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.