About Maddie Strong

With your help, we can drive change for the better.
Madeline (we call her Maddie) is a 17 year old high school student determined to beat Ewing Sarcoma, a rare bone cancer. Her determination has generated great support from her hometown community and many organizations throughout New England.

This is Maddie Strong!

With her family, she is dedicated to joining fellow patients everywhere to find a cure and beat cancer forever. As told by her mom Kathy, this is Maddie’s story:

Maddie and mom KathyOn Monday, May 11th, 2015 at 10 pm (one week after Madeline’s 16th birthday), Madeline came into my bedroom and complained of shooting pain in her right arm. Hearing her tell me her arm hurt, I thought she must have injured it that day and told her to take a couple Tylenol. Teary-eyed and three hours later at 1:00 am she came to my room in pain saying that the Tylenol wasn’t helping and that she couldn’t sleep. A bit concerned, I said take a couple more Tylenol. One hour later, Tuesday, May 12th at 2:00 am, Madeline came to my room crying that she couldn’t take the pain in her arm and that Tylenol was not helping at all. My intuition told me “something is wrong” because prior to that evening, I couldn’t recall Madeline ever crying or complaining about unrelenting physical pain.

Madeline and I drove to Elliot Hospital Emergency Room around 2:00 am. After a bit of waiting, they x-rayed Madeline’s arm and the two of us waited for hours lying together on a little bed, behind a curtain, until they examined the x-rays and said, “We don’t see anything but there must be something.” Now approximately 6 am, Tuesday morning (8 hours after she first told me her arm hurt), Madeline still hadn’t slept at all and they sent us home. In pain and exhausted, Madeline asked me if she could skip school and try to sleep. I agreed, brought her home, changed and went to work at Southside Middle School (Webster Elementary in the afternoon).

While at work, that morning (Tuesday), approximately 9:30 am (3.5 hours from leaving the ER), a radiologist from Elliot called my cell, while I was meeting with one of my students, in my office. I never answer my phone, at work, but when I saw Elliot, my instincts told me to answer. The radiologist asked me who we saw for MRI’s because Madeline needed one immediately, “Madeline has cancer” he said. I thought it was a strange question, “I don’t have a MRI technician but if this was your child who would you go see?” He recommended Dr. Parisien, an Orthopedic Surgical Specialist in Manchester, NH. I went home to get Madeline, called Webster and said I wouldn’t be in this afternoon and my friend Laurie, Guidance Counselor at Webster, met me at my house. Together we went to Elliot at River’s Edge where they performed an MRI with contrast. After the procedure, we brought Madeline home to get some rest as she continued to endure “shooting pain in her right arm.”

Shortly after the MRI, that afternoon, Dr. Parisien’s office called and asked me to come in first thing the next morning (Wednesday, May 13th) at 7:45 am , before he went into surgery with his first patient, to give us the results. In a self-protective mode of denial, I wasn’t panicked and thought everything was going to be fine. I even told Drew (my husband) that all was fine and I’d call him later to let him know the results. My neighbor and great friend Steph, a Nurse Practitioner at Elliot, offered to come with us for support. Honestly, I was expecting everything to be fine (“good news, all is well”).

Madeline, Steph and I arrived at Dr. Parisien’s office, at 7:45 am, Wednesday morning. I walked in with a big smile on my face awaiting good news. The receptionists and staff were extremely kind and friendly, so early in the morning. Monique, Molly’s good friend Kendra’s mom and office manager for Dr. Parisien, greeted me at the door and offered to come in with me to get the results. A couple texts and a phone call the day before from our family Pediatrician and Monique, letting me know they were there if I needed anything, went right over my head. Now that I look back, it all makes sense. They knew, felt so worried and sad for us and I didn’t have a clue. I now understand the proverb, “Ignorance is bliss.”

Madeline, Steph and I waited in the small room for Dr. Parisien to come talk to us. Madeline’s arm x-ray was on the screen. Steph gave it a glance and didn’t say anything (now she knew something was wrong and Madeline and I still had no idea). Dr. Parisien sat down on his stool, faced Madeline and I and began to talk. Much of it is a blur except, “You are going Boston Children’s tomorrow. Madeline has Ewing Sarcoma. You are going to get the best care just like my son who had cancer.” A very important piece of advice that he said to me that I am forever grateful for is, “ I have have one piece of very important advice; Make sure your other two children get plenty of attention and support too because they will also need it during this time.” I left the office feeling like all of my happiness had been sucked out of me. Kendra’s mom was waiting for me in the patient waiting area. When I saw her face, I knew she had known Madeline had cancer before me and I broke down crying, “You knew didn’t you?”, I said. With a look of incredible sadness, only a mother can understand, she looked deeply into my eyes and nodded, we hugged and we both cried. I left that office in shock, feeling an indescribable pain throughout my body, overwhelmed with a deep sadness, in denial and feeling the weight of the world on my chest.

