Anaplastic Wilms' Tumor Research Grant to Commemorate Harper's 2nd Angelversary

December 30th marks the 2nd Angelversary of our namesake, Harper.

It is fitting that today also marks a continuation of our efforts to share hope through the funding of additional research aimed at finding new and improved treatments for Anaplastic Wilms' Tumor (Harper's diagnosis).

Hope From Harper is announcing the award of a $5,000 grant to the Children's Cancer Therapy Development Institute to support a research study titled "A More Effective and Less Toxic Treatment Strategy for Anaplastic Wilms' Tumor" - involving Andy Woods.

Andy Woods (left) with Dr. Charles Keller (right)

Andy is a Wilms' patient parent turned cancer researcher who is bravely pursuing a change in career to enter the childhood cancer research world. We were able to provide Andy a smaller grant earlier this year and are thrilled to continue our support of Andy's research at the cc-TDI with this larger and even more impactful grant.

Join us in remembering those angels gone too soon. And THANK YOU for your ongoing support of our efforts to help in finding a cure. #sharehope

You can donate to support our work to bring hope to kids and families fighting childhood cancer by clicking HERE

Hope From Harper Supports Anaplastic Wilms Tumor Research

Hope From Harper is announcing the award of our first direct research grant, given to the Children's Cancer Therapy Development Institute (cc-TDI), located in Beaverton, Oregon.  This grant will support research being conducted by Andy Woods at cc-TDI.

Andy Woods (left) and Dr. Charles Keller, MD (right) in the research lab

Andy Woods is a unique kind of pediatric cancer researcher.  Andy is father to daughter Stellablue, a childhood cancer survivor who was diagnosed at age 4 with Diffuse Anaplastic Wilms Tumor - a rare, aggressive and often unresponsive sub-type of Wilms Tumor. After Andy's experience as parent of a childhood cancer patient, he is seeking to help find and develop new, less toxic treatment options for types of childhood cancer that don't respond well to current treatments.

“I am thrilled to receive this grant from Hope From Harper for our Anaplastic Wilms Tumor project. Children with the anaplastic variant of Wilms tumor respond poorly compared to their non-anaplastic counterparts. The goal of our project will be to develop more-effective treatment strategies for these particular Wilms kids suffering with anaplastic disease,” says Andy.

Hope From Harper was founded in memory of Harper Wehneman, daughter of the organization's founders, Brian and Melissa Wehneman. "Harper, like Andy's daughter Stellablue, was diagnosed with Diffuse Anaplastic Wilms Tumor. It seems fitting that Hope From Harper's first direct research grant should be to support a parent-researcher who is looking for improved treatments for Harper’s specific type of childhood cancer. We're so happy to help fund Andy's work at cc-TDI to help these kids who face such a challenging diagnosis," says Brian Wehneman, Hope From Harper's Executive Director.

Doctor Charles Keller, MD, Scientific Director of the cc-TDI says, “We are grateful that Hope From Harper has supported Andy’s research project on anaplastic Wilms tumor.  When childhood cancer is unusually rare, grass roots efforts really matter.  The contribution of Hope From Harper to Andy’s pilot project is tremendously empowering.  This work will dovetail with the Anaplastic Wilms Tumor Roadmap to be written at the parent-driven Nanocourse a few weeks from now.  We are privileged to be part of Harper’s memory in this way.”

Hope From Harper is awarding a $1,000 grant to support Andy's research at cc-TDI, which is associated with a summer residency at the institute. This grant will allow Andy’s research project to conduct additional cell-line analysis that will help confirm strong applicability of study results to anaplastic Wilms Tumor.  

Learn more about Andy and Stellablue's story HERE

It's The Little Things

Sometimes we're moving so fast, or we're overwhelmed by so much going on that we don't get the opportunity to stop and think about the little things that we have or happen to us that makes our most stressful times a little bit easier.

When you are in the midst of the battle for a child's life, the littlest things can sometime mean the most.  You know you need to eat, but your mind and energy is on your child.  You may be hungry, but since you haven't been to work in 6 weeks, you may not have the extra funds to pay for restaurant food that's close to the hospital.  But that's not important to you, because your focus is on the child lying in the bed in front of you - as it should be.

We're trying to help families with this issue.  We've launched two different initiatives that we hope will help bring hope to childhood cancer families who are in the hospital with their kids.

First, we are regularly taking a full catered meal to the Addison Jo Blair Cancer Care Center at Kosair Children's Hospital. While in the hospital, meal choices for families can be pretty limited.  Your child's nutritional needs are supported by the hospital, but families are often on their own to find food.  If funds are low or a parent understandably doesn't want to be away from their child long, getting a good meal can be a huge challenge.  Our catered meals provide a no-cost, convenient food option that is available to the children on the floor, their families and even the hard-working staff taking care of the kids.

