This site was founded to support our friend Shawn Kuykendall during his battle with Thymic carcinoma. His legacy lives on at the Kuykendall Foundation, where our mission is to support families affected by pediatric cancer.
Shawn touched the lives of many, and whether you know him as a Major League Soccer player, as a coach at American University, or your first Kuykenstrong experience came through the YouTube sensation “Step Into Christmas“, we’re glad you’re here.
Shawn fought his battle with the help of the beautiful game, and his foundation does the same. Coupling a passion for soccer with the courageous spirit of those battling pediatric cancer, the Kuykenstrong Foundation strived to provide support, friendship, and resources.
Kuykenstrong sought to share Shawn’s love of the beautiful game and spirit with others fighting cancer.
Thank you for visiting and stay Kuykenstrong.
July 22, 2013
A lot has happened in the last couple of months. I know a lot of people have been asking and information has come out sporadically here and there. First and foremost, I appreciate so much the support from everyone. It has been difficult for sure, but I am trusting God’s sovereign plan and purpose.
Earlier this spring, in mid April, I started to feel fatigued throughout the day, a building headache, and periodic low grade fevers. I went to the Dr. and some blood work came back positive for Lyme disease. I took antibiotics for 3 weeks but didn’t feel better after the cycle (in fact I felt worse). I then took another 10 day cycle to see if it helped and it did not. On June 19, I starting to get sharp pains in my lower back, stomach, and chest. I went to the ER where they preformed some tests and found a 6 by 7 cm mass in my chest.
They preformed a biopsy and confirmed that it indeed is cancer. The initial diagnosis is Thymic cancer, for which there is no cure. It had spread all over my body and onto my bones (chest, ribs, and spine). On July 1, I was readmitted into the hospital so that I could have my mediport (port in which the chemo is administered) and chemo given on July 2nd. It was a super strong dose. Chemo does two things, it attacks the cancerous cells as well as attacks your body’s good cells. So the first few days are rough and was full of vomiting, soreness, headaches, indigestion, and constipation. It is not fun for sure. But after 7 days the body turns a corner and I have responded well. I haven’t been taking pain me, and have been virtually pain free for the most of these 9 days. This is very positive that my body is reacting well.
Because of the aggressiveness of the cancer, there was a fear that the cancer had spread into my bones but thankfully the bone marrow scan was clear. This is encouraging news for sure. As of now the initial diagnosis is that it is Thymic. There is a small ray of hope that it is not Thymic as an expert I am seeing at Georgetown has seen some irregularities that are not consistent with Thymic (on the PET Scan) and has some questions.
I am officially working with Doctors at the Lombardi Center at Georgetown Hospital. I am blessed to be there as they are very good at what they do. They will help put together a great treatment plan.
My next chemo is scheduled for July 25th. I wish it was sooner as I can’t wait to get back in there and beat this!
However, my biggest ray of hope is that God has a purpose for me. And that has always been to bring glory to Christ. I believe in his ability to miraculously heal my body, but beating cancer has very little to do with beating it in an earthly sense. Cancer won’t beat me because it can’t take away my hope and joy in the the salvation that Christ provides me. Is it scary?… oh yes… Is it hard?… the hardest thing I’ve ever faced… But is my sovereign God not in control? He most certainly is in control. I will hold onto that each day and fight my best to heal my body and fight each day to trust God.
The most important thing I can ask for from anyone is PRAYER. The bible asks us to bring things to him. So let’s glorify Him and bring this to his table.
Thanks for asking about me and being there for me. It means more than I am able to describe. I love you all and will hope to connect with you all soon.
July 25, 2013
Shawn was slicing and dicing today during round two of chemotherapy. Kicking some cancer butt, one Blue Steel face at a time.
August 5, 2013
I had my second round of chemotherapy on July 25th. For those who aren’t as familiar with this process, chemotherapy is strong medicine that attacks cancerous cells. And not only does it attack the cancer, it also attacks the body’s good cells. In short, it kicks your butt. The first few days are filled with nausea, pounding headaches, and overall lethargy. Energy is low and discomfort is high. After 7 days, the body starts to rebound (hopefully) and build back some of those good cells in the body. This round I certainly felt the effects of nausea (although I held it all in this time!) and pounding headaches, but I’m happy to say that I’m feeling quite well these days. God’s been providing enough grace for each day. My ability to sleep through the night has greatly improved as well which is a real blessing.
Currently, my Doctor at Georgetown University Hospital, has called for 6 cycles of chemo (a cycle is every three weeks). Along the way we will monitor the progress of the treatments.
The support that everyone has shown is amazing. It is truly humbling and gives me a boost each day to know so many people are praying. God has a plan and in many ways I already see it moving. He’s writing an incredible story and I’m finding peace along the way.
