Saunder's Story | Blood Warrior & Cancer Survivor

A current photo of Saunder, age 16.

Meet Saunder!

Since 2015, PAB’S has had the privilege to meet and stay in-contact with so many incredible teens. One such teen is Saunder Strong, who was diagnosed with with Acute Lymphoblastic Leukemia in 2015. He received a PAB’S PACK at the start of his extensive treatment, and has kept in close contact with PAB’S. We are so happy to be able to congratulate Saunder for completing his treatment for ALL in November after a three year journey.

Now 16 years old, Saunder graciously shares his story with us.

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On August 10th, 2015 I heard the words that would change my day-to-day way of living for the next few years and shape the person I am for a lifetime.

While chemotherapy caused much of his hair due to chemotherapy, he clung to a single tuft that reminded him of his strength and resistance.

I was diagnosed with Acute Lymphoblastic Leukemia just before I turned 13. As my classmates began their 7th grade year of school, I began daily rounds of chemotherapy and regular hospitalizations. Setbacks and losses accumulated  - freedom, mobility, memory, days, weeks, months…. I was unable to rejoin my classmates until 8th grade. When I did, I was not the person I was prior to diagnosis. My personality and lens on life had changed— not to mention my physical appearance. I hung on to a tuft of hair that I combed over my mostly bald head for as long as I could— clinging to the one feature that hadn’t been taken from me yet. Osteonecrosis (death of bone tissue due to a lack of blood supply) and Neuropathy (weakness and pain from nerve damage) set in, and with them came more restrictions. Ultimately, many of my friends drifted away as hobbies and pastimes were forced to change due to limitations. Cancer nightmares shook me out of my sleep, and still today I receive therapy to rebuild my body, mind, and spirit post the life-impacting ordeal.

Saunder during treatment, posing with the family dog at home.

I completed my treatment for ALL just over a month ago on November 30, 2018. I’m now 16. While there were many dark days in my 3.5 years of treatment for Leukemia, and I continue to navigate the impact of such a stressful time in my life, there are also bright spots. Many of these bright spots continue to impact me today and play out positively in my daily life.

Pia and Abbie shed the first light on a community that I never knew existed until I received a PAB’S Pack. The pack was filled with comforting gifts and I knew that this organization got it. These people get my life. From a mutual friend, I learned more about their incredible story and the personal journeys that led Pia and Abbie to found PAB’S PACKS. PAB’S PACKS sympathizes with a community of young people navigating similar hardships,  allowing them to find calm and care in creature comforts… a blanket, chapstick, a stress ball, and the PAB’S penguin.  I used everything in my pack (I even got my hands on an extra stress ball which was seriously worked over during every chemo treatment in my port and my spine).

Learning about Abby and Pia and their story from our mutual friend was my first exposure to other teens who are navigating the tough challenges of a life-threatening diagnosis. I eventually was able to meet Pia and Abby in-person, and my stigma about forming friendships with other ill teens was quickly proved incorrect. They showed me that hanging with other ill teens with doesn’t mean you sit around and talk about your illness and treatment. The connection was immediate. Since meeting Pia and Abby, my relationships and my community have changed. I have became a part of a community of the most incredible, resilient, big-hearted teenagers I could ever hope to know and learn from. The friendship bond is easily formed and connection is instant, because the road that leads you to each other is as similar and familiar as it is different. For me, this connection is ultimately what PAB’S PACKS is about: comfort, care, and connection.

Saunder and his family on vacation.

“...I knew that this organization got it. These people get my life. ”

— Saunder

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Saunder appeared in our video in August of 2017, and has always updated us about his treatments. We are so thankful for the incredibly engaged and empathetic person he is. Now at the end of his fight, Saunder is determined to give back even more than he already has. He is currently competing to be the Minnesota Student of the Year with the Leukemia and Lymphoma foundation. He has the goal of raising $50,000 by February 26th to name a research grant after his friend Christian Larson, who passed away in September from cancer, and bring more attention to blood cancers. Click the link below to donate and learn more about his campaign.

Click here to check out Saunder’s LLS Student of the Year Campaign!

Thanks for always having our back, and the backs of so many other chronically-ill teens, Saunder! We’ve got your back. Blood warriors!

