April Updates From NYC

 

April 29th 2008 – Day 68, more than 2/3 of the way towards our goal. Update on Jacquie’s clinic visit with the doctor today, her results for the blood work from over three weeks ago are in and Jax definitely is positive for the anti-neutrophil antigen that the doctor thought it might be. This means that, for some unknown reason, her body is not allowing the bone marrow to produce neutrophils to keep her white cell counts up where they should be. The doctor is very pleased with her red blood cell and platlets counts, but the WBC/neutrophils haven’t stabilized yet. She said that this problem “should” resolve itself, but was unable to commit to a time frame in which she thought this would happen. I didn’t have the nerve to ask how long we wait or what we would do if it doesn’t resolve itself, I figure we’ll cross that bridge if and when we get to it. For now, I’m planning on it going away on it’s own and SOON! The other bit of news that was a little downer was that Jax has lost another 2 pounds, making a total loss of 7 in the past 2 weeks. This is a concern, of course, but one of the medications she was put on while in the hospital this past admission causes a great deal of nausea, stomach upset, and therefore a loss of appetite.  The good news is that as of today, Jax doesn’t have to take the med anymore, so the Dr. is hoping that once she is off the med, she’ll be less nauseated and her appetite will return to where it was before she was hospitalized. She has her next appointment on Friday then one next Tuesday. If by that time, her appetite hasn’t returned and she is still losing weight, then the Dr. may have to put her on an appetite stimulant. Once again, I think Jax will be able to bounce back on her own, she has before and she can do it again. Her sleeping splints seem to be starting to help, Jax said her calves are feeling better in the morning, so the stretching that the boots are giving her legs must be working – YEAH! This Friday Jax will have her second Pentamidine treatment, this is a respiratory treatment to help Jacquie’s immune system build defenses against pneumonia. The whole thing takes about 20 min. but is tough for her beacuse she has to sit under a plastic tent, similar to what the old oxygen tents used to look like. It’s intimidating, to say the least, but Jax did great the first time, so I’m sure she’ll do well again. I see all she has to endure and how well she handles it and I am in awe of her strength and courage. I don’t think I could do it. Thank you, family and friends, for understanding our pain and for helping us to find ways to express and deal with it. Sometimes I just want to scream at the injustice of it all, not just for Jax, but for all the people here at Hope Lodge, and patients everywhere, who must daily fight to keep the cancer from destrying their bodies, and messing with their minds. The struggle is not just physical, the emotional battle is just as difficult if not more. The next time you see someone who is sick, or hurting, pray to give them some of your strength and courage, so that they can continue their fight.  KEEP BELIEVING

April 28th 2008 – Day 67. It’s hard to believe it’s been 7 months since our lives were turned upside down. But it has, and we’re still moving forward. The visit with TJ and Torey finished up great but went by way too quickly. Jax did great with her cheeseburger on Sat. night, it was the first time in almost two weeks she ate all her food at one sitting! Saturday night all four of us went to the hotel for a Hirsch family slumber party. It was lots of fun and it was incredibly great just being able to not have to say goodbye at bedtime for the first time since Feb. 9th. We were lazy on Sunday morning and slept in for a while, then hung out for the rest of the day. Last night, saying goodbye was tough. For a few days it was almost like we were a family again. We watched movies and laughed and ate like “normal” families do. And it was ok for me not to be with Jax because I knew that Torey & TJ were there to take care of her, although I was still a little stressed to be away from her. It’s hard to “let” someone else be responsible for her care, but I realize that both Jax and I need breaks from each other sometimes. Today, Monday, Jax did well spending most of the day up and about. She is slowly getting some energy back and with that, her appetite. Dinner was steak and potatoes and Jax ate most of her meal which made me VERY happy. I know that when she is eating, she is feeling better and will get stronger. Tomorrow is clinic day meaning more bloodwork and a visit with her doctor. Please say a prayer that her numbers are up… we really need them to start staying up where they belong. Also, let’s hope she’s put some weight back on. Since our weekend was so wonderful with our family, my wish for all of our families and friends is that you take time out of your busy lives to spend some time with your families, to share laughs and fun and memories. Sometimes, the memories are what help to get you over the most difficult times. Thank you, family and friends, for the memories.  KEEP BELIEVING.
 
