Seven years, 2,556 days, 153,300 minutes, 4,599,000 seconds spent, living with this “devastating manifestation”; and I have finally been given a little glimmer of hope. I received news yesterday that moves me one step closer to potential treatment to prevent (and maybe regain) the neurodegeneration in my brain.
It started a few weeks ago, when I was contacted by a lady whose son was facing similar symptoms to mine with LCH.
*Back in 2006 myself and my parents were told by doctors that there was no cure, no treatment for the type of LCH disease I had. I was told that chemotherapy wouldn’t be an option, as there was no evidence (via MRI, X-Ray, fancy doctor methods) of invasion in my brain.* That was in 2006.
In September 2013 I was notified; not by any doctor, but by a fellow parent of a patient, that there may be a suitable treatment which has recently surfaced. Every person with this disease has different symptoms, making it x100, 000, 000 times harder and more unlikely for a treatment suitable to each person living with this disease to be developed.
As soon as I was told about this potential treatment I was straight on to email the doctors specialising in my case, who were based in the UK, about the latest developments; excited about maybe reviving the girl who died along with my walking abilities; but at the same time, pissed that I had to be contacting them about potential treatment which I have been waiting for news of, for almost SEVEN years.
After an antagonizing few weeks to hear whether or not I would be suitable for treatment, a lot of reminding and follow ups on my part. I have finally reached the stage of being recommended the treatment by the doctors in the UK, and going ahead with the treatment; providing I get the OK from my neurologist (brain doctor) in Dublin.
The form of treatment in which I hope to be getting will be a form of chemotherapy, which is given to patients with leukemia; but on a much milder dose so I won’t receive the side-effects to such a powerful degree, and; most importantly, I shouldn’t lose my hair.
However; the downsides: there is a possibility that the chemotherapy will have no affect. Because I have been suffering with this illness for 6+ years. The treatment works best for patients who are treated within a year of diagnosis. Why I wasn’t offered this treatment earlier I have no idea, but I’ll be pissed off to the max if I find out they knew about this treatment all this time.
As of recent (as in three or four years) MRI scans did show the disease had invaded my cerebellum, making me a possible candidate for chemotherapy.
I got terribly upset yesterday because of the statistics given that I may not respond to treatment because of my length of time with the disease. I have spent long enough feeling helpless when it comes to some activities, of feeling inadequate around ‘more able’ people. I never wanted this illness to take over my life. I don’t think anyone would, with any illness. I can’t be given news that there could possibly be a treatment that can restore my life; but then again, it may have no effect what so ever. I don’t want to have to wait, maybe another seven years fo a treatment that would be guaranteed to work. Thankfully my boyfriend was around yesterday, to comfort me from my doubts I was having.
I may have the attitude of: me me me, now now now. But after seven years of waiting for this moment, I think I can be forgiven. All I can do is hope for the best.