I Am A Fan

I will admit it. I am a fan of Cincinnati Children’s. I often joke that while some people like to check the current rankings of their favorite sports teams, I wait on the edge of my seat, fingers crossed for the annual children’s hospital rankings. Odd? Yes. Strange? I know. . . but the truth.

When my daughter, Willamina was first diagnosed with hepatoblastoma, a rare, one in a million liver cancer, I set to work asking all of the questions that any good parent would ask. I asked about treatment options. I asked about clinical trials. I asked about long-term survival rates. I did my homework and knew what to ask. I was educated and informed.

Initially we were not patients at Cincinnati Children’s, but another midwest children’s hospital. I remember being on the hem/onc floor of the hospital and having a meeting with Willamina’s oncologist.

‘Do you think we should get a second opinion’, I asked.

‘Willamina will get the same treatment no matter where she goes’, was the response that her oncologist gave us.

We breathed sighs of relief. How wonderful! We could proceed without reservation knowing that it didn’t matter where we were, Willamina would be getting the same treatments.

Fast forward three months. Willamina’s massive liver tumor had not gotten smaller. While the chemo had worked in killing most of the tumor, it was still there and Willamina was referred for a liver transplant. We left children’s hospital #1 and went to children’s hospital #2 where Willamina underwent a successful liver transplant. Less than a month later, suspicious spots were showing up in her lungs on follow-up CT scans. The spots were explained away as nothing to be concerned about. As the spots remained and began to increase in size, Willamina was declared to have relapsed.

It was her first relapse in a series of several relapses. We returned to the first children’s hospital for chemo and were told that there was nothing much that could be done. We would try some more chemo, but the outlook was bleak, if not dismal.

We knew that there had to be more options. We knew there had to be someone with answers. Willamina had come too far to let cancer take hold again.

I frequented a childhood cancer site and happened to see several children were being treated at Cincinnati Children’s. In fact, parents were traveling cross country to get to Cincinnati. Some parents were relocating to be closer to the hospital to be treated for hepatoblastoma.

I found an e-mail address of one of the oncologists who was treating several hepato patients that I had been following. I was at work and decided that I would take a chance and email this doctor of whom families were speaking so highly.

I hit send on my email and I almost immediately had a response. I was (and honestly, still am) humbled and amazed that this well-respected physician who, no doubt had more important things to be doing, had actually contacted me. He asked for my phone number and said that he would be calling me later that evening.

That was our first contact with Dr. James Geller.

Dr. Geller did call us that evening. We spoke at length and he advised us to come to Cincinnati immediately. We arrived two days later and knew, after meeting with the team, we were at a unique children’s hospital.

I wish I could say that because we were in Cincinnati, life became easier. Willamina’s cancer was stubborn. It was aggressive. We seemed to be in a constant cycle of relapses, surgeries and chemo. It was incredibly hard. There were days when all I wanted was to have a good screaming crying fit in the middle of the hall.

I wish I could say that Cincinnati Children’s is perfect. The reality is that no hospital is perfect and there were times when this mama had to assert her ‘mother bear’ muscles. I had to be aware and diligent because in the end, I knew my daughter better than anyone.

Our journey did teach us a very important lesson. A lesson that I will share with any parent of a cancer kiddo. . . especially to a parent with a child diagnosed with a rare cancer.

We learned that not all children’s hospitals are created equal.

It seems simple, doesn’t it? Your child is diagnosed and you drive to your nearest children’s hospital because that is what someone tells you to do. You take what is said and go along because surely the doctors have the experience and knowledge to treat your child. Right?

The other hospitals were wonderful places. They did provide good care. We liked our doctors and nurses. They treated us well. They loved Willamina. In our particular situation, they lacked the experience and specific knowledge that we needed to treat hepatoblastoma and eventually save our daughter’s life.

Perhaps it is bold to say, but physician experience with a disease does matter. Access to cutting edge research and technology and treatments does matter. Being proactive matters. Thinking outside of the box matters. Working as a team matters. Not all children’s hospitals are created equal. Same treatments may not mean same outcomes.

