{"id":599,"date":"2013-08-27T19:16:26","date_gmt":"2013-08-27T19:16:26","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?page_id=599"},"modified":"2016-01-09T14:34:39","modified_gmt":"2016-01-09T22:34:39","slug":"jacks-story","status":"publish","type":"page","link":"https:\/\/jacksangelsfoundation.com\/?page_id=599","title":{"rendered":"Jack’s Story"},"content":{"rendered":"

\"cropped-cropped-tree-photo\"<\/a>Short version: \u00a0Jack’s Story<\/a><\/p>\n

“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. <\/i>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\u2026 <\/i><\/i><\/p>\n

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.” <\/i><\/i><\/p>\n

(This comes from Jack’s Caring Bridge Website, <\/i>www.caringbridge.com\/visit\/JackDemeter<\/i><\/a>) <\/i><\/p>\n


\n<\/i>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.<\/i><\/p>\n

We were very fortunate to have such an amazing doctor team at Children\u2019s 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\u2019s 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.<\/p>\n

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\u2019t have been able to afford without this help. One friend started what we came to call “Jack\u2019s Fund”, setting out donation cans around the local community. Another friend started a Jack Day each Wednesday at Chili\u2019s in Canyon Country. A charity adopted us Christmas 2011 so that Jack\u2019s 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.\u00a0 We were truly humbled to the beauty and goodness of the people all around us, continuing\u00a0to 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;\u00a0that 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.<\/p>\n

A longer version of Jack’s Story can be found by following this link<\/a>, or reading on below:<\/p>\n

\"IMG_3722\"<\/a>

click here for post<\/p><\/div>\n

 <\/p>\n

 <\/p>\n

\"baby1.0\"<\/a>Jack, James-William Gregory Demeter, was born a healthy baby boy, 7 lbs-7oz, 22\u201d, a Saturday Night little man at 11:36pm, Aug. 30, 2008.\u00a0 Our Sophie-Marie was nicknamed \u201cBoo\u201d for the little girl in Monster\u2019s Inc<\/span>, and Jack-Jack was for the little guy from The Incredibles<\/span>.\u00a0 Needless to say, we were Pixar fans.\u00a0 Actually, Jack was named for my grandfather Marsh, James Randall Marsh, known as Jack by his friends.\u00a0 I never got to meet him; he died a year before I was born.\u00a0 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.\u00a0 I\u2019ve felt that way about my father since I was a child, so it just made sense.<\/p>\n

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.\u00a0 I looked out the window to the southeast to see an ominous orange glow beyond the ridge.\u00a0 Between us and that fire, there was nothing but dead brush and ticks just waiting to be burned.\u00a0 I knew.\"dcp_0014\"<\/a><\/p>\n

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\u2019s accumulation of riches in \u201ccool stuff\u201d.\u00a0\u00a0 So, when Sophie-Marie came along in 2006, our lives were changed forever for the good, and then 2 \u00bd years later with Jack, even better.\u00a0 However, we were renters and could not get any company to insure our property, due to the fire hazard zones.\u00a0 We were right up against the Angeles Forest in a canyon that had burned 30 years prior.\u00a0 Barry was in construction and had tools for several construction trades, and mechanics tools from when he had worked as a mechanic.\u00a0 We\u2019d 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.\u00a0 We had also just created a wonderful playroom with all Sophie\u2019s favorite music and toys, with preparations for Jack.\u00a0 We\u2019d acquired horse equipment and had 2 horses.\u00a0 It was all vaporized that early morning, Oct. 12 2008.\u00a0 Jack was 6 weeks old.<\/p>\n

