Our family moved to the North East Santa Clarita Valley in December of 2008, just shy of 2 months past the Marek fire October 12 of that same year, when we unfortunately lost our home and 2 lifetimes of acquisitions combined. We felt very fortunate to find such a beautiful place to live, though 25 miles from our former home, in a completely different neighborhood and demographic. Sophie-Marie was just 2 ½, and Jack all of 6 weeks old when the fire tore through Lake View Terrace, and the Marek wilderness, taking our home in Kagel Canyon, and blowing over into the adjacent canyon claiming several mobile homes. It was one month before, and so was eclipsed by, the Sylmar fire of Nov. 14, 2008.
My husband Barry worked in the construction business as a general contractor and painting contractor, and lost tool sets for several different trades in that fire. We’d been unable to buy insurance for our belongings due to the location where we were renting. We’d just completed a new playroom for the kids, and an art studio for all of us… all vaporized. Needless to say, we had difficulty making ends meet over the next 2 years, on and off County assistance, and Section 8 assistance, and I still thank God for that assistance. We also had to let some friendships go that we thought would be forever, and finding a new niche in Agua Dulce has taken quite some time. I was a confirmed stay-at-home mom, but tried very hard over the course of these times to start home businesses and a new MOMS Club, neither of which were successful endeavors, but we tried very hard.
Sophie went to Bright Horizons preschool in Acton, and I’d cart Jack along with us, who wanted so much to go to school but he wasn’t old enough yet. There’s something I must say about Jack; during the time after the fire when we didn’t know where we were going to live, he would greet me each morning with the most amazingly huge smile! There was something about that little guy that kept me going. I loved my Sophie so very much, and she was struggling with night terrors and all sorts of difficulties you can imagine a toddler would have at losing the only home she ever knew. But Jack the infant was that constant reminder that everything was ok, and the only thing that mattered was that we were together and that we loved one another.
Jack was a robust little baby boy, and then as he grew past a year, past 18 months, he seemed much more “slight” and careful than other boys his age. I honestly didn’t get a lot of opportunities to compare, but something seemed a little off to me. We switched doctor’s offices and at 2 years his blood was found to be low in iron. We got it back up, after being very creative with eggs for a while ( I knew he wouldn’t take the medicine), but still he was slight and he was still not wanting to eat much other than nursing. I was concerned. After another 6 months, I was worried that my very articulate little man’s speech seemed to be less agile than other boys his age, after observing another mom and her little boy at my daughter’s gymnastics class. I had a very sinking feeling in my stomach. He began having fevers with no other symptoms except headache, and they’d go as quickly as they came, so the office would say not to bring him in unless he had a fever for more than 48 hours. He started limping and getting scared at looking up at the ceiling from the shopping cart, and finally his speech was slurring…I demanded an appointment Monday Oct. 24 2011 and the doctor had me take him directly to Children’s Hospital Los Angeles, which of course I did. I was glad to have the neurological notes from my doctor to give to the emergency room staff. He was put immediately on the neurological testing track, but it was 5 days before we could have the MRI. All the tests in those 4 days prior showed nothing definitive.
About half-way through his MRI on Friday, October 28, 2011, I got a call from his doctor that had been attending his case throughout our stay; he wanted me to come back up to the room. I had gone down to the meditation garden in front of the hospital. I ran up to the room. Both he and his colleague that had been taking care of us said, ”There is a mass in his brainstem, and we wanted to be the first to let you know because all of your doctors are going to change; you’ll be with a whole new team. We didn’t want you thrown into a new situation without hearing word from us…We can’t say what it is yet, but we do know there is a mass.” For both, their eyes were welling, and I knew that they knew exactly what they were talking about. I appreciated very much their preparing me, preparing me for the very worst.
When Jack’s beeper went off I ran as fast as I could through the corridors carefully avoiding the others walking quite casually, to radiology where he was waking up; the nurse, seeing my panicked look said, “oh he’s just fine, just fine…” which, to all appearances was true, but knowing of the mass made it impossible to drop my internal panic. The next thing I knew I was in a small room with about 12 doctors and nurses for the diagnosis announcement. DIFFUSE INTRINSIC PONTINE GLIOMA, “Yes it’s cancer”, though somehow that comment didn’t register very well. We were told that radiation therapy could prolong his life, but eventually the tumor would rebuild and at that point of “progression”, there would be nothing more they could do. No chemotherapies to date had changed the terminal outcome, but some showed promise of prolonging life in conjunction with the radiation, but not without side-effects. None of the chemos suggested appealed to me. We decided right away to move forward with radiation, which would require that Jack be sedated daily for treatment, so plans were made to surgically insert a portocatheter, or “port” as we came to know it. I let the doctors know that I didn’t feel right moving forward with chemotherapy at that time, but we were not closing the door. I didn’t find anything suggested as a possibility at that time, written down by the nurse on my picture of Jack’s brain with “Diffuse Intrinsic Pontine Glioma” written on it also, worth the horrible side effects in possible benefit. We were putting quality of life as our priority, and radiation could possibly buy us some time. The doctor team assured us that our decision was the best possible one for our son.
