Friday, June 10, 2011

Kind of another stressful day today. I think the emotions were higher then yesterday, being things are kind of sinking in. For me anyways... Not something I think I will ever really get used to. I don't want to let myself. It was hard to find the positive at times today that's for sure.
Think I'm still almost numb to this whole situation. I have meds to give, we need to monitor him to check for all kinds of symptoms that can be allergic reactions to the meds or even the chemo. I just feel overwhelmed and still a little angry I think. It just shouldn't be happening. My son shouldn't be on chemo, its just not fair!!
Grayson wasn't himself today so that made things worse. He was really tired and didn't smile and play like he usually does. He seemed like he was still in pain a bit so, even though i don't want him on the pain meds much, he needed them today again. The area where the port is seems to look much better then it did last night. Its bled a little but nothing too bad. The oncologist did call this evening and I asked her about it and she said that we need to keep an eye on it but sounds like its normal for a little bleeding. She wanted to make sure his appetite hadn't already decreased and I really don't think it has. Hes sleeping more so in a way eating less, but not a loss in the actual appetite. The oncologist said that most likely he is just still in a little pain from the placement of the port, and hopefully he wont be like this after each treatment. I really hope he doesn't get sick each time :(
I do like that they seem to keep in close touch with us (the oncologist). Just things are a little crazy around here now. I feel like now that he started chemo, we live a new life. Jesse's days off work are now not days to go do family things, they are days for doctor appointments. And now that the longer Grayson is on chemo, the more prone to illness he will be, I feel like i need to set up some kind of area right when you come into the house for people to scrub themselves down lol. Have sanitizers and all that fun stuff! I want to go through the house and completely declutter things and just make life as simple as i possibly can! Just need to find the motivation for such things hah!
Also we are going to be setting up a trust fund for Grayson. When this is ready we will let you know all the details :) We were advised to set up a caring bridge site but I'm not sure if I will do that or just keep the blog.
And also the nurse said that most people set up a list of things they will need and people can mail them (ex. Clorox wipes) this something we should do?
Well enough for mind is spinning like crazy and I'm still out of it I think. Running on empty :(


  1. I have never met you but I read your blog. I just ran across it one day and I was so amazed at how strong you are. I admire you. I am mom and I cannot imagine what you are feeling or how heavy your heart must be at times. I just had to tell you though that you are a truly amazing person. You have such a beautiful family and every time I pray, I pray for y'all!

    In Christ,

  2. Hi Jessica, I've not met you but feel the heart ache as a mother. We are rooting for you all and doing all we can to pull together this comedy benefit on July 17 at the Joke Joint Comedy Club

  3. I say go with the list. If people wanna help you out, they will, It never hurts. And it is for the health of Grayson in his recovery to beating this. Hell, I will send you Clorox wipes and hand sanitizer!!!! I agree, anyone wants to come down there, NOT IF YOU HAVE BEEN SICK in the last I dont know how many weeks LOL. And DEFINITELY be hand washing and sanitizer.

    You have every right to be angry and numb. Those are the emotions you need to feel, even when you don't want to.

    I think the Caring Bridge site might be a good idea hon. You might come across other parents going thru the same things, and it can be great support for you to find people like that. Has the hospital mentioned anything about other parents like this? Have you seen other parents at that part of the clinic? I would think other parents going thru the same thing would be SUPER support, since they know how you feel and been thru it with their kids and can help you to ease things for Grayson and for your family.

    Lots of love to you guys Jess, praying super hard as ever for you all.

    Love & Hugs,