Wednesday, February 4, 2009

Change of Plan

The CT Scan was read yesterday and compared with Henry's prior scans, notably the one from December. The one spot noticeable then has doubled in size, clearing up any doubt about the efficacy of Henry's current chemotherapy.

Switching chemotherapy is not a clear cut decision as I think I'd subconsciously hoped. The tumor's rate of growth suggests that it's in a pretty aggressive stage. Despite a significant chance the medicines will not have the intended effect, we will proceed with a chemotherapy called Etoposide, a drug previously administered in Henry's initial stages of inpatient chemotherapy. In this incarnation it will be given given orally instead of intravenously and will be given over a significantly longer duration - three weeks out of a four week cycle. We will begin in a few days.

A tumor growing the way Henry's seems to be, is a bit like a boulder rolling down a hill. There's a certain point at which it cannot be slowed regardless of the means. If we've passed this point, we may be measuring his time in weeks instead of months. This has been the reality that has been extremely difficult for us to comprehend, even though we have known it to be coming for months and have known of the possibility for almost a year and half. I'm not sure a parent's mind can digest the texture of daily life without one of their children.

This news came on the same day that another of our little friends with the same cancer as Henry's passed away. Sophia's struggle with medulloblastoma was a particularly harsh one. A struggle that puts in perspective how we can feel fortunate for the twists of fortune that ease Henry's journey. To the Langford's we wish the peace that comes with knowing they did everything they could for her and the joy at having spent what time they had with Sophia.

Despite Henry's erratic sleeping schedule and intermittent agitation and moodiness, he has hours of perkiness in between his TV watching and couch time. Seeing him sit up, talk and interact with us, shows us the personality and spark that we so wish for. It's pure happiness to see.

Thank you all for your notes and gestures of support. For now, we're taking things moment by moment and want for very little in the way of creature comforts. Our family has been as supportive as we could hope for as have our network of friends and for that we're immensely grateful.

18 comments:

Anonymous said...

As always, you are all in our thoughts every moment of every day. I'm sorry you didn't get the news you were hoping for. We are always here if you need anything.

Love,
Shanda and family

Anonymous said...

Just wanted to say thinking of you all always!!!

Shelly

Anonymous said...

Thank you for keeping us updated on Henry's condition. You are all in our thoughts and prayers as you have been since he was diagnosed!Hugs to all of you!

Cousin Susan H.

ms.t said...

Tara and Bryan, I am truly sorry to hear that the tumor has grown. I just have no words to express my sorrow for you and your family. It is just wonderful how you two keep up the blog on little H's behalf. It must be difficult to post at times but you speak beautifully for him. As always, you're all are in my prayers.

Anonymous said...

Wishing I had words of wisdom or comfort--just know your family is in our thoughts during this difficult time.
Jen

Anonymous said...

Wishing for continued periods that show my hero's personality and spark.
nance

Anonymous said...

There are alternative treatments since Chemo isn't working. Check out www.cancerbreakthroughusa.com It is a very informative site regarding cancer treatments. Treatment should make you better, not worse. Ask Jesus for wisdom when making decisions about treatment. God bless you all.
Arlene

Anonymous said...

Please know that your family is in our family's prayers every day as you have been since the start of this journey.

The Hebbs

Hillbilly Fairy said...

Blessings to you and your family... I think of you often. Henry is one of my heroes, and I've only met him once.

Anonymous said...

Bryan,
Our thoughts and prayers are with you, Tara, Sophie, and Anna -sending love from Pittsburgh.
Janet P.

Anonymous said...

Hi from Mimi,
(I am a friend' of Kay's (Mimi) and she asked me to read her the blog today - she couldn't get on email)

My love and prayers are with you all. I just cannot find the words...

Love, Mimi

Anonymous said...

I hope you are able to find the comfort and solace in each other to sustain you. Know that you are in the hearts and prayers of a very large circle of familiy and friends who are pulling for all of you and especially for Henry. You have touched all of our lives in imaginable ways with your love, your strength and your character.

Anonymous said...

I hope you are able to find the comfort and solace in each other to sustain you. Know that you are in the hearts and prayers of a very large circle of familiy and friends who are pulling for all of you and especially for Henry. You have touched all of our lives in imaginable ways with your love, your strength and your character.

Justin said...

We are keeping the faith and praying for you guys! Miracles do happen...

Anonymous said...

Love Yall!
Susan V.

Anonymous said...

Words can't express how saddened we are to hear about Henry's latest scan. Happy to hear though that Henry is still having periods of playfulness which must be so wonderful to see. Please know that Henry and each of you are always on our mind and we pray for peace and comfort for you all in the days ahead. We're here for you in any way you need.

Love, Julie, Brad, Patrick, Andrew and Samantha

Anonymous said...

I'm so sorry to hear of the scan results. I know it is definately not the news any of us would hope for. Please stay close and remember we are all here for you. I will keep you and your family in my prayers.
Love,
Gina H. and family

Anonymous said...

Sending you hugs from Arlington - we keep you in our thoughts and prayers. Big sisters Anna and Sophie - keep up the good work of keeping Henry and your parents happy and entertained!
Love
Linda and Val