Scott & Sunny

Scott & Sunny

Tuesday, March 18, 2008

Its late, the boys are asleep, and as is becoming normal for me, I am sitting here feeling wide awake, yet tired and very, very anxious.

There is a documentary out there, I think its called ‘A Lion in the House’, it is about children and their long fight against cancer. I haven’t watched it and I never will, but the title just sums up how this all feels. I don’t know about other parents going through the same thing so I really wouldn’t like to speak for them, but for me, it’s like a constant dread, something so bad it can’t even be put into words. There are times in the day when I am fine and life feels somewhat okay, not perfect by any stretch of the imagination, but bearable. Then suddenly my heart starts beating so fast that I cant even catch my breath, it comes from nowhere, it just happens. A hundred thoughts and visions appear, all the possibilities, all the things I have seen and read of what could be lurking around the corner. The lion, just out of view for the time being, but for how long?

I know that there are some of you reading this thinking to yourself, “get a grip Stephanie, and stop being such a doom monger – think positive!” Well when you’ve been struck with something like t-cell that only affects about 1 in a million you no longer have the ‘it wont happen to me or my child mentality’, all bets are suddenly off.

Time in treatment and current state of health are also of little comfort. The children we know with leukemia that are currently fighting for their lives have all been in treatment for longer than Scott. Like I said once before, it is 10 long years before the word ‘cured’ is used.

Relapse is the obvious concern, something far worse than the original diagnosis. Should Scott relapse in the next few years a bone marrow transplant would be the treatment plan. This is a procedure fraught with danger and failure. If he were to relapse say 5 or 6 years from now chemo and radiation may be tried again. Scott’s current protocol (POG 9404) in trials showed a relapse rate of 11%, half of those occurring in the central nervous system. Due to t-cell being a more aggressive leukemia relapse usually happens earlier than b or pre-b cell. The median time for relapse in t-cell is 1.2 years, compared with 2.5 years in b and pre-b. But the relapses after 1.2 years could occur years later.

There are also many other concerns, primarily secondary cancers.

On to other things …

I received a call yesterday from the American Cancer Society inviting Scott to attend the Relay for Life next week in Tampa. The gentleman also asked if Scott would be willing to say a few words on his thoughts of Rock Camp. I told him that Scott missed out on Rock Camp last year as he had had a stroke. I think that made Scott an even more sought after speaker!! So we’ll see. Scott is considering it but gets the heebie jeebies at the mere thought of having to speak in public. Whether he speaks or not we will probably attend if he is feeling okay and he can join the other ‘survivors’ in a lap of honour around the track and enjoy the evening of festivities.

Well you’ll be pleased to know I have finished whining, for today at least.

Thanks for checking in. G’night.
In case you ever wondered what the enemy looks like, here she is in all her fat and ugly glory ...


3 comments:

April_Molle said...

Hi! Stephanie~

It's April....Logan's mom! I figure it's about time I left a message! I hope this goes through! :)

I wanted to let you know that I alway enjoy talking to you at the clinic! You are such an incredibly sweet person and Scott is an absolute doll!

I can relate to your journal entry! This is such a difficult journey and it is just so incredibly hard to watch our children go through so much! Scott is one tough kiddo! I have so much admiration for him and all of the brave children battling cancer!

Your family trip to Boogey Creek sounds like it was a blast! I love all the pictures! :)

I had better get going....Emily is up and starting to fuss!

See you guys at clinic on Thursday!

Best wishes!

April Molle
http://www.caringbridge.org/fl/mylittleone/

Sandie said...

I hate to think that you believe for one split second that anyone thinks you are a doom monger or whining ffs (can I say that?)

There IS a lion in your house. And you must do what you must do to keep waking up everyday ready to face it.

I am wired like you. I prepare myself with the facts of every twist and turn or worst case scenario in order to face the possibility of it. Only then can I focus my energy on being positive. I don't know if that makes us insane or pragmatic. It doesn't much matter. It's who you are - and you are brillant. Don't fix it if it's not broken, sunshine. For what it's worth, I adore you just the way you are! I quite certain I'm not alone with that feeling.

Lots of love to you
xoxox
S.

christine said...

Steph, sometimes you can be so thought provoking and it's not at all surprising you sometimes have to focus on the negatives and what ifs. But you also have to keep living for today and I think your not doing a bad job of that.

I really hope Scott does give his talk - it would be such a confidence booster - but if not just enjoy the evening.

The picture is very pretty - why do all the bad things in life look so good - can you explain exactly what it shows.

love and hugs
mum/nana