Conditions

Family Makes Own Path After Childhood Cancer

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Katie and Mike with their son Will

Katie and Mike with their son, Will, a childhood cancer survivor

After your child has had cancer, thinking about the bigger picture is hard. It puts you in a different state of mind. I have to keep myself from going down scary paths.

But then I look at my son, Will, doing typical, 3-year-old things. He is just a happy, smiling guy, excited to explore the world. He wants to go to the library, the park … he loves new things.

I know Will is going to make his own path—we will make our own path.

Diagnosis: Neuroblastoma

It has taken time for me to feel this way, which is probably not unexpected when your child has survived stage IV cancer diagnosed at 4 1/2 months.

The cancer came out of nowhere. We had taken Will to the doctor for a low-grade fever. His breathing was labored, so a chest x-ray was ordered. We expected a diagnosis of pneumonia. Instead, it was neuroblastoma, a deadly form of childhood cancer.

Will had a tumor in his chest the size of an adult’s fist. It was compressing his right lung, making it difficult for him to breathe. There were also calcifications on his spine, pressing on his spinal cord.

My husband, Mike, and I were told that our baby may never be able to walk.

Infants Can’t Tell You They’re Hurting

Katie with her son Will

Katie with her son Will

But the immediate focus was on keeping Will alive. He went into respiratory failure a couple of times, and ended up with a tracheostomy. Chemotherapy started immediately.

I can only hope that medicines kept his pain under control, as infants can’t tell you they’re hurting.

Will’s first hospitalization lasted 91 days, and I slept beside him nearly every night. While I was with Will, my husband tried to keep a normal routine at home for our daughter, Charlotte.

‘Get Going on CaringBridge’

It was in the first couple days—maybe even the same day of Will’s diagnosis—that a colleague reached out. He said, “I strongly recommend you get going on CaringBridge. It helped me, and I think it will help you.”

My friend’s young son had been diagnosed in 2013 with a cancer called rhabdomyosarcoma. Thankfully, he is doing great today.

I set up a website for Will, posted journal entries, and looked to see all the people who were visiting. I did it all from my phone, as I was often at the hospital 24 hours a day and did not have a computer with me.

Everyone Wanted to Know the Latest

At first, I viewed CaringBridge as a way to relieve some stress. The text messages and phone calls were overwhelming. Everyone wanted to know the latest. I found that details of status updates were being lost in translation.

So at night, I would take a deep breath and pour everything into a journal entry. But if Will was having surgery, or it was more of an urgent thing, I would do more posting.

I could see on the website the number of people who were visiting. I knew they were waiting for updates.

‘No Evidence of Disease’

By the time Will’s active treatment ended, he had spent more than 120 days in the hospital—nearly half of his young life. We were finally together as a family again. There is a 3 1/2 year difference between Will and his sister. It is hard to know what she remembers of Will’s illness. I am glad she does not remember Mom being away so much.

Will remains cancer-free. Or as they say in medical-speak, “No Evidence of Disease.”

The golden question is whether he will walk one day.

We are fully focused on physical therapy now. Sometimes, I see movement in his lower body, and I wonder, “Is that him doing it? Or is it just a reflex?” It is hard to tell.

The Story of Will’s Life

We continue to use CaringBridge, and post when we hit big milestones or when Will has scans.  Recently, when we got his toddler-size wheelchair, I posted a picture so everyone could see his huge smile. He finally has his independence.

I look at CaringBridge as the story of Will’s life. One day, I will be able to show him the Journal I wrote on his behalf, and the thousands of comments from family and friends. I want my son to know how much he is loved.

Here When You Need It

Are you or a loved one caring for someone on a health journey? If so, start a CaringBridge website, where you can share updates and receive encouragement and support from your community.

Katie is a CaringBridge Mom. She said that just as a friend directed her toward CaringBridge after her son’s cancer diagnosis, she “pays it forward” by encouraging families to make CaringBridge a first place to turn.

