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.
Aug 27, 2013 8:01am
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 resonate through my heart and soul.It’s been 525,600 minutes since I kissed my beloved Jack goodbye; 525,600 minutes since I heard his voice, breathed in the smell of his sweet head, touched the soft skin of his face, and held the hand of my beautiful boy. Many of these minutes have been spent wondering how I will go on and live to keep breathing, but I have . . . our family has . . . and we hope we are doing it in a way that honors our Jack and his memory, his legacy, and his happiness.
I haven’t been able to come to CaringBridge like I used to in an effort to pour out the emotions felt in my heart because it has simply been too painful. I have opted for the simpler means of Facebook or other such options to provide updates as coming here is yet another reminder of our loss and of the lost hope that I held tight to and wrote about for nearly seven years. But as we hit this milestone, a milestone no parent should have to hit, I knew I must write.
These 525,600 minutes have been some of the hardest I could have ever imagined. I apologize to John often for being a grieving, post-partum, nursing mom - it’s not always a good color on me. And just about the time I hoped we could begin to discover our ‘new normal,’ my own mom was diagnosed with invasive breast cancer. How is it that one little family must endure yet another blow from the monster known as cancer. Let me tell you, ifthis is ‘God’s plan’ at work, it isn’t working for me.
I think there still remains a small part of me that believes if we can prove ourselves worthy, prove we can survive, and prove we have made a difference, Jack will return to us. Though I know this is impossible, I try to carry on with the knowledge that he never really left. Though his physical presence is no longer with us, his spirit is ever near. There are signs from Jack both large and small that make me catch my breath. Happily, I am not the only one who has witnessed the signs as Annie has had her own moments that make both her and me so very sentimental. Even John, with his stoic skepticism, can’t deny the signs and signals. I believe Jack’s light and love are always around us, but it certainly doesn’t help my aching arms stop wanting to holdhim just one more time.
One of my greatest fears is that people will now assume because we have made it through this year and all the ‘firsts’ without Jack, we will now be ‘better.’ Let me tell you, this is not a broken bone we are healing from and ‘better’ will never be a word to describe how we feel; this wound will never heal. Rather, we will always miss Jack and will never stop shedding tears over this tremendous loss, but we hope, in time, the wound will not seem quite so deep.
We escaped the certain sadness of being at home with a little trip north to Door County. John, Annie and I all felt we needed to be away and be together, but we didn’t want it to be in a place that held too many memories. We only came to the area once for a brief overnight with the kids many moons ago when we believed hope would see us through. And while we still hold tight to hope of a different sort, we know we must also hold tight to those who know and feel our pain. We spent our evening dining with the mom of Jack’s dear friend Bo, an amazing boy we love but who also found his ultimate cure in Heaven just one month after Jack. We cried, we talked, we marveled at baby Tommy, and we missed our boys. The good news is that we know Bo and Jack are together and we know they were happy we were together as well.
One year ago I held my sweet Jack wishing he had the chance to know his little brother; today, I hold my sweet Tommy wishing he had the chance to know his big brother. 525,600 minutes. How do you measure a year? Intears and laughter, sleepless nights of missing and sleepless nights of holding, in lost hugs and gained kisses, in memories and moments, in seasons of despair and seasons of love.
I can’t imagine living another minute without Jack, let alone the years of 525,600 minutes ahead. But live we will and make a difference we must not for Jack but because of Jack and with hope that other families will not have know one minute of a loss like ours. The seasons of our love will bring spring blossoms and dark winters, but we will look for the eternal sunshine of our Jack to light our way.
I love you Jack . .. in every minute of today, tomorrow, and always. Mommy, daddy, Annie and Tommy will always back Jack.
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