Chemotherapy spanned over a long 6-month time period from December 26th until her last dose of chemo on Mother’s Day, May 14, 2017. Teagan’s chemotherapy included 6 rounds of chemo, inpatient stays of 5-9 days. I am not sure how better to put this, but chemotherapy was a long and extremely rough journey. Little did we know, but right from the start Teagan also caught Norovirus (extreme vomiting and diarrhea) that did not end for the next three weeks while in the hospital. I remember wondering to myself how we were going to make it through 6 months of treatments if they all were going to be this daunting. However, when Teagan was in her hospital isolation room, wearing her Elsa pajamas, surrounded by her toys and snacks (puffs and goldfish), and mesmerized by watching Frozen, it provided me with deep joy.
We soon learned that the inpatient chemotherapy stays were the most predictable parts of our lives. It was when we were at home, waiting for the next 7-10 days when things were the most difficult. During these times Teagan’s immune system disappeared, and we had to cautiously check her temperature regularly to see if any infections were brewing. Confusion set in for us as it was never clear whether Teagan would be okay at night, or if we should get her immediately to the ER, we lived in fear of making the wrong decision. Many a nights Teagan would wake up puking, so we often had to go to ER to see whether it was her shunt or the chemotherapy side effects.
The saddest part about the chemotherapy was in between her treatments where her immune system would “tank” and she would have no absolute neutrophil count (the white blood cells that fight against infection). During this time, we could not have Teagan around any other children (including her brother and best friend Judd) and she had to stay at home away from any other potential germs.
Throughout Teagan’s chemotherapy she got the Norovirus twice, Respiratory Synctial Virus (RSV) once with temps reaching 105, Clostridium difficile (c-diff) which is extremely stinky and fierce diarrhea, mucositis (painful inflammation and ulceration of the mucous membranes lining the digestive tract), and hives. In addition, her shunt was adjusted in December as the Norovirus symptoms appeared as if her shunt was not allowing enough cerebral spinal fluid out of her ventricles in her head, so the doctors opened her drain to allow for more drainage. Four months later, as we lay next to Teagan when she did not wake up and slept for three days straight, we found out her shunt was over draining. I remember staring out the window and wondering, “are were going to lose our baby at this point, as Teagan’s eyes had gone cross eyed, she was not talking, she was not eating, she was not moving her limbs, and she would only lay flat.” The oncologists were questioning the shunt and the Neurologist were questioning the side effects of chemotherapy and no one could quite figure it out.
We finally could take Teagan home after she was able to keep down a little fluids and food. She came home and immediately continued to lay flat for the entire day on the floor. I stared and began praying as I was beside myself wondering if we would get our baby back. My husband spent hours researching on the internet. He figured out from two studies he found that her shunt was likely over draining. We called our Neuro-Oncology Nurse that day and we could get her in to adjust the shunt and close it back up to 1.0. Exactly 24 hours later, Teagan’s eyes uncrossed, she began to talk, she wanted to walk, and she came back to us. It was truly amazing to watch this unfold.
Teagan finished round five of chemotherapy on April 18th. She was remarkable during chemo – riding around on her IV pole and making friends. For Teagan’s last round of chemotherapy, on Mother’s Day, she did not have to return for an inpatient hospitalization—despite catching c-diff diarrhea and the Corona virus (cold) without an immune system. How many of us, with our immune systems at full strength, could do the same?
This was truly miraculous!