Kayleigh's Medication Calendar

I meant to post this picture with my previous update.  I believe I mentioned a while ago how worried I was to have to be giving so much medication at home, each med having to be given at a different time of day, different amount per day, and a different amount of days per month.  This is the calendar I created to help Jason and I out with making sure Kayleigh has taken her meds when she's suppose to.  I'm sharing it in hopes that it may help someone else out who is going through a similar experience.

A Little Normalcy Since Being Diagnosed 7 Months Ago

Happy Spring!  I wanted to post an update sooner this past week, but life has gotten in the way (in a good way).  Kayleigh's health has improved as this past week progressed.  Her fevers went away last weekend.  She received two more doses of antibiotics last Saturday and Sunday.  The antibiotic took almost a half hour to infuse, so I guess you could say they were "super" doses.  Kayleigh's cough lessened as the week passed.  She went back to school on Wednesday full time through Friday.  She danced on Thursday night as well.  On Friday, she was feeling well enough to attend her school's Honor Flight dance.  She was happy to be able to donate to another worthy cause, sendingWorld War II veterans on the Honor Flight to Washington D.C. to see the memorial.  She had a wonderful time dancing with her friends! :)  Then on Saturday, I took her and her sisters to see the ballet Cinderella performed by an area dance company.  We went withher Brownie troop.  She was able to go on a backstage tour, go to a make-up workshop, go to a dance workshop, and have a tea party prior to the dance.  She had an amazing time!  Then that night, she had her first sleepover in a long time with one of her BFF's.  This made her the happiest of all!  I know she felt like a "normal" kid this weekend.  She had the time of her life and is now sleeping soundly in her bed.

I was just thinking about the date a little while ago and realized today is March 20th.  At first I was thinking she was diagnosed 6 months ago today, but I just figured out that again, and actually it was 7 months ago today.  I'm not sure where the past 7 months have gone!  It's actually quite scary how quickly they have passed, however I'm not complaining.  I hate to wish time away, but I want Kayleigh well, cancer-free, and not having to have anymore treatments.  However, I think about the end of her treatment plan, and I'm not sure I'll be feeling that same way then.  I think beyond the next 18-20 months, I will always carry the worry on my shoulder that she will have a relapse or a different cancer will appear.  Until then, we will continue to take each day one step at a time, living life to the fullest each and every moment, and having faith that God is watching over her and our family.  As always, thank you for your continued positive thoughts and prayers.

A Trip to the ER

My last post shared Kayleigh having good blood counts, being healthy, and going to school full time.  That was just this past Wednesday, March 9th.  Well, she began coughing just a little that night and the next morning, I decided to take her temperature before I took her to school.  She didn't really feel warm to me, I just thought I better take it.  Well I'm glad I did because it was just over 100.  Her temperature fluctuated that day between 99.4 and 100.2.  Her cough became worse.  Needless to say, I kept her home from school.  She was NOT happy about this nor missing dance that night.  She continued to cough, sometimes the cough was loose and sometimes barky and dry.  Her temperature was in the upper 99's Friday morning, so she stayed home from school again.  Another disappointment, because her best friend asked her to have a sleepover that night.  She rested all day at her grandma and grandpa's house and seemed to be doing okay.  She had a little more energy and was considerably in a good mood, despite having to postpone her get together.  I decided since she was doing okay that I would join some friends of mine for their bridal happy hour.  It was so nice to get to spend time with friends and relax a little.  When I arrived home around 8:00, I decided to take Kayleigh's temperature again, as it hadn't been taken since 3:30.  I was shocked at how quickly the numbers moved up!  She had been doing pretty well, temperature in the low 99's most of that day.  It was 101.4 when I took it! :(  So, I called the hospital, asked for the doctor on call, and Dr. B called me back soon after.  He asked how soon we could get to the hospital and said he would have everything ready.  The one positive thing about Kayleigh having leukemia, is if she ever has to go to the ER, we get to enter the ambulance entrance and bypass the horrible waiting room filled with all kinds of germs.  They have a room and the supplies waiting and get to work right away.  I remember taking her when she was younger and her youngest sister too, and having to wait for like 2-3 hours just in the waiting room.  They had Kayleigh accessed within a half hour and hooked up to infuse antibiotic within the next 15 minutes.  The infusion took 30 minutes and then they did a chest x-ray.  The ER doctor then shared that the x-ray showed her chest was clear and blood counts were all good.  The nurse, JR, who did an amazingly great job with Kayleigh, also drew blood to place in two different culture bottles.  We won't have those results for 48 hours.  So, we left with not knowing what she really has, but she's accessed and a homecare nurse is coming today and tomorrow to infuse more antibiotic.  My guess is that she has a sinus infection, as her face is very puffy, she's full of mucus (gross I know, sorry), and how her cough sounds.  It's hard telling for sure where she got this, but it's likely my worry from Wednesday came true, and she got it from me or Kaycee. :(  She's been in school since last Monday, full day most of the time.  She went to dance last Thursday, kids were coughing, and she didn't wear her mask.  She delivered Girl Scout cookies with me on Saturday to a few houses and also sold cookies at Krogers on Sunday.  I like to think I didn't infect her, she could have picked up something from any of the other places, but chances are, even though we've stayed away from her, she got sick from one of us.  Oh well, it's a done deal now.  I guess I should have quarantined the two of us in a hotel room for the week.  It's all in the past and we just have to get her healthy again.  I'm hoping the antibiotics will do the trick!  Thank you for thinking of Kayleigh and saying a little prayer for her.

