Mid November I was given news in which I had been waiting for over seven years. I was delighted to know that I had been given the go ahead to start a trial chemotherapy to treat LCH; aware of the side effects, this realisation didn’t put me off the treatment at all.
My hair falling out -it will grow back, nausea -gives me an excuse to stay in bed ;), tiredness -just means more sleep. The potential end result from this treatment would all be worth it; being that one step closer to normality as I remember it.
I will be treated with a low dose of chemotherapy which is used to treat leukemia patients. The chemo drug Cytarabine will be used for my treatment this time, because it enters the blood brain barrier, the one vital difference between this drug and the chemo drug which I was treated with at just three years old, as the drug Vinblastin does not cross the blood brain barrier.
There has however been a few delays since. I have recently discovered that the chemo has a very low, but still possible risk to my fertility. This discovery will not deter me from the treatment, but it has forced me to think carefully the decision I make. The treatment is also not guaranteed to creat a response. I don’t want to dive straight in knowing it may lead to complications later in life, and no positive impact. I have four paths in which my fate can go down.
One: I respond to the treatment, but lose my ability to have children
Two: I respond to the treatment, with no changes to my fertility
Three: I don’t respond to the treatment but my fertility is affected
Four: There is no change.
I have decided that I am going to freeze some eggs, just in case my fertility is affected. Knowing my luck, I wouldn’t be surprised if that happened. After all, I was unlucky enough to contract a rare disease, affecting one child in every 200,000. I was one of 24% of single system patients who developed long-term effects
The only downside to choosing this option is that my chemo treatment could be delayed by a few weeks.
No matter what decision I choose, I risk losing something.
No one knows how I will respond to the treatment, making me eager to get chemo started, and find out my fate.
If this treatment does nothing else but delay the degeneration, it will be seen as a success. I will be buying myself time for a hopeful cure in the future.
Wish me Luck!