Kinslee starts Maintenance

 

Hello again...I know it has been forever since I last updated you guys!!! but No news is GOOD news right?!?  YES!!!  Kinslee has been doing so wonderful!!!!  She has enjoyed spending precious time with family and friends lately.  She has definitely made my job so much easier during this journey!  I am so very thankful that she feels and looks so amazing :)  Her hair is growing back like crazy!!!  She's got some fuzzy hair on her head now :)

 

I'm so sorry I haven't kept you all up to date over the past couple of months!  I have been enjoying the summer with both Kinslee and Cason!  I haven't really had the time lately to sit down and type!  Time is flying by so quickly with these two little balls of energy!  As you can tell from the pics, we are having a really fun summer and spending most of our time in the pool!  I want to soak up all the time I can with my babies right now because my big boy starts school next month!!!  Cason will be in kindergarten at Wylie and Kinslee will stay home with me this school year.  It is going to be an adjustment for us all but we are looking forward to getting into a routine!  Wish me luck ;) 

 

I have some exciting news...Kinslee has finally reached the phase in treatment we have been looking forward to since day 1....MAINTENANCE!!!!  Hip hip hooray!!!!  We can finally see the light!  This means less intense treatments and clinic visits!!!!  We are so excited to be at this point on this journey with our little princess!  The past 9 months and most intense treatments are behind us now!  Kinslee has 2 more years of treatment starting tomorrow July 17th!  Please continue to pray for Kinslee during this phase because her fight is not over yet.  I will explain in more detail after her appointment and procedure tomorrow but maintenance will include spinals, chemo and the dreaded steroids.  She has to continue treatment to make sure the cancer does not come back!!!  I am so proud of my brave girl and everything she has had to go through to kick cancers booty!  She is definitely my hero!  I hope she has been an inspiration to you guys! 

 

I am so thankful we did not have to walk alone on this journey!  Thank you to everyone for praying, supporting, and loving us every step of the way!  I can't imagine the past 9 months without our amazing friends, family and those of you whom we have not ever met!!!  We love you all!  May God bless you in your lives daily as he has done for us!  God is good all the time!  We have trusted in his plan from the day Kinslee was diagnosed and he has taken care of our sweet girl through it all!   

 

   



4th of July fun

 

Celebrated Kinslee and the start of Maintenance



2 more years!!!  Keep kickin it for Kinslee

 

Kinslee...aka Queen Elsa...loves playing dress up

 

little bathing beauty

 

Rapunzel let down your hair!!!

 

my biggest blessings from God

 

Pool diva

 

My silly girl...this is so her personality

 

She loves bath time

 

mommy's sweet girl

 

Look at all that hair growing back!!! 

Don't let her fool you...she is a little mess!!!

 

 

 

 

Low counts again this week

Kinslee did not make counts to start the next phase of treatment tomorrow!  Her ANC is only 140.  Lowest it's ever been!!!  Makes me super nervous but we also know this means that her treatments are working.  We will wait a week and check counts again on Monday.  If she makes counts she will begin Interim Maintenance II on Tuesday in Fort Worth.  And if she doesn't she will be delayed another week.  She is still feeling so wonderful!  Thank goodness for that :)  We are so appreciative of all your thoughts and prayers!!!  Please continue to pray that we can keep her fever free since her fighter cells are so low.  And pray for them to come up so we aren't delayed another week!  Thank you!!!! 

Low counts this week

Today we traveled to Fort Worth for a blood check.  Plans were to check them yesterday in the Abilene clinic but our sweet nurse called to let me know she was sick with the stomach bug.  I decided to make an appointment in Fort Worth instead of risk being around her this week.  Kinslee had a nice quick clinic visit but her ANC was 240 which means she's at the highest risk for infection but it also means the chemo she got is doing its job!!!!  She didn't need blood or platelets so that was a huge plus!  She is scheduled to start the next phase on Tuesday but we don't really expect her to make counts.  It may take a few weeks for her counts to come up.  Her ANC needs to be 750 or higher to begin Interim Maintenance II.  We will check counts here in the Abilene clinic on Monday and if she's ready we will begin on Tuesday if she's not we will check counts again the following week.  Please pray she does not have a long delay and that her counts start going up!  She still feels amazing and has had a wonderful week!  Thank you for the prayers!!!  We are forever grateful!

