DISCHARGED From Memorial Sloan Kettering
Cancer Center on Friday March 7th, 2008!! 
Days Completed in NYC: 99
Days Remaining: 11

March 31st 2008 – Day 39, only a few hours until Day 40 (and that means 2/5 of our 100 days are behind us). YEA!!! Jax slept a little better last night and was up earlier this morning, she looks great! She is getting some color back and her radiation “tan” is starting to fade a little. Today she smiled so much, most of the day actually! I went out to run an errand and when I returned, Jax said “guess what I did?” I was almost afraid to ask. She said she walked outside on the terrace for almost 1/2 hour by herself! WOW! That was huge, I was so surprised and proud of her. Then, we had dinner an she ate really well. I’m anxious for her clinic day tomorrow, she’ll get weighed and I’m hoping she’s gained or at least maintained her weight. So, we should get some news about the BOMO when we go tomorrow, and the cardiologist results also. We’re both a little nervous I think, not really knowing what to expect, but we are positive that the news will be good. Say a prayer tonight for her. Mike, Val and Sara – thank you for the tears of laughter. Family and friends, you’ve helped us through the last 6 months and we couldn’t have done it without all of you! Each and every one of you hold a very special place in our hearts, and our lives. At a time when we felt desperately helpless and confused, you were there to support us and give us hope. If everyone in the world took care of each other the way you have all taken care of us, what a very wonderful world this would be! Keep BELIEVING, and take care of each other.

March 30th 2008 – Day 38 and counting. Slow day today but a good day. Jax slept in, she didn’t sleep well last night but felt better when she did get up. We spent the day watching movies and walking on the terrace on the 6th floor. The city was surprisingly busy today, so we avoided the street crowds and walked at Hope Lodge outside. Jax and I are still working on the cupcakes, yes there are still some left and yes we did share some with the others on our floor. Last night Jax dreamed of having meatball subs so I went out early this morning to the store and bought all the makings for them. Tonight we had them for dinner and Jax and I used a “secret ingredient” to make them. They were great and Jax ate the whole sub I was soooooooo pleased! She’s doing so well and I’m sure at the next visit the docs will be pleased too. We aren’t sure what we will do tomorrow (Monday), we’ll see how Jax feels when she gets up. Hopefully she have some energy and we can do another outing somewhere in the city. Thank you dear family and friends. We  need you to keep believing.

March 29th 2008 – Day 37 and counting. Closing in on being 2/5 over and behind us.  Yesterday and today (Fri. and Sat.) were fairly easy going days. Not a whole lot going on from the hospital aspect, which is good and bad. Good because Jax continues to be progressing well and uneventfully, but bad because we are anxiously waiting news and results from the cardiologist and from the bone marrow biopsy. We are really hoping that Tuesday is the magic day when we will have some of our questions answered. Yesterday, we went for a short outing and Jax did well, her endurance is improving and she is able to be on her feet for longer periods of time, although not a long as she would like. We made strawberry cupcakes today, and Jax is currently enjoying them, and not having to be concerned about how many she eats. We are just trying to follow doctor’s orders and get her weight back up, and cupcakes seemed like a good idea. The weather here is warming up and we hear that soon spring will arrive to stay. I’m thinking that we will have to start exchanging winter clothes for our lighter spring/summer clothes soon, and may need to have Torey and TJ ship a box of clothes down to us. Sorry to tell you this, but we will be wearing our lighter clothes before those of you back home will be.The past few days have been difficult for Jax, it’s hard for her to have her life on hold, when everyone else is moving forward, but she is dealing with it and trying to stay focused on recovering and getting well, so that she will soon be able to move forward with her hopes & dreams and her life as she believes it should be. Please continue to BELIEVE in her and her dreams, as we do. Jacquie’s dream WILL come true.

March 27th 2008 – Day 35. Today Jax had her clinic day at Sloan. We had hoped to have some results from her first bone marrow test however, we were told that the first results would not be available until her appointment with her primary transplant doctor on Tuesday April 1st. Then, we will have to wait another 2-3 weeks for the remainder of the chromosome results to be in. The good news today is that, once again, Jax’s counts are holding steady, so she didn’t need a GCSF shot, platelets or red blood cells. The nurse practitioner we met with today said that so far, everything is “on course” and as they hoped it would be. We are finding NYC to be an ok place to visit but we would never be able to live here for the long term. The drivers are terrible, and each time we get in a taxi, we pray we arrive at our destination in one piece! The driver we had on the way home from the hospital, not only took the long way home, but gave us a continual running commentary on how lousy (not his word but I cleaned it up) the other drivers are. During this whole time, we were in fear for our lives because his driving was so bad! It’s been rainy and dark all day today, and I’m not sure when the weather is expected to improve, since the weather people here aren’t much better than the ones at home in the accuracy department. We never really know what to expect until it happens. Jax will be going for another short walk if it clears up for a little while, or we’ll end up doing hall laps indoors if the rain continues. We still have no results from the Halter monitor test yet, so Jax isn’t overdoing the exercise until we know for sure that it is ok. We made sugar cookies today, and may try some cupcakes over the weekend.  To all our family and friends, thank you for your continuing support, prayers, and love. Remember, each day is a gift,and gifts are meant to be shared. Tell the people in your lives that you love them and remember how important they are to you. Don’t wait until tomorrow.  And for Jacquie, please keep BELIEVING.


