Friday, January 25, 2008

Grade 4

The invader has officially been classified as a grade 4 astrocytoma, also known as a glioblastoma. It is the most aggressive kind of brain tumor. It has recruited blood vessels to help it grow.

If you look at the literature related to an inoperable glioblastoma, the outlook is grim. Dr. C told us, when asked, that some patients have about four to six months to live after diagnosis. But he also told us that they are treating Steve, not a statistical group or population. They are treating an otherwise healthy 39-year-old father of two, who until mid-December ran about 12 miles a week, who eats well, who doesn't drink or smoke.

The patients who do the best, he said, who outlast the statistical median of one year, are those who are engaged in life, who focus on family and good things. They don't sit and stare at a calendar.

Treatment plan
We meet Monday with two doctors at UT-SW in Dallas -- a radiation oncologist and an oncologist who will carry out the treatment plan drawn by Dr. C and his team.

He'll need five to six weeks of radiation, targeted at the tumor.
The goals of the radiation:
Prevent the tumor from growing more
Improve Steve's symptoms
Reduce the bulk of the tumor

Along with radiation, Steve will begin a 42-day cycle of Temodar, an oral chemotherapy that he will take every night before bed. (I learned today that if we had to pay cash for the 42-day dose, we would owe almost $12,000. Instead, our insurance should cover the cost, minus our very low co-pay.)

We'll return to M.D. Anderson a few weeks after radiation therapy is complete for a scan to get an idea of how the tumor has responded. There's just this one course of radiation, but chemotherapy will continue on a schedule yet to be determined.

Possible side effects
If the radiation is doing its job, it will kill some of those awful tumor cells. When that happens, there will be some additional swelling, which will increase Steve's symptoms. The doctors will try to control the symptoms with the steroid he's taking.

As the treatment continues, fatigue will affect Steve. He also may experience nausea, though he'll have some preventive drugs.

One of the biggest risks is a reduced platelet count, which would make him much more susceptible to infection.

Looking forward
We are eager to meet with the team here that will help to take care of Steve the next few weeks. We look forward to a few weeks at home, with no planned overnight trips to hospitals. We are so ready to fight this tumor, bracing ourselves for the inevitable ups and downs associated with the treatment.

Steve and I talked today about one of the hidden gems in his brain cancer journey. There are more treasures in this awful situation than I could have imagined, and one of them is the blatant reminder that today is truly a blessing. When tomorrow comes -- wow, what a gift.

Now, don't get the idea that we dance around the house celebrating the Damm glioblastoma. Sometimes I'm surprised that we still have tears to shed. There's been a lot of uncontrollable sobbing. Fear grabs us throughout the day. The unpredictability of our schedules and routines has created more chaos than any of us are comfortable with.

Still, we know we are loved by God and by friends and family. And we have faith in miracles.

11 comments:

chapman.d said...

Ok, so now we are totally speechless. We couldn't love and support you more and YES, each day is a gift. May God continue to show us how to help and support you and my God continue to give you strength and patience. Love, in Christ, Debbie

mbdyoung said...

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."--John 16:33 ...Our Lord and Savior overcame the world--how awesome is that! We are trusting in Him to help you overcome this invader....Love and blessings to you all...The Youngs

DayleShockley said...

Praying for you all.

Anonymous said...

Tyra, thank you for writing such beautiful words in such difficult circumstances. You inspire us to live more joyfully and more gratefully. You and Steve are both amazing, kind people.

Lori, Scott and Ally Nolen

Anonymous said...

We are continually amazed by your strength in such difficult circumstances. You guys are so right about cherishing each day. We will continue to pray for you guys and will help in any way you need. We love you!
Beth Burris and family

Anonymous said...

It's amazing how the Lord works during these times in our lives - you two are so inspiring -- day to day you minister to us all thru your faith and love -- thank you so very much. While we may not have met (I grew up attending CFCC in Houston and still keep on the prayer chain) I have been praying for you constantly and have shared your story with the ladies in my bible study here in Ohio... we're all from different churches, and they too have passed on your prayer needs. I had the privilege to attend Bible College and still keep contact with friends so that places your story literally all over the US. My how HE works --
One last note... when getting completely discouraged, listen to or read the first Lance Armstrong book -- what he overcame was truly a gift from God (someday I hope he'll see it that clearly) but his story is quite an amazing one. One that will bring strength and even more hope.
God bless you - with peace, comfort and strength in mind, body and spirt.

Darla said...

