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My Story

Back Jack . . .
do it again.

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.


Sarah Bartosz posted a new journal entry, "525,600 Minutes".

August 27, 2012 – August 27, 2013:  525,600 Minutes.While I have to admit that Rent is not my favorite musical, the lyrics from one of the most well known songs ... Read more

Maggie Aquaro signed Jack's Guestbook.

Dear Sarah,I think of you so very often and am embarrassed at my slowness- or even reluctance to tell you so.  Even as a mom who can bear witness to grief's magnitude I ... Read more

Sue from MN signed Jack's Guestbook.

Thinking of your family during this holiday season. May you find peace and joyamidst your heartbreak.  Read more

Margaret Vela signed Jack's Guestbook.

Thinking of you during this season of Thanksgiving.  Praying for sweet memories of Jack to ease your aching hearts.  Happy Thanksgiving.  Hugs from Houston, TX. Read more

Nikki Spencer signed Jack's Guestbook.

Thinking of you guys and your wonderful son. You guys should check out #ibackjack on instagram. Its gotten a lot of attention the past few weeks:) Read more

Melanie Addis signed Jack's Guestbook.

I was wondering how your daughter is doing.  My son is struggling and feels so alone.  I was trying to find a support group strictly for children, but not at the ... Read more

Francesca Demers signed Jack's Guestbook.

My loves,Somehow when this came in last week I had missed the notification. When I realized that it was here I knew I must wait for a quiet, perfect moment to read it and ... Read more

Kim May signed Jack's Guestbook.

Will always remember Jack and feel for all of you.  I have thought about you all so much over the last year, especially the last 2 weeks.  My heart ... Read more

diane mack signed Jack's Guestbook.

hugs, love, and prayers.......... jack is ALWAYS a part of you, of your lives..........but i can never know your pain. just know we will always be here for and with you. Read more

Toni Flesch signed Jack's Guestbook.

We are all thinking of you and your beautiful Jack today. I am sure you have shed enough tears this year to rival Niagara Falls, and of course there will be many more as ... Read more

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