Our journey begins

How did this happen to us?

We ask ourselves that question on a daily basis. Last month at this time, we were a happy, healthy family. Our lives weren’t perfect, but for the most part, we knew how good we had it. Our problems were of the usual sort: stress at work, busy schedules, keeping track of finances and an occasional case of the flu. That’s where our journey began.

Two months before diagnosis

The day after Halloween, a Thursday, Madeline was sick with the flu. I asked Andrew how he was doing and he mentioned that he had a stomachache. Who doesn’t on the day after Halloween? I made a mental note to make him a green smoothie as soon as I could get to the store for supplies. He has a history of minor digestive problems and I figured that would fix it, because it usually did.

Over the weekend, Andrew starting having painful abdominal attacks. They immobilized him, but they were brief and only happened about once a day. When they were still happening on Tuesday, November 6, I left a message for his pediatrician asking for advice before we left for Kindergarten. I was volunteering at the school that day, so I was already there when he had two more abdominal attacks.  I checked him out and called the pediatrician, who gave us an immediate appointment. I was advised that it could be a virus, but that it was probably best to bring him in.

The pediatrician looked him over and recommended that we go directly to Primary Children’s Medical Center (PCMC) in Salt Lake City to get an ultrasound for intussusception, which is where the bowel telescopes inside itself and can cause big problems. At PCMC, the radiologists found an enlarged appendix and we were given the option to stay there for an appendectomy or go to the hospital near our home. We opted for our home hospital. Andrew had an appendectomy that evening, which went well. I watched the election results from a painfully uncomfortable pull-out bed in his room.

Waiting for appendectomy

We were discharged the next morning and he was acting like his old self, despite a couple more short abdominal attacks, until he had an attack that wouldn’t quit at about noon on Thursday, November 9th. I called his surgeon and the nurse at the hospital who recommended a laxative and a heating pad. By the time we got those going, he had become lethargic. He was moaning and vomiting often.

After a couple of hours and more phone calls, we decided it was time to go to the Emergency Room. We spent five anxious hours there while he drank the contrast liquid and had a CT scan. The CT revealed an intestinal blockage and the ER doctor got Andrew’s surgeon on the phone. They guessed that he had an ileus, a common complication after abdominal surgery where the intestines shut down temporarily. They guessed that his system would start up again after a few days in the hospital, but they recommended that we bring him to back to PCMC, just in case it was something more serious. They put a tube down his nose to suck out fluids from his stomach and that was a terrifying experience for all of us.

We drove directly to PCMC and checked in through the Emergency Room. The doctors didn’t seem overly concerned because they assumed that his body would start working again on its own after a day or two on an I.V. We were assured that the necessity for another surgery was nearly impossible. During the night, his tube came out somehow. They left it out for a couple of days until his vomiting became worrisome. Putting it in the second time was just as horrible as the first.

They also replaced his I.V. with a sturdier PICC line so they could give him protein and lipids intravenously. They put a tube down his other nostril in an unsuccessful attempt to get a particular x-ray. He continued to suffer from abdominal pain and was not allowed anything to eat or drink for a week. It was miserable.

Taking a break during a walk

By Thursday, November 16, his situation had not improved, so the attending physician decided to operate. Once inside, they found the intussusception that his pediatrician guessed in the first place (we’re keeping her) and a kink in the intestine about a foot farther down. The intestine in between was blocked by something and had died. It fell apart in the surgeon’s hands and we were grateful they hadn’t waited any longer before doing surgery. They cut out the bad part and sewed him back together and we were on the road to recovery once more.

We spent the night back in our old room, but his sodium levels were dangerously low and we were soon moved to the ICU on the 2nd floor for two days where the staff could monitor him more closely. We didn’t realize how private and homey our room in the surgical unit on the 3rd floor had been until we spent time in the ICU, so we were happy to move back upstairs on Sunday, November 18. On Monday, the PICC line was removed due to infection. I didn’t think I would miss it until the antibiotics burned through four I.V.s. in three days. Every time the I.V. failed, his hand and arm swelled up to twice its normal size. A few days ago, another PICC line was installed at the same time as the bone marrow biopsy and lumbar puncture.

Things took a turn again on Monday when our surgeon came to visit in the middle of the day with the report that Pathology had found a lymphoma in the tissue removed during surgery. A tumor had caused both the blockage and the intussusception when his intestine tried to pass it. It was all very sketchy at that point, but we met the oncologists later in the day. They guessed that we were dealing with Burkitt’s Lymphoma. That diagnosis has since been confirmed. Burkitt’s Lymphoma is a highly aggressive, but highly treatable cancer. The odds of being cured are in our favor. We are grateful for such a sunny outlook, but we still fear the worst. We feel like we have already beat the odds in all the wrong ways this month.

On Sunday, November 25, we moved to the ICS on the 4th floor. We have now spent quality time on every floor of the hospital, since Radiology is on the first floor. We are expecting four cycles of chemotherapy over the next few months. The first dose has been postponed for a few days because of ongoing infections from the surgery. Lots of bacteria were set loose in Andrew’s body when his intestine fell apart in surgery and despite being pumped full of serious antibiotics ever since, the infections persist. Chemotherapy will compromise his immune system, so they don’t want to give it when there is known infection. There doesn’t seem to be any worry that the infections will go away eventually, but every day chemotherapy is postponed is another day that an aggressive cancer lives on.

We have been asked many times how we are holding up. What is the right answer to that? I usually respond that we are O.K. We are functioning and doing the things we need to do. Occasionally, we even find little things to smile or laugh about, but there is no way to thrive under these circumstances. While one of us sleeps at home every night, nobody has lived there in three weeks. We are exhausted. We are sad. We want things to go back to the way they were before. We know that even if Andrew is cured, which is likely, our lives will never be the same.

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