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A letter to other families battling childhood cancer

June 06, 2014

Written by Colleen and JP Wright, parents of Ethan Wright, Ewing's Sarcoma Fighter and to date, SURVIVOR

A year ago, our son was diagnosed with cancer. While it still doesn’t seem real and we often have to remind ourselves of the difficult journey we have been on this past year, we made it through. But we didn’t make it through without overcoming some challenges and putting up a fight along the way.

On May 24th, 2013, our son, Ethan, was diagnosed with Ewing’s Sarcoma, a rare bone cancer affecting only 1% of children diagnosed with cancer. On the days leading up to his diagnosis, there were many emotions and thoughts running through our minds, as we just wanted to find an answer to our son’s excruciating pain. Within a matter of moments, our world was turned upside down and life as we knew it would be forever changed.

These were the thoughts running through our minds:

"Something was not right with our son, Ethan, and we needed to find out what was causing his pain. Life quickly became a flurry of emergency rooms, tests, nurses, doctors, needles, big words, and scary words. Then there were more tests, a hospital transfer, ambulance rides, and our other kids were still at home. What's happening? What's everyone not telling us? We just want to find help for our son."

"Still searching for the answers we needed, we were faced with a new hospital, new faces, more big words, and even scarier words. Then more tests, scans, X-rays, and a transfer to another hospital floor. Pain. Our son is in pain! Please help us! Biopsy day has come. Please let it be negative, please!  Everyone pray hard. And then we got the answer we had been so afraid of – cancer."

"Must stay strong - for our child and for our family."

It was at this moment that we were faced with one of the most difficult tasks we had ever dealt with as parents – letting our son know he had cancer. Then, we had to do it all over again when letting our two daughters know their brother had cancer. Both of these instances were emotionally and mentally challenging. Suddenly, we became experts on our son’s diagnosis in our children’s eyes. They asked a lot of questions, and we didn’t have all of the answers to. We realized that our daughters and son were looking to us to help them understand a very scary and unknown world that we were all about to enter.

If this sounds all too familiar to you, here are some things that helped us cope with this new reality and push forward when times were tough. Looking back over the year, we dealt with it the best way we knew how and just wanted to see our son get better.

Pray, a lot!  Pray for your child to be okay. Pray for your family and marriage to stay intact. Pray for the other children and families battling childhood cancer. Pray that fewer families will have to go through this in the future.

Look for support from family and friends. When Ethan was first diagnosed, the oncology team at Arnold Palmer Hospital for Children gave us a roadmap, a plan that outlined what Ethan's medical journey would look like for the next 9 to 12 months. Life changed forever in an instant! We found that knowledge is power and inner strength comes from within and those around you. Our family and friends joined us in our fight, and helped us to be the best we could be while battling this awful disease. They were always by our side and lifting us up when we needed it. They allowed us to be strong for Ethan and stay by his side to be there when he needed us the most.

Embrace this new normal! The doctors, nurses, other patients and their families become a part of you and your future. They become your second family. Embrace those around you for comfort and distraction when needed.

Only research what you know is true in your case. Limit your research to only educating yourself about the facts about your child’s diagnosis, as the treatment protocol for each child varies depending on the child’s age, gender, location of the disease, and if there are trials involved. Your mind will go to dark places, so trust yourself to ask questions and get answers from your child’s physician. There are no wrong questions that can be asked, and if the answers don’t seem right, ask more questions. Educate yourself on the meaning of medical terms, procedures, phrases, names of medicines, etc. to help you better understand what the nurses and doctors are communicating to you about your child’s condition and treatments.

Ask for help and don't forget to take care of yourself. Your child will depend on you now more than ever, so you need to be healthy yourself. A healthy you is one step closer to a healthy child! Take a lot of pictures of those you love and all the happy moments, because they will become part of your story. Make sure you continue to make plans in the future, even if it is only in a couple days, a week or a month. Just like in life, plans change, but it is important for you and your child to look to the future so you are reminded that there is more to your family’s life than just cancer and hospitals. It won't be easy and your family’s schedule will suddenly be written in pencil (even simple things like going to the grocery store sometimes need to be erased).

Get plugged in. There are many organizations, foundations and groups specific to helping families with children battling cancer. They are there to help you with the means to make your child smile, and even to help with expenses - both medical and personal. On the good days, make new memories and embrace each moment. You will find that suddenly, a simple walk outside around a lake on a nice day can be like going to Walt Disney World for the first time.

There will certainly be ups and downs, frustrations and triumphs. As a parent, you have the opportunity to become humble and make sacrifices for your child in ways you didn't know you could. But you will become a better person for it! Your emotions will become a roller coaster ride, but know there is support all around you if you seek it out. People you have never met before will become the people you rely on, as they too are going through a similar situation.

Your heart will break, as not all children will survive. Know that no one’s battle should be without a purpose, as each family has a message to share. Let this truth motivate you to help not only your own family, but others as well. We are all in this together! The more we learn, talk and share about children's cancer, the more research and facts can be gathered and shared among the children's cancer medical community. No one wants children to suffer and go through the rigorous battle against cancer.

Everyone's journey is different, but together we are strong. Many of the families affected by childhood cancer at the hospital and in our community rally to raise crucial funds for children's cancer research so that better treatments and even cures can exist in the future.  This must happen - it will happen so that other children will not have to go through what our children have today and in the past.

Never stop telling your story because you never know whom you may help.  And always remember to keep moving forward for yourself, your family and your child!

To learn more about Ethan's journey, visit the Yellow for Ethan Facebook page, here.

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