Comments

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Sharon Mar 14, 2017 10:30pm
Love this article. Great inspiration of love, hope, devotion and an outreach of encouragement for others who are or may be on the same path. To let them know that are not alone.
Shoua Harvey Mar 15, 2017 12:39pm
It was my pleasure to be a part of your story. He definitely has come a long way!!! Go WILL!
Robyn Edwards Mar 23, 2017 9:14am
Hi everyone you probably all know that on February know that on February 24th our. Nikki.passed away. She had a grand maul during night. We will miss her every day.
Diane Simpson Mar 23, 2017 4:21pm
This is beautiful and SO important.
Rickey Williams Mar 23, 2017 4:23pm
So good to hear and see the little fella doing well.
Nancy Clement Mar 23, 2017 4:29pm
What a lovely, inspiring article. Our hopes and prayers are with the family and, of course, with the amazing Will.
Sherry Park Mar 23, 2017 4:30pm
Thank you for sharing your story
Nell hatcher Mar 23, 2017 4:41pm
We never know what others are going through, only God is there always. Great story, wonderful family.
Meg Chandler Mar 23, 2017 4:49pm
I am praying for your little boy, Katie. He is so beautiful! I will make a pledge in his honor. Thank you for telling us his story. Meg Chandler
Meg Chandler Mar 23, 2017 4:51pm
I am praying for your little boy, Katie. He is so beautiful! I will make a pledge in his honor. Meg Chandler
Nelson R. Bennett Mar 23, 2017 5:01pm
I am touched by your remarkable story. And, thanks for sharing your challenges and victories for us to read. I too have recently gone through the dread of cancer. I retired at 73 on June 1, 2016 after 24 years with a company. Then, August 1 was diagnosed with throat cancer. Not a smoker; just an odd strike. I've gone through radiation and chemo; recently completed both a Pet Scan and Cat Scan; seems I'm in good shape except after five months still can't eat. But my story pales in comparison to what you and your son have gone through. I wanted to wish you well and salute your life.
Bac & Mindy Vu Mar 23, 2017 5:04pm
I'm praising Jesus that your precious Will and your family are making your own paths!! Your family's story is inspiring. Thank you for sharing. I'm so thankful for CaringBridge. It has been an incredible way for me to keep up with, and know how to pray for, friends and family who are going through similar circumstances. I will be praying for Will!! He looks determined!!
myrtry a etlinger Mar 23, 2017 5:15pm
I am having difficulty accessing my daughters inputs/history comments ( Shannon ZUCCA ). FOR NO APPARENT REASON I NO LONGER GET HER INPUT AND HISTORY UPDATES. I AM INTERESTED IN LEARNING ABOUT MY DAUGHTER AND HER PROGRESS. PLEASE HELP AND INFORM ME WHAT IS REQUIRED FOR ME TO ENTER HER WEB SIGHT. THANK YOU. MYRTRY ANN ETLINGER
amiee Coffey Mar 23, 2017 5:21pm
Dear Will and family: Will, God lead you to this and he will see you through it. I'm betting next photo we see of you is one where you will be walking. In the meantime, I will be praying for you and all your family. Keep smiling! Amiee Coffey
Linda Collier Mar 23, 2017 5:27pm
So happy there is no evidence of disease in your precious Will. Prayers for continued good health and that he will walk soon. May God heal him and keep him healthy. May He richly bless all your sweet family and thank you for being an encouragement to others.
Bob Mar 23, 2017 5:27pm
Thanks so much for sharing your and Will's story!! God bless you as you all move on in your life toether.
JD McCain Mar 23, 2017 5:30pm
I love that success story. God is good all the time. Keep up hope. Live by faith
Penny Mar 23, 2017 5:33pm
What a beautiful picture. Thank God for Caring Bridge giving all of us a channel for information, support and a much needed way to show support. Praying for you and all the little angels with cancer.
Susie Hastings Mar 23, 2017 5:41pm
Such a heartwarming story? I have friends who were/are on Caring Bridge and it has made a huge difference! Sending love to you all! Susie
Martha Schaffrath -- 1719 W. Rascher - Chicago, IL 60640 Mar 23, 2017 5:45pm
Keep up the good work of raising your beautiful daughter and your strong song. You are special parents. Your story was wonderful. I am so glad he is still enjoying his life. Thank you