April 26th 2008 – day 65. Yesterday, Jax had her clinic appointment and it went well. Her counts went back up again, since the Neupogen shot on Tuesday. Now, if we could just find a way to keep them up without the shot, we’d really be cruising along the fast track out of here. She also saw the rehab medicine doctor about the tightness in her calves. He feels that, although it can be a symptom of graft versus host disease (GVHD), that it is unlikely because that usually affects more than one joint or muscle area. He said it could just be the lack of her normal activity for such a long time and then trying to get back to her pre-transplant level. He prescribed some special “sleeping boots” for her to wear at night to help keep her foot more flexed while she sleeps. Hopefully this will make them feel better. On the way home from clinic, the four of us went shopping again….Jax and TJ always manage to find a little something that they like. It was fun, and tiring, but we had a good time again. Last night, TJ took his turn being Jacquie’s caregiver. He slept over at Hope Lodge with her and once again, I spent the night away from her at the hotel. It was hard again, to turn over her care, but those of you who know TJ and Jax and the very close relationship they share know that she couldn’t have been in better hands. I had all her meds and times written up and TJ did a great job. She got everything she was supposed to and on time too! Plus, she had the added bonus of being able to spend a lot of time with her big brother, just the two of them. I know it meant a lot to both of them. Jax and I are going to really miss them more than ever when they return home on Monday. Tonight we are planning to do hamburgers for dinner, obviously at Jax’s request. I hope that she enjoys them, her appetite is still not back since being in the hospital, and she needs to put back the weight she lost. We’ll keep working on it! I hope the sun is shining where ever you are reading this. The sun is out here, and it gives me a feeling of hope and strength. The spring signals a time of rebirth and new life, and that is what Jacquie is going to experience. This spring will bring all of us a greater appreciation for life and for each other. We all need to know that life is a gift, one that is meant to be shared with those we love. We need to not be afraid to open ourselves up to being loved and loving back. Be kind to each other and to yourselves, and remember to KEEP BELIEVING.
 
April 25th 2008 – day 64. Yesterday the four of us went on an outing. We went to see a movie! We saw “Forgetting Sarah Marshall”. It made us all laugh and it felt great to be doing something “normal” again. On the way “home” we we unable to get a taxi, rush hour in NYC, so Jax managed to walk the 3 blocks back to Hope Lodge. She was exhausted by the time we arrived but SHE DID IT!!!!!!The weather here was very nice yesterday, so we figured the movie theater would be almost empty, which it was, so it was ok for Jax to go because she still has to avoid crowded areas. Then, last night I spent my first night away from Jacquie. I stayed at the hotel with TJ, and Torey took over the caregiver duties. I have to admit- I was very nervous about it. It’s not that I didn’t feel Torey could take great care of her, I just felt as though I shouldn’t leave her. I thought I would be able to sleep like a log, but I still woke up for her scheduled medication times and to check on her. By 6:30, I was up to stay. But it was nice to be able to turn over the responsibility for a while. Today, Jax has clinic for bloodwork and an appointment with the rehab medicine doctor to take a look at her calves, they’ve been bothering her a little. She doesn’t seem to be able to get them stretched out. So, today you all need to remember to be considerate and caring to those around you, we all need some TLC once in a while.  KEEP BELIEVING.
 
