Ronan wakes up and straight away asks for ice water. Nurse adjusting monitoring says she will get it shortly. Ronan turns to me and politely asks, “Mom, while I’m waiting for the water, can I please have ginger ale to quench my thirst?” Even first thing in the morning, I'm so proud to have such a polite young man as a my son.
Dr. Rao, a resident from Pediatric Oncology, stopped by to provide an overview of the chemo treatment: The “Pre-Phase” is like a warm up phase before the heavy chemo starts. The goal is to confirm that the tumors respond to chemo, and to shrink the tumors without overwhelming the body. It will be 3 drugs, all delivered through IV: Methotrexate & Hydrocortisone, Cyclophosphamide and Vincristine. And he will be on an oral (PO) steroid, Prednisone, to decrease inflammation / risk of infection and pain and counteract the energy zapping / appetite suppressing effects of the chemo. We reviewed the possible side effects of each medication, including hemorrhagic cystitis (causing blood in urine and bladder pain), peripheral neuropathy (temporary nerve damage causing tingling, numbness or pain in the hands and feet -- “foot drop” when walking is common), irregular heartbeat and mood changes (“roid rage” -- "watch out, mom" the doctor warned, only half joking). The expectation is for him to spend 2-4 weeks in the hospital upfront.
In rounds later that morning, the team noted some heart irregularities (later I learned that this is a common side effect of Zofran). There were 4 beats of NSVP (non-sustained ventricular tachycardia). He was also showing signs of early tumor lysis with high Uric Acid, Potassium & Phosphorus levels (all signs of the tumor cells dying / turning over). To counteract the risk of tumor lysis, he was being pumped with fluids to help the kidneys do their job easier, and given Allopurinol to lower Uric Acid levels, which would help him feel less nauseous. And he started on Sevelamer (phosphate binder), which was basically a horse-sized pill that even adults would find challenging to take. And with the fluids come the risk and discomfort associated with pedal edema (swelling in the feet) so walks 3-4x / day were essential to his recovery.
So I updated the section of our in-room white board with “My Plan for Today” with the 4-walk goal. By late morning with a max dose of Zofran, the nausea is gone and he’s up for a walk to the patio on the PICU floor. We order up a “LTO” burger (lettuce, tomato & onion — his favorite), with potato wedges as well as scrambled eggs with bacon and wheat toast because he can’t decide if he’s in a lunch or breakfast mood at 1pm after not eating well for the last couple days. It is one of those spring days that feel like summer, so after walking out to the patio, we enjoyed a nice lunch, followed by some Mario Kart on the Switch. Soaking up the warmth of the sun and enjoying the view of the the swaying eucalyptus trees surrounding the Stanford cactus garden, we were able to forget about the nightmare we were facing inside the PICU walls — if even only for a few restorative minutes.
Later that afternoon was the conversation I’d been dreading for days. Taylor-Grace, our amazing Child Life Specialist, came to the room with a bundle of supplies to assist with the discussion. She started out by asking Ronan his story. Ronan shared how we went to the Sutter Health Urge Care, how he had an X-Ray there, and blood draw where he nearly fainted. Then how we came to the Stanford ER, had a CT scan and how there was “matter by my liver.” Taylor-Grace thanked him for sharing his story, then she took out some white beads from her bag and named them White Blood Cells. Ronan knew what they were “They fight off bad stuff” he shared. Then red beads for Red Blood Cells. “I don’t remember what they do” Ronan pondered, so Taylor-Grace explained how they carry oxygen throughout the body. Then blue beads she named Cancer Cells: “We all have them but some people have more…” “Like me!” Ronan interjected. His voice resonated with bravery, but his eyes were locked on me, and I recognized in his eyes the sheer terror and helplessness I knew he was feeling. Taylor-Grace and Ronan put all the colors of beads on the white play dough ball with Ronan and then she explained how there is medication to fight off cancer cells. “Thank god it’s not radiation” Ronan jumped in, nervously. Taylor-Grace asked if Ronan knew what chemotherapy was. He replied “I’ve heard the word but don’t know what it means.” She explained how it will help the “matter” (as Ronan called it) or “blasts” or “tumors”, referencing the ball of play dough with the 3 colors of beads on it. “Is chemotherapy like a pill?” Ronan asked. “”It can be … and also it can be through a PICC line like you have or a Port too.” Ronan was quiet and reflective. “What other questions do you have?” She gently asked. “With the play dough ball in hand he responded with a smirk, “What do I do with this?” She offered to take it. “Any other questions?” … “None” was his reply. “How do you feel?” … “Good. Just one question: is there a chance I could die?”
After Taylor-Grace and his dad left the room, I knelt down by Ronan's side of the bed at eye level with him and asked him, "So how are you really doing?" He reflected for a brief moment before responding playfully, "Well now I can brag to all the other kids that I've had cancer." I am so relieved that despite receiving some of the worst news possible, he has not lost his sense of humor.
In further consults with doctors later that afternoon while Ronan slept, we learned that there were no cancerous cells yet identified in the bone marrow or spinal fluid, but the pathologists were still looking. They were running a FISH test and flow cytometry to try finalize the type and stage of lymphoma and expected to conclude their report by Monday or Tuesday. This gave us hope that it was Stage III and not Stage IV, which comes with a shorter and more mild treatment regime. We also discussed a Port being placed after 2-3 weeks as a longer-term central line for the chemo.
That evening, we had a longer meeting with Dr. Crane and Dr. Rao from Pediatric Oncology. They shared a recent update from pathology that they had just found questionable cells in the spinal fluid. They were evaluating them further. They suspected Burkitt Lymphoma given the multiple masses found in Ronan’s abdomen and the rapidly growing nature of it. (I later learned that one study showed Burkitt Lymphoma masses can double in size every 24 hours.) They wanted to start the Pre-Phase for Burkitt that night. We did want to get a second opinion on the Pathology results (which they understood and supported) but we agreed to start the Pre-Phase since that was the same regardless of phasing determined by the Pathology report. And so we braced ourself for the life-saving power of chemotherapy that would also destroy so much in its wake.
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