Disclaimer :: The Ronald McDonald House of Fort Worth (RMHFW) sponsored and crafted this post about its work with families of childhood cancer patients.
June commemorates both National Cancer Survivors Day and Father’s Day. For Kansas native Casey Johnson, those are two days he wasn’t sure he would ever attain because in March of 1998, the 12-year-old’s life dramatically changed.
He was diagnosed with Acute Myeloid Leukemia, which is a rare form of leukemia with only a 43 percent survival rate in 1998. Although the survival rate for AML has increased to 66.4 percent, according to the Leukemia & Lymphoma Society, leukemia is still the second-leading cause of cancer death among children.
While the primary goal was saving Casey’s life, there was always the thought that once he achieved all the major survival milestones, he would then have to cope with one of the most common late effects from treatments: infertility. While the infertility may not have been top-of-mind for him when he was 12, it was a concern as he got older.
Childhood Cancer: Treatment
Casey immediately began massive doses of chemotherapy. The side effects were tough, and he fought many infections, but Casey went into remission fairly quickly. He was even able to play in his last two football games in the fall of 1998; however, in March 1999, he relapsed. Due to a rare antigen in his blood, his medical team felt an umbilical cord blood treatment would be the best course of treatment, but in 1999, very few hospitals provided this type of treatment.
Cook Children’s was one of those hospitals. For that, Casey and his mother Tracie moved into the Ronald McDonald House of Fort Worth® (RMHFW). For more than nine months, Casey was in and out of the hospital, but Tracie called the House home. He spent every holiday and his birthday for the next year at RMHFW and Cook Children’s.
Remission
The transplant brought remission and in April, 2000, Casey and his mom went home to Wichita, Kansas. He began life again, going on to finish high school, graduate college, meet his wife, and ultimately welcome his son into this world. Through advances in science, Casey is a cancer survivor and a father.
“I had no understanding the real time that would be spent down here [Fort Worth] or the amount of time I would be away from my friends and family and my home,” says Casey. “I’m 32 now; I’ve been cancer-free for 19 years. I have a beautiful family — my wife Chelsea and my son Cooper. We live a normal life, which I think is the greatest thing I can say.
“Now with a child of my own, it’s hard to put into words how difficult this must have been for my mom. I know I wouldn’t be here today if the Ronald McDonald House didn’t exist. I don’t know if she would be here today if it didn’t exist. The Ronald McDonald House is a home-away-from-home, not just a place to stay. It is a family; everyone is in this together truly support you getting better. It’s a small village of comfort and hope.”
A Village of Hope
In 2018, RMHFW served 869 family visits (total 11,954 nights) for an average length of stay of 14 days. Cancer is the second leading diagnosis for families staying at the House behind premature birth.
For a sick child, sometimes the best medicine of all is having family nearby for more hugs, kisses, and “I love yous.” The 57-room facility provides safe spaces for families to be together only steps away from the hospitals. As part of the 57-rooms, RMHFW retains six transplant suites which are ideal for the transplant patient who has been released from the hospital but is not quite ready to be home. Additionally, the Ronald McDonald Family Room and newly-implemented day program allow families who are not staying at the Ronald McDonald House to receive the comfort and care of its mission, which offers a supportive, home-like community that eases burdens for seriously ill children and their families.
The Ronald McDonald House of Fort Worth is a refuge for hundreds of families each year, and its staff is committed to serving thousands more in the years to come. Its mission is fulfilled by staff and a multitude of volunteers. If you would like to learn more about how you can be involved with its mission, please visit www.rmhfw.org.
Beth Lamb, chief marketing officer for the Ronald McDonald House, has been in education and non-profit communications for almost 25 years. Beth is actively involved with the Fort Worth Chapter of Public Relations Society of America and currently serves as president. She is a graduate of Texas Wesleyan University and is married with two grown children.
