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Jack’s Story

Back Jack . . .
do it again.

www.ibackjack.org
After a week of "flu-like" symptoms, Jack ended up in the Children's Hospital of Wisconsin ER on Friday, September 23, 2005 . . . the day our nightmare began. A CT scan revealed a large, softball size tumor in his abdomen. The tumor was wrapped around his right kidney and looked to have started in the adrenal gland. The likely diagnosis was neuorblastoma, an aggressive childhood cancer.

John immediately left the ER room to call his best friend Dr. Andy Lassman, a neuro-oncologist at Memorial Sloan-Kettering in NY. Before the diagnosis was even confirmed, we began gathering experts. The next week was spent with tests, scans, a biopsy, and bone marrow tests, all of which confirmed our worst fear -- Stage IV Neuroblastoma. In addition to the tumor, Jack also had bone marrow involvement and a bit of bone involvement in his legs and spine. For those all too familiar with the details of neuroblastoma, it was determined that the N-MYC was non-amplified, the DNA ploidy 1.12, and the Shimada histology unfavorable.

Exactly one week after diagnosis, Jack began chemotherapy at Children's Hospital of Wisconsin. Though we had not yet made a determination on the exact course of treatment (i.e. stem cell transplant and/or immunotherapy) we knew that both CHW and MSK followed the same chemotherapy treatment for high-risk neuroblastoma. Further research led us to determine that we would follow the MSK treatment protocol and utilize the expertise of the four doctors dedicated to curing this disease - Dr. Cheung, Dr. Kushner, Dr. Kramer, and Dr. Modak.

On December 19, 2005, following three cycles of chemotherapy, we took Jack to NY for tumor resection with Dr. Michael LaQuaglia. The surgery lasted approximately 5 hours and was successful in removing the entire tumor and involved lymph nodes. It was described to us as the "gold standard" in neuroblastoma surgery. We believe we got the gold standard results by putting Jack in the hands of the gold standard surgeon. He recovered from the major surgery quickly and began his 4th cycle of chemo in NY on December 23. Jack's 5th cycle of chemo was completed at home in WI. It was at this point that we had to pull Jack from the treatment schedule at Children's Hospital to follow the specific protocol at MSK.

We will be forever grateful to CHW for quickly and accurately diagnosing Jack and beginning his treatment. We are also extremely grateful to MSK for allowing us the opportunity to utilize their expertise with this disease. As of Monday, February 6, 2006 following five cycles of chemotherapy and surgery, Jack had a complete response to treatment and shows no evidence of disease (NED). He began 3F8 antibody treatment at MSK on February 13. On March 1, Jack began 7 days of radiation treatment to the primary tumor site in his abdomen. These treatments lasted 10 minutes twice a day. He required no anesthesia for the procedure and breezed right through with very few complaints and side effects. Following radiation, he began his second course of immunotherapy treatment (3F8) at MSK, but developed HAMA afterward making Jack ineligible for further treatment at that time. We continue monitoring his HAMA blood level until we are able to get a third cycle of treatment in as the goal was always to get at least four cylces. We have faith and hope that Jack's superhero powers will continue to see him through and not let this dreaded disease return. We are confident that the experts in NY at Memorial Sloan-Kettering, who see more cases of neuroblastoma than any other institution in the world, willl assist us in curing our precious son. We hold MSK in the highest regard as they cured Jack's daddy of his liposarcoma and testicular cancer more than ten years ago.

May 4, 2007: A routine visit to MSK for tests/scans revealed a recurrence of the neuroblastoma in Jack's upper left femur and a very small spot on the top of his skull. This came as a complete SHOCK as Jack was displaying absolutely no signs and was healthier than ever. We will follow the MSK plan to deliver two high-dose cycles of chemo and radiation to the spots to shock Jack's system back into remission. From there, we will utilize antibody, vaccine, and any other therapies possible to FIND A CURE. Jack's treatment following relapse consisted of the following: 2 cycles of cytox, topotecan, vincritine 1 cycle of carbo, irinotecan, temodar 7 days radiation to skull and femur *Declared NED in late July 2007* 2 cycles 3F8; HAMA positive Rituxan and low-dose cytox to lower HAMA (experimental) Low-dose irinotecan, temodar - 10 cycles over 8 months HAMA negative (June 2008) 3F8 beginning again July 2008 December 2008.