\"n513785823_1895233_8864\"<\/a>We spent 10 days at my father\u2019s house and then 5 weeks in a friend\u2019s 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.\u00a0 During that time of uncertainty, tiny Jack would greet me each morning with an enormous smile.\u00a0 There was something special about this little guy.\u00a0 While my sweet Sophie struggled with night terrors and understandable fears and emotions for a 2 \u00bd year old who had lost the only home she ever knew, Jack the infant appeared very calm and serene, giving that feeling that \u2018everything is really all right\u2019.\u00a0\u00a0 He continued to be that sweet, happy baby with a huge smile. \u00a0 My concern for him grew\"100_0326\"<\/a> over the time he was about 20 months to 2 \u00bd; there was nothing obviously wrong but little things that my gut told me were somehow significant.\u00a0 For example, when he was a baby, I noticed(when at my friend Patricia\u2019s house) that my little baby didn\u2019t seem as vivaciously \u2018present\u2019 in his energy as her little baby boy, approximately the same age.\u00a0 We attributed it to personality.\u00a0 Patricia always appeared to be in love with him and very protective of him.\u00a0 He was very present\u2014I just don\u2019t know how to describe very well these nuances of vitality, of manifested energy.\u00a0 It\u2019s like something in him was a little sluggish, but I didn\u2019t know what.<\/p>\n

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.\u00a0 It was beautiful and rural, like we wanted, but I wouldn\u2019t call it ideal for raising young children.\u00a0 5 acre or more plots without a playground or any kind of cohesive community structure, at least not for a newcomer, there was no\u00a0 \u201cWelcome Wagon\u201d, I should say. \u00a0We moved into our current home, \u201cJack\u2019s house\u201d, in December of 2008.\u00a0 As Jack got bigger he started crawling a little late, around 10 months, and then started walking at 13 months.\u00a0 \"100_0281\"<\/a>This isn\u2019t that unusual, mind you, but his sister developed a few months earlier.\u00a0\u00a0 However, she didn\u2019t do much crawling until after she started walking, so it was hard to judge at that point.\u00a0 When Jack was 18 months old, I \"Heather2\"<\/a>switched pediatricians because the office was not what we wanted\u2014unresponsive, unpleasant technicians, too many patients for this doctor.\u00a0 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.\u00a0 So we got that to improve through creativity with eggs.\u00a0 He was also slight in his physique, seemingly, compared to his peers.\u00a0\u00a0 This could be attributed to personality or individual characteristics rather than something \u201cbeing wrong\u201d with him, but it didn\u2019t sit well with me.\u00a0 Other than those things, he was a happy, smart little boy who loved drawing, painting, and books.\u00a0 Jack could sit with books for long periods of time.\u00a0 And Jack loved the playground, and the beach whenever we got to go.\"dcp_0032.0\"<\/a><\/p>\n

\"100_3610\"<\/a>Around the time of his third birthday, I noticed his speech was, seemingly, not as precisely executed as he was capable of doing.\u00a0 I became very worried about how \u2018careful\u2019 he was with himself physically.\u00a0 He had a few headaches and mysterious fevers with no other symptoms.\u00a0 The doctor\u2019s office would say to not bring him in unless the fever had been present for more than 2 days, and it always cleared up.\u00a0 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.\u00a0 He was generally irritable in the car.\u00a0 He suddenly became upset when looking up from a shopping cart\u2014would start crying\u2026and then, the last straw, he began to limp.\u00a0 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\u2019s Hospital Los Angeles.\u00a0 That was October 24, 2011, and Jack was diagnosed from an MRI scan Friday, October 28, 2011 with Diffuse Intrinsic Pontine Glioma, or DIPG.<\/p>\n

\"EEG<\/a>

EEG test<\/p><\/div>\n

In the hospital he amazed the staff with his love of letters, numbers, and plane geometry.\u00a0 \u201cParallelogram\u201d and \u201ctrapezoid\u201d were part of the daily conversations and drawings.\u00a0 He could count well into the hundreds and knew his alphabet in English, French, and was learning it in other languages on u-tube.\u00a0 However, this didn\u2019t last; I couldn\u2019t believe how quickly his personality was disappearing.\u00a0 He was angry and uncomfortable, and only managed to enjoy playing occasionally during the first few days we were in the hospital.<\/p>\n

