Thursday, July 22, 2010

Let's get technical, technical!

These last two days have been heavenly. Gideon and Brody have been best friends. Gideon is actually interested in playing outside and walking around... His walk is still off kilter and he has a difficult time standing up or climbing anything, but he tries! He always attempts and then says, "Mommy! My legs stopped working again..." like he is reporting that his shoelaces are untied. It's the new normal. My mental video camera has been rolling nonstop so that each happy moment is captured and stored up for later.

We now know what "later" is going to entail... well, more than we knew before. Again, everything depends on Gideon's reactions to chemotherapy, his blood counts, his ANC levels...all of it. We will never be able to predict with certainty which days will be good days and which days will be difficult days (I won't say "bad days" -- let's get that out of our lexicon, shall we? You are alive and it is a day. There is nothing BAD about that! And I am now stepping down from my soapbox and exiting on stage left).

The Facts:

Stages of Chemotherapy
1. INDUCTION (we are DONE with this stage!)
2. CONSOLIDATION (we start this phase tomorrow at 8:15am): about 1 month long
3. INTERIM MAINTENANCE: about 2 months long
4. DELAYED INTENSIFICATION (this is the most difficult one, from what we've been told): about 2-? months long
5. MAINTENANCE: remainder of the Chemotherapy until the 2 1/2 years are up!

This newest stage of chemotherapy (Consolidation) is further Central Nervous System preventative therapy. Really, we don't want the cancer to seep into the spinal fluid or the brain, and this leg of the treatment really acts as a precaution to this potential danger. Tomorrow morning (also known as DAY ONE of Consolidation) he will have a spinal tap, Methotrexate chemo through the spine, and Vincristine. The Vincristine is the one that messes with Gideon's nerves and his ability to walk normally, etc. It is what has already caused those noticeable differences in how he carries himself.

How this month will look:

* ORAL CHEMOTHERAPY DAILY: 6MP (this is a new one Gideon has not taken yet... we're praying it tastes more like candy than medicine. Have I mentioned we don't give up dreaming in this house?) It does lower blood counts, and it has some other less common side effects. We are praying those side effects stay far away from us.
* DAY ONE (tomorrow), DAY 8, DAY 15: spinal tap, Methotrexate
* DAY ONE: Vincristine

I think we'll stop at this phase and once this leg is complete, we'll focus on the next. How'd I do for being all technical and straight forward? I didn't even get into the realm of the metaphor! I am a mathematical story problem with the picture all drawn out and the solution circled. Plus, I showed all of my math. Love me, mathematical and straight-forward thinkers! Love me!


  1. Thanks for sharing the exact steps of this process. I've often wondered. All my love to Gideon!! xxxxxxoooooo Jenelle

  2. I like what you said about getting "bad days" out of our mouths. My grandpa used to say that "all days are good...some are just better than others." What a great way to look at life! We continue to pray for Gideon and for your family!

  3. Sixty-five kids, ages five to eighteen, are praying for Gideon every morning before they start their day at our drama camp this week and next. I shared Gideon's story with the kids early in the week and the kids fell in love with Gideon and vowed to pray for him each day. The cards, lovingly made in their free time, are piling up and I will send them on when we finish the two weeks of camp.

    The show we are working on is Beauty and the Beast. We talked about the beast that has entered your lives in the form of leukemia. In the story we are working on, Beauty was repulsed by the ugly beast holding her captive, and when he let her go, she jumped at the chance. But when she returned home, she soon realized that she loved the monster, in spite of his ugliness, and knew she could not live without him. Soon she saw the great good that had come into her life and she realized that the Beast was not a beast at all, but a handsome prince. Pain and sorrow were transformed into contentment and delight.

    We pray for great endurance, strength, and faith as you wait for the loveliness that hides behind the ugliness to emerge!

    Colleen Averill and the
    CFC Drama Campers

  4. You are an amazing mother, Amanda! We pray for you and Tom as parents who fight for their loved little hero and mighty warrior, Gideon.

    Thanks for allowing us to be updated via this blog. Continuing to follow all of you in this journey towards healing through these many complicated phases - loving all of you and wishing you strength and energy and all that you need to keep moving forward. Love to all of you - the Buds