Who We Are

Our Shoe Box

Welcome to our Shoe Box!

Our inspiration, Ally loved saving mementos in a shoe box;  tokens from somewhere she went, something she loved, special keepsakes from important moments in her life.

Based on her love for saving memories, our Shoe Box will be a compilation of meaningful stories from our board, our team, a grantee, a survivor, a caregiver, news articles, information on nutrition or anything that we come across that we feel will be of interest to all of you!

So check back often and open our Shoe Box to see what’s inside!

MEET CARMEN

#AWFSQUAD Runner in Honolulu Marathon

Meet Carmen one of our AMAZING VIP Charity Honolulu marathon runners. She will be running December 10, 2017 and fundraising for AWF before she goes. We asked Carmen to tell us and you all a little bit about herself.
I’m so excited to be a part of your team! I must admit that this is the first time I’ve done a fund raising entry so I probably have a lot to learn. But I am driven to raise as much money as possible because I love what your organization is about!

A little info about me: I’m a neonatal nurse practitioner from North Carolina. I started running in my mid-twenties as a way to stay in shape and began racing to give me motivation. I did a few shorter races before participating in my first half marathon in 2009. I began competing in triathlons in 2012 and did my first Ironman this past November. The Honolulu marathon will actually be my first marathon without a swim and a bike attached!

I really enjoy training and racing but sometimes it can feel a little selfish because everything is all about me and getting those workouts in. So I’ve been looking for ways to give meaning and a higher purpose to my hobby as well as make my hobby benefit others. Even though I could just pay the entry fee because I know a portion of the money goes to charity, fund raising will make a bigger impact – especially to the Allyson Whitney foundation!

Carmen

Carmen is so talented! She has created a beautiful lap blanket to raffle to meet her fundraising goal. Every $10 gets you one raffle ticket! Donate for a chance to win! And if you don’t win the blanket, you are a winner to us! http://bit.ly/2u4xlSx

Give-A-Sh*t Knit Kit Letter

- from Sh*t That I Knit

We wanted to share this letter with you, from Sh*t That I Knit, that is delivered with Give-A-Sh*t Knit Kits to our Grantees:

“Hey there,

First of all, I am so excited that you are sitting down to knit! We were inspired to create these Give-A-Sh*t Knit Kits after teaching a friend with cancer how to knit when she was diagnosed with Leukemia at the age of 25. At the time, she just wanted to learn how to knit and hang out with her girlfriends, but by the end of the night we all realized how therapeutic knitting actually is. Her mom remarked that she for the first time in weeks, she thought about something other than cancer and at that moment, I started investigating therapeutic knitting.

Here are just a few ways that knitting is proven to be more than just a really cool thing to do 😉

– It teaches perseverance: When you see that dropped stitch three rows down and you have to rip it out and go back… There’s realization, frustration, and eventually acceptance. Then you move on and keep going .

– It increases confidence, better equipping you to deal with obstacles

– It takes focus away from perceived pain (both physical and emotional)

– It gives your wandering mind something to concentrate on

– It makes you productive while resting

– It fills long stretches of time – this doesn’t have to mean hospital waiting rooms, but it’s great for those too.

– It encourages you to look forward to tomorrow

So! Get started. Remembered that the act of knitting is therapeutic in of itself – whether you become a professional knitter or put your needles down after an hour, give it a shot. Allow yourself to think only about your knitting for a little while and pat yourself on the back when you figure out how to cast on.

LOTS of Love,
Christina Fagan
Founder & Chief Knitting Officer at Sh*t That I Knit

PS. Another really cool part about knitting is bragging about it. We want to see what you make, so share with us on Instagram @giveashitknitkits and #giveashitknitkits – plus follow along to see what everyone else is knitting!

 

A Reflection on Cancer

by Grant Recipient Allie

While battling cancer, or dealing with someone that has cancer, it’s not an easy thing to deal with or handle. Sometimes you aren’t even sure how to handle it.

Unfortunately for me, not only have I had many loved ones lost and battle this disease, I had a long battle myself. And to be honest, I am still trying to figure out how to handle it all. When being told “You have Cancer” many things tend to rush through your head. You go through a rush of all different kinds of emotions. Depressed, sleepless nights, scared, anxious, nervous. Things that I’m still not even sure how to deal with today. Many people have asked how I’ve stayed so strong, and inspirational throughout my whole battle and journey with Cancer. I try and tell them – Stay positive, stay strong, stay hopeful and have Faith. Have faith that everything happens for a reason, and you’re strong enough to beat this. After all, my parents didn’t give me the middle name Faith for no reason!