April 23rd 2008 – day 62. HAPPY BIRTHDAY TO TJ – Jacquie is back to Hope Lodge having a good day and is feeling a bit better. She slept in while TJ and I arrived this morning. She is still feeling weak from the hospital stay and in need of rest and Sharon as well. We had a nice visit, did some errands this afternoon while Jax took meds and tried not to get sick. She showered and washed her “hair” since its just starting to show a bit now. Its pretty cool seeing some fuzz that will stay with her and finally keep growing. She is sooo cute. We had some bakery goodies for TJ’s b-day and like many occasions, we have a good time together and will make up for our lost time. We will be in the city for serveral days and hope to get both Jacquie and Sharon out for some much needed and deserved breaks. As a parent, its really awesome to watch your children that had there many moments together as kids now as adults, be everything to each other. They really enjoy each others company and light up a room together. Enjoy the many great moments life brings, sometimes you have to look closely, or in a different way to find those moments when life is toughest but, nevertheless they are there. We Believe in Jacquie just as you all have, and we cant thank all of you enough.
 
April 22nd 2008 – April 22 and the start of day 61. Yesterday was a busy day for Jax. Early Monday morning (about 3:30 am) she spiked a fever again. So, that meant another round of getting stuck for blood and blood cultures, and other tests. In addition, another chest x-ray was done. This is standard procedure with high fevers, to look for infections that might be going on in the lungs. Mid-afternoon, the doctors came in to let us know that there was a “slight infiltrate” that showed up on the x-ray. They said it was very small, and felt it was nothing to worry about. However, just to be sure, they ordered a CATT scan of the chest, to get a better idea of what was going on. That meant another trip down to the 2nd floor to the CATT scan unit. In the meantime, Jax’s Aunt Elizabeth called to say she was in NYC from Philly. So, while we were down in CATT, she came to see Jax for about 2 minutes. It was so good to see her, even for that short of a time. By the time the test was over and Jax was back in her room, she was really exhausted. She slept for a while, woke up, had a little dinner (her appetite is a little better), watched some TV and went back to sleep. It seems as though each night she is able to get less and less sleep, with all the interruptions- I can’t wait to go back to Hope Lodge so she can start getting the rest she needs. Jax had been so great throughout all of this. It’s been hard for her to be back here after being “free” for 55 days. And although she is well aware of these bumps in the road, it is still discouraging and upsetting. At times she is very angry, and other times so very sad. But, eventually the old Jax finds her way back, and she moves forward. She is incredible.  We are hoping for a good day today. This would mean that Jax is taking in more fluids and food, is able to be out of bed for longer periods of time, has no fever or other issues, and smiles more. So say a prayer for Jax today, and maybe today or tomorrow they’ll think about setting her “free”. Today would be a good day to let those you love hear it from you. Today is a good day to be thankful for the people in your life that help make you the person that you are. Today is a great day for me to thank all of you- family and friends for being here for us. Keep BELIEVING.
 