2 Week Check-Up

Today was Kayleigh's 2 week check-up since beginning the Maintenance phase.  She checked out a-ok with Dr. D!  Her counts were all good and so he made no changes to her chemotherapy meds at this time.  However he did go over times we need to be aware of that we will need to stop the meds or increase the meds.  It's all a bit confusing, but we'll get the hang of it.  :)

I've been a bit stressed this week though due to other things.  I've been sick and our youngest daughter, Kaycee, has also been sick, both of us with a viral infection that can't be treated with antibiotics.  We're doing our best to stay away from Kayleigh and wash our hands extra.  I still worry that Kayleigh will either catch this from us or catch something at school now that she's back full time.  If she gets a fever at anytime of 101 or greater, it still means a trip to the ER and 3 days of infused antibiotics either at home or admitted in the hospital.  Please pray she stays healthy.  She's really done remarkably well this far!  Another added stress is worry about our middle daughter, Kari.  The lymph nodes in her groin area are slightly swollen and she's been complaining about them hurting her.  I took her to the doctor today and a CBC was done.  Fortunately, her results came back good today, with the exception of her white blood count being slightly lower than normal 3.9.  I was told to call back at the end of the week if she continues to complain about pain.  This has gone on for over a week now.  I can't help but worry!  Please add Kari to your prayers as well.

On a happy, positive note,  Kayleigh came home yesterday with a video of the "Stuck for a Buck" activity that her principal and science lab teacher did last week.  The students donated a dollar towards the Pennies for Patients campaign for a piece of duct tape in return.  They then used the duct tape to tape Mrs. Noe and Ms. Billiel to the wall.  Our family enjoyed viewing the video!  I wish I were able to share it with all of you.  The school raised over $500 with just this activity alone.  Kayleigh came home with a total yesterday of total money raised, I'm not sure how accurate it is, but she said that the school raised over $7,400 to donate to the Leukemia & Lymphoma Society.  That's awesome, absolutely unbelievable, so touching!!!  Thank you Fairbrook students, parents, staff, and the surrounding community for all of your support.  If you take this amount and add it to what the school where I teach raised, the total is over $11,000!!! Wow!  Kayleigh helped to make this difference!  We're so proud of her efforts and touched by the generosity of the people that surround us.  Thank you everyone!