Two days later, Thursday May 14, Drew, Madeline and I drove to Boston. We sat in the waiting area at Dana-Farber Cancer Institute in Pediatric Oncology for our first appointments starting at 2:15. That is where I wrote my first caringBridge.org entry for which I am eternally grateful to my friend Stacey C. who set up the account for us the evening of Wednesday, May 13th, the day Dr. Parisien gave us the MRI results.
Our first Boston appointment was with Dr. Megan Anderson, Dr. Elizabeth Mullen and Dr. Neekesh Dharia. Our doctor’s work at both Children’s Hospital and Dana-Farber which are connected by an enclosed walking bridge, over the street, for patients, doctors and all visitors to travel back and forth. We are eternally grateful to live in New England, so close to Boston Children’s, which is voted the #1 Pediatric Hospital in the United States.

Wednesday, May 20th (8 days after Madeline’s ER visit) results from the initial CAT scan and biopsy at Children’s were complete. Kathy, our Nurse Practitioner at Dana-Farber called us to give us the official diagnosis over the phone. Madeline had Ewing Sarcoma, a rare form of bone cancer. At this point, without a PET scan and bone scan they didn’t know if it was in her bone marrow or contained in her “right humerus and arm”. We went in for scans and an Echocardiogram the following day, on Thursday, May 21st and to meet with our team to discuss treatment options. The surgery to insert the PowerPort was Tuesday, May 26th. Many other tests occurred including a bi-lateral bone aspiration and biopsy, Glomerular Filtration Rate Test and Fertility Consultation at Brigham and Women’s Hospital. Madeline’s first day of chemotherapy-Phase 3 Randomized Trial for treatment of Non-metastatic Ewing Sarcoma began Friday, May 29th.

Maddie during chemo with momMadeline finished her Induction Phase of Treatment on Saturday, August 8th (12 weeks). The goal of this phase was to destroy the majority of cancer cells and shrinking the tumor prior to surgery. Madeline did miss one cycle (2 weeks) due to low blood counts. The lost cycle added 2 weeks to the 20 week Consolidation Phase (intense phase after surgery to eliminate the remaining cancer cells and prevent resistance). The nine hour surgery, on August 28th, was a success but unfortunately the biopsy results 2 weeks post surgery indicated the 40 percent growth of the tumor was live cells. On September 12th, we met with our team to discuss our next options. Madeline was taken off the clinical trial because her tumor was unresponsive to treatment. Targeted control of the original site was now needed in the form of 6 weeks of radiation. Systemic control was also needed to target the cells that travelled since live cancer cells were found in the blood vessels of the tumor. A new regimen of chemotherapy was recommended by her oncologists as “a fresh attack and hopefully work better” for Madeline’s progressive/recurrent Ewing Sarcoma. Radiation began at Brigham and Women’s on Thursday, September 24th. The new regimen of chemotherapy began Thursday, September 17th and will continue at least a year pending no complications along they way. Every 4 cycles (12 weeks), Madeline will receive a CT scan (chest) and x-ray of her arm to ensure there is no evidence of cancer.

We are now seven months into this journey which began Monday, May 11th, one week after Madeline turned 16 (May 4th, 2015) I still have moments and days that I feel like this is all a nightmare and I’m going to wake up to find out it is not true. At these times, I remind myself that we are not given anything that we aren’t strong enough to handle and that we are given obstacles in our lives to teach us important life lessons to help us grow as human beings. In the past seven months, Madeline has had numerous tests and procedures including biopsies, PET scans, CT scans, bone scans, Echocardiograms, insertion of a Portacath (central line), 12 weeks of her first regimen of chemotherapy (Phase 3 Randomized Trial for Non-metastatic Ewing Sarcoma), 9 hour surgery removing half her humerus and shoulder joint (replacing it with a cadaver humerus and chromium-cobalt head), 6 weeks of daily radiation and a new regimen of chemotherapy (VIT, used for children with progressive or relapsed Ewing Sarcoma) that will last at least a year. I must admit and say, I am looking forward to leaving 2015 behind and moving into a new year. May this new year (2016) be a wonderful year filled with blessings, miracles, hope, love, peace and healing for our family, yours and all of your loved ones.

Keep Fighting logoWe couldn’t have done this without the love and support you have all given us and continue to give us each day.

Love, Kathy, Drew, Madeline, Molly and Mia (Rosie, Charlie & Riley too)

News About MaddieHome