Our Childhood Cancer Journey Part 2

If you missed Part 1 of our childhood cancer story, you can find it HERE.

So here we are, 18 months after our son’s first tumor and life seems pretty normal. Jordan is 12 years old. He has finally recovered from the extreme fatigue caused by brain surgery. He has had all his restrictions lifted for activity, so he can go back to ninja gym class and all other crazy boy activities. No more medical testing. He is sleeping well and overall seems normal. No more signs of cancer in sight!

And then he tells me he has been having jaw pain for a few days. He specified jaw pain, not a toothache. I looked at his face and realized he had swelling on his left side where he said it hurt. There was no waiting this time for a doctor’s appointment, I knew what it was.

The cancer was back. 

I messaged his pediatrician and updated him on the situation. The doctor said to go get x-rays immediately. Thankfully, his doctor knows Jordan’s case and how quickly this cancer grows in Jordan. We waited an unusual and agonizing two days to get the x-ray results. We usually get results within a few hours, but not this time. And when the on-call doctor called, she apologized for not calling sooner since they had gotten the results right after he got the x-rays. 

She told us there was a marble-sized tumor in his left mandible but it had not yet broken through the outer walls of his jawbone. It was official, he had cancer again. 

We prayed for it to stay that size and go away. 

Another Tumor:

Our son’s oncology team at UCSF was notified immediately and they wanted to see him ASAP. A week later we were at UCSF. I knew Jordan was facing emergency surgery that day but hadn’t yet told him. I wanted to see what his team said first.

They said they had been analyzing his results all week and wanted some updated imaging. So they did a CT and MRI and found that the tumor in one week had destroyed the inside of his jawbone and now eaten through the walls of the lower mandible. The two pieces were hanging on by a thread of bone and muscle.

They wanted to operate that night to remove the tumor. This was a big deal since it was a three day holiday weekend and in one day they had organized a team of eight top UCSF surgeons. One of the top hospitals in the world.

They also wanted to start chemotherapy and steroids. We didn’t like the sound of any of this, but we planned to move forward with the surgery to stop the tumor growth.

When he heard the news that he was having surgery that day, he broke down. He was not prepared for that news. But after about thirty minutes, he had adjusted to the idea and was ready to move forward and be brave.

They admitted us to a room in the hospital and started surgery prep. But then some of the surgeons came in and said they were not going to operate, it was too risky. They feared they would break his jaw while operating and would also cause permanent nerve damage in his face, resulting in paralysis.

We felt hopeless. They were not going to operate to stop the tumor growth and they were not going to start chemotherapy or steroids until the doctors came back after the holiday weekend. That meant the tumor would be allowed to grow and eat more of his jawbone. 

After a long talk with the doctors, we decided to start steroids that night. I now have a love/hate relationship with Prednisone. It stopped the tumor growth overnight….praise God. But the damage it would cause in his body over the next year was immeasurable.

After four days in the hospital and one PET scan, eight more CT scans, 40 x-rays, 3 MRIs, and labs, we were able to go home. We were sent home with the heavy weight of needing to choose a year of chemotherapy for our son or not. (We later found out the option of not choosing chemo was not really a choice.)

The next month of my life was one of the most stressful and spiritually taxing ever. 

We were back home, his tumor was shrinking with steroids, and every moment of the day we were praying and debating about whether or not to do chemo. I SO desperately wanted God to supernaturally heal him. I pleaded with God. Cried so many tears that my face swelled and tears ran out.

My emotional pain was not so much that my child had cancer again. I trusted that he would be ok whatever the treatment choice was. The turmoil was from wanting my God to heal him and he wasn’t. I believe God heals. I have seen God heal people after prayer. I wanted him to do it for my son.

And I was battling with a voice in my head that I always trusted was God but it was telling me to not do chemo when everything else pointed to chemo being the best plan. The emotional stress from this internal wrestling was beyond exhausting.  

Every day my husband and I prayed for clarity and guidance. We would feel peace when we would think of chemo but we would feel fear when thinking of not choosing chemo. We followed the peace. And God confirmed it in prayer when he said the voice I had been hearing that was telling us not to do chemo was the voice of the Deceiver. 

