6.11.2013

Brayden's Buddies.


I know most of you have heard me talking about Brady Bands {because I super fluffy heart love them}, I ‘found’ these bands after Amy {the creator} left a comment on one of my IG pictures and I clicked on her site and the rest is history.

What you may not know is the story behind them….


“My son Brayden was your typical four year old boy. He loved his dogs, cuddling on the couch watching cartoons with mommy and daddy, and beating up on his older brother. He was fearless and loved jumping off of things, making mommy worry constantly at the risk of broken bones. When he started to develop daily headaches we knew something was wrong. They came about slowly at first. He’d complain about his head hurting and I’d give him some tylenol then he’d go about his day as if everything was fine. But as the days passed by the headaches worsened to the point where my normally rough and tumble boy wanted to nap and stay inside at play time. After two weeks we decided it was time to take him into the pediatrician to figure out the cause of the problem. Our pediatrician thought it was a sinus infection or allergies and sent us on with an antibiotic. When his headaches continued to worsen and he started vomiting in the mornings we knew something else had to be done. On May 13, 2011 we took him in to the emergency room. At the ER they decided to perform a CT. Thirty minutes later the ER doctor came back with devastating news, our little boy had a large brain tumor. The events to follow were a whirlwind.



Brayden’s headaches were being caused by the tumor that was blocking the flow of spinal fluid that protects and cushions the brain. He was admitted immediately and surgery was scheduled for the following morning. Just the build up of pressure was enough to cause brain damage or possibly death so they wanted to monitor him closely. After speaking to the surgeon we felt a little uneasy and looked for other options. After talking to some of the other doctors we were transported to a children’s hospital an hour away where there was a team of specialized pediatric neurosurgeons waiting to take over Brayden’s case. Brayden’s surgery was scheduled for Monday morning and we waited anxiously the remainder of the weekend just hoping it would go by quickly so our baby would be okay. After ten hours of surgery they were able to remove 50% of the tumor which was sent to the lab for testing. At this point the surgeon thought the mass was benign. He also thought that Brayden would most likely need another surgery because the location made it impossible to remove all of the mass and it would most likely continue to grow back. Our heads were spinning with the thought that our son would never be able to live a normal life due to the need for multiple surgeries for a tumor that would constantly be growing back. How would he recover each time? We knew every time they cut into his brain that there was a possibility he would not come out the same or maybe not even come out of surgery at all.



We waited in the hospital for the next four days while Brayden recovered from his surgery. We were happy to see him talking and able to move normally, taking it as a sign that everything was going to be okay and that this nightmare would soon be over. On May 20th, after being in the hospital for a week the lab results came back. We were told that our son had one of the most aggressive types of brain cancer, a glioblastoma.  His surgeon sat with us for two hours answering our questions and offering apologies. He told us to hold on to hope but to not put off the things we wanted to do with Brayden because the average life span of a child who is diagnosed with glioblastoma is 12 to 24 months. We were released from the hospital that day still numb from the bad news. Brayden climbed up the stairs to his room and played with his toys the minute we got home like nothing had changed. All the while we knew he had an aggressive tumor growing in his brain and we had to think fast of what our next move would be.



We filled Brayden’s time with as many activities and memories as we could. We went to the beach often and Brayden would play in the sand and ask if we could live there. We spent every weekend taking the family to NASA to see the spaceships, the zoo to see the animals, the Natural Science museum to see the hands on exhibits and dinosaur bones, the water park to swim, the aquarium to see the fish, and many others. We traveled to take him to Sea World to get splashed by Shamu, Kings Island  to ride the rides, Newport Aquarium to pet the penguins (his favorite animal), and to see the Alamo. At Christmas we took the family on a cruise for a week because he had always had a fondness for boats. For New Years Brayden was granted a Make A Wish trip to Disney World. We stayed at Give Kids the World Village for a week and we were treated like royalty. While we were there we got to see Sea World and Universal Studios too. We made so many memories that will last a lifetime. Most importantly we brought smiles to Brayden’s face and that is worth more than all the money in the world.



After we returned from our Christmas and New Years vacations Brayden went in for a follow up MRI. The MRI showed that Brayden’s tumor was growing again and that there were new areas of concern. Brayden underwent two more surgeries in the next month, one to place a shunt to relieve the pressure from the fluid build up in his brain and one to place a mediport in his chest for him to receive his new medication. He then underwent 15 additional daily radiation treatments. Brayden’s Neuro-Oncologist put him on a different treatment plan that required him to come in to the hospital bi-weekly for IV treatment as well as taking at home medications and oral chemotherapy. This helped keep his tumors stable for a little while and even showed improvement in some areas. After missing school for a month due to hospital stays and medication side effects our lives returned to our new form of “normal”.

