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.