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.

Just a Quick Update

Hello, it's Kayleigh's mommy again. :)  Kayleigh hasn't felt much like typing on here lately, but hopefully she'll be feeling more like herself again soon.  She's actually in a pretty good mood today, but is resting.  I wanted to let you know that her blood counts and ANC (immune) level were all good today so she was able to receive her chemotherapy, actually two different types.  She did quite well!  Praying the side effects are minimal for her this next week.  She goes back next Thursday afternoon for her next dose.  I'm hoping she'll feel like sharing some more stories or poems with all of you very soon!  I bet you're anxious to read more of her pieces as well!  :)  Wishing you all a very Happy New Year's celebration and a new year filled with good health, hope, happiness, and love.

PEG Shot Update

Just wanted to let you know that Kayleigh did quite well with her PEG shots today.  I did find out that they are part of her chemo treatment.  We put a special cream called EMLA cream on her an hour before we went.  This cream numbed her and helped a little with the surface pain, however it didn't help with the internal pain and burn.  She let out only a little scream like the nurse told her to, in fact the nurse yelled with her.  LOL :)  After a few tears and an hour of monitoring, she was released and we went to pick up her latest craving, soft tacos from Taco Bell.  I know not the most nourishing lunch, but we're just happy she's wanting to eat, thanks to the steroids she's currently on.  She seems to be doing okay this evening, just a little tired, sore legs, and funny feelings in her head (the hair loss process is further happening :( ).  Her next appointment will be on Thursday and will involve two different chemotherapy infusions.

Puppy HOPE

We hope everyone had a nice Christmas.  I'm happy to say that Kayleigh was able to be at home for the holiday.  She began phase 4 of her treatment plan last Thursday.  This involved two new chemotherapy medications and back on the steroids for a 7 day rotation.  This is suppose to be the most intense phase.  She worried us on Christmas Eve as she was quite pale, tired, and had very dark circles under her eyes.  We had her go to bed early and rest.  Fortunately, she seemed better Saturday morning.  She had a wonderful Christmas and has asked me to share with you that Santa brought her (actually our family) the puppy she was asking for.  We now have a black and tan miniature dachshund, who is just as adorable as can be.  Kayleigh named her the most perfect name...HOPE.  Kayleigh's smile and happiness was worth a million dollars.  I think Hope is just the medicine Kayleigh needs. :)  Please continue to keep Kayleigh in your positive thoughts and prayers.  We received a call today and were asked to bring her to the clinic tomorrow for her second set of PEG shots, I believe this is another type of chemo, but need to read up on them again.  She will then return to clinic again this Thursday for chemotherapy.  I will keep this site updated as much as I possibly can.  I will do my best to encourage Kayleigh to write a message for all of you again as well, she's just been extremely tired lately.

Kayleigh's Puppy Story

Happy Winter everyone!  Merry Christmas too, a little early!  Kayleigh has asked me to publish the most recent story she's written for all of you to read.  I think that through reading her story, you'll soon learn the one thing that's at the top of her Christmas wish list, aside from getting well.  This story is her gift to all of you! :)

Christmas Puppy
by Kayleigh Crabtree
12/18/2010

     "I want a puppy," said Kaitlyn politely.  But her father had always yelled, "NO, NO MORE dogs!!!"  "So I followed his rules, I still want a puppy bad, but how am I going to get it?" thought Kaitlyn.
     Christmas was very soon and Kaitlyn still needed a puppy.  She had a good plan but had to talk to her mom first.  She ran to her mom's room, shared her plan, and her mom loved the plan.
     The next day had come quickly.  It was soon time for Kaitlyn's plan.  "Mom, behind the couch?" asked Kaitlyn.  "Check!" exclaimed mom.  "Kaitlyn, behind the door with the puppy?" asked her mom.  "CHECK!" Kaitlyn answered excitedly.
     Her dad walked in.  They jumped out!  Kaitlyn ran with the dog to her father's face and let the puppy lick him.  He LOVED it and Kaitlyn got to keep her dog!!!
Unfortunately, this one gift may not be fulfilled at this time.  She's still trying to convince everyone involved.  I'm still hoping we may ALL have a little Christmas surprise. :)

Just so you know, Kayleigh has been doing remarkably well since her stay in ICU a week and half ago.  She's had no other seizures that we've observed and is happy as can be. :)  Her next treatment, the first in the next phase, will be this Thursday.  Please continue to keep her in your positive thoughts and prayers.  She will begin a new chemotherapy, Ara-C, that she had only once in the very beginning when first diagnosed.  This will be done through another lumbar puncture.  We're really hoping she has no or very little side effects, especially with Christmas so near.

Kayleigh's Showing Improvement

Kayleigh is doing so much better today! Your prayers and ours are working. She may even get to come home! :). She is a bit sad today though as we were given tickets from Special Wish to go to the Sugar Plum Fairy Tea and Nutcracker ballet this afternoon. She's shed many tears over this today. Poor baby! But the doctors think they have an answer to her seizures and a new plan we'll soon find out. That's great news! I never want to witness her or anyone else like that again!!!