March 25th 2008 – WE ARE AT DAY 33, 1/3 of the way through our 100 day journey!!!! We had a great family day today! We made the most out of our last day together (for a little while). Torey and TJ leave to go back home early tomorrow morning. We’re going to miss them so very much. Having them here is such a comfort that the thought of them being so far away is scary. We know they’ll be back as soon as time permits, but until then, it will be hard. Jax continues to have pretty good days, her activity level and appetite are good, and her spirits have been great the past few days. We hope to soon be able to plan some outings outside to see some of the sites. We won’t be able to be out for very long, and will most likely have to take a taxi to places, but at least the scenery will change. So for now, goodnight to all our very wonderful family and friends and remember to love and live the most you can, every day of your life.  And remember- keep BELIEVING.


March 24th 2008 – Happy day after Easter to everyone. Day 32 is almost over and it was a full day. The appointment with the cardiologist went well. The results of the Echocardiogram done last week showed that Jax’s heart function has decreased a little since the transplant. This means that it is not functioning quite as well as it previously was, however, it is still within the normal limits. The doctor said that this could just be another result of the chemo and radiation (they take such a hard toll on all the body systems). They drew some extra tubes of blood, in addition to the ones already scheduled, to run some new tests. Jax also is now hooked up to a Halter monitor, a very small box with electrodes attached to different parts of Jax’s body, they will give a 24 hour read out of her heart’s electrical activity. It’s just like a very small EKG machine. After the results of the blood and the EKG are reviewed, the doctors will then decide the next step. They may want her on some medication to slow her heart rate down so she isn’t over taxing it as she tries to build her strength back up. We should know by Thursday or Friday. The bone marrow went okay as well, it’s always a very stressful event for Jax, not just physically but emotionally as well. This time, even more so because it is the first one post-transplant, and will give us our first real indication on how the engrafting od the transplant is going.  She received another GCSF shot today because her counts had dropped again, but the decrease was not as much as last week’s drop, so the doctor was pleased. We finished earlier than expected, so WE WENT TO 2 STORES!!!! We stopped at a store that carries our Vera Bradley bags (naturally) to look around. TJ was at the NYC auto show with “cousin” Ryan and met us at NIKETOWN where Jax bought new sneakers, so hopefully her feet won’t be so sore and swollen after her walks. Everyone is tired now. As for yesterday, I hope everyone’s day went as well as ours. Torey and TJ drove in from New Canaan about 3:00 and we had our dinner together then spent the rest of the evening watching funny things on TV in the common area. It was so wonderful to be together, it didn’t matter where we were, just that we were all in the same place. We hope you all know how much you mean to us, and how we wish we could thank you individually. At the time, that’s a task that is beyond our ability, but we will make every attempt to let you each know how much we appreciate what you have done for us. When we think of how hard this all is, we know we are blessed, because without all of you, it would be so much harder. Be good to yourself and be good to others, we are all we have. And keep BELIEVING, we do.


March 22nd 2008 –  Hello to all our family and friends. Tonights message will be brief. Torey and TJ arrived yesterday and it is so good to have them here and to be a family again. Our wonderful friends, the Christie’s (Aunt Indi, Uncle Pat, Anjalie, and Ryan) are once again providing a place for Torey and TJ to stay while visiting. They have truly been wonderful, having their lives disrupted for such long periods of time with houseguests. We are so thankful for their hospitality. Jax has done well the last two days and we pray it continues. To all of you, our hearts are filled with gratitude for all you have done for us, and all the prayers. We know that without all of you, this journey would be unbearable. You have given us hope and have shown us how very blessed we are to have such wonderful people in our lives. So, tomorrow, whether you celebrate Easter or not, celebrate life, celebrate what you mean to those around you and celebrate the belief that we all need each other. Celerate that we all BELIEVE.

