Potomac two-year-old resilient despite battle against leukemia

POTOMAC – "It really puts things in perspective and makes you realize what's important," said Jodi Hausmann, mother of four whose daughter Everly was diagnosed with Acute Lymphoblastic Leukemia this past July. "We've learned to count our blessings every day. And just being, maybe not thankful for every situation, but trying to find small moments of joy in the situation."

Last week the Hausmanns returned to Montana Children's Hospital in Kalispell for Everly's second round of intensive chemotherapy and steroid treatments. While her leukemic cells dropped from 90 percent to one percent following the first month of intensive treatment, they are hoping this second phase of treatment will kill the remaining cancer cells in her body. Even though the treatment path is well known and the treatment success rate is 80-95 percent, the road ahead for the Hausmanns will not be easy. They appreciate all the support they have received from family, the Blackfoot community and people they don't even know.

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Just a couple days before Everly Hausmann's two-year well child visit on July 21 she spiked a temperature that bordered 104-105 degrees. They were advised to bring her in for her normal visit at which point her fever was up to 106.

"They were obviously pretty concerned but thought she probably had some sort of bacterial or viral infection," said Jodi. They returned home.

By Wednesday, July 24, Everly's fever still had not dropped. She was taken to the Emergency Room where they ran blood tests.

"The blood work showed that basically her immune system was nonexistent," said Jodi. "She had no white blood cells, no platelets and her hemoglobin was extremely low, about half of what a normal child has or even less."

Everly was immediately life flighted to Montana Children's Hospital in Kalispell. The new children's pediatric unit at Montana Children's Hospital opened two weeks prior to Everly's diagnosis. It is the only hospital in Montana that services families with either a cancer, oncology or hematology diagnosis. In the past, families have always had to go to Washington, Colorado or Utah for treatment.

"There was that hope that maybe this is just something that can be easily solved," said Jodi. "But then you sort of know in the back of your mind, there is a high percentage chance that there's going to be an official diagnosis coming."

While fever is one of the last symptoms usually observed for leukemia, Everly didn't have any of the other typical symptoms like bruising or fatigue. However, Everly's bone marrow biopsy showed that she was 90 percent full of leukemic cells. On July 26 she was officially diagnosed with Pre-B Acute Lymphoblastic Leukemia.

Everly started the first phase of treatment. She received 30 days of high doses of chemotherapy and a month of steroids. The steroids made Everly angry and emotional and she was extremely hungry all the time. She gained 15 pounds in two weeks.

Because the treatment suppressed her immune system, Everly developed a bacterial and fungal leg infection from a little scratch on her leg that went into sepsis. Her doctors in Kalispell recommended she be taken to Colorado Children's Hospital in Denver because their pediatric infectious disease specialists would be better able to treat her leg infection.

Jodi flew with Everly to Denver where they spent three weeks getting the infection under control.

While the Hausmanns had the option to transfer Everly to one of the larger facilities, Jodi said the second opinion in Denver confirmed that the doctors in Kalispell were doing everything possible for Everly. They were very pleased with the care they were receiving and felt blessed to be so close to home.

Following her first phase of treatment, Everly's number of leukemic cells was reduced to only one percent. This allowed her to proceed with standard treatment.

"After getting that initial report that her bone marrow was at that one percent, it was a major, we felt like, step in the right direction," said Jodi.

The Hausmanns returned home to Potomac in November after 80 days of being in the hospital. They were able to stay at home for four to five days at a time before returning to Kalispell for three days of treatment.

"It really felt fantastic to be home. Having a sense of normalcy was extremely morale lifting for all of us," said Jodi.

When Everly was diagnosed, Jodi was 37 weeks pregnant with their fourth child. Ellivia was delivered in Kalispell and this was her first time home. Jodi said she started sleeping through the night almost immediately.

"I think she just instinctively knew we needed her to be a trooper and go with the flow," said Jodi. "She has definitely filled that to the letter, so that's been wonderful."

Everly's four-year-old twin siblings Harley and Holland had been bouncing between their grandparents Nancy and Joel Ockunzzi and Ernie and Helen Hausmann.

Monday, Dec. 2 Everly started another intense phase of treatment at Montana Children's Hospital. She is getting another round of steroids and more intense chemotherapy. This is designed to eliminate the remaining cancer cells that were able to evade the first treatment.

"Everly and I think a lot of children with this diagnosis of cancer in general, are very resilient," said Jodi. "You can't believe how many times and how many things that these kiddos go through and then they're still wanting to play – smiling, laughing, they're on steroids and one minute they're grumpy and crying and they just still [just want to play]. They just want to be a kid."

