Wednesday, April 9, 2008

Results - April 9, 2008

First of all, thank you to so many who have been sure to let us know you are thinking and praying for us this past week as results day approached. It is always a difficult week.

Let me start by informing you Brian has not been feeling great. He has suffered from some serious insomnia that seems to only be remedied with sleeping aids - not that there's anything wrong with that- but we would certainly prefer he get natural restful sleep. He has had some new "sensations" on the right side of his body and that is about all the more detail I can give you because I don't understand them and he can't explain them any better. He can't explain them any better because it is simply a strange, crazy type of cancer that slowly inflicts different parts of his body depending on which part of the brain is affected. It is not like he can say, "my arm hurts" or "I can't breathe well because of my lungs." Rather, he gets slight headaches (are they sinus or something worse?) and feelings or lack of feelings in his body parts for short durations at a time (Did he sleep on it wrong, did he over use it, or is it something worse?) It is just very difficult to grasp and explain.

Yesterday, we heard from the Stanford team. The areas that changed last time have continued to change. It COULD be radiation effect, but the team tends to hypothesize it is tumor (still shudder when I hear the word) progression. They recommend a change in systemic approach (English: a new chemo (I had to ask, too, don't feel bad)). Dr Recht, the neuro-oncologist at Stanford Cancer Center recommends Avastin (anti-angiogenesis: works to deplete the blood supply to the target area) in conjunction with a chemo in a different family than the Temodar Brian has been taking, namely CPT-11 (Irinotecan). These chemos are administered via an IV drip in the clinic. It has been 8-1/2 years since Brian received a chemo IV drip.

The Peoria doctor gave us the results today. Pretty sad when you can hear from across the country AND their specialist board/panel has reviewed your results AND gets back to you with a consensus before your local doctor even sees you initially. That just gives you an insight into the type of care Brian receives here - very adequate, but not very timely. Dr. G and the Peoria radiologist are in agreement with Stanford that we COULD be seeing radiation changes, but need to treat it as though it is tumor *shudder* progression and change Brian's treatment plan. Dr. G. has used Avastin and CPT-11 on other glioblastoma patients who stopped responding to Temodar. The Avastin is an anti-angiogenesis (agent attacking growing blood vessels) and the CPT-11 is a more standard chemotherapy. Brain tumor patients using the cocktail have shown favorable MRI results, but the clinical results are yet to be determined (translation: increase in prognosis, change or decrease in symptoms. I had to ask again, too.) due to its more recent use with brain tumor *shudder* patients.

The Avastin and CPT-11 will be administered in the clinic every two weeks. Side effects are pretty typical for chemo patients. Brian will also have blood drawn every two weeks to administer his levels - white cell, red cell, platelet, liver, etc. The CPT-11 takes about 90 minutes to administer. The Avastin takes about an hour. There will also be an anti-emetic administered (no puking allowed drug. That one I knew from the past.) This new adventure commences Monday, April 14, 2008 at 8:30 am.

Our reaction to this news:

Not overly surprised given how Brian has been feeling (both)
Sad (me)
Hopeful (both)
Frustrated (both)
Resilient (Brian)
Scared (me)
Withdrawn (me)
Crabby (me)
Comforting (Brian)

Terrible role-reversal in our reactions, I realize, but this often happens. When one of us reacts a certain way to news, the other picks up the slack. The roles will probably reverse or we will meet in the middle soon. It is early in the process.

I don't have a lot of words of wisdom or insight. This is very serious, but we have to deal with it with whatever resources available. We need to be lifted up in oh so many ways.

I try to say optimistic and encouraging and uplifting on this blog. I do this for good reason. First of all, OCCASIONALLY, Brian actually reads what I spend all this time preparing. Also, I re-read what I write and what YOU write A LOT - for encouragement, insight, laughter, love, validation, hope, etc. This needs to be a source of constant hope for us. Make no mistake, what Brian needs is a miracle. Science will not heal Brian from what he has. However, science alone did not heal Brian in the past. Our Savior healed Brian via various medical and scientific avenues. This time, science has little left to offer. Fortunately for us, our Savior never runs out. We know we cannot will God into healing Brian. Regardless, we hold tight to a higher purpose and meaning for all of this in our lives. We simply have to.

Now I gotta go figure out how to explain that to our boys.



  1. Angie,

    Thanks for the update. I know it takes a lot of time to write all this for all us but everyone is so greatful for your blogs. Your God will never run out, and you right about that. We have to trust him and keep believing.
    I love you.

  2. I am keeping you and your family in my prayers. Miracles happen when we least expect them, I keep that thought close to my heart. KEEP BELIEVING


  3. I've been checking all day for the update. Take it a day at a time. I love you and I miss you. We will not stop praying.


