I can't tell you how tired I am of these monsters....sure you're sick of me bitching about it...but you need to read this. Tonight I went with Ethan to visit Jake and Kait at Egleston....everything was okay while we visited. On the way out the room across the hall I could hear the child in there SCREAMING in pain....screaming for someone to help him (he is 10 years old)....Kait said he had been ...pretty much vomiting since they got there Thursday afternoon. We stopped and said hi to Colton (another Ewings fighter) and his wonderful parents Scott and Kristi. He has been in the hospital for over a week now with a blood infection and it in ICU (sedated and on a ventilator). He just got moved to the oncology wing today. He pretty much spent his birthday half sedated, and is currently just trying to keep his head up and hold things in his stomach.
We can't sit back and just "like" statuses and pray....we have to do something. We can help end this cycle of pain. We can stop these kids' suffering....there has to be a better way. They are being treated with drugs that originated when Nixon was in office. Do you realize how insane it is that in a society where technology is moving at the speed of light that we HAVE ONLY ONE NEW DRUG to show for the past 25 years of research in pediatric cancers?
I want to scream sometimes...and get angry as f**k...tonight it took everything in my soul to not cry my eyes out when I got to the car...but I didn't want Ethan to see me like that. It's hard enough to know that he heard and saw the same things that I did tonight...and he's old enough to understand that it wasn't normal.
Why is this normal for treatment of these diseases....why do we accept these barbaric treatments for our children? Why is it okay to inject our kids with drugs that originated as parts of mustard gas (see origins of Doxorubicin)?
CHILDHOOD CANCER ISN'T CUTE BALD KIDS HOLDING BALLOONS....
I'm so angry right now.....
We can't sit back and just "like" statuses and pray....we have to do something. We can help end this cycle of pain. We can stop these kids' suffering....there has to be a better way. They are being treated with drugs that originated when Nixon was in office. Do you realize how insane it is that in a society where technology is moving at the speed of light that we HAVE ONLY ONE NEW DRUG to show for the past 25 years of research in pediatric cancers?
I want to scream sometimes...and get angry as f**k...tonight it took everything in my soul to not cry my eyes out when I got to the car...but I didn't want Ethan to see me like that. It's hard enough to know that he heard and saw the same things that I did tonight...and he's old enough to understand that it wasn't normal.
Why is this normal for treatment of these diseases....why do we accept these barbaric treatments for our children? Why is it okay to inject our kids with drugs that originated as parts of mustard gas (see origins of Doxorubicin)?
CHILDHOOD CANCER ISN'T CUTE BALD KIDS HOLDING BALLOONS....
I'm so angry right now.....
From Kait: I am so glad that this is the last night of Jake's 5-day chemo. 5 days is a long time to hear sounds of crying, throwing up, screaming, and pain- and they aren't even coming from my kid! I am so thankful that this time Jake is only crying is when he has to drink his medicine. Of course he will cry in pain and fear when it is time to de-access his port tomorrow. If all goes as planned Jake will only have his port accessed two more times...EVER! I can't wait for Jake's healing to be complete. Then maybe Randy and I can start healing our hearts from the agony we have been living for the past 10 months.
We are watching a lot of movies, going to the playroom, and visiting the gift shop to pass the time and he is in a pretty good mood. He keeps asking when Thanksgiving is because that is tentatively when he will be cleared to start walking again. He says he is tired of crawling and doesn't like hopping on his walker because he isn't fast enough to play with his brother. We are asking for prayers to keep the cancer away and specifically for complete healing in his leg so that he can walk in November. We know there is a chance that it won't heal like it needs to, but we are remaining optimistic. Jake says "hi!"
Randy is right....there need to be better treatments. What is the problem? Not enough awareness? Interest? Money? Politics? Are those things in place, yet new substances have not been found? I am so glad that Randy has really let us all know about the side of this that we do not experience. He is right, we need to know. We need to learn more. We need to know the roadblocks that must be hurdled. I feel there need to be more prayers, those focused on cures, dedicated scientists, and findings, not solely for individuals we love.
ReplyDeleteGood questions, and it's a combination of all of those. The awareness is low because of how uncomfortable of a topic it is. All too often people want to pass childhood cancer off as rare and that it's just really bad luck. The money part goes along with awareness and politics. Childhood cancer isn't seen as common, so politicians don't perceive getting any votes from pushing the issue. I think as a community childhood cancer has to keep pushing 2 myths away...that this is rare and "cute".
ReplyDeleteI wonder at least, why isn't there any great stuff for pain control. I don't know if I could put my child thru chemo. That scares the daylights out of me, but then could I take the chance my child will due soon or sooner if I didn't. The pain thing.. I do not like what I am going to say, but would marijuana really work if it was medically legal? I do not smoke it lol. My father in law hurts every day, he said he'd try it if it was legal, because of the extreme pain he has. If they can put poison into a body, I wonder... Never heard of anyone dying from a pot over- dose. Just a thought I've wondered about.
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