April 20th 2008 – Day 59 – Hello familyand friends- This is my first update in about a week, so bear with me. First, thank you to my sister Christine for sending this laptop down to us in NYC so we have some contact with the outside world. Jax is not on the bone marrow unit this admission, she is on the 17th floor. It is very different here, all types of patients and cancers, not just transplants, as it was on the 8th floor. The rooms are smaller, no couch to sleep on, just a fold out chair and no computers in these rooms. The routines are different too, and we’re both having a little trouble adjusting to the way things are done, but we’re getting by.  Jax’s temps have gone down and seem to stay between 99 and 99.3  The doctors feel they might never be able to pin-point exactly what caused the fevers in the first place, they think some type of virus possibly. The fevers really take a toll on her, however.  Her appetite and energy have taken a plunge, and she’s lost about 5 pounds.  We know that once she is discharged she’ll start to get her appetite back and put some of the weight back on. Once she is eating better, we’ll start the process of getting her strength and energy back, the same way we did when she was discharged after the transplant. This little set back has been tough on Jax.  It’s not uncommon, and it is actually expected for things like this to occur, everyone calls them “little bumps in the road.” Jacquie will get through it though, and will be stronger for it. She had a great day yesterday! Her Aunt Sheryl, Grandma Bree, and cousins Danielle, Angela and Marianne came to NYC for a quick visit. Unfortunately cousin Kerri couldn’t come to, but she will be down in the future, she was missed by all. The family being here was good for Jax, they made her laugh with stories of their adventures in the Big Apple and the greeting with sombreros and Pedro refrences. It was hard to see them leave today, but it was so good to see them and spend time together. Well this is all the energy I have for now. We are finishing DAY 59, tomorrow will be 60 and 3/5 of the way behind us. Today is one of the days when I feel so thankful for all of you. I was able to read messages for the first time in 6 days, and just when I wondered where I would find the strength to keep doing this- there you all were!  Your words of prayers, encouragement and love, and even your funny stories reminded me that we are not alone down here, ever. We are just a click away from you, and when I’m not sure I can keep going you tell me I can. And because of that, Jax knows that she can keep fighting too. We love you for all you have done and all that you mean to her recovery. Never stop BELIEVING.
 April 18th 2008 – Day 57 – For Sharons Birthday, TJ and I wish you a happy birthday from yesterday. We know from last Christmas that sometimes special days have to be celebrated on different days. We will have lots to celebrate soon! Jacquie is in Sloan under the Dr’s care to get her fluctuating temperatures under control. They have taken blood tests, x-rays but nothing has been pinpointed at this time. She is on antibiotics which seems to be stabilizing the temps. to some extent. Hopefully, we will know more tomorrow and the light at the end of the 100 days will shine a little brighter as Jax starts feeling a little better. We all develop amazing inner strength in the power of positive beliefs. The collective “WE BELIEVE” for Jacquie demonstrates an endless circle of power and support that we so thankfully appriciate from all of you. Allow me to share the Essence of Today with you: “I expect to pass through this world but once. Any good I can do, or kindness I can show, let me do now, for I shall not pass this way again.”   We Believe
April 16th 2008 – Day 55. Jacquie’s fever did not decrease at all today and Torey had to return home this morning. Jax felt tired most of the day and then her temperature elevated to 101. If it reaches 100.4 she needs to go back into Sloan so the doctors brought her in and began more blood work to get to the bottom of her fever. It is still unknown if her spiking temperature is from a virus or her shot last week. Jacquie is set up in a room now and she is currently resting. A chest x-ray was ordered and she will be taken down anytime now and then hopefully, she can sleep through the night without having to get up for too many vitals. Check back tomorrow, more information will be updated as its made available from her blood cultures and her x-ray results. BELIEVE, always.
 
April 15th 2008 – Day 54. Yesterday and today is more of the same. Jax is still running a low grade fever. She is feeling tired, appetite is down, and just not her usual self. She has been resting more, checking e-mails and watching a couple movies. We went to her appointment at Sloan this afternoon to have blood work done and to talk with Dr. P. Jacquie’s lingering temps may either be from a virus or possibly from last weeks treatment. They are staying on top of it and will narrow the possibilities down when more blood culture results come in and with monitoring her signs and symptoms as more time passes. I have the honor of writing this update since I’m in town – Its my first update. I was in Long Island for the Level 8 State Championships and enjoyed Torri and Sarah from our gym run through some of the finest routines they have done this season. Their floors were awesome and I’m proud they remembered most of their corrections since our good friend Val was judging floor. I wish I could have bussed all the judges, club owners, and coaches into the city who asked and expressed their wishes to Jacquie. It never fails, every meet I attend, the pouring of kind words and thoughts never stop and I do my best to pass them along to Sharon and Jax. What great people to be able to spend time “working” with. Torri and Sarah came into the city to sightsee for a couple days with their parents and they were staying only blocks away from Hope Lodge. Yesterday I walked them over to see Hope Lodge and Jacquie and Sharon came out on the 6th floor balcony were Jax often walks. The girls waved hi and blew kisses to each other. Torri’s Mom and Dad were kind enough to invite me to stay over in the city so I could spend more time at Hope Lodge today. Last night I had the pleasure of having dinner with an old friend, Paul Simon. He and I grew up in the sport of gymnastics, at Buffalo Turners, Northeast Y, and then in High School – he at Williamsville South and I at North. We were State Champions together our senior year. I know he was a better gymnast because I was always working toward some of the many accomplishments that he had already achieved. Paul is battling Lou Gehrig’s and has recently returned from Ecuador where he sought treatment. I know Jacquie has a tremendous following and all your good wishes and prayers are working for Jax. Please say one for Paul today, his unwavering courage and strength would touch your heart, it certainly did mine. I am very fortunate to have the opportunity to spend as much time visiting Sharon and Jax as I do. Sharon has a birthday this Thursday and I know her birthday wish is going to take some time to come true, however long in the future, it will. She is doing an incredible job, as is Jacquie.  I want thank TJ and our wonderful staff at the gym for allowing me the time away and also our good friends Indie and Pat for opening their beautiful home to us in New Canaan, Conn. anytime.
To walk through life being touched by such adversity is to be enriched by those it falls upon. We are all better people for walking with Jacquie in this life and to be able to feel an inner strength and power in the words we all share “WE BELIEVE”. 
 