  4. Now faith is the substance of things hoped for...that is NOW faith...and the evidence of things not seen..that is NOW faith...Ours is not to know, but to believe...With His stripes, we are healed...Hang on to His Words, too, Angie and Brian.

    I hope to visit in the near future. When would be a good weekend to come see you? I will see if I can get Deb or Vicki or Jo or your mom to come too. I love you!!! Jane

  5. Angie,

    I am sorry that the results weren't as we were all hoping. I will continue to pray for you all.

    God holds us all in his hands...please take comfort in that.



  6. I've actually been checking in periodically out the day.

    My Mom goes through similar MRI results every 6 months and I always get the feeling of hurrying up only to wait and see some more. There's never any definitive news either way. It's tough - but you are way tougher my friend. Please know you are all in our thoughts and prayers. And please tell Brian I still have 160GB iPOD envy. :)


  7. Oh Angie, explaining it to the boys sounds like an incredibly hard job. Are there any books... has anyone written anything.

    You have a way with words. perhaps you should write a children's book... you know... your story.

    I know I have said it before, and I only say it again because it is something that makes me feel comforted everyday... "it is all in God's hands"

    You guys are in good hands and i will pray for everyone.

    Oh... and KEEP BELIEVING

  8. Angie,

    Thanks for the up-date. I have been peaking out the window all day stareing at your house. Not sure what I thought was going to happen but I just keep stareing. We love you guys very much!!! And continue to keep praying!

    Mike, Kathy, Jessica, & Nicole

  9. Angie, I am praying for you and Brian and the boys. Please keep us updated and know that I am rooting for you and your family.


  10. Oh, sweetie. I wish it were better news. You know we're all pulling for you and praying for a miracle.

  11. Dear Angie and Brian, I have been reading your blog for about a month now, since I found it off from ElizabethEmbracingLife's Blog. She has been such an inpiration to me, as well as you.

    I took a special interest in your blog, since my very dear sister passed away after being diagnosed with a Glioblastoma. She lived 11 months after her diagnosis. Not even 2 years ago.
    While doing some errands in Portland Or. today, several times I sent up a prayer as I thought of you and your family. I knew you would be getting the results of the tests today, and I hoped you would feel like updating us. I knew that in one way the results can't come fast enough, and in other ways.. you'd rather live the rest of your life without knowing..

    I want to encourage you not to give up.. The Lord will give you the strength, and peace to hold onto His promises. And there are many ways that He CAN CHANGE THE OUTCOME YET!! Miracles happen even in this day and age!!

    "Through all our trials we have a never-failing Helper. He does not leave us alone to struggle with temptation, to attle with evil, and be finally crushed with burdens and sorrow. Though now He is hidden from mortal sight, the ear of faith can hear His voice saying, Fear not; I am with you.Rev. 1:18

    "I have endured your sorrows, experienced your struggles, encountered your temptations. I know your tears; I also have wept. The griefs that lie too deep to be breathed into any human ear, I know. Think not that you are desolate and forsaken. Though your pain touch no responsive chord in any heart on earth, look unto Me, and live." The Desire of Ages, pg. 483.

    "Thank God, we are not alone in this chaotic world. "There is a Friend that sticketh closer than a brother." Prov. 18:24. The apostle Paul knew what Jesus had done for him, and he admonishes us to "cast all your anxieties on Him, for He cares about you." 1 Peter 5:7, RSV.

    I recomend you find a book called, "Triumphant in Suffering." by Merlin L. Neff. published in 1954. It sure helped me after my sister died.. I'm sure it will help you.
    A sister in Christ, Lis Allen, the Pacific Northwest.

  12. Your family will remain in my prayers! I know this is easy for me to say- but you have to trust, believe, and know that whatever is happening is happening for a reason.

    Keep believing! :)

  13. I am sad to read this news, and will keep your family in our prayers. Can you make a little book for your kids. Talking about sickness and sometimes the process. Keep trusting in God and His deliverence each and every day.

  14. I will keep you and Brian in my prayers, Angie. I'm sorry it is so difficult - I'm sorry it is so hard on Brian. I can not imagine how hard this must be to live with, but I do know that you inspire me - you and Brian and you are often in my thoughts and prayers.

    Take care - Kellan

  15. Will keep praying for that miracle...

  16. Angie and Brian,

    As you know, Heather's Grandma Kirby passed yesterday. It is well known that she has had God's ear for many years.

    She was a very special lady and she was ALWAYS praying for Brian. During times of need in terms of Brian's illness I always called upon her to double her efforts for my good friend.