December 16, 2008 - Routine scans catch a tiny relapse in Jack's jaw. Two cycles of CTV and radiation to the jaw.  Three additional cycle of standard dose cytox/topotecan; declared NED in Aril 2009.  Four cycles of high-dose 3F8.

Latest Journal Update

Two Years

“Grief is like the ocean; it comes on waves ebbing andflowing. Sometimes the water is calm, and sometimes is it overwhelming. All we can do is learn to swim.”

Each and every one of us ride the waves of every day life. We ride the waves like acrobats balancing every aspect of our day-to-day activities and obligations. What I have learned in the last two years of riding the wave of grief is that there is no ride, it’s more like a doggie-paddle fight against the current just trying to keep your head above water. As I write now on the eve of Jack’s passing I can remember every moment of those last days, minutes, and moments. I wish I could say that August 27 is a happy day as it is the day Jack was set free for a bigger and better purpose; unfortunately, for me, it is the day I had to kiss my sweet boy goodbye and wonder how I was ever going to survive.

“Child loss is not an event, it is an indescribable journey of survival.” 

Two years. Two years of missing, of wishing, of wanting, of begging, of crying, of loving. Two years. I have experienced some of the most thoughtful, loving expressions of friendship and kindness over these two years. I have also heard some of the most insensitive, cruel comments during this same span of time. I know, I know, it’s hard to know what to say and I’m sure no one intends to be cruel, but let me just clear this up, to the person that said (on Mother’s Day no less) “You’re all still sad? Well, it’s been over 18 months now, right? And besides, you have Tommy.” Why yes, I am still sad, we are all still sad and we always will be. Tommy is a joy and a beacon of life, love, and hope, but one child is not replaceable with another. Such a sentiment is cruel to both Jack and Tommy.

It is extraordinarily difficult to come to CaringBridge, but at the same time, I am not ready to write that ‘final’ poignant entry telling the world that Jack’s story has ended . . . because as long as I am living, his story will never end.  But to get online and write about life without Jack is just far too difficult.

“A child’s death forever changes a family and those who love them. The experience of grief is lifelong – it does not go away after a certain amount of time.”

Jack is with us, though, that I know. From big signs to little signs, Jack is here. It sure doesn’t make it any easier not to hug himor kiss him or hold his hand, but he is here and he is present in everything we do. While we do our best to embrace orange joy on the exterior, our hearts are full of sorrow for could have been, for what might have been, for what should have been. We have a wound that will never heal. Though a scab will form and, perhaps, eventually grow thick enough not to bleed daily, the scab will always remain and even the slightest bump will cause the bleeding to begin all over again. Though our wound may not be visible on the outside, let me assure you it is there. 

“No matter what anybody says about grief and about time healing all wounds, the truth is, there are certain sorrows that never fadeaway until the heart stops beating and the last breath is taken.”

What plagues me the most is the balancing of grief and happiness. I know Jack wants us to be happy, but it is psychologically taxing to find the balance. When I’m sad, I feel guilty for not embracing the joy that Annie and Tommy bring me daily; when I’m happy, I feel guilty that I am not honoring the deep sadness I have missing Jack. It’s tough and it’s tricky. There’s the brutal reality with grief. How will I ever be able to experience the best day of my life without Jack? But how can a day in the past be the best day ever when it was without Tommy? Jack told us the answer years ago when he said, “Every day can be the best day.” We will just have to make every day the best it can be and treasure the memories of days gone by.

 “A Mother is not defined by the number of children you can see, but by the love she holds in her heart.”

Nothing brings me more joy than watching Annie and Tommy smile, laugh, and live life to the fullest. In some respects I think we are all a little jealous of Tommy who doesn’t know or understand the depths of this grief. On the other hand, as he ages, I know he will be jealous that he didn’t know Jack the way we did and will only be able to live with Jack through us. Rest assured, he will know everything there is to know, but I can’t help but think that Jack isn’t already whispering in his ear. Tommy has a distinct fondness for wearing a fedora from the time he wakes up until the time he goes to bed. We spent Summer 2011 traveling back and forth to Houston for a trial and when we weren’t in the hospital, we were searching for the perfect fedora Jack was determined to have. He would have loved the hats Tommy wears and perhaps, at long last, these are the perfect fedoras. And who can argue with the fact that one of Tommy’s favorite foods and favorite words is, you guessed it . . . cheese.