Martha Schaffrath -- 1719 W. Rascher - Chicago, IL 60640 Mar 23, 2017 5:46pm
Great story. You are great parents.
Phyllis Hord Mar 23, 2017 6:02pm
It has been so interesting to hear or read the story behind Will's cancer. You, as his mom, has been such a blessing to him as has his dad while trying to keep things as normal as possible for Charlotte. I will be praying for Will and all of you as his journey continues to improve. I am a almost 20 year cancer survivor having had breast cancer, long hard chemo and 33 radiation treatments. This was almost 10 years ago so I know how hard this time is. God bless and love to your family from me.
Eugene R. DeHoogh Mar 23, 2017 6:04pm
Thank you for sharing your journey of caring and communicating with family and friends as you build bridges of care-compassion that bring healing to body and soul. I thought of two references in Paul's epistles---Gal. 6:2 "Bear one another's burdens, and so fulfill the law of Christ." And Eph. 3:20 "Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us." (NKJ) Also the last words of every verse in Psalm 136. Blessings, Gene
Phyllis Hord Mar 23, 2017 6:07pm
This is a wonderful story about Will's life and cancer. You have been a wonderful mom taking care of him as has his dad keeping life as normal as possible for Charlotte. I will be praying for all of you as he improves. I know God is listening to all the prayers being said fo all of you. I had cancer almost 10 years ago, 6 hard months of chemo followed by 33 radiation treatment. It 2 was hard and at that time my husband was fighting lung cancer and skull cancer and died after we were married 55 + years. God bless Will and be with all of you as he shows improvement and learns to enjoy his wheelchair. I live in one and what a blessing to have one.
Russell Sletmpoen Mar 23, 2017 6:10pm
Hi Katie: God bless you Katie and of course little Will. I first learned of Caring Bridge when a friend of mine was hospitalized with cancer. His wife gave us all a copy-report of his condition and it was a great way for all of us to be on the same page with minimum of extra strain for her. She said it helped her stay focused. It is a great organization and I'm happy to donate to their expenses. Russ
Margaret Basgall Mar 23, 2017 6:28pm
I love caring bridge, my cousin was so sick and it nice to have updates and to let the family know we where thinking of him. Just like with Our Logan P, it was great to give our love to him.
Lynne Thomas Mar 23, 2017 6:38pm
Hi Katie, My name is Lynne Thomas I am happy for your family with your out come for Cancer. While reading your article you mentioned a friend who's child had Rhabdomyosarcoma. My son 2014 at the age of 14 passed away from Rhabdo. I would love to be able to get in touch with the family who's son survived. Sam may have not survived but would love to connect with someone who's child did survive to see where they are located and where they receive treatment. Appreciate any help you can give to me. Thanks a Loving Mom.
Maryann little Mar 23, 2017 7:23pm
Thank you for Sharing such a caring story
Runelle Hall Mar 23, 2017 7:32pm
We give praise to the Doctors and our Lord for Will's progress. May he continue to stay healthy and keep that precious smile 😇
Rosemary Fields Mar 23, 2017 7:49pm
Wow, what an exciting story. I give God all the glory for being with you all and giving Will a miracle of survival. I will continue to pray that this precious boy will walk! I, too, am a cancer surviver and I give God all the praise and glory for He alone hath given me life. Continue to share your story with everyone because we love to read of stories telling of God's miracles and love. He is faithful!
Donalene burris Mar 23, 2017 7:52pm
Thankful to the Lord and all he does. This article will keep us praying for all sickness and the Hope we have in our lives, God is good all the time, much love n prayers for all.
Sandie Rechtsteiner Mar 23, 2017 7:53pm
I will pray for your son Will as I also pray for Caroline. I am amazed by the families that post their Journeys on caring Bridge and I see Gods gift to so many of the children with this terrible disease. I lost my mother to it as a young child but I have grandchildren and great grandchildren now so I am truly blessed. Just like Will is with his own loving family. God Bless
