Monday, May 19, 2014

It HAS been a long time, hasn't it? - Leslie

Hey everyone!

I know we haven't been the best at keeping up with the blog as of late, but we are hoping to change that.  I have been gone longer than some of the others due to health reasons.  I will get into that, but first I want to explain the purpose of the blog and then introduce myself again for anyone who may be new.

My name is Leslie and I will be contributing (mostly) weekly to the blog.  I used to write every Saturday, but now you will see me on Mondays.  Our topics will include everything from books, to parenting, to personal issues and current events.  We choose a new topic every week and on their day, each contributor will then write a post on the topic as they see fit.  We believe it is a great way to get different viewpoints on many subjects.  We always consider suggestions for weekly topics, so don't hesitate to send us your ideas!

As I said, my name is Leslie.  I am a 26 year old mom from Indiana and I am engaged to graphic artist.  Don't get any ideas!  My art is terrible.  My daughter is 3 years old but I am convinced she is going to turn 30 before I do.  She's growing so fast!

I love to read.  In fact, that is usually what you'll find me doing if I have any free time.  I also like to write, but I wish I were better at it.  It would be great to be able to write like one of the many great authors I have read.  Unfortunately lately I haven't been able to do much more than that due to health issues.

That takes me into where I have been for the past year or so.  It might be a bit long-winded, so I apologize in advance.  I also plan to shorten this version tremendously, which unfortunately means I will leave out a lot of details.  If you are interested in that, let me know. 

Last June I went with my fiance and daughter to Pennsylvania to visit my fiance's family.  Being the bed he grew up with, it was smaller and softer than I was used to.  One night I slept funny and woke up with the worst pain in my neck.  Of course I attributed it to the bed, and got through the rest of the week okay.  When we got home, I was still having problems with it.  In fact, it was getting worse.  After waking up several nights with severe pain moving across my back (sitting on the couch is the only thing that helped it, for some reason), I went to the emergency room.  They didn't really examine me at all and sent me home telling me it was just because I slept funny and probably had a muscle spasm.  Another late night trip to the ER a couple of days later and they still said the same thing.  Finally I got into my family doctor who ordered x-rays.  On them, he could see spasms in my back, but he also said he saw a cyst inside my spinal cord for which he referred me to a neurosurgeon.  Long story short, through MRI tests, the neurosurgeon found two brain tumors and a small tumor inside my spinal cord.  The tumors were causing fluid to build up around them which was what my family doctor saw on the x-ray.  He said the cyst around the tumor in my spine was what was causing my pain.  In September, due to it's larger size, the neurosurgeon decided first to remove the tumor on my brain stem.  The surgery went well, but a couple of weeks later I started to get horrible headaches.  It turns out I had developed hydrocephalus.  In October, I had another surgery where a shunt was placed to relieve the pressure from the fluid build up on my brain.  Unfortunately the tube that connected the shunt itself to my abdomen pulled out of where it was supposed to be and the doctor had to go back in and fix it.  That was surgery 3. 

I got a bit of a reprieve from surgeries for the rest of 2013.  I was referred to an oncologist after the first surgery just because we were dealing with tumors.  The tumor itself turned out to be one called a hemangioblastoma.  That means the tumor was a very bloody one, but wasn't cancerous. 

At this point the neurosurgeon and the oncologist suspected that I had a disease called Von Hippel-Lindau disease.  That is where tumors form throughout the brain, spinal cord, and sometimes on the kidneys and pancreas.  I still haven't been able to get the test to confirm it 100%, but every doctor I have come into contact with is pretty much convinced that is what it is.

The neurosurgeon ordered more MRIs to check my thoracic spine for tumors.  Fortunately, the rest of my spine is clear.  However, they did find tumors on my kidneys and possibly cysts on my pancreas.  I was referred to a urologist who did a biopsy in December on the largest tumor on my left kidney.  That did turn out to be cancerous, though I couldn't give exact details about it.  The urologist turned out to be a little... eh?  He said it could wait a little while and he didn't seem concerned, but I also didn't much like his bedside manner.  My neurosurgeon (who I LOVE) referred me to another urologist who I am seeing now.  I recently had more tests to check my kidney function and another MRI to check sizes of tumors and things like that, but I haven't heard from the urologist's office for another appointment to talk results and surgeries so when I get that information, I will pass that along.

In March, I had another surgery to remove the second tumor from my brain.  He removed a portion of my skull to get to it and that is still off, so that freaks me out a bit.  Other than that, it was also a hemangioblastoma, so not cancerous, and recovery has been really great.  It seems to baffle the doctor how well my recovery goes, especially from brain surgery.  At this point I am just waiting to hear back from the urologist to see what happens next.  I know that for the cancer, radiation and chemotherapy won't have an effect.  They said it won't help at all.  The only option is surgery.  When I find out more, I will give another update. 

So, that is me and what has been going on.  I hope I didn't ramble or stray too much.  That's hard when you have a whole family of people who are distracting!  I will be back next Monday with a new topic.  Hope to see you there!

Again, if you have any topic suggestions, e-mail them to or leave them in a comment!

1 comment:

  1. Your daughter is beautiful! So sorry to hear about your health issues! That has to be scary :/ I will be praying for you!