All apologies that I have not checked back in. I have been spending time with Bella, trying to support Kara in her school diligence, and dealing with the depressive change in seasons all at once. School is also demanding more than I can give at the moment and I am wrapped up in a legal battle that I have not said too much about until I win.
Bella seems to be back to almost normal save for the wicked back scar and the wincing in pain in the car whenever we go over a sizable bump. From the start of this whole ordeal I have never mentioned the “C” word as I tend to be highly superstitious. (My doctors call it “OCD”).
I read, Kara reads, and we still feel either the same or worse when we finish. The tumor or to be more specific the “Ependymoma” that Bella had was totally removed and we finally received the final grade, which was grade number 2. Now lets’s go over a list of a few things I find to be odd about this whole situation:
1. And foremost I believe that absolutely no five year old should have to go through any kind of shit like this.
2. Ependymoma is usually found in the brain, how it got that far down is a complete mystery, as it is usually found in adults in this location (90% of childhood ependymoma is in the brain).
3. The second tumor which had contrast and masqueraded itself during the MRI to be a replicate of the first just disappeared. The current theory is that this was just blood that was re-absorbed.
4. The chances of getting an Ependymoma would be about the same chance you would have of winning the lottery.
5. The Ependymoma always tend to come back, and when they do they tend to come back as the next worse level which makes them a “C” word, and I have concluded that this is why it’s so divided as to whether or not call it the “C” word initially.
6. Most of the research Kara, Myself, and the Neurosurgeon can find on this particular case is 15 to 20 years old only highlighting how rare this type of Ependymoma really is.
Now, we have an appointment with oncology on Oct.29th to discuss which direction we will take. No matter what happen,s life has been changed forever. The MRI machine will become a permanent fixutre in all of our lives and somehow focusing on health and having health has returned.
From my research, it’s likely that Bella will have to have radiation treatment. Now this is good news compared to contrasting radiation with chemo therapy. The thing about the Ependymoma monster is that they tend to return like a bad habit and the key to slaying this demon is small doses of radiation preventing their eventual return. Prognosis depends upon a variety of things including but not limited to location of the tumor and if and how much of it could be removed.
Bella’s location was optimal but there is still a chance it could have “dropped” cells which opened the doors for radiation treatment. We also spoke with the initial Neurologist who called to let us know her iron levels were low. Generally not a good thing, this laid to rest the daunting thought of neurofibromatosis which normally does not carry very positive prognosis rates (this would have been manifested with high iron levels).
I hope this update gives a bit more insight. I could go on and on about how bad this sucks and the other negatives results something like this produces in a family environment, but I wont. My goal is to have this documented to show Bella in 20-30 years how much of a scare we really did have with this.
Did anyone notice there is s new section on the mothersite? I was debating for awhile on putting up the OER but the arrival of Krark made the choice easy. Thanks for reading and the next update should contain all the Salamanders or a review of a prototype redler.
In conclusion I would like to thank everybody for their continued support, and apologize to those who haven’t thought I have been myself as of late…
Still BattleRexLess,
-Seth
P.S. The staples came out a week ago this Tuesday. As usual, Bella was a trooper and shed but a single tear. The scar on her back is healing nicely, there may not be any need for that tattoo we had previously discussed ;P Hopefully this whole event will fade as nicely and quickly as this scar has.