That night I searched wildly on the internet for DIPG. What I found did not reassure me. What I found was that there were no survivors, and I continued to search for the next year, not wanting to believe that was true(though NOWHERE did it say that) and came up, each time, with the same answer. The doctors told us that there were no known common denominators for DIPG. Immediately, I began mercilessly scouring the past in my mind, actions I’ve taken, hair dyes I’ve used, past dysfunctions I had had, looking for the cause. There were no questionnaires, no forms, no opportunities to give blood or DNA to be studied. There was no active research of this kind taking place at the hospital! 2-300 children a year diagnosed in this country, median survival time 9 months post diagnosis—hence they all die, and I’d never heard of it. Of pediatric brain tumor mortalities, DIPG takes roughly 80%. And I’d never heard of it! I began to think that, you don’t hear about the cancers with which the medical profession has no success. This is unacceptable considering the children and families suffering year after year! I thought, maybe it was because I was 41 when I had Jack. “No,” the doctors told me, “age doesn’t seem to be a common denominator here, nor does diet, ethnicity, or socio-economic status.” So, clearly some research had been done, but entirely not enough.
On that day of diagnosis, I called my husband frantically with the news of a mass and that he needed to come down to LA with Sophie for the diagnosis. We didn’t even have money for gas at that point, but our dear friend Katrin loaded up her kids, Barry and Sophie and came down. Friends from church also came to support us. My friend Michele came to visit me that night, and the night after. Both these two ladies began a wave of community support for us that we will never forget. All those being so supportive were “Jack’s Angels” to me. That night, I vowed with every fiber of my being to be in service to God, and asked him to “put me to work.” That I knew, I somehow knew, that there was good in this blackness with absolutely no hope, seemingly, and I was determined to be open and willing enough to find it.
The doctors seemed very open to our exploring alternative therapies, understanding that we must be in complete communication about it so that nothing would interfere with the radiation therapy. They conceded that indeed, there was so much they didn’t know, and would be grateful to learn of some natural therapy that could help. However, they could not recommend anything. So, thus began our quest to be experts on naturopathic therapies—QUICK!—within 9 months, or however long we had…another very unfortunate position in which to find oneself. Of course, we never became experts, but became much more aware of the need for there to be a little more nature-reverence in medicine, and more research into holistic therapies. The two worlds are necessary for a new and more evolved understanding of medicine, and nature.
I wish I could tell you that we found the one thing that could help. I wish I could tell you that I didn’t believe in a God that allowed little children to die. I can tell you that life is much, much more than I had ever allowed myself to imagine, and that it is good. Today, I can tell you that I am grateful, so grateful for the time that I did have with my Jack, and that sometimes people only come into our lives for a short time, relatively speaking, and we don’t always know why immediately. I know today that Jack woke me up to life. I had been praying for a stronger spiritual direction, yearning for it; while this tragedy didn’t appear to be an answer to that prayer, it was indeed part of the celestial equation that continues revealing itself to this day, and for the rest of my life.
We began our brave journey down the 14, to the 5, to the 170, to the 101 into LA each day for 6 weeks starting Nov. 7 2011, after our first session while in the hospital November 4. I joked with myself saying, “If we survive the traffic like this for 6 weeks, our odds of survival will significantly increase”, but then I’d stop smiling, knowing statistics don’t work like that, but it was worth a shot. Jack was not feeling well. “No. No. No!” He would say all the way down. When a technician asked him a question, he’d say “No.” I wondered if I’d ever see my happy little boy again. The steroid medication he was on to control the brainstem inflammation made him extra irritable as well, and demanding French fries at 2am. After about 2 weeks, slowly, he started smiling again. He started to say “Yes!” to the technicians, and liked getting his number checked before his radiation treatment. “James-William Demeter, 1869499” forever etched in my memory also. Jack had a follow-up MRI Jan. 11, 2012 showing a 50% reduction of the tumor. The doctors were elated, “We have some time,” they said.
