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A child with Trisomy has a 5% increased risk of getting a cancer called Wilm's Tumor. This is a form of kidney cancer. Our son was diagnosed with nephroblastomatosis when he was 15 months old. This condition is tumors which left untreated would turn into Wilm's tumor. He had multiple tumors on scans, and we were told his kidneys almost looked like Swiss cheese because of all the tumors. 

Receiving approval to begin treatment was a giant weight lifted off our chests. Now came the hard part: the treatment.

The first step was to undergo surgery and have a central line called a port-a-catheter placed. This would be implanted under his skin on his chest and would be accessed with a needle during chemotherapy treatments.

We set surgery date. And then it happened.

Our son had been so healthy, but we were once again headed into the fall and winter months. Our older kids were back in school being exposed to lots of germs. Illness hit our house, and it hit with a vengeance.

We ended up in the ER at 3am one night because our son was needing a large amount of oxygen in addition to his breathing machine he wore at night when he was sick. Normally, the breathing machine was enough, but this illness was proving to be strong. He was struggling. He was coughing. There was so much mucous he was choking and vomiting on it.

We had not yet ventured going to the ER. It was and still is an experience we don't want to have. But, our son was so sick.

We arrived, and they administered breathing treatments. The treatments they chose had an adverse reaction in our son's body, and his heart rate sky rocketed to 220 beats per minute. He needed a lot of oxygen, and he was choking and vomiting.

We were admitted to the hospital.

This was our first real sick stay in the hospital. His lungs were irritated and he was having trouble breathing. Consequently, there was no way he could have surgery to have the central line put in, nor could we give him chemotherapy when his body was trying to fight this infection.

Anesthesia wanted to wait at least four weeks after he was better before doing the surgery. His lungs needed to be at their top performance before going into surgery. We could not risk him getting pneumonia from doing the surgery too soon after such a big illness.

It was so hard waiting. I felt like each day, the risk of his tumors spreading or turning cancerous increased. 

The only day available for surgery was Halloween. This was going to be the first Halloween we were actually going to dress him up and show him off with his brothers. His first Halloween, he was so sick from colds. We were angry that he would not only miss his first real Halloween celebration, but that we might also miss the opportunity to celebrate with our older boys because of surgery and starting chemotherapy. But, getting our son healthy was the most important, so we took the date.

Surgery was a success, and they discovered that his tumors had doubled in size in the two months since they were first discovered. We checked out of the surgical area and were escorted directly to the infusion center where we were instructed on how to care for our son after he was given his poison.

We had to double wash everything that body fluids came into contact with.

We needed to shower immediately if he vomited on us.

We needed to watch for any signs that he had numbness or tingling.

We needed to make sure he pooped every day because the chemotherapy could cause extreme constipation.

They gave him his first round of chemo, and for the next three days, I watched my sweet baby boy cry, whine, and vomit. 

I just held him, kissed him, and did my best to comfort him.

I reminded him and myself that it was only five months. Just five months. We could do this.

Our son had handled the chemotherapy well, but the central lines did not want to stay where they were supposed to. During our first six weeks, he had ended up in emergency surgery twice…the first on our wedding anniversary, and the second on Thanksgiving.

He had follow up scans done under anesthesia after six weekly treatments. To everyone's surprise, the tumors were almost gone! They had responded so well to chemotherapy!

This wonderful news meant that he was able to move towards the next part of his chemotherapy treatment plan…a higher dose, but less frequently. This meant that he felt sicker after treatment, but it came less frequently. This also meant we were getting there…we were almost done.

His last chemotherapy was really hard on him. Instead of being sick for three days as he had been with all the other treatments, he was sick and vomiting for five. 

But, he was done. His tumors were almost completely gone. The chemotherapy drugs would continue to work in his system.

He did it!

He proved every single doctor wrong that questioned why we would even consider treating a child with Trisomy 18. 

Once again, he proved to be my hero.

Terra Garst

Terra has lived in Omaha her entire life with her husband and four sons. She enjoys being a stay-at-home mom and driver for all her children's events. She is a nurse and uses creativity to get things done! Terra is Nebraska's state chapter chair for Support Organization for Trisomy 18, 13, and related disorders (SOFT) as well as their prenatal outreach contact. She also volunteers for Hope for Trisomy. ...

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