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.