Scott & Sunny

Scott & Sunny

Thursday, October 11, 2007

Its late and everyone is asleep except me. My eyes are watering because Im yawning so much but at the same time Im wide awake and have been trawling the internet reading about bone marrow transplants. A real optimist aint I? I think, no I know, I am becoming scarily paranoid about this whole thing. Worried sick about t-cell renegades rallying themselves for an all out war against my baby. I find myself searching the eyes of the doctors and nurses looking for signs that they arent telling the truth, the whole truth and nothing but the truth. Do they see tell tale bad omens in his blood analysis but arent telling me? Scott had sore legs yesterday, and yeah I know, probably from his recent roller blading, but every half hour I'm questioning him about the pain. "On a scale of 1 - 10 how bad does it feel? Is it any better than an hour ago? Is the pain spreading?" Our cats still seem to migrate towards Scott just as they did prior to diagnosis and in the early days and weeks, I hate that they do that! I wish they would stop and treat him with as much disregard as they do the rest of us. Do they know something I dont know? Today I had to take 2 crazy pills to stop my heart from beating so fast! I hate this shit. We all do. We are all tired and grumpy and bitchy. We are entrenched in a world of pediatric cancers and it feels like every week we hear of a child dying. It may be a child whose blog we have been following, it may be someone we know, and every time it happens it knocks you deeper down. We wander around in a daze for a while, saying nothing, feeling the horror, sadness and misery, feeling downright pissed off at the world. It doesnt seem fair. But life isn't fair, survival of the fittest and all that. Yet even with the most pragmatic approach you cant help but cry yourself to sleep at night wondering, 'why my child'? Cancer is a cruel disease, it twists the knife, it makes you suffer and I hate it with so much passion it's probably not healthy. David, Derry, Scott and I have walked the halls at the hospitals, we talk to the patients and the parents, we see how it ravages the body and the mind, and the thing is, its not for weeks, or months, this torture can go on for years, and still the dreaded 'r' word hangs above all our heads even years after the cancer has "gone". Then there are the side effects, the long term and late effects thrown in for good measure.
Och well, cheery reading huh?! Be grateful I edited out how I REALLY feel.


christine said...

Steph - I'm so sorry you're so down today - I guess looking at the internet for info is not always a good thing to do. I know it's a cliche but I think you are only able to take one day at a time. Even though Scott's counts were not good today and he couldn't get his chemo, at least he got to see his friend and the excitement of the cameras and hold the dog - it's a wonder he still likes dogs after the bite incident isn't it?. And muscle soreness from roller blading means at least he's getting active again - and like you, I'm having to believe that is what caused the pain.
Keep strong and try to see the positives -even if they are small.
Hope you got some sleep.
love as always


christine said...

And where did the lines at the top of the blog come from - 'beware the jabberwack' - sounds familiar but yet unknpwn. And have you only recently put those lines up or have I just not seen them.

Staci said...

Stephanie, I just finished reading this entry and my heart aches for you all. I am so sorry that you were experiencing such a down time.

I bet the roller blading caused the sore muscles and I bet Scott loved every minute of it! I hope that Scott's legs feel much better today.

You are all in our thoughts and prayers daily.

Hugs from Maine!

Lorna said...

hey steph - what can i say - thinking of you - and yeah, stay strong - you gotta be a tough bitch in this fight. xxx

Laura said...

Hi Stephanie, I hope Scott is feeling better tonight and that there was some peace of mind for you - maybe the cats are back to acting aloof around Scott now. :) I sure love seeing those pictures of Scott on the baldes. I'm sure it could make his legs sore, but you can see the expression on his face - he loves it. :)
I'll have to check out the site you mentioned in another blog about bone marrow. Thanks for sharing. Goor thoughts and feelings or not, this is a great place to let it out. Any emotion you are feeling is right and there is nothing wrong with being down sometimes. I'm thinking fo you and sending hugs.
Angel Laura

nina said...

I don't know how you don't feel like screaming through the streets for a magic cure for your baby. I would. Then again, maybe you do. Hang on. That's all I am able to say. Just hang on.
Your strength, gives Scott strength to fight. From what you have written, you are doing everything right and nothing wrong.
You have my solidarity as a mom,woman,sister,friend.