Short version: Jack’s Story
“Jack was diagnosed with DIPG(Diffuse Intrinsic Pontine Glioma) on Oct. 28th, 2011 from the results from an MRI scan. He was admitted to the hospital Oct. 24th after having increasing difficulty speaking and enunciating, favoring his right side while walking, and the sudden fear of looking up while in a shopping cart at either a high ceiling or the sky. His growing frustration with his condition has been heartbreaking. Jack loves letters, numbers, shapes, and the playground. He knew his ABC’s by the age of 2, reads some words, and counts to the hundreds. Give Jack a toy or group of toys with letters, numbers, or shapes and he will be very happy! He also loves to play chase and tag. He wants to play the piano and violin. Jack is very particular and very neat…he is very sweet, and loving; “I’m ok Mommy,” he says…
We remain forever hopeful that the unseen dimension where the cause originates may be elucidated, that healing and recovery may become accessible to more and more patients through whatever our experience might in some way provide, and however it unfolds. We thank our friends, family, and new friends in this journey for your loving kindness, spirit of comaraderie, and undying love for Jack-Jack.”
(This comes from Jack’s Caring Bridge Website, www.caringbridge.com/visit/JackDemeter)
Jack was born into the Light on July 30th, 2012 with his last breaths. He survived exactly 9 months past his date of diagnosis. We have found no long-term survivors of DIPG; there is less than 1% chance of survival with current clinical standards.
We were very fortunate to have such an amazing doctor team at Children’s Hospital Los Angeles. Because of Kenneth Wong, M.D. and his staff at radiation oncology, we were blessed with nine more months with my son. Thanks to the kindness and expertise of Girish Dhall, M.D. and Dr. Wafik Zaky M.D., Jack’s neuro-oncologists, we had the wisest possible counsel concerning available chemotherapies, and we avoided losing precious time to pursuing other therapies that have not been effective to date. Our goal was quality of life, and however aware we were that death was most probable, hope forever remained alive in our hearts.
Because of the generosity of friends, and strangers, in our local community, we were able to spend quality time with Jack, and were able to affect his quality of life in ways we wouldn’t have been able to afford without this help. One friend started what we came to call “Jack’s Fund”, setting out donation cans around the local community. Another friend started a Jack Day each Wednesday at Chili’s in Canyon Country. A charity adopted us Christmas 2011 so that Jack’s Christmas would be magical. Another family sent us to Disneyland. Another friend helped us take a weekend vacation together as a family. Dr. Wicher, ND, treated Jack for free, and so did a highly skilled osteopath, and D.A.O.M. We were truly humbled to the beauty and goodness of the people all around us, continuing to this day in our commitment to raising awareness for the need for research for DIPG and other pediatric brain tumors, the leading cause of cancer-related death in children; that some day in the future, the experience for families with a DIPG diagnosis for their child will be one of hope rather than prolonged grief.
A longer version of Jack’s Story can be found by following this link, or reading on below:
Jack, James-William Gregory Demeter, was born a healthy baby boy, 7 lbs-7oz, 22”, a Saturday Night little man at 11:36pm, Aug. 30, 2008. Our Sophie-Marie was nicknamed “Boo” for the little girl in Monster’s Inc, and Jack-Jack was for the little guy from The Incredibles. Needless to say, we were Pixar fans. Actually, Jack was named for my grandfather Marsh, James Randall Marsh, known as Jack by his friends. I never got to meet him; he died a year before I was born. But I will always remember the emotion that welled-up in my father whenever he would speak of his father, of what a beautiful person he was. I’ve felt that way about my father since I was a child, so it just made sense.
While adjusting to the new routine of nursing/napping into the wee hours, one evening, after a long day for my husband of brush clearing and then driving out and back to the desert as a favor to a friend, he woke me around 2am to the sound of helicopters and a crazy tension in the air. I looked out the window to the southeast to see an ominous orange glow beyond the ridge. Between us and that fire, there was nothing but dead brush and ticks just waiting to be burned. I knew.
Barry and I were older than most couples that get together to start a family; neither of us had children or had been married, but we each had a lifetime’s accumulation of riches in “cool stuff”. So, when Sophie-Marie came along in 2006, our lives were changed forever for the good, and then 2 ½ years later with Jack, even better. However, we were renters and could not get any company to insure our property, due to the fire hazard zones. We were right up against the Angeles Forest in a canyon that had burned 30 years prior. Barry was in construction and had tools for several construction trades, and mechanics tools from when he had worked as a mechanic. We’d also just put together an art studio, since we both had art in our backgrounds and desired to explore that in our current lives, and with our children. We had also just created a wonderful playroom with all Sophie’s favorite music and toys, with preparations for Jack. We’d acquired horse equipment and had 2 horses. It was all vaporized that early morning, Oct. 12 2008. Jack was 6 weeks old.
