Our patients’ stories: Alannah’s long road to recovery

Boston Children's Hospital

By Debi Skolas

In the fall of 2007 our lives changed in a way that not many can imagine when our granddaughter was diagnosed with a rare and incurable tumor. She had cancer. Alannah was only 5 at the time and our options for treatment were few, but we were willing to try them all—surgery, chemo, trial drugs, anything—to save her.

Terminal, that was word they kept using, and so I settled for less for my granddaughter. I settled for only a couple of hours of laughter and play a day; I told myself we would get through the tears and pain as long as we had those precious moments of laughter. Now, I’m not talking months here, I’m describing years. Alannah would lie on the couch and cry while I rubbed her legs and back, but we would get through it, she and I. I settled.

There are some moments in life that are in bold print and the moment that Dr. Heung Bae Kim walked into a conference room to meet with us in 2010 is one of them. The End of Life team had just left, preparing us to accept that Alannah might not make it. But Dr. Kim told me he thought he could save Alannah. He gave me the odds: 50 percent she would not survive the surgery and 20 percent we would lose her spinal cord, but there was that 30 percent chance we would walk away tumor-free with a spleen that didn’t leak, a liver that had a blood supply, a new stomach (she had lost that years ago), an esophagus that would allow her to swallow and intestines free of disease. Have you ever had a moment when you just knew? All hope had been taken from us over many hard, long years, but in a matter of minutes, Dr. Kim gave it all back. I knew deep in my soul that she would live and he was the one that would save her. I just knew.

We were listed for donor organs, seven of them, in August 2010. We were told the wait would be three months to a year and were discharged from Boston Children’s. I can tell you those first weeks at home were difficult; transplant is always the last resort, so we knew we were running out of time and options. We were now in the transplant phase of our journey, and for the first time in my life I started having panic attacks, moments that I could not breathe.

Soon summer became fall, then winter, then spring, then summer again and the call still had not come. Alannah was getting worse, she was having bleed-outs and more pain, and her was belly swollen with fluids and tumor. By late October 2011, 13 months had passed; we no longer kept our bags packed. But on October 27 at 10:45 pm, the phone rang: it was THE CALL. I knew before I picked up the phone that our wait was over; Alannah would get her new organs.

When you choose transplant you know the road will be rocky and rough, and ours certainly was. I lost track of the number of times she went back to the operating room; the tumor had spread from her abdomen to her chest, that invisible and unstoppable beast had been taking more.

We’re now in the post-transplant phase of this trip and settle is something I no longer do. I have experienced joy in a way I never thought possible. Watching her play brings tears to my eyes; pain is no longer a part of her life. Over the past five months, I have often thought: If this is all I get, these few months, it was all worth it. Dr. Kim and Dr. Khashayar Vakili gave her back something she had been robbed of years ago, her childhood. Their golden hands and minds brought her back to us.

We’re now nearly eight months post transplant and Alannah is 10 and tumor-free. Her new esophagus, liver, spleen, stomach, intestines and pancreas are functioning just fine and I know, like I knew then, that there are only two men in this world that could have performed this miracle and saved Alannah, Drs. Kim and Vakili. We will be forever grateful to the transplant team and all the teams that had a hand in saving Alannah at Boston Children’s Hospital, the greatest children’s hospital in the world.