Philadelphia Magazine: Health Hero Challenge

Being nominated for Philadelphia Magazine’s Health Hero is an honor of which I feel completely unworthy. Not only are my fears innumerable, they are at times pathologic and include an irrational fear of escalators (really.)

So, I have decided to dedicate the 30 days leading up to #BWPhealthhero voting to TRUE heroes.

Since we are in the midst of Childhood Cancer Awareness Month, I am asking you to nominate childhood cancer fighters. These kids are as bold and brave as they come.

I will profile one child every day till voting opens. After discussing with our BOD, we have decided that if we win this award, Team CMMD Foundation will earmark EVERY DOLLAR of the prize to either a childhood cancer research charity or to a family who has a little one fighting cancer. First place comes with a $7500 cash award. Imagine the difference that amount of money could make?

I need thirty names and stories. Please include as much information, links etc. Feel free to leave a comment or PM me.

I am proud of countless things on this team, add #CMMDhealthhero to the long list. Thank you all so much for sharing this with me.
hero graphic

Comments

  1. Coach Lydia says:

    I met Hayley when she was a sixth grader in the autumn of 2010 at Girls GO Golfing. It was a volunteer junior girls golf initiative I started in September, 2008 in Hunterdon County New Jersey.

    At the time, I was the head coach of the local high school’s varsity girls golf team. Her sister Taylor as well as her cousin Brooke were on the team. Hayley and her other cousin (Brooke’s sister) Tara became participants in my Girls Go Golfing junior girls golf program.

    Her 17th birthday was on September 11, 2015. Currently, she is at Hillcrest School in MN with her cousins Tara (Ferenczy) and Faith.

    Hayley and her family are amazing people.

    Recently, they had to deactivate the COMET fund which they had started to help with Hayley’s medical bills because they need to keep MINIMUM of $20,000 in it according to mom Laurie.

    Below you will find updates from her family’s CHOP CAREPAGES blog ( you have to create an account to read the posts so I have included them below:)

    http://www.carepages.com/carepages/Healing4Hayley/updates/3794840?client_code=chop&ipc=mur

    This log starts in 2011

    Hayley is a bright, energetic and sensitive young lady that brings a smile all who know her. She loves to sing,act, and play golf. She knows the Lord and trusts in Him completely.
    Hayley’s fans have created another web page where friends and family can go to see about how they can lend a helping hand. The website is lotsahelpinghands.com under healing4hayley.

    Hayley’s health story has been going on for over a year (this was a post from 2011.) She had been back and forth to the doctors trying to find out why she was feeling ill, looking pale, having an abnormally fast heart rate, high blood pressure, and low body weight. Multiple tests and procedures were performed, Hayley was put on medication for her heart rate and blood pressure while doctors tried to find out what was causing her health issues. First her kidneys were thought to be her problem and then it was her endocrine system. Multiple tests, including genetic testing eliminated those issues. In the interim, Hayley lost her appetite and started having insomnia and back and head pain. She was admitted to CHOP in late Jan. 2011 and spent a week in the hospital where her pain was treated with drugs and she received a NG feeding tube and was released. She was admitted to CHOP again 4 days after her release on 2/9/11 with blurry and double vision. A CT scan of her head noted hydrocephalus and a tumor which was confirmed by a further MRI. She was scheduled for brain surgery (ETV) on Fri. 2/11 to relieve the pressure on her brain and then a craniotomy on Mon. 2/14 for resection and biopsy of the tumor. A subsequent MRI of her spine indicated 10-15 lesions on her spine.

    Thursday 2/17/11 Hayley was diagnosed with a high risk pineoblastoma. Hayley’s treatment was performed at CHOP and following the St. Jude’s SJMB03 treatment protocol. Her treatment required harvesting of her stem cells before her start of 6 weeks of daily (Monday-Friday) cranial/spinal radiation including proton therapy. Hayley left each day at 5:45 A.M. for her daily radiation treatment and usually had extra appointments at CHOP after her radiation, so she got home in the afternoon each day. Her radiation lasted until the end of April. She then had a planned 6 week break and then in mid June started a 4 month high dose/high frequency chemotherapy process involving receiving chemotherapy inpatient for about three weeks and then receiving 2 million of her stem cells during a rescue process thereafter each dose. Hayley spent three weeks inpatient each month during her high dose chemotherapy. During her inpatient stays, Hayley’s doctors would closely monitor her white and red blood cell counts as they would drop and eventually bottom out at zero where set would be at greatest risk for infections. These zero levels would typically last for about a week and at this time Hayley would be confined to her room and would receive regular blood and platelet transfusions. Typically in her third week of treatment Hayley’s blood levels would rise to an acceptable level and she would be able to come home to rest up for the start of her next 28-day treatment cycle.
    Hayley was cleared to return to school part time in January. Hayley is currently attending school full time as of mid March.
    Update: February 2013. Hayley is currently a freshman in high school and enjoying good health.
    Update: August 2013. A routine MRI has discovered multiple tumors in Hayley’s spine. Hayley started a 12 month three drug chemotherapy treatment of Temodar, Avastin, and Irinotecan. Hayley is taking anti-nausea medicines during her treatment for comfort. It is a constant challenge for her to keep he weight up during her current treatment.
    Hayley has had a full response to her current treatment and currently has a clean MRI of her spine. She has been considered a excellent candidate for an intrathecal antibody protocol at Sloan and the plan would be for her to have this treatment after completing her current chemotherapy this summer.
    Update: August 2014
    Hayley successfully completed her 12 month chemotherapy and continues to have a complete response. At the end of August Hayley started an Intracathel Radioimmunotherapy treatment protocol from Memorial Sloan-Kettering Cancer Center. She will receive monoclonal antibodies with liquid radiation attached to them. These antibodies are specially designed to attach to cancer cells. The attached radiation is designed to kill the cancer cells without damaging the normal brain and spinal tissue. The protocol requires the antibodies to be injected directly into the cranial spinal fluid. Hayley has just had surgery to implant an ommaya reservoir into her skull to serve as the port for the injection of these antibodies. She will start having antibody injections in the beginning of September.
    Update: October 2014
    Hayley completed her Intracathal Radioimmunotherapy treatment at Memorial Sloan-Kettering Cancer Center. She received 3 of the 4 scheduled doses and developed a chemically induced meningitis from the radiated antibodies. Her Sloan Doctors felt she had received an adequate dose with full coverage through her CS system and the health risk for Halyey to receive the final dose was not warranted. Hayley’s latest MRI was clear and her CHOP and Sloan Doctors are consulting on the next course of her health care. This will probably include a six month course of treatment with the chemotherapy drug Temodar along with Accutane as an anti-cancer agent. This treatment is scheduled to commence in November.