We spent 10 days at my father’s house and then 5 weeks in a friend’s guest studio, which was an adventure all on its own; we remain grateful to our friend Eloise for letting us stay with her and her 5 horses. During that time of uncertainty, tiny Jack would greet me each morning with an enormous smile. There was something special about this little guy. While my sweet Sophie struggled with night terrors and understandable fears and emotions for a 2 ½ year old who had lost the only home she ever knew, Jack the infant appeared very calm and serene, giving that feeling that ‘everything is really all right’. He continued to be that sweet, happy baby with a huge smile. My concern for him grew over the time he was about 20 months to 2 ½; there was nothing obviously wrong but little things that my gut told me were somehow significant. For example, when he was a baby, I noticed(when at my friend Patricia’s house) that my little baby didn’t seem as vivaciously ‘present’ in his energy as her little baby boy, approximately the same age. We attributed it to personality. Patricia always appeared to be in love with him and very protective of him. He was very present—I just don’t know how to describe very well these nuances of vitality, of manifested energy. It’s like something in him was a little sluggish, but I didn’t know what.
Blessed by the charity of friends, strangers, and family, we managed to survive through finding another place to live, though it was 25 miles away and a much different type of community. It was beautiful and rural, like we wanted, but I wouldn’t call it ideal for raising young children. 5 acre or more plots without a playground or any kind of cohesive community structure, at least not for a newcomer, there was no “Welcome Wagon”, I should say. We moved into our current home, “Jack’s house”, in December of 2008. As Jack got bigger he started crawling a little late, around 10 months, and then started walking at 13 months. This isn’t that unusual, mind you, but his sister developed a few months earlier. However, she didn’t do much crawling until after she started walking, so it was hard to judge at that point. When Jack was 18 months old, I switched pediatricians because the office was not what we wanted—unresponsive, unpleasant technicians, too many patients for this doctor. Jack never developed much of an appetite beyond nursing; I was concerned about his appetite and his weight and the new doctor discovered his iron was low. So we got that to improve through creativity with eggs. He was also slight in his physique, seemingly, compared to his peers. This could be attributed to personality or individual characteristics rather than something “being wrong” with him, but it didn’t sit well with me. Other than those things, he was a happy, smart little boy who loved drawing, painting, and books. Jack could sit with books for long periods of time. And Jack loved the playground, and the beach whenever we got to go.
Around the time of his third birthday, I noticed his speech was, seemingly, not as precisely executed as he was capable of doing. I became very worried about how ‘careful’ he was with himself physically. He had a few headaches and mysterious fevers with no other symptoms. The doctor’s office would say to not bring him in unless the fever had been present for more than 2 days, and it always cleared up. I took him back to the dentist to be x-rayed to make sure no decay had turned septic or was causing any kind of infection. He was generally irritable in the car. He suddenly became upset when looking up from a shopping cart—would start crying…and then, the last straw, he began to limp. When this did not improve and got worse, involving his right arm as well, we took him to the doctor who sent us to Children’s Hospital Los Angeles. That was October 24, 2011, and Jack was diagnosed from an MRI scan Friday, October 28, 2011 with Diffuse Intrinsic Pontine Glioma, or DIPG.
In the hospital he amazed the staff with his love of letters, numbers, and plane geometry. “Parallelogram” and “trapezoid” were part of the daily conversations and drawings. He could count well into the hundreds and knew his alphabet in English, French, and was learning it in other languages on u-tube. However, this didn’t last; I couldn’t believe how quickly his personality was disappearing. He was angry and uncomfortable, and only managed to enjoy playing occasionally during the first few days we were in the hospital.
Immediately Jack was put on Decadron, a steroid medication, and his agitation increased. He was to start radiation Nov. 3, and on Nov. 1 he would get his “port” or portacatheter surgically inserted. Those few days were hard. At the time I did not realize that the tumor was growing fast and he was not long from death without the radiation. I feared my Jack would never walk normally again. Then, after decadron, he lost interest in going to the playground. There was a playground at the hospital, and I would take him and help him get around; what struck me was the fear I saw in other children’s eyes(probably siblings of children in the hospital) at seeing his jerky gait and difficulty getting around. But Jack was determined to enjoy the playground, though dismayed that his body wouldn’t do what he wanted it to do, until a couple days later, and then he didn’t want to go at all. I began fearing I’d never see my son’s happy personality again.
