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! 

Hi,
    I went to dance last week! It was amazing that I could stand on my head.  After dance, I was real proud of myself.  When I got home and went to put my bag in my room...it was redone!  I dropped my bag, my mouth and eyes were wide opened.  It was so special!  What made it so special was that my Aunt Dee, Uncle Rob, and Grandma C. did it all!!!  I would like to thank them!

    Over that weekend, I had my birthday party.  I had my first sleepover with most of my friends.  We all had so much fun!  We even decorated bandanas to wear.  That was very special!  I want to thank everyone for coming to my party.  Sunday evening, I celebrated with my family, but it didn't last forever.  My r

     I had some sad news last week too and I want to share it with you.  My Aunt Jonelle passed away after battling cancer more than I've been through.  But I still know she will be with me all the way through.  She's now my guardian angel.  I'm going to miss her!
    

     I had a wonderful Thanksgiving with all of my family, especially my Aunt Ida, Uncle Rick, cousin Adriane, and cousin Andy who came from Florida to see me.  I'm really thankful for allthe messages that you've sent me.  They make me smile from ear to ear and know that you're with me.  I'm thankful also that I have a great family. :)  I'm very thankful that I'm getting better and know that it's working with your help, your prayers,   

eal birthday was on Monday.  I got Lanie, the American Girl of the Year Doll and matching pjs!  It was very special!
    

and your love.  I've kept up my faith.  Wishing you a great week!

               Love, Kayleigh

Kayleigh's Doing Well

She's done really well since her last treatment, no side effects really at all this time. :)  She was able to dance last Thursday.  She had a wonderful birthday which included a very special surprise.  We all had a nice Thanksgiving too and enjoyed spending time with family, especially our special guests from Florida.  I'm not going to give away any details as Kayleigh will share those with you all soon.  Please continue to keep her in your thoughts and prayers.  Her next treatment will be this coming Tuesday, the 30th, lumbar puncture day. 

Difficult Treatment Day

Today was Kayleigh's third treatment for phase 3.  We entered the appointment with hope that Kayleigh's blood and liver counts would all be good so that her treatment wouldn't have to be delayed.  We really try to remain positive as much as we can and feel that keeping positive along with prayer (ours and yours), is what helps Kayleigh stay strong, have peace, and do well. 

Her blood and liver counts were all good today, so she had no delay!  The doctor was able to increase one of the two chemos, her Methotrexate, just as her road map calls for.  The plan is to increase this chemo every 10 days.  So far, they've increased it twice.  We hope this increase doesn't intensify the side effects she has, at least not this time, as Kayleigh's birthday is just 5 days away.  I will say, she did have a bit of a difficult day.  First off, she didn't have her favorite nurse taking care of her today.  The nurse she did have accidentally misplaced the needle in her port and had to de-access then re-access her with the help of another nurse.  Then, things took longer than expected creating more anxiety for her.  To top it off, she normally gets her methotrexate from a nurse pushing a syringe, but today was the first day it was placed in a pump, yet causing more anxiety.  We saw more tears shed today than we have in a while. :(

Kayleigh's Message

Hi,
     It's so nice to hear that you all enjoy our idea of putting up our Christmas Tree early! We can enjoy it longer too:) Except mommy might get tired of it being up so long. So it may be true. But I'm glad I got to help.The tree does bring me hope and peace:)
    Thank you for helping me smile each day!
Love,
Kayleigh

Up Goes the Christmas Tree

Good morning!  I wanted to let everyone know that Kayleigh was feeling more like herself this weekend. :)  Since she was feeling so well and to lift her spirits, we decided to put up our main Christmas tree.  I know a little early, but we wanted her to be able to enjoy every minute of doing it.  I'm so glad we did this, because it put a HUGE smile on her face.  I could tell it meant a lot to her.

Kayleigh's next treatment is scheduled for today and is count dependent.  This means that her blood counts have to be just right in order for her to receive the chemotherapy.  I will post an update later today or tomorrow and let you know how she did.  As always, thank you for your continued thoughts and prayers.

