We are emerging from what was one of the most difficult, and definitely the scariest, week of this journey so far. I didn’t quite understand how much I took my daughter’s health for granted, even as she pretty much (up until now) sailed through this chemotherapy process, until that relative state of health was demolished. With the high dose chemotherapy from this round, there was a higher risk of blood infection. Blood infections are one of the big, scary side effects or results of having your immune system wiped out by chemotherapy. Chloe came down with fevers last Saturday, so a blood culture was drawn (to see if her blood would grow bacteria). IV antibiotics were started, “just in case”, as is protocol with fevers when (white cell) counts are dropped. The medical staff expects the onset of fevers once the counts drop to zero, but they aren’t always due to septicemia (blood infection). The last two rounds, Chloe’s blood cultures were negative after her fevers. This round, they came back positive 14 hours after being drawn (the lab watches the cultures for 48 hours to look for bacterial growth, which is indicativ e of a blood infection). She lay in bed on Sunday and Monday, mostly sleeping through the whole day. She didn’t look so great. This was scary enough, and I was doing well to get through it one hour at a time. But the worst was yet to come.
Tuesday morning I came in (from McHouse) and the nurse told me that she had had “quite the eventful night”, as she had started having some major diarrhea, and her blood pressures were dropping and not maintaining at a safe level. The nurse dumps all of this information on me, very business like, and I am in a bit of shock. Chloe was awake, and no sooner than the nurse had stepped out the door, Chloe tells me that she’s seeing a “movie” on the back of the bathroom door. I ask, “What kind of movie?”, and she replies, “just a movie”. Then three seconds later she recoils on her bed in horror, yelling, “A spider!” and she is seeing a huge spider crawling across her bed. Let me tell you that this was absolutely the worst moment for me, having not had time to fully digest the information that she’s not doing well, and now she’s outright hallucinating. The hallucinations didn’t stop, and she continued to see a spider, which morphed into a centipede. I immediately hit the nurse call button (next time I know I can hit another button, which is for more urgent situations). After what seemed like an eternity, no one answered the page (I’m sure it was only a few seconds, meanwhile Chloe is aghast from seeing giant bugs crawling across her bed), I stuck my head out the door and luckily my nurse was right there, about to enter the room.
What ensued at this point is a bit of a blur. Lots of doctors and nurses, but in an orderly fashion. A Rapid Response Team (RRT) was paged to come up from the PICU (Pediatric ICU) to and assess her and determine if her condition was critical enough to warrant an ICU transfer. Everyone was very nice and calm and compassionate. Every person who spoke to me made sure I understood what was happening, and I could tell they deeply cared about not only Chloe but about how I was handling this. A few minutes later the RRT team came up, and as they assessed her she was getting a major amount of IV fluids (a bolus, they call it) to try and stabilize blood pressure. They determined that at this point she wasn’t quite an ICU candidate. They would return in a couple of hours to check on her again.
During the RRT assessment, the oncologist said to me, that if she does have to go down to the PICU, that she would be “one of the better-looking kids down there” (I’m sure he was trying to make me feel better). I immediately responded with, “I don’t want to see the other kids there!”, knowing full well that seeing such sick children while in this vulnerable state would have added another layer of trauma to my experience. While the docs were concerned about her hallucinations, they were more focused on the fact that she knew who she was, who I was, and where she was. She was able to sensibly answer all the questions concerning her orientation to place and time, all the while pointing out the sprinkler system coming out of the bathroom door handle (“like the kind that spray the vegetables at City Market,” she told us).
The doctors have seen worse, as far as orientation status, they told me. According to them she was lucid and stable enough mentally so as not to overly alarm them. I think I remember at one point that morning the oncologist looking at me and actually saying, “I’m not panicking”. Good thing he wasn’t! I can’t say the same for myself. Chloe looked horrible. Her color (in her face and whole body), the way her beingness was occupying the volume of her body, the visual tone of her tissues….. it was all very, very indescribably off. It is almost impossible, as a parent, to look at your child and see them in this state and fully absorb and process it. It evokes a feeling void of words, and beyond sensory comprehension.
