That is what Heather, Joshua and Luke Ozga agree they are going through as Heather’s 9-year-old son, Luke, is stricken with a rare and virulent cancer.
“A war to save Luke’s life,” said Heather Ozga of Chandler.
But the family has a powerful ally in Ahwatukee-based Ahwatukee-based nonprofit Armer Foundation for Children, which is helping Ozga through a financial morass.
While donations can be made elsewhere online, Armer Foundation gives all donated money to the family. There are no processing fees, and donations are tax-deductible.
In addition to the hospital stays, medications and procedures there are so many other costs the family faces including the loss of income for Heather Ozga who left her job at MD Anderson Cancer Center when her son was initially diagnosed and the upcoming stay in Houston.
Armer Foundation co-founder and president Jennifer Armer said a blood drive and fundraiser is slated for 11 a.m.-3 p.m. Sunday Aug. 22 at UFC Gym, 3830 E. Ray Road, Chandler and called for raffle donations.
“I am in need of raffle baskets to help raise funds for Luke to get to the Car-T therapy trial in Houston. And Heather is going to need funds to live off as she’ll most likely have to rent an apartment or some type of housing,” explained Armer. Armer also is looking for raffle baskets to raise money to support a trib Heather and Luke will be making later this month to Houston, Texas, where he will be undergoing an experimental treatment.
The Ozga family didn’t ask to be in this devastating battle against a virulent and rare form of lymphoma attacking Luke since December 2019, but they have faced it bravely.
He appeared to have overcome that initial attack, but relapsed a year later. A bone marrow donation from his elder brother Josh appeared to be successful and the family was ecstatic.
In early July, Luke Ozga marked the 100th day following his bone marrow transplant. The family’s small celebration featured two cakes, one with creamy white icing in which the happy youngster chose to plant his face to indicate his happiness.
Less than two weeks later, on the 110th post-transplant day, what the family hoped was a routine examination to assure them all was going well brought devastating news: they were informed the bone marrow transplant that had been such agony for both brothers had failed.
“They said we didn’t have very many options left,” a tearful Heather Ozga said.
Sitting beside her in a social media post, as he did again in follow-up videos, was 12-year old Joshua Ozga, the elder brother who had just entered 7th grade at San Tan Junior High School and who has proven himself to be preternaturally knowledgeable on the disease and various treatments, including chemotherapy.
At that 110th day examination, the family learned Luke had trace amounts of cancer in his bone marrow.
“I almost hit the floor,” she said.
“Hearing your child has cancer is a parent’s worst nightmare; hearing he needs a bone marrow transplant was heart-wrenching but we got through it, and we thought it was a complete success,” explained Ozga.
“If you looked at him and saw him, he’s so positive, so smiley, he looked great, he felt great. So when we went in and I heard this and said, ‘Okay, what next?’ and they said ‘We’re running out of options,’ that was beyond devastating.”
One option mentioned was a clinical trial in Texas at the Texas Children’s Hospital.
The family and their ever-enlarging support group of friends and even strangers prayed he would be accepted.
Last month, they learned that the lifeline of hope remained as Luke was approved into the program, this despite the 13-year-old age minimum.
“Luke will be only the third patient with T-cell leukemia to receive this treatment in the U.S.,” she said. “He has lymphoblastic lymphoma, not leukemia, but we do, however, follow the leukemia protocol because due to the rareness of his cancer, they don’t have a protocol for lymphoblastic lymphoma.”
TCH was the first to offer cell therapy in pediatrics in 2012. The clinical trial to which Luke will enter sometime in August is for an immunotherapy known as chimeric antigen receptor (CAR) T-cell therapy for children with advanced acute lymphoblastic leukemia.
This clinical trial is all about life or death,” said Heather. “We had the conversation with both the boys, and Luke just cried and cried and cried.”
“It’s his last chance,” added Joshua.
Heather Ozga paused a moment to wipe away tears.