Jaw and Joint Pain :(

Well, we were really hoping that Kayleigh wouldn't have any side effects from her first treatment of this new phase.  Unfortunately, we couldn't keep her from getting them. :(  About mid-day on Sunday, she began to complain about jaw pain.  All day it came and went, off and on all day long.  Then Monday she woke up with other joint pain, ankles, hips, thighs, and arms.  Her jaw no longer hurt, but her teeth felt as though they were falling out.  Her pain has continued off and on through today.  She's also having sensations in her head as if she's losing clumps of hair :( although it's not currently falling out.  I'm assuming it will begin to thin more as the next couple of weeks go by.  Please continue to keep her in your prayers and pray that she is able to continue to have strength, hope, and peace.

Happy Halloween!

Happy Halloween!  I'm happy to say that Kayleigh's still feeling great! :)  She had another good week with just a little nausea here and there, but overall good.  She was able to have a play-date, go to dance class, attend the Girl Scout costume party last night, and yes, will be trick-or-treating tonight.  We're thrilled to see her this happy and seeming healthy!

She had an appointment yesterday at Children's.  First they drew blood and did a CBC, as well as some other labs.  Everything checked out okay, so she was able to begin Phase 3 of her treatment plan.  She received fluids, a steroid boost, and IV antibiotics yesterday.  She was also able to get the two different types of chemo originally planned for, Vincristine and Methetrexate.  I think my spelling's correct! So far, so good, as far as side effects go.  The doctor said she wouldn't get any for a few days if at all this first time around.  Kayleigh's plan consists of these two chemos every 10 days for 8 weeks.  The chemo depends on her blood counts though.  If they're too low, they'll send her home without treatment and bring her back in within a few days for labs again.  So the 8 weeks could turn into more.  The doctor said this was common and not to worry.  The chemo can also throw off her neutropinia levels which can result in fever, so we were told.  Anytime she gets a fever, praying she doesn't, it will result with a 3 day stay at the hospital receiving IV antibiotics.  Of course, she's beginning this phase at the beginning of the holiday season...her birthday, Thanksgiving, and Christmas.  We're all trying to remain positive though, we have to!  In the grand scheme of things, we want her well, for sure.  We have to hope though that she doesn't have to spend any of these holidays in the hospital though too. 

Just an Update

Kayleigh has continued to have a great week!  She's been feeling well since her lumbar puncture last Monday.  She's been very happy and has wanted to do the things she has always enjoyed doing.  Dancing...playing outside...going pumpkin picking...writing...going to school...attending a wedding...and much more.  It's nice to see her feeling a little bit more normal and have a smile on her face.  She went to school all day for four days last week and we're hoping for the same this week.  She loves school so much!!! 

Kayleigh will hopefully begin Phase 3 this coming Friday, Oct. 29.  It will all depend on her blood counts.  If they're good enough, she will get two different types of chemo through IV drip.  From what we've been told, it sounds like this phase may be a difficult one for her.  Please continue to keep her in your prayers. 

I'm a bit behind on thank you cards and so is Kayleigh.  I've tried to write them here and there, but it seems when I get any down time which is usually in the evening, I end up falling asleep right away.  So I'd like to take a moment and say thank you.  Thank you to everyone who has continued to send Kayleigh and our family prayers and positive thoughts.  Thank you also for the many get well wishes full of sunshine and love you've sent Kayleigh, as well as the "fun" packages to put a smile on her face.  Our family appreciates all of the help (dinners, carpooling, babysitting, etc.) that many of you have given us as well.  Your love, support, encouragement, thoughts, and prayers are helping us get through each and every day.  Thank you from the bottom of our hearts!  With love and hugs,  Michelle :)

Cancer Stinks!

I just wanted to share with everyone that Kayleigh continues to feel better and better each day.  She went to her sisters soccer games with us this morning.  Yes, she was all bundled up and enjoyed the rays from the sun.  She had an energy boost during game 2 and asked to play soccer with her other sister on the empty field.  I thought, "what could it hurt!?!?"  She had so much fun and it was wonderful to see her being a "normal" child. 