    Thursday, August 27th
    Posted Aug 27, 2015 10:29am
    Hayley is doing well in Hillcrest with her cousins, Faith and Tara. It was a long ride with a packed car and a bunch of giggling girls. They are all on the third floor, and each girl has an international roommate. Hayley’s roommate is Mirjam. Tara’s is Elisa. Faith’s is Marte. Mirjam, Elisa, and Marte are from Norway, and the girls have already invited them and a few others home for Thanksgiving and Christmas. They are loving this amazing Christian school that God has blessed them and their siblings and cousins with attending. We are also blessed to have Uncle Craig there to watch over our three babies. It was very difficult to leave them there, but we all decided that we trusted God with the decision to allow them to attend this school, so now we need to trust Him to protect them and to help them grow in their faith.
    We were tested immediately. Hayley received some bug bites which she thought were mosquito bites. She had a bad reaction and awoke with a swollen tongue and swollen face. I called Uncle Craig and asked him to take her immediately to the hospital. I called CHOP to ask what to do. They said she will be treated as a patient—not a cancer patient. She was given steroids and told to keep a food log. She felt much better and the swelling went down. The girls called us about two days later to tell us that they think it was related to Hayley’s bedding. She only seems to have reactions early in the morning and at night when she is on her bed. She has new sheets, comforter, mattress topper, etc. So, they took everything off and wiped down the mattress and put on some old sheets and blankets from home and washed and re-washed everything that was new. So far, she seems good. Those girls are so stinking smart. It’s so comforting to see how mature they are and to know that Hayley is in good hands. I love looking at how the three of them decorated their rooms with Bible verses everywhere to remind them of God’s love and guidance. Hayley has a big plaque over her bed that says, “God will fight for you. You need only be still”. Below that is the beautiful plaque that Eva sent to her with a Bible verse that reminded Eva of when she was at Hillcrest.
    I just love those three girls. Many of you have sent me messages via email, text message and carepages for the address for the girls to send cards and letters. They would love it.
    Hayley, Faith, and Tara
    c/o Hillcrest Academy
    610 Hillcrest Drive
    Fergus Falls, MN 56537
    We will be heading to Minnesota for homecoming towards the end of September for the homecoming festivities as well as to watch the three girls play volleyball with their team. Then we will take Hayley back home with us for a few days for her MRI, EKG, echocardiogram, blood tests, and her regular appointment. We are trusting God for good results. If you could just see the three of them—they are sooooo happy. Taylor told me that after we left, she spoke with the girls who got tears in their eyes and told her that they just love their new home. It was not an easy decision to allow them to go there, but we know it was the right decision—God’s decision. We pray that they continue to grow in their faith and to be able to defend their faith like their siblings and cousins. We are so excited for all of them. Hayley is really able to keep up with school, volleyball practice, homework, trips to get snacks, etc. Yes, her weight is fabulous. Thank you God.

    September 25, 2015 update
    Posted Sep 25, 2015 6:11pm
    Thanking God for a safe trip to Minnesota for Laurie, Chrissy and Donna. The Moms are all so, so happy to be visiting with Hayley, Tara and Faith. Laurie called me to say she saw Hayley and she looked great and had lots of color in her face. I couldn’t see Laurie but I know she was grinning from ear to ear being reunited with her partner in crime. We are truly thankful to our Lord that Hayley is having a great time at Hillcrest just being able to be a normal teenager. Thank you for all your prayers and asking for a safe return for the Moms and Hayley as they will be travelling back to NJ at the end of this weekend. Hayley will be having appointments, testing and an MRI. We’ll be praying for God’s continued Grace and Mercy on our sweet daughter, great test results and safe travel back to Minnesota. Finally able to make some room in the Carepages to post an updated photo. Thank you again for all your prayers.

    This is the post I wrote about Hayley at my blog:
    http://girlsgogolfing.blogspot.com/2013/08/healing-for-hayley-reboot.html

    Friday, November 27th, 2015
    Posted 35 minutes ago
    Hayley is feeling so much better than earlier this week. She enjoyed Thanksgiving at Aunt Dina’s. We went to CHOP this morning. Her platelets went up 30,000 points and her hemoglobin is also up. No need to finish getting the blood she wasn’t able to get on Monday. She’s just about back to normal. So glad to have our girl back. The nurses at CHOP were all hugging her this morning because they were so happy to see her back to the smiling girl they normally see. Thank you Karen and Frank P. for the wild caught salmon. It was such a nice surprise for Hayley. I think it is working—-platelets are up!

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