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.

A Special Wish

Just another little update that I forgot to do for Kayleigh, as she asked me to share it with you.  While Kayleigh was at her treatment last week, she had a very special visitor from Special Wish.  Kayleigh's one main wish is to be able to write a story about the experience she's going through with a children's author.  The author she's really hoping to meet and work with is Jane O'Connor, author of the Fancy Nancy books.  Kayleigh thinks that Fancy Nancy would be the perfect character to explain everything she's going through because Fancy Nancy is always explaining "big" words.  Well, Special Wish shared Kayleigh's wish with the publishing company that these books are published by and sent Kayleigh a special package which included a Fancy Nancy card, Fancy Nancy doll, and a fancy throw pillow.  The friend from Special Wish sure made Kayleigh's day as she stopped by at the right time last Thursday.  Kayleigh had been quite upset because accessing her port just before the visit was not an easy access for her and brought much discomfort.  We don't know yet if Kayleigh's going to get to meet and/or work with Jane O'Connor, but it's certainly a wish that Kayleigh will keep hoping for.