For the first time in two years, Finnley Grace Foster will spend the holidays at home with family.
The 4-year-old daughter of Katie Whitmore and Pat Foster has been battling serious infections and illnesses for a majority of her life due to a compromised immune system. But thanks to the generosity of those registered with the national bone marrow donor program, Be The Match, the family's turbulent time together so far may be easing up.
"We're kind of getting to the point to where we're kind of like we have to trust Finnley, we have to trust that what we did is in fact working and we have to let her go," said Whitmore.
Finnley was born in Havre and now lives in Great Falls.
This coming January marks one year since Finnley received her second bone marrow transplant. Whitmore explained that the one-year mark means that transplant recipients, like her daughter, begin to have restrictions lifted and can participate in more public outings. Whitmore is even beginning to consider what schooling could look like for Finnley as she continues therapy.
When Megan Caffyn of Fairfield began following Finnley's story on the Facebook page, Prayers for Finnley Grace, she felt compelled to register with Be The Match in hopes she would be a match for Finnley.
In July of 2017 Caffyn volunteered to join the registry by completing a medical history and a simple cheek swab to sample her DNA.
"I did it for Finnley knowing that my chances of being her match were probably very slim," said Caffyn.
According to Whitmore, she received numerous stories of supporters that registered with Be The Match like Caffyn, but most of them would opt out of the registry list if they weren't compatible for Finnley. Caffyn was one of the few who kept their name on the donor list.
After two years of being on the list with Be The Match, Caffyn received a call just a few weeks ago from Be The Match that surprised her, she was a match for someone else. Even though she wasn't a match for Finnley she jumped at the chance to possibly save someone else's life.
"I'm just very happy that I am a match and I'm able to do this for someone because the gal that needs this is about the age of my parents and if my parents needed it, I would really hope that somebody would be there for them," said Caffyn.
Now Caffyn is in a waiting period while Be The Match runs tests on her submitted blood samples and analyzes her extended medical history. If all goes well, she will be one step closer to having her bone marrow harvested for someone she hasn't even met.
Even though Caffyn wasn't a match for Finnley, her generosity continues to touch Whitmore's heart. According to Whitmore, the two grew up together in Fairfield and were friends. They played sports together and regularly hung out in similar friend groups. The two eventually drifted apart following their high school graduations, but would see each other on occasion in Fairfield.
Caffyn regularly donates blood, but she never thought she would take it a step further, after hearing Finnley's story she felt like she had to do it.
"It just hit so hard that someone I knew was experiencing something so heavy with a child," said Caffyn. "Once I had my own kids I was like I don't know what I would do if I was in her shoes, it would be so difficult."
Whitmore never imagined that Caffyn would come back into her life in such a meaningful way.
"I just said that you will always have a huge piece of my heart, and Finnley's," said Whitemore. "The fact that she did that for my daughter and has been chosen and is doing it is just incredible."
Whitmore herself has even registered with Be The Match.
"I did the swab too so I'm in the database," said Whitmore. "It would be a dream to get that phone call just knowing what happened with my daughter."
The last few years have been a difficult journey for Finnley, who has remained resilient despite all that has been thrown at her.
For the first few months of her life everything seemed normal until she hit the four-month mark. Finnley was projectile vomiting frequently and continuing to lose weight. As time progressed her symptoms became more concerning. She developed horrible congestion and an increased buildup of mucus around her eyes and nose. Finnley was eventually referred to a local pediatrician.
The pediatrician ran extensive blood work and discovered that Finnley's white blood cell count was through the roof so it seemed likely that she had childhood leukemia. The blood work also revealed E. coli in her blood. Finnley was admitted to Benefis for 14 days with IV antibiotics. This began the first of many extended stays at a hospital.
During this first stay, doctors discovered that Finnley had a stool virus and two upper respiratory viruses at the same time, leading them to look into her immune system. In June 2015, when Finnley was about six months old, Whitmore was flown to Seattle Children's Hospital to meet with a specialist there.
"We found out that her T cells and B cells were not working correctly, she was producing them they just weren't doing their job," said Whitmore.
They sent the family back home, and told Whitmore to keep an eye on her. Finnley was on two medications and had routine blood work done on a monthly basis. She wasn't allowed to be at daycare, and wasn't able to go out in public.
Despite all of that, Finnley continued to hit all of her milestones like talking and walking. They traveled to Seattle every six months for check ups. Everything seemed to be going well, until Finnley was about a year-and-a-half old when doctors discovered that she had a new infection.
Finnley had developed Mycobacterium Avium Complex, or a MAC infection, that is derived from birds. The infection had spread to her stomach, liver and spleen.
"We breathe it in the air every day, but if you don't have an immune system you can't fight it off," explained Whitmore.