I asked in prayer for God to confirm to do chemo from three outside people that I had not been talking to. That day three separate people texted or called me with confirmation. So we moved forward with chemotherapy.

The Chemo Life:

We let UCSF know and we began the weekly trips to San Francisco for chemo infusions. This drive could be anywhere from 1.5 hours to 3 hours each way. I had no idea what to expect besides people telling me it was a marathon not a sprint.

We did what we had to do and every week we packed up our stuff, made the journey, our son handled the infusion process well, and then we trekked back home. The side effects were not extreme like some chemotherapy drugs but they were life-changing. 

• He lost most of his hair,

• he got mouth ulcers that were so painful,

• he experienced nerve pain in his mouth and feet that required opioids,

• he had insomnia for two straight weeks (which means mom - me - didn't sleep),

• he was always exhausted,

• he would get winded from even the shortest of walks or activity, his joints ached,

• and he was gaining weight from the steroids.

Thankfully, the weekly trips only lasted the first six weeks. He had another PET scan and they found the tumor had shrunk and he had no more tumors. That was good news. That meant we would shift to a UCSF trip every three weeks for the rest of the year.

In addition to the heartache from my son having cancer again and the long journeys for chemo and chemo side effects, my teenage daughter was falling down the dark spiral of depression and anxiety. I was more concerned about her life than our son’s. She was in a scary place and it took the power of God to pull her out to the light. Her battle through depression, suicidal ideation, and anxiety was hard, long, and dark. 

A huge praise from our son’s cancer is that it brought our daughter to a personal relationship with Jesus. She has grown up in the church. She has always known about Jesus and made a child’s decision long ago to follow him. But the world had a great influence on her for a while and she was drifting away. 

But when she got the news of her brother’s second tumor, she said she knew God saved her brother the first time he had cancer and she knew he was the only one who could save him again. After the initial trauma of the news, she decided to follow Jesus forever. That decision was the beginning of her breaking the stronghold of depression.

So, our trips to SF continued, the chemo and steroids continued, the side effects continued, but the perseverance, joy, hope, and peace of Christ also continued. Our family grew closer than we’ve ever been. And we have experienced spiritual growth and opportunity like we’ve never known.

Our son finished his last chemo session on September 23, 2024. Which means as I write this, we are currently five months post-chemo.  

Life After Chemo:

I can’t encapsulate the highs and lows of an entire year of childhood chemotherapy into one blog post. But I will say it was a blessed and exhausting journey ordained by God to strengthen us and share his story of hope with the world. The Lord wanted me to be very open on social media about all our struggles and victories. In return, we have received reports of people coming to Christ, returning to Christ, finding hope again after being hopeless, starting to pray again, and feeling inspired to move forward in their hard times. All of these reports, and the fact that our daughter now radiates the love of Christ have all given purpose to our son’s cancer.

We pray he never gets it again. He is still in remission but there is always the chance this type of cancer will return. The medical system doesn’t know much about it or how it works or how to stop it. But we continue to pray.

Our son is now 13 years old, almost 14 and is thriving the best he can after what he has been through. His mental and emotional resilience are so strong. His faith is true and unshakable. He inspires others with his story. And I’m excited to see the plans God has for his life.

He still battles side effects from the treatment. Steroids caused 50 pounds of weight gain on his teen body in just one year. They created insulin resistance and pre-diabetes in a boy that was always healthy and fit. Steroids caused non-alcoholic fatty liver disease, tooth decay, and loosened his ligaments and tendons which results in easy injuries now that he is active again.

But he is still here with us, and so is his sister. It’s not as serious as many stories and we are grateful for the blessings we have in our children.

God led me to write a devotional during our cancer journey so I could share with others how to have hope in hard times. It’s called Hope When Life’s Hard - A 40-day Devotional to Restore Hope in Your Suffering. You can get your copy on Amazon HERE after March 10th, 2025.

Whatever trial you are going through, I pray that you have God to guide you. He doesn’t make the hard times easy but he does make them easier and he makes it possible to come through them stronger than you were before.

Feel free to email me HERE to let me know what you’re struggling with and how I can pray for you.