You know that feeling we have when someone we love gets hurt?
The desire to take their pain away…
The willingness to take it upon ourselves if necessary…
The need to reassure them that it will all be ok soon…
These are feelings that almost every parent experiences at some point in their lives. We want to make things better. We want the hard parts to be over. We are generally able to tell our babies that it’s only temporary and that life will be good again. Hopefully we can distract or appease the injured party with a treat of some sort…and the rough spot passes.
Sometimes though…that’s not what happens.
Sometimes life hits hard. It hits our babies really hard, and there is no way to kiss it and make it better.
Megan Guodace knows exactly how it feels. In October of 2009 she received a call from her son’s school. They said that Easton, a kindergarten student, was screaming and crying and that the right side of his face seemed to be causing him a lot of pain. When she went to pick him up she examined him and found no obvious signs of injury, but knew instinctively that something was wrong and took him immediately to the Emergency Room. The CAT scan didn’t show anything abnormal so they went home. Over the next few weeks however, Easton’s condition worsened quickly. He battled headaches and kept throwing up, but nobody in town was able to help her figure out what was going wrong. The doctors said he had asthma and acid reflux, but that is where the diagnoses ended. Finally, after working all day and coming home to her very miserable and sick little boy, Megan knew she’d had enough and loaded him into the car. She and her father drove him up to the children’s hospital in Kansas City.
The doctor that examined Easton upon arrival sensed that something was wrong and agreed to admit him. That night Easton stopped breathing, but the medical team was able to save him. Another CAT scan was ordered and a battery of tests was being run. Megan paced the hospital room all night as the team struggled to discover what was going on with her little boy.
After being up all night long I remember the doctor coming into the room and telling me that she had some bad news. I responded with, “What…you still don’t have any answers?” The doctor took my hand and said, “No. He has a brain tumor and it’s pretty bad.” I remember falling to the floor, completely helpless. I couldn’t catch my breath. I was not prepared for that. She (the doctor) and some staff took me into another room, trying to calm me down and explain things to me. I remember looking at the scan and seeing how BIG the tumor was!
The reason that no one had known about this tumor earlier is that the scan Easton had done several weeks prior had not included the bottom part of his head and neck, which is where the tumor was located. It was wrapped around his brainstem and cervical spine. The neurosurgeon told Megan that it was a miracle Easton was still alive.
I remember him telling us that no one would operate on him, and to just take him home and enjoy our time with him. I refused to take that for an answer. This is my child. He is my world!
Friends and family came up to Kansas City to support them. They decided to send Easton’s records to some other hospitals to get ideas and opinions. After two eternal days, the phone rang. It was Dr. Leonard at Children’s Hospital in St. Louis. Megan remembers the conversation clearly:
The voice on the other end said so calmly, “Hi. My name is Jeff and I want to help you with your son.”
The doctor explained that he believed Easton had a type of tumor called a ganglioglioma, but needed to do a biopsy to make sure. He asked the family to come to St. Louis immediately, so the next morning they left Kansas City and drove straight there. Once they were admitted and got Easton situated on the neurology floor Megan had another scary experience. For the first time in her life she had a panic attack. She couldn’t catch her breath as her mind began truly processing all that could happen to her son.
My world was falling apart around me…I remember thinking that Easton was going to come out of surgery and not the be same child. I had the nurses page Dr Leonard. When he met me I told him that this child is my world and that I could not live without him. He responded to me, “And now he’s mine.” These words confirmed to my heart that we were in the right place. I tried to calm down and suck it up before I went back in to see Easton.
The next morning the doctor performed an 8-hour surgery to remove a piece of Easton’s skull and retrieve a tiny piece of the tumor. The biopsy results confirmed Dr. Leonard’s suspicions: it was a ganglioglioma and had probably been there since his birth. Because it was slow growing, there had been no obvious symptoms before this time. The best news? The doctors believed it was treatable! They didn’t want to operate, but they felt that a combination of chemotherapy and radiation could help Easton. With a plan in place Megan’s spirits rose.
Fight mode set in once again. We were determined to beat this!! Although he was very frail and weak, Easton never complained. We were in this fight together.
Megan and Easton temporarily moved to St. Louis to begin treatment. After almost two months Easton seemed to be doing better. They moved back home and he became more energetic and finally gained back some of his weight. Then, on Mother’s Day of 2010, life suddenly hit hard again. That morning Easton was lying in his mother’s bed when he started having seizures. Megan’s “mama heart” knew that she was about to lose him. An ambulance rushed him to the local hospital and his medical team in St Louis was alerted. Easton left on a plane with six physicians to get him to St Louis as quickly as possible. His parents weren’t able to fly with him, so they made the longest five-hour drive of their lives across the state, hoping and praying that their baby’s strength and God’s grace would give them more time.