    I have a new friend in heaven and I have been calling upon her to look in on Brian and to go straight to the head man in charge to see what can get done. I smile (and cry) as I think about what she is doing at this moment for your cause.

    Thank you for your friendship. We love you guys.

  17. I have been thinking of you adn wondering how thing sent. You are in my prayers! I wish I had magical words to make it all better and give you the strength that you need to deal with this new information. All I can do is pray, pray and pray some more. You will find the right words to tell your boys. ((Big Hugs))

  18. thanks for the update. And it seems good that they are having a new approach...maybe a change will help things. I hope that your spirits are high and you are comforted here soon.

  19. I don't have any real comforting words, except to say that there are a lot of people out here who are holding you in the light.

  20. Angie--I think of you so often. You are so incredibly strong and optimistic (though I know at times your don't feel you are).

    It sounds positive that they have a strategy . . . this is extremely hopeful!

    Obviously, you have a lot of love and support out here . . .

    I'm saying prayers and thinking positive thoughts.

    Love and lots of hugs.


  21. Hebrews 11:1 got me through tough times as well. We are all standing with you in this when you stand and we are on our knees with you as you pray. We are here with you. Keep Believing.

  22. I have been surfing the blog waves and found your blog through other blogs.

    I don't know what to add that hasn't already been said, but here's another prayer to add to the prayer chain. May the Lord keep you strong. He doesn't give you more than what you can handle. He knows your limits.

    In times like these, He's the one holding you all up. I've always think of "Footprints in the Sand" when anyone needs Him to do the walking for them.

    Take care. Keep the faith. Will check in again.

  23. Angie, please know that I pray for you, Brian, and the boys daily. Please know that it's alright to reverse roles here and there. Please know that you are loved.

  24. Thank you for taking the time to post this update. I'm sure it is incredibly difficult to relive and post many of your entries. My heart goes out to you and your family everyday and I will continue to keep you in my thoughts and prayers as the new treatment begins next week. *hugs*

  25. Oh, Angie. I'm so sorry to hear the news. Your response sounds pretty undertandable to me and Brian's sounds pretty freakin' awesome. It's that attitude that will help him through all of the upcoming trials.

    Good luck!

  26. Angie: We'll continue to hold you up in our prayers to a mighty God, who is capable of more than we could ask or imagine.


  27. Angie and Brian -

    I think about you guys a lot. Your family is in our prayers often. I read your blogg and can't believe how strong your family and faith are. I truly envey that. I'm not sure if we were placed in the same situation that I could be as strong for Roger and my family as you are Angie. Amazing!

    I'm sorry that the news is not great. I truly believe that God has a plan and is working his plan. . . . but wouldn't it be nice if he filled us in on his plan every once and a while :)

    Your family continues to be in our prayers!

    Love from Oklahoma!

    Roger, Kimberly, Jacob, Ryan and Taylor - the dog!

  28. Angie,

    Not only am I praying for you, but I'm writing a novel on the prayer request form for the prayer groups at church. I wish you had received better news.

    Big hugs

  29. Angie - The outpouring of love and concern here speaks so much about the person you are. Your faith and strength are an inspiration and your witness is powerful. I truly believe God is using your situation to reach people who might not otherwise understand that no matter what comes, He is holding us in the palm of His hand and He will not let us fall. It is also a lesson that your sons will carry with them for the rest of their lives.

    The days to come are going to be difficult and scary. Hold tight to your faith and always KEEP BELIEVING.

    You, Brian and the boys will be constantly in my prayers.

  30. I wanted to stop by and say goodbye even though we just met! :) I also wanted to invite you by my place to enter the give away I'm hosting. I'll be doing the drawing upon my return. May God bless you greatly! Hugs~Jenileigh

  31. Angie - you and Brian are in my thoughts... I hope things turn around for both of you.

    I know its been talked about on tv a lot lately, but if you haven't watched the lecture by Randy Pausch it might be good for both you and Brian to sit down and watch it. Spoken by Randy who has cancer it is extremely motivational and could help you get through the touch times. Just google Randy Pausch download lecture and you'll get a ton of ways to view it.

  32. Hugs, hugs and more hugs.

    I'm thinking of you and praying for you all.

    Keep your chin up. I'm believing.

  33. Am sending huge hugs. Especially to give you strength to explain to your boys.

  34. My heart dropped about 10 more feet at that last statement about telling the boys. Bless you guys. I can't even imagine trying to live this and then say upbeat things about it. You and Brian are strong and thankfully on the same side against this. Miracles obviously happen and that is what I am praying for tonight.