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he has passed, it has been unbelievable the outpouring of support the boys and I have been getting.”
That support comes with its own challenge. Julia describes herself as “always the giver” and has always been reluctant to accept help. Even now, she finds it somewhat difficult to accept help, but describes it as a “learning process”. She advises others who are going through difficult times to accept any help that is offered.
“Don’t be afraid to ask for support or accept support,” she says. “Be the best you can be.”
Prior to his passing, Kim was very active in the brain cancer community, organizing a Novocure support group to meet every two months and staying very active in online for support groups; answering questions and giving other patients his experiences with the treatment and the things he had found that made the experience easier to manage.
Julia has done the same as her husband. She is currently in touch with 70 wives of patients with Glioblastoma and is always surprised at how differently the same cancer can affect different people. Each person has a different diagnosis, a different treatment and a different response. Julia is now trying to help these women, who have yet to go through the phases of battle she has experienced, prepare to support their husbands and is doing so with words of encouragement or advice, and by simply sharing her own experiences or by being a source of comfort. She continues to learn a great deal from others.
“Never give up hope” is Julia’s emphatic assertion. “Every patient is different. Every diagnosis is different. Never give up hope.”
The brain cancer community has benefitted not only from Julia and Kim’s advice and support, but also in much more physical and tangible ways through the medical community. Dr. Lacroix says that in the early stages of any new treatment, such as Novocure, every single patient is a learning experience. Dr. Lacroix is hopeful that current research will make it approved for use from the very beginning of a diagnosis. For that, doctors need to demonstrate proficiency of the treatment and make it compatible with other treatments. It is here that Kim and his willingness to use be part of the trial, played a huge role. Kim had also decided to donate his body to research because he wanted more people to take advantage of his experience.
“In the end, you do the best you can with what you have.” said LaCroix “We have made tremendous progress in the way we treat these types of tumors and that is very encouraging. We have learned a lot from Kim.”
Even after he is no longer here to physically impact those around him, Kim continues to have an effect. Julia still keeps in contact with Kim’s nurses and they tell her that not a day when the oncologists don’t mention Kim’s name. For them, she says, he was more than just a patient because of his positive outlook and strength.
“Kim always said that if his diagnosis, treatment, trials would help one more person, it was definitely worth it.”
Julia, who was part of a Relay for Life team in past years, has been approached to start her own team and has named it “Candles for Kim”. She is currently working to raise funds for cancer research as that team’s leader. She is currently selling homemade organic cookies and handmade greeting cards from now until May. The revenue will go to Candles for Kim. Julia, however, is more focused on simply having a large team present at the event to honor Kim and keep their efforts local. She has also continued to reach out to the clothing manufacturer, Underarmour, first contacted by Kim before his passing, in the hopes that they incorporate grey into a clothing line for brain cancer awareness in May the way they now incorporate pink for breast cancer awareness in October.
Remember, that patients diagnosed with Glioblastoma have only a 50% rate of survival for the first year after diagnosis and only a 5% survival rate at the five year mark. Kim was one of those 50% and, when interviewed last year, said he was hoping to make it to the next 5% and “see from there.” Kim’s family and friends celebrated his birthday in October with a big party in his honor. Julia said that, although it was difficult without him there, it was surprisingly fun. The family plans to continue the tradition to celebrate a wonderful man.
“We all need to live life to the fullest because you never know what is happening tomorrow,” says Julia. “You just don’t know. Kim would not want us to suffer, he would want us to live life to the fullest and enjoy it. He knows that we will keep him in our memories and hearts forever.”
If you would like to purchase some homemade gifts or join Team Candles for Kim, contact Julia Byriel through the Relay for Life website or go the team facebook page.