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.

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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

Pete and Christy Dokken

A little over a year ago, I asked Pete and Christy Dokken if they would have lunch with me and let me pick their brains about the local real estate market. Med City Foundation’s board of directors was looking to expand lodging offerings to patients and I didn’t know where to start: Should we rent or buy? Should we look at single family homes or maybe a duplex?

I had called Pete about five years earlier after seeing his name on a large sign by Gibbs Elementary school in Rochester. My husband and I were thinking about moving but needed to sell our current home and figure out what we wanted to do next. It was a down market and so our house was losing value, but it seemed like an opportunity to upgrade.  Pete and Christy quickly became two people we spent more time talking and texting with than our own family. They coached us through letting go of the first home we had owned, and even got us through the purchase of our dream home, which wasn’t easy and took almost nine months (including poor Pete driving us all over Rochester to look at close to 30 or 40 homes…I lost track!) Kind of like your hair dresser, your real estate agent many times becomes a close friend in a short amount of time.

Christy and Pete are also landlords and after we brainstormed at lunch what our options would be, they offered to let Med City Foundation rent a home from them, on a month to month lease, so that we could experiment with having property. This was a low-risk way for us to test out property management and learn from our patients.

About nine months later we have learned something very critical: we need to have a house for our patients in stay in. There are other lodging options, such as hotels, extended stay hotels, and other non-profit or religious hospitality homes. However, what is currently lacking is the ability to give a family a home that is private, welcoming, and is their own.

The other critical take-away is the fact that many of these patients are not able to pay, or can pay very little. They are here for weeks, or even months, and during this time they are still supporting their real home, on little to no income while mounting medical bills pile up.

This home environment is so important, especially for families. Most children are not able to stay at the Hope Lodge or Gift of Life Transplant House, and the Ronald McDonald House allows children, if the child is the patient. But the young father with three children and a wife who want to stay together, have to look elsewhere. Even if these organizations did accept families, they are already over capacity. The Ronald McDonald house alone in Rochester turned away 1000 families in 2016!

We are so thankful to Pete and Christy for working with us, teaching me along the way, and allowing us to not just provide a home for these families, but also begin to look at what our focus needs to be. We are hopeful to find ourselves in a place to have more property in the future to continue this important service to patients and their families.

-Kristina

 

Dokken family
Pete, Christy, and their children.
Pete and Christy Dokken

Gift of Life Transplant House

Today is Ginger Holmes’ last day at the Gift of Life house as she celebrates her retirement. Med City Foundation is extremely grateful to her for her partnership and mentoring spirit over the last three years. We wish her all the best in her retirement! We are also thankful to have interviewed her this Spring for this blog to capture her spirit and dedication to Gift of Life Transplant house.

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Gift of Life Transplant House started collaborating with the Med City Foundation one and a half years ago, and have been working closely together ever since. The Gift of Life Transplant House was started 1984 by Edward Pompeian, a two-time kidney transplant recipient, as a small eight bedroom home. Since then Gift of Life Transplant House has had three additions, now with a total of 87 beds, making them the largest transplant home in the country.

They provide a homelike setting for transplant patients and their caregivers to stay in Rochester during the time of the transplant. Each guest receives their own room to share with one or two additional caregivers while living areas like the TV room, kitchen, and dining room are all shared. The patients are going through similar experiences, and the shared spaces encourage support between patients and families.

Perhaps the most important part of the Gift of Life Transplant House’s mission is the sense of family and community within the house. Guests are welcome to stay as long as they need, and have been known to stay anywhere from three days to over three years. No one is ever turned away from the house, and if all rooms are filled, the house works to find an alternative for the patient and caregivers to stay such as a hotel at a reduced rate.

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Although Gift of Life Transplant House historically only worked with organ transplant patients, they have recently expanded to welcome blood cancer patients to stay at their facilities if rooms are available. One of the biggest problems with blood cancer patients treatments is that they are long lasting causing many of these patients to be turned away from other housing options liked the Hope Lodge run by the American Cancer Society. Therefore, Gift of Life Transplant House opened their doors to them. Med City Foundation works closely with the transplant house to finding housing for the patients and their families when their locations are at capacity and vice versa.

