Tallia Davis had just started kindergarten when her doctor referred her to UCSF for what he thought was rheumatoid arthritis in her leg. Scans and a biopsy revealed something much more serious: Ewing's sarcoma, an aggressive type of bone cancer that's extremely rare in children.
Doctors initially told Tallia's family that they might need to amputate her leg to remove the cancer. But radiation oncologist Dr. Daphne Haas-Kogan suggested trying intensity modulated radiation therapy, or IMRT. IMRT allows for higher, more effective doses of radiation to be delivered to the tumor while minimizing exposure to surrounding healthy tissue.
Treatment was successful and Tallia was able to avoid an amputation. She's regained the strength in her leg and is now keeping up with her twin sister, Lexi, and little sister, Kenzie.
Tallia's mother, Jacy, describes their family's experience with cancer treatment and recovery.
How did you find out that Tallia had cancer?
Talli started having pain in the beginning of October 2011. Her primary care physician first thought that she had toxic synovitis, which is a cold that moved into her hip. When the pain didn't go away for a month, we were admitted to USCF where she had an X-ray that showed extra bone growth. The doctors thought it was either an infection or cancer. She then had a biopsy that showed she had Ewing's.
When Tallia was diagnosed you also had a 6-month-old baby, not to mention Tallia's twin sister, Lexi, to care for. How did you do it?
It was from believing that this situation was out of my control and that I had to lean on faith and accept love and help from others.
Being a mom is about love and I just had to make sure that I gave each of my children absolute love, even if I couldn't take Talli's pain away or if I had to be away from my other two for weeks at a time. Those girls always had someone loving and caring for them — we had an amazing support system.
It was a team effort, but it was also my relationship with Christ that gave me the strength to be a loving mother, even on the off days.
Describe your experience at UCSF.
UCSF became our second home. We became very close to our nurses and developed so much respect for our doctors. The different staff members were amazing in each of their fields.
I felt we were in the best place with the best care! So I would say our experience — aside from why we were there — was quite wonderful.
Tell us about Tallia's treatment.
She had 17 rounds of chemotherapy and 31 days of radiation.
The longest we were in the hospital was eight days. Most of her chemo rounds were five days of inpatient care. We would have chemo rounds every two weeks, which ended up being more like two to three weeks because we always had to wait for her blood counts to climb back up before pushing them down again. Treatment lasted 11 months.
How did you handle being away from home for so long?
By fully enjoying our time when we were home, as best we could. We surrounded ourselves with family and took walks and enjoyed the outdoors since we were confined to a room most of the time. It just became a normal part of our routine.
In the beginning, I didn't handle it very well. We had lots of mommy and daddy and Talli and Lexi "breakdowns" — Kenzie was too small to realize what was happening — but that is all part of these sorts of situations.
How did Tallia cope with life in the hospital and being away from her sisters?
In the beginning, not so well. But then as time went by, it just became a part of her. I think she enjoyed having mama and daddy all to herself.
She has a special bond with both her sisters, and I feel like that was a big reason why she pulled through with such positivity. She strived to keep up with Lex and be a great big sister to Kenz. It was really neat watching their relationship through this! They just love each other so much and are so protective of one another!
What inspired you to start a blog?
Many people were reaching out to us through Facebook, so I decided I wanted a webpage they could go to directly, a place where I could share everything for those who wanted to share our journey. I had read other parents' stories and I felt like it was such a good way to help cope and also not to feel alone. Even if there was nothing anyone could do, it was just nice to know they cared and were following our story.
How did Tallia's cancer change your family?
It's a somewhat complicated answer. As time passes, it affects us differently from how it did in the beginning. I would say that the year she was diagnosed and went through treatment affected us in more positive ways than negative. It was the hardest thing we had yet gone through, both personally and as a family, but we stayed connected and strong.
We have always said Talli has an old soul, an amazing energy about her, and watching that grow even further and seeing how incredibly positive she stayed was inspiring to everyone around her. It opened all of our eyes to the other families out there that are fighting the same journey or similar journeys of having a sick child. I would say the biggest change was in all of our hearts.
As time goes by, it has also changed us in some negative ways. Each of us have experienced major post-traumatic stress disorder. Besides that first week of her actually being diagnosed, I had never experienced the anxiety that I do these days — something that I pray and believe time will heal.
What advice would you give to other parents in a similar situation?
I don't feel there is any perfect advice. I think that all we can do is love our child going through an illness. Stay positive and understanding and always remind them that we understand that they are the one physically suffering, but that it's a family effort and we will do everything to protect and love them. The rest is in God's hands.
What's the biggest lesson you learned from this experience?
That life can be beyond difficult at times but that you can still have joy and hope!
Visit Tallia's website, rallyfortalli.com, for more about her story.