Holding onto Hope: The Rest of the Story

Note: Emma’s story was recently featured in the March edition of The Friend, a children’s magazine published by The Church of Jesus Christ of Latter-day Saints. The title of the article is “Holding onto Hope.” This blog post tells the rest of Emma’s story.

In early spring of 2014, my seven-year old daughter, Emma, was diagnosed with strep throat. My once active daughter was now tiring easily and taking naps–something she never did before getting sick. Her pediatrician prescribed a 10-day treatment of antibiotics and the usual suggestions (e.g., get plenty of rest, drink lots of liquids, etc.) that normally accompany an illness like this.

Toward the end of the 10 days, my daughter wasn’t showing any signs of improvement; she still had a high fever and was very lethargic. That Saturday night, my wife and I decided that we should take her to the emergency room. We knew something wasn’t right.

The doctor examined her and saw that she was still running a high fever. He gave Emma an oral steroid, Prednisone, and told us to continue giving her the antibiotic and to return if she didn’t get better.

A week or so passed by, with my daughter showing positive signs of recovery: she played in a tee ball game and went to school.

Her recovery was short lived and she soon complained of being tired all of the time. Emma came home from school and immediately took a nap. When we took her temperature, it was normal, but we were worried.

On Friday, May 9th (my birthday), Emma complained that she was too tired to go to school. She wasn’t running a fever, so we sent her to school. When we came home in the afternoon, we received a report from the school that she spent a majority of the day sleeping in the nurse’s office.

A Trip to the Emergency Room

On Saturday, Emma spent most of the day in bed. My wife and I knew something was wrong so we decided to take her back to the emergency room. My wife took Emma back to the local hospital that night.

A blood test revealed that her hemoglobin level was a three–a number that would be fatal for an adult. After a blood transfusion, Emma was out of immediate danger, but she needed specialized care available only at Connecticut Children’s Medical Center.

An ambulance soon transported my wife and daughter to Connecticut Children’s. Emma was moved from the emergency room and admitted to a room on the 8th floor of the hospital, where a team of doctors specialize in hematology and oncology. Needless to say, neither my wife nor I slept well that night or weekend.

Mother’s Day and the Diagnosis

That Sunday was Mother’s Day, and it wasn’t exactly how either of us imagined it would be. Instead of a day of honoring mothers, we began “Emma’s Journey to Remission”.

 Emma’s doctor performed a bone-marrow biopsy so she could narrow down the causes of her sudden illness.

On May 13th, we heard the words no parent wants to hear: “Your daughter has leukemia.”

Not just any leukemia, Emma had acute undifferentiated leukemia, a rare form of the disease.

Emma’s oncologist said that her leukemia could be treated with chemotherapy, but that she required a bone marrow transplant to have any chance at remission. What a blessing it was to later learn that Emma’s older brother, Alex, then aged 10, was a perfect match for his sister.

A Central Line and Chemotherapy

Before she could start receiving treatment, Emma needed to have a central line known as PICC placed in her arm. This line would allow for long-term intravenous access to deliver the chemotherapy and other drugs through her body.

Emma received three rounds of chemotherapy at Connecticut Children’s before her cancer levels were low enough for a bone marrow transplant. Each round of chemotherapy meant a month-long stay in the hospital, with a good portion of that stay spent in an isolation room due to her weakened immune system.

During the last round of chemotherapy, Emma developed a serious blood infection that required a week-long stay in the pediatric intensive care unit (PICU). I was with her the night that she crashed and remember offering a multitude of prayers throughout the night and during the ensuing week. Thankfully she recovered after spending what felt like a very long week in the PICU.

 

Emma’s Baptism

When Emma was finally discharged from Connecticut Children’s, and before heading to Boston Children’s Hospital for a bone marrow transplant, Emma chose to be baptized a member of The Church of Jesus Christ of Latter-Day Saints and receive the Gift of the Holy Ghost. The timing couldn’t have been more perfect. If she had been unable to be baptized before transplant, her wait would have been nine months post transplant.

To prepare her for transplant, Emma’s oncologist explained that she would need a final intense round of chemotherapy and full-body irradiation, guaranteeing that her own bone marrow—and any remaining cancer cells—would be entirely eliminated. All of these steps would ensure that her body was ready to receive her brother’s bone marrow. The treatment was not easy, and it had some unfortunate side effects, but Emma was now ready for transplant.

The Bone Marrow Transplant

October 2, 2014 is a date that Emma and the rest of the family will never forget: transplant day!!

Alex was to arrive in the morning so that doctors could extract his bone marrow to give to his sister. He emerged from surgery without any issues or complications. Because Alex’s blood type is O positive and Emma’s blood type was O negative, the hospital needed to some processing to make the bone marrow suitable to give to Emma.

One of the most uplifting—and certainly the most touching moment of the entire process—came when Emma went to visit Alex in his room after he came up from the extraction procedure. If ever there were a more touching and visible expression of love, this was that expression. Alex and Emma now share a bond that no one can take away from them. It is a bond that will last throughout their lives.

The wait for the processed bone marrow was agonizing for our family.

When the bone marrow finally arrived, the excitement was palpable. The transplant was uneventful, and even a bit anti-climatic when we saw that the bone marrow looked just like any other transfusion of blood that Emma had already received. Nevertheless, it was a special day and represented an important milestone in Emma’s journey to remission.

 

The Road to Remission and Lessons Learned

This journey was a difficult one for Emma and for the entire family. The stresses were incredible and often overwhelming. At almost every turn, we faced some sort of challenge, difficulty, or trial. That said, we were extremely blessed with loving family members, friends, neighbors, ward members, and a caring local community. The outpouring of love and support that we received from all of the aforementioned individuals was overwhelming and greatly appreciated. We could not have made it through this refining experience without everyone’s help.

Emma’s story has a happy ending, for which I am extremely grateful—her cancer is now in remission. Sadly, not every family’s story has a happy ending. Why did Emma live and other children with leukemia die? I do not know the answer to that question, but I feel confident in saying that our Heavenly Father loves all of his children equally.

As I contemplated all of the possible outcomes of Emma’s illness, and as I prayed to our Heavenly Father to comfort me, this was the answer that I received from Him: Emma will be a part of your family, no matter what happens.

This was not the answer that I was expecting to receive, but it was calming and reassuring nonetheless.  Why? Because of my sincerely held belief in the eternal nature of families–that I can be with my wife and children even after death. Because our Heavenly Father loves us, I believe that he has restored the power and authority to seal families together for time and for all eternity, in holy temples, dedicated as Houses of the Lord, located throughout the world.

If you would like to learn more about eternal families, you can visit Mormon.org.