Cancer has become so well known that each month of the year has several specific cancers designated to it to raise awareness.
Posted on 10/3/15
By Melissa Anderson
September was Childhood Cancer Awareness month and for one family in Langdon, the last two weeks have been a worst nightmare made into reality.
The Freer family has faced difficulties before in regards to their son, John, who is a second grader at Langdon Area Elementary School (LAES) this year. John is one tough seven year old as he has battled cancer not once, but twice in his young life. In 2011, John was diagnosed with neuroblastoma which he successfully fought into remission. John enjoyed being a kid for the past two years but on September 10, he and his family received the news that the cancer had returned. The cancer was stage four and all over his body.
“Basically, they found a tumor on his skull pushing his skull into his brain. It came back more aggressive this time, and it is also in his bone marrow and all over from head to toe,”John’s mother, Carey Freer, said.
Neuroblastoma is cancer that starts in young nerve cells called neuroblasts. In a healthy child, these cells become the nerves that control functions such as heartbeat and blood pressure and the way a child’s body reacts to stress. In neuroblastoma, the neuroblasts never mature. Instead, they divide and grow into tumors.
Most often, these tumors start in the nerves of the adrenal glands. These glands sit on top of the kidneys and release hormones that control the sympathetic nervous system. This part of the nervous system controls heartbeat, blood pressure and reactions to stress. However, these tumors can begin in any part of the body. The chest, neck, pelvis and spinal cord are other common places for them.
As the disease goes on, it can spread (metastasize) to other areas of the body. It usually spreads to the lymph nodes (part of the immune system), bones, bone marrow (where blood cells are made), liver or skin.
“When I told him while he was in the hospital, we cried together. He said he doesn’t want cancer again, that he wants to be at home. He misses Daddy and his brothers. He is very vocal this time on how he feels and what he wants which is good,” Carey said.
As John and his family prepare themselves for another battle with cancer and all that it entails, the entire family is doing as well can be as expected.
“We are taking one day at a time and enjoying every moment with each other when we are home together,” Carey said.
Shortly after the news came that the cancer had returned, Sanford Children’s Hospital School Reentry Program held a presentation with John’s school mates at LAES to explain the situation to them through a special presentation called Monkey in My Chair.
“It’s really an opportunity to go in to these schools and teach and reduce the stigma that cancer has. It’s really looking at that and making sure that they know and understand, introducing those concepts to these kids and keeping John connected with the school,” Jessica Hotchkiss, Certified Childs Life Specialist at Sanford Children’s Hospital, said.
The presentation was given by a Sanford Certified Child Life Specialist and a nurse. During the presentation the nurse and specialist explained to the students what cancer was and how it could affect John.
“We are trying to shed more light on this to bridge that gap between hospital and school. We want for kids to have resources and the teachers to have a way to get answers,” Hotchkiss said.
The Monkey in My Chair kit included a large stuffed monkey that takes John’s place in school when he is unable to attend in person. This is to remind his classmates that John is still a part of the class even when he is not present physically. John also received a smaller monkey to have with him so he can stay connected to his classmates.The teacher isn’t left out as they receive a book that can help them answer questions that their students may have about John.
“The school monkey is a way for the students to keep John in the classroom and part of this class because that’s where John wants to be,”Hotchkiss said.
Child Life Specialists at Sanford are a well-kept secret whose purpose is to help children and their families cope with the emotional, developmental and social changes brought about by illness, injury or hospitalization.
“When kids go through something like this, it takes a toll on them. Our job as child life specialists is to help them get through this whatever way we can. We want this hospital to feel like what it would be like at home. Play is the work of children and it really allows kids to be kids,” Hotchkiss said
The specialists, like Hotchkiss, focus on easing children’s fears and helping them cope through age-specific play, preparation and therapeutic activities. They also are there to provide emotional and educational support to parents and siblings. Through a variety of programs, activities, and support groups, the specialists make sure that every child is empowered and supported at Sanford Children’s Hospitals.
“The medical staff does not have the time to do as much as may be needed so that’s where we come in. We help them [children] vent and process what is going on, and it gives this extra special ‘oomph’ to help families get through this,” Hotchkiss said.
