GO GRAY IN MAY FOR BRAIN CANCER AWARENESS!!

May is Brain cancer/ tumor awareness Month. So I feel the need to raise awareness and tell our story. It's a club I never thought we would be apart of.... Easton was your typical little boy, he walked, talked & was right on target developmentally. Of course he was a little clumsy, but to me he was perfect! He was my world! Around age 2 he started having breathing issues, choking in the middle of the night, complaining of his head hurting, feeling sick to his stomach. I took him to every Doctor in town & near by and no one could figure out what was wrong. I was told its because I'm a first time mom, and it's probably just asthma.  

After one episode I remember so clear, he was at school ( Kindergarten) and the teacher called & said that Easton was screaming in pain that the right side of his face hurt, that was he might have got stung by something on the playground? I rushed to school & immediately took him to the ER, I knew it was not like him to scream like this. They performed a CT scan, did lab work, the whole 9 yards & told me everything was normal. But I had that feeling in my gut that something was wrong.  A week later the same thing happened, so again I took him to the ER, they did another CT scan, called in a ENT specialist ( who I won't name any names) and he told me that everything was normal and that my son needed to stop yelling & act like a "big boy"  Well that's only the beginning of waking up this mama bear! I refused to take that Drs. advice....
A few days later Easton was throwing up and kept telling me his head hurt. I was working at St. John's Hospital at the time and asked one of the Drs. I respected if I would be crazy to take him to Children's Mercy in Kansas City? He told me to be my childs advocate & push for answers. That night my dad & I drove Easton to Kansas City & went through the ER, the Drs instantly knew something wasn't right. Easton was then admitted for observation. Later in the night he had one of his breathing & choking episodes, that had been happening for years... Well apparently it wasn't so normal, the code team was called because his oxygen was dropping into the 50s and he stopped breathing. I explained to the Drs. that this had been happening for years and that no one would listen to me. Easton was rushed to MRI....
when he returned one of the Drs. came and sat down beside me and told me she had some bad news, I immediately thought to myself here we go again, no one knows what's wrong... but that wasn't the case this time. I can still hear the sound of her voice, she said we found a tumor in his brain and its not good. I instantly fell to the floor crying.... They picked me up, took me to another room to tried to explain things to me. My head was spinning... I asked to see the image & it was much bigger than I ever imagined. This long blob lit up at my childs brainstem & cervical spine, which controls his breathing. This finally explains so much but this was not what we were prepared for. After the Nursing staff contacted L.Dee and my husband, They came to Kansas City, along with family so we could try to make sense of where to go from here. We met with a Neurosurgeon, and he basically told us to go home and enjoy our time with him, that it was fascinating that he was even alive! Well now this mama bear is really awake and  I refused to take that for an answer, NO! we are not giving up! Our family came to the agreement that we were going to send Easton's scans and records to the top Children's Hospital all over the US and find someone who would operate. 2 days later is when I got the call that changed our life. " Hi this Jeff Leonard, from St. Louis Children's Hospital. I'm looking at Easton's scans and I would like to help you." Finally everything was clear and I knew where we were supposed to go!
We left KC, and drove straight to St. Louis. As soon as I walked into that Hospital, I was sick to my stomach.... Seeing all the sick children, wondering if Easton was going to be the same was my biggest fear... We met with Dr. Leonard and he prepared us for the biopsy, he was going to have to remove a portion of Easton's skull and it was going to be a very lengthy surgery.... My heart was racing and I went into panic mode! I remember the exact spot where I collapsed and had a full on total meltdown! I had to get it together for Easton because I didn't want him to be scared, he shouldn't have to see his mommy cry. From that point on I decided to suck it up and that I would try to never cry like that in front of him ever again. If he could be strong, so could I!
I don't think I slept at all that night before surgery, I just laid in that awful, uncomfortable Hospital bed & hugged Easton all night. I think the surgery took around 7 or 8 hours. Dr. Leonard came and told us that everything went great, but that his tumor was very hard and that it had most likely been there since birth. The next step was to let Easton recover and wait for the pathology report. I think we were in the Hospital another 2 weeks, Easton fought through all the pain & was the best patient ever! The pathology came back as a gangglioglioma, grade/ stage 2. We met with so many Doctors during that visit, once again my head was spinning and felt like I was living a nightmare! The plan was 48 weeks of Chemo, and scans every 3 months. So now we deal accepting the plan... Easton started chemo, He had it once a week. The first couple of weeks went great! He still ate, his coloring was good and we were making it through. One morning he came in my bedroom and said "Mom look!" and pulled out all this beautiful blonde hair! I was holding back the tears and told him, it wasn't his fault that the medicine made it happen. We decided to shave his head that day.

