Wednesday, January 7, 2009

What happens now?

We had our appointment with the surgeon yesterday. He was pleased with how Brian looked and was speaking. We explained about Brian's vomiting episodes. He had two theories. One being that Brian could have something viral going on that manifested in his inner ear as can happen with sinus viruses causing some sort of vertigo issue. If this is the case, it should clear up on its own. His second theory was that the Keppra (anti seizure drug) Brian takes which recently switched from manufacturer to generic may be causing this. So we are going to start taking the non-generic formula again for the additional cost.

The CT scan Monday looked fine - the ventricles are not enlarged or smaller showing the shunt is working fine. In addition, the tumor has not grown. However, it is showing increased enhancement meaning the areas in question are still considerably in question and probably "hot."

We told him we were leaning to chemo instead of surgery at this point in time. He has no issue either way with our decision.

We are still having issues with the insurance approving the chemo for Brian's condition. Latest we heard was that it could be A MONTH before they have a decision. So, today I have to make that unpleasant phone call myself to implore on the insurance company's good nature to rush this as my husband has not had any treatment for his illness in 3 months and this is our last option. Tentatively, though, we have scheduled for Monday, January 12.

Today we received a phone call from Brian's employer who is offering the company voluntary separation packages. The package makes incredible sense for us if we think Brian is not going to survive for the next 6 months. If he survives the next 6 months, it becomes riskier. After 18 months, it becomes disastrous unless I am back to work at am employer with good medical benefits at that point in time. I did our budget yesterday assuming Brian would be on his short term disability until October and start long term reduced salary in November. With this, it is most likely that I will need to go back to work sometime this fall anyway to make ends meet. This is stressful given the current job market. The major employer in this town is trying to get its employee's to separate in order to avoid layoffs. There is little available right now. I have an engineering degree, but have always worked in accounting/finance. Accounting/finance has changed drastically in the last few years since I quit with the implementation of Sarbanes Oxley rules and more and more companies wanting CPA's. I am not going back to school to become a CPA. Also, I don't want to be at a new job if Brian is getting sicker. I want to be with him taking care of him and taking care of my boys. I want to give my boys stability and love and assurance - not day-care and mommy gone a lot, etc.

I am stressed. I knew this would be the year of making big decisions, but I didn't expect them all to come upon us so fast. I am a mess. Also, I wasn't going to say this because I don't want to do this with any attention on myself, but I am trying a 3 week fast. I am not doing a full fledged fast, but fasting from a few things in my life that I know I can go without. I am replacing them with prayers for Brian's healing and for our financial provision. So, when opportunities like this voluntary package come along, I don't know if it is God's way of saying "here is my provision for the next year" or if it Satan attacking our faith for Brian's recovery. Also, we have to make our decision on this by MONDAY.

Here is what I am stressed about:
Insurance issues with chemo next week (waiting another month is just not an option in my mind)
Making the phone calls for the insurance issues.
Decisions about chemo/surgery.
Making a decision about the separation package.
Going back to work/making ends meet.
Sticking to the fast for renewal spiritually.
Finding a new pediatrician for the boys.

Please pray for us.



  1. Angie - You are such a strong woman. I think of you often and pray for Brian's recovery. It would be a hard decision to take the separation papers because it would make me feel like I was realizing that six months was the max time left. What hard decisions you have to continually make.

    (PS: I did wave as we drove by on the way to Alabama.)

  2. I'm asking Heaven to send you a clearcut answer, and that the decision-making stuff will slow down for a while. Prayers & hugs

  3. I am praying that God makes his will clearly known to you.

  4. I will keep your entire family in my prayers. May you be able to make the tough choices that lie ahead!

  5. I know I haven't been around lately, but y'all have been in my daily prayers.
    Blessings to you darlin'.
    I know that with prayer God will lead you in the right direction.

  6. You and your family are in my prayers everyday.

  7. Angie, I am praying for you and your family! Stay strong and do keep believing!

  8. You, Brian, and the boys are always in our thoughts and prayers. You continue to amaze me.

  9. I have not stopped praying and I will continue to pray. I know you must feel stressed, but you have a strong faith and you need to trust your faith and lean on God, as you are doing. I hope everything works out quickly with the insurance and that is at the top of my list - that has got to be so difficult. The results sound encouraging, right? I'm always thinking about you guys - hang in there!


  10. I think about you often. My prayers continue for you and your family.

    Angie--please, please let me, let us (ALL your blogging buddies) know if there is anything (and I mean ANYTHING) we can do. PLEASE.

    The prayers and positive thoughts will continue. You never have to ask for that . . .

  11. My goodness, it is overwhelming just to look at the list. I hope prayer gives you the answers you seek and desparately need.

    I read this and I wish that I was your next-door neighbor. I do this Dr. and insurance stuff like nobody's business--do you have a friend that knows how to navigate this type of stuff? A nurse, pharmacist, pharmacy tech, Dr.s office manager? This is the kind of thing that someone could take off your plate if Brian gave them a written authorization to speak on his behalf. Since much of it is just negotiating phone trees and escalating until you get a person that can take action, it doesn't have to be you personally--just someone that wants to help you and knows the system.

    Thinking of you as you navigate these trying times.

  12. Praying for you while you sleep.

  13. Prayers and thoughts are on their way at mock speed friend.

  14. I am absolutely praying for you Angie.

  15. Angie, I pray for your family all the time.

  16. You are always in our prayers: we Keep Believing and we Keep Praying. For the rest I am speechless...
    I am so glad you blog all this stuff, it makes you realise how not only a sickness affects a person and his family, but all the cr.. around it, which as Jenn @ Jugling Life already mentioned should be taken care of behind the curtains. This is so hard. We love you! Monika.

  17. Hey Angie,
    As I was praying for your family, I remembered Jeff telling me about this early out package and that some people were taking the early out and will then reapply in two years (for example they were taking the time to get a master's degree.) I believe if you take the out, you can't work for the company for two years but can apply after that period. I don't know if that helps. My Mommy's group at church boldly pray for a COMPLETE recovery for Brian. Our God that can move mountains can certainly heal Brian whom He loves so much.

  18. Praying for you in Ohio.


  19. Hey Angie,
    Are you doing the Daniel fast by chance? I started the week with a 21 day fast. I have many reasons for the fast, but spiritual breakthrough is the biggest. I will pray for you and Brian as always.
    "Just be still and know that I am God."
    Love ya,

  20. Your strength amazes me.

    I am complaining about not having a pill covered by my insurance for narcolepsy and you all are dealing with this. Prayers said for your entire family!

  21. Brian, Angie and Family, we continue to pray for a miracle for Brian and to help you with all your challenges.

  22. Yes, you and Brian and the boys are prayed for, every day, even in the night.

    My prayer is that a peace that passes all understanding will cover you all and carry you through this.

  23. Oh, Angie. You do have so much to be stressed about, just know that I am always thinking about you guys and know that you are a beautiful strong family. You are always in my thoughts.