April 13th 2008 -DAY 52. Jax is still feeling the effects of Friday’s IVG infusion. Her temp remains above normal but its not over 100.0. I spoke with the doctor again today and he said pretty much the same thing as yesterday, that the low grade temp is most likely due to the infusion and it should start to go back to normal within a few days and he said “try not to worry.” Oh yeah, like that’s going to happen anytime soon. Torey was here today for most of the afternoon, but Jax was only down on the 6th floor with him for a short while. Like yesterday, she slept most of the day. So I stayed down on 6 with Torey, watching a movie and went upstairs to check on Jax, do temps and meds about every 1/2 hour. She ate a little better tonight for dinner, so hopefully her appetite will return soon, it’s been a while since she’s turned down food, or told me she’s not hungry, it’s rather un-nerving. I hope tomorrow is warmer and the sun is shinning, Jax hasn’t been out walking in 3 days and needs to get outside in some sunshine. Torey will be coming in again tomorrow, so maybe we’ll all be able to get out together. So, goodnight to all our very wonderful family and friends. I hope all of you are taking care of yourselves and each other. And remember, tell the ones you love that you love them. Keep praying and keep BELIEVING. We miss you TJ and we love you so very much.
 
April 12th 2008 -DAY 51 Yesterday didn’t go exactly as we had hoped. Her visit to Sloan clinic for the IVG went better than expected though, for a change. I think the earlier time in the morning had a lot to do with it. They were not behind, and the pharmacy had the infusion ready to go in a reasonable amount of time. Her blood work was good, counts were steady, and we left there about 2 hours sooner than expected. However, about 5:00pm, Jax said she didn’t feel well, so we took her temperature and it was 99.6. The hospital requires that we call them for any temps 100.4 or higher so I didn’t call in, but continued to monitor it. It went as high as 100.0. but no lower than 99.2 all during the night and into today. I called the hospital about 1:30 and spoke to the doctor on call, who said this could be a normal response to the IVG she had yesterday. He told me to continue to check it and if she goes to 100.4 or higher, or develops any other symptoms to call right away. Torey came into the city last night about 6:30, he’s here for the weekend for a meet on Long Island. He brought Jax balloons that said “’50” on them to celebrate day 50. Although we couldn’t do much celebrating, it was comforting to have him here. He left about 10:30 to go back to Indi and Pat’s house. Today, Jax pretty much just stayed in bed and rested, she didn’t get much sleep last night so I hope tonight is better. I had a short but wonderful visit from a very good friend, Dawn, today. She and her husband, Jim, stopped by on their way down to Washington to visit their daughters. Having her here reminded me how blessed we are to have such wonderful friends to stand by us during this difficult time. And she told me we are not alone, that we have so many people praying for Jax. It was a very emotional visit and meant a great deal to me. We are very blessed to have such incredible family and friends. Once again, thank you all for not leaving us to deal with this alone. BELIEVE.
 
