Zein Youssef’s FOURTH Battle with Childhood Cancer
A Story No Parent Should Have to Tell…
Sharing the 6-year cancer journey of our son Zein is not something that can be done in a couple paragraphs. It is hard to explain childhood cancer to those who have not experienced it. It is a journey no one imagines they will have to take, never mind with their 6-year-old son who is just starting life. To date, Zein has endured over 55 sessions of chemotherapy, 600 chemo pills, 50 sessions of radiation, 3 clinical trials and 45 trips to the operating room! How does one wrap their head around this? Battling cancer, especially with Zein’s journey of ongoing wins and losses, is very hard to share. It is even harder because we have chosen to surround ourselves with positivity making it a lifestyle. Going deep to share the pain means we have to look past the positive and instead focus on the anguish and uncertainty we try so hard to push into the background. But here we go…
Childhood cancer boldly and without warning entered into our lives when our son Zein was diagnosed with a very aggressive form of stage 4 neuroblastoma a few months short of his 6th birthday. Life as we knew it was never the same again. With no other options and our backs to the wall, my husband Tamer and I accepted the test, rolled our sleeves up and united together as one. Through the turbulences, we continued to hope we would be an example to those around us what faith in action looks like. Our mindset was that cancer is not the end of the world and the only option was to fight it with the grace of God giving us faith and strength to feed our positive energy.
Zein endured one year and a half of grueling chemotherapy, radiation, and surgeries. By the power of prayer, God’s healing, along with a wonderful medical team… a miracle happened…our son, Zein, beat it and was declared in remission. A remission that was oh so sweet but too short! Two months into it, he started showing symptoms of an even more aggressive cancer…..brain cancer! This part of our story has some of the most painful moments, even more painful than the first diagnosis. The tumor in Zein’s brain was evil and monstrous and visibly showed signs on our 7 ½-year-old warrior. He wasn’t himself. His cognitive skills and overall behavior was clearly affected. He struggled to keep his infectious smile throughout the exhaustive treatments. During this time, Zein had 4 brain surgeries, two of which were life threatening after he went into comas and started seizing…We sat in a room with a team of doctors at CHLA and were told for a third time this was it! Our son wasn’t going to make it. He fought a hard battle and that we should be proud of him….but there are no treatment options…..nothing else doctors could offer! One more time and again by the grace of God, we rolled our sleeves up, looked to the sky and asked God to show the world His glory… Asked Him to prove to the world once again that miracles do happen. It was a slow-paced miracle…but it happened. And our son, who by that time had over 45 rounds of chemotherapy, 50 sessions of radiation, 25 surgeries, two major tumors and more, beat cancer again by the grace of God and the power of prayer.
This good news launched us into our 2015 recovery journey… recovery for Zein AND the entire family! We decided to focus on healing…all of us. It took a year to gather ourselves and start getting back to a life of some normalcy. Our son was showing signs of healing, including gaining weight and even started attending school again. We devoted our time and resources for the next two years to physical therapy, speech therapy and continuous daily chemo to maintain remission and help him recover from all the side effects of the cancer treatments.
My husband and I never gave up on being advocates for childhood cancer. We realized there was a need to raise awareness for journeys like ours. In 2015, my husband started an initiative, through his Real Estate business, called Home for a Cause. Through this, a percentage of every check earned is donated to childhood cancer research. I co-founded a nonprofit organization, Create a Smile, whose mission is to inspire kids battling cancer and cater to their needs during their cancer journey with personalized gifts and experiences. We also took it upon ourselves to be of service to other cancer parents and families both locally and internationally, where we could offer the benefit of our experiences and knowledge of resources as well as comfort and support.
This was also a time when we pushed our role as cancer parents aside and just became parents. Our family grew with the addition of our beautiful baby girl and we became a family of five. Life was good again. We were even able to take a summer vacation to our homeland Egypt in 2017 and visit our family whom we hadn’t seen since the original diagnosis five years before. Zein’s quarterly full-body scans taken after our holiday jolted us back to an ugly reality!
After 3 years of remission, the news we dreaded and prayed would never happen…did. Zein was now about to face his third battle with cancer, this time caused by all the chemotherapy and radiation. This cancer was a secondary malignancy even harder to cure than his last two battles! Sometimes ignorance is bliss. We were no longer ignorant of what was ahead. How would we go back to this life dominated by cancer AGAIN?! We, of course, had no choice so we rolled our sleeves and again marched into battle with this demon named cancer. Surgery was performed to remove the tumor along with part of Zein’s kidney. Three months later, we experienced our third miracle when scans revealed that our warrior Zein had gone into remission for the third time.
This short-lived happiness lasted a total of six months. The secondary cancer we thought had been removed through surgery metastasized in his lower abdomen. Renal cell carcinoma is an adult cancer that does not respond to chemo or radiation. It does not occur in children! We were sat down in that ugly little room yet again to hear the dreaded words … you have a year, maybe two! This is the verdict we are currently living with but believing God has the final word. So, we hold onto our faith and look back at all God has done and believe it is His will to heal Zein.
The journey has been so long and the ups and downs so debilitating we don’t know how to express our pain any more… We choose faith. We choose to fight and believe to the core that this too shall pass. We choose to leave everything in God’s hands and thank Him for His endless miracles bestowed on Zein. We choose to be greedy and keep asking Him for more miracles, because as parents we want to see our son grow! We want to throw four cancers behind us and move on. We smile every day because there are always reasons to smile. We continue to be honest, strong, and vulnerable all at the same time.
This is a story of our family and Zein our 11-year-old fearless son, a four-time cancer victim. The final chapter has not been written. We have no idea how or when it will end….but truth be told…..we are tired, we are burned out, but with our faith we are strong! We are still standing and we will never ever give up! Thank you for supporting our journey and for your generosity!