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| Analyse, a happy child, was diagnosed with a rare pediatric cancer. |
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| A fund raising effort is underway to support the expense of treatment of Analyse's rare cancer. |
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| Little Leah Merklin is almost five and has survived DIPG far longer than the doctors pre- dicted. And she's going strong. Her mother said it was all due to her giving her child medical marijuana, a last ditch gesture, which seems to have somehow arrested the growth of the tumor. |
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| The tumor grows between nerves. |
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There is no grief like the grief that does not speak.
Seven year old Analyse Gibas of Niagara Falls is battling Diffuse Intrinsic Pontine Glioma (DIPG), a rare pediatric brain tumor that usually strikes children between the ages of 5 and 7.
About 350 children are diagnosed in North America annually.
Fewer than 10 percent survive two years from diagnosis of what is a tumor which infiltrates the brain stem and grows amidst the nerves - making surgery not an option.
Analyse's grandmother, Candra Thomason and family friend Joseph Swartz have organized an online fundraising effort through YouCaring, asking friends and community for aid to help Analyse.
"Medical bills are mounting, and any help for her family in these tough times are much needed and greatly appreciated," Thomason writes on the YouCaring website.
Analyse is undergoing care at Women and Children's Hospital and receiving radiation therapy through Roswell Park Cancer Institute in Buffalo.
Radiation treatments typically alleviate the disease, temporarily, hopefully shrinking the tumor. The clock is ticking. Doctors know that sometimes - usually -in a few weeks or a few months - DIPG returns, and more aggressively than ever.
One of the most resistant of cancers to chemotherapy, DIPG remains the most fatal type of cancer, with an official cure rate of zero.
One bleak news report said DIPG "kills 90 per cent of its patients within two years, most within 12 months. The other 10 per cent, doctors think, were likely misdiagnosed."
While some children live longer than two years, prolonged survival does not mean cure - but rather that some children beat the odds. But the tumor remains - stable - - making life a constant battle - for child and parents alike.
And with doom forecast - sooner or later - with death being a spurt of tumor growth away, hovering over the illness-clouded dreams of childhood and the guarded hope of parents is the specter of renewed growth of a long stable tumor.
Analyse's parents, Rick and Kristy Gibas, are looking into hospitals and clinics around the world that specialize in DIPG, and exploring the possibilities of clinical trials and pioneering or alternative treatments.
The family has set a 60 day goal to raise $125,000, a not unreasonable estimate for costs associated with any serious attempt to try to save Analyse, or prolong her life - which may include relocating her to where she may receive experimental treatments.
As of Monday, $6,599 has been raised to help Analyse through 53 supporters.
Thomason and Swartz wrote on YouCaring, "When Analyse's radiation treatments are far enough along for her to be moved, the cost of her medical care is going to (rise) astronomically. The cost of caring for her will depend on where she needs to be taken, in order to receive the best treatment. "
As a glimmer of hope, the record shows that there have been reported instances of DIPG cures - or at least of long term stabilization of the tumor, sometimes attributed to nontraditional treatments.
And hopeless parents have tried all kinds of remedies - most of them failing, most of them costly, in a desperate attempt to keep their child from dying.
For decades, Houston doctor Stanislaw Burzynski offered hope. He claims his "antineoplaston therapy"— which includes ingesting a sodium-saturated blood and urine based drug he created - can cure DIPG. There are testimonials from people claiming he cured them. His followers - cancer patients and survivors - through heart wrenching pleading and protests - got the FDA to back down when they tried to stop him from giving his patients his government un-approved treatments.
Burzynski claims his DIPG patients have a 30 percent survival rate and calls his product "Tomorrow's cancer treatment today."
But there are some who claimed to have paid him a small fortune and lost their child, and call him a fraud. The FDA ordered him to stop giving his drug to new patients. The National Cancer Institute says Burzynski, in 36 years of his treatments, has never published evidence that his drugs cured anyone.
The website www.caringbridge.org, offers a different kind of hope, listing 21 children who, through various methods, "survived" DIPG for longer than doctors predicted. The website however has not been updated in several years.