Beiber Fever

Kayleigh had a terrific week this past week until she caught a fever, fortunately not one to put her in the hospital. She began the week going to school two half days then by Wednesday, she went for the entire day. I took her after school to have her blood drawn for a CBC. I was able to take her to the Beavercreek outpatient testing center. I was a bit worried when we arrived and there was a line to sign in and not an open seat in the waiting area. The other kids seemed so sick! Fortunately, they let us go to the back to an empty room to wait away from germs. Also, the courier was on his way there so Kayleigh's blood was drawn right away since it's a stat order and we were snuck out the backdoor. Kayleigh went full day
the rest of the week. She even got to do the morning announcements Thursday morning to encourage her classmates to bring in a "buck" to help make their principal and science lab teacher stick to the wall on the final day of their Pennies for Patients campaign. I hear she did a fantastic job! She
went to dance Thursday night and danced the entire time. Her dance teacher made a point to come out and say how great she did and how proud she was of Kayleigh for learning her steps. I love seeing Kayleigh so happy! We got the phone call about Kayleigh's counts as well on Thursday. All counts were good! Her ANC went sky high, from 770 to 3,700! So I decided this weekend would be a little more normal, a little more fun. Then it happened, she came down with a fever on Friday...BIEBER FEVER...that is! :). Kayleigh was so excited to go see a movie and so were her sisters. I must say it was a rather inspiring movie. We had a great time! Then her good friend came over for a sleepover and I took them shopping Saturday morning. A little normalcy and Kayleigh feeling good is very nice!

An Update and Request for Your Help!

I wanted to let you know that Kayleigh's having an overall good week.  She went to school half day yesterday and was so excited to be there!  She also went to dance and actually danced a little bit.  Unfortunately, she's having some pain from the lovely Vincristine chemotherapy she was given through her port on Tuesday.  I believe the last time she had this specific medicine was in December.  Every time she's had it, she has jaw pain and can hardly eat.  Her joints also ache, at times worse than others.  I just hate when she's in pain!  I just have to remind myself, these pains mean the chemotherapy is working.

I also wanted to tell you about something Kayleigh's class is doing.  Her class is holding a fundraiser in her honor to raise money for the Leukemia & Lymphoma Society's Pennies for Patients campaign. If you have nothing to do at the following times, please consider stopping by one of the locations to support Kayleigh, her class, and the Leukemia & Lymphoma Society.  You can visit the tent outside Brio at the Greene between 5-7 tonight or the Beavercreek Kroger Marketplace on Sunday between 3-7.   Kayleigh's class goal is to raise $1,100 for the LLS!  Please come out to help support this cause! 

A New Beginning: Phase 5, Maintenance

Yesterday was a BIG day for Kayleigh and our family!   Kayleigh is now officially in phase 5, Maintenance.  This phase began with a lumbar puncture, chemo injected into her spine, and chemo through her port.  She also had her monthly dose of IV antibiotics, Pantamodine.  Kayleigh did well just as she usually does!  She had quite a bit of nausea and got sick in the car on the way home, but she was fine once we got there and the rest of the evening. 

I would like to thank the Almost Home staff and Dr. D for keeping things moving yesterday.  We're usually there 8:30 (sometimes earlier) until at least 4:00 and Kayleigh was released at 2:30. :)  I think this was record time for us!  Everyone is wonderful at Children's Medical Center.  They're all genuinely kind and caring.  Kayleigh's favorite nurses always seem to find time to stop by even if they're not her nurse for the day or even on the same floor.  I do know that she is in very good hands.