I did want to share a quote from Kayleigh that she stated last night after she was given a "Cancer S-cks" pin from her great aunt Jonelle.  In Kayleigh's words, "Cancer stinks just like daddy's feet!"  LOL!!!  She's so right!!! :)

Home fro the Hospital

Home at last!  Kayleigh ended up being admitted Sunday night after spending 7+ hours in the ER.  Her fever just wouldn't go away and she had developed severe headaches that made her slur her speech, talk slowly, and become dizzy.  Kayleigh was at the hospital from Sunday through 9:00pm Tuesday night.  Poor thing, she wouldn't eat or hardly drink.  Her personality was not the sweet, polite young lady we all know and love.  It's really difficult sometimes for me when she's like this because we have a very loving, caring relationship as a mother and daughter should have.  It seems to be me that she takes everything out on which breaks my heart.  From talking in a very mean way, to sticking her tongue out, to pinching, I get it all and these are not things she would have ever dreamed of doing in the past.  I know it's not her doing these things, but this nasty disease testing me. 

The doctors did many cultures on her blood and other bodily fluids, a CT scan, and an MRI.  They never really said what they were looking for, Jason and I could only speculate it was a brain tumor or more cancer.  Of course we were thinking the worse, as it's hard not to at times.  Fortunately, the CT scan and MRI were both clear and showed NOTHING in the brain.  The MRI did show some sinusitis and a fluid showed that she does have a nasty virus, causing the fevers and upset stomach.  The doctors determined that the severe headaches were a result of the lumbar puncture she had last Thursday.  You can't imagine how much pain she was in, well maybe if you suffer from migraines.  She couldn't hardly move and she'd get horrible pains in her forehead that made her dizzy and caused nausea.  Her eyesight was also blurry and she was sensitive to light.  We just felt so bad for her. Just to think that this was suppose to be the "laid back" phase of her treatments.  We can only hope we can keep her virus and illness free for the remainder of her treatments.  That will be easier said than done, that's for sure!

First Fever Since Diagnosis

Well, Kayleigh got her first fever since diagnosis yesterday.  Thankfully the clinic (doctor's office at the hospital) was still open so the nurse had us come there instead of going to the Emergency Room.  By the time we got there, Kayleigh's temperature was over 101.  For most kids, that fever is not that bad, but for children fighting cancer, it can be very serious.  Anytime she gets a fever like this, she has to be seen and given antibiotics through her port for three days either at the hospital or at home.  Fortunately, we were able to come home with Kayleigh accessed to get the antibiotics here.  It is the ANC (immune) level that determines whether she stays in the hospital or is sent home for this treatment.  Hers was high enough that they allowed us to come home.  Needless to say, it was a sleepless night.  I feared her temperature soaring.  It did end up going over 102 even with the Tylenol.  We have to keep a close watch on her.  If her temp gets to 103 or higher, we have to get her back to the hospital.  The doctor said that it is common for these children to get many fevers during the fall and winter (flu season) months, especially when they're in school.  I guess we now know what this fall and winter will be like for Kayleigh and our family.  As always, thank you for your continued thoughts and prayers for Kayleigh and our family.

Good News

Kayleigh had her second lumbar puncture for Phase 2 today.  Once again, she was brave as can be and did quite well.  The staff at Children's is absolutely wonderful, each and every person that's crossed our path so far.  Today we were blessed to meet a very special nurse who has something in common with Kayleigh.  You see, this  nurse was diagnosed with ALL at the age of 13.  She is now an adult, married, and an oncology/hematology nurse.  What an inspiration she was to us!  She was comforting and gave us more HOPE than we already had.  Thank you, nurse Alyssa!

Dr. D also gave us some good news today.  The genetic, chromosomal test he ran on Kayleigh's bone marrow had good results.  Her cells were able to grow normally in the two weeks time.  The first time he did this test, they did not, so he repeated it two weeks ago.  This time, he saw the results he wanted.  He also said that with her spinal fluid being clear last week and with these results, she truly is in good remission.  This is wonderful news!!!  It doesn't mean that she's cured, however it does mean that the treatments are working and they have the leukemic cells under good control.  We hope and pray that the results continue to show these same positive results.  Kayleigh continues to have a long, rough road ahead of her with 2+ years of treatments and ups and downs.  We can't thank you enough for all of your continued positive thoughts and prayers for Kayleigh and our family.

Kayleigh's Message

Hi it's Kayleigh again!  Last night was such a blast.  I had sooooooomuch fun talking with my friends and family some people I didn't even know I talked to.  I rode in a wagon for most of the time but I got out and walked a real little bit at the end.
Today I had my treatment and it went just fine.  I even helped the nurse draw my blood and give me my medicine!  Mommy said she could never do that.  Guess what I had a bowl of cereal before bed last night and didn't get to eat until 1:00 today the doctor was late (really late).  Thanks for your thoughts and prayers! 