March 20th 2008 –  Day 28 and counting. Clinic went well,  Jax had her ECHO and we’ll meet with the cardiologist on Monday to get the results and the game plan for her rapid heart rate. Her blood work was all within normal limits (abbreviated WNL by medical personal), so no GCSF injection, packed red blood cells (RBC) or platelets were needed today. Actually, the clinic time was short, only about 2 hours but then we had to hang around the hospital for another hour waiting for her prescriptions to be filled. It was much better than Monday’s visit. Jax is tired today, so no walking outside but, she did a lot of walking today at Sloan so she still had some exercise. She is feeling a little down, and I’m counting the minutes now until Torey and TJ get here. We both need some reinforcements. Keep BELIEVING.

March 19th 2008 – Day 27 and counting down. Jax is continuing to do well, although her energy level fluctuates a lot. She needs a lot of sleep and some nights she sleeps poorly, so she has to sleep later into the morning or rest in the afternoon. This morning, after a poor night sleep, she slept in late. After breakfast/lunch she had a visit from Uncle David and the two of them took a walk, and not just around the block! This was a long one, she went down two full city blocks and over one, which is a long way for her. She did great, and Uncle David was very pleased that he was the one to go that far with her. Jax has an appointment to have an echocardiogram done in the morning because the doctors want to check out why she continues to have a fast heart rate. They feel it’s probably from the chemo and radiation, but just want to check to be sure. Then they may put her on a medication to slow it down a little, to keep her heart from having to work too hard. She will also have more blood work done to check her blood counts. We are really hoping this visit takes less than the 10 hour one she had on Monday! Just one more thing before signing off…Tomorrow, at some point during the day, make a special effort to do or say something nice to someone you don’t know or you usually don’t pay much attention to. I’ve watched Jax as she meets new people here at Hope Lodge or at Sloan Kettering and just a small act of kindness means so much to people, and, people have commented to me about Jax and how caring she is and how she makes them feel better just by being around them. What you all have done for Jax, and our family, you can pass on to others, and hopefully they will pass it on as well. It takes so little time to say something nice, but as we have found out, the words keep us going. Jax has taught us so much and if we can teach others, then we have started to be able to answer the question “Why did this happen to Jacquie?”  Jacquie was meant to teach and to share, and it’s up to all of us to help her, by passing on the good things that life has to offer. And as always, it’s up to us to keep BELIEVING.

March 18th 2008 – Into the next quarter – Day 26 is almost over. A good day today. Jax slept in this morning, tired from yesterdays outing. Eating continues to go well, and for the most part, her taste buds have recovered to almost normal. There are still some foods that don’t taste the same as they used to, but there are enough that do so that Jax can enjoy a variety of things to eat. We are reminded at each clinic visit how important it is for her to eat well and not lose any weight, because the new stem cells need a great deal of nourishment to engraft. Jax didn’t go out today for a walk, it was quite cold here, but she will do laps in the hall before bed so she gets her exercise for the day done. Jax’s godmother, Aunt Indi, stopped in from New Canaan (CT) today for a brief visit. It was great to see her and both of us enjoyed our time with her a great deal. Tomorrow, Uncle David is coming in from Philly for another visit, and we’re both looking forward to his visit also. THEN, on Friday, Torey and TJ will arrive and stay until next Wed. We can’t wait to see them!!!! It’s so hard to be apart for such long periods of time, especially since we just became a family again. When this is over, we are all going to take some much needed family togetherness time. Before signing off, we just want to thank all of you who continue to support us, pray for us, and share your love with us. Jacquie and I look for a free computer whenever we can, and read the messages you write. Some make us laugh, some make us cry, but all give us strength, courage and hope, and let us know that we are not alone in this fight. We know that together, we will continue to BELIEVE and dream of a future free of leukemia for Jacquie.