Wow, though!  I have to say that my head has been swimming ever since we left.  Kayleigh entering phase 5, Maintenance, is exciting, but also very scary due to the parent responsibility.  This part of the treatment road map will last 18 to 20 months.  It will include lumbar punctures every three months, chemotherapy through her port once a month, and three medications at home (+ if she needs others to help with the side effects).  Each lumbar puncture signifies a new part of the phase.  My head is swimming because of the 3 at home meds, all chemotherapy.  One medication she gets 5 days per month, that's the lovely steroid.  Another she gets once a week and involves her taking 8 pills, Methotrexate, which her counts are too low to begin, next Friday is tentative start date.  The last one is a daily chemo pill and a half of 6MP.  The thing is each one has to be taken at a certain time, some with food, others without.  Also, since her counts are low, we're not to give the full dose of 6MP until given permission.  We're not to follow the labels on the bottles, but go by the notes I took, which I really hope were thorough.  I do try to be thorough and Jason remembers some things from memory.  Kayleigh's medication is just so important and I fear missing a dose or giving the wrong one at the wrong time.  I created a very handy calendar last night with each medication written on the day and time it should be taken and a place to check it off.   I typed my thorough notes at the bottom.  It actually looked pretty impressive!  A calendar like this will be taped on the side of our kitchen cabinet next to our sink for the next year and a half or more.  I'm hoping it will work and help keep me and Jason on top of things.  I will do my best to stay positive and help Kayleigh get through this.  She's done so well so far, and really so have I, better than I thought I would handle all of this (aside from a few meltdowns when I'm alone).  Our test has been and will continue to be in God's hands.  I think I always knew the strength in prayer, but now know firsthand just how powerful prayers are.  In fact, I finally found time to read a book yesterday while at the hospital.  It was written by the parents of a little girl named Micah.  Early on after Kayleigh's diagnosis, she received a Micah's Hope backpack filled with things to bring her some happiness.  In the backpack was the book.  The book includes Bible passages and prayers, along with the journey Micah's parents went through with her.  The book was very inspirational and gave me something to relate to.  It reminded me just how important and powerful God and prayers are.  Thank you to Micah and her parents for sharing their journey and inspiration.

A Hair Raising Question

So Kayleigh's done quite well as far as hair loss is concerned. In the beginning, she was losing quite a bit of hair so we had her hair cut in a shorter style. She looked very cute too! Then during delayed intensification, her hair fell out more and more until she asked to have her head shaved and so we did. What a cute, perfectly little round head she has! She's just as cute as can be if I might say so myself. :) Her doctor told us that after the dose of cytoxan she had on January 27th, her hair would completely fall out in 3-4 weeks. Well, she still has quite the chickadee fuzz on top of her head. She does have spots that have no hair though too! This weekend other hair has begun to fall out, her eyebrows and lashes. This really makes her look different! She now only has eyebrows from the midpoints to the outer edge and eyelashes are missing here and there. I guess I didn't think about this hair falling out. She still has a few days until it's been four weeks since the cytoxan. I'm wondering if she's going to end up losing all of her hair as the doctor said she would or beat the odds.

Her Counts Went UP!

Wow!  Here I am again!  Twice in one day!  We just received the phone call with Kayleigh's results and boy was I surprised, but very pleased.  None of Kayleigh's counts went down from Friday's results!  They all went up! :)  Her WBC went up from 1.1 to 1.5, hemoglobin from 8.6 to 8.9, platelets from 295,000 to 365,000, and ANC from 460 to 770.  It was the platelet and ANC counts that mattered for her scheduled LP (lumbar puncture) and chemotherapy.  They're both in the "good" zone and so we will spend tomorrow at the Almost Home unit with her entering phase 5, Maintenance. *sigh*  :)  :(  :o  I'm a bowl full of mixed emotions for sure now!  My wishes came true that the show is back on the road, so to speak.  Yay!  However, with that I think comes more worries.  All along, she's been either at AH or the clinic at least every two weeks or so.  Now, she'll only be there once per month to have her blood checked and be sure she remains in remission.  Also, most of the chemotherapy, aside fro the once per month visits, will be administered at home adding a little more stress.  I believe she's going to be on three types of pills, all given for different lengths of time, one only one day per week, one for five days per week, another for five days per month.  We have to be consistent!  I must remain positive, just as our amazing little girl is all of the time.  Please continue to keep her in your positive thoughts and prayers.