Love,

The PAB’S Team

Child Life Perspective: The Impact of a PAB'S PACK

Reflections of Child Life SpecialistS

The 2018-2019 Teen Board at the MN Wild Game in November

As 2018 draws to a close, the PAB’S team is looking back at a monumental year. Pia and Abbie were awarded the prestigious Jefferson Award, and PAB’S was the November MN Wild Charity of the Month. The teen board program was pioneered, and 8 wonderful teens have been able to learn an immense amount about running a nonprofit and giving back. Most importantly, PAB’S was able to provide 2,505 packs to teen across the United States, Canada and Haiti, and established new partnerships with 14 hospitals and camps.

These partnerships would not be possible without the many wonderful Child Life Specialists who work so hard to help teens feel comfortable and appreciated during their hospital stays. These specialists facilitate our visits, take us room to room, and are always conscientious and caring. When PAB’S PACKS isn’t able to be present, our partnering Child Life departments handout our packs on our behalf, ensuring the teens who need them most receive them. During this time, these specialists become our spokespeople, helping to spread our mission.

We are so thankful for these specialists, and all of the energy they spend making our handouts possible. In turn, we asked many of these specialists why they were grateful for PAB’S. Here is what they had to say:

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Diane Morales, Child Life Specialist at Nicklaus Children’s Health System in Miami, Florida, describes the impact on a teen and a family when they receive a PAB’S PACK: “Giving out PAB’S Packs is definitely a rewarding experience – after every pack I give out I feel like calling Pia and Abbie myself to thank them for the tremendous impact they made! Even with some of the most anxious patients, providing a PAB’S PACK brings a notable sense of relief and serves as a great ice breaker. I’ve even had a mother cry because of how thankful she was as I gave a PAB’S PACK to her daughter prior to surgery. Her daughter, who had mumbled and avoided eye contact with me during the start of my visit, was smiling from ear to ear and talking up a storm after I gave her her PAB’S PACK. I was then able to better connect with her and provide emotional support and procedural teaching to her prior to her procedure; all thanks to Pia and Abbie (and the ultra-soft penguin inside)!”

We focus a tremendous amount on the immediate care and comfort that our packs bring to teens, because that’s the part that we see most often. But, as Diane points out, our packs impact kids long after we give them.

Child Life Specialists at Masonic Children’s Hospital of the University of Minnesota

Amy Wynia, Child Life Specialist at Masonic Children’s Hospital of the University of Minnesota spoke about this lasting impact as well. “Providing the PAB’S PACKS is a rewarding experience because it not only provides a tangible bag of comfort, it gives the message that self-care is important- that THEY are important.  I provided a pack to a teen girl just prior to a sedated procedure. She was tearful, scared to have her procedure. We talked about her worries as she explored the PAB’S PACK She commented that she could use the journal to write down her fears, the blanket to cover up and feel safe. She then used the penguin for medical play, letting the penguin be her twin – complete with an IV, just like her.  The PAB’S PACK not only provided comfort, it was a tool for educating and exploring feelings” she explains.

The addition, our teen board has also had a profound impact on the teens that we serve. With each handout event, we are able to have at least two teen ambassadors present, connecting with teens and giving them their new pack. Jessica Koppelman, Child Life Specialist at Mayo Clinic, shares “I get many comments from parents following teen ambassador visits on how big of an impact they made on their child and how they want to give back in some way as well.”

This want to give back is so inspiring. That’s the need that prompted Pia and Abbie to make a change, and it’s what keeps us going today. The more teens that are empowered, feel connected to other teens and know that they are loved and valued, means that even more teens can feel the same.

Diane concluded,  “I think it’s inspiring for my teenage patients to see concrete proof that nothing can stop you from reaching your dreams and helping others – not even health concerns. PAB’S PACKS definitely inspire hope amongst my teenage patients.”

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Happy Holidays.
Love,

The PAB’S Team

Lauren's Story | The Impact of "We've Got Your Back!"

Lauren posted this photo on Instagram when she announced her diagnosis to family and friends.

Meet Lauren!

Lauren is a junior at The Blake School in Minneapolis where she is known for making others laugh and being friendly to everyone. She is on the soccer team and also involved in The National Charity league with her mom. In her free time, Lauren enjoys swimming and spending time with her older brothers, as well as going to sporting events.

In the summer before her junior year, she was diagnosed with Hodgkin's Lymphoma, Stage IIA—the same diagnosis as Pia, our co-founder. Even before Lauren started treatment,  she and Pia were in contact The support she received from Pia, along with her community of friends and family, has made it possible for her to see her diagnosis as a crucial part in becoming the person she is meant to be.

