Belief in Hope on the Horizon

San Francisco's trip resulted in another "status quo" for the tumor. Heather continues to do well, considering part of the dumb thing is still in her head! Waiting for Dr. Chang to greet us in the waiting room is always difficult: I notice that my legs twitch, I can't sit still, and Heather is a bit "short." I look around the waiting area and always remind myself that EVERYONE is in that waiting room because of a brain tumor. I begin to make-up my own stories about all who are waiting; and in my stories, they all survive because Dr. Chang saved their lives. Eventually, Dr. Chang comes out and gives Heather her hug and we move to the inner room.

Dr. Chang sits at the multi-screen computer and begins her report. We have been so fortunate that her reports - other than the first one she delivered to us - have been good. I always feel odd saying we received "good" news when Heather has a freakin' tumor in her head, but "status quo" IS GOOD NEWS! No change = GOOD NEWS. We are lucky :)

We had to ask Dr. Chang some questions that were a bit uncomfortable because it meant we had to also discuss the tumor, the Grade 3, the current prognosis - all the UGLY stuff that comes with having brain cancer. It's those subtle reminders that can knock the wind out of you, but then you realize that we are still planning for the future because we believe in the future. We believe in better treatments; We believe in miracles. We believe in a cure.

From the moment Heather was born, I knew she had a purpose in life. She was 3 weeks late (and I was as swollen as a anyone would be after carrying a child an extra three weeks in Nebraska during the summer!). But what made her birth date more special was the date itself: September 13. The same date my father died from brain cancer in 1962, Of course, I had NO vision of what was to come, but I just knew she was special. So, I have always believed her diagnosis just means that she will be around for a cure. The circle of life will be completed with her receiving the treatment that my father could never even dream of. So, through those questions and answers that we shared with Dr. Chang, comfort came when we could say: "We never know when that cure will be here, but it will."

Heather had to see a neurologist Thursday (3/18). Dr. Chang thought Heather might be having some motor seizures on her left side, particularly in her left hand. In addition, her left side seems to be a bit weaker, so she is back into Physical Therapy. The neurologist, Dr. Diesing, believes her issue is more spasmodic, not seizure related. However, she will undergo an EEG on April 2 to make certain. She will forever need to maintain muscle therapy, which she is already learning in physical therapy. He really explained how complicated her surgery was and how well she is doing for such a task. Apparently, we never knew the full extent of her surgery. We have been told before that there is no way surgery could ever get any closer to the motor skills area because there is NO room. Dr. Long performed the surgery right on the line with NO room to spare. I guess hearing it again was good for us.

I cannot think or a more appropriate way to end this post: In memoriam of Nathan Waggoner, a very courageous 17 year old who lost his battle with brain cancer this morning (3/19/2010). We honor him for his fight and we honor him for his courage. As a mom, I don't even want to think about what Monica and her family are going through right now. Our heartfelt sympathies and prayers go to the entire family and the friends Nate has left behind. God Bless.

Sue

Omaha Did It Again!

Who would have ever thought that LFAC's "BIG" fundraiser would have another successful year? When we raised $44,000 last year, I never thought we would top it. But leave it to Omaha to support a great cause once again in 2010!

When the final horn sounded to end the game on Saturday (2/27), we had our "estimate" for the announcement: almost $50,000. We are still counting all the money, which is coming from several directions, and we are now just barely over $50,000. I think I am still in shock. So many volunteers helped to make this dream come true: Michele, who has a vested interest in both UNO and brain cancer; Bob and Robyn, who have made brain cancer their personal cause even though Bob is battling his own fight with lymphoma; Jean and Jeff, who continue to support LFAC; Kate, who is now known as our very own "ticket master"; and all the people who supported us during the six games. Each game we had about 30 volunteers, some of whom worked more than one game.

Jon and I are exhausted but feel so proud to announce that LFAC will be able to purchase the Functional MRI (fMRI) for Methodist Hospital and Estabrook Cancer Center. We created LFAC to make a difference, and now we have. But, without all the support from our family, friends, and Omaha community, that would not have been possible. So, THANK YOU!

Someone asked me, "So, now what are you going to do?" My response: "Going to plan our next event [car show, I think]!" I'm certain we can continue to help in some manner.

Currently, Heather and I are preparing for her UCSF medical appointment next week. Unfortunately, Heather is sick with bronchitis and an ear infection. She has been miserable for about two weeks. With a new dose of antibiotics and steroid breathing treatments, hopefully she can shake the bug.

Brain Cancer Update from The National Cancer Institute:
In 2009 = 22,070 new brain cancer diagnoses; 12,920 brain cancer deaths. TOO MANY!