Annie adores Tommy in a way few siblings can understand. While he might drive her crazy with his constant busy ways, his cries break her heart and his squeals of delight calling her name and running to her make the hurt just a little easier to bear. On the cusp of her teen years, Annie is an athlete and an advocate. Her Gold in September (G9) Project is moving forward faster than we can keep up with, but that’s a good problem to have. Her idea is so simple: unite everyone to help kids. Annie gets very frustrated when people comment (and they do) about her creating G9 just to garner added attention. “Really?” she says, “Do people really think I want to know about any of this? I’d give anything to be an average, clueless kid fighting with my twin brother like normal kids do.” And there you have it a not-so-average, not-so-clueless kid with a heart of gold. She does, however, give me the stereotypical tween eye-rolls and irritated glances so at least that allows me a sense of normal. 

Annie tries so very hard to be tough on the outside but spent the last school year walking in the door more times than I can count dissolving on the floor in tears wondering why people can be so mean and insensitive. I pray this year will be better, though Annie’s grief seems to only escalate in school as she longs to have Jack by her side. We attended back to school night tonight, which is no easy task for any of us. As I look at the bright, eager faces and notice how tall kids have gotten, I can’t help but wonder . . . how tall would Jack be? what would he be most looking forward to? what kind of a backpack would he want? what kind of shoes would he be excited to wear? what would be his favorite subject? And the list goes on.

“I thought I would have to teach my child about the world. It turns out I have to teach the world about my child.”

And then there is John, my strong, devoted husband who survived his own battle with cancer only to watch his child die. When John faced cancer 20+ years ago, he was told there would be health consequences down the road. Well, we’ve come down this bumpy road and hit another pothole. John’s only remaining kidney has failed as a result of the treatment that saved his life. He needs a transplant and we are working through the process of determining a donor. It’s long story and this post is already too long, but I ask you to consider this, if these are the long-term effects of being a cancer survivor in your 20s, imagine the harsh treatments children have to endure and the long-term effects they will face. It’s unacceptable. Please continue to keep our family in your prayers so that we can get John back on his feet as quickly as possible. 

“Cancer changes us, there’s no doubt about that. But it’s up to us to decide what that change will mean in our lives, and who we will become as a result.”

There are many people who tell me that I should let some of the work I do non-stop for childhood cancer go and, I will tell you, there are many moments when I agree. At the end of the day, however, what I know is that perhaps it was someone just like me who gave up after losing a child in an effort to remove themselves from the pain and the ongoing agony of the topic. Who can blame them? But perhaps if a few more people would have stood up and done something, a few more companies jumped on the gold bandwagon as they have with other causes and recognized the value of investing in kids, a few more voices spoke loud enough to be heard, maybe we would still have Jack. The vaccine trial that is keeping kids healthy right now was just 6-12 months too late in arriving. Would it have saved Jack? No one knows; what I do know is that we weren’t given a chance to find out. If we give up, will there be another family feeling the weight of this horrific grief? 

On August 27, 2013 I gave you a number: 825,600, the number of minutes in the year that had lapsed since losing Jack. This year I will leave you with a different number: 15,780, the estimated number of children that will be diagnosed with cancer in 2014. I must do something. We all must do something to make it better. Jack would want us to. 

“We will never be the same as we were before this loss, but are ever so much better for having had something so great to lose.”

To my beautiful Jack . . . I miss you with every fiber of my being. I love you beyond measure now and forever.