Jack slowly got his strength back, and he was tapered off his decadron (steroid) medication during radiation therapy or “RT”, thank God. A local charity adopted us for Christmas, making it magical for both the kids. Neighbors in the community donated Disneyland tickets to us, which we enjoyed. As soon as I could, I enrolled Jack in preschool, because I knew how much he wanted to go to school, and loved the playground. A childhood friend sent Jack a tiny violin, after learning that he wanted to play. Jack loved that violin until the end. Friends raised money for us so we could afford to do different naturopathic therapies. A local N. D. and D.A.O.M. offered their services to Jack for free, and an osteopath as well. The goodness of people around us overwhelmed us, and renewed our love and faith in our fellow human beings.
Jack enjoyed a few good months of fun and play, but always, the reality of his condition was a constant source of anxiety. By that April and May, I was sure that the tumor was reorganizing. He started getting a little weaker and then, at the very beginning of June, I saw it. I saw him drag his leg. I asked him to run again and I didn’t see it, but I knew I saw it before, and I became consumed with worry. The next week or two was his last time in school. He had a day or two, separated quite a bit, of fever. The doctors said they couldn’t move up his MRI unless he were admitted to the hospital, and it was slated for the 27th. He only had a few days of school left. I couldn’t take that away from him. His last week he fell twice, breaking his heart, and mine. I think it bothered him because he knew what was happening. I took him to Acton Park one last time, that he could go; that was June 14 for Sophie’s kindergarten class graduation party. He enjoyed the park so much, but I could see that he was getting weaker, and would drift off. Within 4 days I had to help him climb the stairs at Canyon Country Park, and 2 days later I took him to the hospital, and he wouldn’t be attending summer preschool. So, less than a week after school got out he could barely sit up.
This was the official news of the dreaded, “Progression” phase. We asked how long he had; they said, “weeks”. They put him back on decadron, which made it possible for him to walk and play again, though temporarily, so he could go on a Make-A-Wish Disneyland trip for a weekend. Two weekends later was a musical benefit that we’d been planning and then, when progression started, I abandoned and my friend Suzan completely made it happen. We were trying hyperbaric therapy to control the tumor, but it was too late. Hospice started coming to visit, for which I became more grateful as it seemed he was showing signs of being near the time. He had one near bout of respiratory difficulty, recovered after much sleep, but then entered respiratory failure at 6pm July 29, 2012. I had gone out to get him some chocolate cake, which he had requested, so I took Sophie with me to do some shopping. I felt uneasy the whole time we were out. I called as we were on our way home, and Barry told me he was “sleeping”. I had seen a newspaper in my mind’s eye with obituary notices on it. I had just bought him balloons and giant twisty flowers; we came home and he started throwing up. He seemed very upset to have dirtied his shirt(Jack was very neat) and demanded another one, which I replaced in a frantic scramble, and then he asked to go upstairs. We had imagined he would want to be up in the bedroom, where he met the angels a few weeks prior. They had come to gently tell him that he would have to come with them. Jack took his last breaths at 6:40am, Monday, July 30, 2012, and was born into the Light, after being surrounded by family and friends in prayer and love.
At the time of his diagnosis, and the selfless acts of kindness that proceeded from strangers and friends in the communities of Acton, Agua Dulce, and Santa Clarita, I had made the decision to one day start a foundation called “Jack’s Angels.” It took me a few more months to get moving, when I realized that no one was going to do this for me just because I had the idea!—no, I had to take action on my idea. So, we incorporated and then applied for 501(c)3 status in Feb, 2013, receiving acceptance on April 17 2013, one month prior to our first scheduled fundraising event for Children’s Hospital Los Angeles. For that application, I did some research into the question of, “How can one directly give to specific research, for a condition like DIPG?”—especially if one’s amount of money is modest, as it would have to be in our beginnings. I discovered another foundation for DIPG and finding the cure for all cancer online, that I was not able to find a year prior when Jack was diagnosed. I was thrilled to see the interest they were gathering, and the monies they were collecting for various clinical trials. I immediately inquired about donating a percentage of our start-up (which was very modest), just to set a percentage precedent of what bottom line we would give to research on a yearly basis. I found there was no way to guarantee that money would go to research, but to their yearly symposium—which is very important, mind you, but perhaps better suited to those foundations with substantial endowments. I wanted whatever money we could raise to directly affect research and to help it move forward, so I went to the doctors who have watched DIPG’s pass through their hospital for decades to answer my biggest questions.