Finally, An Update

Happy Belated Valentine's Day!  Happy President's Day today!  So sorry it's been so long since I've last updated you all.  I let the past 10 days slip away!
Well, since I last updated you, which I believe was the day Kayleigh received the red blood transfusion, she has continued to have to go for CBC's (complete blood counts) every 3-4 days.  This is done for two reasons.  The first, making sure that her counts are going up and not down.  If they go down too far, it may mean more transfusions.  The second reason is to make sure her ANC reaches 750 and platelets 75,000, so she can enter phase 5, Maintenance.  As of right now, this is scheduled for tomorrow as a lumbar puncture and chemotherapy.  I took her this morning for her CBC and so we're now waiting for the phone call.  I have to say that I don't think she's going to make counts, but could surprise me.  The reason I don't think they'll be high enough is that her counts last week were low and didn't go up much.  As of last Monday, her white blood count was 1.3, hemoglobin was 9, platelets 82,000 , and ANC was 440.  Her counts were taken again on Friday and resulted with: white blood count 1.1, hemoglobin was 8.6, platelets 295,000, and ANC was 460.  Her ANC only went up by 20, but the platelets are well over what they need to be.  Her hemoglobin was approaching low, as anything below 8 means a transfusion.  It's been nice for her to have a bit of a break, but I think we're all ready to get on with the show.
As you know, this is my therapeutic journal, the way I vent.  I consider myself a very patient person.  You have to be patient to be a working mom of three young daughters, working as a full time second grade teacher.  There have been very few times my heart has ever felt like it was racing, very few times I get frustrated due to lack of patience.  Lately, I notice it's harder and harder for me to be patient, not with my kids (children and students alike), but with waiting.  It's like watching a pot boil, it never boils when you're watching it.  I feel like I find myself just waiting, watching the phone, wondering when we're going to get the call, wondering if it will mean an unexpected trip to the hospital, wondering when Kayleigh can continue on with treatment so we can get closer to the end.  I want to live each day to the fullest, cherishing each moment with my family, and believe me I try.  But more and more often, I find myself wishing time away, wishing that the next year and a half to two years would just be over.  Kayleigh's done remarkably well and I know she'll continue to.  I always try to stay positive, especially in front of her and her sisters.  I just can't help but want all of this to be over though and to have our "normal" lives back.  This winter's made it especially difficult.  As Kayleigh just said the other day, "I'm a prisoner in my own home." :(  With her ANC being low most of the winter, we've been cooped up in our house unable to get out and do anything fun (school for Kayleigh, bowling, movies, swimming, dinner,etc.).  It's just frustrating!  So enough of me venting!  Thank you for letting me do so!
On another note, it is my belief that everything happens for a reason, that people are given a "test" for a reason.  I believe that Kayleigh's is to make a difference in the lives of others.  She has touched so many lives through her journey.  Believe me, she's certainly made me and Jason stronger people.  She's taught her sisters to be brave, strong, and positive, among many other people as well.  She's made quite the difference as a Leukemia & Lymphoma Society Pennies for Patients hero.  The school where I teach has raised more money this year, almost doubling our goal so far, than any other year we've run the campaign.  I know she is helping her school and others to do the same.  She is a remarkable young lady!  She makes us more and more proud each and every day! :)  Thank you to those of you who have made a donation to the LLS for the Pennies for Patients campaign or at any other time.  You too are making a difference!

Fever Time :(

A quick update...the nurse phoned with Kayleigh's counts Wednesday afternoon.  Unfortunately, all counts dropped.  Her white blood count went from 1.1 to 0.5 (low), hemoglobin from 10.8 to 10.4 (okay range thanks to red blood transfusion last Friday), platelets from 51,000 to 43,000 (down from 121,000 last week and low, under 20,000 is transfusion time), and ANC/immune level from 260 to 170 (too low to be outside of the bubble).  The nurse told Jason to expect fevers to come on in the next couple of days.  Kayleigh has had quite a cough for the past two days and today has had a fever just over 100 since she woke up at 6:30 this morning.  If it reaches 101, she will be sent to the ER and be hooked up to iv antibiotics for three days.  Since her ANC is below 500, she'll probably be admitted into the HemOnc unit for the duration.  Once she gets over this hurdle, hopefully phase 5 will be smooth sailing for her.  I'm hanging onto Dr. D's words last week, "...in a couple of months, she'll be like a normal kid."  Normalcy, I long for normalcy, whatever that may be, for her and our family.

