It feels like all we do is post bad news on this site anymore. I really can’t remember the last time Emma went into an MRI machine that didn’t end in bad news. Today’s scan revealed exactly what we were hoping wouldn’t be the case, the tumor has grown. The good news is that the doctors referred to the growth as only a little but definitely noticeable growth. The doctors were all pleased with her continued growth.
The worst part about this didn’t come from Dr. Goumnerova’s news of the growth. The worst part came when Dr. Chi shared with us that Emma is no longer a candidate for the MEK inhibitor trial out in L.A. It was 3 short months ago that the second phase of the trial wasn’t even open and now it is closed to children with tumors that originate in the optic nerve region. How does this even happen? We understand that this drug very well may have not worked anyway, but to know that it is no longer an option is quite possibly one of the more frustrating thing we have experienced in a while. One of the worst parts of this is that about two weeks ago a family in a Facebook group was looking for advice and we advised them about the L.A. trial and they were allowed into the trial. It is just so frustrating to know if we had scanned two weeks ago, Emma could have been part of the trial. Now who knows what will be next for her?
As we sit in this hotel room it is impossible to understand the medical world and how it works. As we were discussing this with Dr. Chi she said that there is a chance that this drug may never even reach the FDA approval process. The reason will shock many of you. The medical company will obviously have a lot of things to look at when it decides whether to offer the drug or not. The number one reason is its MARKETABILITY, yes you read that correctly. It has almost nothing to do with how well it worked on those kids that got to use it, one of which is not Emma.
I don’t know about anyone else but as a marketing teacher it absolutely makes me sick to think that the medical world operates in the same way that clothing and food does. How will this drug sell, will people be scared of the side effects, does it help with the big diseases?? Basically we were told that our daughters disease and life doesn’t matter as much to the drug companies as someone with breast cancer and prostate cancer. Why because they can’t make as much money. Dr. Chi said the best chance for that drug getting approved is for it to also be deemed effective for a major cancer like breast cancer or prostate cancer, because it would then make more money for the drug company. So not only does the majority of the federal funding go to those diseases but our kids only get the medicines that happen to help in both areas. They don’t really care if it only helps us. Pediatric diseases aren’t a big enough problem and the only way to solve this is for more kids to get sick or for those of us battling it to be loud and effective enough.
So where does this leave us? The answer sadly enough is we don’t know. Dr. Chi provided us with five options of drugs to consider with each and every one of them having some major side effect or another. Another problem with starting a new drug is that if we start they will need us to give it at least three months and in that time a different trial, that is in the works, in L.A. may have started and closed in that time since it is a phase one trial and will have limited spots open. If we sit and wait the tumor may grow so much that we could face another tumor resection or worse yet lose our daughter. How do you even go about making these kinds of decisions?
I would be lying if I didn’t tell everyone that I am extremely angry about the developments today. How do we have a medical world that doesn’t produce medicine that could save lives, just because it doesn’t serve enough people. From my point of view losing one child is one to many let alone an entire disease population. To think about the amount of wasted federal dollars that are spent each and every day only adds to the frustration.
Side Note: Just in case today wasn’t quite bad enough the wait for a cab was an hour and a half so Kathryn, Emma and I walked the 2 miles back to the hotel today. My shoes are soaked and man is that a lot of snow.
I wish that I had better news to share with everyone but please say some prayers tonight for both my family and the doctors that will be meeting over the next couple days to discuss our next path.
We are feeling a little down tonight, and it is so hard to try and make sense of all of this. Hopefully tomorrow will bring a bit better outlook for us. We thank each and everyone of you who prayed for Emma today and those of you who sent messages to us. This means more to us than you know!