TEAM MADDY SWEATSHIRTS

When my daughter Madisyn was 5 years old, she got hurt on a trampoline. She was screaming in agony while we were driving to the hospital but by the time we arrived she was calm and had full range of motion so they sent us home and told us to ice it. For almost 8 weeks I took my little girl to the doctor time after time to be told it was nothing. I knew in my gut that something was wrong. Finally, one day in October of 2009 I told a local doctor that I was not leaving until an x-ray was done, something was not right. Our lives changed forever that day. What started with arm x-rays ended with a life we could have never imagined. We were told she had a large mass in her arm and that Seattle Children's Oncology team wanted to see her immediately. My mother, Madisyn and I went to the airport with one suitcase, not knowing what to expect. We said goodbye to Madisyn’s 2 year old brother, not knowing when we would see him again and we waited at the airport for the fog to lift for days, finally the US Coast Guard stepped in and Madisyn and I were airlifted to Elmendorf Air Force Base and then shuttled to the commercial terminal.
We arrived in Seattle at 3 am and were shuttled the Ronald McDonald House where we would spend the next 7 years off and on. Appointments started at 7 am and we were told to expect the worst. Madisyn had a biopsy on her 6th birthday that confirmed our worst fear. Madisyn was diagnosed with Ewing's Sarcoma of the left arm.

Patients with Ewing's sarcoma have an overall 5-year survival rate of 66%. This diagnosis required 12 months of intense chemotherapy, and too many surgeries to count. How can this be? Her little life has just begun but now she is fighting to stay alive. My mother and I spent every waking moment trying to get Madisyn to eat and drink and live. Everyone knew Madisyn back home in Kodiak, and now most of Alaska. Not only did they know in Kodiak; they ran fundraisers so we could keep our home.
We lived a normal life the best we could. We spent a lot of time at Seattle Children's Hospital, and if we weren't inpatient at the hospital, we were allowed to stay two blocks away at the Ronald McDonald House. We could not be more than 15 minutes from the hospital at any given time. We were not one of the lucky ones that got to go home on weekends. We would not return home for a year after leaving.

After 10 months and too many surgeries to count, Madisyn contracted an infection due to her weakened immune system and was admitted to the ICU with a fever of 112 Degrees. They packed her tiny little body in ice and told us that this might be the end. Like the warrior she is she fought like crazy and when she awoke in the ICU and her infection cleared up we met with her team and together we decided that Madisyn's little body couldn't handle any more.
We would not be continuing the chemotherapy protocol and would be returning to Kodiak for three months and then return to Seattle for testing to see if the cancer had returned. For three years, we flew to Seattle every three months to face two full days of testing, followed by waiting for the results to see if her cancer returned. It has not; she now 13 years old and still cancer-free.

We return once a year for her cancer testing these days. We dread these visits so much; one test, one cell, one problem equals a death sentence for Madisyn.
We visit Seattle much more often for the implant problems. Madisyn continues to have daily issues and extreme pain related to the titanium elbow implant that is now part of her arm. She has had too many surgeries to count, attempting to fix various issues with the implant and the pain it causes her.
We traveled to Seattle again last year when her pain was no longer controllable. Her implant is now sitting half in and half out of her bone. Part is resting in the soft tissue. Her little body hasn't grown enough bone mass to completely stabilize the implant. So we have been under strict instructions- no running, no jumping, no climbing, no carrying anything, a sling during all waking hours, and no PT, until they can make a new implant, get FDA Approval and perform the surgery.



We were told yesterday that the implant will not be ready and she is scheduled for amputation of her left arm on March 8.
Madisyn shows her warrior spirit every day. She wakes up in the morning, puts a smile on her face, even if she hasn’t slept the night before and proceeds about her day. She has adapted in so many ways, she uses her feet and arms in place of using her left arm, she has little to no use of it at this point. She takes Tylenol pretty much around the clock and an opioid when she needs it. The long term side effects from Chemo will forever be a part of her life but she faces each challenge with a smile of gratitude for still being able to live every day when so many of the friends she met along the way weren’t so lucky.
Madisyn has 2 brothers: a 10 year old and a 2 year old. Her diagnosis has affected every part of our lives. We don’t know what each day will hold, so we take it day by day, and spend as much time together as a family that we can. That has been a wonderful lesson for us to learn- nothing matters but spending time with your loved ones. It doesn’t matter if the laundry is folded and the house in clean- you never know what tomorrow might bring.

If there was one thing that I could tell other families it would be this. YOU are the advocate for your child- just because there is a certain protocol in place to treat your diagnosis-it may not be the best option for your child. YOU are the only one who can question that, you know your child better than anyone else, don’t let someone else choose what is best for your child. As a mother you are supposed to take your child’s pain away, but I can’t, I have to stand by and watch and I struggle with that daily. We cry together at night when the pain in her bones is the worst. We talk and I rub her legs and arms and hope the pain medication works. Then I go and face the world with a smile, it doesn’t matter if I haven’t slept in days or can’t keep my eyes open. This s the reality that we live in. A cold is not just a cold, a fever is not just a fever, and in our case an ache or pain is not just an ache or pain. Never go to bed without saying I love you. Never forget to hug your children. Never forget to kiss them and hold them tight. Never forget to let them know they are loved and let them love you.