Kayleigh remains strong and brave!  We're so proud of her, her strength and courage, and her recent efforts to educate her peers and teachers about all she's going through.  She's an honored hero for the Leukemia & Lymphoma Society's Pennies for Patients campaign.  Her smiling face is on posters in schools all over the area.  She's video messaged a few different schools asking for their help in making the difference in the lives of kids like her.  She's absolutely amazing!  She steals our hearts more and more each day!

Phase 4 is Done!

Well, Kayleigh is officially finished with phase 4.  Wow, these past 6 months have flown by!  Thank goodness!  She did well with all of her weekend chemo doses.  She seems a little tired, but that's pretty much it.  If I understood the doctor correctly, it could take up to 10 days for counts to drop and us to see side effects.  They expect her counts to bottom out from these past four days of chemo.  That means her ANC (immune) level could be 0!  Yikes!  I'm not sure though the counts will drop too drastically since she did receive a red blood transfusion on Friday.  So, now that she's at the end of this phase, she will have to go every 3-4 days to have a CBC (complete blood count) done.  Her counts have to be at or above a certain number, 750 for her ANC and 75,000 for her platelets, in order to begin the fifth and final phase, Maintenance.  This is the longest of the phases, a year and a half to two years, but less intense than the others.  It will begin with a lumbar puncture and chemo at the Almost Home unit.  She will return to the clinic once a month for chemo, except for every third month, then she'll be at Almost Home for a lumbar puncture and chemo.  She will also take I believe 3 different medications at home, all varying in amount of days she'll need to take them.  The doctor said after a couple of months, she'll seem like a "normal" kid again. :)  I have to say though, she's always seemed pretty much like herself, except with the steroids in her system causing her to have quite an attitude and not be so nice to everyone.  I guess you can't blame her!  If I were going through all she is, I may not be so nice all of the time either.

Puppy HOPE Caused Some Problems!

Here we sit at CMC waiting for Kayleigh's new blood to transfuse. The afternoon hasn't quite gone as planned.  Kayleigh loves cuddling to her new puppy and Hope loves nibbling. She is the reason Kayleigh's visit hasn't gone as planned. When I arrived home from work this afternoon, Kayleigh quickly approached me saying that Hope had chewed on her tubie. Well, I knew this wasn't a good thing but thought they would just have to alcohol clean it better than usual. WRONG!!! They actually had to deaccess Kayleigh so that the puppy's germs wouldn't travel inside her causing her to get very sick. Once deaccessed, emla (numbing) cream was put on and a 40 minute wait began for it to take effect. The clinic is swamped today due to the cancellations during the recent ice storm, so we were brought back a few minutes late. We arrived at 1:00 and finally by 3:15 the blood transfusion began. It will take 2 hours for the blood to transfuse, then a saline flush will follow, and finally Kayleigh's ara-c (chemo) will be given. So we'll be here a little longer today than planned but that's okay. Kayleigh's in fairly good spirits and who knows, may even decide to write a book about her nibbling puppy. :)

Treatment Today

Kayleigh was able to get her treatment today and she's done okay with it so far. Her blood counts did go down though and as suspected, she will be heading back to CMC tomorrow for a red blood transfusion. They will also administer her second day of ara-c, chemo. The homecare nurse will then come each day of the weekend to give her additional doses. These are the last treatments for this phase. :)

4 Days of Chemo

Kayleigh has had an overall good week. After her lumbar puncture last Thursday, she received three more days of chemotherapy (ara-c) at home given by a homecare nurse. Kayleigh was pretty sick from the chemo she got at the hospital and had some nausea on the second day. Since then, she's been very happy and full of energy wanting to dance around the house. What a beautiful, heartwarming, hopeful sight! Today she has a bit of a cough and dark circles under her eyes, so I'm wondering if she may need a blood transfusion. She goes to the clinic tomorrow for labs and chemo. We've not been told if she's count dependent or not. If they give her the chemo, then she'll remain accessed and receive three more days of chemo at home once again. I'm not sure what the plan is after that because the doctor hasn't gone over that part of her roadmap with us. Thank you for continuing to keep her in your thoughts and prayers.