These meals have initially been scheduled quarterly, and we are in the process of working to find additional partners to increase their frequency so that we can make sure families have access to good food conveniently while they are in the hospital with their kids.

But we realistically can't bring food every day, so we have started to support families in another way.  While outside-of-the-hospital options for food is somewhat limited, there are local restaurants that can provide a break in the monotony of frozen meals or hospital cafeteria food.  But, eating out is a strain on most budgets, and many parents find it hard to work while their child is hospitalized, further making financial situations worse.  So, we've begun to provide meal gift cards to families in the hospital.

These gift cards cover restaurants that are reasonably close to the hospital, some of which even deliver.  Additionally, we have provided some grocery store gift cards to allow families to shop at a local market to get their food, especially useful if dietary restrictions are involved.  We will be regularly replenishing these gift cards so that families in need have the support they need.

If you know of a local restaurant manager/owner who would might be interested in supporting our meal catering program, please email info@hopefromharper.com.

If you would like to directly support our meal gift card program, and help provide meals to families, you can donate by clicking HERE.

These small things, making life just a little bit easier while families are focused on their child, is one of the ways we are working to bring hope to kids and families fighting childhood cancer.

How Time Flies

One year ago, excited and nervous, we jumped into the deep end of the pool and announced the creation of a new non-profit organization - Hope From Harper.  We want to take a moment and look back at what we've been able to accomplish over the past year and where we hope to go next.

We started with a simple desire to bring hope to children and families fighting childhood cancer through investments in research and improvements in care.  Our intention was to continue Harper's legacy of hope and joy and help raise the spirits and the care of other children facing childhood cancer today and into the future. We maintain that goal today, and are continuing to look for ways to fill unmet needs in the childhood cancer community.

As a small startup charity we knew to independently fund childhood cancer research would be difficult, specifically since we lack the infrastructure for grant application review and selection.  With limited funds available to start we understood that our impact would be muted if we went it alone.  So, we partnered with the St. Baldrick's Foundation, a leading childhood cancer research funding organization, with a worldwide presence funding more pediatric cancer research than any other private organization.

We are proud to report that since starting work with the St. Baldrick's Foundation in early 2015, Hope From Harper volunteers and shavees (and we've shaved more than 100 heads!) have successfully raised more than $116,000 for childhood cancer research in Harper's memory. Our combined efforts have been so successful that in 2015 Hope From Harper had the opportunity to name a research grant with Dr. Daniel Lee, supporting exciting work on a new treatment approach called immunotherapy.  Immunotherapy holds the potential to allow tailored and custom therapies where a patient's own immune system can be used to fight and defeat cancer cells and represents one of the most promising developments in cancer treatment today.

But research is not our only focus, and so our work has continued in other areas as well, exploring and ultimately working to build other programs that directly and indirectly assist kids and families in the fight for their lives.  Development of ideas into programs has taken more time and effort than we had originally hoped, but we have kept at it, relying on supporters and volunteers to help drive us towards programs that can we can launch.

We now quarterly bring a meal to patients, families and staff at the Addison Jo Blair Cancer Care Center at Kosair Children's Hospital. Based on our personal experiences, we know that kids and families find that food options in the hospital quickly lose their novelty, and the logistics and options for getting food from outside the hospital can be challenging.  Our volunteers bring a hot meal, prepared by partner restaurants or caterers, to the floor and serve any and all (patients, families and even the incredible medical staff) that are there that day.  The availability of different and delicious food, offered at no charge and served with a smile can bring light to an otherwise dreary day, and we're thrilled to be able to provide it.  We hope to expand this program to provide food even more regularly as we build our list of partners and volunteers who can help us do it.

Serving lasagna

In late 2015 we provided a special gift to our friend Gabe. Gabe began treatment at about the same time as Harper, and we had the pleasure of meeting him and his family during Harper's journey.  Gabe underwent a stem cell transplant and we were able to provide some comfort and entertainment items for him and his mother based upon our experience during Harper's tandem transplant.

Gabe with his new Nerf gun

Gabe's gift got us thinking, and over the course of several months we worked with the transplant team at Kosair to develop a process where all transplant patients will be given the opportunity to receive a transplant kit.  These kits will be custom-filled based upon the preferences of the child and caregiver and our own experience of useful and sometimes overlooked items for a long hospitalization.  We launched our kit program in March 2016 and are looking forward to providing these kits to all Kosair transplant patients in the future.

