2021 Impact Report
Esther’s Friends was able to achieve a wide variety of goals in our efforts to help children, and families of children, facing long-term hospitalizations. Just as Esther’s condition was complicated and complex, the needs of the various hospitals were as well. Esther’s Friends provided the missing pieces that the hospitals - and children - needed. Instead of trying to fit a square support peg into a triangular shaped hospital hole, we talked, listened, and devised new and unique ways to serve the pediatric inpatient community throughout Chicagoland.
Thanks to the generous outpouring of support, Esther’s Friends partnered with:
Ann & Robert H. Lurie Children’s Hospital of Chicago to provide critical support by funding the position of Child Life Specialist in the Pediatric Intensive Care Unit (herein “PICU”) for one year, providing a parking pass for PICU families for the next four years, and donating 70 books for PICU inpatients to keep and take home;
Comer Children's Hospital (University of Chicago Medicine) to provide 250 comfort care kits to families in the PICU and Isolation Unit. These kits include basic hygiene materials, activity books, games, fuzzy socks, blankets, a journal, and now also include a meal voucher and parking pass;
Ann & Robert H. Lurie Children’s Hospital of Chicago
The Ann & Robert H. Lurie Children’s Hospital of Chicago is where Esther spent her hospitalizations. Thus, this was the first partnership Esther’s Friends developed. To see how far Esther’s Friends has come from the small beginnings with this hospital is truly remarkable.
To best highlight the impact of Esther’s Friends’ endeavors, below are two stories provided by the PICU:
“In July, Lurie Children’s admitted a 10-month old patient, Sean, with multiple medical diagnoses, including dysphagia, with a shunt and seizures. Sean had been in and out of the hospital since birth and this past year has been difficult for his family as they navigate through treatment. Sean’s mother is a single parent who traveled back and forth multiple times a day to take care of Sean’s older sibling and was severely financially impacted by hospitalization, as she could not work due to [Sean’s] admission and medical needs since birth. Sean requires respiratory support and was most calm and comfortable when held and rocked. When Sean was transitioned to the PICU, funds from Esther’s Friends allowed Lurie Children’s to provide a parking pass to help the family get by. The pass provided Sean’s mother with the ability to be present with him at the hospital and home with Sean’s sibling without the financial burden of parking. Sean was able to have as much parental support as possible at the bedside.”
Being with Esther was the most important thing to her parents. It was clearly the most important thing to Sean’s mother as well. When there is so much on a parent’s plate, the last thing that should be added is the financial burden of parking. This is especially true when a parent needs to come and go, as there are no in-and-out privileges in the hospital garages. Esther’s Friends is honored to take something off PICU parents’ already full plate by providing funds for a parking pass for PICU families for four years.
The second story begins:
“ [Further] the Esther Viola Frey Child Life Specialist provides critical support to our PICU patients by helping them navigate through their complex medical needs and providing emotional support. Charlie was a top priority for the Child Life Specialist since at the time that they met, she had complex medical needs, an unknown diagnosis and significant trauma history. The Child Life Specialist spent several weeks with Charlie providing procedural preparation and support, emotional processing, normalization (she loves to play UNO!) and collaborating with other services to provide communication support as her abilities changed throughout her admission. Much of their first encounters were focused around anxiety reduction as [Charlie] was intubated, awake, and scared. Through facilitation of coping strategies and endless support, she became so comfortable with her breathing tube. Just as we had with every other challenge, we talked [it] through …We got creative.”
Having the support of a dedicated Child Life Specialist made a difference in Charlie’s life, as well as the lives of all the patients the Child Life Specialist assists. They provide comfort, a diversion, and assistance navigating difficult situations. Supporting this position and providing these services continues to be a top priority for Esther’s Friends.
Esther’s Friends also provided 70 books for patients in the PICU. Many of these books were bilingual in order to help all who seek services at the hospital. Esther’s Friends wants all children to have the same opportunity to find a small diversion during their difficult time.
The total impact of this partnership continues to be felt throughout the PICU. It is the support that Esther’s Friends hoped we would be able to provide in memory of Esther.
Comer Children’s Hospital, University of Chicago Medicine
Esther's Friends donated 250 comfort care kits to the children and families in the PICU and Isolation Unit. That number is 100 percent of kits Comer distributed in 2020. These kits have always included basic hygiene materials, activity books, games, fuzzy socks, blankets, and a journal, but Esther's Friends' 2021 updated and improved kits now also include a meal voucher and parking pass.