Kinslee has Kicked another phase

Kinslee has kicked another phase of treatment!!!  Monday night we celebrated the last dose of oral chemo for the dreaded Delayed Intensification phase!  AND....We are so happy to have it behind us now :)  Kinslee did great during this phase!  She amazes me everyday!  It's so hard to believe her little body can handle so much!  She has felt so good and is loving playing outside everyday! 

 

 

 

Last weeks 4 days of treatment went well.  Zofran was Kinslee's best friend but as long as she had it every 6 hours while she was awake she was good to go!  Her counts had dropped from the 4 days of treatment from the week before so we didn't get to get out and do anything fun so we just hung out at the hotel all week.  She felt awesome all week and was very playful!   

 

Day 1 of 4:  happy girl

 

Playing with my little ponies while waiting on doctor

 

Day 2 of 4:  My little diva

 

Kinslee pushing her iv pole all by herself

like a big girl

 

Day 3 of 4:  Kinslee ready to head out the door for chemo

(she requested that daddy take her two mornings in a row...

she's becoming a daddy's girl but I think it's bc she's with me 24/7 :) hehe)

 

Day 4 of 4:  Home sweet Home and so HAPPY!!!

 

 

Kinslee will have a nice little break for a few weeks from chemo before starting the next phase of treatment.  Yesterday she had her counts checked and an appointment with Dr. Ray here in the Abilene clinic via telemed.  He was happy with how well she's been feeling :) her counts are in the moderate range for infection (ANC 560 surprisingly up from last Friday when her ANC was 400) and she didn't need blood!  I'm so thankful everyday for the blessings in our lives!!!!  And so grateful that Kinslee is doing so well on treatment.  Next week Kinslee will have another appointment with Dr. Ray via telemed and to check counts.  She should start the next phase called Interim Maintenance II on Tuesday May 13th as long as she makes counts!  Please pray we can continue to keep her fever free!!! Thank you once again for all the love support and prayers!!!  I will never be able to say Thank you enough for all the amazing things our friends and family have done for us!!!!  We love each and everyone of you!  Thanks for getting us through this for Kinslee!!!   



 

 



 

 

 

 

 









Delayed Intensification: Part 2

Kinslee made counts last week so she was able to start the second half of Delayed Intensification on Tuesday (March 15th).  It was a very long day in the clinic for us.  She had a 7:45 am appointment and we didn't leave until 5:30 pm that day.  I'm very thankful we don't have very many days that long.  On that treatment day 1 of 4 she had a spinal procedure, spinal chemo, 4 hours of fluids, two different chemo treatments through her port, and started an oral chemo she takes nightly for two weeks.  They left her "noodle" (port) accessed for the 4 days so that they wouldn't have to poke her each day.  She does not like having her port accessed but it doesn't slow her down any.  She holds her right arm and neck funny the entire time she is accessed but the minute they take it out she's perfectly fine!  (I think she hates the dressing/tape and is very protective of it)  Kinslee had a great day overall and managed to take two naps during the day while we were there.  She got a little sick that night before bed but slept great after taking some medicine for nausea. 

The next day...Clay took her to infusion for day 2 of chemo while I stayed at the hotel with Cason.    They waited longer for her chemo to get there than it actually took to give her.  The chemo treatment she is getting during this second half only takes 15 minutes.  She felt great that day and since her counts were so good we took the kids to the movies early during the day.

Day 3 of chemo...Clay and Cason headed back to Abilene to work so it was just me and Kins.  Unfortunately, her dressing was starting to come off so they had to change it.  She didn't handle that very well but she got to blow bubbles and color Easter eggs while waiting for her chemo and that made her a happy girl.

