Our first night in the PICU (Pediatric ICU). The constant beeping of the monitoring equipment made the night's sleep challenging to say the least. And the conversation with the Oncology team was still ringing in my ears when I woke up: Ronan's Uric Acid levels are high, which is a sign that there are tumor cells breaking down in his body.... suspected Lymphoma or Sarcoma but need to biopsy his lymph nodes to know for sure.... need to drain the fluid in his right lung creating difficulty in his breathing and will test that for cancer cells too. Today was the day that all this would happen, the day I would know my son's cancer diagnosis. Our amazing PICU nurse brought me a large cup of coffee and I swizzled it down. A big day ahead....
Our amazing Child-Life Specialist, Taylor-Grace, introduced herself to Ronan and talked him through what would happen in the Operating Room (OR). Because of his mediastinal (mid-chest) mass and the fluid in his lungs, he would be awake for the procedure today. Heavily medicated so he wouldn't really be aware of what's happening or remember it afterwards, but awake nonetheless. The Anesthesiology team determined it wasn't safe to put him under general anesthesia at this point. So we discussed shows he could watch on an ipad Taylor-Grace would hold during the procedure, he chose The Flash, and off they went. I walked with them as far as I was allowed, though the Operating Floor with the underwater animal theme. As we walked by sea turtles and seals on the wall, I was reminded of our trip to Maui last October, where I got to snorkel and surf with turtles with Ronan, whose name means little seal. I never could have guessed what lay ahead for this little boy just 7 months later. With tears in my eyes, I said goodbye and waved seemingly happily before the procedure, with the incredible Child Life, Interventional Radiology & Anesthesia teams promising to take good care of my boy. I knew they would but I was still terrified, wishing more than anything that I could take the place of my son on that OR bed, that I could save him from all the pain and suffering that lay ahead. But instead I put a brave face on and helplessly watched him be rolled away.
When the team brought him back to his PICU room ~2 hours later, their mood was upbeat and, well, downright delighted. The Interventional Radiologist who operated on him, Shellie Josephs, is an incredible combination of energy, insight and southern warmth. She briefed us on how well the procedure went -- how they removed nearly 2L of fluid out of his right lung with the chest tube and how the lymph node tissue they biopsied looked good. But at least equally rewarding to hear was her description of Ronan as a "rockstar" -- sharing how he kept the team of ~6 entertained through the procedure with stories of Keefe (the pig he is raising for the San Mateo County Fair through 4-H) and Keefe's girlfriend Gibby, and sharing all about the responsibility of raising a hog. Apparently the anesthesia encouraged the inner entertainer in him to shine through brightly. And it was well received.
The only thing they weren't able to accomplish in the surgery was the PICC line placement (the central line through which they would draw labs and deliver chemo) as he declared himself done after the lung tube and lymph node biopsy. So we waited for the cardiac RN team to come to his room for placement with local anesthesia -- waited an agonizing 6 hours while he continued to be NPO (no food or drink), which he had been since midnight on Monday given the morning's procedure. When Ronan awake after his post-anesthesia nap, he declared he was craving Bok Choy, so I asked a friend to pick up Chinese food for us and drop it by the hospital. The Chinese food was thoroughly enjoyed after that incredibly uncomfortable and anxiety-inducing procedure that in the end, unfortunately, was not successful even aided by an ultrasound. The team decided it must be placed by IR tomorrow, in conjunction with a Lumbar Puncture (LP) in the Cerebral Spinal Fluid (CSF) and a biopsy of the Bone Marrow to test for abnormal cells beyond the lymph nodes.
Despite the anxiety around tomorrow's additional procedures, I've never seen a child happier to eat Bok Choy. So proud of this incredibly resilient and brave little boy.
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