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!