Hi,
Just wanted to tell you what happened to my Aunt Mary, who was 70 when she suffered a brain aneurysm. One afternoon when no one could reach her at home, a neighbor stopped by. They found her sitting on the floor, unable to move. The aneurysm had burst.
She lives in rural Missouri, so she had to be transported two hours away to a full-service hospital. The doctors were not hopeful.
She had an operation and lapsed into a coma. We were told the longer she remained comatose, the less likely she'd ever come out of it. She stayed like that for a week, so the doctors had written her off. (Seriously. They had zero hope.)
But she did wake up. The doctors then said she would never live a normal life -- she'd need round-the-clock care, she wouldn't be able to feed or dress herself, etc.
That was three years ago. Aunt Mary now lives in her same house, by herself, and has resumed her active life with the same incredibly sweet spirit. She goes to church, works in her garden, keeps her house immaculate, visits my mom often. And just like she did before the anuerysm, she sends my kids cards on their birthdays, Christmas and about five other holidays throughout the year. The woman is much more organized than I will ever be. :) And the doctors gave us no hope.
I know this is long, but I just wanted to pass along my aunt's story. While doctors called her a "medical miracle," I think these things happen more often than we will ever know.
You guys continue to inspire me with your awesome strength!
Love,
Darla Atlas

Robin and Steve Ellenbecker said...

Dear Tyra and Steve,
As I write this note to you, I think back over the 5 years (my)Steve and I have known you. We only know you as the most loving, caring, sweet family we have ever met. We are so heartfelt, sincerely praying for God to give you a miracle of health. 20 years ago, Steve was struck with ITP (idiopathicthrombocytapenicpurpura). It is rare, and our oncologist told us he had only seen 10 cases in his career, and none of them survived. From what I remember, a person needs at least 10,000 platelets per (I don't remember the term used) in his/her body at any given time. Steve had about 1,000. His body wasn't making platelets, and when it did, his spleen would gobble them up. Steve was going to be in the hospital for a projected 2 weeks plus...if he even made it. The kids and I didn't know from day to day if we would ever see him again. Then on a Sunday evening at sunset, the sun was blood red, as there were fires in California, causing this effect. Steve and I were outside of the hospital in the garden, reading the bible. All of a sudden, an eagle swooped down over our heads and off into that blood red sunset. We both knew it was God telling us that all was well. That night, our 12 year old daughter, Amy, prayed for her dad (as we did every night before leaving the hospital)...that God would heal him. When she said, "Amen", she looked at Steve, and very excitedly said, "Dad, God told me your platelets will all be there in the morning!" My prayer was that if He didn't do it for Steve, please do it for our little daughter who BELIEVED it to be true. By 8:30 the next morning the blood test not only showed Steve had enough platelets, but he had 100,000 per ___. (Now if that isn't a gift from God!) We were overjoyed. They let Steve out of the hospital by 11:00 A.M. All of the nurses on the floor were telling us what a miracle this was, and patients were asking for our daughter to come and pray for them. (The faith of a child is so strong!) We left the hospital and went straight to a beautiful garden "to smell the flowers". It had been a traumatic time, but at the same time a very special, special time with our Lord. We don't know what tomorrow brings, but we do know that God has us tightly in His arms, and is directing our paths. We don't need to worry (though it may be hard to do), because He is with us!
We love you Steve and Tyra,
Robin and Steve Ellenbecker

Coach Phil said...

So Coach Lee called me at the last minute to say he was going to be launching rockets at the soccer practice field and did we want to come... Of course... Reilly, Emma, and I proceeded to join the Mccormick clan in some good ole rocket launching fun. Along comes a young man, probably 13 or 14 to come help. (reminded me of an older Cooper) He was kind, helpful, and you could tell a very caring kid.

Once we had finished launching all the rockets, the young man's Grandmother, Gwen Thomas, came over to get him and take him home. She was very sweet, we chatted with her for a few moments and then Jesus showed up... She proceeded to tell me how long she had been in Frisco and why she moved to Dallas 14 years ago from West Texas...for cancer treatment! She is a cancer survivor after being diagnosed with a severe case of breast cancer. After talking for a few minutes and sharing with her how my son and Lee's sons knew each other, I brought up Steve and the fight you all are in now.

She then told me that her faith and her little grandson at the time were what got her through. She knew he needed her, and she fought to stay alive for him. She went through chemo, radiation, suffered some setbacks, but she is alive and in remition today. I gave her the link to this blog, she gave me her email and said that she would love to talk to you both to encourage, uplift, and let you know what to expect. She encouraged me, if nothing else, to show me we do live in a small world and that Jesus us brings us the right people at the right time.

Be encouraged and know that with each passing day, your army of believers grows and walks with you both on the road ahead.

Coach Phil

Laura said...

Tyra & Steve,
Your courage, Strength and Faith inspires us and we will NOT stop praying for you. Miracles happen everyday and no one deserves it more than you two!
We will be here for you through it all.
Love & hugs,
Laura, Rich, & Will

Anonymous said...

Steve,

My thoughts and prayers are with you and your family. I survived stage III breast cancer and I know that you will overcome your tumor as well. Chemotherapy sucks but it works. I had a 6cm tumor (size of a golfball) that completely disappeared after the second round of chemo. I had all my treatments at U.T. Southwestern as well. The doctors are the best. I have complete confidence that you are receiving the best treatment possible. I will keep reading your posts.

Melissa Hilliard-Samei