Day 4 of chemo...When we got there Kinslee got to pick out a stuffed bunny for Easter.  We were only one of three in infusion so we didn't have to wait long for her chemo.  The doctor let us go home for a few days before her next 4 days of treatments.  We were so happy to be home for Easter weekend because last year we were in the hospital with Cason on Easter (2013 was a crazy "unlucky" year for us). 

Kinslee felt great all week long while getting treatments so we celebrated Easter with both of our families on Saturday at our house.  It was a beautiful day!  Kinslee enjoyed the day swinging, hunting eggs and playing with her cousins.  She didn't get in a nap but had the best time she's had in a really long time :)

Thank you for praying for our family during this time!  It wasn't as bad as we had anticipated since we got to go home for a few days!  We are so thankful for each one of you and for the things God is doing for us on this journey!  Hope you all had a wonderful Easter! 

            

no energy...hair loss...hospital stay...tons of energy...and delay...

Here I am playing catch up again!!!  I'm trying to do better but it's hard to find the time to sit down without any distractions!  I want to document Kinslee's journey through this blog so that one day I can share it with her and she can read her story of inspiration!  I want her to know how brave she was through it all!  And that she was a fighter and that we all fought with her every step of every single day!  We all love you so much Kinslee Cate!!!  You are my hero!!!!  I love you so so so much sweet girl!    

week: March 24th-30th
So last I left you...Kinslee was about to get her last round of chemo for the first half of this Delayed Intensification phase and start back on steroids.  That week she started feeling very tired.  She wouldn't play and all she wanted was for me to hold her, so we cuddled a lot and had a very lazy week!  Steroids also started kicking in during this week!  She started eating more, sleeping less and gaining weight!  Her little cheeks and belly kept getting rounder and rounder.   I really hate what these steroids do to her little body!  They make her pretty miserable!  She also gets a little attitude on top of being a two year old girl!!!  She has started calling me Kayla instead of mommy!  It's so crazy because she hasn't done that since the first round of steroids in the very beginning!  She thinks it is pretty comical to call me by my first name and I can't help but laugh!  I love my silly girl!!! 

On Saturday, March 29th...I started noticing hair all over me.  At first I thought it was my hair because I shed really bad anyways but then I noticed it all over Kinslee's back.  I looked in her bed and sure enough there was hair all over her pillow :(  This was the day Kinslee started loosing her hair.  It was the worst ending to a really rough week!!!!  When I finally brushed out her hair that day it was the hardest thing I have ever done!!!  It was coming out and there was nothing I could do to stop it! 

On Sunday, March 30th...I wanted to get Kinslee's hair cut short because I had brushed out a huge mess of tangles from her hair and it was starting to really bother her.  It was itching her neck and head.  I put her hair up in a pony tail to keep it off her neck and I could see that her hair line on the back of her neck was up a lot higher than usual.  Her hair was falling out from the bottom of her hair line.  I ended up not getting it cut that day and I couldn't bring myself to cut it so I thought maybe we could wait a day or two.  Sadly...I was so wrong!!!

week: March 31st-April 6th
Monday March 31st...Kinslee had a doctor's appointment in Fort Worth for blood counts.  The doctor wanted us to be in the Fort Worth clinic in case she needed a blood transfusion (they are expecting counts to drop during this phase).  Clay had to work so he kept Cason and I took Kinslee to her appointment.  Her appointment was at 9:45 so we needed to leave Abilene by 7.  When I got Kinslee up to get her dressed her hair was in a huge matted mess!!!  I tried but I knew there was no way I was going to be able to brush it out!!!  It was very different from any tangles we normally have to comb out in the mornings.  We were in a hurry as usual so Clay ended up doing an emergency hair cut!!!  I couldn't watch as he cut it off.  It was very emotional for all four of us and we all cried that morning!  I would have just tried to put it up for the day and dealt with it when we got home but I'm  thankful that Clay was able to cut it for her!  He did a really good job cutting it into a cute little bob (not on purpose he claims).  Once we got to clinic, everyone commented that they loved her new short hair cut and couldn't believe that Clay had done it!  They were all impressed!!!  It was still coming out and while we were in clinic I noticed my shirt was covered in hair and it was still bothering Kinslee really bad!  I knew it was time to shave it!!!! :(