Her blood pressure responded well to the fluids. They also transfused blood and platelets during the day (which is common for kids post-chemo), and that helped a lot, too. She remained under very close scrutiny by the doctors, our NP (nurse practitioner) and the nurses for the entire day. The doctors (the oncologist and fellow) came in about once per hour to listen to her heart, lungs, etc, and to make sure she was still oriented to person, place, and time. She remained stable, however the doctors were still very concerned. She also was diagnosed with a bacterial infection in her bowel (Clostridium difficile, or C. diff, is the name of the organism), which really complicated matters. They started her on a different antibiotic for that. The docs attributed her falling BP to serious dehydration from the vomiting (oh yeah, I forgot about that: sepsis makes you very, very nauseous) and the diarrhea. And there may have been a complication thrown in there by the Benadryl she had been on (to prevent a reaction she had had to one of the antibiotics), in combination with the dehydration. But in general, sepsis makes your blood vessels and tissues leaky, and so there isn’t enough fluid in the lumens of the vessels to keep the pressure up. In the matter of a few hours, she received 3 one-liter sized boluses of fluid, in the time span of about 15 minutes for each bolus. That, combined with the blood, was enough for her body to work better. If she would have transferred to the PICU, it would have been to give her some vasopressors, which are medications to bring the BP back up. As it is, her tissues really held onto the fluids. She looked incredibly puffy, in a very artificial way, literally from head to toe. (In the past couple of days, as she has healed from the sepsis, she has started to lose the tissue fluids).
So that was the worst of it. Since then we’ve been dealing with bizarre, complicated symptoms and incremental improvements, up until yesterday evening when she finally turned a corner for the better. She sat up in bed and started singing and talking nonstop; it was the moment I had been waiting, hoping, and watching for since this whole ordeal started. I wanted my kid back!! Today is her best day yet. She finally got out of bed and went to sit on the couch across the room. She still looks odd to me, with some remaining fluid retention, and a lot fewer eyelashes and eyebrow hairs than she had even a week ago. And, despite the fact that her ANC and other counts are on the rise, her color looks off, as if she is void of something.
Our assigned oncologist, who we see about once a week (but for up to an hour at at time) stopped by yesterday afternoon and told me that her type of sepsis, the bacteria that caused it, is pretty much the worst one you can get. And that over half the kids with this type of bacterial blood infection end up in the ICU. And she confirmed that yes- kids with this sickness look awful. She was incredibly compassionate, and the look in her eyes was intensified to me (I will never forget the pain in her eyes, during our sustained eye contact, as she held compassion for my suffering). Because her eyes were all I could see of her face, because anyone entering the room also needs to wear a gown and mask, in order to avoid spreading Chloe’s germs to other patients. Did I mention that Chloe also has a cold virus going on with all of the rest of this???
Her doctor thinks she’ll go home in a few days. She needs to be afebrile (without fevers) for 24 hours, and needs to be without abdominal pain, and she needs to be eating a normal diet. She’s currently on clear liquids. She has been getting most of her nutrition through IV. So far we haven’t passed any of these parameters (except maybe the abdominal pain… that has mostly resolved).
I will say that, after experiencing the borderline ICU day, I did get some major perspective on the doctors’ use of their time. The reason why some days I don’t see the doctors (I happen to miss them when they come by for about 5 minutes, and the time of day they visit is completely unpredictable) is because they are focusing 90% of their time, energy, and attention on the kids who are sick, on the kids who really need to be seen more urgently. I get it now! This also explains why some days they come by at 9:30 am, and other days they don’t round to patient rooms until 4:30pm. There are sick kids to see, and it varies from day to day. And, their schedule can change in an instant (as it did on the day they were tending to us so vigilantly). And boy was I glad for their availability while she was critically sick. Two days ago I didn’t see them until 4:30pm; I took this to be a very good sign!
I did receive an unexpected phone call on Wednesday: we were being offered a 2-bedroom apartment at Brent’s Place. Brent’s Place is a clean and safe apartment community near the hospital that serves families of immune-compromised pediatric cancer patients who have long-term needs to be here, away from home. (Have I mentioned that we are 350 miles from home?) We had been on their waiting list since Chloe’s diagnosis. The furnished apartment is ours through the remainder of her treatment. Brent’s Place is more than a home, it is a container. It holds families with love and support as they endure the very difficult process of cancer treatment for their child. I moved in on Thursday, added a few personal touches (many homey furnishings, such as rugs, plants, flowers, or pets- even fish- are not allowed), and am happily calling this place home. Even though I haven’t met any of the other families yet, I feel that I have found my “place” in this process, just knowing that I am surrounded by families in almost identical circumstances to ours. Chloe is very excited to see the apartment so I told her once she’s discharged, we’d spend a couple of days here before we go home.
I won’t elaborate on my mental state, and how it’s been throughout this past week, as that would be a whole different, possibly very long, journal entry. But I’m doing okay. I, too, will heal from this. I have a lot of support, including incredible friends who encourage me be honest with them about my process and feelings, and I can have alcohol at Brent’s Place!!! (RMD house has a strict no-tolerance policy against it). I’m not a huge drinker, but just having the choice to have a drink feels uplifting. Today I bought a bottle of Dreaming Tree wine, cultivated in Sonoma, California in partnership with Dave Matthews, (one of my musical idols), that I shall open tonight. Brent’s place is giving me some privacy and freedom of choice that I have long been craving.