Advice/Help on setting up blog for my mom???

[rph]

This year has been a series of ups and downs for me and my family...lots of challenges which have required a lot of attention and effort. I thought it couldn't get worse...or harder...and just kept working away and trying to get past the issues and back on stable ground.

I'd made some progress and decided to take a week out and visit my family. I was looking forward to some downtime, but...as with everything else lately...it was not to be...

Things suddenly got worse...for my whole family...

My mom broke down when I told her I was headed home. She told me she needed me. She told me she was sick. I went into overdrive and headed home, where I spent three days running in and out of labs and hospitals and offices with her.

On Thursday, October 18th, we sat down in an office for the results and heard what we dreaded most..."It's leukemia..."

The hardest thing for me was seeing the look on my mom's face when the doctor said those words. I've spent my whole life learning to fight and protect the people and things I care about...but this time...the fight is hers...and I can only stand and support her.

Now I've moved her to Texas and I'm sitting in her room at MD Anderson, waiting for them to take her into isolation. I am the only family she has here, so I'm the contact point for everyone else. The trick is that I work at night, sleep in the day, and spend as much time as I can with her. I can't possibly answer the phone every time it rings, and it's ringing a lot.

The chemo has left her wiped out and semi-conscious for most of the day and all she wants to do is rest. That's hard for her, given the constant checkups from the staff and the near-constant phone calls. My mother loves her family and has lots of friends, throughout the US. She wants to maintain contact with all of them, even though she's so sick and exhausted that she's in tears.

I began to organize a "message tree", using 5-6 primary contacts who could spread the word to each of the circles of friends and family. There are still those that want to call and get the information direct from me or her, though, which means that the phone keeps ringing.

She needs the contact, for support and motivation, but there's got to be a better way. I finally suggested that we could try to set up a blog, or some sort of message board, so that folks could get the updates online and communicate with her there, so she wouldn't feel that she has to keep the phone right beside her. She seemed to like the idea and agreed that, if we did that, she wouldn't feel so bad about just turning the phone off when she needed to rest.

The thing is...I have no idea how to do that or where to go. I know some of you have some great blogs that I enjoy reading whenever I have the time, so I thought maybe someone here could give me some advice and point me in the right direction.

I can sure use the help, if anyone has some ideas!

[Davidtxs]

pm sent

[janetg]

you could always set her up with google's blogger, or wordpress.com now has some free services as well - all hosted on their servers.

prayers go out to your mom AND you...keep the faith!

[rph]

Originally Posted by Davidtxs

pm sent

Thanks for the prayers and the help. David, I'm sending you a PM with that info.

[Paulo]

Paul. I wish you and your family the best of luck. If you have any questions, I'm available to assist as well. Feel free to PM me anytime. I just set one up recently.

[rph]

Thanks, Paulo! David got some info from me earlier and said he's setting one up for us, so things are progressing. I really appreciate the help and am sure I'll need a lot more.

She's hoping to be able to put up daily updates and add some pic's for the grandkids. She says one of her worst fears is that the babies won't recognize her without hair. Hearing that they (the young ones) wouldn't be able to see her at all until she leaves isolation really upset her. She's afraid she'll go home for a few days to visit and they'll be scared of her.

I picked up a webcam for her and installed Live Messenger so she could make webcam calls to them and "see" them that way. She can also shoot pictures of herself to post. After I explained how it worked and ran it for her, she was pretty excited. She lives for her grandkids...

The worst is watching her move through the steps, day by day, and feeling like there's nothing I can do. I've been shooting pictures of her, showing them to her, trying to keep her laughing, and reminding her that this will pass and she'll be able to look back on it all.
Sometimes it helps and sometimes nothing helps. The nausea is getting to her right now.

I just took her downstairs to the beauty salon. Several people here have suggested that she have her head shaved before she goes into isolation and she decided that would be best. I joked with her the whole time and the ladies volunteering there were great, so she laughed a lot, but I know it was hard on her. It was hard for me to keep it under control, so I can only imagine how she felt.

She's facing it all with a fighter/survivor mentality and I think that makes all the difference in the world. It may hurt. It may be scary. It may be hard. But it exists and it must be faced. It's not easy for her, but she's taking it in stride and working through it. I'm proud of her courage, though I wish it wasn't necessary.

[carrbowl]

Hey Paul, I live on the northeast side, takes me less than 30 minutes to get downtown. Let me know if what I can do to help. Can I go sit with her for a couple hours during the day??? I'll do anything...just let me know. My kids are in school during the day, so that is really the best time for me.

[JamesB]

My thoughts are with you. I know this is a rough time for you. I spent many nights in the hopsital and nursing home with my father over the last 2 years.

