Beads of Courage

The beads of courage program is a neat program that helps critcally ill kids keep track of all they go through during treatment. Its increasingly hard to keep track of how many things she has gone through. Just how many infusions, pokes ,drugs, doc visits, lumbar punctures, biopsies, hospital stays, transfusions, and so on. These beads help the kids remember and be able to tell their stories.

I was very intrested in the program as G is so young, I'm sure that this will all have a significant impact on her always, but the details might get fuzzy. This bead chain will help us tell her her story. She and I got all the beads collected this week and strung them this afternoon. They are averaged sized "pony" sized beads for the most part along with 6 slightly larger beads that spell out her name. When put together on the string, the bead chain is already nearly as tall as she is. Its incredible to think how long it will be when we are through all of this.

Check out this website if your interested in more information:

http://www.beadsofcourage.net/

There are days.....

when an apple makes the perfect snack....and apple and a tall glass of ice water.


Then there are days when a bag of chocolate drizzled caramel corn and a diet c o k e is the only thing that will work. Today was that kind of day. I feel better too, go figure.

Its that time of year...

Its the November challenge, can you write in your blog every day for a month? It would seem unlikely this year, BUT as I like traditions, and have given up nearly all of them this year (I didn't make one thing with apples this year, and didn't notice until October! So not me.) I think I'd like to see if I can swing this one.

Today is the first day of November, and so often it is super cold and icky out by now. This year however it has been so nice. Like go for a walk outside and not freeze nice. Weird for MN. Today however, I am at the RMH as G has medical appts galore this week. I was looking forward to coming so we could play and have fun, but it would appear that is not to be the case. She is coughing up a storm, almost nonstop, and I just got done cleaning up everything I convinced her to eat today (thank goodness the RMH also has washing machines at our disposal) I'm not sure what to do, I can't really give her anything. She's trying to nap. I'm worried, I want to fix it. I want her to at least enjoy the things here before we have to go back to doctors. I'm wondering if she is going to get sicker and we will have to go even earlier to the doctors. I'm trying hard to remain positive, but I'd like to catch a break here soon. Please?

Happy Halloween

I should be packing up and getting ready for G and myself to head back to the Ronald Mc House we are staying at while she gets her many treatments in the upcoming week. But I'm not. DH is sleeping/watching football. G is asleep on his lap. S is singing along to music on my ipod next to me. H fell asleep while doing her required 35 min or reading for school (this could be why it takes a weekend). J is working on his tree fort. Sometimes you just need to freeze a moment and what better place.

Soon I will need to finish the laundry and start dressing kids up. G and I will go with DH and the big girls to do some trick or treating before we leave town and start another week.

I think we'll turn the pumpkin that never got carved into a turkey.

Here's another reason my blog is neglected....

Another wild week

Its Friday, and when I think about the whirlwind of things that have occured this week it makes me dizzy! I sure hope things slow down soon. All day today I've had this sorta itchy feeling like mosquito bites, but I don't have any bites in the places that sorta itch. Its an odd feeling and either I have an odd disease or the stress levels are a little to high. Or something. I sure hope it goes away soon.

OK, so, whats going on.

Mother guilt over not being as plugged in as I might have been with child who started middle school. Midterm is approaching, and he's had some things not turned in. Its just a huge adjustment and he's had to figure out a lot of it on his own. I feel bad, he says its fine. Growing up is painful sometimes.

This prompted a more in depth check in with the 5th grader. She claims life is fine and she doesn't feel neglected. Life is good, she better not be lying! ;0

The kindergarten gal is doing well. She is back to loving school, this can vary day to day based on the outcome of gym class. She got to cut more this week, and color less. Her birthday party invites went out. Life is good! AND she was diagnosed with asthma. Of course she was. We've got the meds and supplies. Its not super severe, just another thing to monitor.

The preschooler has completed phase one of her Leukemia treatment. Phase two is going to be beastly. LOTS of trips to the hospital. I'm already very tired of the drive, and am determined to figure out how to make it in the 2 hours everyone says it takes. So much traffic!

The dog continues on. She is officially 14.5 years old this week. Reasonably good heatlh, we are amazed she keeps going!

The husband has had a crazy week with work. So many things going on there to, it is a struggle for him to balance it all. But so far he's doing it.

I did some chasing my tail today. Spent way to much time on the phone coordinating doctor appointments for next week. I wish I could just deep clean my entire house. I need to get everyone out of it, and just SCRUB. I think that having that done might make my scrambled insides feel, well, less scrambled. But, its not going to happen probably. Must keep going.

Hello? Hello?

Friends prompted me to change the ol blog lay out today. Thank you. Looks more fallish now don't you think?

I didn't even look to see exactly when I last wrote here, but its been awhile. School has started. My son started mid school. He likes it, class changing every 45 minutes its awesome Mom,and the day goes by so fast. I hope his report card reflects positively on things as well. H started 5th grad with a hop and a jump, until she got going. She's got a tough teacher this year which she got a little bucky about, but overall is going to be good for her I think. S started kindergarten. Of the kids I've sent to school so far, she has been the easiest. She is such an old 5 year old. Her bday is next week, I'm pretty sure she is planning to just skip ahead to 12.

Most people by now know that at the beginning of September my youngest was diagnosed with Leukemia. We have a caring bridge website set up to keep people updated with what is what with her and that. Today we marked the 29th day of the induction phase of treatment. It seems monumental, and it has been, but this is the shortest of the phase. So, so much to go through yet, BUT this phase is marked off, completed and goals met.

Today I showed some promise of sticking my neck more fully into the game of life I think. Overall the other kids have gotten what they needed. We have had a tremendous support system. Fantastic, wonderful, fabulous. We are continually awed by it all. I made some appointments for the other kiddos though and am proud of myself. At the start of diagnosis, it was half a day at a time, then day at a time. the last two weeks I made strides at looking at life a week at a time. Today, today I made an appointment for NEXT week! I know! Cool huh? baby steps here. ;)

I hope to get back to blogging as a means of having a place to remmeber stuff about the rest of life, while we deal with finding our new normal. When I set out to write this post, I wanted to say: No Leukemia talk here. However, thats probably not all that practical. Its already been interesting to watch people not talk about the elephant in the room with its trunk wrapped around your their shoulders. We are officially "the family with the cancer kid". Now, we are attempting to find a new normal that includes having cancer as part of normal, while trying to maintain some thing that is/was normal, if that makes any sense at all. So basically, its bound to come up! :D

Anyway. Happy October peeps!