Being a single parent of two young boys is tough enough, but what do you do when you find out your youngest has a brain tumor? Everything you possibly can, according to Katie, Jax’s mom.
Jax was just 6 years old when he began having hand tremors last year. After the usual battery of testing, doctors determined Jax had a brain tumor. They also discovered that because of its location, they would not be able to perform surgery because it would paralyze him. Doctors began a chemotherapy regimen, but Jax did not react well to it.
“He was allergic to one of the first chemo cocktails they tried. It would knock him out for 2-3 days,” Katie explained. This added to the stress Jax was already feeling, and Katie was scared.
“Jax’s reaction to everything was really rough at first. He had nightmares and would freak out when he had to go to the hospital. They were full-on panic attacks. It was scary,” Katie recalled. On top of that, in addition to the usual hair loss associated with some chemotherapy, Jax also lost a lot of weight.
Once they adjusted his chemotherapy medication, he began to regain some of the weight he had lost. However, Jax still wasn’t sleeping in between appointments. Katie took him to visit with a Child Life Specialist at the hospital, who worked with him to explain why he needs the medicine and what was happening. It has helped.
“He’s having a much better reaction now. He’s not having anxiety before every trip to the hospital, but he still doesn’t like getting MRIs. And, he finally needs to get a haircut!” Katie said. The treatments are working. At Jax’s last MRI, they learned his tumor has decreased in size from 3.6 cm to 2.1 cm, where it is now stable. Surgery is still not an option, so they will continue with chemo treatments.
In addition to the difficulty Jax was having, his cancer treatment was causing havoc with the family’s finances. Early on in Jax’s treatment Katie had used up all of her current sick days, plus all the ones she had banked, and was now being docked when she had to take a day off. As a para-professional in the local school system, Katie’s situation grabbed the attention of the local school board, who made an unusual decision.
“They had never had an employee that had a child with cancer. So they reviewed my performance, took into consideration my years of service, and decided to add 15 sick days to my account,” Katie explained.
Amazing as that is, it did not solve another familiar problem. The hospital where Jax receives treatment is over two hours from their home.
“I finally went to my social worker at Lurie Children’s Hospital and said, between parking and gassing up my car, I can’t do this anymore. And that is when she suggested we apply to Compass to Care for help,” Katie explained.
With your help, Compass to Care has eliminated the costs of parking and gasoline needed to get Jax back and forth to his cancer treatments. Because of your generosity, Katie had this to say:
“Thank you! We appreciate it. I know that with your assistance, every week my son is getting the best possible care. If we didn’t have your help, I don’t know what I would do.”
Your donation to Compass to Care will help kids, like Jax, travel to cancer treatment.