For Frank

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For Frank

As I sit in the airport in Honolulu, I’m struggling to find the words to summarize our time here in Hawaii. Everything about our time here felt so important and like it was supposed to happen. This trip was not planned. It came together in about 5 days. Even though it was thrown together and so last-minute, it felt right. 

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Lighthouse was never meant to be an Arizona-only nonprofit. Arizona is our home and where I was treated for my cancer, so it will always be our primary focus. However, after seeing the impact that we can make and have made - I know it can be bigger. This trip has made that even more true. 

The night before I received the email from Hospice Hawaii, I had a dream about Hawaii. I had never been before, but it was on my mind a lot. I dreamt we were in Hawaii, for Lighthouse, and that afternoon texted my friend jokingly saying we should hop on a plane. Then I received the email about Frank and immediately felt connected to it. Normally, Lighthouse doesn’t fundraise specifically for one family. It was not planned with Frank, but just happened naturally. I posted his story and immediately was flooded with messages and donations. In 2 weeks we raised $2,000 for this family. 

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Frank is a 17-year-old from American Samoa. He traveled to Hawaii for treatment in 2016 where he has been receiving palliative care for an aggressive form of Nasopharyngeal Neoplasm. His parents and younger siblings recently joined him in Hawaii to support Frank in his battle against cancer and to spend as much time with Frank as possible as his cancer is now terminal.

Frank's family has a very limited income. They live together with his aunt in a 2 bedroom apartment with no car. The most difficult thing for Frank and his parents have been traveling to and from American Samoa and not being together when Frank needed treatment. Lighthouse helped fly his older sister, Mary, to Hawaii to be with him and say goodbye. 

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After seeing all that our supporters had done for this family and how many people were invested in this story, I decided to see what it would take for us to hand-deliver all that was raised. Thanks to the generosity of many people, Lighthouse was able to fly to Oahu to meet Frank and his family. *Update: We just wanted to clarify once again that absolutely none of your donations funded this trip. 100% of donations went directly to Frank and his family. Everything that you saw from this trip on our social media, including the places we stayed and the car we drove, were donated by the generous people of Oahu. Everything else in between that was not donated, was not funded by Lighthouse.*

Through VRBO, we contacted Beachfront Villas Hawaii, who donated a beautiful house for us to stay in the first 3 days of our trip. It was such a gift to be able to come back to this peaceful place at the end of our days. For the last few days of our trip, the wonderful staff at Hyatt Place Waikiki provided us with a room. We also were provided a car by Lucky Owl Rentals for the entirety of our stay. 

When the time came for us to meet Frank, we were filled with so many mixed emotions. We arrived on Monday and were meeting them Tuesday morning, so we had some time to go shopping for them and to prepare. In addition to the monetary donations, we went to Target to buy some household essentials for them including toilet paper, laundry soap, towels, dish soap, body wash, etc. 

On Tuesday morning, we arrived to their home in Honolulu where we met a representative from Hospice Hawaii and Sunny, a local photographer who came to capture our time with Frank. Walking in, there was a heaviness that filled the room. There is a difference in cultures, and English is their second language. Once we got settled and everyone became a little more comfortable, we were able to hear their story and to spend about an hour together. 

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They live in a small 2 bedroom apartment, where Frank sleeps in one room and the rest of the family sleeps in the other. The 11 of us gathered in Franks bedroom, amongst the hospital bed and oxygen tank. I shared with them a little history about Lighthouse For Hope and why I started it. When I told them how many people had donated and heard their story, their eyes filled with tears and they were so humbled. 

Franks dad, Shute, told us how they came to know that Frank was sick. It was an honor to hear their story. My mom was able to be there with us and she bonded with Franks mom about how hard it is being a parent of a child with cancer. There was not a dry eye in the room. 

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That hour we spent together in their home, was something that we will never forget. It's something that we all know was so special and almost sacred. His parents pain and feeling of helplessness adds to the difficulty of being away from home and unable to work. His siblings are away from their normal routine and friends, knowing their brother doesn't have much time left. For them to allow us into their home and accept charity, shows how brave they are. It's an honor that we will cherish forever. 

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When thinking back on these past few weeks, one word comes to mind - whirlwind. In the two short years Lighthouse has existed, I sometimes forget how much we have been able to accomplish. In Hawaii, after meeting this family, I couldn't help but think that this is only the beginning. The impact we make in these families lives, big or small, matters. I am leaving this trip with a fresh perspective and drive to continue to help those from all over experiencing pediatric cancer and all that comes with it. 

Be a light!

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Grateful For The Chaos

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Grateful For The Chaos

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My immune system isn't what it used to be. I don't think it will ever be what it was pre-cancer. When I am stressed and have too much on my plate, and then finally get a chance to breathe again - I crash and burn . . . hard. If I have a busy month where I am going from thing-to-thing and stressed about life/work, the following month I am sick. My hands and feet swell up, my body aches with a fever and I stay in bed all day. These next few weeks are going to be rough on my immune system. I am taking a handful of vitamins, exercising when I have time, and trying to get enough sleep in hopes that I will trick my body and beat the system. I even ordered a green tea at Starbucks today instead of a coffee - big things, people. 

It is a good thing that these next few weeks are nonstop, though. After 2 years of hoping and praying that Lighthouse will finally take off and be able to help more families, it has. So many doors have opened this last month. I have quit my job and am focusing on Lighthouse full time, which is terrifying and exciting at the same time. Next week I have a meeting at Lurie Children's Hospital of Chicago with the oncology social workers. I have been trying to get into other hospitals to become a resource for their families for quite some time and it's finally happened. While I am in Chicago we will also be helping a family. 

