Caring Connections: A Pilot Study in Caring

“Where can I stay for four months that will accommodate my spouse and our three small children?”

“Can I park my car on the streets overnight or do I have to move my car in the evening?”

“I need groceries but don’t have a vehicle here, does anywhere deliver or offer a shuttle?”

“We need to enroll our daughter in preschool while we are here to keep her busy, how do we do that?”

“Its my son’s birthday, what can we do for a thirteen year old to make him special during all of this?”

“We live in town, but the workload at home is too much. I haven’t even mowed the lawn in over a month.”

“I am trying to work remotely while my wife gets treatment but the Wi-Fii at the hospital is too slow. Is there somewhere else downtown I can go to work for a few hours?”

“Today we found out my husband won’t live much longer, I want someone to take pictures of him with the kids, do you know someone that can do that with such short notice?”

These are just a small snapshot of the questions and comments Med City Foundation intake volunteers hear while talking to patients. These patients are referred to us for various reasons, financial and lodging concerns are the most common, but additional concerns and questions almost always come up. Due to the increase in referrals and complex questions from patients, our volunteers in the office were feeling like there was more we should do after our initial phone call.

Enter board members Virginia Wright-Peterson, Laura Dusso, and advisory board members, Thom Nustad and Carole Stiles. These four individuals, with various backgrounds as a  therapist, pastor, social worker, and family member of a blood cancer patient, sat down, committed to finding a way to meet the growing needs of our patients.

Taking lead from other organizations that already do this so well, such as Season’s Hospice in Rochester, this hard working foursome developed a pilot program that will match volunteers with patients and their family. These volunteers, Caring Connections volunteers as we are now fondly referring to them, can stay in touch and help individuals and families navigate the community or assist in other ways depending on their needs. Sometime that can include light household chores, running errands, or just helping to troubleshoot situations as they arise.

“Our Caring Connections Volunteers can help provide respite care, staying with the patient for up to a few hours, so caregivers can take time to run errands or take a break. Or they may  just check-in routinely to remind the family that we are here and can help when they need it. ” Virginia explained while introducing the program to other board members.

After unanimously approving the new program, Med City Foundation board members expressed being hopeful this pilot will expand and by this winter could potentially be able to bring on more volunteers and reach more patients.

Thank you to our volunteers and board members for being such amazing advocates for the patients we are committed to serve!

 

 

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Caring Connections: A Pilot Study in Caring

A word of thanks….

The following letter was sent to our office from a patient who recently received financial assistance from Med City Foundation:

A special thanks to all the donors of Med City Foundation. Your generous grant to us came at a very opportune time, as we were, in addition to medical expenses, trying to find a resource for day to day needs for housing and food, which can be quite a burden. We have been at Mayo Clinic since August 2nd, 2017. In that time, we have had a 10 day break, a 7 day break, and a couple of weekends over the holidays. L.’s journey to bone barrow transplant for Acute Myeloid Leukemia began with day 0 being January 19th 2018. She had an unrelated international donor, so recovery is typically 100 days with many follow up appointments in the future. We are blessed to have an organization like yours to lend a helping hand. We are from Iowa, and hope to be home for Memorial Day.

Thank you so much for your support!

-M.Z., Whitemore Iowa

This is such a warm reminder of why our work is so important and who it impacts!

A word of thanks….

Broadway Plaza: A Home Away From Home

Earlier this summer, we received an amazing donation: an apartment! Broadway Plaza, located on Broadway Ave in Rochester, was willing to donate a two bedroom, unfurnished apartment for one full year. Our amazing volunteers and supporters rallied and furnished the apartment in no time! Not only does this space provide a place for families to stay, it provides the conveniences of being directly downtown. Guests are able to take the Skyway and Subway systems to and from the Methodist campus, ensuring that they are able to reach care when needed, no matter what time of day or night.

In addition to the apartment, Broadway Plaza offers a swimming pool and workout facility for family members, which helps greatly with the boredom that can come with long visits to Rochester.

