Beach House for Immunocompromised Children
ANNA’S PALS
Thanks to Individuals like Yourself. . .
Each day we are One Step Closer to Realizing our Goal of Providing Children who have received a Bone Marrow Transplant a safe place to mingle and have contact with friends and family.
Did You Know. . ?
Pediatric oncology patients who have received a Bone Marrow Transplant are released from the hospital with an extraordinary amount of restrictions on top of the incredible schedule of medications and follow-up appointments.
The road to recovery is long and arduous, and these patients don’t have the ability to be around other children or extended family. The walls of the hospital have changed to the walls of their homes, but they are still confined and isolated from the outside world.
This isolation often leads to depression which inevitably slows the healing process.
Dr. Christine Duncan (Senior Physician, Assistant Professor of Pediatrics, Harvard Medical School, Medical Director of Clinical Research and Clinical Development, Gene Therapy Program, Boston Children's Hospital) treated our daughter, Anna, when she required a bone marrow transplant. Duncan said the therapy leaves patients terribly vulnerable.
“It gets rid of your body’s immune system to fight any sort of infection, because of that, we don’t let kids interact with the rest of the world for a period of time.”
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Providing a Safe Escape for Immunocompromised Kids.
Any child who receives a BMT, or another organ transplant, is prescribed immunosuppressants. These medications keep the body from rejecting the new organs or bone marrow, and it keeps the patient’s ANC (Absolute Neutrophil Count) well below 500 for months, and sometimes years. This makes patients extremely susceptible to life-threatening infections.
As a result, pediatric patients are hospitalized until their ANC reaches 200. Once that happens and they’re able to be discharged, they must remain isolated from the outside world until their ANC reaches 500.
The Pal House would consist of individual apartments, or as we’ll call them, “cottages”, specifically designed to meet the needs of these fragile patients. They would be constructed with mold and mildew resistant materials, have air filtration systems, and would be wheelchair accessible. This setting would allow time for family bonding and give immunocompromised kids the opportunity to mingle with others in a safe and health-need conscious environment.
At this time, Anna’s Pals is the only organization working towards creating this type of safe environment for immunocompromised children. In the United States, there isn’t an organization that provides the service we are looking to provide. To date, no similar facility exists.
We firmly believe that these fragile patients need a safe environment, away from the clinics and hospitals, to bond with family and friends. With your help, we can construct a beach house made for these children, a place for these kids to be kids, where they can not only improve their health but also improve their morale and mindset.
A healthy mind leads to a healthy body.
“Out of the 12 families we met in the hospital, only 3 had a positive outcome.”
“How Can I Help?”
Think of the isolation you’ve experienced due to COVID.
Now imagine that was your normal life.
No visitors. No going outside. No risking a chance encounter with bacteria or a virus. Imagine that your life depended on your complete isolation. This is what life looks like for someone who has had a Bone Marrow Transplant (BMT).
Barbara Degar, MD (Attending Physician Department of Pediatric Oncology Boston Children’s Hospital Assistant Professor of Pediatrics Harvard Medical School) explains in detail:
“Kids like Anna are required to spend countless days and nights in the hospital.
When they are not in the hospital, they must still comply with many restrictions to minimize their risk of serious infections and complications. This is an extremely isolating experience for patients, siblings, and parents. Exposures that are routine for others, such as to individuals outside of their immediate family, to mold in the physical environment, to contaminants in food, have the potential to be life-threatening.
The requirements are not always obvious or intuitive. It is simply not possible to expect any setting that is not expressly designed or modified for this purpose to maintain the required level of cleanliness and control.”
We are looking for individuals to help us realize our goal of creating this safe space in order to allow children a chance to live some semblance of a normal life as they recuperate from their transplant. You can learn more about the details and specific phases of this project by visiting our Beach House Page.
Please help us reach our goal by donating to our cause using the link below.
Our Inspiration: Anna’s Story
Anna Jerome was a very happy, friendly, and smart girl. She was a daughter, a twin, a big sister, a cousin, a student, an athlete, a band member, and a friend.
When she received her diagnosis of AML, an aggressive form of Leukemia, the summer before her freshman year at Boston Latin school, the whole community was shaken. Anna enjoyed shopping, music, and going to Patriot games with her "padre." But most of all, she loved the beach. Her favorite places to visit were the Cape with her cousins or Myrtle Beach with her family.
Anna loved life and especially loved going out and enjoying every single day, regardless of where she was or what she was doing. She was incredibly kind and thoughtful. After Anna's first round of treatment and achieving remission, her doctors told her that she was eligible for Make-A-Wish. She declined, stating that she was already fortunate and the Wish should be offered to someone who really needed it.
As the process of treating Anna progressed, she stopped being able to have friends in the house. If she had visitors, they had to be outside. After five straight months of being stuck in the hospital, she would have been overjoyed to have a place for her to gather with friends. As a teenager, having access to friends and the socialization they bring are SO important! These kids can’t even use public bathrooms, which really limits their ability to stray too far from home.
Anna was not an only child. Her illness had an impact on her siblings as well. They, too, had to be isolated and weren’t allowed to have friends over. If they went with others, they had to be sure the friends were virus-free. Emily and Will had to sanitize their hands every time they walked in the door. We didn’t have towels in the kitchen or the bathroom. All of our fresh fruits and vegetables had to be local, and this severely limited the types of foods that were available. These illnesses and the resulting treatments affect entire families.
Fortunately, Anna had a really strong friend group, frequently referred to as “the Pals,” who visited her every day they could at the hospital. The Pals were such a presence that the nurses referred to Anna's room as the Party Room. When she received her Bone Marrow Transplant, however, those visits had to end. Her immune system was wiped out, and because of that, her friends could only briefly come in, one at a time. Once she was from the hospital, we were only allowed to let our immediate family into the house.
It’s based on this powerful experience and the effect we saw it have on our daughter that drives us to continue pushing toward our goal of building a dedicated and safe beach house for immunocompromised patients. We would love to give these children a place outside of the clinical setting to gather with family and friends.
Everyone should always be in a Party Room surrounded by Pals.
Support Services
Anna had a heart for others.
When given the chance to participate in Make-a-Wish, she politely declined and said that the opportunity should go to some other child in need.
Her generous and kind-hearted spirit inspired us to begin giving to others as much as we could. As a result, we’ve been implementing programs for the immunocompromised community, beginning with Boston Children’s Hospital, for nine years now in her memory.
Each month we deliver 100 Chinese Food meals to the Leukemia/Lymphoma floor at Boston Children’s Hospital. During the month of December we host a gingerbread house kit drive. These kits are delivered to Boston area hospitals, providing a distraction from the treatment. We gather kid-friendly comfort supplies for the local pediatric hospitals, and we look for every opportunity to support others in their charity drives, especially when they are focused on supporting the pediatric community.
Use the links below to learn more about how you can contribute to our endeavors.
DONATE ITEMS TO OUR CAUSE
We are always looking for kid comfort items to deliver to the area pediatric hospitals, such as Child-friendly sheets, Snacks, Bedside distractions, Cookie Kits, Funded Enrichment Programs, and Gingerbread House Kits.
SCHEDULE/HOST A CHARITY/FUND DRIVE
If you’re looking for a valuable community service activity for your child to participate in or for your school, church, or other organization to contribute to, consider hosting a drive to further our cause. Back-to-School Drive or Gingerbread House Drive
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