As weeks went on he was sleeping more, sometimes I had to wake him up just to eat. He was looking pale, he seemed so weak and frail. There were times we would drive all the way to Kansas City for chemo and he wouldn't even make weight. There were also times that he needed to be Hospitalized for blood transfusions. After about 11 weeks total of chemo, it was scan time and nothing had changed, I told Dr. Leonard I thought Easton was getting worse and that I couldn't sit back and watch him get weaker and weaker. So everyone decided that Radiation was the next step. Another journey to grasp... The new plan was radiation everyday for 6 weeks in St. Louis! How in the world am I supposed to make this work? I had a 2 year old at home, a family and a  job that carried my insurance! That month my dear friend & church family had a chili feed for Easton. God sure works in mysterious ways... There was enough money for me to get a furnished apartment right across from the Hospital so I could stay with Easton during radiation. I took another leave of absence from working at the Hospital and packed our bags and gave kisses to my sweet little girl and moved to St. Louis on a mission to get Easton cured. During radiation Easton did very well, or maybe it was the steroids talking! He gained weight, he felt better and things were looking up! Once he finished radiation it was time for his Make- A- Wish trip!! Finally something to look forward to! Easton wanted to go to Disney World!!! It was the best week ever! He still talks about it! He swam, had ice cream for breakfast, saw all the Disney Characters, you name it, we did it!! On the plane ride home he began telling me he didn't feel good... I thought he was just tired from a week of fun.... He rapidly declined and on Mother's Day 2010 I witnessed something I will never get out of my mind. Easton had a grand mal seizure, he wet the bed, he didn't know who I was and I thought I was loosing my son... I called 911, then called his Drs. in St. Louis. I kept asking what was going on, he's never done this before. He kept asking for his mom, but I was right there! He didn't even know me. Once we has transported by ambulance to our local Hospital, the ER drs talked with his team in St. Louis and Children's Hospital sent a plane down to Joplin to get Easton. 5 Doctors were on board and they reassured me they would take the best care of Easton but that I couldn't come. What do you mean? I will sit on the pilots lap! I'm coming!! But that didn't go over very well and we made that awful, gut wrenching 5 hour drive to St.Louis as my baby was on a plane without me....
Easton was in the PICU when we arrived, he had already gotten a scan and we got the news that the tumor had grown. I was in disbelief, how could this be? He did chemo, radiation and yet it had grown? Our backs were up against the wall and we were asked to have a sit down meeting with about 10 different Drs and staff. We were told surgery is the only option left and that it wasn't a 100% guarantee that he would make it out of surgery. I remember just crying and praying that God would guide us in making the right decision. After that meeting I got a call from work saying that I needed to go back or I was going to loose my job! Seriously?!! Horrible timing, yet without a blink I said "My son comes first, fire me!" and hung up the phone.  L.Dee and I decided to talk with Easton. We went into his room held his hands and  told him that he was going to have to have another surgery.... I was holding back the tears because I didn't want to scare him. Easton was only 6 years old at the time. He looked at L.Dee and I and told us that he wasn't going anywhere, and that we were the best parents a boy could ever have! I couldn't believe a 6 year old had the capacity to be strong for us! It was the assurance we needed to make the next step. I truly believe it was God talking through him! Easton made it through the 10 hour surgery, he was on a ventilator for about a week. He had a feeding tube, wires everywhere, machines beeping non stop. We finally made it out of the PICU onto the recovery floor where we taught him how to walk again! We spent about 2 months on that floor. He is a miracle in so many ways!
Although he ended up having to get a trach a few years later and we are still fighting this awful disease the point of sharing this is not for sympathy, but to bring awareness about this disease. About listening to your intuition. We need a cure, for Easton and for everyone fighting this battle. I can honestly tell you that this has changed my life in so many ways.... It's made me a deeper person in my faith, yes I question why, so many times but God always has his hand on us and has blessed us in more ways than we even acknowledge. I know everyone has battles they are fighting and that life can seem so unfair at times but through the storm is really when we become the strongest! We are not giving up Hope and ask for your continued prayers... they make a huge impact on our life! Thank you to all those who have supported us and continued to pray for Easton through this journey! Together we will Find A Cure!

To support Brain Cancer Awareness, and Team Easton click on the link below to order Team Easton shirts and have them shipped to you and GO GRAY IN MAY!
https://www.booster.com/teameastongrayinmay?share=8341399213050562

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Comments

4 Replies

Samantha York
By Samantha York
Wow. Thank you so incredibly much for sharing your story and Easton's story. I've been following his page for a while but didn't know all the details. Your Easton is SUCH a strong trooper! God is going to do so many wonderful things in his life. You're such a brave mommy, too! I can't imagine how scary this fight has been over the years. Praying for your sweet boy and whole family always. God bless.
Joyce Nosker
By Joyce Nosker
Thank you for sharing your story about your journey with Easton. Thank GOD for the doctors who encouraged you to advocate and push for answers.
Praying for the cure that so many children need right now!!!
Karen Calnan
By Karen S Calnan
See below!
Karen Calnan
By Karen S Calnan
Easton, you are a child of God:) We feel blessed that we were your neighbor and got to know you, your family and your story while we lived in Joplin before moving to Boston this past Dec to have care for me at Brigham. I, too, have a chronic health condition and also believe in Jesus as my Savior! We know He puts people in our lives we are to meet. We were to meet you! Since the day we heard your story we have prayed for you! We wear our Team Easton tees! We have donated at different times to help with your expenses. What you do for us is AWESOME! You are an INSPIRATION and an EXAMPLE of SUPER HERO:) Everyday when I'm talking to God about needing His strength to help me get through I see your smiling face and thumbs up:) I think, if Easton can keep doing it so can I. Praying for you and a cure xo ++