Many people ask, “why do these patients have to stay so long?” and “why can’t they stay at one of the other hospitality homes in town?”  Well ,here are the bullet points of why the Broadway Plaza apartment donation is so critical to our patients:

  1. Blood cancer patients frequently require stem cell or bone marrow transplants which require a 6-8 week minimum stay in Rochester
  2. Patients not receiving a transplant are often here for even longer time periods while they under go complicated chemotherapy regimens that many hospitals across the nation do not offer. These regimens combine inpatient and outpatient hospital stays, but even when outpatient, patients must be able to reach the Methodist campus within 20-30 minutes in case of fevers or other complications.
  3. We have many wonderful hospitality homes in Rochester such as the Gift of Life Transplant House and Hope Lodge, in addition to the Ronald McDonald House for pediatric patients. However, when the parent is the patient, these homes are not able to accommodate families and allow them to stay together during treatment.
  4. Many of the hospitably homes in Rochester are full, beyond capacity, and therefore are not able to provide complimentary lodging to hundreds of patients each year

Honestly, I could continue this list and make it even longer, but I think you understand. The gift that Broadway Plaza has given to our patients is much more than a donation of space, it is a home away from home.

 

Broadway Plaza: A Home Away From Home

From donor to board member…

The newest addition to the Med City Foundation board, Derrick Chapman, does not work in the health field, but rather owns a food truck! He owns and operates The Twisted Barrel Pizza Truck in Rochester. He became involved with the board when a current member of the Med City Foundation heard that Derrick had an with experience donating bone marrow. Though he is not currently working in the medical or health field, through Med City Foundation, he has direct experience working with blood cancer patients and their families and is able to help to impact and improve their lives through the work the foundation does.

Derrick was already donating blood and platelets, when he first decided that he would join the bone marrow registry through Be the Match. In order to join the registry, he took an online questionnaire and sent a cheek swab through the mail to the registry to wait for a match. Derrick waited for a year and a half until he was found as a match for a cancer patient. He called immediately after being notified he was a match, surprising the caller, and the process began. The entire donation process takes approximately 20-30 hours over a 4-6 week period of time, not including travel time, while about 40% of donors travel during their donation. To ensure Derrick was in prime health, he underwent three blood draws, an electrocardiogram, a chest x-ray, and physical before he was able to donate bone marrow. It took approximately three weeks to recover from the procedure and feel normal again, but Derrick says that the temporary pain and fatigue that he feels when he gives bone marrow is nothing compared to what the cancer patients go through during their rounds of chemotherapy and transplants.

Throughout the time of his donation, and after, Derrick shared his experience on Facebook in hopes that more people would join the Be the Match registry. Through Facebook, he knows of twelve more people who joined the bone marrow registry through his advocacy. Doctors search the registry for matches for their patients based on a component of DNA called human leukocyte antigen (HLA) markers. Since HLA markers are very specific to each individual, it can be difficult to find a life saving match for blood cancer patients, which is why the registry is constantly looking for more donors. In fact, the likelihood of an individual being selected as a marrow match is 1 in 430, so the more selection on Be the Match, the better.

Derrick’s wife is also a donor. After hearing that a friend in need was in desperate need for a kidney, she went in to see if she was a match. Finding out she was not a match for her friend, she was able to donate her kidney to another patient, resulting in her friend being bumped to the top of the donor list, and she was able to receive her kidney! Derrick says that his family, his wife and three daughters, are a motivation for him, and Derrick hopes that if he were to ever need a bone marrow transplant or an organ transplant, those resources would be there for him.

