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.