Immediately Jack was put on Decadron, a steroid medication, and his agitation increased.\u00a0 He was to start radiation Nov. 3, and on Nov. 1 he would get his \u201cport\u201d or portacatheter surgically inserted.\u00a0 Those few days were hard.\u00a0 At the time I did not realize that the tumor was growing fast and he was not long from death without the radiation.\u00a0 I feared my Jack would never walk normally again.\u00a0 Then, after decadron, he lost interest in going to the playground.\u00a0 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\u2019s eyes(probably siblings of children in the hospital) at seeing his jerky gait and difficulty getting around.\u00a0 But Jack was determined to enjoy the playground, though dismayed that his body wouldn\u2019t do what he wanted it to do, until a couple days later, and then he didn\u2019t want to go at all.\u00a0 I began fearing I\u2019d never see my son\u2019s happy personality again.<\/p>\n

\"Grandma's<\/a>

Grandma’s birthday, 11-15-11<\/p><\/div>\n

The first couple weeks of \u201cRT\u201d, radiation therapy, were difficult.\u00a0 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.\u00a0 He would just repeat \u201cNo, No!\u201d all the way down to LA.\u00a0 It was 35 miles, but in morning Los Angeles traffic that could mean 1-2 hours.\u00a0 I had a running joke with myself that if we could survive 6 weeks of traffic like this, Jack\u2019s probability of survival would increase at least 20 percent\u2026yet it was just that, a \u201cplaisanterie\u201d\u2014my mind goes to the French word\u2014for it was just to please me, distract myself from the dark certainty in my gut that I was going to lose my son.\u00a0 I just didn\u2019t know when.<\/p>\n

\"DCIM100SPORT\"<\/a>Miraculously, Jack began to say, \u201cYES\u201d to the RT technicians and smile for them on the approach to the RT room.\u00a0 It was a smile that took substantial effort, and he didn\u2019t want to let go of it once he got it on.\u00a0 He finished RT with flying colors, a certificate, to be followed by a trip to Disneyland out of our neighbor\u2019s charity.\u00a0 Then there was a month\u2019s wait to find out how effective the therapy had been from another MRI scan.\u00a0 He had begun to walk again on his own, and\"DCIM100SPORT\"<\/a> try to run!\u2014but he would fall, because of the quick weight gain from the steroids and muscle weakness.\u00a0 I was so happy that our doctor tapered him off the steroids during the RT.\u00a0 He was unhappy while taking that medication, and didn\u2019t resemble his normal self.\u00a0 I hoped he\u2019d start looking and feeling like his old self again; gradually, he did over the next month.\u00a0 On January 11, 2012, his MRI scan showed a 50% reduction of the tumor.\u00a0 The doctors smiled, \u201cwe have some time\u201d, they said.<\/p>\n

\"Jack<\/a>

Jack at Chili’s to celebrate<\/p><\/div>\n

We had worked very hard at supplementation with brain antioxidants at night and naturopathic\/holistic medicine to help his body tolerate the radiation.\u00a0 However, we did not want in any way to interfere with the radiation\u2019s affecting the tumor.\u00a0 We worked closely with our doctors for this purpose.\u00a0 However, Jack was very difficult to treat with therapies that involved swallowing things or eating things.\u00a0 Many of the chemotherapy protocols involve pills which he could not have taken.\u00a0 I couldn\u2019t even get him to drink a decent amount of water, and getting natural\u00a0treatments to a therapeutic level was a constant challenge that we were not able to effectively meet.<\/p>\n

We were not opposed to considering clinical trials or chemotherapy, it\u2019s just that at the time there wasn\u2019t anything promising to consider\u2014we relied upon our doctors to inform us and I wish I had heard about Dr. Souweidane\u2019s clinical trial in time.\u00a0\u00a0 In this trial the tumor is physically accessed and medicine directly deposited, with the hope of extending life. (see the page on Research)\u00a0 I was two weeks late in finding it.\u00a0 Patients couldn\u2019t be beyond 12 weeks post RT.\u00a0 We considered a clinic in Germany but were without the means to afford it, involving hyperthermia and Rife technology combined.\u00a0\u00a0 They had never treated anyone Jack\u2019s age.\u00a0 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.\u00a0 We did ozone therapy in the \"Image0492\"<\/a>ears, not the most effective method but the only practical one for a 3 year old.\u00a0 Jack would watch u-tube while he had his ozone treatments.\u00a0 We stayed as close as we could to ketogenic diet as we could.\u00a0 I made bone-broth soups with vegetables and made cookies from nut meats and stevia, and used our juicer as much as possible.\u00a0\u00a0 Tough to administer to a kid without much appetite!<\/p>\n

