By Magistra Nicolaa de Bracton
If you drop by the Pennsic Independent this year, you will see many familiar faces and some new ones. But one face you will not see this year is that of Mistress Heirusalem, our publisher for many years. She is engaged in a war of a different kind: an all-out war against the cancer that threatens her twelve-year-old daughter Patty, known in the Society as Fauna of Rivenstar.
It all started with symptoms over about two years that by themselves might be written off as normal aches and pains: severe back pain (thought to be caused by carrying a heavy backpack), numbness and tingling in the arms and legs, and occasional nausea and bouts of throwing up. “Her doctor thought she might be having migraines—I have migraines with similar symptoms,” said Mistress Heirusalem. But in February of this year, Patty began stumbling and having difficulty walking. An appointment was made with a neurologist for early March, but that was accelerated due to a sudden worsening of symptoms, and Patty was sent to the hospital for an MRI. The results of the MRI showed three tumors, including one that required immediate surgery to avoid possible permanent paralysis.
“The surgery took three and a half hours,” Mistress Heirusalem wrote in her journal. “ They literally removed the back part of several vertebrae, peeled most of the tumor off her spinal cord, and put the vertebrae back. They then put a plate against the spinal column and wrapped something around it to hold it in place. The process is called laminoplasty.”
A couple of days later, after bone biopsies and blood tests, Patty was diagnosed with stage IV neuroblastoma. This is a very rare and aggressive form of cancer (650 cases per year) normally seen only in infants and children. Neuroblastoma causes neuroendocrine tumors and commonly originates in neural tissue in the neck, back, chest, pelvis or adrenal glands. Because early diagnosis is difficult, the cancer often spreads widely before it is found. Patty’s case was typical. Besides the tumor on her spine, there was a fist-sized tumor at the top of her right lung, others at the base and top of her spine, some in her hip bones, and one in her skull. While it is not unheard of for children Patty’s age to be diagnosed with neuroblastoma, it is extremely rare. Many factors go into determining prognosis. In Patty’s case, the initial prognosis was 50%. Because of the rarity of cases in children her age, her long-term survivability and the chance of recurrence is less well-known.
After allowing a little time for healing to begin from the surgery, Patty began her first chemotherapy session. She has since undergone a total of five rounds of chemo and two sessions of stem cell collection. According to Heirusalem, “the stem cells will be used later to help restore Patty’s immune system after her (hopefully) last and most intense round of chemotherapy. That last round will completely destroy her immune system and marrow. The stem cells will be reintroduced to Patty’s body and repopulate the destroyed marrow.”
She has also seven surgeries so far, most recently on July 25 to remove a tumor in her chest. She is expected to have at least one more surgery, then to proceed to the final round of chemo and then the stem cell transplant. She will be in isolation for about a month after that. After five to six months, the treatment will be repeated, followed by radiation therapy. Mistress Heirusalem notes that although the chemotherapy did not shrink the tumors as had been hoped, Patty has beaten the odds before. The family was told to expect she would never walk again, and yet “she beat the odds on that handily and went from wheelchair to walker to climbing staircases within short order. While she wobbles and tired easily, she is walking very well and surprising everyone with how much more she can do all the time.” The chemo did kill the cancer in her bone marrow, and the surgeries to remove tumors have all been successful. “She has faced every step of her treatment with gusto. Her response to everything is, ‘Bring it on!’ Her attitude remains positive and cheerful (most of the time) and she is enjoying life to the fullest.”
Throughout this, the family has received an incredible amount of support from friends, family, and others who have learned of her struggles. She received the gift of an iPad early on in her treatment from the Aidan Brown Foundation, and local 4-H and Masonic groups have held fundraisers for her. The Baronies of Rivenstar and Brendoken have both held fundraisers and offered support as well.
Mistress Heirusalem’s family is not the only Pennsic Independent family touched by neuroblastoma. “Azrael ben Shemhazai, who was our Battlefield Reporter for much of the War Chronicle years, and was our Production Editor four years ago, has a four-year-old named Armand. Armand was diagnosed with this same cancer at 25 months,” notes Mistress Heirusalem. “Armand is a survivor, and the clinical trial treatments that he went through are now the standard treatments that Patty is receiving. Armand’s parents have been our strongest supporters and great resources of comfort. Armand recently had two scans that revealed a small mass on his liver. Miraculously, a CT scan a few days later (just before they were going to do a biopsy of the mass) showed that nothing was there! Armand is our hero and inspiration.”
What can you do to help? Mistress Heirusalem would encourage all to donate blood in the annual Pennsic Blood Drive in Patty’s honour. “Patty nearly missed her last surgery because of a lack of available blood. As it was, the blood was found at the last moment and she was getting the transfusion as they were wheeling her into the operating room. At this point, she’s received enough blood for a whole human body, and enough platelets for at least two people. There is always a shortage, especially of rarer blood types. That means that somewhere, right now, a doctor is desperately searching for blood in order to save someone’s life. Somewhere, it will not be available.” The Pennsic Blood Drive takes place today and Monday—and you may be able to make a donation in her honor.
How else can you help?
Afira, the wife of Mistress Heirusalem’s protégé Grizzly, started a Facebook group (http://www.facebook.com/groups/pattyrogers) to help keep folks updated on where the family are and how Patty is doing, as well as just to chat and allow Patty to interact with people while she is isolated. Afira also set up a Mealtrain page to help keep track of when they need help with meals and to allow folks to sign up. The cards and moral support from all over the Known World have been incredible. Patty also has a Caring Bridge page, caringbridge.org/visit/patriciarogers that has more in-depth information on what is going on. Armand’s page is caringbridge.org/visit/armandzefram. Theye really appreciate the notes of encouragement left there. Please visit Patty’s and Armand’s web sites when you get home. Both kids would love to hear from you. Patty loves to get cards and photos, too. Her mailing address is the same as for PI: Patty Rogers, 2204 N 950 E, Lafayette, IN 47905.
If anyone would like to make a donation directly to the family, you may inquire at the Pennsic Independent office, or at Auntie Arwen’s merchant booth (where credit card donations cam be made). Gift cards to restaurants (national chain restaurants with a presence in Indiana) would be appreciated.
All of us at the Pennsic Independent this year will have Patty’s health and recovery on our minds. Founding publisher Magistra Columella has stepped in to handle the publisher’s duties this year, and a number of Mistress Heirusalem’s family and dependents will be here helping out. We will also be running a daily photographic scavenger hunt for Patty’s fellow young people.