One day at a time... Really hour by hour

The days and weeks keep getting tougher and tougher. We are truly getting by because of the graciousness of others...between food, gift cards, monetary donations and volunteers to 'watch' Todd while I'm at work.

In the past week, Todd has declined even more. He looks 'sick' and so miserable. He can only feed himself if it is a finger food and after a few bites he is tired. Someone ends up feeding him. :( If it is anything but finger foods, then he needs to be fed. He struggles to sit up for any amount of and fights with whomever when we tell him to sit up...he's not being ugly just a bit snarly. After a few minutes of sitting up, he resorts back down to the laying position. I'm a bit scared of aspiration pneumonia so I will continue to make him sit up... and I know others are doing the same in my absence. His skin is so bruised and sore... just the slightest touch and he says "Ouch." He can't go to the bathroom unassisted and he's had several accidents... Every now and then he can pee on his own safely. Lastly and no surprise, he's speech is still slurred, his vision comes and goes and his hand/eye is horrible. If you have tried to text him or email him, he is unable to respond. I typically check his phone every night for unanswered texts.

We really are a pitiful household right now... He's still confident that the next chemo will work and that there is nothing for me and Ty to worry about! Needless to say, I still worry. I am in full worry mode all day, every day. I am doing EVERYTHING I can to keep my family afloat and every now and then I feel like I am being judged. I know... I know... I know that this is me being a bit sensitive. So, I will not take any thing personal and keep on trucking along. :)

We've had some issues with the home health agency so I have been dealing with that mess the past few days... They decided to stop treatment due to his decline in health. I spoke with Tiffany, the NP and she thinks they need to keep doing 'something' so atrophy doesn't set in. I also had a lengthy conversation with her on his condition. She offered to have the scan moved to tomorrow which I took her up on it vs March 8th. She even told me that they would review the scan tomorrow afternoon and call be once they looked at it.... Whew, I don't have to wait over the weekend. I am realistic in what I am more than likely going to be told however it doesn't hurt to have a bit of HOPE!!!

Let's talk about Ty... I have been so impressed by him helping out. He has gone wayyyy above and beyond what any 11 year old should have to do. He helps with bathroom duties, getting food ready, giving insulin and anything else Todd or I need. I know this is way more than any 11 yr old should be doing however I am so proud of him for helping out!!! He is now seeing the counselor every week. She said he is starting to open up about his concerns and fears. I am thankful that he has an outlet. He did tell me this week that his biggest concern was if we were going to have to move if Todd wasn't with us... I reassured him that we will not have to move and if that was his biggest concern then he doesn't have to worry.

I think that's about the highlights of the last few days. I've had excellent volunteers this week- buddy Amy, neighbor buddy Jenn and Brian, both of our moms, brother Greg, Todd's friend Ray and neighbor buddy Kim.

Ohhh, speaking of Kim (I knew I wasn't done)... Kim is a neighbor buddy who happens to be an Oncology nurse. She has volunteered her time however I knew I needed to 'hire' someone for PT help. I offered it to her and asked her to do it AND allow me to pay her because if she only does volunteering, I would still be hiring someone. She has agreed and we will meet this weekend to discuss details. I am so excited because Todd will be pretty comfortable with her and I know she will truly do her best in taking care of him. She is going to do 12-15 hours a week so this will help me and all my volunteers out sooooo much! Thanks Kim.. it means so much to us! :)

I have a few special requests of extra prayers...

• My Brain Tumor Buddy, Sheri... They were in and out of the ER last week 3 times. Josh was having horrible headaches and at times he was unable to form sentences. They've moved his meds around and he seems to be having a good rest of the week. As Sheri and I joke.. we have a few good days then BAM, something comes up. Brain Cancer is a funny beast
• Prayers to the Edenfield Family-Tiffany and Ken are my friends/neighbors and Kara and her son Cooper are long lost Gap friends. Kens brother, Kara's ex-husband and Coopers father passed away last night. This was unexpected..Please say an extra prayer for them during this difficult time.

Thanks all... will update when I know more about the scan tomorrow night. I am sure I am leaving someone out but please know its not intentional.

The Clan