Princess Hannah – An Inspiring Journey

Written by Heidi Milhous (Hannah’s proud mom)

On November 24, 2008, one month & seven days after celebrating her third birthday, our beautiful daughter Hannah was diagnosed with AML (acute myelogenous leukemia). This marked the beginning of an amazing, often-times tumultuous, life-changing journey for our family, a journey that we continue to this day.

I remember the day Hannah was diagnosed like it was yesterday. The images, the conversations, the emotions…every moment of that infamous day is forever etched into my heart and into my memory. Recalling those memories  rips open a wound that even now, almost 3 years later, has not healed. Hearing “your child has cancer” was earth-shatteringly difficult, but not nearly as difficult as the months, the years that were to follow.

Following her initial diagnosis, Hannah was immediately checked in to the hematology/oncology floor of our local children’s hospital. Over the next seven months, Hannah received five rounds of high-dose chemotherapy, each round more toxic and taxing than the one before. Hannah spent nearly all of those seven months inpatient and/or in isolation, away from her home, her sister Camryn, her preschool, her friends, her family, her normalcy. She spent almost every holiday in her hospital bed.

On June 13, 2009, Hannah finished standard treatment in complete remission. She and her brand new baby sister Sydney (born June 11…I was 13 weeks pregnant when Hannah was diagnosed) were released from their respective hospitals on the very same day. It was a bittersweet day, as I knew in my heart that with standard treatment only, Hannah would ultimately relapse.

Unfortunately, my mother’s intuition was correct. Six months later, on December 21, 2009, nine days after Hannah returned from her Make-A-Wish trip, we found out that she had relapsed. Her leukemia was back, stronger and nastier than before. Her white blood cell count was around 53,000, ten times what is considered “normal.” Two weeks earlier, her white blood cell count was normal…that’s how aggressive Hannah’s leukemia was. Hannah received 2 more rounds of high-dose chemo, from December 2009 to March 2010. She spent Christmas in the hospital that year. After Hannah’s second re-induction round, we were told that she achieved a second remission; we were elated. Our elation was short-lived, however, as Hannah’s oncologist later told us that he was mistaken; Hannah was not in remission. Although devastating and utterly heart-wrenching, we had prepared for this possibility and made the decision to have Hannah treated at what we consider the best children’s hospital in the country, Cincinnati Children’s. Little did we know at that time, but it was a decision that would save our baby’s life.

On April 4, 2010, Easter Sunday, Hannah, her Dad, & I packed into the car & headed to Cincinnati, with no treatment plan in place. We left not knowing if we would be away from our home two weeks, two months, or two years. We checked into Cincinnati Children’s on April 5, 2010 and we did not check out until August 31, 2010; Hannah rarely left the hematology/oncology wing during those four and a half months.

During Hannah’s initial consultation at Cincinnati Children’s, we learned that she would need a life-saving bone marrow transplant. Hannah’s sister, Sydney, was a full 10-out of-10 match to Hannah, but our brilliant oncologist, Dr.Stella Davies, thought the match was “too perfect” to destroy Hannah’s leukemia. Hannah was then enrolled in a monumental St.Jude’s study, where she would receive a bone marrow transplant from an unrelated donor that would be a “perfect mismatch,” meaning that the donor would match Hannah on all but one pivotal allele. Finding this specific donor was a long shot, but the only shot we had. Hannah received 2 more rounds of a cutting-edge chemo that was designed specifically to keep Hannah’s leukemia “in check” until we could find the perfect donor. I will never forget the day that Dr.Davies came into Hannah’s hospital room and delivered the amazing news that not one, but TWO perfectly mismatched donors had been found! Hannah began pre-transplant chemo on July 25, 2010. It was one of the most horrifying and thrilling days of my life. Horrifying because the chemo was so incredibly toxic…if Hannah had not received a bone marrow transplant immediately, the pre-transplant chemo would have killed her. Thrilling because it was the first step towards the rest of Hannah’s healthy, cancer-free life.

We will never forget August 4, 2010, the day our beautiful baby received the gift of life from a complete stranger. Aside from Hannah’s birth day, it was the greatest day of our lives! All that we knew of Hannah’s donor was that she was a 29-year old woman…and the most selfless, giving, caring, loving woman that we had ever known. At 7:30pm on August 4, Hannah’s transplant began. It was very anticlimactic, similar to a blood transfusion, of which Hannah has had many. A little more than three hours later, at 10:58pm, the transplant was completed. Hannah slept peacefully through the entire process. Hannah’s new blood circulated through her veins, the new, healthy cells finding their way to where her old, cancer-ridden marrow used to be.

Hannah’s recovery was better than we could have expected. She had very mild graft-vs-host disease (graft-vs-host is a condition in which the “graft” (Hannah’s donor cells) attacks the “host” (Hannah)), which was exactly what we wanted (too little or too much graft-vs-host can be life-threatening). To the amazement of Hannah’s team, her new platelets began to engraft at Day +15 (15 days following transplant), which was considered very early, but a great sign that the transplant was successful. Hannah was discharged from the bone marrow transplant wing on Day +28. She walked out the front doors of Cincinnati Children’s with her mommy, daddy, and sisters by her side. It was an amazing, momentous day.

We spent the next 56 days living at the Ronald McDonald House, where Hannah remained in close proximity to Cincinnati Children’s for a plethora of follow-up appointments. Hannah became a medical anomaly, as she recovered more quickly than was thought possible. Her blood counts were normal for the first time in two years and she abounded with endless energy. On October 27, 2010, 84 days following transplant, Hannah was released from the care of Cincinnati Children’s, more than two weeks ahead of schedule. She was going HOME for the first time in more than six months!

Since we have been home, Hannah has only continued to thrive. She receives follow-up care at the Cleveland Clinic, where she has charmed a whole new team of doctors and nurses! Hannah is 16-months post-transplant and hasn’t had so much as a hiccup. She is definitely the healthiest of our four daughters, only experiencing the sniffles occasionally. Hannah began kindergarten this year, which she absolutely loves. She is excelling both academically and socially, which is simply amazing for a little girl that spent a third of her life confined to a hospital bed.

Hannah is the poster child for positivity. During the early days and weeks following her diagnosis, I almost fell apart, but she wouldn’t let me. When she received those first doses of chemotherapy and her hair began to fall out, I faltered; she did not. At a time when I was supposed to be her strength, she was mine. When I got wrapped up in the survival statistics and the “what ifs,” Hannah grabbed my hand and showed me that she wasn’t dying from leukemia, but living and fighting to live. She wasn’t going to let a word like “cancer” change who she was or how she was going to live her life. Even during the times when she was extremely sick, puking her guts out from the toxic effects of chemo or writhing in pain from an excruciating neurosurgery, Hannah never lost her light. I am grateful for Hannah’s cancer diagnosis. God used Hannah as a vessel to create change in the hearts and lives surrounding her. Of course, I never wanted her to suffer the way that she did and I’ll be shaking away nightmares from what we have experienced for the rest of my life, but God saw us through and made us stronger on the other side.

I read this quote during Hannah’s treatment and it helped me through the most difficult days. I remember it often with fondness:

Though scarred and beaten by a deadly disease, our 6-year old daughter is alive and cancer-free today! She continues to touch the hearts of everyone she meets and holds those hearts forever. Hannah is proof-positive that miracles do happen.