Rare Disease Lottery: Blondie’s Story

by | Nov 7, 2021 | Uncategorized | 0 comments

“Your son has the immune system of a cancer patient.”

Sitting in the cold and sterile hospital room, my husband and I stared at the doctor in shock. What did he say? I blinked and looked at my husband, who looked just as confused. The symptoms, the testing, and the bloodwork all led to this moment, and it didn’t compute.

“He has no ability to fight bacteria.”

My insides recoiled. My son was sick? Cancer-patient sick?

“His blood work shows he is making plenty of white blood cells. However, his immune system is killing off his neutrophils – the parts which fight bacteria. The standard number of neutrophils for a healthy person is 1,500-3,000.”

“Well, how many does he have?” I asked desperately. 


In the beginning, symptoms were mild but persistent. However, in the following days, weeks, and months my son’s condition gradually declined, and the reality of our circumstances revealed itself. We were in the fight of our lives.

Because of the nature of his disease, every single fever meant a trip to the emergency room forty minutes away, where he would receive infusions and antibiotics. Often, we ended up in the hospital for days while he fought off a virus. Other times, the massive infusions of broad-spectrum antibiotics would save his life – we know these emergency treatments saved his life in at least three instances of bacterial infections.

We fought to keep our Blondie alive for five years. And our fight was invisible. At that time, no one outside the medical community understood masking to prevent disease spread or isolating to keep viral spread to a minimum. Indeed, many people understood that he did not have cancer, so how could he be so sick? Why did we wash our hands so much? Why did we never want to touch something like elevator buttons or handrails? And why in the world, did the doctors want to treat him with medication given to cancer patients?

We took these precautions because something as simple as the prick of a blade of grass set into motion a deadly chain of events. Eczema turned deadly and bloomed into severe MRSA infections. Numerous minor scratches never healed – only oozed because there were no neutrophils to make a scab – and exploded into out-of-control wounds requiring antibiotics infusions.

At the time, we attended a mega-church from which I had been a part since its infancy, but our attendance slowly dropped. Friends went on with their lives while ours screeched to a halt. No mid-week small groups, Bible studies on weekday mornings, or birthday parties. We even pulled our other son from preschool because he brought home too many viruses. 

And we made decisions no parent should have to make.

  • bone marrow biopsies
  • countless (literally countless!) injections
  • medications for cancer patients with long-term side effects

We endured what no parent should have to take.

  • nights alone with our son, praying his fever drops and he comes out sickness one more time
  • despite knowing better, begging God to give the illness to you because you would gladly, joyfully suffer if it meant your child would be free
  • Fasting, praying and laying hands on our baby in tearful prayer only for healing not to happen

Our souls and heart wept daily for him. For our family as a whole, yes, but primarily for what he endured. Nightmares plagued us, visions of a funeral we didn’t want, trying not to imagine life without the entire wholeness of our child.

I became a nurse overnight, staying up until late into the evenings studying every medical journal and article I could find. I became an advocate for the unique needs of Blondie, (of course, he couldn’t be a typical AIN patient, he had to be the “worst case his doctor had ever seen”).

We changed homes to suit his arthritis better, we changed churches to a small one we could attend as a family, and our children changed schools. 

The years passed, and we accepted what we could not change – God’s mind or this disease. We fell into a routine of regular blood draws, isolation, and at-home injections of a medication that saved his life. It didn’t heal him or cure him but helped us manage the disease.

For five years, we endured the high calling given to us.

And overnight, he went into remission.

Yes, that abruptly.

One Saturday morning, we drove him to his weekly blood draw only to see his neutrophil count was sky-high. I still remember the number – 44,000 neutrophils.

Sitting in the van, just outside the hospital, my husband and I stared at each other in shock. What did this mean? The years, the pain, the testing, and the sickness all led to this moment, and it didn’t compute!

We stopped the medications and held our breath for every blood draw. However, the numbers never changed. Our son went into remission.

I have no idea why God spared my son, but I can only tell our story of healing. We endured a lot for a very long time, but ultimately God chose to heal him, and I can only be thankful to God for His power displayed when everything circumstantially led toward us losing Blondie.

I tell stories to Blondie. Stories of God’s faithfulness and how He provided. We reassure Blondie that God always has a plan, and what He calls us to do, He will equip us to do.

Ironically, Blondie remembers very little. Our compassionate son sometimes feels guilt, which we try to shield him from, because he knows how this disease changed us. I reassure him he doesn’t need to remember, the lessons were for us. We remember enough.

Recently, we celebrated Blondie’s tenth birthday. Double digits! A birthday we weren’t sure he’d ever see came and went with our hearts bent toward a better understanding of God’s sovereignty and trustworthiness. 

These things I know for sure: God’s promises to sustain us are true. His promises of being a shelter in a storm are real. His lovingkindness is genuine. I know this because I have lived it.

After all this time, I’m convinced there are special crowns in heaven for parents who watch their children suffer. If I receive one, I can’t wait to throw it at Jesus’ feet, for He is the only one worthy to receive it.

Joel 2:25-27

Then I will compensate you for the years, that the swarming locust has eaten, the creeping locust, the stripping locust, and the gnawing locust—My great army which I sent among you. You will have plenty to eat and be satisfied, and you will praise the name of the Lord your God, Who has dealt wondrously with you; then My people will never be put to shame. So you will know that I am in the midst of Israel, and that I am the Lord your God and there is no other.


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