Hem/Onc/BMT Members

I am a proud mother of 3 daughters, advocate for those with all abilities and director of a non for profit aiding families with children undergoing cancer treatment.

Being a part of the Children’s Mercy PFAC is wonderful way to give back while contributing to our fellow cancer community. 

I’m a new PFAC member.  My youngest daughter, Jordan, was diagnosed with Hodgkin’s Lymphoma in June 2020.   She’s had numerous rounds of chemo, a stem cell transplant and brentuximab infusions. I knew after the challenging journey, that I wanted to give back in some way and share my experiences to help other families. Jordan has been very positive and a source of encouragement to the entire family.  She too wants to give back to the place that has given her so much.

I am humbled by the kindness and concern all the staff at Children’s Mercy has shown to myself and Jordan. It has made this journey easier to navigate. I appreciate the doctors talking to us and not at us; we understand each step we are taking and how it will affect us. 

My husband, Alex, and I have been blessed with three wonderful and beautiful kids, Brody, Ace, and Chloe. All three of them have been inpatient and treated by several different clinics at Children’s Mercy. Our lives were forever changed in May of 2019 when our daughter Chloe was born. Chloe was diagnosed through newborn screening with a rare genetic disorder called MPS-1 or sometimes called Hurler syndrome. It affects many of the body’s functioning systems. Currently there is no known cure for MPS-1. In August of 2019 Chloe received a bone marrow transplant at Children’s Mercy. We are happy to say she is one hundred percent donor cells! Unfortunately, there are many things still affected by her disease that her transplant can’t help. Now she also has a multi-disciplined team at Children’s Mercy who are beyond dedicated to helping Chloe. They are always there to help guide and support us in any way they can.

I joined the PFAC to help give back to a hospital that has given so much to my family and always go the extra mile for us. I also want to help families and patients in any way possible.

My wife Alison and I are the parents of two sons Dylan and Caden, and one daughter, Avery. In December of 2020, at 6 years old, Avery was diagnosed with Stage 4 Wilms tumor. Nothing will prepare you for the moment you hear that your child has cancer.
The care that Avery received at Children's Mercy was incredible. Our relationship with the doctors and nurses allowed us to feel that we were getting the best possible care for our daughter. We are happy and grateful to say that Avery is happy and healthy and as of today, cancer free.

Our experience at Children's Mercy has made us want to "give back" in any way possible. The decision to join the PFAC was the perfect opportunity to do so.
Hopefully our experience over the last two years will make it easier for families of newly diagnosed or those that are going through treatment.

I was very excited and proud to join the PFAC starting in June of 2023.  I have twelve year old twins, Hunter and Jasper, and a seven year old boy named Conner.

We are Canadian, but now proud residents of Overland Park Kansas.

Just after his fourth birthday, at the beginning of the pandemic, Conner was diagnosed with adrenoleukodystrophy.  It is an inborn error of metabolism that prevents the body from metabolizing long chain fatty acids. These acids destroy the adrenal glands and build up in the long fibers of the spinal cord and in the brain. Our son developed the most severe form of the disease called childhood cerebral adrenoleukodystrophy which destroys the myelin in the brain. This condition causes boys to lose their vision, hearing, ability to walk, talk and each until they fall into a vegetative state and die, usually within six months to two years without intervention. The only treatment at the time was a specialized bone marrow transplant and the window for eligibility is narrow.

We were in Canada at the time and they do not have ALD specialists and could not give us a timeline to treatment. We were denied out of country coverage and liquidated our retirement savings to get our son to Minnesota, where he received a life saving bone marrow transplant and his disease has been completely halted. Eventually, we won our case and Conner's transplant was covered by the Canadian government.

After arriving back in Canada after transplant, my husband Craig was transferred to Kansas. We love it here! Kansas has been amazing to us!

Our specialist in Minnesota set us up with the most amazing care team at Children's Mercy who have provided Conner with the most exceptional care. Our family finds extraordinary meaning in helping families with medically complex children and I am excited to make a positive contribution to the Hem/Onc/BMT PFAC.

I am the proud mom of two special little girls, one who was born with a rare multisystem disorder called Shwachman Diamond Syndrome. A component of the disorder, bone marrow dysfunction, was treated with a bone marrow transplant at Children’s Mercy Hospital in 2019. Today, she is thriving!

We continue to be seen by several specialists at CMH. We will forever be grateful for the attentive care and perseverance of our providers who were able to identify and confirm our daughter’s condition when outside providers couldn’t. Truly, CMH has saved her life.

As a member of the Family Advisory Board, Patient Experience Executive Steering Council, Hem/Onc/BMT Patient Family Advisory Council, and Patient Rights & Responsibilities Committee, I advocate for expert pediatric care in our community. It became my passion when my son, Buddy, was diagnosed with a rare brain tumor at six months old, resulting in multiple disabilities.

Our multi-disciplined Children’s Mercy team is dedicated to enabling Buddy to live his best life and equipping our family with information and resources to maximize his potential. Children’s Mercy has our back and it’s felt in every interaction. I want all families to feel that way.

In 2018, my son was diagnosed with Acute Lymphoblastic Leukemia. He underwent 3 ½ years of chemotherapy. He is still seen by the Hematology/Oncology Clinic along with several other specialty clinics within Children’s Mercy Hospital for various issues that are related to his cancer diagnosis.

I became a volunteer at Children’s Mercy (4 Henson) in 2022, and then in 2023 I joined the Patient Family Advisory Council.  Our family is so grateful for all that Children’s Mercy Hospital has done for us.  This is one small way I can give back to those that mean so much to us.

Our son Cody has been a patient at Children’s Mercy Hospital since he was an infant.  He was diagnosed with Acute Lymphoblastic Leukemia in May of 2021 as a young adult with special needs.  Since that time, he has had several health issues related to the chemo treatment.  Our family has been supported by the staff and different teams required to help Cody get through his cancer treatment and other needed procedures.  

Children’s Mercy feels like a team dedicated to healing our son, but this awesome team is also helping our family navigate this disease.  We are very blessed to have this stellar hospital in Kansas City, and I’m pleased to be able to help the next family at they walk this path made better by the staff at Children’s Mercy Hospital.

My husband, Joe, and I have been blessed with 3 wonderful children.  On January 23, 2017, our world was turned upside down when our oldest son, Jackson was diagnosed with Chronic Myeloid Leukemia. That day Children’s Mercy became a huge part of our lives.  Jackson has been treated in the Hematology/Oncology Clinic since then and has also had a few hospitalizations along the way. We have been so fortunate to have great care, and we have been continuously surrounded by wonderful people throughout his journey.  

Our family has always wanted to give back to the place that has given us so much.  We are blessed to have such an amazing children’s hospital in our city.  I’m very happy that I have been given the opportunity to be a part of the Hem/Onc/BMT PFAC. It is the perfect position to help other families who are on this tough journey. Being a voice to help others is important to me and I am grateful for this opportunity.