Seven-year-old Rydder Ames of Hamilton, Ohio began having symptoms five months ago. His mother, Krista Steven took him to the ER after a week-long headache followed by a loss of coordination on his left side. Rydder was put through a series of tests and then transferred to the Cincinnati Children’s hospital where he underwent brain surgery. That was the thirteenth of April.
The surgery was performed to remove a tumorous mass. The surgeon initially thought he had removed ninety percent of the tumor but in the final analysis, only fifty-five percent of the tumor was removed.
Some Help But No Cure
According to a recent article in Yahoo News, the official diagnosis of Rydder’s rare disease is Diffuse Midline Glioma (DMG). A simple definition is that it is a tumor from the brain’s glial cells that surround the brain. The glial cells are meant to protect the brain. However, cancerous DMG cells continuously reproduce placing additional pressure on different parts of the brain, Approximately two hundred to three hundred children in the U.S. are diagnosed with DMG every year.
DMG is an aggressive, rare cancer. Symptoms may begin with headaches and loss of balance and eventually affect facial movements, speech, and swallowing.
Rydder’s DMG is primarily on his left side. He can walk but has no feeling or ability to function on that side. Prior to his surgery Rydder was unable to use his left hand.
DMG has limited treatment options. Surgery may remove some of the tumor but if the tumor is located near sensitive parts of the brain the tumor cannot be removed entirely.
Radiation may shrink the tumor but is not capable of curing it.
The Cincinnati Children’s Hospital is adding additional clinical trials in an effort to increase treatment options for DMG. Rydder has already been enrolled in a trial and is receiving experimental treatment that may limit the growth of the tumor. He is also being given steroids to lessen the pain. However, the steroids have increased his emotional outbursts and contributed to a weight gain of forty pounds.
Krista explains that an outburst is not temper but frustration when he tries to express himself. Brian, Rydder’s father, said that it is difficult to differentiate between Rydder’s behavior and that which results from steroids.
According to Brian, Rydder is handling his condition better than most adults even though he has seen several relatives succumb to cancer. To Rydder, cancer means death. He asked his parents if he had cancer and if he was going to die from it. He understands that he has a tumor and that his situation is serious.
Brian and Krista keep the conversations light. They explain that their son needs strength to fight his ordeal. Both parents have adjusted their work schedules to devote their attention to Rydder’s needs.
The couple has two other sons: Walker is nine years old and has epilepsy and nonverbal autism. Their third son is a four-year-old boy named Sawyer.
There are many adjustments for Rydder when it comes to what he can and cannot do. His brother Walker and Rydder usually played together and now neither one actually understands why it is no longer possible. Normal activities such as bike riding are out of the question for Rydder but neither boy fully understands why they cannot play games together. Walker does understand that Rydder is sick. He is waiting for his brother to get better so that they can enjoy their games again.
Four Months of Treatment
It has been five months since Rydder’s initial symptoms and four months of treatment. Patients with DMG are expected to live eight to eleven months before the malignant tumor puts pressure on various areas of the brain causing it to shut an organ down.
Help From the Community
Jerry Reardon, a local organizer, has helped the family plan an event to raise awareness of DMG and to help Rydder. Motorcyclists rode from Queen City Harley Davidson to visit Rydder at his lemonade stand, one of his favorite pastimes.
Brian points out that the generosity of his new friend Jerry Reardon is just one of the many instances of kindness and compassion that his family has experienced in these last few months.