The first couple weeks of “RT”, radiation therapy, were difficult. I had to keep giving him decadron orally, wake him up without nursing, for he had to have an empty stomach to be anaesthetized for the RT treatments. He would just repeat “No, No!” all the way down to LA. It was 35 miles, but in morning Los Angeles traffic that could mean 1-2 hours. I had a running joke with myself that if we could survive 6 weeks of traffic like this, Jack’s probability of survival would increase at least 20 percent…yet it was just that, a “plaisanterie”—my mind goes to the French word—for it was just to please me, distract myself from the dark certainty in my gut that I was going to lose my son. I just didn’t know when.
Miraculously, Jack began to say, “YES” to the RT technicians and smile for them on the approach to the RT room. It was a smile that took substantial effort, and he didn’t want to let go of it once he got it on. He finished RT with flying colors, a certificate, to be followed by a trip to Disneyland out of our neighbor’s charity. Then there was a month’s wait to find out how effective the therapy had been from another MRI scan. He had begun to walk again on his own, and try to run!—but he would fall, because of the quick weight gain from the steroids and muscle weakness. I was so happy that our doctor tapered him off the steroids during the RT. He was unhappy while taking that medication, and didn’t resemble his normal self. I hoped he’d start looking and feeling like his old self again; gradually, he did over the next month. On January 11, 2012, his MRI scan showed a 50% reduction of the tumor. The doctors smiled, “we have some time”, they said.
We had worked very hard at supplementation with brain antioxidants at night and naturopathic/holistic medicine to help his body tolerate the radiation. However, we did not want in any way to interfere with the radiation’s affecting the tumor. We worked closely with our doctors for this purpose. However, Jack was very difficult to treat with therapies that involved swallowing things or eating things. Many of the chemotherapy protocols involve pills which he could not have taken. I couldn’t even get him to drink a decent amount of water, and getting natural treatments to a therapeutic level was a constant challenge that we were not able to effectively meet.
We were not opposed to considering clinical trials or chemotherapy, it’s just that at the time there wasn’t anything promising to consider—we relied upon our doctors to inform us and I wish I had heard about Dr. Souweidane’s clinical trial in time. In this trial the tumor is physically accessed and medicine directly deposited, with the hope of extending life. (see the page on Research) I was two weeks late in finding it. Patients couldn’t be beyond 12 weeks post RT. We considered a clinic in Germany but were without the means to afford it, involving hyperthermia and Rife technology combined. They had never treated anyone Jack’s age. We looked at as much as we could under the sun, and practiced Rife at home without any real direction or tutorial, but it seemed to have a positive effect on his vitality. We did ozone therapy in the ears, not the most effective method but the only practical one for a 3 year old. Jack would watch u-tube while he had his ozone treatments. We stayed as close as we could to ketogenic diet as we could. I made bone-broth soups with vegetables and made cookies from nut meats and stevia, and used our juicer as much as possible. Tough to administer to a kid without much appetite!
I must mention that Jennifer Wicher, N.D., D.O. Arsen Nalbandyan and D.A.O.M. Aram Nalbandyan donated their services to assist Jack. Dr. Wicher provided infusions and dietary/supplemental direction, and the Osteopath and Doctor of Oriental Medicine donated their services. I remain grateful for their help. At the end, Dr. Kochan in Sherman Oaks generously helped us at the very last minute, never giving up hope.
Friends immediately rallied around us for support. This was the inspiration for Jack’s Angels, as well as our Foundation’s name. The urgency and strong need to create goodness out of adversity came from that dark certainty of impending doom, no matter how much hope, prayer, self-analysis, positive thinking, came into our sphere, and I thank God for all of those things. The effect of the stressful feelings on the body can be likened to a car, imagining my little standard shift Honda pushed to sixty miles an hour in second gear—that level of panic, desperation, and adrenaline, forced to sit still and wait.
Jack’s symptoms improved a great deal after RT, and we wanted for him to attend school. He had really been wanting to go to school, always tagging along when I’d drop off Sophie-Marie at her preschools. The process was lengthy, but he attended the Agua Dulce Elementary Schools preschool program from the end of March to mid-June. He loved school! He lit up the room! He loved the bus! He was so excited to get on the bus and greet his friends, with their name and the first letter of their names: “Hi! You’re ‘P’ for Patti! You’re ‘R’ for Rosie, and you’re ‘P’ for Paul,” he would say, and off he would go, while I went back to preparing medicines, the morning chores, and being ready to greet him with his fresh juice when he got back 2 ½ hours later. Part of me didn’t want to part with him, but another part knew it was good for him, and also good for the people at school who got to spend time with him. I hope to include some of their stories someday.