Love Kayleigh

Light the Night for Leukemia

Boy, what a whirlwind of a day!  The day began with Kayleigh having blood drawn to make sure her levels are all okay for the lumbar puncture she's to have tomorrow.  The doctor's office called by the afternoon with her results.  Her levels are okay for the chemo treatment, but we weren't so sure she was going to get to attend tonight's events due to her low hemoglobin (red blood).  Since she didn't seem symptomatic, the nurse said she could wait until tomorrow's visit at Almost Home to receive her transfusion.  This was a relief to Kayleigh as she wanted so much to be a part of the Light the Night for Leukemia walk tonight.  She got to do just that! 

Jason pulled Kayleigh in a wagon up until that last 20 steps or so, then she insisted on walking.  Kayleigh was overjoyed with how many people came out to support her, family near and far, even from Tennessee (thank you, cousin Gail).  Friends from every part of our lives; work, school, dance, Girl Scouts, etc.  I bet we had at least 80 people there walking to support Kayleigh and others suffering from a blood cancer.  Kayleigh also got to meet someone she's been waiting to me this entire month, Ally, another child going through the very same thing.  I too was thrilled to finally meet her mom, Janel.  It was a crazy chaotic night, but a night we'll never forget.  Thank you to everyone who came, who made a donation, who were there with us in spirit.  Your support means the world to us and is helping us get through each and every day.

Miami Valley Results

We heard today that the Valley did not find any leukemic blasts in Kayleigh's bone marrow. :)  We were very happy to hear this, although she could still have point something percent, just not enough to detect.  Kayleigh will have to have a CBC (complete blood count) done on Thursday morning and then is scheduled for yet another LP (lumbar puncture) on Friday.  We're not sure why she's getting the LP this time.  Chemo injection?  Testing more spinal fluid?  Both???  I will let you know how she does and what we find out about her second phase (consolidation) after Friday.  Please continue to keep her in your prayers.

Another Day at Almost Home

As many of you know, Kayleigh had a visit at the Almost Home Unit today for two scheduled procedures.  She had a bone marrow aspiration in which the bone marrow is used for a couple of tests.  She also had a lumbar puncture to withdraw some spinal fluid for testing and to inject a chemo treatment within. 

Kayleigh once again was a trooper!  Her appointment was scheduled for 8:30am, but she wasn't actually taken back for the procedures until noon.  We felt so bad for her because she was starving.  She wasn't allowed to have anything to eat after midnight.  Since she's been on the steroid, she's been eating like crazy, including in the middle of the night.  So not having anything after midnight was very difficult for her.  This meant that she missed her middle of the night snack, breakfast, morning snack, and lunch was pushed back.  I can only imagine how her stomach felt!  I'm guessing like a stampede of wild horses!

Kayleigh has to be sedated for these procedures, so she's not completely asleep, but she has no idea what's going on.  Jason and I have been in with her for all of her BMA's and LP's so far, so we get to see and hear what's going on.  The first couple of times, Kayleigh was dreaming she was in the rain forest and we were animals.  She also saw double and triple, and thought she was missing some body parts.  Well, she did see multiples today, but had no adventure in the rain forest.  Today, she was cooking!  She was cooking her "mommy's famous macaroni and cheese", at least that's what she thinks.  It was pretty comical, nice to find a little humor in all of this.  She was sprinkling cheese with her hand and stirring the macaroni.  She said to be sure to scrape the sides of the bowl so the macaroni didn't stick.  At one point, she was floating on a spoon boat in a sea of macaroni and cheese.  She never remembers any of these stories, but we sure do. :)
Back to her tests, they both went well.  We were very pleased when Dr. Dole came in a couple of hours later and shared that they saw no blasts (cancer cells) in the bone marrow they tested at Children's.  Some was sent to Miami Valley for further testing and we'll no more about that tomorrow hopefully.  He also sent some for genetic testing, in which we won't have results for a couple of weeks.  Her blood levels were all about the same as last week, which were good, so no transfusions today. :)  Her ANC (immune) level did go down by 1,000 but is still in a good range.  We're very happy with these results so far and hope and pray the news continues to be good.