So, am I a Cincinnati Children’s Hospital Medical Center fan? Absolutely and unabashedly so! I know that I am not alone and that there are many of us out there who feel the same way about Cincinnati Children’s. I know that we will continue to cheer on our teams of caregivers as they strive to be beacons of hope to our children and to our families.

Katie Clayton

About the Author: Katie Clayton

Katie is mama to three girls, married to Will, a speech pathologist and a cancer mama who knows the power of sharing her story. Katie blogged every day of her daughter Willamina's cancer on CaringBridge and had over half a million visits on the site during her most serious cancer battles. Willamina is now cancer-free and the Clayton's are enjoying their farm and menagerie of animals, but Katie's commitment to connecting with others about hepatoblastoma remains. She's now reaching out to families with children diagnosed with the rare cancer to offer support and advice.

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Comments

  1. diana March 14, 15:55
    hi i will like to know how did the doctors know that your baby had cancer,,,was it through a blood test? or did the baby feel any pain...
    • Katie Clayton
      Katie Clayton Author March 14, 16:59
      We had taken Willamina in for a routine 9 month check up. She had been acting normal, but had been more tired than usual. The whites of her eyes were tinged ever so slightly yellow. As new parents, we didn't think a thing about it. The doctor felt Willamina's belly and immediately sent us for bloodwork and an ultrasound. The ultrasound confirmed the tumor. We felt awful because the tumor was quite large and could actually be felt, but we just had written off the tumor thinking that Willamina was just a chubby baby. Looking back, I do think that Willamina was in pain. She did not like to be on her belly and would cry and fuss. (Also, the bloodtest also confirmed Willamina's specific liver cancer.)
  2. Margie March 15, 10:05
    This is a valuable message of going with your mother instincts, perseverance when searching for the correct medical care, never giving up and listening to the still small voice. Inspirational story that gives hope when at times there seems to be none. With God all things are possible.
  3. diana March 15, 17:21
    THANK YOU VERY MUCH FOR ANSWERING BACK,MAY GOD BLESS YOU AND YOUR BAUTIFUL DAUGHTER...
  4. Tammy Shogan July 11, 12:31
    Hi Katie, my neighbor's little boy was diagnosed with stage 3 hepatoblastoma 4 months ago at 20 months old. Connor had a liver transplant last month, but unfortunately his bloodwork has been worrisome lately. According to the latest posting on his Caringbridge site, Connor was scheduled for another liver biopsy this morning at 8am. His mom, Jamie, is going through such a rough time and feels so alone. I was wondering if you could reach out to her for support... If you would be willing to do this, kindly email me at tammyshogan@yahoo.com. Thank you!
  5. Ted Green July 14, 01:50
    My son Finn is 4 years old and just last week diagnosed with Liver Cancer. We are not sure if it is Hepatoblastoma. We have been told it may not be resectable and he may need a liver transplant. No biopsy has been done yet. We are seeing specialists at Stanford Children's Hospital. But, we have also just learned of the Liver specialists at Cincinnati Children's Hospital. Did your daughter have a biopsy to make the diagnosis? Who was your surgeon at Cincinnati Children's Hospital? How long did you wait for a Liver to become available? God bless you and your family. Ted
  6. Shane December 30, 05:08
    Hello Katie, Our daughter Camryn was diagnosed with stage III hepatoblastoma in November 2014. She is currently undergoing chemo and has spent most of her time in the hospital. Your article has reminded me that we have NOT spoken to anyone, including our doctors, who have experienced hepatoblastoma. While we met some extraordinary families who have given advice, theyare fighting different fights. How can we get in contact with you, or others?
  7. Katie Clayton December 31, 19:48
    Hi Shane! Being able to talk with other families fighting the same cancer is almost a strange relief! To know that there is someone else who has been there and who gets it. . . So important! I would love to be able to email you or chat sometime. Let me figure out how to get my email address to you! Katie