On Give to the Max Day, Lauren shares her story with us.

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Lauren with her parents after being pulled up to play varsity soccer in ninth grade.

“I was just recently diagnosed with 2A Hodgkin's Lymphoma on August 29, 2018.  It was a long and complicated road to my diagnosis, but looking back, it is so obvious to me that there had been a multitude of signs that something was not working correctly in my body.

First, marble-size lumps appeared last fall all around the base of my neck, and I had had a persistent sinus infection but everyone had thought that the lumps were merely swollen lymph nodes. When I went in to see a doctor in December, I was told to come back if there was growth. Another sign was that I was constantly tired, but I figured I wasn’t getting enough sleep as a teenager and dismissed it. And when I could no longer perform at a high intensity at soccer, I just assumed I was out of shape.

But the lumps continued to aggravate me. Finally, in July, I could no longer sleep on my chest and struggled to move my neck without extreme discomfort, prompting me to uncover what was truly wrong with me. The diagnosis process took the whole month of August. I got a biopsy which took out some cells in a lymph node, it came back inconclusive. Next, they proceeded to take a full lymph node out which also came back inconclusive.

“Knowing Pia had had the exact same type of cancer I have was like finding the ultimate cheat sheet. ”

— Lauren

Lauren’s scan, the yellow is the largest of the three tumors in her chest.

After these inconclusive tests, my first doctor transferred me to Children’s hospital so they could do more specific testing. I was transferred to the Oncology department and got multiple scans. After seeing my scans, my new doctor at Children’s, Dr. Susan Sencer, told me that there were three masses. My symptoms and age made her believe that I had Hodgkin’s Lymphoma. This could only be verified through taking a biopsy of one of the masses.

Two days after surgery, my family and I had a meeting with Doctor Sencer. I still believed this whole situation to be a fluke, I was prepared for her to tell me that they had made a mistake. In my mind, I did not feel or look like someone who had cancer. I sat in the waiting room and repeated my statement of denial in my head over and over; I could not possibly be sick. Dr. Sencer explained what the next few months of chemo would look like and my good prognosis.

When first thinking about cancer, my mind when straight to Pia Phillips. She was a recent graduate of Blake, and the founder of PAB’S PACKS. Knowing Pia had had the exact same type of cancer I have was like finding the ultimate cheat sheet. I had so many questions that could really only be answered by someone that has had cancer.

Within a day of my diagnosis, Pia reached out to me. We met that week, before she left for college. Sitting in the coffee shop with Pia, I could immediately tell that her experience with cancer was vastly different than everything I had been told up until that point. Talking with her completely changed my thinking around my diagnosis. Before our conversation, the majority of people were telling me how sorry they were for me, which is completely valid and was also my initial reaction to my diagnosis. My most memorable anecdote from our first conversation was her telling me that she had grown more in those four month of treatment than she had ever in her entire life. She convinced me that these next few months would not be putting my life on pause, but rather, a crucial part in becoming the person I am meant to be.”

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In her Instagram post telling family and friends about her diagnosis, Lauren wrote “I know that this is a chapter that I am supposed to go through in becoming the person I am meant to be, but I’m still me. I’m still the same girl that loves to mess around and laugh. Please remember that.”

Like Pia, we hope to help to create a “cheat sheet” for patients and families marked by the comfort and encouragement knowing that someone else sees and knows what it is like to be diagnosed and live with a chronic disease. We may not be able to control a diagnoses, or how a body responds to treatment, but like Lauren, we can control our response to see the good and give back. We’ve got your back Lauren!

Love,

The PAB’S team

Lauren with her PAB’S PACK!

Give to the Max Day: Giving Forward Through Giving Back

Written by Caroline, PAB’S Teen Ambassador

Give to the Max Day is November 15th!

The Minnesota Community Foundation, and an assortment of Minnesota nonprofits, started Give to the Max Day (GTMD) to inspire a collective day of giving for all Minnesotans. Since launching in 2009, GTMD has allowed over 300,000 donors to give almost $200 million to 10,000 nonprofit organizations and schools across the state.

Giving is two-fold, aiding those who receive the gift, as well as those who donate. Research has found that generosity prompts happiness, health and even more generosity!

Allina Health therapies donated their time and talent this fall to pack 102 PAB’S PACKS which were shipped to our children’s hospital partners in MN, IA, NY, CA and FL.

