A Message from Kayleigh

Thank you all for your thoughts and prayers.  They have helped me get through a lot.  I'm so happy that my mom encouraged me to get my hair in a pixie cut before i cut it all off!  I think its really cute.  Every morning i will wake up and have a head of sticks, it will be sticking straight up! I enjoy every last bit of everyones thoughts and prayers thank you!!!!          
Love, Kayleigh

Kayleigh's Final Phase 1 Chemo Treatment

Well, Kayleigh completed her final chemo treatment through her port for phase 1 of her treatment plan.  Her blood results were all good yesterday, meaning the levels all stayed the same or improved from last week's lab work.  Once again, she drew her own blood!  Only this time, it took two nurses 10-15 minutes to get her blood to draw.  They said the catheter was against her vein wall or something like that.  Poor Kayleigh was put through a lot: cough, take a deep breath, put your arm over your head, cough again, take another deep breath, lay on your side, lay on your back...and on and on.  At least they didn't have to hang her upside down!  I guess they've really had to do this to some kids!  Once the nurses drew the first bit, nurse Kayleigh took over.

She's completely exhausted today!  She wasn't able to sleep last night or really many nights, a side effect of the steroid she's on.  The chemo also upset her stomach, so we kept her home today to rest, a very good decision.  She's sleeping right at this moment.

This has been a big week for her as she decided to get her hair cut so she wouldn't have to deal with long strands falling out anymore.  Actually, she wanted her head shaved, but Jason and I, as well as others, talked her out of that and into a short cut instead.  I'm so happy she listened to us, as I was afraid she would regret shaving it all at this time.  I'm not allowed to tell you anymore about her hair or post any pictures just yet.  Kayleigh has requested to be the author of a journal entry and tell you herself.  So, the next post will be from her and will include the pictures of her choice.  After all, she did tell us this week, "I understand what I'm going through, I am going through it, and so I can make my own decisions."  Wow!  Words from an 8 year old, an 8 year old who has experienced more in 3 and a half weeks than some people do throughout their entire life.  God is at work!

Well, today is my birthday, a birthday that I'll never forget.  My beautiful, amazing Kayleigh made me a very special gift.  She drew a portrait of me and her together.  She chose to draw herself with a scarf on her head and no hair, since this is how she will soon look.  On the back of the picture she wrote, "Mommy and Me: In the morning you wake me up.  At night you tuck me in.  With love each time, it helps guide me through each night and day.  Your smile has gotten bigger each and every year.  So this is your birthday poem to show how much I care!"  I am truly blessed to have such a special little girl as my daughter.  

Kayleigh's hair is beginning to fall out more and more each day.  We've been scattering it outside for the birds to use in building their nests.  Kayleigh said to me today, "Mommy, hair is just like an accessory.  It's just like earrings, necklaces, makeup, you don't really need it."  She's been telling me today that she wants to go ahead and shave her head, so that she doesn't have to deal with it all falling out.  We are just not sure what to do!!!  She's so strong and amazes us more and more each day.  I think she's stronger and braver than us sometimes.  It breaks our hearts to see her going through all of this.  We're by her side every step of the way and know that God is too.  She will beat this thing with her amazing strength and support through prayers.  Thank you for continuing to send them her way.

3rd Chemo Treatment

Kayleigh had her 3rd chemo treatment today.  We weren't sure if this would happen or not today, because she threw up and was sick to her stomach all morning.  The doctor felt it was medicine or food combination related and moved forward with the treatment.

This was the first time that the nurse had to access her port while she was awake or not sedated.  Jason and I were a little nervous about her seeing the needle and tube being poked into her skin (into the port underneath).  Needless to say, she was quite frightened, but once we convinced her that the cream we put on an hour before the appointment was a numbing cream, she was fine.  What a brave trooper she was!  The nurse invited Kayleigh to help with her blood draw and with the saline and heparin injections (not the chemo itself).  We couldn't believe she was allowed to help, but what we couldn't believe even more, is that she chose to help.  Imagine, a little girl sitting on the examining table with a large gun-like looking syringe (actually 3 combined syringes) hooked into her port, pulling up on the syringes and drawing out her own blood.  She did it, she actually did it!  I sure don't think that I could've done that to myself!  I would've fainted!  How about you?!?!  We ended up being at the clinic for longer than anticipated, just over 2 hours, waiting for lab results.  We were very happy to find out that all blood levels had improved and she did not need a red blood or platelet transfusion today. :)

As I mentioned above, Kayleigh was having tummy issues this morning, as well as last night.  I also mentioned that the doctor thought it could be medicine or food combination related.  My guess is, it's a combination of the medicine and the food.  However, I have to say, I've never seen a child eat the way she's eating right now!  She's wanting complete meals about every 2-3 hours.  Hunger is a side effect of the steroid she's on twice daily.  It's a wonder she hasn't had more stomach aches than she has!  Boy, is she becoming a plump little cutie with her chipmunk cheeks and Buddha belly.  :) The doctor said that she should lose the weight soon after she stops the steroids, which will be on day 28, around September 22, at least for now.