Shortly before Memorial Day 2012, Brayden started having some balance problems again. The first time they were medicine induced and we were hoping there was a simple explanation again this time. He went in for a follow up MRI and the next day we went back to the hospital to talk to his Neuro-Oncologist. The results were mixed some of the old spots had shrank and some new spots had appeared. At this point there were multiple spots throughout his brain and brainstem. They believed this was the cause of his balance issues. His doctor said he would think about another treatment option and to continue the one medication he was on. We asked Brayden’s doctor the tough question that no doctor ever wants to answer, how bad is it and how long do you think we have. He said it wasn’t good but that he didn’t see why Brayden wouldn’t be here through the summer. I took Brayden to the last day of school see his friends. I had to push him in his wheelchair because he was too off balance to walk. He smiled and hugged all of his friends and teachers. I tried to fight the tears as people around me told me to have a great summer, as I knew it was going to be the worst summer of my life. I lost all control of my tears as Brayden’s teacher gave me one last knowing hug goodbye.



At this point Brayden was also having problem keeping his food down at times. We tried multiple anti-nausea medications but nothing seemed to help. We called Brayden’s medical team on friday June 1st to see what else we could do to keep the food down and they gave us some new meds and told us to call on monday if it didn't get better. On monday nothing had improved so I called the doctor. The words I heard next shattered any remaining hope I had left. I fought back the sobs as his doctor proceeded to tell me that there was nothing more they could do and that it was time to set up hospice care for Brayden. He told me how sorry he was and that we could come into the hospital for a night or two until they helped us get hospice set up if we liked.

As we went to the hospital one last time it felt surreal. The place had become like a second home. We had made many friends over our 13 months there. Knowing it would be the last time was bittersweet. Most families long for the day that they never have to return to the hospital, for us it symbolized the end of our son’s fight. We stayed one night while they made arrangements. The day we were to checkout of the hospital for the last time we had countless visits from the staff that we now called friends at the hospital. It was as if everyone was coming to pay their last respects and they all had beautiful things to say about how Brayden had impacted their lives. We went home to spend the rest of Brayden’s days with the people and things that he loved, not knowing how many days that would be. The days that would follow are the worst days of my life. I watched my beautiful boy stop talking, stop eating, and lose his ability to move. I fed him through his tube for days and watched him struggle to breathe on his last day. I have never felt so helpless in my life.

On June 18, 2012, after 13 days in hospice care, our precious son passed away. I held him in my arms alone in his room as he took his last breath. I told him it was okay and that mommy would never leave him, that we would always be together as he passed away. I called my husband on his way to work to tell him that Brayden had passed and all I could manage were sobs. He instantly knew what had happened without a word and he turned around to come home. I held him for the last time for almost an hour as I waited for my husband to make it home. I kissed his little blue lips and wished I could get just one more of his famous hugs. When they came to take him away the finality of it all made it hard to breathe. We had countless calls to make and arrangements to make for his funeral back in Ohio. The next day we were on a plane headed back to say goodbye for the last time.



September is National Childhood Cancer awareness month. 46 children are diagnosed each day and 7 children die each day from cancer. Unfortunately even though cancer is the number one killer of kids 15 and under (more than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined) childhood cancer gains little attention. Their month gets over shadowed at least half way through by the appearance of pink ribbons everywhere. While I am not belittling the seriousness of breast cancer or the need for a cure in anyway the fact remains that funding for breast cancer is more than 10 times that for the funding allotted for childhood cancer research. The 5 year survival rate for childhood cancer is still less than 80% compared to the over 90% 5 year survival rate for breast cancer if it is detected early. Also I think everyone would agree that a 5 year survivor when you are talking about a 5 year old child is hardly cured. Another problem is that the aren't environmental risk factors for most childhood cancers unlike most adult cancers. Most childhood cancers are caused by random DNA mutations and can not be prevented. In children, by the time the cancer is diagnosed it is already in an advanced stage or has spread to other areas. Those lucky kids who do survive often face physical and neurocognitive disabilities resulting from treatment may prevent them from fully participating in school, social activities and eventually work. Hardly sounds like being cured to me. I hope that this has opened all of your eyes to the seriousness of this problem. Please don’t wait like me until it affects your family personally before getting involved. The “its not my child” mentality is what is keeping childhood cancer from getting the recognition and therefore funding it needs to stop this horrible loss from happening to another family. I continue to fight on in Brayden’s honor for a cure because it is what he would have wanted, for no child to be sick like him.”

I really feel that my blog has led me in certain directions and connected me with certain people; Amy is at the top of that list. I can’t even begin to imagine going through everything she has, much less starting a business and becoming the advocate she has for childhood cancer. Amy donates at least 10% of every sale to CureSearch to support research for finding a cure.

When I heard she was shaving her hair to raise money, I knew I wanted to help.



