Out came the port.

Gratitude!!!

Here is a picture of Josie taken back in August of this year. When I look back at her swollen face, hairless eyebrows, lashes and head. I am so thankful we are far from that now. She is doing so well. She is working so hard in speech, occupational and physical therapy. We are so proud of her. Today she had a surgery to remove her port-a-cath. At the hospital she was wheeled away in a little bed awake. She just laid down, kissed us goodbye and didn't even cry. As they took her away from us, I thought wow Josie has been schooled in hospitals and procedures. She went willingly unlike the rest of the kids who were crying as they were taken from their parents. What a long year. Glad to have the port out. She has had it since February 6th. Wow! Yippee. One more big step towards recovery. She is still doing chemo everyday but is such a good little girl. Josie watches the clock and tells me when she can eat again. (She understands she has to fast everyday) She never complains. Her best friend is Lilly and she cannot wait for her to get home from school. We have so much gratitude in our hearts for where she is at in this point of the therapy. Happy Day.

No title needed

I know the picture quality sucks, but for those of you who've never seen the "angry Josie" this picture says it all. No verbal threats at this point, but the eyebrows make her stance on being photographed pretty clear. Anyway, this photo just made me laugh and I had to post it.

Forward to remission

Have you ever felt worried or afraid? This year has been a terrible year full of enormous fear for me. So huge and underlying in the back of my head that it never never goes away. I truly now know what anguish is. Anguish is when one realizes the unpredictability of the future and how his or her actions may have no affect on this future. For me this concept was not made clear until my child was right at deaths door. It is not remarkable that at this scene you then can feel perfectly what true anguish is. The idea of doing everything I could possible do to take care of my child and knowing that I could not control the outcome has been a horrible life lesson. But it has been a lesson and I am working on being a good student. I have learned a lot. I can still make myself do many many things in hopes for the best. I can find happiness in the smallest smile, littlest hug, and softest kiss. I can still keep going in the dark. I know God listens to us and can lead us. I can make my child do terrible things and take terrible medicine in hopes that the future will be bright. I can watch someone really suffer and not run away. I can hold myself together. I still can laugh. I still can cry even though its seems like there should be no tears left. I can still look to the future with hope.

Speaking of Hope. Josie just made it through honestly the most terrible 7 months of her life and mine too. We are so happy!!! It is time to celebrate. We are on to maintenance chemo. She will take 6mp (chemo) every night until April 16 2011. She will continue to do steroids, spinals, and other chemo's on specific dates in the hospital in a repeated 12 week cycle over and over the next 19 months. We won't know if what we did worked for many years. Actually it is 5 years to "cure." They just sort of said good luck -she survived the hard stuff-if the symptoms return we will reevaluate the therapy. You feel sort of let down and a weird sense of relief/fear. So "Hurray" as Josie says when something good happens and a great big wish all is clear till we reach April 16 2011. At that time it will be considered remission. Go Josie Go !!!!!! You can make it to remission-April 16 2011 here we come.

Happy 7th Anniversary

i wanna get serious right away
1-2, i got a crush on you
what you doin' today or any other day?
1-2, i got a crush on you
just one look and i go insane
1-2, i got a crush on you

i got a crush on you

1-2, i got a crush on you
1-2, i got a crush on you
1-2, i got a crush on you
i said 1-2
i got a crush on you

http://www.youtube.com/watch?v=pwP2UDdHB7c&NR=1
Just in case you wanted to hear it.

Lead, Kindly Light

"Lead, Kindly Light, amidst th'encircling gloom,
Lead Thou me on!
The night is dark, and I am far from home,
Lead Thou me on!
Keep Thou my feet; I do not ask to see
The distant scene; one step enough for me."

We are hanging ON!!!!!!!!!!

Make Do or Do without!

That's our Lilly! Dave and I found her asleep in her bed just like this! She is pretty wonderful! Who needs a real sleeping mask! Goggles and a picnic napkin can just do about anything when they are in the hands of Lilly. Anyways-Which WWII mama coined that 'Make do or do without?"
I miss that silly kid very much. Lilly is the kind of kid who can use it up, wear you out, make you do, or do it out. She sometimes drives me bananas! She is everywhere, has a comment about everything, and wonders what you are going to do about it. "It" being everything! From the moment she wakes up she wants to know the plan or more clearly she tells you the plan. Sometimes I need a time out from her. She completely wears herself out everyday and snores loudly all night. She wears me out! Strangely she reminds me of someone I know. I am sure Dave feels the same way about me sometimes, especially when I hear him snoring at night.

This year has been a very strange year. I have a lot of guilt tied up into how I have mothered her. On the one hand I have one child who is very sick with Leukemia and really needs me. And, on the other I have another child who also needs me and I feel like I have completely ignored her. I have just sort of shoved her on the bus every morning with a bagel in her hand and ran a comb through her hair two seconds before we stepped out the door. I have waved from my car window as I have dropped her off at Icky Gooey Science Camp, gymnastics, and dance. Not that I don't fret, worry, and love her. But, sometimes it was all I could do this winter. Lilly did not get to be a kindergarten baby. I hope it all turns out OK, when I look back at my life of mothering. I hope both of my children don't remember too much of this nightmare.

We sent her to family for part of the summer to ensure she had some fun, and to help us with Josie's demanding chemo therapy. It is very strange to not have her around. It is lonely. Did I actually say that about my little whirl wind? This is the longest I have ever be away from her. I know she is having the time of her life with her grandparents and cousins but I feel very anxious. I was glad/torn for her to go because I was feeling a little overwhelmed with Josie and felt like it would be good for Lilly. But I really miss her. I guess make do or do without also works for me right now, in every aspect. A big thanks to those doing it for me right now with Lilly. I couldn't do it right now and I wish I could.

Button Button who has the button?

This is Josie's port aka "the button." She really guards this part of her body. We call it the button. Just the other day she realized the nurses were calling it a port and asked me if it was a port. It a was two day hospital week so we were there a lot. Picking up on the lingo-Smart kid. A port is a direct line implanted under her skin. Her blood work, organ testing, and some IV chemo's can be administrated through it. Normally, it looks like a raised water bottle lid underneath her skin. It is amazing how less complicated chemo days are because of this really cool device. It also saves her veins from being ruined.
Anyways, one day I got home from the hospital and realized that the iv needle was still attached. (Which means the port was still accessed) I know, how does some one get home with that attached? Well, if you live at the hospital things just go unnoticed. And, she wears clothes which covers it up. As you can see in the picture she had a tube coming out of her button. It totally freaked her out when I was changing her diaper and we both realized that it was still there. I live an hour away from the hospital-So my nurse meet me half way at the costco/tacobell/gas station parking lot and detached the iv and put heparin in her port to prevent any clotting. If anyone was watching; I am sure that was one very odd drug deal. A nurse with a mask on, pumping a syringe into a tiny tube that was coming out of a kids chest. Oh well, I was sure glad I didn't have to go all the way back to the hospital. I had left at 7:00 am and got home around 3:00 so going all the way back would have been exhausting. Especially when you feel like you live there any ways. Josie is one little trooper!!!!!!!!!!!!!!!!!!!!!!