The day started with a bang. Dr. Crane and Dr. Rao from Pediatric Oncology delivered the news as delicately as one could "Your son has mature B-cell Lymphoma." It's official: Ronan has cancer. The fluid drained from the lungs yesterday was confirmed to be cancerous, as was the lymph node biopsy tissue. It is at least Stage III given the multiple lesions. A bone marrow and CSF (cerebral spinal fluid) biopsy is required to see if it is Stage IV. Expectation was 6-9 months of chemo, most at home. The specific treatment will be determined when we know the exact type of mature B-cell lymphoma through genetic testing. Mature B-cell lymphomas are apparently much less common than an immature B-cell lymphoma. But the good news is that there are two renowned lymphoma specialists on staff, Dr. Link and Dr. Marks, who are both highly regarded and sit on committees for the Children's Oncology Group (COG), whose international studies set the treatment protocols for all pediatric cancers (since the sample set is so small, hospitals need to collaborate with patient treatments to have statistically significant study results). I asked the dreaded question: what's the estimated prognosis based on what we know now? 70-90% a horrifying statistic for any parent to hear.
Today's procedure was scheduled for 10:30am: the LP with CSF biopsy and first intrathecal (IT) chemo administration, the bone marrow biopsy, and the PICC line placement. The anesthesiologist today was an upbeat young man who connected with Ronan about growing up on a farm in Texas. Apparently, word got around about the pig talk yesterday.... Ronan's respiration was looking strong enough today to add some Fentanyl to the Versed & Ketamine cocktail from yesterday's procedure. The anesthesia yesterday made him loopy and forgetful enough to get him through without psychological trauma but the hope was to make him more sleepy today -- closer to the general anesthesia they would normally provide a child without the respiratory challenges Ronan had. It was the same amazing IR doc — Dr. Shellie Josephs — from yesterday doing the procedures and I knew he was in good hands. Before they wheeled him to the OR, Ronan confirmed: "Am I going to have more of those trance drugs from yesterday?" Taylor-Grace assured him he would, and his anxiety visibly lessened. They were off.
About 2.5 hours later, at 12:50pm, the crew returns to the PICU room. Taylor Grace and the rest of the 8-person team commended Ronan for being"awesome"... "a rockstar" who "barely flinched with the bone marrow biopsy" and "slept the whole time". Music to my ears. As they transitioned him to the telemetry machine (tely) in the PICU, Ronan half awakens from sleep and asks "Did they put the central line in?" "Yes they did, baby... you did great." I assure him. "I don't remember anything..." he replies before asking "Is Elliot coming in person today?" "Yes, do you miss him?" "Yeah ... and Piper [our dog] ... and showers." Well at least he has his priorities straight. :) I tell him the doctors and nurses said he was the best patient today. He momentarily flashes a big smile when and then murmurs, "They probably tell that to every kid" before dozing off again.
Dr. Link and Dr. Marks stop by the room to chat with us about the diagnosis. We step out of the room so Ronan wouldn’t hear, since we hadn’t yet had the dreaded “you have cancer” conversation with him yet. Dr. Link shared his confidence in the treatment, how it has a >95% “cure rate” overall (defined as the cancer going away and never coming back). Even if the mature B-cell lymphoma is in the spinal fluid (Stage IV), it is still >75% “cure rate.” We would await for the genetic testing to determine the specific sub-type before discussing treatment approach, but these are well defined by the Children’s Oncology Group. He explained how the chemo kills all fast moving / growing cells, which includes the cancer cells but also the cells in the GI and mouth (with mouth sores a common side effect), hair (loss will begin 2-3 weeks after starting chemo and continue for 2-3 months after chemo), blood cells like hemoglobin (which leads to anemia and nosebleeds and often require blood transfusions throughout chemo). The expectation was for Ronan to begin chemo in a couple days.
At 2:25pm Ronan awakes from him post-op nap and announces “Good morning” with all the joy and optimism a good nap portends. But after the anesthesia for the morning surgery, he is quite nauseous. A common reaction from the Fentanyl, but that was the best option for his procedure given his current condition. The poor little guy can’t manage to keep much down that afternoon but he rallies for a much-awaited visit outside the hospital lobby with his brother Elliot, his dog Piper, and his dad’s brother, Uncle Matt. Elliot is thrilled to be able to be Ronan’s helper and wheel him around in the wheel chair a bit. Piper (a mut we rescued who is scared of basically everything), was terrified of the wheelchair, but I held her up so she felt safe and Ronan could pet her soft fur. The visit was brief: he asked to return to the room after about 15 minutes — he was tired — but it meant so much to get the brothers together, however briefly.
The rest of the day was spent fighting nausea with Zofran, a Scope patch and a hefty dose of Mario Kart on the Nintendo Switch borrowed from Child Life. I was the diligent record keeper for Ronan’s placings. For those curious: 2nd, 1st, 3rd, 2nd, 1st, 4th, 1st, 1st, 2nd, 2, 1st, 8th (lab draws during this one), and 2nd were the placings announced.
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