A test conducted showed that the cancer is all over John’s body in his bones. The cancer is in his skull around the brain, in his bone marrow, and in his joints. Neuroblastoma is a type of cancer that attacks the skeleton.
“All his organs are good, none by the adrenal gland this time, and his spine is good.The tumor they found is on his skull and it is pushing on John’s brain,” Carey stated.
One possible treatment that is still waiting to be confirmed is an experimental drug called Nifurtimox. This new drug will be used in conjunction with the chemotherapy treatment that John is already undergoing. Currently John’s treatment consists of two chemo drugs that were used during his last bout with this cancer.
“They are using Cyclophasmide and Topotecan. They used these two before on John and they worked,” Carey said.
One of these chemo drugs attacks the cancer cells as the other one attacks the source, and it won’t be able to heal its self. The doctors overseeing John’s care informed Carey that the Nifurtimox cannot be used until John has had 3 weeks of chemo.
“Hopefully by then they will have the Nifurtimox on hand so we can use it,” Carey said.
The Child Care Specialists will help John as he goes through this recent treatment, both in understanding what the treatments are and will do but also in helping him to understand and vent through medical and therapeutic play.
The specialists use medical play as a way to help the children undergoing medical procedures to understand what is happening to them during the different procedures or any treatments. The specialists use the medical play as a way to help the child feel more comfortable with both the procedures and medical equipment. The difference between therapeutic play and medical play, notes Hotchkiss, is that medical play is more targeted with the goal of helping the child deal with whatever procedure or treatment they may have to endure, whereas therapeutic play is really about allowing that child be a child.
“Being in a hospital environment, it can be easy to forget how important play is. We use play as a communication tool with children. Play is the work of children and we really want to maintain that important developmental piece when they come to us,” Hotchkiss stated.
The goal of therapeutic play is to stop any chance of regression in regards to social and emotional well-being. Instead, through therapeutic play, the child can continue to develop as they would outside of the hospital environment.
“Kids are not always able to tell us how frustrated, upset, anxious, or nervous they are, but we can determine that through their play and then use it as a therapeutic tool to help them cope with what they are going through or feeling,” Hotchkiss explained.
As John undergoes various procedures to keep him healthy -from blood transfusions to keep his blood counts up to the insertion of a Mickey button, which is a type of feeding tube.
As John and mom, Carey, are in Fargo getting John his treatments, the rest of the family is home. John’s father, Rory, is home with his older brothers, Edward and Brock, to maintain some normalcy for the family. While nothing is normal about the situation, one thing that is for the three boys is school work.
“They [Edward and Brock] are still going to school. When John and I come home, he will go to school as long as his counts are good,” Carey said.
There is no doubt that the place John would most like to be is in school with his friends and brothers. Being in the hospital does not stop John from learning. A tutor comes in to assist John with his school work for about an hour several days a week.
Help with school work isn’t the only assistance John is receiving. Shelle Aberle, a family friend, has been instrumental in helping the family get through these first few weeks by organizing and helping keep others up-to-date with John. Aberle, who is a retired troop support organizer, is using her skills and resources to assist the Freer family in their time of need.
“I can get things done fairly quickly just by making a phone call. Right now, I’m just taking care of the little things and putting out small fires,” Aberle said.
Thanks to Aberle’s efforts the Freers burden has been lightened a little. One method was a Take Them a Meal campaign, which will provide Rory and the older boys meals three days a week. The campaign was so succesful that community members have filled every slot to the middle of December. Aberle has many fundraising ideas and ways to help the Freers so they don’t need to rely on their friends for financial assistance.
“There are resources out there so you don’t have to tap into your friends,” Aberle said .
With none of the minor details to worry about such as what to have for supper, the family can focus on getting John’s cancer back into remission. The Freer family, as a whole, however realizes just how important having support outside the family can be.
“Rory, Edward, Brock, John, and I would like to thank everyone for their prayers, support, and for just being there for us in our time of need! It just touches our hearts on how this community pulls together in situations like these. This proves that none of us are alone. Keep praying and may God bless you all for blessing our family. Thank you, everyone,” Carey said.
To keep up to date with John and how he is doing, please visit www.caringbridge.org/visit/johnfreer or find his support page on Facebook by searching for Freer Support.