Eres Ga Mar 23, 2017 8:08pm
I have read the story about your son, keep patient and pray constantly to God. Hope is always in the protection of God. Amien.
Delores Nelson Mar 23, 2017 8:32pm
It is a heartfelt story. We will pray that he will learn to walk and be a healthy boy. God bless your family.
Valarie Bogner Mar 23, 2017 8:38pm
Katie, Thank you so much for your story. Will and your family are in my prayers. God hears everyone of them. My granson, Aiden, is 5 years old and was diagnosed with DIPG in August. They gave him a year to live with radiation. He was treated at St. Jude' s in TN. I pray everyday that God grants him and us a miracle! Each day with him is such a blessing, as I'm sure you understand. I hold onto God's promises which helps my perspective. I pray for your Will, that God completely heals him and takes away all cancer and that he begins to walk, run and play! God bless all those whose children and grandchildren are suffering. In our Lord Jesus's name....Amen
Rebecca Matthews Mar 23, 2017 8:39pm
Praying for this family ! God Is so Good !!!!
Jo Langley Mar 23, 2017 8:41pm
Thank you for sharing your beautiful story. May God bless your family and sending prayers that Will will some day walk!!
Ellen Mieser Mar 23, 2017 9:46pm
In April 2010 my son, Chet, was diagnosed with colon cancer. He was not young like your son but had 2 boys and 1 girl which he was raising after his wife left him and the kids before he was diagnosed. They moved in with us and every other week I drove him to Tulsa, OK to Cancer Treatment Center of America where he would spend 3-5 days getting treatments and then return to Independence, MO. I definitely know what you are going through and my heart goes out to you. By going to Tulsa for treatments, I didn't hear about CaringBridge till he went to Hospice here in Kansas City. It was not only good to be able to give our family and friends an update about Chet, but also to receive encouragement from our church family and others. I am a Christian and I don't know what I would have done without my Lord and Savior to help me through all of this. I am so happy that Will is doing so well. I will pray for him, you, Mike and Charlotte. And I pray that if you don't know the Lord as your Savior, that you and your family may come to know Him through all of this. May God continue to bless you. Chet went to be with the Lord on July 28, 2012.
Nita Borg Hemke Mar 23, 2017 10:03pm
Thank you for your story. I have had two friends use Caring Bridge when they had cancer. The web site was helpful for them, for us and NOW we see where another family has received help from being a part of Caring Bridge. All my best as the life in your family continues.
Nancy Fortenbery Mar 23, 2017 10:29pm
Wonderful, caring, love filled article. I feel like I know Will & I will pray that 1 day he can give up that wheelchair & WALK on his own. I have been involved with Caring Bridge with my brother & sister that died & several friends. A wonderful outlet. Thanks for sharing with others.
Lisa DiMuzio Mar 24, 2017 6:48am
God Bless Will and your family, he is a beautiful boy!!! I will add Will to my daily prayers.
Narri Bacchus Mar 24, 2017 8:06am
Katie and Mike - this is remarkable and I hope that Will continues on the path of wellness. Charlotte knows you are her mum and that's all that matters. Very inspirational and keep the candle burning. Cheers to health and happiness. Love Lyla Bacchus
Ron Schwartz Mar 24, 2017 8:15am
Beautiful family.
Dale and John Mar 24, 2017 2:14pm
God Bless you all......
Mary Sue Madrigal Mar 24, 2017 5:55pm
Dear God! It is such a blessing to hear your story of Will.! He is so beautiful! Only through Our Lord and Our Lady could such healing take place. He is hear to be an example. Of a true miracle and Gods hands are down upon him! We will pray for you and Will . My husband survived a cancerous tumor in the same area as Wills.
Your friend, Kay Mar 25, 2017 8:27am
So glad Will is doing good. He will be in my prayers. So glad Will is doing good. He is in my prayers.
suraj subedi Mar 26, 2017 9:47pm
Thanks caring bridge for showing us this beautiful article. God bless him and his family with prosperity and healthy life ahead.