WEST HAVEN — A couple who wrote a book about their young son’s high-profile battle with cancer — in hopes that treatment options expand — will return to the city Friday for a book-signing to be held at Duffy’s Tavern.
In “Mickey’s Fight,” — a fight the boy lost when he was 51/2 in 2016 — his parents, Mark and Rachel Macholl talk about the emotional toll. But they also address what they view as the ineffectiveness of current conventional treatments for childhood cancer and the need to allow parents the option of integrative care involving small doses of traditional treatments such as chemotherapy, with the addition of vitamins, oils and other natural, healing substances. The latter approach — used in many foreign countries with some success — is not legal in the United States, the Macholls said.
“Mickey’s Fight,” is currently the #1 trending Balboa Press book. The promotional book signing, called “Beers & Books,” will be held from 6 to 9 p.m. Friday at the tavern, 241 Campbell Ave.
Those who attend can bring a copy of the book or buy one on site. The book is available in hardcover for $35.95 and softcover for $17.99.
“It’s incredibly crazy,” Rachel Macholl said of current treatment options. “We want parents to know we can band together and get things changed.”
Mark Macholl said the “ultimate goal” would be to get laws changed and give parents more options for cancer treatment or any kind of serious illness.
The Macholls said they were forced to put Mickey through conventional treatments such as chemotherapy and radiation, or social services would take him and their other two sons away.
They believe he would still be alive today had they been able to treat him all the way through with integrative medicine.
The Macholls said radiation was insisted upon even when there were no more signs of cancer. When they showed the radiologist data saying that could lead to a cancer return, he looked at them as if they were crazy and wouldn’t budge. Soon when Mickey’s cancer returned, the pediatric oncologist told the Macholls that is probably from the radiation, they said.
In the end, when Mickey was given one week to live and couldn’t even walk, they found a doctor in Arizona who treats children through integrative medicine in a way that is permitted by law. The Macholls had to pay out of pocket and buy the vitamins and other substances such as essential oils themselves. Within three days, Mickey — unable to walk when he arrived - was breakdancing, they said.
“What we were doing in Arizona was working,” Rachel Macholl said. But tragically, as Mickey was on the upswing, he developed a random cellulitis infection around his g-tube and succumbed.
Mark and Rachel Macholl began dating in high school around senior year and after they married, moved from West Haven to Wake Forest, N.C. where they could buy a larger house and leave harsh winters behind.
But they still have strong ties to West Haven — their families remain — and city residents have always rallied around them during Mickey’s fight.
Duffy’s, their favorite restaurant and a former employer of Rachel, held a huge fundraiser for the Macholls at the time of Mickey’s devastating diagnosis of Stage 3 high-risk neuroblastoma some five years ago.
The disease initially was discovered as a malignant tumor the size of a softball attached to his adrenal gland, which was removed.
Mickey’s illness was discovered almost by accident when he slipped in the tub , then woke up the next morning and threw up. His parents brought him to the hospital thinking he might have ruptured his spleen.
Now, one online review of the book describes it as “real, raw, truthful, loving, faithful and so much more.” Another reviewer said they couldn’t put the book down.
While both parents contributed to the material, it is largely made up of the text from Facebook posts that Mark used to inform family, friends, the interested public during the journey. The book reads like a diary.
Mark Macholl said he took to Facebook, as he was looking for support from a “dad’s perspective.” There were plenty of support resources for moms, the Macholls said. The dad said sharing on Facebook and putting the book together were quite cathartic — as he has always enjoyed writing and it was a way to get his feelings out rather than fight them as can be the tendency with men.
“The hardest part is me feeling that as a dad I couldn’t protect my kid…I had to break my promise to my kid,” Mark Macholl said, adding it was also difficult to have to depend on other people.
The Macholls have two other sons, Trey, 12 and Tyce, 9.
At first their situation tested the Macholls’ faith in God, but by the end that faith was even stronger.
That faith is only fueled by the afterlife Mickey described to them as he was dying and the signs they have received of his continued presence. Mark Macholl will talk about the latter in his next book, which will serve as a guide to grief.
In “Mickey’s Fight,” the parents write about how two days before passing, Mickey said he had a glimpse of heaven and said he saw his “brother.” It turns out the Macholls had experienced a miscarriage earlier in their marriage, but had never told their sons. Then Mickey began naming kids they had seen during treatments at various hospitals, although he didn’t know their names then.
“When Mickey was passing there were so many affirmations that heaven exists,” Mark Macholl said.
In terms of Mickey’s continued presence, Mark Macholl tells the story in “Mickey’s Fight,” of how a couple of days after his son’s passing he ran out to get the family dinner and “lost it,” once he was alone. He went in to get the food and when he came out there was a child’s handprint the size and shape of Mickey’s hand on the inside of the driver’s side window. Mark Macholl said a song that always made him think of Mickey came on and he could feel the presence of another person. When he went to put his arm around the seat to drive, Mark Macholl felt “little fingers,” on his arm, he said.
The couple’s ultimate goal is to establish a “Mickey’s Fight Foundation,” change laws and eventually have enough money in it to open a wellness center offering integrative medicine through a doctor. They even dream of buying a condo near the center and allowing families to stay there for free.
A portion of the proceeds from the book will be passed on to Ray Guarino, a fellow Westie currently battling cancer.
The Macholls say they keep Mickey in their everyday lives, but “in a happy way.”
One online review of the book says: “This is a heart wrenching true story…Not only were they dealing with the pathophysiological changes in their son Mickey’s body from Neuroblastoma, but they also had to battle many roadblocks with the healthcare system.”