So many unknowns

As you know, Conley started Cycle 2 of chemotherapy at the end of last week. We knew that this would be a difficult weekend, but had hoped for some sort of comfort given that we were able to eliminate other factors (such as withdrawal) heading into the cycle. Overall, Conley had a pretty good weekend despite vomiting most of the time. Come to find out that someone dropped the ball and we were not prescribed a medication that significantly reduces nausea and vomiting. As a mother, it just breaks your heart to know there was some way to prevent such suffering for your child. But, as I've learned, Conley's case is extremely rare and these things happen. You learn that there is only so much you can remember and coordinate, and it is much harder when you do not know something is missing until after the fact. Even with that said, there are many things out of our control in this situation, but the things you can control and somehow are missed, makes it that much harder to tolerate.

Despite Conley's vomiting, we had a pretty good weekend. Sunday was an especially nice day as the entire family, plus Nana, spent most of the day walking outside and enjoying our new neighborhood. Choice and Conley thoroughly enjoyed holding hands and walking around together wearing matching beanies since we recently shaved Conley's head. His hair had started falling out in chunks so we felt the time had come.

On Sunday night, I started noticing that Conley was more constipated, a common side effect of chemotherapy, so I called the doctor and they prescribed a stool softener. We gave it to Conley and within hours, he threw up that medication as well. This time, his vomit was bright yellow, and later on had turned dark brown. I went back and forth about whether I should call the doctor or not, but realized that his vomit is not usually colored since he does not eat any real food. So I called, and they told us to come to the ER to rule out any bowel obstruction. Good news is the xray ruled out an obstruction and Conley pooped while in the ER. Yay. However, during our monitoring, he destated, meaning his oxygen flow dropped significantly. Conley has no permanent lung issues, so this was uncommon and scary. The doctors could not explain why that happened, but instead, gave me the option of staying the night or going home since we already had a scheduled follow-up on Monday morning. I chose to stay the night (I never thought I'd choose that), because I was concerned and also it was already 11pm. Conley did fine the entire night and his oxygen level remained perfect so we were discharged on Monday morning. We spent the day at multiple follow-up appointments including Endocrinology, Oncology, and then straight to Nephrology for his regular hemodialysis appointment.

During hemodialysis, Conley had his typical presentation post chemotherapy, including restlessness and discomfort. We were able to hold him and comfort him intermittently. He was also given some Benadryl to help with vomiting and relaxation. We were about 30 minutes from finishing when Conley destated again. This time, it lasted much longer and he was only taking about 6 breaths a minute (should be at least 15 per minute). Given that he was not recovering on his own with oxygen flow at the clinic, the nurses called 911 to get an ambulance to transported Conley to the hospital. Let me remind you that the clinic is right across the street from the hospital. This means they were that concerned with walking Conley across the street in that five minute period that they called an ambulance to come transport him. I have to admit I did not really understand what was going on and did not process how real this all was until at least 24 hours later. While in the ER, Conley had multiple similar episodes of destating, so he was admitted to the ICU. Conley did an xray in the ER, and another once he got to the ICU hours later, and within that short time, his lungs had completely filled with fluid. He was intubated and sedated heavily, right back to where we were just a month ago. They suctioned out his lungs and there was lots of bright yellow mucus (similar to what he vomited all day on Sunday).

So far, there is no explanation as to why this is happening. Initial thoughts were infection but all tests for RSV and viral infections have come back negative. We are still waiting on the pneumonia tests. All cultures for bacterial infections are still negative. Despite all the negative results, they have started Conley on a range of antibiotics just in case there is an infection that has not been detected. They have also done tests to rule out any heart and brain issues, including seizures, which were normal/negative. He will next be receiving an MRI of his brain to rule out tumors or cancer in his brain. Apparently, it is possible that hepatoblastoma can spread to the brain and one of his blood results that tests as a tumor marker has been elevated since previous weeks. He was also set up to do an EEG to monitor brain waves. It has shown delayed responding, which is of concern, but unclear if it is temporary due to peripheral factors, such a chemo, or a more long term effect such a neurotoxicity. (Neurotoxicity occurs when exposure to natural or artificial toxic substances, like chemo or other medications, alters the normal activity of the nervous system in such a way as to cause damage to nervous tissue.) We all know that Conley presented with many scary neurological symptoms after his first cycle as well, so this creates additional concern for this time around. There has been talk about "too much chemo" since Conley has poor renal function, but this has not been clarified yet. So, back to unknowns. And waiting. And suffering.

Every time this happens you feel like you will prepared for next time, because there will always be a next time. But I wasn't. I spent Sunday night in the ER to be discharged to 3 doctors appointments, just to come back to the ER and stay the night in ICU. Conley was intubated in front of me. I usually don't watch, but there was no time to tell me to leave. And now his lungs and brain may be compromised. The two organs I felt we could lean on. The hardest part is that I knew I had to go home to sleep and shower last night, but I couldn't stand the thought of leaving him alone. It is an awful place for a parent to be at any moment, and it is a regular battle for me. I made the decision to leave and I cried the entire way home feeling so guilty. Not just cried, I sobbed. Yes, all normal feelings I know, but it does not make it any easier. Jonathan and I took Choice to music class together and then went out to dinner. For a moment, we were all happy again. I spent the night cuddling with Choice and Jonathan during a crazy thunderstorm. And then I drove back to the hospital this morning and cried the entire time. I can't believe it's only been 48 hours. To be honest, I am a mess. It never gets easier.