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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.

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.


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

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.

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.”


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!

Lauren with her PAB’S PACK!

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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.

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.

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.

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.


We’ve got your back!

Love,

The PAB’S Team

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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

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.

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

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Meet Abbie

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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

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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.

Pia with a patient at Gillette Children’s.

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