August 20, 2008

MRI Results!


Hi Everyone,

Well, it was a ridiculously long day. Evan went through the whole MRI process this morning (2 hours from start to finish). But when we got to our appointment with Dr. Choucair and he started to pull up Evan’s pictures on the computer, we discovered there was a problem with many of the images. Evidently, the MRI machine was having some technical difficulties this morning.

So, after we finished our meeting with Dr. Choucair we had to go back over to radiology and get a good portion of the scans done again. What a pain! At least I had a good book to read, but Evan was not particularly happy about it. The doctor will call us after he reviews the new pictures, but it probably won’t be until tomorrow.

From the images that he could see, Dr. Choucair thought the tumor looked pretty much the same as it did 8 weeks ago. No change one way or the other. There was one corner of the tumor that he thought might be slightly enhanced, but he said it was probably just the poor quality of the image that made it look that way. In any case, we won’t have definitive results until tomorrow.

Evan and I both had a feeling that the tumor would stay the same this time, so it didn’t feel like a huge shock or surprise to us. And, as weird as it might sound, it actually came as somewhat of a relief. If the tumor had shrunk again, I know Evan would have been determined to push on with the treatment schedule and maintain the brutal pace. But now that the benefits of this chemo seem to be leveling off, and after hearing how hard the last 2 months have been on Evan (physically & emotionally), Dr. Choucair thought it would be appropriate to ease off a little, and go to a 3 week chemo schedule instead of the every-other-week treatments he’s been doing. I really just want Evan to feel better, and have more good days - so that was music to my ears!

Evan will go ahead with the scheduled chemo next Tuesday, but then he’ll have three weeks until the next one. Hopefully, that will give him more time to recover from each dose, and give him a full week of feeling better (instead of just a day or two) before his next treatment. The doctor would really like Evan to stay on chemo until next March, even if the tumor stays the same. And I don’t know how Evan would be able to endure 7 more months of this without making the treatment schedule a little bit easier. Hopefully the three-week cycle will make that possible. (Next March would mark a full year on this chemo, and that would increase the odds of keeping the tumor in a dormant stage after we stop treatment.)

On a happier note – this Sunday, Evan and I will celebrate our 17th Wedding Anniversary! Last year, we spent our anniversary at University Hospital and Evan got a brain biopsy as an anniversary gift - really awful! This year looks to be a whole lot better! Thanks to the unbelievable kindness and generosity from some of our closest and dearest friends, we will be spending three days and two nights at The Homestead Resort in Midway, Utah. We can hardly wait! We have the best friends in the whole world!!! Thanks guys!!!

On another happy note – several of you have asked how our kids are doing, so I thought I’d give a quick update on them too. Ryan turned 13 in May and had an incredibly awesome summer. It included 2 Scout Camps (which he loved) and a lawn mowing business (which kept him busy and made him rich). The second scout camp was actually a leadership training camp, and I swear he came home two years older and two inches taller. He said it was (quote), “The best week of my life, Mom!” He has grown and matured so much in the last year. I’m really proud of him! He started 8th grade this week, and was recently called to be the President of the Deacon’s Quorum at church. Obviously, Ryan is old enough to understand everything that is happening to Evan and the potential implications of it. But somehow he has been coping remarkably well. Both he and I have been meeting with a fabulous counselor every week or two throughout the last year, and I know that has helped tremendously.

As for Lindsay, she is starting kindergarten next Monday!!! She is feeling quite grown-up about the whole thing! She’s got her Tinker-Bell backpack (I had to talk her out of the Hannah Montana one) and she is rearing to go! She is so excited and so ready, (she turns 6 in October), that I can’t feel too sad about it. It might hit me on Monday though, we’ll see. She has been playing with friends, taking swimming lessons, and enjoying visits from Grandma Gardiner, Grandma & Grandpa Madsen, as well as aunts, uncles, and cousins from both sides of the family at various times throughout the summer. Also, she is absolutely in love with her Grandma Gardiner’s new dog. She has already made an invitation for the dog to come to her birthday party, it’s pretty cute. As far as Evan being sick, we can tell by the questions she asks that, on some level, she understands what’s happening and what’s at stake. But so far, she’s been pretty matter-of-fact about it and seems to be satisfied with the answers we’ve given. Once she has an acceptable answer to her question or concern, she just moves on. She’s like, “O.K. that sounds good. When’s lunch?” Besides, she loves having her Daddy around all day. She finally has someone at home who will play Candyland and Chutes-and-Ladders with her.

So that’s about it. (Probably more than you wanted to know or read)! We’ll continue to keep you posted. Thanks for all your prayers, and kind thoughts. We’ll talk to you soon.

Love,
Margot

August 7, 2008

The One-Year Mark!


Dear Friends and Family,

It might be hard to believe, but today marks one full year since Evan’s diagnosis. It was August 7th, 2007, when I got the phone call that turned our whole world upside down. Thinking about that day has brought back a flood of memories and emotions for me.

We had been waiting anxiously for the results from the MRI which Evan had received a few days earlier. I had called the doctor’s office once already that morning hoping to get the results from the nurse, but was told the doctor wanted to give me the results himself. That was my first clue that they had found something wrong. It was an agonizing hour before the doctor called me back.

When the call finally came, I shut my bedroom door and sat down on the floor as the doctor broke the news. A million thoughts started racing through my head, so I grabbed some paper and a pen to help me concentrate. I tried to stay focused by writing down the words and phrases I was hearing. I wrote, “Malignant brain tumor,” “Center of the brain,” “Size of a walnut,” and “Find a neurosurgeon and oncologist, ASAP.” When I hung up the phone, I just stared at those words in disbelief. It felt like we had just entered someone else's life.

During the next two weeks we added several more scary words to that piece of paper. We heard words like, "Inoperable," "Terminal Cancer," “Glioblastoma Multiforme (GBM for short),” "Stage-4," and “No Cure.” It was overwhelming to say the least – especially all the statistics that were thrown at us in terms of life expectancy. Every new piece of information felt like a punch in the stomach.

We were told that the average life expectancy for someone with a Stage-4 GBM is 11 months. At that time, watching Evan’s mental ability deteriorate so quickly, I honestly did not know whether he would still be here today. But here we are, 12 months later, and I’m happy to say Evan has “beat the odds!” For someone with this type of cancer, being a one-year survivor is a huge accomplishment!

Evan pretty much feels crummy all the time now, and he’s been extremely tired the last two weeks. But his mental ability is ten times better than it was a year ago, and he’s still willing to fight and endure the treatments. For that, I am grateful and so proud of him.

We also want to express our deep appreciation to everyone who has helped us during the last year. We are so grateful and so humbled by the endless acts of kindness we have received from family, friends, doctors, and nurses alike. In spite of all the sadness and difficulty, we have never been more blessed or felt more loved than we have in the past year. Thank you, Thank you, Thank you, so, so much!!!

Evan’s next MRI will be on Wednesday, August 20th. We’ll let you know how it goes.

With love and gratitude,
Margot