Monday, October 4, 2010

A lot can change in a 4 days...

Yikes. Its been a rough last few days.  Its been hard to watch you go so rapidly down hill.  Truth be told...I hate it.

You are amazing how well you deal with how crappy you feel.  You have dark circles under your eyes, you're emotional, your HUNGRY, and your tired.  You want to play with friends, but dont feel well enough to play for more than an hour, and you're only playing quietly in your room.  Not riding bikes, or jumping on tramps.  Just Barbies, or books, or cartoons, or kitchen. Mostly books.

Dr Seuss was a genius!

"Read it one more time grandma!"
Ry came over and you had some fun. You were the doctor and Ry was your patient. She lay on your bed and let you "access her port" with all your new doctor stuff.  You followed all the right steps again and Ry was excited to have a port and tubey like "kall".  I am so grateful for your little friend Ry.  She has been a blessing from heaven to you and our family.  She is so patient with you when you are having a hard time, and you are both fiercely loyal to one another.  She just "gets" you and you seem to "get" her.  I know her friendship has been a good source of comfort and distraction to you these past few months. You two are amazing friends...its been fun to watch you grow up together. The other day I found you on your bed in tears cause you had gone to see if Ry was home and she wasnt. It was sad and sweet how sad you were.  You cried like you had a broken heart.

You have her plugged in and are
taking blood

Now its chemo time..
The steroid appetite has returned in full force.  Yesterday you had 5 pieces of "little toast" (sourdough bread toasted) just for breakfast and 3 for lunch.  Today you had a whopping 7 pieces of toast for breakfast!  Not to mention you have been through 3 bags of pepperonis in the last 4 days!!  Youre obsessed.  You follow me around saying "I sure love pepperonis mom, can i have more pepperonis please...just 4 more" so then I give you four and you say "i dont think that was 4 mom, I want more." I hate feeding you such garbage food, but the docs say to let you eat whatever you want because you wont eat anything once the steroid wears off. You only have 2 more days left.  Then it usually takes a week or 2 for the side effects to go away.  I have mixed feelings.  Your cheeks are puffier again, not as big as before, but bigger than the last few weeks for sure.  So is your belly.  

"Little toast"...your 10th piece in
one day!

Pepperonis...4 is never enough!

Add water, and its a complete meal
as far as you are concerened!
 You're so tired too.  You fall asleep a lot..probably taking 3 or 4 small naps a day.  Sometimes you just go lay on your bed and stare off into space.  I wonder what your thinking. When I ask you, you say you dont know.  I wish I did.  Id love to know whats going on in that little mind of yours.

Random nap...

Random nap #2

Random nap #3

Random nap #4
 Hair is everywhere. More and more comes out each day.  It seems like it gets worse by the minute. Today when we were in the shower I had to keep pulling hair off the drain cause it was keeeping the water from draining. Then when we did your hair we filled up the sink 3 times.  I had to keep cleaning out the brush and comb.  You told me in the shower you wanted me to straighten your hair. I told you that your hair might come out a lot if we did. Since you have beautiful curls we have to straighten your hair with a round brush, and I was afraid you'd be bald by the time we were done.  You had your heart set on it, and I couldnt say no. Today was probably the last time I'll get to straighten your hair for a few years...well, at least until its long enough to do it again.  You still have a lot in the back, but the top and sides are rapidly disappearing.  We had some errands today. Grandma DeSoto was with us, and since you couldnt go into any stores, me and grammy took turns waiting in the car while the other ran in. Me and you were waiting in the van while grammy was in the distribution center today.  It was kind of a rainy day and there was a breeze so we had the windows down.  You sat next to me in  the front seat and we played "I Spy".  Your cute sweater was covered with hair. You said, "heres some of my hair mom" and passed me a chunk.  We started pulling hair off your sweater and off the seats and letting it go out in the breeze.  It was kind of mesmerizing watching your hair blow away in the wind.  We had a good time. When I looked up there was a lady in the car facing us (she was waiting for her hubby) and she was watching us with a strange look on her face.  I wonder what she must have thought about all that hair flying out the windows...

Your hair sticks to my hands when I wash
it. I have to keep wiping it on the side of
the tub.

The camera doesnt pick up how much hair this
is. Its a lot more hair than it looks like.

Collected from your pillow.

Cant hide your hair loss anymore by parting
it differently. Too far gone.
 I kind of had a breakdown the other afternoon.  Not in front of you, just dad.  I was getting ready for the day and your big sisters kept coming in asking me for things, and Tucker started to cry, and  I was already worrying about you.  I  held it together, but your amazing daddy always seems to know.  He came in my room to check on me and I just started to cry.  I sometimes wonder how I can be a good mom to all of you and meet everyones needs...especially yours. Its hard.  Dad did his best to reassure me and make me feel like I do a good job.  Hes a good daddy...I hope you know what a blessing it is to have someone so in tune with his family.  I am so grateful for him.  Hes my best friend.  Hes my rock, and I know hes yours too.  Sometimes when you dont feel good you take it out on him.  You can be short and mean, and physical, but I know its only cause you know you it safe.  You can take it out on daddy and he'll always love you no matter what.  Hes the most amazing man you'll ever know. You have been blessed and so have I.

Our hero...(daddy, not the horse!)


  1. I love you all! I couldn't hold back the tears and I am sending out a cyber hug for you Lea. You are doing a great job with your family and you are an amazing mother.

  2. You looked worn out the other day when I saw you...I am amazed that you have held it together this long...Lea you are a wonderful mom and you are doing a Great Job....We love you and McKall still looks beautiful even with thin hair. Just keep reminding her that bald is beautiful and that she is a beautiful chick

  3. Mckall, Lea and Jake you all are so amazing to me. You all are taking this big trial in stride. Mckall You are my hero! I can't hold back the tears because it is hard to see you be so sick. Lea you are so amazing. I am sure there are moments that you need to fall apart. Do it. You need to. But know that I love you and appreciate all that you do for your family. Jake is amazing. He seems to know just what Mckall needs and how to calm, and comfort her. I love you all so much.