The light that had come back to Jack’s eyes in February, March, and early April began to dim, on and off. Though I was hoping our naturopathic and holistic treatments would help, and I believe they did help him to be at his best, I “knew” somehow his tumor was re-organizing. April’s MRI showed a stable tumor, but there was no detailed communication about the bright spot(blood vessel nucleus) that had returned, apparently. By the end of May he seemed weaker to me, and then it happened in the beginning of June. I saw him drag his leg. Just for a second, then again in 2 days. Then he had a strange fever. I called the doctors… he appeared to be fine the next day. They couldn’t rush his MRI, scheduled for the end of June, unless he was admitted to the hospital. Jack had only a few days left of school, and he’d missed a day or two because of fever. I didn’t want to take that away from him. His last day of school was June 13, a Thursday, and then the next day was the Kindergarten class, Sophie’s class, picnic and playtime at Acton Park. This was his last trip to a park without needing assistance; I was terribly worried, though. He was so, so very careful, and his mind would drift off quite a bit. Within 3 days, Jack needed help climbing the playground steps and the next day, we took him to the clinic. He was starting to drool. They put him on decadron again, and told us we had “weeks”. I alerted everyone in social media circles that if they wanted to see Jack, “now” was the time; we had weeks left, maybe days.
The plan with the doctors was to keep him on the decadron for a Make-A-Wish trip to Disneyland. But a week later, Jack was not doing so well. We had had an opportunity, earlier when Jack was doing better, but they wouldn’t grant our first choice for him. The pressurization from the airplane, the stress of travel, no access to his natural treatments etc…would have been worth the risk to his health had he been able to have our first choice for him. The problem is, I had thought a long time about it and the idea came to me of what experience we could give Jack that would honor his life, that would be a once in a lifetime opportunity that any American would be proud to entertain, as well as bring some needed attention to his condition, for the other 2-300 kids that year diagnosed with DIPG, facing probable death. I wanted him to meet the President. And because the reps who came to visit us told us they’d never had a situation where the first choice wasn’t granted, I told my son that he would be able to meet the President. I wanted that so much for him, and he was so excited. I wanted to go back East and see family there anyway, family Jack hadn’t met yet. I feel I utterly failed him. Yet, as a parent, I was responsible for him in every way—he was only three. So, at their judgement that the wish was “inappropriate” for one his age, I was crushed.
Jack wasn’t feeling well for the Disneyland trip, but I must say that meeting the characters for an hour in the Make-A-Wish lounge was a very special experience. At first I was fearing we needed to take him back to the room; he was not feeling well. But he warmed up to the characters, and they were so moved by that fact themselves. I could feel those little actors being emotionally rocked to the core, seeing our despair, then our joy, and clearly seeing that Jack was not long for this world. Despite my personal issue with the wish two months prior, I am still grateful to that organization for what they did for our family. So, needless to say, Jack was more comfortable eating club sandwiches and French fries in his room with Daddy than running around Disneyland with Mommy and Sophie. He was getting a dark shadow behind his eyes and I could tell he was uncomfortable, and the medication didn’t make it any easier on his moods.
After our weekend, which ended July 4th, we came home and again, I consulted Douglas-James Cottrell, a clairvoyant and healer who does some of his work in the style of Edgar Cayce, Deep Trance Meditation or DTM. I had consulted him in April and he gave very good advice concerning diet and supplementation, and also, a fresh perspective on his overall physical condition as being “electrically deficient”, among other things. Rife therapy and supplements seemed to greatly increase his vitality for a short while, and his quality of life. So this was one, last-gasp attempt to find hope. Dr. Cottrell seemed very hopeful about possible therapies to research for this condition, and suggested hyperbaric treatments to stabilize the expansion of the tumor. We tried this with great hope, 2 weeks later, but it was apparent to me that it was too late. Other successes with gliomas have been noted early on in treatment, and as an adjunct to radiation. Dr. Cottrell had never seen a tumor like this before. I’m thinking that it would be good to collect more data from this kind of source, as well as others. Science is largely inspiration, and you never know where the next great idea is going to come from, directly or indirectly. It would be imprudent to ignore a possible wealth of information from a completely different perspective.
Finally Jack said, “the submarine’s not working, Mommy” and yet, we took him back one or two more times. The therapy was to be 5 x a week. We helplessly watched his condition deteriorate to respiratory failure. He went into labored respiration one Sunday evening, the 29th of July, and he died in my arms, at 6:40am the next morning, 7/30/12.
There are many details left out here, to be filled in gradually, one by one over time. Certainly I want to tell you all about his visit with the angels a few weeks before he died. They came to tell him he was going to go with them soon, that he had something important to do. Also I would like to share his pictorial conceptions of what was happening to him and how his understanding evolved, and taught us. Jack taught me more spiritually in his almost four short years than I learned from my entire life. For now I will save this brief story and post it, so that visitors to our site will see more than just the words spoken at his memorial, which was a very beautiful occasion. I thank you for taking the time to read this. I hope it helps someone out there. It is helping me to tell it to you, and so I thank you again.