While common perception is that self-care results in happiness, studies have shown that caring for others increases mood more effectively. Giving releases endorphins, which relieve pain and induce pleasure. A commonly known result of exercise, endorphins also relieve stress and symptoms of depression and anxiety.

This stress relief has been tied to longevity. A study from the University of California, Berkeley found that elderly volunteers of two or more organizations were 44% more likely not to die over a five year period when compared to elderly who did not volunteer.

Sofia with her PAB’S PACK during a recent stay at Children’s MN.

Another benefit is an increased perception of community. The release of oxytocin, a sex hormone, has been linked to giving. Oxytocin is integral for the creation of healthy and sustainable relationships, whether romantic, friendly, or professional.

An increasing sense of community not only inspires others to give, but benefits volunteers personally which in turn impacts the rest of the world. Giving is contagious; all it takes is one person to start the virtuous cycle!

As GTMD and the holidays approach, we hope that you will spearhead this cycle for your community. Doing so will help the world, yourself, and inspire others to receive the same benefits.

On GTDM, PAB’S PACKS will be the charity of the month at the Minnesota Wild hockey game! From each ticket purchased, $10 will go to PAB’S. In addition, we are lucky enough to have a $10,000 match for this game so all donations will be double in their impact. A donation of $25 will send 1 PAB’S PACK to a sick teen in need to hear they are not alone.

As you consider the nonprofit who will receive your gift, please consider us. Aside from a hockey game, generosity prompts enormous mental, physical and emotional benefits. Your generosity towards PAB’S will help us put more packs on the backs of teens!

Donate to PAB’S PACKS for Give to the Max Day!

Buy Tickets to the Wild Game on November 15th!

A group of students from Blake Upper School shared a Friday afternoon with us in order to pack 100 PAB’S PACKS to be shipped to hospital partners nationwide.

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We’ve got your back!

Love,

The PAB’S Team

Looking Back on Childhood Cancer Awareness Month

Written by Caroline, Teen Ambassador

Welcome to the PAB’S PACKS blog! We are delighted to bring you monthly posts to engage you in PAB’S work as well as to inform you about upcoming events and significant developments in the community of childhood chronic illness.

September was Childhood Cancer Awareness Month. According to the National Pediatric Cancer Foundation, 1 in 285 kids will be diagnosed with cancer before their 20th birthday.

Meet Ryder. He received a PAB’S PACK in 2016 and was inspired to start his own project called Ryder’s Smile Packages. Learn more about him at @rallyingforrydergetchis

Only 4% of federal government cancer research funding currently goes to pediatric cancer research. The National Cancer Institute received nearly 6 billion dollars in 2018 for cancer research, meaning that just a little more then two hundred million dollars will be devoted to pediatric cancer research.

Our co-founder, Pia Phillips, was diagnosed with Hodgkin's Lymphoma, Stage IIA, when she was 14. Thanks to the wonderful care she received from Children’s Hospitals of Minnesota, Pia is now cancer-free!

But many kids are not as fortunate, or able to receive the care and comfort they need. Since 1980, less than 10 drugs have been developed and approved for use in children. With such limited resources aiding the treatment of kids, it is no surprise that cancer remains the number one cause of death by disease in children and teens.

In the face of these disheartening statistics, PAB’S PACKS was founded to bring comfort and encouragement to teenagers with chronic diagnoses. Because a pediatric cancer or other chronic diagnosis can feel scary, hopeless and disorienting, PAB’S PACKS exists to let teens and their families know they are not alone and someone has their back!  

Abbie (left) and Pia (right) visiting a patient at Children’s Minnesota this past summer.

As stated by Curesearch Organization for Children’s Cancer, 43 children and teens are diagnosed with pediatric cancer every day. Only research can eliminate this number, but the power of connection and community can has shown to inspire hope and support overall healing.

As Pia and Abbie often say, “we are not mad scientists that can cure cancer, but we do know what it is like to feel alone and in need of support.” That’s why we created PAB’S PACKS—we got your back!

Love,

The PAB’S team

Meet Abbie

In my 18 years of living there are only so many memories that I would consider “vivid.” March 6th, 2013 is one of those days that I remember vividly.

I hadn’t been feeling well for the past several months. I would wake up 3 times a night to use the bathroom and I was also waking up several times a night with massive cramps in my legs. I had been eating more than I ever had in my life but was consistently losing weight. I fell asleep in class, and was constantly tired and fatigued. Clearly something wasn’t right.

