Pennies for Patients Hero

I'm not sure if we've shared this with you yet or not. Kayleigh is an honorary "hero" for the Leukemia & Lymphoma Society's Pennies for Patients campaign. She let me video her sharing a message to use at my school, her school, our neighbor's school, and a generic message for the Leukemia & Lymphoma Society.  I just know Kayleigh's going to make a difference!  I believe that making a difference in the lives of others is why she was put to the test of fighting cancer.  We're so proud of our strong, brave, positive little girl!

Thank You's Due

Good morning bright and early! I couldn't sleep well on the couch and worrying about Kayleigh. I don't think I've done this on here in a while so I want to send out a huge thank you. I've tried to be good about handwriting them and Kayleigh has too, but somehow we've gotten behind. So here goes...
First of all , I'm not sure if any of Kayleigh's doctors or nurses read this but in case you do, thank you for all you've done for Kayleigh. Thank you for your kind, caring ways. Thank you for comforting her and putting up with her when she's stubborn, disrespectful, and at times beligerent. This is not Kayleigh when she's acting this way, which I'm sure you already know. The entire staff at CMC is amazing! Thank you for all you do.
Thank you to all of our family and friends, even friends of family and friends for sending Kayleigh and our family continued sunshine, prayers, love, and hugs. Kayleigh enjoys the bits of sunshine you send her through the mail and online.
Thank you to GS troop 30202 for bringing us dinner on Mondays and Thursdays. This has taken an enormous weight off my shoulders and is much appreciated especially on days like yesterday when we're at the hospital all day. I can't thank you all enough!
Thank you to my team and colleagues for your help, support, and friendship. You're all helping me get through this.
Thank you mom and dad for helping us out do much with the girls! We appreciate you more than words can express.

At the Hospital for Treatment

Here we sit at CMC! What a long day! As usual, Kayleigh's been quite the trooper! She amazes me more and more everyday! We arrived at 7:30 this morning. She was taken back for her lumbar puncture around 11:30. She did well during the procedure. The "loopy" meds placed her in a jungle with a monkey wrestling her and she won. :) Once back in her room, nausea kicked in. She never got sick thanks to nurse TK comforting her and talking her through it. She wasn't even Kayleigh's nurse today but stopped by many times to check on her. All of the staff here at CMC is wonderful! Since the lp, Kayleigh's had two different chemotherapies (1 push, ara-c, 1 infusal, cytoxan). She's now receiving a 4 hour flush of fluids to clear the cytoxan so it doesn't harm her bladder/kidneys. She has about an hour left and should finally be discharged around 6:00. A homecare nurse will be visiting our home for the next three days to give her a dose each day of ara-c so she'll be leaving here accessed.

Just a Little Update

Just a little update to let you know that Kayleigh still has her cold. She has quite the cough! She's had no fever which is a blessing, no trips to the hospital. I did call the clinic to see if I could give her some cough syrup and got the okay. It seems to be helping! We were told to take her this Tuesday or Wednesday for bloodwork. If her ANC and other blood counts are okay, then she's scheduled for a lumbar puncture and chemotherapy this Thursday. I'm wondering if her cold will cause her ANC to be too low and she will once again be delayed. Delays are to be expected during this phase, but still cause worry.

What a Day!

Wow!  What a day!  Kayleigh was scheduled for a lumbar puncture and chemotherapy today.  When we arrived to the hospital this morning, we were sent to have labs drawn.  This was a little confusing to us, because they normally draw labs right there in the clinic or Almost Home unit.  We followed our instructions and went downstairs to have labs drawn.  We then headed back upstairs to wait.  We've gotten pretty good at waiting patiently, I think.  Each step of the way depends on the results of the previous step, so these days take a bit of time.  We had hoped that Kayleigh's counts would all be good and she could receive today's scheduled treatment.  Well, her blood counts were okay, but her ANC level dropped from over 700 to 360.  It needed to be at least 750 today for her to receive her treatment.  Therefore, she's now delayed which I guess is to be expected since the name of this phase is "Delayed Intensification".  Kayleigh was able to get her antibiotic through her port.  She now has to go to have blood drawn next Tuesday and if they're okay, she's scheduled to haver her lumbar puncture and chemotherapy on Thursday.  I'm a little worried about what follows this, I'm not really sure Kayleigh heard the doctor mention it.  It sounds like she's going to leave the hospital accessed after her lp and a home-care nurse will come for 4 days in a row to give her chemo through her port at home.  Sounds intense, again "Delayed Intensification"!!!  We'll just have to wait and see!  She's been such a trooper through everything from the day she was diagnosed to this past Monday when her hair was falling out so rapidly that she made the decision to have it shaved.  Our little girl is so amazing!  She's positive, brave, strong, beautiful, and a whole lot more.  She's definitely made us stronger!

A Message fro Kayleigh

Hi! It's Kayleigh!  You'll never guess what Special Wish gave me last week!  I got a letter from Jane O'Connor, the author of Fancy Nancy books.  She told me how good my stories on Caring Bridge are and that was very important to me.  She also told me to keep writing and to never stop.  I will never stop writing!  I hope I get to write with Jane O'Connor or another author sometime.  That would be nice!

And you know what, guess what I did yesterday?  I shaved my head, well I'm not exactly bald, I have fuzz.  My hair was really bugging me because it was falling out so much.  It feels weird now!  My daddy shaved his head too for me, but first we had the lady give him a mohawk.  It was funny!

Today I have to go get a blood test to see if my blood is ok.  My cold is mostly better but I've been really tired lately.  I'm happy my sisters are home with me today because we have a snow day.  The snow is really pretty!  It looks like a marshmallow world!

Another Update

Good morning!  I wanted to quickly share with you, that despite Kayleigh's cold, she was able to receive her chemotherapy treatment yesterday.  Our trip to Children's began with a stop at Special Wish to pick up a very special envelope that was sent there for Kayleigh.  She made me promise not to share what it is, but I can tell you that it put the biggest smile on her that I've seen in a very long time. :)  Hopefully she'll feel more up to writing on here this weekend and can share everything with you.  Her blood levels did drop this week, but thankfully not low enough for any transfusions.  Her ANC (immune) level also dropped quite drastically.  It should be at least 500 and was actually over 6,800 last week.  Yesterday, it was only 290, which means she's more susceptible to catching things.  :(  So we have to be extra careful right now with her.  Kayleigh will get two weeks off from chemo and her treatment will be taking her steroid pills at home.  She is scheduled to have a lumbar puncture on January 19th.  Please continue to keep her in your thoughts and prayers.

Not Feeling Well

Kayleigh has not been feeling very well the past couple of days. :(  She has what would be considered the "common cold" but for her seems magnified.  Her temperature went up yesterday to 100.7 and so we thought we were on our way to the ER.  When I called and spoke with the doctor on call, he said to call back if it reached or went above 101.  I was following my notes when I called which said 100.5 at the beginning and end of an hour was considered a fever, but have to say I'm very relieved we didn't have to go to the hospital.  Kayleigh doesn't have a fever this morning, but was woke up by a severe nosebleed.  I've never seen anything like it.  Not to gross you out, but it was fountaining and squirting out.  I think it scared her, me, and her dad.  We were able to get it under control within 10 minutes or so.  I sure hope we don't have anymore of those to deal with.  I also hope it doesn't mean her platelets might be low, as I think excessive bleeding can mean that.  Hoping it's just all sinus issues and possibly the dryness from our furnace.  Please say a little prayer for her that she gets over this cold quickly and is able to continue with her treatment as planned on Thursday.