A lot has happened. I do not want to repeat information from previous posts. So I will just give a chronological synopsis of the last week of December and update from there.
- Nico develops a combination of symptoms including: severe leg pain, initial constipation, then copious diarrhea, vomiting, low-grade fever, cough and runny nose.
- In addition to the above symptoms, Nico has an allergic reaction to walnuts – hives, swollen hands and face. This reaction results in trips to urgent care and then clinic.
- We receive an email from our oncologist regarding the results of a metabolite test performed after Nico’s blood revealed both an elevated ANC and liver enzymes. The results show that Nico is preferentially metabolizing one of the main chemotherapy agents into a metabolite that has both no anti-leukemic properties and is extremely toxic to the liver.
- By December 23rd, Nico’s fever progresses from low-grade to high, and oncology instructs us to take him to the hospital. The ER draws blood and runs a viral panel, but we are ultimately discharged because his neutrophil count was close enough to the cut off of 500 (under 500 with a fever means automatic hospital admission). The very next morning, we receive a series of phone calls from the oncology department stating that we should not have been discharged and must return to the ER immediately. Nico has parainfluenza and his counts are all dropping.
- Just like the first visit, the second trip to the ER takes forever and is unnecessarily traumatic because the ER nurses are not comfortable with Nico’s implantable port. Never mind that this happens on Christmas Eve and immediately after Nico’s grandmother’s much anticipated arrival to our home.
- We end up in isolation due to the virus. We have no idea when we will be discharged. It all depends on Nico’s counts. Instead of a smooth, gradual increase in blood counts, Nico’s counts creep up and then crash again.
- We realize that we are approaching the two-year mark since initial diagnosis (January 2, 2013). The period in which relapse most likely occurs is between 2 and 4 years from diagnosis/remission. We approach this date believing that the 6MP has not been therapeutic for the last two years.
This series of events culminates into one of the most stressful periods in memory.
At least in teaching hospitals, every day each patient’s healthcare team (attending doctors, fellows, residents, nurses, social workers and case managers) meets to discuss the patient’s case and plan of care. In Salt Lake City, these discussions occurred with the parents of each child present (we only heard our own child discussed). Parents can listen to exactly what the doctors are thinking about their child’s case and what the planned course of action is. At our present hospital, this discussion does not include parents, but happens behind closed doors. After cases are discussed, the attending oncologist, fellow and resident visit each patient (masked, gowned and gloved in our case), and answer parents’ questions. There is a feeling that each set of parents have been sized up. Jeff and I both got the feeling we had been labeled. The doctors seem guarded in how they spoke to us, careful about how and what they relayed. I felt like we were not in the loop. I felt like I had to ask the right question to elicit answers. It felt like performing a cross-examination – adversarial. We were not part of the team. I am careful to describe this experience as how I felt, not what I thought, because I was so highly emotional by this point that I could not trust my perception anymore. That actually added to my anxiety. I did not feel like I could trust anyone around me or myself. These doctors were strangers to us. It took us a long time to trust our healthcare teams (both past and current). It took our healthcare teams (both past and present) a long time to trust us. This mutual trust was not present and Jeff’s and my anxiety levels were high.
The above dynamic resulted in Jeff and I questioning pretty much everything. I will spare you all the gory details and weirdness and skip to the end and to the answers (as complete as the answers stand currently). On our final day at the hospital, the fellow met Jeff and I halfway and agreed to add an extra blood draw that evening. If Nico’s ANC was 200 or above, he would agree to discharge us home. That evening’s ANC ended up being 210, and we were discharged that night. But before that occurred, our primary oncologist paid us a visit in the afternoon. Our doctor was in clinic that day, not on the in-patient unit. We assume that he came to our room because we asked for him, and because I think our in-patient team was sick of us.
The bottom line:
- We are going to have to go to clinic weekly for blood draws while we figure out doses again. We are on a chemo hold for now while Nico recovers. I have no idea what combination of drugs we will end up taking. Our doctor said he has not decided on a course definitively. After Nico’s counts recover, we will discuss it then.
- Our primary oncologist now questions whether Nico’s liver enzymes were elevated due to the parainfluenza virus and not from the elevated metabolite levels. Time will tell.
- If Nico’s liver is not showing evidence of inflammation, even with high levels of this liver-toxic metabolite, then it is really not something to worry about. The results of the test become more important in kids that have elevated liver enzymes AND poor bone marrow suppression. None of these things applies in Nico’s case.
- Thus far Nico’s course of treatment is considered to have gone very well. Over and over we are told that bone marrow suppression is the only variable linked to long-term success. The cause of suppression makes no difference.
- It is apparently really amazing that we went 14 months without a hospital admission.
I do not really have much to add. I am very scared to send Nico back to school during cold/flu season. Nico adores school. He begs to go, and we want him to live as normally as possible. But other people, especially kids, pose a risk to him. I have this constant level of anxiety that never goes away. But this is just our life now. So I guess we need to just deal with it. Maybe everyone lives with some form of this and this is just our brand of stress.
Christmas happened on December 31. We missed Nana B, but it was otherwise a lovely day with much for which to be grateful. I will include a slideshow of various points of our week.
Happy New Year and much love to you and yours!
P.S. After this update, I have posted two videos. "The ANC Dance" -- Nico (and later Nico and his amazing nurse) did this dance to raise his ANC so that we could go home. Think Rain Dance for neutrophils. "What We Do to Pass Time" -- Nico pays homage to two idols, Yoda and Weird Al, through lip-syncing, Jedi technique demonstration and interpretive dance.