Look at that gorgeous hair! Amy continues to amaze me with her drive to bring awareness. The shave is taking place June 30th at noon at the Arneson River Theatre in San Antonio, TX. There are 46 cancer mom’s who’s child is either fighting cancer or has passed away from it. 46 symbolizes the 46 children who are diagnosed with cancer each day in the US. This is the 4th year that a team of 46 moms have done a shave in support of St Baldrick's. The goal is for all the moms to raise $131,313 collectively.

I’m asking you for your help to raise some money for these brave Mom’s and their kiddos. You can donate by clicking Brayden’s Buddies.

You can also support Amy by checking out her {amazing} Brady Bands.

A little love never hurt, so if you are feeling the need to shout out some support head on over to her Facebook page.

Please share this link anywhere you can, lets all help raise money for this special kids and their families!!

21 comments:

  1. Everytime I read Amy's story I bust out crying! I love Brady bands and I love what she is doing to spread the word. You are one strong momma Amy!

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  2. I can't even begin to imagine this happening! As I'm typing I'm wiping away my tears. I will definitely be helping spread the news of this and will be getting Brady Bands!!! Thank you for sharing her story and bringing awareness to childhood cancer

    xoxo

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  3. What an amazing story, now that I have a little boy of my own these stories hit me much harder. The guys at work are going to wonder why I have tears in my eyes.
    Amy sounds like an amazing person!

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  4. Thank you Megan for sharing Brayden's story. I am a mother of a son and I am sitting her bawling at this story. Its amazing out of all of that Brayden's mom is still fighting to help other children. I'm so honored to be able to help in a small way.

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  5. Ok... I need to get it together after reading that. What a beautifully sad story! As a parent I can't begin to imagine.. It makes me sick! What a brave family!

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  6. Ok... I need to get it together after reading that. What a beautifully sad story! As a parent I can't begin to imagine.. It makes me sick! What a brave family!

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  7. Oh, I just cried at the office. Tears streaming down my face ugly cry. I can't even imagine.

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  8. This honestly breaks my heart. I just want to cry for Brayden and his family. Childhood cancer is incredibly unfair. My cousin died at 22 due to cancer and she had just started her life with her husband. And she was 22!! This story really tugs at my heart and I have bought 3 bands from Brady bands already, but I will definitely be buying more from her. THANK YOU SO MUCH FOR SHARING YOUR STORY!!

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  9. I have heard a lot about these Brady Bands on your site but never knew the story behind them. Thank you SkinnyMeg for sharing this touching story with us all and bringing attention to this cause. I will be supporting anyway I can.

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  10. Wow. That was heartbreaking. I have two kids and can't even imagine going through something like that. Thanks for sharing.

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  11. My heart hurts for her, and for all those that have lost a child or are dealing with cancer in their child. I don't know how I'd deal with such devestation. I admire her strength and her drive to make things better for everyone else. Thank you for sharing her story.

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  12. This story breaks my heart :( Children should never get cancer. period. So sad. She is a true warrior and so brave to continue to fight for this important cause. I shared the link on FB to spread awareness. XO

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  13. balling my eyes out! I will continue to buy Brady bands and send friends your way!!!
    xoxoxoxo

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  14. Thank you so much for this post..I was literally sobbing by the end. What an amazing family for all that they did for their sweet boy! I have been trying to find good headbands for a long time, just joined a gym last week and today the old headband I tried to use slipped off before I even walked inside..just ordered 4 Brady's Bands!!

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  15. That just breaks my heart. Literally sobbing while reading. I never really know what to say about something like this because how can you console someone who lost their child. All I can say is keep being amazing! Brayden is proud of his mama! :)

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  16. Thank you so much for sharing this. Much love to Amy an I am in awe of her continued fight to find a cure for childhood cancer. Will definitely donate to this cause :)

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  17. This is absolutely heartbreaking. No parent should ever have to face what they have, much less an innocent child. Keeping this sweet family in my prayers!

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  18. I just balled my eyes out as I read her story. Not only did it physically make me ill as a mother to think about her situation, it made me relive the last 6 months of my brother's life two years ago. I have a friend who's son has brain cancer too and although I don't know the exact type, I know it's serious. Cancer is horrible and needs all the support possible.

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  19. Thank you for sharing your son's story. He seems to have been a special little guy. So sorry for your heartache. I know you miss him every minute of every day. Hugs from another mother...

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  20. I'm sitting here crying reading her story. I cannot imagine watching my child die from cancer. It was hard enough watching it happen to my step-dad at 35. Thank you for sharing her story and helping to get the word out!

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  21. I just had a friend lose a son to this on Mother's day. Reading this has left me in tears. I can't imagine the loss of a child and after reading this, i'll hug my girls a little more closely today - and i'm making a donation.
    thank you for sharing this.....

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