But the Reporter was able to confirm independently that while at least five children had passed away - or, as one poster said, were "healed in heaven," there were nevertheless some remarkable stories - dating from 2006 - to the latest updates in 2012, and some of which we were able to independently investigate that the children were still alive.
Annabelle was diagnosed with DIPG in 2005.
Radiation, a clinical trial in Bethesda, Maryland, with Dr. Katherine Warren, subcutaneous injections of Peg-Intron, a vasoconstrictor, a diet of whole foods, multivitamins, kinesiology, and prayer, were her treatment, according to her parents - and, intriguingly, a homeopathic remedy, found online, apparently developed by Indian doctors, Prasant and Pratip Banerji, to shrink or arrest the growth of DIPG tumors -- Ruta Graveolens 6c and Calcarea Phosphorica 3x.
The Reporter found information suggesting Annabelle was alive as recently as February 2014, which means she lived at least nine years since her diagnosis of DIPG.
Connor, diagnosed in 2003, at five weeks old, apparently did not have radiation or any treatments at all. His parents were told he would live only 30 days. As of September 2013, Connor was 10 years old.
Dasia was diagnosed in 2005, at age seven. As of December 2014, she was 16 and posting her tumor, while not gone, is "STILL STABLE."
John Robert was diagnosed in 2007, at 15.5 months old. He had chemotherapy and his tumor shrunk approximately 10mm, from 42.8mm to 31.8mm. In 2008, he was taken off chemo. As of February, 2015, he is nine and his tumor is still stable.
Kayla was diagnosed in 2006. Her treatments were radiation and chemotherapy, plus no sugar, all organic food, chiropractic care, low level laser treatments, foot baths, homeopathic medicine, and prayer. Her last treatment was on Dec. 21, 2007. On February 27, 2012 - as the Reporter learned from the website of the Perdido Bay United Methodist Church - "Kayla has lived most of her life with an inoperable tumor. She and her father (Shane) have almost worn out the roadways between Pensacola and St. Jude's Hospital, but she has done remarkably well, and her father attributes her sustaining health to the love and expertise of her caregivers and to the power of prayer.
"Shane called me today with the sound of hurt in his voice. It seems that Kayla is experiencing some progressive weakness in her left side, which is adversely affecting her mobility. Whether it is directly related to the tumor is difficult to say as they await further test results."
A few months later, in August 2012, a news report indicated that the Rev. Darren McClellan, lead pastor at Perdido Bay Methodist, took part in a beach front worship, and, after the band played," I'll Fly Away" rain suddenly began to pour down. Pastor McClellan gathered the family around Kayla, 10, and he laid his hands on Kayla and prayed. Then hundreds of other worshippers, many in shorts and flip-flops, jeans and T-shirts, put their hands on one another's shoulders in holy community, bowed their heads and joined in for Kayla's healing.
That was three years ago.
According to the church bulletin of March 22, 2015, Kayla is still struggling, but alive. She is listed in the bulletin under those who need special prayer this week.
Finally, there is the case of Leah.
Given six months to live three years ago, her parents, with nothing to lose, gave her medical marijuana via cannabis oil. Before the oil treatments, "Leah couldn't walk without falling, and her eyes crossed. Now, she is able to go to school without me, she can walk, and some days her eyes are not crossed," her mother, Beth said in Sept 2014. "Cannabis oil has given us our baby, and I thank God every day that, for whatever reason, He showed us mercy and gave us this incredible medicine."
Last week, her mother posted Leah's picture on Facebook, writing. "Look at these STRAIGHT eyes!" As Leah approaches her fifth birthday at the end of this month - a day that medical doctors said she would not see - her mother posted that Leah loves to eat ice cream for breakfast.
From certain death, to marijuana, to ice cream for breakfast.
Everything that is done in the world is done by hope.
For Analyse Gibas, the YouCaring web page says, "the prognosis is very poor," yet "her family is hoping and praying for a miracle."
"He tends his flock like a shepherd. He gathers the lambs in his arms and carries them close to his heart. He gently leads those that have young," says Isaiah 40:11.
And for those who would look through each other's eyes for an instant, and might choose to contribute a sum, large or small, for a miracle for a seven year old child of Niagara Falls, please visit www.youcaring.com and type in the name Analyse Gibas under the search option. The easy online instructions will guide the effort.