Pennies for Patients Hero

I'm not sure if we've shared this with you yet or not. Kayleigh is an honorary "hero" for the Leukemia & Lymphoma Society's Pennies for Patients campaign. She let me video her sharing a message to use at my school, her school, our neighbor's school, and a generic message for the Leukemia & Lymphoma Society.  I just know Kayleigh's going to make a difference!  I believe that making a difference in the lives of others is why she was put to the test of fighting cancer.  We're so proud of our strong, brave, positive little girl!

Thank You's Due

Good morning bright and early! I couldn't sleep well on the couch and worrying about Kayleigh. I don't think I've done this on here in a while so I want to send out a huge thank you. I've tried to be good about handwriting them and Kayleigh has too, but somehow we've gotten behind. So here goes...
First of all , I'm not sure if any of Kayleigh's doctors or nurses read this but in case you do, thank you for all you've done for Kayleigh. Thank you for your kind, caring ways. Thank you for comforting her and putting up with her when she's stubborn, disrespectful, and at times beligerent. This is not Kayleigh when she's acting this way, which I'm sure you already know. The entire staff at CMC is amazing! Thank you for all you do.
Thank you to all of our family and friends, even friends of family and friends for sending Kayleigh and our family continued sunshine, prayers, love, and hugs. Kayleigh enjoys the bits of sunshine you send her through the mail and online.
Thank you to GS troop 30202 for bringing us dinner on Mondays and Thursdays. This has taken an enormous weight off my shoulders and is much appreciated especially on days like yesterday when we're at the hospital all day. I can't thank you all enough!
Thank you to my team and colleagues for your help, support, and friendship. You're all helping me get through this.
Thank you mom and dad for helping us out do much with the girls! We appreciate you more than words can express.

At the Hospital for Treatment

Here we sit at CMC! What a long day! As usual, Kayleigh's been quite the trooper! She amazes me more and more everyday! We arrived at 7:30 this morning. She was taken back for her lumbar puncture around 11:30. She did well during the procedure. The "loopy" meds placed her in a jungle with a monkey wrestling her and she won. :) Once back in her room, nausea kicked in. She never got sick thanks to nurse TK comforting her and talking her through it. She wasn't even Kayleigh's nurse today but stopped by many times to check on her. All of the staff here at CMC is wonderful! Since the lp, Kayleigh's had two different chemotherapies (1 push, ara-c, 1 infusal, cytoxan). She's now receiving a 4 hour flush of fluids to clear the cytoxan so it doesn't harm her bladder/kidneys. She has about an hour left and should finally be discharged around 6:00. A homecare nurse will be visiting our home for the next three days to give her a dose each day of ara-c so she'll be leaving here accessed.

Just a Little Update

Just a little update to let you know that Kayleigh still has her cold. She has quite the cough! She's had no fever which is a blessing, no trips to the hospital. I did call the clinic to see if I could give her some cough syrup and got the okay. It seems to be helping! We were told to take her this Tuesday or Wednesday for bloodwork. If her ANC and other blood counts are okay, then she's scheduled for a lumbar puncture and chemotherapy this Thursday. I'm wondering if her cold will cause her ANC to be too low and she will once again be delayed. Delays are to be expected during this phase, but still cause worry.

What a Day!

