Our Childhood Cancer Journey Part 1

“Mommy, I have a bump on the back of my head that hurts.”

In February 2022, our son was 10 years old and mentioned he had a little bump on his head that hurt when he touched it. I checked it out and could barely feel anything. So, I figured it was nothing because he was a playful boy and probably just bonked his head. 

But a few days later he mentioned it again and that it was bigger. I checked and he was right, it had noticeably grown. Two weeks passed and the bump kept growing. My momma instinct kicked in and I took him to the pediatrician.

The pediatrician said it was probably a simple lipoma (a benign fatty growth), we didn’t need to worry, and it could be easily removed in his office. But he ordered an ultrasound just to make sure. During the ultrasound, the tech asked a weird question, “Have you had X-rays for this?” I said, “No”, but that sent up a red flag. Why would we need X-rays for a simple lipoma?

The pediatrician sent us to a general surgeon to discuss the ultrasound results and possible growth removal since the case was too complex for him as a pediatrician. The general surgeon said the ultrasound showed the cyst going into the skull bone and that he would not touch it because it was too complicated. He ordered an urgent brain MRI.

Two days later, our son had the MRI and we got a call after-hours from the pediatrician. He said, “The bump on your son’s head is not a lipoma and the diagnosis is worse than I first thought. The cyst looks like a very rare disease called Langerhans Cell Histiocytosis. I will send in an urgent referral to a pediatric neurosurgeon.” 

Two days of waiting. Long waiting. What is this disease, we wondered?

We learned a little online about the disease but mostly got more questions and unknowns. Only 1 out of 500,000 children gets this disease, and it has recently been classified worldwide as CANCER. The cancer could be in only this one location of his skull, one time and then he has no more. Or, it could be in many organs, bones, and his blood and recur over his lifetime. If the cancer is found in any other location, then it is treated with chemo and steroids. We also learned that very few doctors know about this cancer or how to treat it.

Lord, help us.

Although we had hundreds of unknowns now, there were some things we did know:

• God is still good.

• God knows everything that is going on and he is in control.

• God allowed this to happen and he has a purpose for it.

• He is our provider and will give us what we need to get through it.

• Our son will be fully healed either on earth or in heaven.

• We have millions of people praying around the world for our family.

• The cyst is not life-threatening, but urgent and could turn life-threatening.

• Our little buddy will be OK.

• The thief (Satan) comes to steal, kill, and destroy but Jesus came to give abundant life. (John 10:10)

• What the enemy means for evil, God uses for good. (Gen. 50:20)

• God is still a God of miracles even if he doesn't heal Jordan physically.

• This test will be a testimony to help others.

  
  

Our first miracle: We felt no fear, worry, stress, despair, or hopelessness. We felt total peace!

(I would not have responded in peace if this happened a couple of years ago. Read my story of overcoming fear and anxiety here.)

The two days of waiting passed, and we were in the pediatric neurosurgeon's office being told our son would need brain surgery asap to remove the tumor. This tumor had quadrupled in size in just two weeks and had eaten a 2” diameter hole through our son’s skull. The tumor had also attached itself to the dura (protective covering around the brain) and was putting pressure on his brain and displacing it. The neurosurgeon said there were no other treatment options besides surgical removal because there was a risk the tumor was going to enter his brain and/or primary cranial blood supply. 

Four days later we were at the hospital for our son’s brain surgery.

Do you feel rushed reading this? We sure felt rushed. It all happened so fast. And it still feels weird to say my son had brain surgery. He’s actually had brain surgery, a second skull surgery, and a year of chemotherapy but that’s later in the story.

We were blessed to be put with one of the top neurosurgeons in the country. In our appointment before the surgery, we were promised that he had been practicing for thirty years, never had a complication from his surgeries, had performed hundreds of this specific procedure with zero problems, and that our son would only need to stay in the hospital overnight and would be up and moving around the next day like normal. That sounded like pretty good news to us. We had no other choice at that point, so we trusted our son was in good hands.

The procedure was supposed to take about 45 minutes. The neurosurgeon said his plan was to remove the tumor, cut out part of the skull that was around the tumor to make sure he got all the cancerous cells, scrape off the surface of the dura, and then fill in the hole in his skull with a bone plate and titanium mesh.

My husband and I sat in the waiting room during the surgery.

• 45 minutes came and went. No doctor.

• An hour passed. No doctor or nurse with a report.

• We were beginning to wonder what was going on.

• 90 minutes had now gone by.

• Nearly two hours after surgery started, the neurosurgeon came in with a report.

______________________

The Surgeon’s Report:

Our son’s surgery had gone well, and he was in recovery. The procedure took longer than expected because the tumor had grown even more in the four days between our appointment and surgery. So, the surgeon needed to change plans for the bone plate. He also took a little more time cutting open the dura and looking at the underside to make sure cancer had not entered our son’s brain.