A Visit to the ICU

Well, here I sit awake watching Kayleigh sleep. If only I were watching her sleep at home! For those of you who worry about me, I did rest some last night. Many of you who check in on Kayleigh probably have no idea what's going on. On Thursday, Kayleigh had an episode at school where she lost some movement in her neck, arms, and legs. She couldn't hold her head up well, walk without wobbling, or grasp her sandwich and give herself a bite. I'm thankful for my parents who are close by to the school and were called by the nurse because Jason and I were at work. I was able to get her in to see her doctor that afternoon, but by the time we got there she was doing much better. Happy, smiling, walking with only a slight wobble, able to do the exercises she was being put through. So her port was accessed and labs were drawn, then she was sent home. She was sent home since she looked so well and with the doctor knowing she was going to be back at 9:00am the next morning for treatment. He said what she had was neuropathy from the chemo, vincristine. So we took her home and led a normal evening. The doctor even told Kayleigh she could go to dance and so we let her just to watch. She did dance a little at the ballet bar. She was fine the rest of the evening, ate and slept well. She actually slept through the night which she hadn't done for the previous two nights. Needless to say, she wasn't okay just shortly after she woke up Friday morning. She got up fine, came out to the family room where we were getting the other two ready for school, and curled up on the couch. About 10 minutes passed and she wanted to get up and have some breakfast herself. Well, she couldn't push or pull herself up. Her arms wouldn't work for her and neither would her legs. Her head began to flop like she didn't have control of it either. She was talking fine at this point. Then her lips began to go numb shortly after leading to very slow speech. The slow speech led to  and unable to understand speech within 20 minutes or so. As she fell asleep on the couch, I called the doctor on call to see what we should do. I wasn't thinking this was the neuropathy but I didn't dream it was seizures either. The doctor suggested we wait and come to her scheduled appointment because going through the ER would probably take longer. So we listened and tried to wait patiently. However, Kayleigh woke up and at this point was drooling from her mouth and couldn't get her words out at all. That was it, I had Jason carry her to the car and we headed in to the appointment a half hour early. I do wish I would have called for the ambulance because now knowing it was a seizure I fear it went on too long. They took us in right away and began to examine Kayleigh. During the examination she seemed to be getting better. The doctor sent her for a CT scan though and while waiting for the hospital to get the okay from insurance, which angers me a little she had to wait, she had yet another seizure and a bad one too. Finally they took her in to do the scan which she seemed to do fine with and ended up talking a bit more normal saying, "I love you, Mommy!". Music to my ears!! While in the scan we were told it was seizures she was having and that she'd be placed in ICU because they could best watch over Kayleigh. I never dreamed we would be there with one of our girls! Kayleigh had a couple more slight seizures but was better by midday after receiving medication. They did an MRI and lumbar puncture. All three tests showed nothing, clear fluid, no brain damage, no new cancer cells, no tumors. What the doctor is thinking caused the seizures is one of the two chemotherapies both of which have a slight risk of causing. The doctor is leaning towards methotrexate toxicity. So she won't be receiving anymore of that for at least a year. He'll be switching her to something else. He is stopping phase 3 as she only had a couple treatments left and giving her a week or two break, then on to phase 4. We're not really sure what it involves. We're pretty sure she's going to have to be on seizure meds for the duration of her treatment plan, the next two years, then they'll figure things out from there. All I know is this has been a horrific experience for her, me, and Jason. I know I'll have nightmares about how I saw her, like a vegetable. :( She's going to have an EEG today and then will be moved to the HemOnc unit for a couple days or so. I ask that you please keep Kayleigh and our family in your positive thoughts and prayers. I bet you've been praying as you read this already and I'm sure I don't need to ask for them, just feel the need to. I will continue to keep you updated.

I wanted to share with you how Kayleigh did yesterday with her lumbar puncture.  Her blood and liver counts were all good, so the doctor was able to perform the lumbar puncture.  She then received the two different types of chemotherapy, Vincristine and Methotrexate.  The doctor was able to increase the Methotrexate as planned.  This is all good news!  She's still on track with her road map and hasn't been delayed at all.  Her appointment went well throughout the entire day.  She even had a big surprise while we were there.  A staff member came in to see if she'd like to be visited by Ronald MacDonald and Heater the dragon.  Of course, she said yes!  The staff member asked us if it would be okay for the channel 2 news camera to come in as well.  Kayleigh was fine with this and so were we.  Needless to say, Kayleigh's visitors came in, we did notice the news camera just outside her door, but really didn't think they were filming.  Then in came news anchor, Dan Edwards, who let us take a picture of him with Kayleigh, visited with her, and shook our hands.  What a very nice man he was!  Shortly after they left, we were asked to sign a release in case her footage was used.  We were told to watch between 5 and 6, so of course we had on the news at that time when we got home.  Unfortunately, we did not have any unused VCR tapes and do not have DVR.  The McHappy Day piece came on the news, we recognized the first little boy they showed as he's been in the hospital since before Kayleigh was diagnosed.  Then all of a sudden, there she was, giving Heater a big high-five and smiling a huge smile from ear to ear.  She looked absolutely beautiful, just as she always does.  Watching her watch herself was magical!  It truly brought sunshine and happiness to her day (and ours too)!  I've been trying since last night to find the footage online, but have had no luck. :(  I'm going to try calling the newscenter and am hoping they may be able to provide us with a copy of the footage.  I know having a copy and being able to show it to Kayleigh on one of her more difficult days, will help bring her happiness and sunshine once again.  It was quite the experience for her! :)  As always, thank you for continuing to keep her and our family in your positive thoughts and prayers.  They're working!