When I return from Chicago I will have two days to prepare before I head to Houston. When Hurricane Harvey hit, I felt compelled to help. Lighthouse put out a Harvey Relief shirt. In the process of finding families to help, I became overwhelmed with how many people are still struggling and feel forgotten. My inbox became full of applications from parents who were desperate to help their families. My one criteria for the applicants was that they have a child with cancer, life-threatening-illness, or disability. People wrote in who have children with Leukemia, Neuroblastoma, Sickle Cell Anemia, Autism, Down Syndrome, and severe emotional disorders. I knew after reading their stories that I had to go to them. Thanks to the generosity of a dear friend, we are able to make that happen. At the end of this month, myself and two others will be headed to Houston to represent Lighthouse and help victims of the hurricane. 

The entire time I am in Houston, my mom will be moving out of the place my family has called home for 15 years. Starting a business is no easy task. I am so grateful to have parents who understand that it takes time and lots of patience. Until I am able to support myself off of Lighthouse, I am still living with my mom. When I return from Houston, it won't be to my house. 

Moving, traveling to Chicago and Houston, trying to find an office space, fundraising for families, applying for grants, all while trying to plan our second Lighthouse Holiday Party. Lighthouse is really starting to grow in ways that I have been waiting for for what feels like forever. It is all happening at once, which is so exciting, but I am trying to not get overwhelmed and pull back. I am currently listening to Brené Brown's book Braving The Wilderness. I am kind of obsessed with her right now and watched all her TED Talks and interviews on YouTube last night when I should have been sleeping. In an interview with Oprah she talks about how joy is terrifying. This confused me at first, because who would be terrified of feeling joyful? Brené says, "When we lose our tolerance to be vulnerable, joy becomes foreboding." and that sometimes in our experiences, we are "dress rehearsing tragedy so we can beat vulnerability to the punch." I don't want to fail. I don't want Lighthouse to be something that in 5 years people have forgotten about. I think in some ways I have been "dress rehearsing" failure and not pushing myself so that I won't be disappointed if it doesn't work. 

You cannot practice joy without being grateful. The feelings of joy and gratitude go hand-in-hand. I must stop avoiding success and what I am meant to do for fear of the worst. Instead, I must practice gratitude. I am grateful for experiencing cancer and all that it has brought to my life. I am grateful for 2 years of hard work and feeling stuck. I am grateful for the busyness and chaos that is to come. 

To stay updated on all that is to come for Lighthouse, make sure to follow us on Instagram: @lighthouseforhope. This is where I update the most frequently. 

We will be helping lots of families while we are in Houston. To help us do this, visit our Amazon Wish List

Be a light!

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The 4%.

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The 4%.

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Every single day 32 children are diagnosed with cancer. 4 of those children will not survive. The rest can suffer from long term effects from their treatment.

$5.067 BILLION in government funding is for cancer research. 4% of that goes towards pediatric cancer. 

Average cost of cancer treatment for 1 child is $500,000. Even with insurance, out-of-pocket costs average $40,000 per child for treatment. 40% of a families monthly income (on average) will go to cancer-related costs that are NOT direct medical bills such as transportation, decreased income, and relocation for treatment. 

These numbers are staggering. They have to change. These kids deserve to be more than just 4%. 

Lighthouse For Hope covers the things that insurance doesn't cover. While we can't make all these extra expenses go away, we can make a dent. Some of the best things people did for my families during one of our trials with cancer was give us gas cards and fill our fridge. At one point I was driving over 40 miles to the hospital every day for 12 weeks in a car that sometimes couldn't even make the trip to Target. 

We can make sure that these families can buy gas to drive to and from the hospital, put food on the table, and have clean clothes to wear to chemo. If even for just a brief moment, they do not have to worry about affording basic necessities while experiencing the physical, emotional, and financial setbacks caused by childhood cancer. 

Join us and be a light. 

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You CAN help.

I received an email this morning that said "Unfortunately (but also fortunately) I have not been touched by cancer close enough to be able to help you." This kind of struck me. Often people tell me that they can't help me because they don't have any money to donate. While financial support of Lighthouse is extremely important, it is not the only way. I am here to tell you that not only do we need help, but you CAN help. 

Childhood cancer is the number one disease killer of children in the U.S. Every 2 minutes a child is diagnosed with cancer. One in five children diagnosed with cancer in the U.S. will not survive. Childhood cancer is a big problem. You may not have been personally touched by it, but you might be. And you can be touched by it by hearing the stories of the families we help. 

There are so many ways you can help out Lighthouse For Hope. 

  1. Donate. You can either donate by clicking the "DONATE" button on our homepage or by purchasing some of our merchandise. Proceeds will go directly to families fighting the good fight.
  2. Become an ambassador. If you are a college student, please apply to be part of our Ambassador For Hope program.
  3. POST. This is quite possibly the biggest way you can help out Lighthouse for Hope right now. We need help raising awareness. Post a picture in your Lighthouse shirt or hat and share a little about Lighthouse's mission and how easy it is to get involved. If you do not have any Lighthouse merchandise, you are more than welcome to repost one of our images. Follow us on Instagram, Twitter, and like us on Facebook. 
  4. Fundraise! There are so many fundraising ideas you can start to benefit Lighthouse. Run a 5k and get friends and family to sponsor you, read a stack of books, jump rope for 24 hours - the sky is the limit! Do something challenging for yourself and ask friends and family to make a donation.

Lighthouse is always looking for helping hands. We are eager to make a difference this year and we can't do it alone.  Join us in the fight against pediatric cancer!

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