We know that while there is much we can and will do to help bring hope to kids and families fighting cancer, we also recognize that we can't be everything to everyone, and with that in mind we have chosen to support select complementary childhood cancer organizations.  One of the first is Camp Quality Kentuckiana which offers a special summer camp for kids who are fighting or have fought cancer, allowing kids with cancer be kids again.  Harper had the opportunity to attend camp in the summer of 2014, and enjoyed it immensely.  So, in order to help spread the impact of our organization Hope From Harper has sponsored the zip line for the 2016 camp.  They are expecting a record number of campers (which is exciting and somewhat saddening) who will have the opportunity to experience flying down the zip line!

Harper on the zip line in 2014

There are several other programs and projects in the works.  While we are bursting to tell everyone about them, we want to ensure they are fully baked before we share, so instead we'll share a little bit of the FUN we've had along the way this year as well!

In August we held a Chili Cookoff, inviting supporters to enter their best homemade chili for a chance to win a coveted GOLDEN SPATULA! Contestants entered the spicy, sweet, vegetarian and open classes with attendees of the event voting for their favorites! It was a great time with many families enjoying delicious chili!  While they were all good, the top spot had to be awarded and went to Brenda Simmons with her vegetarian chili entry!

In November we hosted the Bootlegger's Bash, a prohibition-era themed event with great food and live jazz! We had such a great time, we plan to repeat the event again this coming November!  Keep an eye out for more details later this year!

photo courtesy of Karen Bassett

photo courtesy of Karen Bassett

We have certainly been blessed to have such great support for our efforts to extend Harper's legacy of hope and joy to other kids and families undergoing treatment for childhood cancer.  We thank each and every one of our volunteers and supporters for helping us have such an incredible first year, and we are looking forward to continuing our work and doing even more to help kids and families and ultimately find cures.

#sharehope

- Brian and Melissa Wehneman

Karting for the Kids!

 

On Thursday April 14th Hope From Harper and Camp Quality Kentuckiana will host the Karting for the Kids event at Bluegrass Indoor Karting.

Drivers can be as young as 7 years old (48 inches in height required) and race fees start at $20!

To register for the event, please visit http://tinyurl.com/karting4kids  

All proceeds benefit kids fighting cancer through Hope From Harper and Camp Quality Kentuckiana

Bootlegger's Bash - Preview Coverage

Read and watch some of the preview coverage The Bootlegger's Bash is receiving!

Insider Louisville - by Sara Havens

WDRB - by Kate Springer

Tickets are still available and can be purchased in advance at tinyurl.com/bootleggerticket

Gabe

When Gabe was 17 years old, his life, like those of so many teenagers, was focused on finishing high school, playing his XBox, watching TV, seeing movies with friends and (unlike most kids) driving his white '82 Super Sport El Camino.  But while taking his final exams during his Junior year he suddenly collapsed at school and his normal teenage life was interrupted by a diagnosis of medulloblastoma - a cancer tumor on his brain stem.

Gabe underwent surgery, chemotherapy and radiation and fought his cancer for 15 months before being declared No Evidence of Disease in August 2014. Gabe then got back to continuing his regular life but in May 2015, just 2 days after graduating from St. Xavier High School, Gabe and his family received the news that his follow-up scans showed he had relapsed.

Now Gabe is undergoing a stem cell transplant, which is an aggressive and a far-from-easy treatment.  He has received extremely strong chemotherapy, obliterating his bone marrow and immune system, and has gotten infusions of his own stem cells to allow his body to rebuild his bone marrow so he can once again produce his own blood cells and immunity. While his bone marrow regrows, he fights pain and weakness and requires blood and platelets every few days.

Gabe and his mom Lisa (who is staying with him in the hospital) were the recipients of our first-ever Hope From Harper Transplant Survival Kit when Gabe was admitted for his stem cell transplant.  Stem cell transplants can involve hospital stays that can be weeks (and sometimes months) in length without being able to leave the hospital. Having a few comforts (especially a few things they didn't think of or know to bring with them) can make life a little more bearable during such an ordeal.  Their kit was specifically designed based on the tastes, preferences and interests of both Gabe and Lisa.

Gabe is now on day +8 of his transplant (8 days after stem cell infusion), with many more to go before being able to leave the hospital and continue recovery at home. We wish him and his family continued recovery and the end of Gabe's cancer journey.  They appreciate your support and prayers.

We will be continuing to work toward supporting other kids receiving cancer treatment at Kosair Children's Hospital. Your ongoing support of Hope From Harper make this and other programs benefiting pediatric cancer patients possible.