Jodi said once Everly completes her six months of intensive treatments, she will have monthly chemotherapy treatments for the next two-and-a-half years. In additional to the conventional treatment, the Hausmanns have incorporated alternative therapies such as vitamins, supplements and sauna treatments when their oncologist has felt comfortable with them.

If at any point before the five-year mark they find questionable blood cells, another bone marrow biopsy is needed to determine if a bone marrow transplant is necessary. Siblings have a 25 – 100 percent probability of being a good match. Doctors are confident a child will have an event-free survival 10 years post-diagnosis.

Jodi said because they had a new baby after Everly's diagnosis, they contacted a Cord Bank Registry in California that gifted them with a stem cell blood bank for the baby's umbilical cord. If Everly needed a transplant and the baby was a match, they could use umbilical stem cells, which Jodi said are more potent than free-floating stem cells.

One of the big challenges for the Hausmanns has been learning to go with the flow. Jodi prefers things to be in order, very specific and laid out. The twins have had to adjust to being away from home without their parents with different routines and expectations.

"We've really just tried to be very flexible, tried to keep things as normal as possible for all the children, and just worked with what we have on any given day," said Jodi.

Another challenge Jodi and her husband Karl struggle with is the unknown for Everly's future regarding her cancer and the long-term side effects of chemotherapy.

"I think as parents just knowing that you want to provide the best world that you can for your child and then knowing that you can't do anything even though you want to make it better," said Jodi.

In her research, Jodi was shocked to learn that only four percent of federal funding goes to fund pediatric cancer research.

"When you're talking about somebody who has a life expectancy, hopefully for 70 to 80 more years if they're diagnosed at age two like Everly, you really want to put the funding there," said Jodi. "This person can be affecting the world for the greater good, for the better and changing our world for the next 80 years."

Jodi also didn't realize that pediatric cancer survivors have potentially a life-long process of battling diseases such as glaucoma, diabetes, osteoporosis and heart failure as well as fertility complications and obesity as a result of the chemotherapy. The same four chemotherapy treatments developed 50 years ago are the same treatments used today.

"We need more research. We need more funding," said Jodi. "That's one thing that we've really tried to and are going to continue to try and use Everly's diagnosis for is to raise awareness. We want people to understand that we need to be supporting our youth in this process."

The Hausmanns have not been able to work since Everly's diagnosis due to her treatment schedule. This adds to the financial burden of medical and hospital bills.

Jodi worked at Community Medical Center as a Health Unit Coordinator in labor and delivery and was the preschool teacher at Potomac School in 2018-2019. Her maternity leave at CMC morphed into family leave. Because Everly is so immune compromised, Jodi was not able to be around other children so she could not teach preschool again this year.

"That was a big disappointment to myself, and I think the school as well, just because we've worked so hard last year to get the preschool up and running. We were very hopeful this year for bigger and better options as we worked out the kinks last year," said Jodi. "I'm hopeful down the road I might be able to restart that."

Karl worked in real estate. Even though he tried to work away from home, he found it too difficult to be available, return phone calls and be available for meetings so he resigned.

"We are both in the process of trying to find work and figure out how that works into Everly's diagnosis," said Jodi.

The Hausmanns are continually grateful for the support they have received, from their friends and family, the Blackfoot Valley community and those that have been touched by Everly's story. Jodi continues to post updates on Facebook. You can follow Everly's story by searching for #EverlyStrong.

How you can help

• Purchase an "Everly Strong" bracelet at area businesses including: Cullys and Potomac School in Potomac and The Cow at Clearwater Junction and soon they will be available at Cory's Valley Market

• Donate to the Everly Strong Fundraiser on Facebook

• Donate via Paypal at https://www.paypal.me/jodioh

• Donate through Go Fund Me at https://www.gofundme.com/f/help-the-hausmann039s-and-baby-everly-fight-leukemia

• Write a check to the Hausmanns and mail to The Hausmann Family, c/o Nancy Ockunzzi, PO Box 727, Donnelly, ID 83615.

Acute Lymphoblastic Leukemia Fast Facts

• Acute lymphoblastic leukemia is the most common type of childhood leukemia.

• It is a cancer of the bone marrow and blood. It affects the lymphoid stem cells. The cancer cells multiply and infect the red and white blood cells and platelets making it very difficult for a child to fend off infections.

• If the first month of intensive treatment is effective, the minimal residual disease drops to one percent.

• The five-year survival rate is around 90 percent

• Some children may need a stem cell transplant. This requires finding a bone morrow donor. Siblings have a good chance of being a match.