I must mention that \u00a0Jennifer Wicher, N.D., \u00a0D.O. Arsen Nalbandyan and D.A.O.M. Aram Nalbandyan donated their services to assist Jack.\u00a0 Dr. Wicher provided infusions and dietary\/supplemental direction, and the Osteopath and\u00a0 Doctor of Oriental Medicine donated their services.\u00a0 I remain grateful for their help.\u00a0 At the end, Dr. Kochan in Sherman Oaks generously helped us at the very last minute, never giving up hope.<\/p>\n

\"Image0440\"<\/a>Friends immediately rallied around us for support.\u00a0 This was the inspiration for Jack\u2019s Angels, as well as our Foundation\u2019s name.\u00a0 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.\u00a0 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\u2014that level of panic, desperation, and adrenaline, forced to sit still and wait.<\/p>\n

Jack\u2019s symptoms improved a great deal after RT, and we wanted for him to attend school.\u00a0 He had really been\"DCIM100SPORT\"<\/a> wanting to go to school, always tagging along when I\u2019d drop off Sophie-Marie at her preschools.\u00a0 The process was lengthy, but he attended the Agua Dulce Elementary Schools preschool program from the end of March to mid-June.\u00a0 He loved school!\u00a0\"Stage\"<\/a> He lit up the room! \u00a0He loved the bus!\u00a0 He was so excited to get on the bus and greet his friends, with their name and the first letter of their names:\u00a0 \u201cHi! You\u2019re \u2018P\u2019 for Patti!\u00a0 You\u2019re \u2018R\u2019 for Rosie, and you\u2019re \u2018P\u2019 for Paul,\u201d 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 \u00bd hours later. \u00a0Part of me didn\u2019t 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.\u00a0 I hope to include some of their stories someday.<\/p>\n

The light that had come back to Jack\u2019s eyes in February, March, and early April began to dim, on and off.\u00a0 Though I was hoping our naturopathic and holistic treatments would help, and I believe they did help him to be at his best, I \u201cknew\u201d somehow his tumor was re-organizing.\u00a0 April\u2019s MRI showed a stable tumor, but there was no detailed communication about the bright spot(blood vessel nucleus) that had returned, apparently.\u00a0 By the end of May he seemed weaker to me, and then it happened in the beginning of June.\u00a0 I saw him drag his leg.\u00a0 Just for a second, then again in 2 days.\u00a0 Then he had a strange fever.\u00a0 I called the doctors\u2026 he appeared to be fine the next day.\u00a0 They couldn\u2019t rush his MRI, scheduled for the end of June, unless he was admitted to the hospital.\u00a0 Jack had only a few days left of school, and he\u2019d missed a day or two because of fever.\u00a0 I didn\u2019t want to take that away from him.\u00a0 His last day of school was June 13, a Thursday, and then the next day was the Kindergarten class, Sophie\u2019s class, picnic and playtime at Acton Park.\u00a0 This was his last trip to a park without needing assistance; I was terribly worried, though.\u00a0 He was so, so very careful, and his mind would drift off quite a bit.\u00a0 Within 3 days, Jack needed\"DCIM100SPORT\"<\/a> help climbing the playground steps and the next day, we took him to the clinic.\u00a0 He was starting to drool.\u00a0 They put him on decadron again, and told us we had \u201cweeks\u201d.\u00a0 I alerted everyone in social media circles that if they wanted to see Jack, \u201cnow\u201d was the time; we had weeks left, maybe days.<\/p>\n

