Friday, May 8, 2009

Another Christi Update

For those of you who are keeping up with and praying for my cousin in law, Christi, here is her latest update! Family: I'll keep posting them as she writes them! Love you guys!

Wow... what a month this has been. Brief recap:

On April 5th we discovered a grapefruit sized tumor in my frontal lobe and had an emergency surgery to reduce my brain pressure caused by the tumor/blocked ventricles. On April 20th I had brain surgery to remove the tumor. Most of it come out but the Dr. was not pleased with how much was missed. That said, there were good reasons for him to be cautious so we weren't upset. It wouldn't have been a big issue except on April 23rd we found out that my tumor is cancerous... (If you haven't heard any of this go back a few notes and I wrote all about it.)

So that brings me to today. This week has been a crazy ride. We met with my oncologist, neurosurgeon, and radiologist. We had a ton of questions and got a ton of answers and then some. Right now the plan is pretty exciting. We're going to most likely do a second surgery to get more of the tumor (more to come on that), then we have a month or so to heal followed by 6 weeks of radiation and chemo combined. After that we will have a month off to be followed by 6 months of chemo.

The radiation will most likely NOT make me lose my hair... it will a little, but most likely not all over (yay!) ANNND the chemo is a new kind that is basically 3 chemos in one with more benefits than just getting those 3 chemos... if that makes sense. I'm especially excited about it because it is a pill. MUCH MUCH easier to handle than hours of sitting in a room with an IV with a bunch of other cancer patients. That would certainly ware on me emotionally (I saw the room and it was... well... depressing). The chemo ALSO will not make me lose my hair which is awesome. I'm still mentally preparing myself for hair loss just in case, but there are good odds for my locks and that makes me smile.

So back to the second surgery. When we met with Dr. Gore (my neurosurgeon) he said he definitely wanted to do a second surgery. Unfortunately the tumor is so close to my speech and language facilities that he would only be able to get 95%. I asked him if his previous experience with me would be a huge benefit or if the iMRI (an MRI that allows the surgeon to see everything WHILE performing the surgery) would be of more benefit. Gore told us that the iMRI would far outweigh his experience. It was that statement that sealed the deal in my and Adam's minds. We were going to try to get into MD Anderson for their iMRI and world renowned surgeons. We LOVE Dr. Gore and he will remain our primary neuro doctor, but this surgery is very important and very risky so we want the best of the best. The more tumor they can get the better my chances.

And that's when doors started opening. My dad called his friend who just happens to go to the same synagogue as a man named Levin. Levin is the head (?) of pediatric oncology at Texas Childrens. Dr. Levin said he would be happy to help and has hand picked TWO potential neurosurgeons at MD Anderson for me - both trained and proficient at using the iMRI. Not only did he pick these guys but he has also let the Dr.s know that I am a high priority case and need to be at the top of the lists so there's no wait. PRAISE THE LORD!!

We're waiting on a call from MDA on what to do next... right now they have contacted us several times to get a health history, tell us what's going on.... etc. The ball is rolling!! If Gore had done the surgery he wanted to do it within the next 10 days or so. Based on that I am guessing we will be in Houston sometime early next week. Pray that things happen!!

Now, I DO need to warn everyone that this is such a weird situation and while I LOVE you guys, I really really do, I most likely will not be able to see friends while I am in town. Brain surgery for the tumor #1 had a long healing process... I wasn't pretty, had a black eye... had to cover my head as there were staples and all kinds of things that normal people just don't need to see or know about. That said, I plan on fighting this and WILL be around for a long while so there WILL be time to enjoy our friendship and hang out!! I PROMISE :).

Now back to my report :). To top everything off I have also gotten the name of the top neuro-oncologist at MDA from two separate sweet friends and we are hoping to see him as well while in town. (Again, God is good!) One of those friends also has a family connection to the hospital and has been very helpful in this whole process!!

We have a ton of really positive stuff going on!!

Now to the bad news... I've purposely not said what kind of tumor I have... our family just doesn't need well-intending people to offer advice or research and worry. That said, I will share one piece of information about my tumor that rather shocked me. The AVERAGE person with my tumor... statistically speaking... only lives 3-5 years AFTER treatment. 3-5 years. WOW. I definitely cried once I was home and had time to process that - not because I am scared!! But because that is a BIG PILL to swallow. AND it is amazing to me to see how God will bring me through this. Hear me loud and clear here - EVEN IF I AM THE STATISTIC... EVEN IF I ONLY HAVE 3-5 YEARS I will praise the Lord through all of this!! I can SEE the why. I know why. This happens a.) because we live in a fallen world and sickness happens but more so I believe that this is happening b.) so God can do something amazing either by healing me or by touching some of you and letting you know that even in the darkness GOD IS THERE and at the end of the day HE is still in control!!

I'm excited to see what God will do and has already done!! And that said, these statistics are years old. Research data just can't keep up with technology. There is newer and better medications now, the iMRI will help get more of the tumor out, I am young and that helps, and I am so positive about this... feisty even. I want to kick that cancer in the face and I'm looking forward to doing it!! The statistic also takes into consideration that most people with brain tumors and cancer are much much older, might be out of shape, might not be healthy. I have not smoked a day in my life, I ran every weekday for the past 6 months before this, I recently lost 20 pounds by eating super healthy on weight watchers.... God has brought me to this time and place for a reason. If anyone is ready and equip to fight this it is me!! That is not a prideful statement but a hopeful one!! I only shared this statistic because I want all my friends to know that our god is BIG and our God is POWERFUL and our God is NOT a God bound by statistics!! If He chooses to bring me home then I know where I am going, but that said I have SUCH a PEACE about this whole thing. Praise the Lord!! He is Good ALL THE TIME. And between you and me, I plan on being around for a WHOLE LOT LONGER than 3-5 years!! I promised all of you some good hang-out time, remember ;) And I always try and keep my promises!!

I'm EXCITED about what God is doing. Keep praying!! He's listening!! Even if you don't normally pray, I would appreciate all I can get.

Love you my dear friends and family!! I am a very blessed person. You have no idea how lucky I feel to have all of you routing for me. God is good. Just remember that!!

2 comments:

Sarah said...

Hi, I have just been diagnosed with left frontal lobe astrocytoma tumor. I am having surgery on 1st June.

Would like to follow your journey too.

Thinking of you,
Sarah

Shannon S said...

What a blessing Christi is! If I were in a situation like this I would only hope that I could be half as positive, transparent, and honest as Christi has been. Her faith inspires me. Being a Christian means praising Him in good times and in the bad! Thanks Danielle for sharing this with us... I am definitely praying!