If there is one thing I have learned, its to be grateful. Grateful to see another day, grateful for friends, family and loved ones to stand by you at some of the hardest times. These are things that people usually tend to take for granted. I for one, have no problem admitting to that. I now have a greater appreciation for life, friends and family. No ones life is perfect, but you can chose whether to be happy or not. I once read “happiness is not a fulfillment of what we wish for, but an appreciation of what we have.” I now appreciated everyone, and everything in my life that much more. Not many people can say they got a second chance at life.

I’m lucky enough to get a second chance, and tell my story. I want to share my journey to help inspire others. I want to let people know that its OK to be scared and sad. Its only natural. A positive outlook on even the worst situations can make what you’re going through a little easier. Organizations like the Allyson Whitney Foundation give people some extra hope, that some day soon this disease will be in the past.

“Dream Deferred”

by Grant Recipient Dan

One of my favorite poems by my favorite poet is “Dream Deferred” by Langston Hughes. In the poem the author asks the questions “What happens to a dream deferred?” On Saturday, the week before Christmas in 2013, I found myself asking the same question. In December 2013, I was diagnosed with Chronic Myelogenous Leukemia (CML). CML is a cancer that is rarely found in children or teenagers. It is generally found in adults’ age 65 years or older. For the past six years I was being treated for the flu whenever I had a fever by my first pediatrician. Some signs of CML were fatigue, swollen lymph nodes, recurring fevers, easy bruising, one and joint pain, abdominal pain and bronchitis. I have been experiencing all these symptoms for years, but was told that it was growing pains or the doctor could not find a medical reasoning for my symptoms. On Saturday, the week before Christmas, I had an appointment with a new pediatrician in a different practice. My mom asked her to run blood tests on me. She checked me over thoroughly using what she called the old fashion (hands on) approach to doing physicals. She called in another doctor and had her check me as well. Immediately, she sent us to our local hospital because my white blood cell count was unreadable at her practice. She thought it best for test to rerun at the hospital, we were unaware of the gravity of what was about to occur and how it would forever change my life. “You have Leukemia” was what I was told by the doctor from our local hospital. At that moment the room stopped, and it seemed as if life paused, “How can I have cancer?” I was only seventeen years old. After the initial shock the doctor explained that my white blood count was extremely high. I was immediately transferred by ambulance to another hospital to be admitted to their Cancer Center Pediatrics Intensive Care Unit (PICU).

So what does happen to a dream deferred? After the diagnosis and the initial 13 days stay in PICU, I was being treated using chemotherapy. I was released the first week in January 2014, not knowing that during the simmer I would be coming back to the hospital for an epic uphill battle to fight my cancer into remission through the process of having a bone marrow stem cell transplant. In July, my stem cell transplant began with the donor being my sister. The transplant was ironically the part compared to what came next, I considered to be the hardest part of the process. During my summer stay in the hospital post-transplant, also known as DAY Zero, I encountered many setbacks including a seizure, severe allergic reactions to blood transfusions, liver and kidney failure, high blood pressure, and diabetes, but I was fortunately able to surpass these obstacles successfully. Throughout my ordeal my emotional support unit was always with me to experience my cancer journey fighting along with me. In August, I was released from the hospital, but was remitted a week later and remained until the middle of September. I stayed in the hospital 71 days. Soon, I was faced with my next problem, it was September, my senior year already underway and I was just released from the hospital.

My senior year started September 2nd. I looked forward to this for many years because I worked hard to maintain a high GPA and this was the accumulation/peak of all my years in school. My senior year as I had dreamed of it was now being deferred. Due to having no immune system and my home school is under construction, I am currently homebound and unable to attend any of my core classes, socialize with my peers or attend school events, such as Prom. I am fortunate that I am able to attend my technical class being on partial homebound. I am currently trying to come to terms with the fact that I am homebound and missing out on my senior year, while keeping up with my full workload at school, college deadlines, medications and outpatient clinic visits per week.

The goal I have for myself this year is to graduate alongside my peers, attend college during the Fall semester of 2015, study in the field of technology and to realize that my dream has NOT been deferred. A significant component of helping me attain and realize that my dreams are not deferred is my family, especially my mother. She has been a constant in my life and my biggest supporter in my cancer journey even on days when I do not feel well. My mother has committed herself to being my sole caregiver which I was required to have after leaving the hospital. My mother helped me to realize that there is strength in myself that I never knew I had before and is helping me to reach my dreams and surpass the obstacles in my way. I have learned never to take anything for granted and to keep reaching for my dreams no matter what life throw at me . Never Give UP!!!

