Tuesday, March 8, 2016

Do I tell him?

We had our appointment this morning regarding our options about how to best proceed with treatment for Brayden, and as usual, it's a real tear jerker. We were presented with four options:
Option 1: Medicate Brayden with 4 different oral medications that there is "some science" behind after studying the biochemical make-up of the tissue sample. He will have to swallow them willingly, and 2 of them are twice a day. (It might make his skin fall off and make him sleep a lot).
Option 2: Set him up for radiation. Radiation will require Brayden to have general anesthesia Monday-Friday for 6 weeks. (The effects on our sweet boy might be catastrophic).
Option 3: Dose with him very strong chemotherapy agents IV that will require him to be hospitalized for weekish long stretches (they will likely make him very sick).
Option 4: Do nothing
I honestly think all of these options stink, but we have to pick something. My mom asked the dreaded "how long do we have" question, and the response of "6-9 months" took my breath away. I can't imagine how a little boy who looks so good and is still learning new things can be predicted to only live such a short time longer, but I am no oncologist and so far Dr G has not guided us down any wrong paths. When I asked him what he would do if Brayden was his little boy he said "It would be a tough decision". Knowing that he wouldn't completely rule out radiation for his own child, I have agreed to meet with the radiation department at children's for some fact finding. I imagine they won't change my outlook, but we will see. The nearest proton radiation center is in St. Louis and based on my own research, that seems like the best kind of radiation.
In the meantime, I have no interest in torturing Brayden with hospital admissions and making him too sick to enjoy life for a series of IV medications that will only buy us a short amount of time, so I marked option #3 off the list. I considered option #4 of doing nothing for quite some time, but what if the oral combo of medications works and it doesn't affect his quality of life? So, I landed on option #1. We will start these medications and meet with radiation oncology at some point to see if that's an avenue we want to further explore. This combination of medications has a huge potential for some life altering side effects, so we will stop/alter the trial at any signs of those. Two of the medications have small risk for something called "Stevens Johnson syndrome" which is a serious disorder where the skin basically falls off the body. The small risk will be slightly increased because two of the medications list it as a potential side effect. This means we will need to assess Brayden's skin meticulously each day and stop the medications at any sign of skin changes. Two of the medications are being used off label and are normally prescribed for seizures. They both have sedating effects and can also affect the way a healthy heart conducts electricity (For my nurse friends, it can prolong his QTC). This means he will no longer be allowed Zofran for nausea, but also no Phenergan because it can be sedating. Pain management may also be an issue since he can't chase these sedating meds with oxycodone so I am not sure about the logistics of it all. He will have an echo and an ECG next week before beginning any medications. We are still trying to get these meds covered through insurance because one of them is like six thousand dollars...... Let's also keep in mind he will need to swallow these medications.  They say they don't taste bad and that we can hide them but I am not sure. Ethically it is really wrong to surgically place a tube in his belly for only medicine, so if he won't swallow the meds than this treatment will be off the table. The medication doses/frequency can be adjusted based on his symptoms/quality of life. This is what I think matters most because I would rather keep him for 6 good months and say goodbye to Brayden as we know him now versus watching him suffer for a year.  
So the real question is this: How much do you tell a happy four year old about brain cancer and what his future holds? How do you even go about preparing such a sweet and innocent soul for what is going to happen to him? I have never really thought about sharing more than I need to with him about his diagnosis, but it looks like it may be time to start talking about it??? How do you prepare the little people in his life to lose him? Most importantly, how do I prepare myself for all of this?? I don't know if I have a brave enough face for all of this........


  1. I know next to nothing about dealing with cancer and its treatments but when i read this i had seen how his combo of drugs requires gim to stop taking anti nausea and pain medicines and that his meds could cause both nausea and pain....have u considered THC drops to help with these side effects for your son is that is the case??? I hope that your son beats his cancer and lives an amazingly long and fulfilling life with his family by his side...wishing you the best :(

  2. terrible disease! I understand you, because that too is happening among my friends. but no one understand when a child

  3. I really hope the you are fine! I wish you to be healthy!!! Get well soon!