We also include our children - Alanna 15, Emmett 5, Griffin 3 - in the discussion to set goals for them, as well.
January 2019, we did this as we always do, completely unaware at how our lives could completely change in a span of five days.
When we got the call from Alanna’s GI doctor saying that some of her labs came back abnormal, we were not overly concerned. Having been diagnosed with Crohn’s disease at the age of ten, we were accustomed to having labs that didn’t look “great.”
She wanted me to take her to Children’s Hospital in Buffalo. We arrived on Monday morning and, at that point, we did not even know really what labs were “off.” They gathered more blood work and then said they wanted to do a kidney ultrasound. It was at this point that I became aware that they were worried about her kidneys, not anything to do specifically with her Crohn’s.
Shortly after that, a doctor came in and pulled me out of the room. He told me in the hallway that they thought they saw a mass on her left kidney and wanted to admit her to do a kidney biopsy. All I could think was - it’s cancer - they are going to have to remove her kidney and do chemo and radiation.
The next few days were filled with kidney biopsies on both the left and right kidney and a slew of other tests. We were asked to sit down and were given news that we did not expect. Our daughter had chronic kidney disease. Alanna was in End Stage Renal Failure and only had 10% kidney function. She would need a kidney transplant…FAST!
Our world crumbled.
Over the next few weeks, we were asked to choose a hospital for transplant since Buffalo does not perform pediatric transplants. After much research, one hospital in particular stood out: UPMC Children’s in Pittsburgh, PA.
I decided that I would be the first to be tested for a donor match since close blood relatives are often the best matches. I had many medical tests and meetings with surgeons, doctors, coordinators, pharmacists, and psychologists to determine if I was physically and emotionally ready to be a donor. After a nerve-wracking two weeks, we got the call we were waiting for:
I was approved as a match!
On one hand, this was the biggest blessing. It was incredible to be approved as a match and to know that Alanna would be able to get my kidney. She was just as excited to be getting her mom’s kidney which would allow her to be healthy once again. Many people said that I was blessed to be able to give her life, not just once, but TWICE. I had the ability to save her life and I was honored to do it.
On the other hand, it made logistics harder. As an adult, I would not be able to be a patient at the Children’s Hospital. I would be ten minutes away from her, in a different hospital for my surgery. In addition, my husband struggled with wanting to be in two places at once. Logistically, we would need multiple caregivers; one for me, one for Alanna and a third for our two boys.
In the fall, we were blessed to hear that Alanna was eligible to receive a wish through Make-A-Wish. Alanna was able to do research and spend time looking into what types of wishes were offered by this incredible organization. It was the first time I had seen joy in her soul in a long time. By focusing on her wish, she was able to be distracted from the mundane medical issues and dream a little. In October, we were able to meet with two lovely women who talked with Alanna in depth about her ideas. We knew that with the transplant surgery happening soon, we would not be able to get her wish fulfilled until after, but it was wonderful to be able to see her look into the future with bright eyes. Focusing on her wish gave her hope and something life-changing to look forward to.
We finally got the call and surgery was scheduled for November 8th, which gave us only four weeks to plan and strategize being away from home for over a month. Before we knew it, we were driving four hours to Pittsburgh the day before surgery so that we both could be admitted to our respective hospitals. My sister flew in from California to be the primary caregiver for Alanna during surgery and the first two weeks of her recovery. My husband stayed with me as my caregiver. Our boys stayed at home with their grandparents for the first week and a half.
I went into surgery first on November 8th at 8:08 am. My surgery lasted three hours and Alanna’s two-and-a-half-hour surgery started after my kidney was out and deemed perfect for transplantation at 9:02am. My right kidney was taken by ambulance, complete with lights and sirens, to UPMC Children’s where it was transplanted into Alanna’s abdomen.
The week following surgery was filled with ups and downs. But the great news was that my kidney started working right away for Alanna! Her numbers were incredible, and she was able to be discharged after only seven days. Alanna and I were actually both discharged on the same day and arrived at the Ronald McDonald House within minutes of each other. What a surprise that was! Our reunion was full of tears!
Our family spent the next four weeks at the house, being loved on by volunteers and staff. We were blessed with meals, housing, and goodies for the kids along with visits from a rising country music star, a magician, and even Santa! We met so many wonderful families who have since become friends. We shared heartaches and triumphs and cheered each other on during some hard times.
We received an early morning call on December 10th to tell us that her kidney looked great and we could go home.
The emotions that went into everything that we had gone through over the past 11 months came flooding in. We were actually going home after a long five weeks and would be home in time for Christmas. We packed up all of our accumulated stuff from our one-bedroom apartment, filled up our two cars and made the four-hour journey HOME!
We still have a lot of recovering to do, physically and emotionally, with many more trips back to Pittsburgh for follow-ups, and to the Children’s Hospital in Buffalo for bloodwork, but we are so grateful to be home and to be together!
“Home for Christmas” never sounded sweeter and our Christmas tree never shined brighter. Now…Alanna has a WISH to be look forward to. Stay tuned for the other part of her story when that comes to life.