Derrick says that the most difficult part of working with the Med City Foundation is having to say no to families in need because of a lack of financial resources. He  is excited to see how the Med City Foundation can continue to grow and expand to help those blood cancer patients in need of support. In addition, he enjoys working with the Med City Foundation because he knows that he is helping an individual and a family work through a very difficult time and he loves helping and supporting patients and their families.

derrick

From donor to board member…

Provider and Supporter: Jennie Goble

 

jennieJennie Goble has been a physician assistant (PA) in hematology at Mayo Clinic for seven years. She is also a current board member for the Med City Foundation. Jennie discovered the Med City Foundation about a year ago through her work at Mayo Clinic in the hematology unit, where many of the blood cancer patients receive their chemotherapy treatments. Currently, there is a total of 22 rooms on the hematology floor, two of which are dedicated solely to outpatient rooms. For an acute leukemia patient, the typical treatment is a month of inpatient treatment followed by 12-16 weeks of chemotherapy where the patient flips back and forth between inpatient and outpatient care rapidly. Due to the quickly changing environments, the unit tries to keep the care as consistent as possible with the same nursing staff and room. The unit also has their own pharmacist and schedulers to coordinate outpatient treatment.

The rapid flipping of inpatient to outpatient treatment is a strain on many families because of housing. Being an outpatient has many benefits as this helps the patients eat more and be more active in addition to limiting their chances of infection. This is where Jennie’s connection with the Med City Foundation comes into play. When patients are struggling with finding a place to stay during outpatient treatment or they just need a little help, she is the first to refer them to the Med City Foundation. Jennie has the insight to be able to clearly articulate the needs of the patients and bring these needs to the Med City Foundation. Jennie states that a key to success is providing support to families as well as the patient, and she thinks that is one of the best features of the Med City Foundation because they focus on the needs of the whole family. Whether it is providing housing that encompasses an entire family so kids are not separated from their parents or doing small things like providing grocery or gas gift cards.

Jennie says the most rewarding part of her job is the patient care itself. She realizes this is just her job, but to the family, this a critical time in their lives, and she wants to be able to support them through their journey. Even if a patient’s cancer journey ends in death, Jennie believes it is not a failure if that patient was loved and supported.

Provider and Supporter: Jennie Goble

Brighter Tomorrows

Currently, one of the collaborative relationships Med City Foundation has in Rochester is with Brighter Tomorrows. One of the primary benefits from this relationship is using each other for referrals. If someone contacts the Med City Foundation with a child who has cancer, they are referred to Brighter Tomorrows and if someone over 21 years old contacts Brighter Tomorrows, they are referred to the Med City Foundation. The Med City Foundation’s annual Holiday Drive is also opened to Brighter Tomorrows so parents who are seeking help from Brighter Tomorrows can pick up toys and gifts for their children. In this blog post, we’ll look into Brighter Tomorrows and the work the organization does in the Rochester community.

In 1998, Sherrie Decker’s daughter, Shanna, was hospitalized for a year with bone cancer.

This bone cancer led to an eventual leg amputation and lung removal. Shanna is a survivor, and now is living a happy and fulfilling life, but not all cancer patients have the same fate. Over the years, Sherrie met other families in the community struggling with cancer and the burdens that come with the diagnosis. Sherrie and three other mothers who had children with cancer banded together in 2007 and founded Brighter Tomorrows. Brighter Tomorrows is a non-profit organization and is located in Rochester Minnesota.  Brighter Tomorrows works to provide emotional, spiritual, and educational support by listening to, understanding, and supporting families touched by childhood cancer.

Currently, Sherrie Decker and Liz Canan, two of the original founding members are still involved with Brighter Tomorrows. Sherrie was the president of the organization for four years until she stepped down, leaving Liz Canan as the current president. The board consists of eight members, seven voting members and one advisory full-time undergraduate who had childhood cancer. Sherrie emphasizes that each member of the board has unique talents and skills that they bring to the organization which causes it to thrive.

sherrieSherrie works in family-to-family relations and is able to interact first-hand with individuals as soon as families find out their child is diagnosed with cancer. The brochure for Brighter Tomorrows is the first thing the family sees in the Mayo Clinic packet of information that their physician hands them upon diagnosis. The physician tells them to call Brighter Tomorrows for support, or sometimes the physician will notify Brighter Tomorrows on behalf of the family. When Sherrie receives the call, she immediately goes to meet the family, whether it is at a hotel, the Rochester Ronald McDonald House, the clinic or hospital. She brings a Family Care Kit for them which consists of a soft sided cooler designed to transport medications which need to be kept cool, snacks, gas and grocery gift cards, essential toiletries, parking passes, and some other helpful items. Sherrie mentions that many times, a family comes to Rochester for an appointment, but after the cancer diagnosis, they have to stay for a few weeks or months for treatment. The Family Care Kit helps to alleviate some of the initial burden and stress the family might feel. Since Sherrie has a child who had cancer, she understands the process and how surprising and frightening it can be for families, so she says her main role is to provide comfort, support, and a listening ear. Sherrie says that being a resource and always being present for the family is one of the most rewarding parts of her position at Brighter Tomorrows, and it is so meaningful that she is able to provide comfort to newly diagnosed children and families.