The night my mom realized she needed to take me to the doctor was when we were  at the Maroon 5 concert- my Christmas gift from her.  I drank 5 of the big jumbo concert sized cups of water and between every song I had to run up the steps to use the bathroom. When we returned home that night, my mom let me know that she was going to pick me up from school the next day and that she had an appointment for them to test me for diabetes. I immediately went to my room and promptly did what people do when they are curious... I googled what the symptoms of type 1 diabetes are and two minutes later I was back in my mom’s room with tears streaming down my naïve cheeks. I had every single symptom listed. 

I was scared, anxious, upset, and completely unsure of what any of this meant and how it would impact my life going forward.

The next day my mom and I sat in the small room waiting for the doctors to rule out every other possibility before they tested me for diabetes. The pediatrician walked in and told my mom that we would be needing to head straight to the ER and that I was in diabetic ketoacidosis. 

This means that there is a shortage of insulin, causing the body to burn fats and leaving acids in the blood stream. When we checked into the emergency room all I remember was asking my mom over and over for snack. My body was literally starving and very fatigued. My blood sugar was at 505 and I had been in that range for at least the past month and a half.

The next three days I spent time with my parents Martha and Tom and my older sister Lucy learning about the disease that I would be living with the rest of my life. I was pumped with fluids and put on an insulin drip to get healthy again. Leaving the hospital was one of the most vulnerable moments of my life. I was going to be living with a life threatening disease and not be under the care and supervision of nurses and doctors everyday. I am lucky that I have such an amazing support system. My family was as dedicated to learning about the disease as I was,  and wanted to do anything and everything they could to help and support me—and they still do to this day.

Diabetes affects my every action, thought, and choice, but I don’t allow it to consume my life. I remember being so scared the day I was admitted into the hospital because I had zero control of what was happening to my body. I quickly learned that being Type 1 meant that I wasn’t going to be able to control everything in my life. Taking a stressful test in school causes my blood sugar to spike, or when I am playing tennis I always have a gatorade in case my blood sugar starts to drop (even though I would prefer to just drink water). But, this means that I take control of the things that I am able to. can plan my schedule, I can make sure my room is always the way I like it (semi tidy), and I can choose what I eat, when I go to bed and what makes my body feel better. I can also control how I let diabetes affect my attitude— and I choose to not let it hold me back! I love to be outdoors hanging out with friends and family, playing tennis and lacrosse, working out, traveling, going to sporting events, and I also love doing art projects. I am a captain of the girls varsity tennis team and I am also involved with my school’s student judiciary board. I am a big advocate for Type 1 Diabetes and was lucky enough to have the opportunity to be a 2015 JDRF Children’s Congress Minnesota delegate and travel to Washington D.C to advocate for T1D with my congressmen and senators. I hope to attend college in Boston next year and my dream degree is in Human Organizational Development.

I try and stay as in tune with my diabetes as possible, but sometimes I can’t help being frustrated or angry with this disease. When this happens I try to remember what my mom always tells me... “you are only given what you can handle.”  

We got your back!

-Abbie

Meet Pia

Hi! My name is Pia and I’m 17 years old. In 2014, when I was going into my first year of highschool, I was diagnosed with Hodgkin’s Lymphoma. Hodgkin’s Lymphoma is a type of cancer that occurs in the lymph nodes all around the body. I didn’t know anything about the disease when I first was diagnosed, except the connotation of cancer patients having bald heads. That quite frankly terrified me. I had long, brown locks and I was told that soon they would be gone. I was horrified, sad, and scared when that image had to become a reality. But, the day I had my hair shaving party with my closest friends and loved ones is when I was a changed person.

Having no hair was actually quite convenient; I never had to worry about a bad hair day! I completely changed my attitude from being sad to determined. I was determined to not let this stupid disease define me, because if I didn’t let it, it couldn’t. Within a (luckily) short 5 months, I was declared cancer free and in remission. To this day, I go in for scans and blood draws just to make sure my body is doing good! Keeping a positive outlook on everything dramatically helped me out during those not-so-fun months. I view that experience as more of a blessing than a curse. If I never had gone through it, I wouldn’t of had this awesome head of curls, I couldn’t of bonded with Abbie that extra step, and PAB’S PACKS wouldn’t be around. I am now going to be a senior in highschool, soon to start a whole new journey of my life the year after this one when I go to college. I have been grateful for all the opportunities and experiences in my life: the good and the bad

Pia with a patient at Gillette Children’s.