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.