Finnley was put on five of the highest grade tuberculosis medications because doctors fight MAC infections similarly to if you have tuberculosis or HIV. Finnley stayed on those medications for three months. During this hospital stay, doctors on the transplant board determined that Finnley needed a bone marrow transplant because chemotherapy was not an option to fight the infection. She had her first transplant on Oct. 3, 2017, her donor was a perfect 12 out of 12 match.
"Everything was going great, the transplant worked, she was sick of course, but running all over the halls still in the hospital," said Whitmore. Finnley was discharged from the hospital in November 2017. They stayed at the Ronald McDonald house for two weeks when she developed pneumatosis, a series of pockets of air in the stomach that can leak into the bloodstream which can be very serious if not treated promptly.
At the time, Finnley was on a cocktail of medications following her transplant and was instructed that she couldn't eat for two weeks. Finnley was put on a total parenteral nutrition feeding method, also known as TPN, that provides most of the nutrients the body needs. Finnley ended up staying on the TPN because she couldn't clear the pneumatosis.
Then one morning Finnley woke up very weak and was virtually unable to use her right arm or leg. The rapid response team put her through a CT scan and an MRI. The doctors found no blood clots or sign of stroke, but they did find some swelling towards the back of her brain that was related to drug toxicity.
According to Whitmore, Finnley's drug toxicity levels sky rocketed due to the unfortunate mixture of her anti-rejection drugs for her transplant with the fasting period for the pneumatosis. She explained that if patients aren't eating anything by mouth that drug levels can become elevated. Finnley's level was supposed to be between 8 and 11, but she her levels had shot to 26.
Finnley began to recover and regained some strength back. Then two short weeks later Finnley was unable to sit up on her own and her speech was becoming slurred. Doctors ran more tests and scans and discovered Finnley had lesions on her brain, but she was clinically fine.
But everything took a turn on Dec. 22. Whitmore received a call from a friend that was spending time with Finnley who said she had developed a fever which resulted in an automatic 48 hour hospital stay.
"I woke up the next morning and went in to the hospital at 8 a.m. and she was still sleeping, which was kind of odd for her because she was normally awake at rounds," said Whitmore. "I tried waking her up and she was not very responsive, she wouldn't wake up to me or anything."
Finnley was septic and had an extreme infection on top of everything else. Doctors told Whitmore to let her sleep. Things continued downhill and Finnley was in a coma for eight days.
"I haven't seen her walk since December of 2015," said Whitmore fighting back tears. "I didn't hear her voice again until January 21, 2018."
From there, Finnley continued to go to therapy to regain her strength. She continued to develop viruses and other issues. Finnley received STEM cells from an anonymous person, which seemed to clear everything up.
Then in March, Finnley tested positive with a MAC infection, again.
She was eventually discharged from the hospital in April 2018, and lived in the Ronald McDonald House from April 2018 to January 2019. She had multiple doctors appointments every day. During the Fall of 2018, the results from Finnley's blood work came back with bad results, her first bone marrow transplant had failed.
Finnley had her second bone marrow transplant in January 2019. The transplant happened to be from the same donor who was able to donate enough cells to be frozen for later use if necessary.
"I never ever thought I would be in the positions of someone else needing to save my daughter's life," said Whitmore. "Just knowing that just a swab of your cheeks puts you in a database that can save someone else's life it's overwhelming, it leaves me speechless that he saved her life twice.
Following the transplant Finnley was treated with five different types of chemo at very high doses. The side effects from the chemo didn't really start to settle in until about three weeks in.
"She slept a lot but we were in the hospital and we had the best care and attention, she did really good," said Whitmore. "Then in February, it was our last night in the hospital, we were set to discharge the next day and she ended up having seizures that night."
Finnley continued to have frequent seizures until this April, and Finnley was finally able to come home in late May.
"We made it home and ever since she's been thriving," said Whitmore with a smile.
Since then, Finnley has only had to be admitted to the Seattle Children's Hospital once due to a virus. She was hospitalized for three weeks while she fought it off. Now, Finnley is seen for checkups at the pediatric floor at Benefis. Her speech is back again and she's able to speak in sentences. She goes to speech therapy, occupational therapy and physical therapy weekly.
"Last time we checked her blood she is 100% donor, so that's excellent almost a year later and her T cells are fully functioning," said Whitmore. "Of course my anxiety is extremely high because of everything we've been through but it's very encouraging knowing that she's doing it."
Finnley will travel back to Seattle this February for her for her year appointments, and if all is well they can beginning dropping some of her medications. According to Whitmore, Finnley is on 14 medications that are taken twice daily.
Whitmore is excited to finally spend the holidays at home with her family for the first time in two years. She is also looking forward to the future, something she hasn't been able to do for a quite some time.
"I can actually start looking towards these goals again, they kind of went on the backburner for a while," said Whitmore. "I think as parents we paint a picture of what our life is going to be like with our child, and I've painted that picture and that picture does not exist anymore. So now, I'm painting another picture."