Brighter Tomorrows not only provides Family Care Kits during that devastating first week of the diagnosis, but also plans activities and monthly meetings for the members of Brighter Tomorrows. Sherrie estimates about seventy to one hundred individuals attend the monthly meetings where the children are able to be together and participate in activities while parents are able to talk to one another and speak with professionals. Brighter Tomorrows also puts on events for the children, such as bowling, movie nights, and a yearly retreat for a few days which are all free of charge to foster the relationships between the children and their families. Perhaps the best part is that Brighter Tomorrows stays with the family, providing resources, from diagnosis through remission, providing as many resources as possible.

In terms of growth, Brighter Tomorrows plans on expanding their current program entitled “Tomorrow’s Chapter,” which focuses on families who have lost their child to cancer. In addition, they plan to provide free family and marital counseling for families. The financial burden can become so great that counseling is out of reach for these families. Finally, Sherrie plans on helping Brighter Tomorrows create a branch of the organization dedicated entirely to the siblings of the child with cancer. Sherrie says that siblings are often times forgotten or receive little attention due to the chaos of their sibling’s hospital visits, transplants, surgeries, and treatments. Brighter Tomorrows plans on creating a division focusing specifically on siblings and how they feel and where all of the attention is put on them. Through these expansions, Brighter Tomorrows hopes to continue their mission of providing support to children with cancer and their families and demonstrate care and understanding to those individuals.

 

You can learn more about Brighter Tomorrows on their website: http://brightertomorrowshope.org/

 

Brighter Tomorrows

Patient Profile: Sandy

In September of 2011, Sandy went for a regular check up at the Mayo Clinic, but she came back with news that would drastically change her life.  She was diagnosed with stage 3 multiple myeloma with damage to her kidneys. In addition, 70% of her plasma cells were affected and she was in renal failure. Her medical team at Mayo put her on chemotherapy four days a week through September and October.  After October, she continued with the chemotherapy once a week until April 27th, 2012 when she received a stem cell transplant. Before her diagnosis, she did notice more fatigue, bruising, and colds, but she thought it was part of getting older, working at her job cleaning houses, and taking care of her mother who was sick at the time.  If she would have gone in a couple weeks later, the doctors told her she would have had a very different outcome.

Even though Sandy lives close to Mayo Clinic in Zumbro Falls, the multiple appointments daily led her and her family to seek housing in Rochester. Affordable housing, Sandy said, was difficult to find in Rochester.  At the time, she was unaware of Med City Foundation and the services and support that they are able to provide for blood cancer patients.  Sandy and her daughter, who was her caregiver during her treatment, found a room at the Samaritan Bethany Nursing Home in their caregiver suite. In this space, her daughter slept on a blow-up mattress in the living room while Sandy slept in the only bed.

 

 It was not until Sandsandyy’s daughter came across a Facebook post of Med City Foundation asking for stories of patients, that they became aware of what Med City provides.  Sandy remembers how hard it was for her and her family to find a housing option that was right for them, and she wishes she would have known about Med City.  She says there is a need for organizations like Med City Foundation because there are many patients coming from all over to the Mayo Clinic that need this type of housing for different periods of time and the many unknowns of cancer.  From this difficult time, Sandy advises other patients to trying to keep a positive attitude during this very challenging time, take one day at a time, and look for support in places you may not know it exists. She is now on maintenance chemotherapy every other week since her transplant and maintains her optimistic and grateful attitude.

Patient Profile: Sandy