March 17th 2008 – While you are all probably out celebrating St. Pat’s Day, we are celebrating DAY 25- 1/4 of our 100 day journey is past!!!! Today, Jax left for clinic about 11am, she had blood work, a transfusion, and possibly another GCSF shot scheduled. The transfusion was the first of monthly Immuno Globlin IV transfusions she will be getting to help protect her from certain types of infections. Since her whole immune system was wiped out with the chemo and radiation, her body no longer has the defenses to fight off infections and must develop new antibodies to do it. These IVs will help to get her body”s immune system fighting against some of these potential problems. The whole day took way longer than we expected and we didn’t return to HL until almost 9pm. Jax was really wiped out, physically and emotionally. Each time a new procedure or drug is introduced to her, part of the pre teaching involves letting us know possible side effects, problems and complications that might develop. Some of these are common and expected, and some more rare, but still, they are always circling around in our heads making us wonder how HER body will respond. Thankfully, Jax did pretty well, but each time is as if it is the first time, so we never know. We try to stay positive and expect the best! Jax also had another GCSF shot to keep boosting her white blood count, which still continues to roller coaster. Her hemoglobin and platelets are holding steady in the “safe zone” for now, so no packed red blood cell or platelet transfusions have been necessary the last 3 clinic visits. Last night, Sunday, we took another walk around the block, and Jax did well. She’s tired by the time we return but I know she is happy with her progress, as we all are. I am so proud of her and how well she is doing. I wonder where she finds the strength some days to stay so positive, when I just want to curl up in a ball and cry. I want so badly to take this from her and make it mine, to give her back her life as it was. Then, I look at her and realize that although this has changed our lives forever, our future will still be wonderful, because Jacquie has taught us what it is to really live life to the fullest and to love every day. And all of us will share that with people around us, and just maybe, our world will be a better place because Jacquie is sharing herself with us. I BELIEVE that this is the way it was meant to be.


March 15th 2008 -Day 23 Today I had a great day! Mom did some shopping and filled the fridge with yummy treats for me to eat. Because she bought so many goodies, I spent most of the day in the kitchen. Oh, which reminds me, funny story… For the last few days/nights the people next to us have been blasting their tv. I can tune it out, but my mom can’t. She’s been threatening to either call to tell on them or pound on the wall. I would be embarrassed if she did either so I tried to convince her to go over and ask them nicely to turn down the tv. She told me I should…. because they would “respond better”. Oh, is that because I’m the kid with cancer? lol. Well, last night it was on really loud so she tried calling the on duty manager, who didn’t pick up. I thought she might start hitting the wall so I went over. I knocked on the door and the man answered. I said “I’m sorry to bug you this last but” and he shouts, “What, I can’t hear you”. I tried again but still he interrupted me again and said, “can you take off that mask, I can’t hear you”. Finally I said, “I’m not a light sleeper and your tv’s really loud. Can you please turn it down? “Oh, sure no problem” he said and closes the door. I guess my bald head can serve a purpose. Back to why I’m bringing this up… obviously this man and his wife have been M.I.A. since they moved in. We never see them in the halls, kitchen, common room etc but today, I had the pleasure of sitting across this man and his wife for every meal. I probably shouldn’t have, but I felt like an idiot. After dinner my mom wanted me to go for a walk outside. Even though I didn’t, I did anyway. I’ve only gone around the corner and back, but, tonight…. I went around the whole block! I couldn’t have done it without my mom. I’m really glad she pushed me because I wouldn’t have done it if she hadn’t. I’ll think we’ll celebrate with… what else, food! Haha. It’s about that time for a celebration snack and bed. I have a busy day ahead of me, which includes eating, walking around, eating and watching tv. Haha. Thank you all from the bottom of my heart for being in my life. Until next time…. keep in mind what’s important in life, be a role model to those around you, smile and ALWAYS believe! Thank You. Love Jax.


March 14th 2008 – Day 22- Glad it’s almost over. The day started out rough for Jax. She woke up feeling nauseated and with some unexplained stomach pain. Her appointment at the hospital was at 10:00, luckily, because by the time we arrived she was almost doubled over in pain and unable to walk. We arrived on the clinic floor by wheelchair and were seen right away. Jax went for her scheduled blood work and then was seen by the nurse practitioner. We were very happy to know that she wouldn’t have to wait in the urgent care (what they call the emergency room) area to be seen. After being checked out, the NP thought that the pain might be due to her Prilosec being discontinued and the oj she had for breakfast. Her stomach lining might still be too irritated from the chemo and the radiation to tolerate the acid from the juice without the medication to protect it. So, after getting sick while she was there and the stomach pain, we were both rather down. But then the good news- the GCSF shot she received on Wednesday did it’s job, her white blood count was up over 11,000 and more than 9,000 were neutrophils. This means her new stem cells are working-YEAH! So anyway, we came back to HL and Jax slept for almost 3 hours. Her Uncle David and Aunt Elizabeth stopped by to see her before Elizabeth’s concert at Carnegie Hall, but Jax didn’t wake up and come down to see them until they were leaving, but at least she was able to see them for a minute. Jax is feeling better now and hopefully we have this problem figured out so we can try to avoid it in the future. So many of the problems Jacquie encounters are solved through trial and error. There isn’t always a set solution to a problem and what works for one patient may not work for Jax. And sometimes, the solution doesn’t always work the next time. It gets frustrating not having answers. Each day, however, brings us closer to the goal of coming home and Jax will do whatever it takes to get there. As long as we all BELIEVE, we will get her there.