As for her hair loss, it is happening slowly but surely.  A strand or two at a time on her shirt, brush, pillow, and larger amounts when shampooing her hair. :(  It's inevitable that it's going to happen and something that will take some time for us all to get used to.

Her daddy (Jason) would like for me to add how much he loves her and how proud he is of her.  He's not the only one! :)

Kayleigh's Wig

Kayleigh got her wig today!  What an experience!  My mom and I took Kayleigh back to see Becca today.  The wig was 14 inches long and very full when she first pulled it out.  She put it on Kayleigh like that and of course Kayleigh said she wanted to keep it that way.  We all talked her out of that, thank goodness!

Becca took me in the back room and showed me how to properly wash and dry the wig.  I hope I can keep it looking as nice as it does now!  Then she took it out and placed it on a mannequin head.  She thinned it out, way out, at this time.  Next we went over the the hair salon side, she placed the wig on Kayleigh, and let her creativity take over.  Kayleigh has always wanted longer hair, but her hair has never seemed to grow very fast.  So she had Becca cut it just below her shoulders, which is about how long it was a month ago before she got her back to school haircut.  Kayleigh looked through hairstyle books and chose a style with some layers around the face.  Becca cut and thinned and cut and thinned until finally her masterpiece was done.  You should have seen the smile on Kayleigh's face!  Actually you can in the pictures I've attached.

To end this journal page, I have a Kayleigh analogy for you.  As we were coming home from the salon, Kayleigh and I were talking about this experience.  Kayleigh says to me, "Mommy, I have a long bumpy road ahead of me. Sometimes I'll be driving over disgusting dead animals in the road, you know when I have to go through disgusting things, and other times the road will be smooth, as smooth as a lake." We just love our bright little girl so so much! Thank you for your continued prayers.

Finally Deaccessed

Kayleigh's port was deaccessed today!  She's so happy to not have to be hooked up to fluids at night and be able to roll around in her bed with freedom!  She's so happy to finally get a shower, something she's not been able to do since her port was installed on Aug. 20th.  It's been sponge bathing and leaning back in a chair for hair washing for her for over a week.  She's so happy to not have a tube hanging from her chest and have to worry about something happening to it all of the time.  I have to say that our whole family is relieved that her port is no longer accessed.  Jason and I are relieved we no longer have to act as nurses, injecting medication through her port and hooking up her fluids.  As I said before, anything for our little girl though, ANYTHING to get her better!

First Day of Third Grade

We can't believe it!  Today was Kayleigh's 1st day of school!  She is such an amazing little girl.  We arrived at school with her about an hour late.  Kayleigh had to wear a mask to school today because her ANC (immune) levels are very low and she is at high risk of infection.  This didn't seem to bother her one bit!  She was so excited to see her friends and teacher.  Kayleigh was very blessed to get the same teacher, Mrs. Lamb, that she had last year.  She's looking forward to spending another year with Mrs. Lamb.  Kayleigh's teacher and class welcomed us in to their room with ease.  I was so impressed with how quietly they were reading and how they didn't make a peep when we entered the room.  They acted as if nothing was going on.  I can't say that I remember my second graders being this way in the past.  Anytime we have a visitor that needs to talk with me, they seem to get louder not quieter.  I guess that's an area I need to work on!  LOL  Anyway, back to Kayleigh! We helped to get her settled, situated, and then we sat in the back of the room to observe.  Mrs. Lamb invited the boys and girls over to have a morning meeting.  She had each child introduce them self to the group so that Kayleigh could begin to learn her new classmates names.  After the morning meeting, the students did some more read to self time, then a bit of writing, and last we all headed down to the gymnasium for an assembly.  The awesome staff, nurse Ana and social worker Pam, from Children's came to present information about Leukemia to the entire third grade.  This brought comfort to Kayleigh, knowing that everyone may better understand what's going on with her and what changed will take place for her.  The assembly was fantastic and the students really asked some great questions.  Nurse Ana came up to talk to me when it was over and I was sharing how we were going to be taking Kayleigh home with us, we didn't want her to overdo it the first day.  She told us that Kayleigh had expressed to her that she wanted to stay at school for the whole day.  So, despite our nerves, we allowed her to and had a very much needed afternoon date.  Lunch at LongHorn Steakhouse and shopping at Sam's, woo hoo!  We went to pick her up from school and at that time delivered 5 very large bottles of Sam's hand sanitizer to her classroom.  We were please to see that she made it through the rest of the day, had a wonderful time, and was ready to go back tomorrow.  We're so proud of Kayleigh and admire her strength and courage!