I hope he knows how much we love him

For the past few days, I have talked at length with many specialists, including nephrology, oncology, neurology and palliative care. There is still no concrete explanation for Conley's presentation because it is not a clear this or that, like an infection or cancer diagnosis. All of the "yes or no" questions have not provided any more information about his long term prognosis. No information makes everything much more difficult to tolerate. 

As I mentioned before, Conley's MRI showed neurological abnormalities, such as lesions/damage, to the caudate and putamen, both parts of the basal ganglia. This part of the brain control voluntary and involuntary movement (such as Parkinson's Disease).

The most plausible explanation for everything going on and one that most specialists are in agreement with (despite no research ever showing such side effects or known connection) is that the chemotherapy caused neurotoxicity, leading the encephalopathy (brain disease that alters the brain function or structure). The chemotherapy medications that Conley was given had no known effects on the brain, but most patients that have been studied did not also have renal failure, so as always, Conley's situation is complex and unique.

Since Conley started chemotherapy, he has had a hard time during hemodialysis. He has been more uncomfortable, inconsolable and distraught. For weeks, we thought his medication (pain/sedative) was being removed too quickly by dialysis, and we would add extra doses of his medication, like Methadone, which did nothing. We were forced to watch him be "uncomfortable" for hours, not knowing how to console him. The rare twist is that he was not like this outside of hemodialysis, and he was more "normal" at home. This presentation was also occuring the Monday we were admitted to the ER. But, as I noted, this time Conley also stopped breathing appropriately. Conley has presented with similar symptoms this past week despite ongoing sedation and pain medication. Well, after extensive talks with many, many doctors, it has all started making sense. Unfortunately, I know Conley better than anyone. I see him every minute of every day and night, and a clear timeline of the progression of his illness is forever embedded in my mind and heart. I know him inside and out, and my instincts has always been right, despite even medical professionals doubting my thought process. I hate that I'm right because usually it's not a positive outcome.

It is turning out that Conley's presentation is a neurological issue (not pain or discomfort). Several weeks ago, Conley presented similarly, like I noted in previous blogs, and I worried something more was occuring. But then he got "better." Relatively speaking. He was better, but not his normal self. This time around, it appears that the neurological impairment is  causing involuntary movements, which cannot be controlled by sedation or pain medication. While it is comforting to know he may not be is distress, it is surely annoying and uncomfortable for him to be unable to control his body and limbs. The neurological damage sustained by chemotherapy appears to have been exasperated by hemodialysis to the point that it compromised the brains ability to communicate with his respiratory system, hence the quick decline in breathing. Cleaning the blood during dialysis seems to have limited the oxygen to the already damaged part of the brain causing it to be exasperated during hemodialysis, the only time he has been very "agiated." All this time we thought he was agitated, and it turns out he was just showing neurological signs of a movement disorder. People always said he was "agitated" or "irritable," but deep down I knew that wasn't right, and always wondered why it was so specific to that time period. That is not how Conley shows irritability. 

The movement disorder has not been officially diagnosed yet, but it's presentation is similar to chorea or ballism, which is caused in most cases by a decrease in activity of the basal ganglia (where putamen and caudate are located), resulting in the appearance of flailing, ballistic, undesired movements of the limbs. The only thing that has calmed his spasms is Thorazine, which is an anti-psychotic medication that blocks dopamine receptors. It is such a horrible feeling to have your one year old son taking anti-psychotic medication. He is either heavily sedated with Thorazine or he is flailing around uncontrollably. No one can tell me if this is temporary or permanent. I haven't even seen Conley open his eyes and look at me or recognize me since we were admitted.

These past few days have really made me question whether this is the life Conley wants, and it's pretty clear that it is not. What is unclear is that we do not know if the same thing will happen if he goes back on hemodialysis or receives further toxic intervention. We also do not know if time will heal him, but while we wait for answers moving forward, I have to remember that he is a person today.

Tomorrow we will meet with all of his specialists to have a care conference about his prognosis. This past week has been all about putting bandaids on symptoms and masking Conley's presentation, and it is too much. The bandaids eventually fall off and the medications don't work anymore. All of the intervention has started becoming more toxic and detrimental to his body than helpful, and I miss my son. I miss him terribly. Some people may wonder how I can make a decision not to pursue any intervention possible to "save" Conley, but what type of life would we be saving him for? They say "stay strong" or "keep fighting," or "he will pull through," but what are we fighting for? When you read through his life story these past few months, it's unbearable that any child should go through this. And it's not as simple as a one time or temporary illness or trauma, this is ongoing and continuous. This is his life, and this WILL happen again. But at what cost and how much more will he sacrifice? And what mother would continue putting her child through interventions that are likely to worsen a child's situation and deteriorate their body as a selfish act to keep them around. THIS is the internal battle I've dealt with for days; actually months. It was just masked by appointment after appointment; treatment after treatment; bandaids. Both choices are horrible and so overwhelmingly devastating for me. No matter what, I lose. So now the conversation is about what will help Conley win. As a friend said, "logically you know that this is not the life you want for him. And your heart is protecting and trying to say but no, keep fighting. Logic and your heart are battling."

This has been unbelievably emotional for me. I just want to know he will be okay; that he doesn't want to keep fighting. I know there are times I complained about having to take him to the doctor, bearing the burden of all his medical care, quitting my job, living at the hospital, not exercising, being away from the family and not having a "normal" family. But I hope he knows I'm not making any decision lightly, and I'm not having these thoughts because I'm tired of trying, or I'm in pain, or because I don't love him or care for him, or that I can't go on like this. I'm doing it because I do love him and I don't want to see him suffer or be just some experiment anymore. I want him to tell me I haven't failed as a mother or his caregiver, and that I tried my best given the circumstances. I just couldn't make it work for him. I haven't been able to make him healthy but what I can do is help him not suffer anymore.