Baby boy fights consecutive bouts of acute leukaemia

Nettie's heart shattered as she drove away from her son Theo for the first time.

Ever since the birth, the American mum had been dreading the moment she would have to return to work, no matter how much she loved her job.

It would take weeks before she could drop baby Theo off at child care without crying.

But just as she finally got used to the routine of being a working mum, everything changed.

"I picked Theo up and I happened to notice that his little legs had bruises all over them between his knees and ankles," she first wrote on Love What Matters.

"He was only four months old so he wasn't crawling yet.

"There was really no obvious explanation for the bruises."

But when Nettie's husband, Nate, took Theo to the doctor, their concerns about his bruises were quickly dismissed.

It was only when the couple pushed for extra blood tests that the devastating truth was revealed - Theo's white blood cell count was extremely high, which meant he most likely had leukaemia.

"Our minds were filled with fear and uncertainty and our stomachs were in knots," Nettie said.

"I distinctly remember walking down that long hallway to our room at the end and seeing the faces of all the nurses looking at us as we walked by.

"That's terrifying as a parent."

Their fears became reality when Theo was diagnosed with acute lymphoblastic leukaemia the next day.

The tiny baby started treatment immediately - with Nettie and Nate relieved to hear he would only need to spend two weeks in hospital.

But as the weeks dragged on, it became apparent that their son wasn't going home any time soon.

In the end, Theo was confined to his hospital room for seven and a half months, spending most of his first year in the sparse room.

"Many days our only goal as parents was to get him to smile or laugh just once," Nate said.

"Many days we failed and there were several weeks he didn't smile at all because he was so miserable.

"Just a heartbreaking little face looking back at you and you could see the pain in his eyes, the confusion of not understanding why he felt this way."

If their son's agony wasn't bad enough, Nettie and Nate also had to face doctors who were convinced their little boy didn't have a chance.

"I heard the ICU doctor say, 'I don't think he'll make it through the week'," Nate recalled.

"The heartbreak mixed with rage was like a wrecking ball to the faith I had been so solidified in prior to this moment."

All the devastated parents could do was hope that their son would defy the odds and pull through and, for a while, Theo seemed to do just that.

"Finally, on April 13th, 2018, just four days after Theo's first birthday, we were able to go home and begin the maintenance phase of treatment," Nate said.

"Sweet victory!

"A battle had been won and we spent the next nine months cherishing every moment at home."

Theo seemed to be getting better by the day, with doctors suggesting that by August 2019, he would be well enough to stop treatment completely.

Then suddenly his blood count plummeted and his temperature spiked; Nettie and Nate rushed Theo straight back to hospital.

It was later that afternoon as hospital staff tried to work out what was wrong that the phone rang.

"Our doctor was on the other end of the line, and his voice sounded like he didn't want to say what he knew he had to tell us," Nettie said.

"The results were back, and it detected a protein specific to leukaemia cells in 0.2 percent of the sample.

"Having been in full remission, there should have been 0 percent.

"I was in shock and disbelief. How could this be happening all over again?"

"The news was absolutely devastating for our family.

"The very thing that we feared and worried about every single day had actually happened," Nettie said.

"The leukaemia had returned in our sweet little boy's body."

But as much as Nettie was furious that the cancer was back, she knew their family was strong enough to fight it.

"Feelings of anger crept up inside of me," she said.

"Anger that my baby had to go through more treatment. Anger that the light we saw at the end of the tunnel was now further away.

"Anger slowly faded into determination. We were determined to get Theo to the best treatment no matter what we had to do, so that's what we're doing now."

Follow Theo's journey on Instagram here. 

This originally appeared on Kidspot and has been republished with permission.

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