April 10th 2008 -DAY 49 !!!!!!!!!!!!!!!!! Tomorrow is an early day, we have to be at Sloan by 7:15 am. Jacquie has an appointment at the infusion clinic to receive her second dose of immunogamma globulin (IGG). This is to help her immune system continue recovering from being knocked out by the transplant. It will be a 4 hour IV transfusion once it is started, but it may take up to a couple hours to have the medication and everything else ready to go.  After that is over and done with, she has a follow up appointment for blood work to check the response to the GCSF injection she received on Tuesday. It will be a long hard day for Jax. Luckily, today was a much better than than the past few have been. First off – it was warm and sunny, and that does wonders for anyone’s emotional state. Jax walked on the terrace three times today and also did a Yoga class. The class went much better than last week and Jax was feeling good when it was over. You can’t imagine what a wonderful feeling it is to see her smiling, to see her feeling good, to know that for today – the cancer DID NOT get the best of Jacquie Hirsch! Today was a great day, and tomorrow is Day 50. Please pray that Jaquie’s halfway point is another great day for her, even if she has to spend it at Sloan. Torey is coming in tomorrow for a visit, and I know she can’t wait to see him (I can’t either). So family and friends, you are doing a great job, you are so very special to us and Jacquie’s recovery. Be good to yourselves and to others. Learn from Jacquie, and continue to BELIEVE. Were almst halfway there. TJ and Torey, we love you both so very much.
 
April 9th 2008 – Today is Wednesday, April 9th and Day 48. Can you BELIEVE it? We are getting closer and closer to the big day #50. Then what, you might ask. Then we start counting down to day 60, when we will be 3/5 of the way towards our goal. I know it seems as though all we do is speak in numbers: days before transplant, days post-transplant, WBCs, RBCs, platelets, neutrophils, stem cells, temperature, blood pressure, heart rate, weight, minutes spent walking outside, and on and on it goes. But, for the foreseeable future, much of what Jax will have to deal with involves all these numbers, and more. So please bear with us when we write these updates because most of her milestones and accomplishments will be based on the numbers they represent. Today she spent a few hours helping to heal the emotional side of her disease- support groups. These help in different ways, depending on which group hosts it, how many people are there, how good the facilitator is, and the participants input. For the most part, the ones so far have been a more positive than negative experience, so that is good. I realize that talking is very therapeutic, and a lot of what Jax needs to say, can’t be said to me, for various reasons. So I’m glad she is able to express her feeling in these sessions, and she is able to get feedback, suggestions, and support from other cancer survivors. I  hope she continues to use these support groups to learn how to take her life back. I’m so proud of her when she’s there, and she is so strong and so determined. She is awesome!!!!  New homework for all of you out there. After you read this update, I  want you to think of the ways you have helped Jax or our family since she was diagnosed. You have all done so much – cards, prayers, food, donations, messages on the web site, and a million other things. I want you to let yourself feel great about what you have done and acknowledge that you have made a wonderful difference in our lives. You need to tell yourself that you have become part of Jacquie’s recovery, and no matter how insignificant you feel your support has been, know that to us – it has been HUGE!  Give yourself a hug from all of us when you read this and remember to keep on BELIEVING.
 
April 8th 2008 -Day 47. Today’s clinic appointment went well with Dr. “Nick” and progress seems to be on the rise since Jacquie’s last time in. Her heart rate has declined to 101 so it appears the beta blocker medication is working. Again, she needed another GCSF shot to stimulate her white cell growth becuase her counts had dropped again, but not as much as last time. The good news is that her immune system is responding to the shot and so far, she is NOT experiencing any signs of Graft vs. Host Disease!! Her red cells, platelets, weight and spirits all remain constant. After a pretty uneventful morning, some shopping at the Gap for the new babies helped to fill up the day. Before getting ready for bed, Jax headed downstairs to walk out on the 6th floor terrace. Shes got new 2 pound weights and shes afraid to use them! Building her strength and energy back up will take quite some time but will help her both physically and mentally. Continue to say your prayers and continue to BELIEVE. Each day the sun rises and sets is another cancer free day for Jacquie and another day closer to home.
 
