Our first two weeks here were, as Nico likes to say, “stinky.” When we first met with our new attending oncologist and his fellow (doctor training in oncology specialization), we were very reassured. The oncologist said that he completely agreed with Nico’s initial diagnosis and treatment plan. He said that Nico’s course of treatment would have been the same if I had started with him, and he felt that Nico has done very well. He also said that the most important factor in Nico’s case is his cytogenetics (see the 01/11/13 post if this does not make sense and you really want to know). Like our previous oncologist, our new doctor said that Nico was “just barely high-risk” and that with the extra chemotherapy he received during the intensive phase, Nico has an “excellent prognosis.” Nico really took a liking to our fellow. He is young, but clearly very bright and accommodating.
The reason the overall experience still stunk is because there were a lot of issues in the other departments. It is a long story, and I do not want this post to become a parade of horribles. But the biggest and most consistent problem is the lab. Getting Nico’s routine counts (blood work) used to involve parking in the circular driveway at the hospital 7 minutes away from our home, running just inside the hospital doors to a lab of familiar faces that would greet Nico by name. Yes, it was like the TV show Cheers except with needles. OK, maybe I idealized the familiar, but the blood was obtained via a finger stick (like checking blood sugar) and the whole process took about 15 minutes tops. I would call about 30-45 minutes later and the lab would give me the results. Then I would know if we were getting chemo the next day.
Our new hospital does none of the above. So labs require I drive 45-90 minutes to the oncology clinic, check-in, get Nico’s chemo port accessed (a trauma for Nico), and then we have to wait for results. The shortest turn around thus far has been 4.5 hours and the longest 6.5. And Nico frequently does not make counts (he is neutropenic a lot). So to sum it up, in the last two weeks, Nico and I have made five trips to the hospital and spent over 27 hours there and Nico has yet to get his full chemo regimen (still has not made counts). Keep in mind that we are in maintenance therapy only. Maintenance was supposed to mean that we went once a month for a few hours. It was supposed to mean that life would be more normal, at least most of the time.
Last night we had to go to the ER at 2:00 a.m. because of a fever. Between 5-6 a.m. the ER resident came in to tell me that he had to call the lab and push them because they still did not have our numbers. I just lost it. I really underestimated the stress involved with changing care during treatment. So much is done differently here and it is so incredibly time intensive. The idea of us living with any type of normalcy over the next three years was fading fast. And now Jeff is working almost an hour and a half away from the hospital, and I am doing this alone. That poor resident. I acted like a lunatic and even though I knew it at the time, I could not stop. I kept saying, “I know this is not your fault, but what is wrong with this place!” That would be followed by my next complaint.
The worst part of it was that Nico and I had an appointment that day in clinic at 9 a.m. for a special type of transfusion that is supposed to help with his ability to fight off infections. The infusion can cause serious allergic reactions, and because my boy is known to be super allergic, the infusion was supposed to take a good part of the day, and we had been up since 2 a.m.
I staggered to clinic at 9:15, carrying my weeping, feverish child still in his pajamas. I can only imagine what we looked like. Nico flipped out when they tried to take his blood pressure – think of a tantrum x 10,000. The woman taking his blood pressure decided that Nico needed some alone time, and a nurse walked us back to a private room. As soon as I was in the room, I just started to bawl. I have almost never done this in the hospital setting in front of personnel. I do not even remember what I blathered to the nurse.
A few minutes later a seasoned and confidant nurse practitioner walked in and immediately surmised that something was amiss. A few minutes after that our attending oncologist walked in and before I could speak said, “You have had an awful two weeks. And I am sorry.” Those words were magical! Then we just had a long, long talk and I got to oratorically mug him with all my fears and concerns. He was so validating. He promised me that it would get better. I am not sure that I have ever met a doctor with a better bedside manner. But more importantly, he explained Nico’s plan of care in a way that I both understood and felt I could trust him with my child’s health. Baby steps. Well, maybe a big giant step, but we still have to find away around the lab (and pharmacy, but that is another story).
We are adjusting and hope to be well adjusted soon. But it is not easy. During this long visit, my exhausted child watched old videos on my phone of the party his Aunt Casa threw at the beginning of treatment. The center of the videos contained a pink birthday cake painted in yellow and purple frosting. He requested that we make this again. We stopped on the way home and spent the late afternoon making a glorious boxed cake (there is such a thing). We will probably both pass out soon, but we managed to save the day. The picture on the post (and directly following it on warriornico.com) is Nico stirring cake batter after spending 12 hours in the hospital being kept awake with fevers, pokes, prods and a spent mother. Love this boy.