Always backing Jack,

Sarah

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Comments

36 Comments

Dawn Renee Morgan
By Dawn Renee Morgan
Dear Sarah, I fell in love with Jack and your family through caringbridge and the work you do for childhood cancer. You and your family strive to help others in hopes to prevent the incredible pain you all suffer with the loss of Jack. Obviously the person that said what they said to you is not a parent. Jack was and is an amazing bright orange gift and Jack could never be replaced! Nor, should you be expected to not have an emptiness in your heart forever without him. I'm very sorry. Your son, your love, your sweet boy will never be forgotten or not missed every single day. I don't know how a parent goes on, much less put one foot in front of the other to help others to find a cure. I pray for your family, so pray for your husband. I still grieve for sweet Jack and I never met him. His attitude was incredible and he touched me deeply with his cancer message/commercial and his beautiful heart. Your pain will forever cut deep, your love for Jack will be endless. I pray for you, my heart goes out to you. Forever Jack's Mom, don't let the ignorant even take one moment of your energy. You have much to do for Jack, Annie, Tommy, John, and so many kids futures! Thank you for your beautiful honesty and please keep telling Jack's story, he is such a special boy that we want to continue to honor!
Suzi Tortora
By Suzi Tortora — last edited
Dear Sarah, Your poignant entry has moved me deeply. Jack, and each of you have stayed in my thoughts and heart. I felt such warmth reading about Annie and Tommy. I was not aware of John's condition and will now include him in my prayers as well. I deeply appreciate your honesty and continuing devotion to supporting childhood cancer awareness. With much love, Suzi
Sue Ristow
By Sue Ristow
Sarah, It took me a few weeks to write a comment because so much of what you have said about grieving your child hit home for me. Although I could never express it as well as you have the loss of a child never leaves you. The grief does ebb and flow and the guilt of not feeling the grief every day can make you crazy. I lost my little girl 36 years ago to a cancerous brain tumor. I also was pregnant with my 2nd child at the time and always wondered what if and how would she have grown up and what a beautiful bride she would have made. She never had a chance to experience life and then she was gone. I have accepted the loss and have somehow come to feel a peace that she is with my mom and dad and out of a pain that she suffered from the day she was born.

That hasn't made the grief and loss of her any easier. And yes after 36 years I still have my days. And people have told me let it go its been a long time and shes in a better place. I know this is all true but it doesn't really matter because it was my baby girl that I had to say goodbye to that Thursday afternoon in June. It's how you feel and how you deal no one else can tell you how to feel. You and your family need to handle and deal with this in your time frame no one else's.

Your are right people don't mean to be cruel they just don't know what to say when you loose a child. I remember the women that came up to me at the cemetery and said "you know she could have fallen off the toilet and died to at least this was a disease and not your fault." Yes those comments stay with you forever but I don't think they really were meant to be cruel.

And those that tell you that you stop your fight against childhood cancer I say please please don't. If somehow you can save one other mother from this grief and loss then everything you have don is more then worth it and I think from what I have read about Jack is that he would be proud that you helped another little boy and his family.

Sorry this is so long, but it all just flowed out of me and I wanted to share.
Stephanie Kemp
By Stephanie Kemp
Sending love and prayers to your entire family.
Matt Lunow
By Matt Lunow
Beautifully written. I am saying a prayer for you and your family. The world is a better place because of you and Jack.
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Anita Turner
By Anita Turner
I cannot imagine the depth of your pain. Sending positive thoughts for continued strength to face each day without your beautiful son.
Veronica Reagan
By Veronica Reagan
Sarah, what a beautiful post for your beautiful boy. You honour his memory so wonderfully. Jack will never be forgotten. Wishing you and your family all the best wishes.
Pat Corrao
By Pat Corrao
Sarah your words are beautiful and so personally touching to me. I will always remember I heard of Jack's passing as we were learning of our granddaughter's Cora diagnosis of neuroblastoma. She is still fighting and as you know relapsed. You have been an inspiration to me. I am truly sorry to hear about John's health issues. This September is going to shine incredibly bright!
Linda Kemper
By Linda Kemper
Thoughts and prayers for your family!!! I We will never forget our times in NY with him!! We pray for all to go well with John,s transplant!! God Bless!!
Kim Schellinger
By Kim Schellinger
Sarah,
I saw the 24 hour swim the Arrowhead girls team participated in yesterday what a tribute to Jack that he has inspired young people as well as those of all ages. I know this is an especially difficult time for you, John and Annie. You are in my thoughts and John... another battle for your family. I will be praying for him and continued strength for all of you. Never stop believing!