 
Hope Lodge
“HL” Enterence
6th Floor Terrace at night
     
Madison Square Garden
left view from the terrace
Empire State Building
right view from the terrace
 
Close Up of the Empire State Building

 

 

April 7th 2008 -After today is over, we have 54 more circles on our chain. Jax’s Uncle David came in to visit from Philly today. Although he doesn’t stay long, he does wonders for our spirits. Those of you who know Jax, know how she lights up a room when she enters, well, David does the same thing. His very presence is calming, but he is funny and energetic and finds a way to keep us laughing, just the way Jax does. The two of them together are a wonderful sight to see. We are already looking forward to his next visit. Tomorrow is another clinic day, a day for blood to be drawn to check counts and chemistries. We hope it will not be a long day, but we never know for sure. Jax is doing well with her taking on more responsibility and having more control over her care. She’s happy because I’m nagging her less (what me a nag?). Anyway, she’s out terrace walking right now. It was cold and rainy here again today, we’re still waiting for spring, which everyone keeps assuring us is “just around the corner.” Only problem is, is that these blocks are miles long so the corner is very far away. We had more smiles from Jax today, so that makes today another good day. Say a prayer for Jax, and then say a prayer for all the people who don’t have the friends and family that we have to support us and help us on our difficult journey. I can’t imagine how we would do this without all of you. Thank you for BELIEVING.
 
April 6th 2008 – Day 45, 55 down. This was a quiet weekend, spent mostly thinking of  what was and what will be. Jax and I did some re-evaluating on the care-giving issue and decided that it’s time for Jax to take some more control over her recovery. It’s hard for her to always have me reminding her of things she needs to be doing, or not doing. (I think my nagging is getting to her!) So we’ve made some changes that will hopefully give her a feeling of having more say in the way her day is set up and how things are done. I know how difficult it is for her to be constantly reminded that, for now, there are so many restrictions on her activities, her food, and even her hygiene. Everything has to be done with “post transplant” in mind. This is the new life she lives- everyday, 24/7. And still she moves forward, in spite of the occasional tears, anger, and feelings of helplessness. So, lets hope this new way of doing things makes each day a little easier to get through. Jax knows you are all behind her, it makes her stronger and gives her hope. It helps her to keep BELIEVING. Thank you for being there for her.
 
April 4th 2008 – Day 43. Nothing new today so it was a “good” day. Jax had a quick visit at Sloan, then we came back to HL for lunch. Jax slept for a little while this afternoon and will do some more walking on the terrace after dinner. Her spirits seem better today, therefore  mine are too! It’s so very hard to always try to say and do the right thing. As much time as I spend with her and even though I’m her mom, I am not in her shoes. I sometimes wish there was a little person sitting on my shoulder telling me what I need to do and say to help her. But then, when I come down to the computer room, and read all the messages filled with words of hope and encouragement, I realize that all of you who write to Jax are the “little person” that I need for strength and encouragement. So, once again I find myself trying to say thank you for all you do for all of us. Those of you who speak of our strength and courage should know that we get get it from you. Make today, and everyday count. Keep BELIEVING.
 