The plan with the doctors was to keep him on the decadron for a Make-A-Wish trip to Disneyland.\u00a0 But a week later, Jack was not doing so well.\u00a0 We had had an opportunity, earlier when Jack was doing better, but they wouldn\u2019t grant our first choice for him.\u00a0 The pressurization from the airplane, the stress of travel, no access to his natural treatments etc\u2026would have been worth the risk to his health had he been able to have our first choice for him.\u00a0 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.\u00a0 I wanted him to meet the President.\u00a0 And because the reps who came to visit us told us they\u2019d never had a situation where the first choice wasn\u2019t granted, I told my son that he would be able to meet the President.\u00a0 I wanted that so much for him, and he was so excited.\u00a0 I wanted to go back East and see family there anyway, family Jack hadn\u2019t met yet.\u00a0 I feel I utterly failed him.\u00a0 Yet, as a parent, I was responsible for him in every way\u2014he was only three.\u00a0 So, at their judgement that the wish was \u201cinappropriate\u201d for one his age, I was crushed.<\/p>\n

\"DCIM100SPORT\"<\/a>Jack wasn\u2019t 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.\u00a0 At\"DCIM100SPORT\"<\/a> first I was fearing we needed to take him back to the room; he was not feeling well.\u00a0 But he warmed up to the characters, and they were so moved by that fact themselves.\u00a0\u00a0\u00a0 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.\u00a0 Despite my personal issue with the wish two months prior, I am still grateful to that organization for what they did for our family.\u00a0 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.\u00a0 He was getting a dark shadow behind his eyes and I could tell he was uncomfortable, and the medication didn\u2019t make it any easier on his moods.<\/p>\n

After our weekend, which ended July 4th<\/sup>, 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.\u00a0 I had consulted him\"Stage\"<\/a> in April and he gave very good advice concerning diet and supplementation, and also, a fresh perspective on his overall physical condition as being \u201celectrically deficient\u201d, among other things.\u00a0 Rife therapy and supplements seemed to greatly increase his vitality for a short while, and his quality of life.\u00a0 So this was one, last-gasp attempt to find hope.\u00a0 Dr. Cottrell seemed very hopeful about possible therapies to research for this condition, and suggested hyperbaric treatments to stabilize the expansion of the tumor.\u00a0 We tried this with great hope, 2 weeks later, but it was apparent to me that it was too late.\u00a0 Other successes with gliomas have been noted early on in treatment, and as an adjunct to radiation.\u00a0 Dr. Cottrell had never seen a tumor like this before.\u00a0 I\u2019m thinking that it would be good to collect more data from this kind of source, as well as others.\u00a0 Science is largely inspiration, and you never know where the next great idea is going to come from, directly or indirectly.\u00a0 It would be imprudent to ignore a possible wealth of information from a completely different perspective.<\/p>\n

\"Stage\"<\/a>Finally Jack said, \u201cthe submarine\u2019s not working, Mommy\u201d and yet, we took him back one or two more times.\u00a0 The therapy was to be 5 x a week.\u00a0 We helplessly watched his condition deteriorate to respiratory failure.\u00a0 He went into labored respiration one Sunday evening, the 29th<\/sup> of July, and he died in my arms, at 6:40am the next morning, 7\/30\/12.<\/p>\n

There are many details left out here, to be filled in gradually, one by one over time.\u00a0 Certainly I want to tell you all about his visit with the angels a few weeks before he died.\u00a0 They came to tell him he was going to go with them soon, that he had something important to do.\u00a0 Also I would\"Stage\"<\/a> like to share his pictorial conceptions of what was happening to him and how his understanding evolved, and taught us.\u00a0 Jack taught me more spiritually in his almost four short years than I learned from my entire life.\u00a0 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.\u00a0 I thank you for taking the time to read this.\u00a0 I hope it helps someone out there.\u00a0 It is helping me to tell it to you, and so I thank you again.<\/p>\n","protected":false},"excerpt":{"rendered":"

Short version: \u00a0Jack’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\u2026<\/p>\n

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