So where are the greatest challenges to research, and what could we possibly do to help effectively, being of modest means in our beginnings? I interviewed Dr. Girish Dhall, and Dr. Jonathan Finlay at Children’s Hospital Los Angeles for insight. What they reported was that the hospital lacked funding for the personnel infrastructure necessary to process and carry out some clinical trials, that federal funding has taken some serious cuts and that the hospital relies heavily on the private sector for this funding. Clinical trials will cover the patient, but for efficient research, this infrastructure element is essential to progress, and for developing new research protocol. Biopsy sampling, autopsy sampling, field research, cross-referencing sampling from families for genetic research, all requires funding, and jobs. With this information that was readily apparent, I felt confident in moving foward with the idea of giving to our local children’s research institution in a DIPG fund for specific research in pediatric brain tumors.
In beginning our organization, our articles of incorporation stress three principles, that A. we raise awareness and funds for DIPG research, B. we support the afflicted, C. that in raising awareness for DIPG, we support the arts and education for children in the local community. I personally believe that each one of us contains a very powerful consciousness that has the potential to be a significant force in the world, and that we are here to collaborate with those forces to find solutions and new ways to approach our challenges. Perhaps we will never be a financial giant, but if we can encourage others to organize around the country to start research funds at their local/regional research institutions for pediatric brain tumors, the leading cause of cancer-related death in our children, we will have helped begin to affect change in those statistics, and hopefully, the experience of the families of DIPG diagnosed children, that there be hope for survival. We would also like to see an increase in use of diagnostics for children’s cancer, that it not be a last resort, not for our children.
The Michael Hoefflin Foundation supported our family throughout Jack’s last months with us and after his death. They continue to be a pillar of support in our community, not just for us but for so many families affected by childhood cancer. The Hoffmann Hospice, a non-profit group, continues to look after my Sophie in weekly grief support groups. I was also very, very pleased, just before “Art for Jack”, to make the acquaintance of Lisa Solis DeLong, local author and public speaker, who is starting “Justin Time Children’s House”, a community of support for grieving children and their families. We hope to participate with them in a supportive way in our community.
As political as I will ever get–and honestly appreciative–is to mention how, in our very modest beginnings, supportive the local officials of Santa Clarita and Agua Dulce have been. In planning “Art for Jack, Celebrating Children’s Art” last May, I joined the Santa Clarita Chamber of Commerce, which I found an incredibly progressive and successful group, and very supportive to Jack’s Angels and all the other non-profits that are part of this Santa Clarita Valley, and exceptionally numerous at that. Like me, they had never heard of DIPG before, though the degrees of separation are narrowing fast. Many who are just learning about DIPG are wondering why they hadn’t heard of it before, as I asked myself. Mayor Kellar of Santa Clarita was kind enough to welcome our Foundation’s event to the greater Santa Clarita area. He made an appearance at the event and spoke kindly of us at the following City Council meeting. I am very glad I made it to that meeting; I was thoroughly impressed with our City Council, not just in their experience and expertise, but in their governing from the heart, always in light of that experience. It made me think we need a little more of this in Washington.
Jack’s Angels is planning art classes and musicianship/choir workshops for 2014. Jack has given me the gumption to move forward to create programs to support the arts for children. It’s what I want for my daughter, would have wanted for him, and what I’d like to see continue into the future for children. We are fortunate to have an Arts Council in Acton/Agua Dulce that supports the beginnings of a community orchestra; we’re fortunate to have a community opera company, Center Stage Opera, but still lacking a reliable children’s choir. I thought we should work on supplying them with one, while supplying children with the basics they can use for learning an instrument, ensemble playing, singing, etc… Our art teacher Heidi Vaughn taught art at the Buckley School in Sherman Oaks for over 32 years, and will be starting classes for us this January, location and schedule to be announced at www.artforjack.org . Our fundraising event for this season will be Sunday, Nov. 24 at West Ranch H.S. Performing Arts Center, 4-8pm, with classical artists, young performers, and finishing off with contemporary and rock and roll artists. Information will be posted Monday, October 7th for that event, and sponsorships are available for this event as well at www.musicforjack.org.
I almost cancelled this concert three times; this last summer was very hard going through July, and then August 30th was Jack’s 5th birthday. He died one month shy of his 4th birthday. There were cancellations and illnesses. But, here are all of these amazing artists, still willing to show up for our cause, and another chance to raise funds for the DIPG research fund at Children’s Hospital Los Angeles. I cannot, not try, at the very least, to move forward being personally aware of children dying of DIPG right now, and families suffering the same trauma that changed our lives forever.
Thank you for your attention to those afflicted by this uncompromising disease; today, there may be as many as 300 in our country.
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