausea and some vomiting, and that sets her back a bit. So yesterday was not too big of an activity day. Today, Jax seems to feel a little better, and has more energy. She ate well for breakfast and lunch, and then took a walk on the terrace. The sun is out today, and even though it is still cool, it’s warmer than yesterday and it’s not raining. I’m praying that today she can get through the day without being sick. That seems to be the one thing lately, that brings her down the most. The tiredness, headaches, leg soreness, and lack of appetite she is able to deal with better than the nausea and vomiting. So a good day is what I’m praying we’re going to have. This coming up Wednesday, Jax will have to start her first of 5 Intrathecal chemotherapy treatments. These will be spinal taps with chemo injected into her spinal column, as a preventative measure against any lingering leukemia cells getting into her spinal cord or brain. She will have to have this done once a month for the next 5 months. Jax has had these before, they are difficult and stressful. By this time next week, it will be one down and four to go. So family and friends, we hope you all had a good weekend and that the sun is out wherever you are. Be thankful you have people who love you-we are very thankful we have all of you. KEEP BELIEVING.
May 2nd 2008  Today is Day 71, May 2nd (yes, yesterday when I wrote the update I put down the wrong date-should have been May 1st, sorry, I’m easily confused these days). Today’s clinic visit went well, blood counts are up a little on their own, no Neupogen since April 22nd! Jax didn’t get weighed today, that won’t be done until next Tuesday’s visit. Hopefully by then, we’ll be seeing some weight gain, or at least no further loss. She had her Pentamidine respiratory treatment done this morning, it went better than the first time, probably because we knew what to expect and were ready for it. The secret, we found, is for her to be sucking on Sara’s famous lemon drops throughout the whole treatment so that she doesn’t taste the medication she is inhaling and then she doesn’t get nauseated and throw up! Tonight is a special night – we are having pizza. We’ve made arrangements with the deli next door to follow the hospital protocol for food preparation for the patients here at Hope Lodge. They agreed to make the pizzas special for them! All of us caregivers are very hopeful that this works out and that everyone is able to enjoy this treat, it’s been a long time for most of them since they’ve been able to have “real” pizza. So keep your fingers crossed. I hope the sun is out wherever you are and that your day is all it can be. Whatever happens today, remember to appreciate your life and the special people in it. With love to you all from NYC-KEEP BELIEVING.