When the family arrived in St. Louis the team of doctors was waiting for them and Megan had to have what she describes as the hardest talk of her life.
They told me that his tumor had grown and that the only choice was surgery…but we had been told this whole time that surgery wasn’t even an option. They told me there was a chance he may not make it through surgery. They told me he may not come out the same. They told me he would most likely have to have a feeding tube and a tracheostomy. They had to prepare me for the worst.
As the doctors prepared Megan for what was about to happen, her strength began to crumble.
This whole time (that he had been sick) I tried not to be upset in front of Easton. I would have to leave the room at times but I would never break down in front of him. I didn’t want him to be scared. That day…I cried in front of hm. I just cried and held him
At that moment, little five-year old Easton looked at his mom and said, “Mom, I don’t know why you’re crying. I’m not going anywhere.”
These words, spoken in complete trust and innocence, astounded and calmed his mother.
I knew that God was speaking through Easton. I became calm again, and had complete trust that He was in control and that everything was going to be ok.
The next day Dr. Leonard performed a 12-hour surgery in which he removed 50% of the tumor. They told the family that Easton would be on a ventilator for several days, and if and when he woke up they would have to see from there how he was doing. The next morning Easton woke up on his own! Although he couldn’t talk, he kept motioning and asking for the remote control to his favorite video game! In-patient rehabilitation helped Easton learn to eat and walk again. His spirit and determination amazed both his family and the medical team.
After about four weeks Easton was able to go back home. Megan couldn’t believe the beautiful blessings she was being given!
Things weren’t all easy and rosy after that. A few years later the medical team determined that Easton would need a tracheostomy. Apparently the side effects of the radiation had lowered his breathing rate so much that he wasn’t getting the necessary amount of oxygen for his little body. Megan had to sit down with her son, who had been through so much already, and tell him about how his life was going to change once again. But, with her characteristic strength and fighting spirit, she was able to help her son cope with the upcoming changes.
I remember Easton asking me, “How did I get this tumor?” I replied, “I don’t know but I am determined to find a cure for it.”
The summer before Easton was to receive the tracheostomy his family took him on trips and vacations. They tried to allow him to do as much swimming as possible, since he wouldn’t be able to go under water ever again after the surgery. Even though she knew how necessary this surgery was for her son, it was horribly difficult to face the realization of how much things would change. Megan realized that this was a price that had to be paid to keep her son as well as possible, and so she stood strong to allow that to happen.
These days life for Megan’s family revolves around keeping Easton as healthy as he can be. Much of this involves the intricacies of tracheostomy care and perfecting the use of a ventilator. Easton needs medications at least four times a day and has to go to St. Louis every 6-9 months for follow-up scans to make sure the tumor isn’t growing. Numerous doctor appointments between the scans mean that cancer is never far from their thoughts. Oh…and all these things are happening between the crazy chaos that comes with the “normal life” of running a family with a smart, funny, kind and sensitive 12-year-old, his little sister and big brother, and the family dog.
Megan says that throughout Easton’s struggles it became very obvious that God was taking care of every detail. From the check that came in for the exact amount needed for a temporary rental, to Easton’s prophetic words the night before his big surgery…God has shown Himself in every step of the way.
God was showing us the important things in life. Things like quality time with our family and trying to live life to the fullest! There were times I couldn’t help but think that if I were to ever lose him, had I done everything I could and shown him everything within my means?
Megan works to do what all good mothers do….to give her children the best life possible. For her that means more than fixing nutritional meals and making sure he does his best at school. It also means giving her son as much normalcy as possible, and instilling him with the courage and strength to keep fighting. She has learned to take life as it comes, day by day.
Some days are really good and some days are really bad! I still have my moments of weakness and breakdowns…especially when Easton is sick or is struggling. This has definitely put life into perspective. The best way to describe it is a beautiful disaster. I wouldn’t wish this on anyone, but through this journey God has shown me the important things in life and it has made me a better mother.
Please share this post and spread awareness…the more we know the more we can do!
One thing sweet Easton noticed during his numerous hospital stays was that many of the kids on his floor did not have any extra clothes to change into. They had been brought to the hospital so suddenly and so much attention was focused on the medical side of things that no one had thought about clean pajamas for them. Easton came up with the idea to bring extra PJ’s with him the next time they came to the hospital, and thus Operation Jammies was born. Through the generosity of Easton’s community, hundreds of pairs of PJs have been distributed to kids in the hospital who needed them. These jammies have been a source of light in what can be an awfully scary place. If you’re interested in hearing more about this operation, or would like to send some PJs yourself…please contact Easton’s mom Megan at: email@example.com