Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
Wednesday, May 20, 2009
Hodger On The Run
This story is very saddening to me and exemplifies the fear that exists in people regarding treatment of cancer, specifically in this case Hodgkin's lymphoma.
My case of my resistant Hodgkin's lymphoma is rare. The cure rate for the disease is 90%. Seventy-five percent of the time Hodgkin's is cured with a simple round of standard ABVD.
Any diagnosis of cancer is scary and daunting.
Please read how it has affected one family in The United States: http://www.msnbc.msn.com/id/30824587/?GT1=43001
I have also copied the text below for your perusal:
NEW ULM, Minn. - The man authorities believe could be with a Minnesota teenager who ran away to avoid chemotherapy did the same thing more than a decade ago in Massachusetts.
Officials believe Billy Joe Best could be traveling with 13-year-old Daniel Hauser and his mother. The Hausers allegedly fled New Ulm, Minn., after a court-ordered medical exam showed his Hodgkin’s lymphoma had worsened.
In 1994, 16-year-old Best ran away to avoid having more chemotherapy to fight his Hodgkin’s disease. He returned after three weeks in Houston when his parents promised they would not force him to have the treatments.
Best has claimed his cancer was cured by natural remedies. His parents, Sue and Bill Best of East Bridgewater, did not immediately return a phone message.
Daniel Hauser and his mother, Colleen Hauser, apparently left their southern Minnesota home sometime after a doctor’s appointment and court-ordered X-ray on Monday showed his tumor had grown.
Brown County District Judge John Rodenberg, who had ruled last week that Daniel’s parents were medically neglecting him, issued an arrest warrant Tuesday for Colleen Hauser and ruled her in contempt of court. Rodenberg also ordered that Daniel be placed in foster care and immediately evaluated by a cancer specialist for treatment.
The family belongs to a religious group that believes in “natural” healing methods. Daniel has testified he believed chemotherapy would kill him and told the judge that if anyone tried to force him to take it, “I’d fight it. I’d punch them and I’d kick them.”
The boy’s father, Anthony Hauser, testified he didn’t know where his wife and son were but had made no attempt to find them. He testified he last saw his son Monday morning, and he saw his wife only briefly that evening when she said she was leaving “for a time.”
Officials distributed the arrest warrant nationwide. Brown County Sheriff Rich Hoffman said Tuesday that investigators were following some leads locally, but declined to elaborate. A crime alert said the Hausers might be with Susan Daya, also known as Susan Hamwi, a California attorney who accompanied them to a medical appointment Monday, or with a man named Billy Joe Best.
Best appeared at a news conference held by the family in early May to say he supported the Hausers. Best, who said he was from Boston, told The Journal of New Ulm then that he had also been diagnosed with Hodgkins lymphoma as a teenager but was cured by natural remedies.
In an interview Wednesday at his family farm in Sleepy Eye, Anthony Hauser said he hadn’t heard from his wife or Daniel since they left. He said he has some ideas where they might have gone, and he’s shared them with authorities.
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He said he thinks his wife just got scared when they got the results of the X-ray on Monday, and thought Brown County authorities would use it to try to get custody of Daniel.
“It’s just my opinion, but I think she figured that because of that X-ray she feared they were going to take him,” he said.
He said he doesn’t oppose chemotherapy “if it’s a necessary thing,” but thinks doctors use it too much.
He wonders why Brown County authorities got involved.
“I don’t know why they started this situation in the first place,” he said. “Why does someone believe they have the right over your child?”
Daniel’s Hodgkin’s lymphoma, diagnosed in January, is considered highly curable with chemotherapy and radiation, but the boy quit chemo after a single treatment.
The judge has said Daniel, who has a learning disability and cannot read, did not understand the risks and benefits of chemotherapy and didn’t believe he was ill.
The Hausers are Roman Catholic and also believe in the “do no harm” philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods advocated by some American Indians. Colleen Hauser testified earlier that she had been treating his cancer with herbal supplements, vitamins, ionized water and other natural alternatives.
The founder of Nemenhah, Philip Cloudpiler Landis, said it was a bad idea for Colleen Hauser to flee with her son. “You don’t solve anything by disregarding the order of the judge,” Landis said.
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The family’s doctor, James Joyce, testified by telephone that he examined Daniel on Monday, and that an X-ray showed his tumor had grown to the size it was when he was first diagnosed.
“He had basically gotten back all the trouble he had in January,” the doctor said.
Joyce testified that he offered to make appointments for Daniel with oncologists, but the Hausers declined, then left in a rush with Daya, the California lawyer. “Under Susan Daya’s urging, they indicated they had other places to go,” Joyce said.
Daya did not immediately respond to a call Tuesday from The Associated Press.
Minnesota statutes require parents to provide necessary medical care for a child, Rodenberg wrote. The statutes say alternative and complementary health care methods aren’t enough. END ARTICLE
This deeply saddens and disturbs me. I pray that this boys mother makes the right decision in the best interest of her son.
Being a person with Hodgkin's who believes wholly in the benefits of alternatives, I recognize the difficulty of having to accept traditional care.
However, certain situations do require the use of traditional care and in my opinion, the refusal or inability to rovide proven life saving treatment to a child in your care is neglect.
This is certainly not a situation where there will be a winner or loser. We can only hope and pray that this young man receives the care he needs.
To give a word to ease minds, not knowing the specific type of Hodgkin's he suffers with, it is likely a small delay in chemotherapy will not allow the disease to progress to a point that is untreatable. When the family returns, he will likely still have a significant chance of survival.