When the Going Gets Tough

     Some days seem darker than others for me.  And some days seem harder.  But then I remember that it's just another moment in another day and the next moment could be filled with laughter or a burst of bright warm sunshine through the dark and heavy clouds. My overall story is not defined by a single moment in time. And my current situation doesn't have to cast a shadow over my life. I can still find moments of joy and laughter when there's struggle and hardship in my life. I can still find moments of peace within myself and moments of quiet amidst the chaos. I can still find strength even when I am wavering and weak.  Whether I'm battling cancer, fighting for my life, or just trying like heck to get through a challenging day; when the going gets tough I have to remind myself of these words...

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Physics

     This photo won't mean anything to anyone besides me but this was my last day of being a normal carefree teenager. My physics teacher, during homeroom, let me make the glass tubing for an experiment the next day. I didn't finish them all, so he said "well, you can always finish the rest tomorrow." But that night was when I went to the hospital.

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Bland and Metal

     Hospital food was always bad but sometimes worse than others. When I was on stem cell treatment the little menu I had to choose from was cut in half. I'm a very picky eater so this sucked for me. Most of the time we brought in food from home and kept it in the fridge so I didn't have to eat hospital food.

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My Favorite Nurse

     I have had well over thirty nurses, and most of them were only for one night or one day. However, there was one nurse who always requested me when I was in. She would even stop by if she didn't have me as her patient to say hello before she went home.

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When A Seed Is Planted It Becomes A Rose

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"I first met Nicole (Nicki) in 2002, at the Children’s Hospital of Philadelphia. She too like Dakota, is a strong, heroic warrior and survivor of cancer. Nicole has been an Ambassador for ARVF, representing the Foundation during Teen Cancer Awareness Weeks, as well as being a Guest Speaker at our Annual Birthday Bash. She, like Dakota, understands the trials and needs of adolescents & young adults living with critical illnesses. She gets it; she’s been there. Please welcome Nicole in joining the conversation with Dakota on our weekly blogs." - Gisele DiNatale, Executive Director ARVF

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      I was 14 years old, an ambitious, hardworking, honor student with lots of friends and a growing independence. And then I got cancer. My world changed within days. 

     It's been 15 years since I was diagnosed with CML (chronic myelogenous leukemia) and received a stem cell transplant from a perfectly imperfect stranger. It's been 15 years since I met Alicia. It's been 15 years and I live with cancer every day. It's taken years to no longer identify myself as cancer but it remains a part of my life. Alicia and I met in the hospital at CHOP and from day 1 we hit it off.  It was hard being a teenager in a hospital full of children. The toys were too juvenile, the playroom too childish with seats that were too small, and even the channels available to us in our hospital rooms were limited to cartoons and kid friendly shows. I felt fortunate to have the friends I did and to know I wasn't alone with a friend like Alicia. The first thing I'd ask whenever I was admitted was if Alicia was there too. We got it, and we got each other. I spent my time making bracelets or doing arts and crafts that friends and family would bring in for me and Alicia always had her nails painted in a new color every time I saw her. We found ways to keep ourselves busy and remain optimistic. I felt isolated though. There wasn't anywhere for me to feel like a teenager in the hospital, to escape the illness that was consuming my life. All Alicia and I wanted was space to feel like ourselves, to be a teen again. And that's where the Alicia Rose Victorious Foundation was born; in that void of support for teens. Now ARVF has installed countless Teen Lounges, provided hope and acknowledgement through Teen Kits and Bandana Pillows, and now with the Art Cart, will be able to provide even more escape and support for hospitalized teens. Just knowing I wasn't alone made a world of difference for me in the hospital; having Alicia as a friend. To know someone is thinking of you and acknowledging your needs as a young adult or teen has such a huge impact on a young person's outlook and life. A positive attitude can make all the difference when you're facing life's hardest challenges. ARVF helps along the way. 

     It's an incredible thing to see how far we've come since I was sick and in the hospital, how many teens’ lives have been touched and changed because of Alicia's vision and the drive behind the Alicia Rose Victorious Foundation. Seeing a seed planted and watching it get nourished and grow is a beautiful thing. It feels so good knowing that others don't have to struggle as much or feel the isolation I felt when I was hospitalized and a teen. 

 "When a seed is planted, it becomes a rose."

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Biggest Hurdle

     I was discharged today from physical therapy and she said I'm doing great. My biggest hurdle to overcome next will be regaining my endurance and strength. It's been a long two years of deconditioning and I hope it won't take that long to bring it back. It is very difficult being 19 and not being able to keep up with people twice my age without struggling to breathe and catching my breath. I know with determination I will eventually get to where I want to be.

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Better Spirits

     On Wednesday I will finally get my second hip replaced and hopefully be on a one-way street to a "normal" life. Over the last week or so my hip has gotten exponentially worse but only two more days with this pain then I'm on the road to healing.

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Cosmetology

     I am so beyond ecstatic to announce that in March I will be attending Rizzieri Aveda School in Voorhees for twice a week learning cosmetology. I am so beyond excited for the amazing opportunity they have given me. They have awarded me a full scholarship and I cannot thank them enough! I am so excited to thank them in person at the Birthday Bash! 

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A Ways To Go

     I have finally reached the one year mark if remission. I cannot believe it has been a year since I was given my stem cell treatment that would help ensure my cancer would never come back. It's been a long year since then but an amazing one. I am so lucky for the family and friends I have. I can't wait to see what the next year of remission brings me. 

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I'm Baaaccckkkk!!

     I'm baaaccckkkkk! It's been a long few weeks since my last blog but I've had a good reason. I was in a huge amount of pain and trying to bite through the pain and do as much as I could before surgery would make those activities impossibly for a few a months. I'm on my 5th day after surgery and on my counts down until November 15th for the next one.

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