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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

Time Does Not Heal All Wounds

They say time heals all wounds . . . “they” didn’t ask me.

I have wanted to post an update to the website for a longtime now, but haven’t found myself ready and willing to come back to CaringBridge. I reassured myself that I would know when the time was right to write. In spite of having wonderful things happen with Annie’s Gold in September (G9) Project, I Back Jack, and our treasure Tommy turning two, I am back now to ask for prayers . . . for John. 

The wounds of John’s cancer diagnosis 23 years ago have never fully healed. Sadly, we’ve gotten used to bumps in the road that have included an intestinal resection in 2007 following Jack’s first relapse, the news of John’s end stage renal disease and needed kidney transplant, and John’s most recent intestinal resection just 4 months ago.  While John’s recovery has been slow, he has been recovering and we have been vigilant in tending to any issue that has needed attention.

When I felt that things had taken a turn last Monday (Feb16) and he needed to be seen by the experts, I brought him to the ER. Never in my wildest dreams did I expect things were this bad and we would be in a battle for his life. It is a miracle that John is still alive given all that was unsuspectingly transpiring in his body. We knew John needed a kidney transplant and we were working through that process, but the medical odyssey that began 12 days ago has nothing to do with the kidney and makes a transplant seem like a breeze.

What is happening and why: In order to save John’s life at age 23, he literally had the nuclear bomb of radiation dropped on his abdomen with intraoperative radiation. The bomb saved his life, but John is now a medical marvel and miracle as there are very few people who survive this long given the extremity of these so-called lifesaving treatments. His internal organs are quite literally disintegrating. How he was functioning at all remains a mystery. John has become so used to being fatigued and in pain that he has become super human tolerating more than anyone can possibly imagine.

John endured two surgeries this week. The second surgery Wednesday started early and was going well, but at 3 pm they hit a huge stumbling block and we were told that the likelihood of losing him was extraordinarily high. John’s intestines were quite literally falling apart in the surgeon’s hands from the radiation damage and a massive, undetected infection was eating away at everything, including John’s abdominal aorta. As tears poured from my eyes, panic and disbelief coursed through my veins, and questions of 'why' infected my every cell, I believe Jack’s beautiful face was in John’s sight but as John reached out to touch our treasured boy, Jack told his dad it wasn’t yet time and he needed to come back to Annie, Tommy, and me. Given the fragility of John’s body and the glory that he was able to see in Jack, I’m not sure any of us would have wanted to return, but return he did.

When one the surgeons walked in again 2.5 hours later and told me that things were looking better and potentially manageable, I nearly collapsed in gratitude knowing John remained the strongest, most determined person I have ever known. There are a few precarious days ahead of us and a long road ahead of medical management, but I pray we can keep John on the road as long as possible. I don’t blame him for perhaps not wanting to come back, but his family and friends are grateful beyond all measure. John’s surgeons and I are officially first name, swearing, hugging friends; they are wonderful. I truly believe we have a team that is talented, assertive, and compassionate and they now know that in us they have advocates that are aggressive, determined, and unafraid to ask, seek, question, and demand.

In the middle of all this, I was forced to have yet another horrible conversation with Annie . . . this time about her dad. We have spent the last couple nights cuddled together in my bed in the wee hours of the morning surrounded by all things Jack and dad. Today, Annie went off to school wearing John’s NYU sweatshirt hoping to feel her dad hugging her all day long. She has a maturity and wisdom that far exceed her years and fears that no child should have to continue face.

How much is one family supposed to endure at the hand ofthis horrible disease called cancer? There is no answer. But let me just clear up answers to a few other things right now:

1.    “You are so strong.” I am not strong. I have no desire to be strong. We have been put in extraordinary circumstances that no one should have to experience. I am surviving.

2.    “God doesn’t give you more than you can handle.” Wrong. I can’t handle any of this, but I haven’t been given a choice.

3.    “Everything happens for a reason.” If you haven’t walked this walk, don’t talk this talk.

4.    “I don’t know how you do it.” Neither do I. Trust me, I didn’t sign up for this and I haven’t been presented with alternatives. You do what you have to do.

And one more . . .

5.    “80% of children survive childhood cancer.” That is a 5-year statistic and is so very, very misleading. John was a 23-year-old adult when he was diagnosed and look at what ‘survival’ has meant for him. Imagine what survival may mean for kids.

Cancer leaves wounds in the body, mind, and spirit that will never heal. All we can do is hope to have a chance to bandage the wounds and fight the infection that will never completely go away.

"In three words I can sum up everything I've learned about life: it goes on."
 -- Robert Frost

Regardless of how difficult or the times I wasn’t sure I even wanted it to, life goes on. I’m grateful that 48 hours after being dealt another horrific blow, John’s life is going on and we still have a chance. Thank you for continuing to support our family and care about the well being of all of us. Your prayers and support continue to be humbly welcome and appreciated.

Sarah

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Comments

85 Comments

Bette Forberg
By Bette Forberg
Hi Sarah, I think of you so often, hoping John's health is improving each day. I also think of you, Annie and little Tommy, knowing that when a loved one hurts, all of you feel the pain as well. I also remember the day we spent together in Milwaukee before anyone was sick...how much fun we had trying to find people, laughing and complaining about things that now have such little significance. I have learned so much from you, Sarah, even though you never wanted to be our teacher. May God bless each of you in the days to come. You are not alone as you "fix Daddy."
Connie Flory
By Connie Flory
Sarah, I'm Connie from Ohio, and followed many children on CB, but somehow only "stumbled" across Jack's site today! My heart goes out to you and your family. I want you to know that I will be praying every day for John, and for Easter, we will be placing flowers at our church in memory of Jack. I just feel so deeply for you all, and hope and pray for the best for John.
Josette Herriges O'Neil
By Josette
Sarah, You and your family are in my thoughts. Peace and love to you.
Ginger Krawiec
By
Thinking of you all and hoping John is holding his own. I am so sorry things are so difficult; life is not very fair, is it?
Michelle Varhol
By Michelle Varhol
Kim May
By Kim May
Oh Sarah, I am so sad for all of you. Who knew it would come to this. His cancer was cured right!? After everything you went through w/Jack( god bless his little soul), to now to be going through this with John seems so unfair and wrong. I think of you all often and wish there was something I could say/do to make it better. I will keep all of you in my thought and prayers. I am always available if wanted/ needed and would love to be there for you, love you all.
Kim
Toni Flesch
By Toni Flesch and family — last edited
As we read this recent post, our hearts ached and tears streamed down our faces onto the keyboard. Cancer and all its after effects suck! This is so wrong, unfair, frustrating, horrible,… I could go on and on but I imagine you could throw in plenty of your own words. I am so very sorry for what all of you have to endure. I wish there was some eloquent words I could come up with that would take away the pain, fear and sadness as well as make John healthy once more. But one thing I can do is try to convey how much we are praying for John and all of you, that we are always here for all of you in any way you need. You are thought of so often. We hope you feel the love, support, and endless prayers from all your family and friends. Please continue to keep us updated.
Cathy Peters
By Cathy Peters
Oh Sarah, I'm so sorry to hear this. I'm thinking of you and your family.
Linda Kemper
By Linda Kemper
Thoughts and prayers for John and his family! God Bless and we lift you up each and every day!!
emily welk
By emily welk
I'm so sorry to read what's been going on with John, we will be praying for him...