In 2014, the Gift of Life Transplant House served 4,500 patients and their caregivers. In the next one and a half years, the transplant house is looking to expand and add approximately thirty new beds with additional kitchen, living room, and dining room spaces. The Med City Foundation and the Gift of Life Transplant House are committed to addressing the needs of blood cancer patients in Rochester area.

 

GOLGinger Holmes is the executive director of the Gift of Life Transplant House and oversees the operation of the home. She started as a volunteer at the Gift of Life Transplant House in 2010 and was then asked to serve on the board. In 2012, she was asked to be the executive director and has remained in that position ever since. Ginger says the best part of her job is seeing all the smiles from the patients and seeing their excitement when they get that call that they are getting a transplant.

 

 

Gift of Life Transplant House

Patient Stories: Aria

aria

Blood cancers not only affect the individuals diagnosed, but also their families, emotionally and financially. Aria’s story exemplifies this.

She lives in Minneapolis, Minnesota, with her husband and young son. Her husband was diagnosed with multiple myeloma and found out about Med City Foundation through a Mayo Clinic social worker. Med City Foundation provided Aria’s family with emotional and financial support through gas and grocery gift cards. Although her husband was the only one that had to endure the physical discomfort of the treatments, they all had the emotional and financial strain.

Aria and her family had to relocate to Rochester for 10 weeks during the time of her husband’s treatment in order to stay within a half hour of the hospital (a requirement the medical team insisted upon). The relocation had a large impact on her and her family, causing Aria to be the primary caregiver of her husband and their son, who turned eight years old during this time. Their son had to leave his home, friends, school, and activities to spend every day in a medical setting, which concerned Aria and her husband tremendously. In addition to being the caregiver, Aria had to take on the role of home schooling their son. Also, her step-daughter, currently attending graduate school, had to travel to see them, and she was not able to spend much time with her family as she also had obligations to school and work.

In addition to the emotional strain, there was also a financial burden. Aria and her husband both had to leave their jobs in Minneapolis because of the diagnosis. Med City Foundation was able to alleviate some of these financial worries by providing the family with grocery and gas gift cards, as well as including them in the holiday gift program, which provides families with Christmas gifts and is made possible because of generous donors. This program meant a lot to the family especially for their son because it showed that someone cared.  

Although it is difficult to give blanket advice due to different situations of every patient, Aria offered, “I would maybe encourage people to remember that this is only a chapter of your life and hopefully you’ll be going home and getting back to what you enjoy soon.”

 

Patient Stories: Aria

Students Share Stories of Patients and Those Supporting Patients

About twice a year my mom, and fellow board member, approaches me to work with students at the University of Minnesota-Rochester through their Co-Lab class. This unique class partners students with local organizations to complete projects throughout a semester. In previously, groups have helped me to create a community guide for patients and their family members as well as developing the blueprint for a volunteer program.

When mom approached me around Christmas to participate in the upcoming term I said “NO!” I didn’t have time to devote to the students and was juggling amount a million other things. However, in true “mom” form, she continued to pursue it and eventually I gave in. She had an idea that was interesting and so I thought we should give it a try.

Fast forward several months and I am sitting down with four young women, brainstorming on this great project idea. What they were planning on doing was creating a volume of blog posts, not just to talk about Med City Foundation, but about the patients, their families, and the experience of being in Rochester for care. They decided they also wanted to talk to other organizations to hear how they were serving patients.

The end result? Amazing. I am not generally a woman of few words, but I don’t have much more to say than that.

Meet McKenzie, Julie, Maggie, and Kristie. Over the next several months, their interviews will be shared on this blog so that you too can experience these patient’s lives and those trying so hard to support them.

 

UMR students

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Students Share Stories of Patients and Those Supporting Patients