While it is difficult to collect specific information on the families who receive the comfort care kits, due to the many privacy regulations in place, a current Child Life Specialist was able to provide the following story:
“I recently gave a kit to a PICU parent who had been in a terrible automobile collision. The parent was under unimaginable stress as one of the children had sustained serious head injuries. Can you imagine the stress of being in a car accident and then having your child in the PICU with life-threatening injuries? When [I] handed the caregiver the kit, it was as if some of the stress the parent was experiencing had been lifted. The parent hugged [me] and said that it was just what was needed as they had no personal items at the bedside. The comfort care kit is a great example of how much of a difference the small things can make. [Esther’s Friends] support has a tangible impact [on] these families’ lives at what is often a particularly daunting moment. With the recent surge at Comer, the [kits] have become increasingly important and your latest support will ensure even more families feel the impact.”
As the above quote highlights, these kits are vital not only to the children, but also the families. When Esther went to the doctor in March of 2020, her parents had no idea that she would be sent and admitted to the hospital, and so they didn't think to bring a toothbrush, deodorant, or any games for her. Her parents also didn't have any food with them and only then learned of how expensive these items were at the hospital.
While Esther’s parents were fortunate enough to have one parent stay with Esther, while the other was able to run home and grab a few necessities, many families, including those at Comer, are not. Fifty three percent of the families in Comer's service area live in poverty, which is almost double the state level. Nearly one in two households are at risk for food insecurity. While the Esther’s Friends community may not be able to physically be with these children and families, the comfort care kits are a meaningful gift and a hug from Esther.
Rainbow Animal Assisted Therapy
For those unfamiliar with the therapy dog program, Rainbow Animal Assisted Therapy is a volunteer organization that has been helping the community since 1987 by providing dog therapy services for those with mental, emotional, and physical disabilities throughout Chicagoland. Rainbow Animal Assisted Therapy dogs go through extremely rigorous obedience and therapy skills schooling before they are certified by the therapy dog program. In the children's hospital setting, therapy dogs have many benefits including easing depression, helping relieve pain, assisting patients to gain physical and emotional strength, and providing social simulation. The dogs play games with the children and offer love, adding joy to what can be difficult times.
Esther's Friends' therapy dog will visit children at Ann & Robert H. Lurie Children’s Hospital of Chicago. Having spent time in the hospital with Esther, her parents knew first-hand the impact of having visitors and a loving presence. It steadied her vitals; it calmed her; it made her smile. Knowing that hospitalized children will have a dog visitor to provide comfort and snuggles reminds us of all the hospital snuggles with Esther. It brings such joy to think of all the new friends our dog will make as she helps children to improve their health and quality of life.
In honor of our sweet Esther, Rainbow Animal Assisted Therapy has chosen to name our dog Dogwood's Viola d'Amore with a call name of Eva. She is very loving and amazingly shares the same March 20th birthday with Esther! Eva will begin her official therapy dog training after she turns one and has already graduated from puppy kindergarten. She is a whiz at puzzles and very well behaved. Esther’s Friends is very much looking forward to sharing her future milestones with all of you.
Rush University Children’s Hospital
Esther’s Friends was fortunate enough to provide 600 books for inpatients to keep and take home. These books were purchased through our literacy partnerships with both Scholastic and Penguin Random House. The age range of the inpatients who received books varied from toddler to young adult.
Esther truly loved books, so much so that her parents always made sure to include them as an important comfort item on her trips to the hospital. Thus, it was with great joy that Esther’s Friends was able to provide some of her favorite titles and themes - from Spot to princesses.
Books have a way to transport the reader to another time or place, which can be particularly helpful for pediatric inpatients. One patient was so appreciative of his Dog Man book that he could not believe he got to keep it:
“I can really take it home with me?!” he exclaimed with his eyes open so wide that they took up almost his entire face. “I never get to keep books like this. THANK YOU!” he told the Child Life Specialist who gave him the book.
The joy that that little boy, who was going through so much, felt at that moment has always been and continues to be Esther’s Friends’ goal - to transport him, if even for a moment, from what he is going through.
Loyola Medicine Children’s Hospital
Esther’s Friends has established the Esther Viola Frey Patient Support Fund at Loyola Medicine Children’s Hospital. This is the first dedicated patient support fund for pediatric inpatients at Loyola!
As this is the first dedicated patient support fund for pediatric inpatients, the Child Life team at Loyola is still gathering information and ascertaining the best ways to support children and families. However, below is a quote from the Child Life team manager:
“[To date], we have given out 21 meal vouchers for parents of children primarily under the age of 10. The trend for our peds floor seems to be that parents with children younger than 2 years old require meal vouchers due to the nature of not wanting to leave the hospital while their children are in the immediate care wing of the floor. There is more need than the 21 vouchers imply…I believe we will see an uptick in parents needing meal vouchers because [we] are seeing a number of respiratory conditions patients that are going to be here quite a bit longer in order to heal completely.”
Esther’s Friends is in frequent communication with the Loyola team to ensure that the needs of children and families are being met.
Advocate Children’s Hospital
This is Esther’s Friends newest partnership, as it was established at the end of 2021. Esther’s Friends is excited to provide 200 comfort care kits to inpatients. These kits will focus on books, games, and toys to help pass the long hours spent at the hospital.