Wow!  What a day!  Kayleigh was scheduled for a lumbar puncture and chemotherapy today.  When we arrived to the hospital this morning, we were sent to have labs drawn.  This was a little confusing to us, because they normally draw labs right there in the clinic or Almost Home unit.  We followed our instructions and went downstairs to have labs drawn.  We then headed back upstairs to wait.  We've gotten pretty good at waiting patiently, I think.  Each step of the way depends on the results of the previous step, so these days take a bit of time.  We had hoped that Kayleigh's counts would all be good and she could receive today's scheduled treatment.  Well, her blood counts were okay, but her ANC level dropped from over 700 to 360.  It needed to be at least 750 today for her to receive her treatment.  Therefore, she's now delayed which I guess is to be expected since the name of this phase is "Delayed Intensification".  Kayleigh was able to get her antibiotic through her port.  She now has to go to have blood drawn next Tuesday and if they're okay, she's scheduled to haver her lumbar puncture and chemotherapy on Thursday.  I'm a little worried about what follows this, I'm not really sure Kayleigh heard the doctor mention it.  It sounds like she's going to leave the hospital accessed after her lp and a home-care nurse will come for 4 days in a row to give her chemo through her port at home.  Sounds intense, again "Delayed Intensification"!!!  We'll just have to wait and see!  She's been such a trooper through everything from the day she was diagnosed to this past Monday when her hair was falling out so rapidly that she made the decision to have it shaved.  Our little girl is so amazing!  She's positive, brave, strong, beautiful, and a whole lot more.  She's definitely made us stronger!

A Message fro Kayleigh

Hi! It's Kayleigh!  You'll never guess what Special Wish gave me last week!  I got a letter from Jane O'Connor, the author of Fancy Nancy books.  She told me how good my stories on Caring Bridge are and that was very important to me.  She also told me to keep writing and to never stop.  I will never stop writing!  I hope I get to write with Jane O'Connor or another author sometime.  That would be nice!

And you know what, guess what I did yesterday?  I shaved my head, well I'm not exactly bald, I have fuzz.  My hair was really bugging me because it was falling out so much.  It feels weird now!  My daddy shaved his head too for me, but first we had the lady give him a mohawk.  It was funny!

Today I have to go get a blood test to see if my blood is ok.  My cold is mostly better but I've been really tired lately.  I'm happy my sisters are home with me today because we have a snow day.  The snow is really pretty!  It looks like a marshmallow world!

Another Update

Good morning!  I wanted to quickly share with you, that despite Kayleigh's cold, she was able to receive her chemotherapy treatment yesterday.  Our trip to Children's began with a stop at Special Wish to pick up a very special envelope that was sent there for Kayleigh.  She made me promise not to share what it is, but I can tell you that it put the biggest smile on her that I've seen in a very long time. :)  Hopefully she'll feel more up to writing on here this weekend and can share everything with you.  Her blood levels did drop this week, but thankfully not low enough for any transfusions.  Her ANC (immune) level also dropped quite drastically.  It should be at least 500 and was actually over 6,800 last week.  Yesterday, it was only 290, which means she's more susceptible to catching things.  :(  So we have to be extra careful right now with her.  Kayleigh will get two weeks off from chemo and her treatment will be taking her steroid pills at home.  She is scheduled to have a lumbar puncture on January 19th.  Please continue to keep her in your thoughts and prayers.

Not Feeling Well

Kayleigh has not been feeling very well the past couple of days. :(  She has what would be considered the "common cold" but for her seems magnified.  Her temperature went up yesterday to 100.7 and so we thought we were on our way to the ER.  When I called and spoke with the doctor on call, he said to call back if it reached or went above 101.  I was following my notes when I called which said 100.5 at the beginning and end of an hour was considered a fever, but have to say I'm very relieved we didn't have to go to the hospital.  Kayleigh doesn't have a fever this morning, but was woke up by a severe nosebleed.  I've never seen anything like it.  Not to gross you out, but it was fountaining and squirting out.  I think it scared her, me, and her dad.  We were able to get it under control within 10 minutes or so.  I sure hope we don't have anymore of those to deal with.  I also hope it doesn't mean her platelets might be low, as I think excessive bleeding can mean that.  Hoping it's just all sinus issues and possibly the dryness from our furnace.  Please say a little prayer for her that she gets over this cold quickly and is able to continue with her treatment as planned on Thursday.