As for Kayleigh now, she's having quite a bit of back pain, I'm guessing from the LP.  Her stomach's a little upset, but could be from all the things she managed to eat for the remainder of the day.  Many of you have never seen Kayleigh and many of you haven't seen her in a long time.  She's definitely gone from a very petite little girl to an extremely bloated young lady.  It's hard to believe that in just three weeks time, she's gained almost 13 pounds.  All of her weight is in her tummy and cheeks.  Today is day 28 of her treatment, the last day that she had to take her steroid, at least for this phase.  The doctor told us that her appetite should decrease and her swelling should go down in the next couple of weeks.  He also said she may get to the point where she doesn't want to eat for a few days.  I guess she's stored up enough energy for that, but I worry about her not wanting to eat for longer than that.  We're just going to have to continue to take each day one step at a time.

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!

Happy to Hear Good Results

We spent all day today in the Almost Home unit at Children's Hospital with Kayleigh.  She was there for a scheduled visit, one that was trying but had a very positive end result. 

Bless Kayleigh's heart, as she was so hungry in the morning and wasn't allowed to eat a thing.  The steroid that the doctor has her on makes her extremely hungry and she has to eat every couple of hours.  She wasn't allowed to have anything this morning because she had to be sedated for her procedures.  Of course, things did not run on time which was even worse for her.  They finally took her in just before 11:00, for her lumbar puncture, bone marrow aspiration, and chemo treatment.  Once she came too and was finished lying nearly upside down for a half hour, she was ready for us to order her room service.  Two plates of spaghetti that little girl ate, two plates!!!  We've never seen her eat like this before!  We also learned that she needed yet another red blood cell transfusion and a platelet transfusion.  The transfusions made our stay a little longer than expected, about 3 hours longer.  Anything to help our little girl though!

While we were sitting in the room with Kayleigh, watching the Food Network which she insisted upon, the room phone rang.  Jason took the call and it was a lab tech with the results of Kayleigh's bone marrow aspiration.  We were so happy to hear such good results!  Kayleigh's blast count had gone from 98%, down to just 3%.  That means that the treatment plan the doctors are following right now is working.  The Leukemia cells  are being killed, I think that's the proper term to use.  We can only hope and pray that her next bone marrow aspiration goes down to 0%.

Kayleigh Gets Measured

Well, my mom and I took Kayleigh today to be measured for her wig.  Yes, her hair is expected to all fall out.  This was devastating news to her (and our family) at first.  I believe she's okay with it now.  We are very grateful for the Hair for Kids program that Becca's 3700 Hair Studio provides, as Kayleigh will receive a wig at no cost to us that's made of "real" hair.  Kayleigh is insistent about having hair.  We all think she'll be just cute as can be in hats and scarves, but she truly feels that she needs hair and is afraid of being made fun of. :(  So, she was measured, hair color matched, and we were told it should be ready by next week and Becca would style it for her.

When talking with Kayleigh about her hair loss and how her hair could come back different...curly, straighter, thicker, darker, lighter...she responded with, "I don't want it to come back red!"  No offense to any of your beautiful red heads, our daughter just doesn't happen to want to be one. :)  She will be beautiful no matter how it comes back!

Needless to say, we had an eventful car ride home, as she continually got sick all the way.  Another wonderful side effect from the chemo!  I just keep reminder her and our family that the chemo is working and this will all be worth it in the end.  I don't thinks he quite believes me at times, and I guess I don't really either all of the time, but I still keep trying to remind us of that.

Our Daughter's Story

Our daughter, Kayleigh, was diagnosed with Acute Lymphoblastic Leukemia on August 20, 2010.  We had no idea that this is what was wrong with her when I took her to the doctor for what seemed to be unrelated symptoms.  I took her to the doctor in early August because she had complained about severe pain in the back of her left leg which was also accompanied by a slight fever.  While at the doctor's office, I noticed excessive bruising on her shins and also asked about this.  This visit didn't result in much, a strained hamstring, unrelated virus, and kid-likely bruises.  The pain, fever, and bruises all disappeared in their own time. 

