From the World of Children's Cancer...
In reality children's cancer is much more than smiling faces and bald heads.
In reality children's cancer is much more than smiling faces and bald heads.
I've written many stories about our daughter, Kaidan and her cancer story. I've chronicled her diagnosis, the treatment, the aftermath. I've discussed the financial strain, the chronic health conditions, and the medical errors we've dealt with. I don't really know what to write about today. I could write endlessly about our lives, before cancer and after cancer. There is no shortage of sadness and pain. There is also no shortage of life lessons and happiness.
The truth is, cancer brings out the very worst experiences you'll ever have, and it highlights the very best things in life. As a 'cancer family', you get to witness humanity. You become hypersensitive to the important things in life. You gain new friends who will build you up when you cannot do it alone. It's an amazing, horrible, ugly, beautiful thing - all at the same time.
In June 2007, Kaidan was diagnosed with a high risk form of leukemia (T-cell Acute Lymphoblastic Leukemia), at the age of 5. She completed her treatment in November 2009 and is currently cancer free. Depending on where you get your statistics, you could probably consider her 'cured', although I won't look at it that way until November 9, 2019 - 10 years after her last chemotherapy.
As a result of the ridiculously harsh treatments available for childhood cancer, Kaidan is now plagued with chronic health conditions. She has severe GI issues, and has been hospitalized multiple times with internal bleeding. Her bones are weak and she has had surgeries to try and rebuild and strengthen them. She never feels good, she's always tired, and she is always in pain. Imagine that life - as an adult it would be horrific, but as a 15 year old, it's unfathomable. She should be living life, enjoying every moment. And she does - to some degree. But it's mostly for show. Sometimes, she just can't do it. She just can't keep up with the life that she's supposed to lead. It's exhausting - pretending that you feel good, pretending you aren't in pain.
We don't know what the future holds for Kaidan. I suppose we don't know what it holds for any of us, but hers seems especially uncertain. So we choose to recognize the good things and hope for greater things. You will never see Kaidan without a smile on her face - ever. She is an example of perfection, as are all of these kids - the fighters, the survivors, and the angels.
When you hear the words "Your child has cancer", so many things run through your mind. There is fear, incredible fear. There is disbelief and denial... surely there MUST be a mistake. There are tears, and hugs, and more tears. You feel as if you are in a dark tunnel and there is no escape. Everything seems to be moving in slow motion, and then things start moving in warp speed. So many decisions must be made, so many tests done. Time passes and you are hardly aware of it. Everything that has mattered in life up to that point takes a back seat to the fight you have been forced into.
You struggle to be brave and strong for your child, when you really want to crawl in someones lap and cry. You are bombarded with so much information that makes no sense, and you must make decisions based on that information. You hear words, diagnosis, drugs, procedures and many more things that you had no idea even existed. You meet doctors and nurses that will work so hard to save your child's life.
You are checked into a world that you will never fully escape. It is the world of CHILDHOOD CANCER. It is your own version of Hotel California.... you will always be a part of that world, no matter the outcome of the cancer fight. You will meet so many others that are in that same fight. So many that won their fight by gaining their angel wings. So many that gain remission. You have no idea at first, or for many months, just how your own fight will go.
You will meet strangers that become family, that carry you through their love and prayers and support during times that you just feel like you can not go on. You will lose friends and family because of your fight. So many people that just do not know how to help or what to say, so they chose to distance themselves from you. You will find so many organizations that work tirelessly to help you, to make your load a little lighter.
And you will meet so many warriors. Other children that are fighting for their lives, too. You will learn so much from these brave heroes. You will learn how to smile through anything. You will learn how to keep on going on, even though you do not have enough energy to lift your head. You will learn how to love, how to find joy in any circumstance. And you will love these children with all of your heart. Their fight is your fight. You will never be able to turn your back or pretend that Childhood Cancer does not exist. No matter the outcome of your own fight... you will continue to fight for every child and family that may hear those dreaded words.
One day, I pray.... no mother, father, family will hear the words "Your child has cancer." Until that day, we go on fighting. Raising awareness. Screaming about the cause. There is not enough funding for research. There are not enough people doing whatever they can to help those fighting. I ask you.....
What will you do today to help? There are so many ways to help... write a letter or call your congressmen, tell them that 4% is not enough funding for research. Get on the bone marrow transplant donor list... go to BeTheMatch.org and request a kit. Donate blood. Find a legitimate childhood cancer foundation and make a donation... some good ones are CureSearch, Alex Lemonade Stand, and ACCO. Whatever you do....
A few years back a friend of ours asked if one of his buddies could do an interview for a school project. Thought we would share it.
:Liam was diagnosed in October 2013, he was only 13 months old, with Rhabdomyosarcoma. He went through a year of intense chemo, months of radiation, and multiple surgeries. Finally began remission in September 2014. Unfortunately, that only lasted a short 2 1/2 months. In that short period of time his tumor grew to the size of a golf ball. He went through an even more intense chemo treatment and Liam had his bladder, prostate, and tumor removed on April 7th 2015. He finished chemo September 14th 2015. Liam went in for his one-year scans and once again the tumor is back. This will be his third battle, at the age of 4, with this awful cancer. He just had the tumor removed again, in October he begins 3 months of chemo, some radiation, followed by a bone marrow transplant. His family is going to also try some different medical approaches this time around. They will be intergrading
alternative and natural medicines along with conventional therapies. The clinic that offers the more holistic approach does not take any medical insurance. Changing lifestyle habits for Liam is completely necessary at this time. His body needs to stay strong and as healthy as it can be kept.. It is already so damaged from.the past years of treatments. The hope is that his quality of life can support his quantity of life.
Late January 2015, Alexandria (Ali) became ill with croup. After 2 weeks she returned to her old self; happy, loving and friendly to everyone! About a week later, she started to show symptoms of croup again but this time she would sleep all throughout the day. She complained of leg pain and was very pale with dark circles under her eyes. Her parents assumed it was the flu and brushed off the leg pain as body aches that come with it. When Ali's grandma found out about her being sick, she had a strong feeling that Ali should be seen by a doctor and have blood work done. An appointment was shceduled for the following week. The next day, Ali complained of severe leg pain and refused to walk. The pain was so bad that they called the doctor again and explained the symptoms. They were told to take Ali to the ER to have her examined. ER doctors thought she may have a hip infection. They took xrays and did her blood work. When the blood work came back, Ali's parents were told she might have leukemia. Their hearts sunk as they looked at their sleeping girl. Within the hour, Ali was taken to Primary Children's Hospital where they did more blood work which confirmed her diagnosis of 'very high risk' b-cell Acute Lymphoblastic Leukemia (ALL). Since her diagnosis on February 17, 2015, she has had several rounds of chemotherapy, medications, lumbar punctures, blood transfusions, allergic reactions and a few complications in between. Overall, Ali is doing great and her family is looking forward to the day when she completes her chemotherapy in July 2017.
This website is a work in progress. I'm winging it as I have never done this before. But hopefully as I am able to add content and tighten things up a bit it will be a resource for someone. Any insight or input on how to improve it is welcome and appreciated. The goal behind this website is to extend the reach of Team Griffin a little further. Any way we can increase awareness for children's cancer and help families in need is where we want to head. Whether that is in our own community or through Team Griffin members across the country and even the globe. Each one of us is a voice for these kids, and we can make a difference.
Hopefully this is a place that can help us all unite so.....
No Child Fights Alone.
Leave a comment below and tell us how we can improve the site or just say HI!!