“And it’s all about money, too,” injected Joshua.
“Yeah it is, but everything is,” his mother replied stoically.
The cost of battling cancer is astronomical, and can easily add to the daily stress. When Luke started chemo, the family learned one of the two medications that were to be taken concurrently during this period was not covered by insurance.
“For 60 pills, it was $7,748,” she revealed. “We obviously need a lot of help, financially.”
It is still undecided if it will be necessary for 12-year-old Josh to accompany the family to Texas Children’s Hospital in late August.
“We found out that more than likely Josh won’t need to go to Texas as they will be able to take blood here at PCH and send it there,” said Heather Ozga. “Only if it’s not good enough, or contaminated, would Josh need to go.”
Ozga anticipates the Houston trial and hospitalization would require a stay of up to six weeks.
She said it appears a different donor will be used for the next blood marrow transplant that will occur after the CAR T clinical trial. The family is urging residents to research and then enter the Be The Match database to help locate a bone marrow donor for this procedure.
Ozga acknowledges many medical terms are hard for the average citizen to grasp – among them the difference between leukemia and lymphomas.
But when dealing with them month after month, year after year, it becomes a second language, one even Josh has mastered.
“I’ve had to learn more about cancer in the past year and a half than I’d ever want. The meds alone are mind-blowing, along with their side effects,” she said. “The easiest way to describe the difference between leukemia and lymphomas is that lymphomas are usually masses.”
“When Luke was first diagnosed in December of 2019 he had a huge tumor on the front of his heart that had filled his lungs with tumor fluid and had collapsed his lungs so he literally couldn’t breathe. He was breathing 41 to 48 breaths per minute,” Ozga continued.
“It was awful and it had spread to his lymph nodes in his belly and his kidneys. That’s why his cancer is more rare and harder to get rid of because it’s aggressive and grows fast.”
While attention is focused on doing everything possible to save her son’s life, Ozga is understandably concerned about the ever-escalating cost of cancer.
“I’m having insomnia and anxiety attacks,” she admitted. “Cancer is so devastating and so expensive. People shouldn’t look at the amount of money donated on the Armer Foundation or GoFundMe pages because I promise you, it’s gone in the blink of an eye.”
Recent figures on fighting cancer indicate one round of chemo can range from $10,000 to $100,000 or more. Luke has had numerous rounds.
Bone marrow transplants are one of the most expensive procedures, with studies showing it can be as high as $200,000 per transplant. Luke has had one and faces two more.
The upcoming clinical trial will add considerably to the costs so far.
As with the chemo medicine, some insurance plans don’t cover those expenses as they are considered ‘experimental’. Such trials can cost $41,000.
As thrilled as she was to discover last week that her youngest son has been approved for the clinical trial in Houston, she is searching for ways to get there, stay there and be strong for her son as he goes through it all in a strange place.
“I’m trying to figure out what sort of costs I’ll have with our trip, but haven’t been able to find out as of yet. I don’t know if food or gas is covered, if our flights or a rental car will be. I’m trying to get answers now so I’m prepared,” she said.
“I’m feeling like we need to drive to be able to bring all the necessary items we will need for our extended stay but concerns about my vehicle’s age and mileage worries me so I’m still trying to work all the details out.”
Even as a single mother, she said she knows she’s not alone. Besides her parents and sister and friends - some of whom she’s never even met, she said
her faith makes it possible to keep going every day.
“Josh and I go to our church every night and pray at the beautiful cross asking our Father to save Luke’s life,” she said. “I was born and raised Catholic and I attend The Grove. I sleep with my rosary, I pray a million times a day. God is so much a part of our lives.”
Fundraising is serious business for the family as they face the ensuing months of travel, treatments, and more.
“We need all the help we can get to help save my son’s life,” she admitted candidly. “Anything helps at this point.”
To help the Ozga family, make a tax-deductible donation at ArmerFoundation.org.