The severe leg pain and slight fever came back once again on August 19th.  This time these symptoms were accompanied by abdomen pain and bruising on Kayleigh's arms.  The doctor decided to side with caution and send Kayleigh for labs and an x-ray.  Her appointment was at 10 AM.  By 3:30, we knew the x-ray was fine, which we were relieved by.  At 5:00, the phone rang again...with news I thought I would never have to hear.  It was the doctor's voice this time.  As she began to go over the results, I had no idea what many of the terms (hemoglobin, hemotacrit, platelets) meant but knew by her saying "very low" after each one, the results weren't good.  Then she told me "and they found blasts".  I could hear nervousness and sorrow in the doctor's voice.  I said, "Blasts, what are blasts?"  The doctor proceeded to tell me that they are cancer cells and that Kayleigh likely has a form of Leukemia.  I was then asked how soon we could get her to Children's Emergency to be admitted and that she would then be sent up to the Hematology, Oncology floor.  My words, "Are you serious?  I can't believe this!", among many others and sobs of fear, sadness, anger, and disbelief.  At the time I received the call, I was the only one home with our three little girls.  I had to pull myself together, make many phone calls, pull things together for an unexpected hospital stay not knowing how long it would be, and prepare our family for the beginning of a long unwanted journey.

Kayleigh was just getting out of the shower and I calmly dried her hair, then took her into her bedroom and asked her to help me get an overnight bag together.  When she asked me why, I simply told her that we needed to go stay at the hospital that night for further testing because the doctors thought her blood was sick.  Of course she was terrified, as we all were but trying not to show it.

And so our journey began...  We arrived at the hospital, she was admitted, soon after sent upstairs, and began an unknown evening of tests.  Kayleigh had a bone marrow aspiration on Saturday morning and by the afternoon, we knew which type of Leukemia she had.  We were pleased to know that she has one of the more curable types with a cure rate of 90% or greater.  By Sunday afternoon, she had a port implanted, lumbar puncture with chemo injection, and her first chemo treatment through her port.  What a whirlwind!  Everything happened so quickly, but we are truly grateful that the doctors were on top of her disease right away.

Kayleigh spent almost the entire week in the hospital.  She had a few side effects that kept her in longer than expected.  The port site chemo made her jaw hurt horribly, she couldn't hardly eat for days and was fed intravenously.  The lumbar puncture made her lower back hurt so bad that she couldn't raise herself up straight and had difficulty walking.  Within the time frame we spent at the hospital, our family was visited by all kinds of people...family, friends, doctors, nurses, a dietitian, a pharmacy rep, a social worker, a psychologist, and the list goes on.  Again, it was such a whirlwind, a nightmare, a week in the fog.

Kayleigh and our family have come to terms with her diagnosis.  We have a very long journey ahead of us, as she will have ongoing treatment throughout the next two years.  She will have good days and not-so-good days, as we all will.  We are truly blessed to have so many wonderful friends and family members around us.  We rely on our prayers and those of others, as we know that God is a key player in Kayleigh's progress and will be by her side every step of the way.  So with that said, we thank you all in advance for your continued positive thoughts and prayers as Kayleigh battles and overcomes her cancer. 

Blogging for Kayleigh

Why am I blogging for Kayleigh?  Why do I want to document what our daughter's been going through?  I want to do this for many reasons.

First, I'm doing this for me.  I want to use this blog as a journal to keep track of our daughter's journey.  It will give us something to look back at and see what Kayleigh has endured.  The blog will help me keep track of all that she's been through and all that is yet to come.

Secondly, I'm doing this to keep all of our wonderful friends and family updated on how Kayleigh's doing.  Kayleigh does have a Caring Bridge website as well.  Caring Bridge is a wonderful site that we will continue to use.  This blog will allow me to share even more than I do through Caring Bridge.  This is a free site and I won't feel as guilty about not having many tribute donations as I'd like to be able to contribute (thank you to those who have done so).  I will be able to post videos and even more pictures than before.  Our friends and family will be able to comment on the same page as the blog as frequently as they would like.  I will do my best to update this blog as frequently as I can.

Finally, I'm hoping that I will be able to help educate other families going through the same thing, just as Ally's family did for us. ( http://all4ally.blogspot.com)  Maybe other families will read our story and find some peace in knowing they're not alone.  Together, we can and will beat this nasty disease.