Week Two: The Children’s Cancer Hospital Experience

We arrived at the hospital at 10:30 AM for what we thought was the 11:00 AM biopsy. However, we quickly discovered the biopsy now wasn’t till 3:45 PM.

Poor Kohen. His morning fast for the biopsy now turned into an all day fast.

But it wasn’t like we were stuck trying to kill time. We were ushered from one doctor to another to another. Meetings, consultations, papers to sign, advocates to hear from, and on and on it went.

During the busy day Kohen received a chest scan to see if there was any indication that the suspected cancer had spread. The scan revealed it had not. This was one of the very few moments of good news so far during this ordeal.

When the time for the biopsy finally arrived, we discovered the 3:45 PM appointment time was only for checking in. The actual procedure itself wasn’t scheduled until 5:15 PM. Needless to say, this added more frustration to an already long and frustrating day.

Kohen has now been fasting all day long and has not complained once. What a trooper.

Eventually they were finally ready for Kohen to go into surgery. He was pulled through the halls in a little plastic wagon where we had to say goodbye to him at the doors leading to anesthesiology. He smiled and waved goodbye to us as those doors closed behind him.

He is so brave.

Courtney and I went down to the cafeteria (we hadn’t eaten anything in 24 hours) where we dined on the finest of hospital cuisine (well, as fine a cuisine as hospital cooks can produce), and in our case, that meant prepackaged salads. Afterward we returned to the post op waiting room to await the results of the biopsy.

It was around to 6:00 PM when the surgeon–still in his scrubs–found us and took us into a consult room. He said preliminary testing of the biopsy had confirmed our little boy has cancer.

He said the results indicated Osteosarcoma, not the Ewing Sarcoma that doctors initially believed it was.

The difference? Not much.

Treatment will be the same (chemo, surgery/amputation, more chemo), and the survivability rate for our son still hovers around 70%.

If there was any good news in the new diagnosis, it’s that the amount of chemotherapy required for Osteosarcoma is a little less than what is prescribed for Ewing Sarcoma.

Since he was already under anesthesia, surgeons took the opportunity to install a “port” into Kohen’s chest, and running a tube up inside the side of his neck. The port in his chest raises his skin upward like a little mini-volcano. These implants will serve as a means to administer him chemotherapy and other medications once we begin treatment in Reno.

Kohen was still groggy when we were reunited with him. He was then moved to a recovery room where he had a very upset tummy and kept throwing up. Staff suspected it was from the anesthesiology, pain medications, or both.

Eventually Kohen went one whole hour without throwing up (at around midnight), so it was then that we were discharged, and finally left the hospital . . . 14 hours after we arrived.

Unfortunately, by the time we pulled into our hotel parking lot, Kohen threw up again. And that was the story for the remainder of what was left of the night. We tried sleeping but Kohen kept waking up sick. And then, to make matters worse, the pain meds had worn off, so now he was feeling the pain from the surgery in his left leg, as well as the implants in his upper chest and neck region.

We couldn’t get his pain mitigated because he couldn’t keep the pain medicine down. I would have to say it was one of the worst nights of my entire life. My little boy was sick, in pain, and we couldn’t even move him. We felt utterly helpless. All this stress caused my stomach to become wildly upset, too.

After the sun came up I drove to a Walgreens about 15 minutes away to get a medication for Kohen that would keep him from throwing up. When I was about one minute away I realized I had accidentally left the prescription at the hotel room.

At this point I was a blubbering fool. Driving through the tears I figured I was already so close, I’d continue and see if Walgreens could fill the prescription another way.

The pharmacist and his assistant were, let’s say, probably not in the running for that store’s customer service award. However, in spite of their attitudes, they offered to fill the prescription based on the picture of it that my wife texted me, but only after they confirmed with the hospital.

After a while they informed me they couldn’t get a hold of anyone at the hospital to confirm it. This required I drive all the way back to the hotel. On my way back, Courtney texted to tell me the doctor just called the prescription in himself. So, I turned around and headed back to Walgreens again.

After another long wait the pharmacist and his assistant said they still hadn’t received anything from the doctor. Shortly thereafter, I discovered from Courtney that the doctor called the prescription in to CVS Pharmacy, not Walgreens.

I then drove to CVS, still a wreck, and sat in their waiting area for the prescription to get filled. It felt like time stood still. As I sat there with my stomach torn up from the stress and grief, I had to excuse myself to the bathroom to throw up.

How fast life can change. Less than two weeks ago I was living a worry free, happy life without a care in the world. Now here I was: battling to save my son, grieving for his suffering, and vomiting in a CVS bathroom in a strange city far from home.

Take no days for granted.

To be continued.

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