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Radiation therapy prep

I got up at 5:30am. C got up at 5. We went to the hospital. Little T went under. I worry a lot when Little T is anesthetized. More so than when he gets chemo. I can see him he gets chemo. He screams because he hates being held down, hates being stuck with a needle, but I can see him. I know he's still alive. But when he goes under, I don't know if he's alive. I have this primal fear he'll never wake up. I've been put to sleep once. I hated that feeling, of losing time. I felt horribly disoriented after I woke up like my brain had been scrambled a bit. I think Little T feels the same way. He often wakes up crying. I worry a bit if we're damaging his brain with all this anesthesia. This makes the ninth time he's gone under. All these procedures require him to be anethetized.

I know this may sound silly in the long list of things I have to worry about, but this is what happened today. And honestly sometimes I worry about smaller medical things, because the bigger things are just too big to worry about. I need to get through the day, this day. And to be honest, worrying about the small things often affects his well-being. I made damn sure they were going to keep that IV in him and did a blood draw while he was asleep. I keep track of lots of small things like who the best nurses are to give him IVs.

They did a CT scan to prep him for radiation therapy. They put two tiny tatoos on his skin. They made such a big deal about it, I thought they'd be bigger, but the tattoos are a bit bigger than this .

Then we went over to Hemo and got his lab results. We were dreading the results, because we thought his numbers had dropped and he'd need another dose of Vincristine. But his Hemo doctor came in with 'I've got a secret!' face. His numbers were the best they've ever been -- 207 platelets and 260 fibrinogen. Wow!

So we're back to whether or not to give him radiation therapy or not. I insisted on drawing a pen around the tumor on his shoulder since his hemotologist says it's growing there and I don't think it is. We'll see what happens on Tuesday.

Comments

( 8 notes — Leave a note )
poets_hand
Mar. 22nd, 2006 11:49 pm (UTC)
(((hugs)))

I hope all goes well either way.
(Anonymous)
Mar. 23rd, 2006 05:18 am (UTC)
sending you and little T and the family strength and comfort
I'm so sorry. That sounds so incredibly hard and the issue of having him go under and fears of him not coming back is so immediately, viscerally intelligible.

I'm on livejournal under other names, mostly abandoned at the moment, but you knew me as Lyonesse I think in the back smoker or otherwise LP of '93.

I'll put you in my mental ambient good light and prayer list. I hope you receive comfort, and he, and that you have good things and people to strengthen you.

with lots of love,

LP
waterowl
Mar. 26th, 2006 06:30 am (UTC)
Re: sending you and little T and the family strength and comfort
Hi Lyonesee! Thanks for the vibes! Great to hear from you, though I wish I had better news. If you start livejournaling again, please do friend me and I'll friend you back.
giandujabird
Mar. 23rd, 2006 06:08 am (UTC)
/me sends Comfort Vibes in your direction...
(Anonymous)
Mar. 25th, 2006 09:04 pm (UTC)
Hello

Our son is fourteen months old. A year ago this week he was diagnosed as having Kasabach Merritt Syndrome. It has been a long and difficult road over the last twelve months.

Thank you for writing your blog. Like you, the first thing we discovered about KMS is that it is extremely rare and there is very little information about it. We have been put in touch with one other family in the UK whose son is nearly the same age as ours and has KMS - it was a great comfort to speak to them and to share our experiences.

It has been an emotional experience reading your blog and we have both shed a few tears. So many things you have said have struck a chord with us. Reading somebody else's diary of living with KMS has reminded us how difficult life has been at times.

We wish you and your family well and your son all the best with his treatment.
waterowl
Mar. 26th, 2006 06:28 am (UTC)
I'm so sorry your son also has KMS, though I'm really glad to hear from other parents with the same condition, especially with a son of similar age. I talked to a mum with a daughter now twelve who had KMS. She had radiation therapy and it did shrink the tumor, but it also caused joint problems and bone growth issues, though she didn't have her radiation therapy done at a children's hospital. How is your son doing? Please feel free to comment here or email. My email is in my profile.
(Anonymous)
Mar. 27th, 2006 07:49 pm (UTC)
KMS
Hi - we could not find your e-mail in your profile but I think you have ours - if so please feel free to send us an e-mail and we'll reply to that. Sorry, blogging is very new to us!

waterowl
Mar. 28th, 2006 09:20 pm (UTC)
Re: KMS
I'm sorry, but you're commenting as Anonmyous, so I have no idea who you are or how to reach you. My email is waterowl@livejournal.com Please do email me.
( 8 notes — Leave a note )