Dan

"Why I Do What I Do" -

Barbara Strong, Co-Founder

Welcome to our much anticipated overdue website and to the page, “Our Shoebox” I will tell you a snippet of my story as Allyson’s mom and caregiver on the cancer trail, as it is intertwined within the site and why I do what I do today…

When we decided to pursue what Ally had envisioned, in January of 2012, we were all still reeling from our loss of Allyson. The loss of a child is so unnatural that words cannot do it any justice. Our incorporation began in March and our first large scale fundraiser was in May. The foundation launched with so much support from all corners of our lives that we are still in awe of this and our gratitude has no bounds. Our board members are all volunteers whose priority is fundraising and donating to individuals affected by cancer with ‘life interrupted’ grants. Meet “The Board” with their personal thoughts. Also, “Our Team“, evergrowing, has their reasons why they are volunteering. With the launch of our website, we hope you get connected to continue the journey with us. We have banded together to start small and Dream BIG! Everything in life makes a difference and has an impact on someone else.

Ally, my daughter was our inspiration, our start, our one. The power of one is amazing. We turn into more than one; ‘visit’ “Our Grant” page to see us evolving.  I have met many people along the cancer path with Ally and without her. It has added another dimension to me, to experience the struggle, the hope, the heartache, and the success of survivorship.  As you  watch a brief video with Ally on “Her Story” page, you can hear her passionate hope,the essence of why we formed and began.

A cancer diagnosis is devastating but a rare one? Where does the hope come from? Yourself, others? “Our Pursuit” page bearing the statistics tells us “rare” is not that rare and affects many, many people.

When I think of Ally there is a multitude of emotions from when I think of her loving embrace and dancing spirit, to the deep wound of emptiness in my soul. She was petite, pretty, blonde hair, blue grey eyes, athletic, funny, and smart, a “rare” combination (in my opinion as her mom). She could dress down, which she did often in hoodies, or be absolutely breathtaking when she dressed up. Ally just graduated  with her masters degree in Speech Pathology when she was told about her cancer. Pathology said it was cervical cancer. She would have a procedure, do some chemotherapy and we would be on our way. But, we were soon discovering our world would never be the same. Memorial Sloan Kettering Cancer Center in NYC relooked at her slides and said she had a rare type, not HPV related. Only 1% of women are diagnosed per year (approximately 100 in the US), This cancer does not have a precancerous stage and it is not preventable. It has no set protocol and a very poor prognosis; this beast is called Small Cell. After the feeling of being hit by a 2×4 to the head- Ally said, “wtf, me?!” She had her career starting in a month, she had a future. Ally wanted to be on a billboard yelling, “This could happen to anyone!! Really it could!!” Another harsh reality to deal with, if she survives, no children. We all read stories and we really didn’t think it could happen to us; the reality is truly unreal and incomprehensible.

From the beginning of her treatments Ally would read about others struggling on the Caringbridge site (a good resource which bridges family and friends).  Ally would ask often if she could send money to a family whose child was suffering. I would say yes, always. We would light a candle for each one and send light for healing. That was Ally, kind and empathetic. She was obsessed in the beginning months to try and figure out why she developed this disease. She compared “notes” with the few others (the sisterhood) whom she met online with the same cancer diagnosis, hence why we grant to MD Anderson Cancer Center to continue her goal. Look at our “Other Initiatives” page and read why each is personal and important to us.

I was focused and knew this would get better, there was no choice in my mind. I stopped working and was determined she would be fine. We heard the words like an echo, “It metastasized to her liver.”  Our family regrouped, she was 24!! “Okay- we can do this.” we traveled to Dana Farber in Boston, MD Anderson in Texas and Mexico for opinions, advice and new protocols, You can’t think “why me” even though it is natural.  I would tell her every day, “bad things happen to good people.”  And when things got really bad, I would say “miracles happen everyday.” We believed wholeheartedly in that miracle. Every night, I would  ask her to tell me what she was grateful for; every little thing was important.

Life was spiraling out of control. Unbeknownst to us, a dear friend started a plea for us. I was horrified. I yelled “Give them back their money!”  In my mind, there was no money issue, Ally would get whatever she needed. The money had poured in over night, the compassion from my family, friends, community, as well as my daughters friends and family was overwhelming. Once I wrapped my head around how it was given in love and hope, I was able to accept the gifts of generosity. Ally wanted/needed nothing thanks to many–except life… That I could not give. It is with a sad heart that I could not win this cancer war that raged aganist my beautiful daughter for 14 months. But, it did not and will not take away whom she was.

Through the insurmountable pain, we began the foundation with $3,000. That money was left over from the generous acts of kindness given from others. This foundation is built on a foundation of love. I think of Ally as a gift given to me in this life and I want the gift of Ally to continue; her selflessness, her kindness.  Ally loved quotes, so they will always be sprinkled throughout the website  The foundation has carried me through a time when you can’t even think about the unthinkable had happened or you might lose your mind. Focus- I’m still keeping a focus on what’s important: to get through the day and be grateful. Collectively, we are strong and our goal is the same to carry out Ally’s pursuit; As everyone in life needs hope and a helping hand every now and again…

With love,

Barbara Strong, CCO and Co-Founder

aka Ally and Katy’s mom