Once the surgeon believed he had cut and scraped out all the diseased cells, he put titanium mesh between his brain and skull, sealed the dura with gel, placed the bone plate, and stitched our son back up. The surgeon said he expected our son to recover quickly and be home the next day as normal. He told us that he had given him some anti-seizure medicine as a precaution. And he did not think our son would be in much if any pain, so he would not need narcotics.

______________________

A few minutes after the surgeon’s report, we were able to go back to the recovery wing with our son. He was sleeping and only had a small bandage over the large incision. We planned for my husband to stay the night with our son, and I would go home to be with our daughter. Then the boys would come home the next day.

Oh, how simple those plans would have been compared to what happened.

What was supposed to be an easy overnighter at the hospital turned into four grueling days of medical challenges, lots of waiting, and more unknowns. Both my husband and I stayed with our son at the hospital, while our daughter was staying at home with my parents.

Our son’s body reacted very poorly to the morphine and anti-seizure medication. He was rushed to a CT scan to check for brain swelling or bleeding. He could not sit up or stand up without vomiting. He could not keep down any food or liquid. His pain was very high. He was dizzy, nauseous, could not walk without assistance, and not more than a few steps without throwing up and needing to sit. And his body would not pee, even eighteen hours after surgery and being pumped with endless IV fluids.

He was miserable and the doctors and nurses didn’t know what was going on. I pleaded with the Lord on the hospital floor, asking him how to pray because our prayers didn’t seem to be working. (You can read that story HERE.)

A few days of challenges passed and thankfully, our God is good and we got some answered prayers and answered questions. Doctors stopped the morphine and the anti-seizure medication. Our son was responsive and awake, he could walk without help, he went pee, and he was not vomiting anymore.

It was FINALLY time to go home!

His recovery at home went well, and we thought the biggest challenge was going to be keeping him calm for four weeks until he got clearance to return to normal activity again.

But then his surgery site started swelling… A LOT.

I contacted the neurosurgeon and he said the swelling was normal and would go away. The swelling looked like a softball on the back of my son’s head. That did not seem normal. So, I pressed the surgeon to let us come in and have it looked at and drained. When the surgeon saw our son’s head, he agreed it was more swelling than normal, but the draining should fix the problem. The next day, my son woke up and the swelling was back. There was also something hard floating around in the swelling pocket.  

He had a STAT CT scan that showed the bone plate had dislodged and was separated from his skull. So, now he had a 3” hole in his skull, no bone plate protecting it, and lots of cerebral spinal fluid swelling his scalp.

We got a call from our neurosurgeon saying this was his first complication from surgery in 30 years…lucky us…and that our son would need a second surgery. But we believe God uses all things for good and we believe he allowed this trial for a reason. We have learned so much and grown our faith a lot through this journey.

So, three weeks after his first surgery, we returned to the hospital for him to get his skull fixed. We were ready this time for anything. We packed our bags, even though we were told he wouldn’t stay overnight. We have learned that you just never know what will happen in life! But, praise God that it is all in his hands.

This time the surgeon planned to repair the bone plate and secure it with a titanium mesh overlay with screws. Nothing would make it budge now! The surgery went smoothly, he had no reaction to the anesthesia, he needed no pain or nausea meds, he was up and walking around, eating normally, and we went home two hours after surgery! We were amazed! Compared to our first surgery experience, this was a miracle! Praise God.

And he had no more complications. The swelling was minimal and went down normally. The four weeks of being calm came and went without issue. And he got the clearance from his neurosurgeon to go back to regular activity!

Because Langerhans Cell Histiocytosis can occur anywhere in the body, the standard treatment protocol is to do full body testing to ensure it is nowhere else. We worked with stellar oncologists at UCSF for all the testing. He needed full-body X-rays, brain MRIs, an abdominal ultrasound, a full-body PET/CT scan, bloodwork, a skin biopsy, urinalysis, and a genetics panel. Phew. It was a lot of testing.

The initial report back from the oncologists was that they felt he was at least 75% clear from having cancer anywhere else in his body. They did not find any other lesions and no evidence in his blood of cancer. Their only two concerns were one lymph node in his neck that was enlarged and lit up on the PET/CT scan, and a lesion on his brainstem. The lesion on his brainstem could be anything from a birthmark to a low-grade glioma (slow-growing brain tumor). Because of the location, there is nothing to do but wait and see if he ever has symptoms. They cannot biopsy the brainstem because it’s too risky.

They followed up four months later about the neck lymph node and did another MRI in six months for the brainstem lesion. There were no changes or new lesions so they said they felt safe saying he was 100% cancer free. They told us he had a 90% chance of never getting that type of cancer again.

Our cancer childhood journey seemed to be coming to an end, and no one expected he would get cancer again. But 18 months after his first tumor, he started complaining of jaw pain and I just knew the cancer had come back. Read part 2 of our childhood cancer journey HERE.