James

[rph]

Thanks, both of you! Renae, that is SO generous of you! I can't tell you how much I appreciate it! For now, she's been so tired and sick that they're trying to hold the visits down (I'm trying to check in with her by phone in the morning and then see her once a day when I'm headed to work), but I'll let you know when things improve a bit. She'd enjoy making a new friend!

Right now, she's in isolation. I'm the only family here, but some of the others will be visiting this weekend. To see her, we have to wear booties, work through their "containment" area, sterilize our hands, and go into her visitation room 1 or 2 at a time. The visitation room is basically a small room, attached to hers, with a window and phone, so we can talk to her.

Until Wednesday morning, I was with her, so I shot some pictures and did what I could to help her and cheer her up. Now, she's started physical therapy and they're moving her through the day. She's still weak, needs a lot of rest, and is having trouble with food.

I went ahead, using information David sent me, and set up a blog for her at http://thememeblog.blogspot.com/.

The grandkids all call her "Me-Me", so I went with that. The posts there are by me, for now, but we're hoping that she'll have the energy to start posting herself, soon. As weak as she is now, it just hasn't happened yet. She just tells me what she'd like to say or what's on her mind, and I include that with my own observations. Some of the family is starting to look through it now, so they're getting updated info without having to call in every day, which I think will help her rest a bit more. There are still folks that haven't heard and are finding out when they call to check on her, which seems to result in her having to console them.

I appreciate the support from you guys! I haven't gotten as involved in this community as much as I'd like to, yet, mostly due to other things I've been dealing with before this came up, but I will over time. For now, spending time here, enjoying people's pictures, and learning have helped me to take my mind off it all for a bit and help prepare for the rest of the day.

[laanba]

I see that you have already set up a blog, but you might want to look at CareFlash as well ( https://www.careflash.com/ ). It is a new company, based here in Houston, that is for exactly this purpose. It is built for people fighting illnesses and their loved ones to have an environment to communicate and support one another. I wrote to the CEO because I think it is such a wonderful idea. I have a friend that was diagnosed with Leukemia (AML) over the summer and I've been trying to get him to set up a blog to keep everyone updated.

Best wishes to your mother and your entire family during this difficult time. Keep us updated.

[Dobick]

Paul,
I wish I knew some words to say...

I'm horrible at that, so I will just say that my thoughts and prayers are with you and your entire family during this time!

[rph]

Thanks! The prayers are what she's asked for most. She was telling me the other day that a friend from years back called her out of the blue and surprised her. Apparently, he'd moved away, to another state, and was shocked to hear someone request prayer at his church for her. Somehow, between the church connections, her request for prayer had spanned the distance. She was amazed...

I spent some time with her last night and she's doing a bit better. They've taken another tack in their approach to her nausea and it's working. When I got there, she was eating chicken tenders. Seeing that was very encouraging. She told me she'd seen a commercial with chicken tenders on TV (so she's been up watching TV...good sign...) and decided that she wanted some. I also noticed that she'd started unpacking and organizing her room, putting out little gifts from family and friends and organizing her stuff.

She was also a bit more spry last night, and a bit tipsy from the new stuff. Signs of improvement and very encouraging!

I'm going to check out the careflash site when I can get home and have some time to give it undistracted attention. That might be useful for some of the family. My mom's diagnosis is also AML, though they're still working to determine the type. Hopefully, she's going into remission!

[laanba]

My friend is also being treated at MD Anderson. One thing I take comfort in is that he (and your mom) are getting the best treatment possible.

[rph]

That place is phenomenal! I told a relative it's like Disney for cancer patients, in that it caters to the patients so much. My mom was understandably nervous on the first day, since she's a country girl, nervous in the city, and was experiencing something so terrible in such an unfamiliar environment. However, she was greeted at the door, directed to the information desk, given exactly the information she needed, along with some extras to make things go more smoothly, and went straight to the clinic where they got things moving with little delay.

While I was waiting there, a lady from the Leukemia and Lymphoma Society approached me to tell me about assistance from them. She then spoke with my mom and gave her the forms to participate in their program.

Anytime she moved around to complete tests, she was led there by a worker or volunteer, and the tests were run back-to-back to take care of everything quickly. Within a day, they'd done what took a week back home and she was ready to get started.

As a nurse, she was also reassured because the things that are "big" procedures back home are routine things here, done by people with tons of experience.

There have been a few slipups along the way, as there always will be, but it's clear that the folks at MDACC are light years ahead of anything she's ever seen. That really adds to her confidence during all of this. I'm glad that both of them are getting their treatment in that environment.

[Ahh!]

Prayers from Frisco, too!