We met with out oncology team yesterday afternoon and the MRI did not show anything good. There are significant changes noted so it has been determined that Braydens relationship with oral Temodar is over. We started our oncology journey in March of 2013, and in the last thirty months Brayden has tried the following protocols:
Carboplatin/Vincristine (allergic reaction to Carboplatin)
Vinblastine (didn't work)
Avastin/Irineotecan (didn't work)
Temozolomide (didn't work)
Keep in mind that each of these protocols are supposed to last for a year if the child sees a response or stability so it is pretty astonishing that we have already been through all of these. That being said, today marks the preparation to start a new protocol, and to be honest I didn't even know this one existed. It was not offered to us three months ago because we had just had Brayden's sister and our team though it might be too much to handle (and they may have been right). It is called TPCV and our team has only used it in a few children at CMH. My family has asked several times if it worked in those children but I didn't ask and to be honest I don't want to know. This protocol is a combination of 3 drugs (Procarbazine, Lomustine, Thioganine) that will need to go down his NG tube and one IV medication (Vincristine) that we have taken before. A combination of those oral drugs will be administered every 6 hours (6AM, Noon, 6PM, and mindnight) down his NG tube on days 1-4. He will need a nausea medication one hour before the medication on day 3 (5AM, 11AM, 5PM, and 11PM). Then on days 14, and 28 he will to clinic to receive the IV Vincristine. The cycle length will be 42 days long and it will likely take his counts that long to recover. I do not know yet what the schedule will be for checking his labs. As for the side effects, the team suggests by day 3 he will be pretty nauseous but hopefully our cocktail of nausea medications will combat this. As for all chemo, he will be at an increased risk of infection as his counts drop, and one of the drugs tends to affect platelets pretty significantly so his bleeding times may be affected. When he took the vincristine before he was too little to tell us much but he was pretty fussy so I wonder if he will have the nerve pain that is associated with this drug. Another risk that was discussed is that all of the drugs Brayden has been exposed to is likely increasing his risk of contracting a secondary cancer. In my mind this sounds scarier than it actually is because the other choice is to do nothing. Don't get me wrong, I have thought about withdrawing treatment, and that is a decision that we will be forced to make someday, but as long as the treatments don't affect Brayden's quality of life than I see no reason to stop. Currently our NP is attempting to locate these medications and get a timeline for obtaining them as they will likely have to be orders so I don't have a start date yet. He will have another MRI in two cycles (3 months) to see if he the tumor is responding or not.
Overall the discussion with our team yesterday was tough. I was fairly prepared for it though, because I keep finding myself thinking "Nothing has worked yet, so why would this particular one work". I know that thought is beyond pessimistic but I think it's one of my coping mechanisms. I have lived my life always thinking:
During our chat yesterday we discussed radiation therapy and Dr G shared that he didn't think it was a good plan. I was relieved to hear him say that because I would never even consider doing that to Brayden. Due to the tumor size, location in the midbrain, and Braydens young age, the effects of radiation would likely be catastrophic. He would likely only be a shell of the happy and sweet little boy he is today. I guess maybe he would "survive" but that isn't how I am measuring success. I wouldn't do that to myself and I won't do it to him so I am relieved that our team feels the same way. After that we discussed that this protocol is likely the last option without going down the experimental drug avenue and I am not sure if we will choose to do that or not. It will depend on the location of the trial, the phase of the trial, and how Brayden looks clinically when we get to that point. There is currently a trial here at CMH but Brayden can't do it because it requires him to be able to swallow a capsule for 21 days consecutively. They are discussing opening the trial to liquid administration but that hasn't happened yet. This may be our next avenue if they open it to liquid administration but it would require Brayden to have a feeding tube placed surgically. It would look something like one of these with the pink line being his stomach wall, meaning the balloon would be inside his stomach to hold it in place and the cap would outside his skin.
The advantage to this vs a traditional tube is that kiddos are allowed to submerge it in clean water so he could still take baths and go to the water park. I hate to put him through that and to be quite honest I don't know if I could actually do that to him, but I guess time will tell. In the interim we will continue pushing forward as we always do. We will try the TPCV and continue to make each day about letting Brayden do as many fun things as possible in his short life while we keep showing and telling him how much we love him. I meant what I wrote on my last blog; every day we get to spend with our sweet boy truly is a remarkable gift. He is happy and so full of life so I will choose to follow in his footsteps.
I have had an overwhelming number of people reach out to us after yesterdays news and I want to thank everyone for supporting us as we continue this journey. I am sure at some point we will need help, but for now we are doing okay. Brayden has many kind people in his life and for that we are so grateful. We couldn't do this without the support we receive from the people around him. A special thank you to his sweet teacher and her coworkers at the ECC as well as to the kind staff at the clinic who have taken a real interest in Brayden and always welcome him back to the clinic and do their very best to make it fun for him. Another big thank you also goes to everyone who has helped along the way with our sweet Adrianna so we can give Brayden our full attention when necessary. She is turning into quite the social little thing making her way around. As always thank you so much for reading about, thinking about, and praying for our sweet boy!