Remember… Job 36:26 – “How Great is God – beyond our understanding…” We don’t have to know what’s happening to know what’s happening. 🙂
Grace to you,
August 16, 2013
Another long day at Georgetown University Hospital, but on the whole an encouraging day for sure. The day starts with an 8:30 am appointment with my doctor to monitor my progress and to draw some blood to check if my levels are healthy enough for chemotherapy. At around 10:00 amwe head over to the Infusion Center to check in to get the medicine. Allison, the nurse, hooks me up to a hydration bag for the first couple of hours and then progress through premeds, including anti-nausea meds. This is followed by three types of Chemo and finishes with another hydration bag. The total time to take in all the meds can be 6-8 hours.
What was encouraging is that Doctor Gioconne has found that the mass in my chest has shrunk and that the first couple of treatments are progressing. In addition my lymph nodes looked much better, and my blood counts are solidly in the normal ranges. By no means is this a victory in total, but it is a victory today.
The bigger victory has come from the amazing people that have been continuing to show massive support. I’m so humbled by people who send notes, emails, Facebook messages, texts, and or visit in person. I’m not always in the best state to show my gratitude at those moments but they do mean so much.
I want to thank my family for hanging out with me yesterday. Just the banter and conversation makes the day feel normal even as un-normal as it is. I love them so much and they provide so much joy. There were also some great friends who stopped by… The mere thought of wanting to stop by to say “hello” means so much.
raise God for blessing each day. There is no doubt that God asks us to lay our burdens before Him. I want to thank Him for this encouraging day. I want to thank you all for reaching out to God on my behalf.
Post Script – Allison my nurse has been extremely helpful. She has been serving with a gracious heart.
September 3, 2013
I want to thank everyone who came out to the Juggle-A-thon. It truly was one of the most humbling nights of my life. What a blessing to see so many familiar faces as well as new ones coming to support (someone they don’t know). I feel like there aren’t words to describe my gratitude. This certainly is a trying time in my life, but everyone’s support makes the burden lighter. The relationships… the people… It is just amazing to see. I am truly blessed. 🙂
Rest assured I will keep fighting while trusting for God’s healing. What a huge boost and encouragement last night was! Keep working through this journey of life. Live with grace towards others and always be thankful.
September 26, 2013
Chemo… Round 5. I’ve been in good spirits throughout the process (from all the support and God’s grace). Each of the last rounds I wasn’t overjoyed but had an athletes mentality like… “Let’s Go… Have to do it… No excuses.” And while I have certainly been gaining strength and feeling better after each round, I must admit I’m pretty drained through the process. This is the first time I’m really dreading going in for treatment and the subsequent awful days to follow. Oh please pray for me today to have strength and courage to push through. Please pray for my nausea, stomach, and headaches. It’s not easy to fight and I certainly can put on a brave front. Today, I want to say how difficult it is and I need God more than ever.
Grace to you all.
October 1, 2013I want to take a moment to praise God for his blessing on me in this process. We got some positive news last week from the scan. The mass in my chest is continuing to shrink. This is great because it means that I’m responding to the chemotherapy. We will have 1 more round of chemo to finish up. We will then complete comprehensive scans to again check the progress and spread. If things go as planned we will begin to talk to the surgeon about removing the mass from my chest. That would a huge step in ridding my body of cancer. There still is a long road to go but it is encouraging to be making these positive steps. God is great and has been providing grace for each day. People’s support has been amazing. Everyone’s prayers are felt… and sometimes people have been reaching out at just the appropriate moment (even when they don’t know it).
Thanks for the prayers… and know that God has a plan for all of us…. His burden is light. 🙂
October 28, 2013
Got some really encouraging news this round. The mass has shrunk by over 50%. It was originally 7.9 cm at its widest point when we first discovered it. As of September 24 the mass had shrunk to 4.3 cm. It is now even smaller. Praise God that the chemo has been working to kill the cancer. The plan now is to get CT and PET scans in 4 weeks. The scans will give us a picture of what the spread looks like (which is key in this). Definitely need prayer that the spread is not growing but in fact shrinking and or dying off from the chemo. Depending upon what the scans show we will start talking to the surgeon and potentially go in to take it out in the first or second week of December.
I can’t tell you all how important your prayers have been. There is no doubt that I have felt God’s presence through this. His healing for sure has been upon me. so… Thank You!
We are not out of the woods yet but we are progressing. So we will take today’s blessings one day at a time and be grateful.
November 22, 2013
Please take the time to check out The Washington Post’s profile of Shawn.
Our favorite excerpt:
Kuykendall told bad jokes — “What did the fish say when he ran into the wall? Dam.” — and the whole room erupted in laughter.
Yep, WaPo nailed it.
Love you, buddy.
March 12, 2014
At 1:06 a.m. today, Shawn ended his fight and went to be with Jesus.
Thank you for your continued support and prayers for the entire Kuykendall family.