April 3rd 2008 – Day 42. Jax’s clinic visit went well today. Finally, some answers from the cardiologist. She said the Halter Monitor results from the tests last week showed that Jax’s heart rate is very fast, even when she’s sleeping at night. She feels that, although this is not unusual after a bomo transplant, this condition needs to be addressed and monitored so Jacquie’s heart doesn’t have to work so hard all the time. Jacquie will start taking a new medication tomorrow – she’ll take it once a day. This med is a “beta blocker”, which will slow down her heart rate to a more acceptable rate. She will be on this for about three months, at which time they will repeat the Echocardiogram and EKG to determine the effect of the drug, and whether or not she needs to continue to be on it. We’re glad to finally have a direction to go in regarding this problem, and, are sure that this will be resolved soon. Also today, Jax’s WBC showed an increase since she received the GCSF shot on Tues. We are praying that this increase remains and continues to rise and doesn’t drop like it has been doing. We won’t have the results from Tuesday’s blood work for about a week, so hopefully by then we’ll find out that the medication she was on was the reason for the continuing fluctuations in her white blood cell counts. Jax took the yoga class this afternoon, and stayed for the full hour. Now she’s exhausted and ready for bed. She is amazing! She is strong, determined and able to keep moving forward. When things happen to upset her, she cries, or gets angry or both, which is okay. Then, she gets past the moment and keeps right on going. I want so bad for her life to be “normal”, for her to be with her family and friends and doing the things a 22 year old young woman should be doing. I want Jax to have her life back. But she can’t right now. So, we just keep praying that her “new normal” life will be just as happy, as fulfilling and as wonderful as she deserves. Thank you Torey – for TJ and Jacquie. They are such wonderful people, my pride in them is endless. Somehow, we did something right to have two incredible children to love and share our life. To our family and friends who are parents – remember to say a special prayer of thanks for the gift you have been given. And remember always, to BELIEVE.
 

April 2nd 2008 – Day 41 and heading closer to day 50, the halfway point. A slow day here. Jax was pretty tired out from yesterday, so she just took it easy today. She did go out on the terrace for a walk, but it was really windy today and it made the air too cold to stay out for very long. Tomorrow is clinic, and I did let the cardiologist know we’d be in to talk with her, so……hopefully the news will be good. I think we both always feel a little down the day after Tor and TJ leave. It’s so good when they’re here and so lonely when they go home, It makes me sad for the time we were apart, but makes me really look forward to our future as a family. Remember, family and friends, make every day count, tomorrow can sometimes be not what you wanted it to be. BELIEVE for Jax, and for yourself and those that you love.

April 1st 2008 – Day 40 has finally arrived and with it, good news from Sloan Kettering.  Jax’s doctor said the bone marrow from last week “looks good”. Her marrow is producing a very good numbers of platelets and red blood cells, and her chromosomes look normal. She is however, a little concerned because Jax’s white blood count keeps dropping. After the GCSF shot, her cells show an increase for about 4-5 days, then her counts drop off and she needs another shot to pump them back up again. There are two possible reasons for this, her doctor told us. First, one of her many medications she is on is acting like an immunosurpressive drug and is preventing the production of white blood cells or she has developed an anti-neutrophil antigen which is causing the drop in her WBCs. Jax had extra blood drawn today, and the doctor discontinued one of her meds that might be the cause of the problem, so that she will be able to try to figure out the cause, and then a solution.  So, once again, we wait and see. Next appointment is on Thurs. The cardiologist report is still not back, if it’s not back by Thursday’s appointment, I think I may need to make a visit to the cardiac floor and find out what the delay is. Jax’s weight is up & the doc is very pleased with that, and her liver and kidney functions are all good, this is great news too!  The best part of the day was that this morning, Jax and I were surprised to find Torey and TJ in the 6th floor waiting room when we were getting ready to leave for her clinic appointment at Sloan. Our dear friends Missy and Gary Altieri gave Torey a ticket to surprise us and TJ was also able to get down on the same flight. It was a relief to see them both and it was such a comfort to have them here for the Doctor’s news at such a very importiant clinic appointment. We spent the whole day together and had a very nice dinner at Hope Lodge. After that, we all took a walk across the street before Torey and TJ has to leave to fly back. Continue to Believe, as each day that goes by Jacquie shows us that its working!