(Huge matted mess before hair cut)

Kinslee's blood counts looked great so she didn't need a blood transfusion but she had been hurting and complaining when going potty so the doctor decided to admit her to start antibiotics to help prevent infections and knowing her counts were going to start dropping she'd be more susceptible.  She was not happy about having to stay but we knew it was better to be safe than sorry!  Her doctor was being very cautious but that is what we love about him!!!  He takes such wonderful care of her!  That night she was pulling out hair by the handfuls and saying "here mommy my hair is falling out".  So she knew what was happening to her at 2 years old but thankfully it didn't seem to make her sad, but it was a very sad and emotional thing to this mommy!  The next morning she woke up and had what was left of her hair on top of her head in another matted mess!  Clay and Cason showed up around lunch with clippers and we had a "shaving party".  Kinslee was first...she sat on the bathroom counter looking in the mirror as Clay shaved her head.  She laughed and giggled the entire time :) she made it fun and easy for all of us!  She helped shave Clay and watched her bubba get his head shaved!  She loved it!!!  We were all ready for it to go by this time because it had been bothering her so bad!  The doctor walked in while they were shaving and Clay tried to talk him into shaving too!  Dr. Ray said he'd only do it for research :)  he told Clay to get his checkbook out.. (he's got a head full of hair unlike my guys)!   

 

Music fun at the hospital!  She loved it!

 

We ended up only staying two nights at Cook's and when we got home on Wednesday, Kinslee was ready to play!  She had more energy than she's had in a long time!  It was so nice to see her playing again!  Her blood counts had already dropped tremendously from Monday when she was admitted to Wednesday when she was released which means the chemo is doing it's job!  So it was a surprise to me that she was feeling so well.  It must have been the steroids making her feel yucky the week before! 

week: April 7th-13th
Monday April 7th...Kinslee had her blood counts checked in the Abilene Cook clinic.  She did not make counts to start the second half of the Delayed Intensification phase.  Her ANC (fighter cells) needs to be 750 or higher before starting treatments.  Her ANC was only 300 which means she's very susceptible right now.  The doctor has told us to expect a two to three week delay before she's ready to start the second part of this phase.  So now we know where the "delayed" part of the name of this phase comes from.  So we wait another week to check counts again.  Another little break from chemo :) but I'm also ready to get this phase behind us!!! 

Tuesday April 8th...Kinslee had a doctor's appointment in the Abilene Cook clinic with an oncologist from Fort Worth.  He said she looked great and was happy to hear she's been feeling so good :)

Kinslee loves playing dress up in my shoes

Thursday April 10th...Kinslee had a follow up with a dermatologist because she's been having some eczema rashes.  She has very sensitive skin and has a history of eczema but has not had any problems since she was a baby.  The doctor prescribed some steroid creams to keep it under control.  It's already looking so much better!!

What happens next?...
Plan is tomorrow Monday April 14th...Kinslee will have counts checked again in the Abilene Cook clinic (finger poke).  If she makes counts we will go on to Fort Worth to start an intensive treatment on Tuesday morning.  She will have a spinal, spinal chemo, and two types of iv chemo plus start an oral chemo.  She will get an iv chemo for 4 days in a row then she will have 4 days off and finally 4 more days in a row.  We will be staying in Fort Worth during this time.  Please keep us in your prayers over the next few weeks!  We will need it more than ever!!! If she does not make counts again then she will be delayed another week and we will check counts the following week.  I know it's hard to keep up during this phase but it's constantly changing and delay is just part of the process.  Thank you all for your continued love support and prayers for our little fighter!  We appreciate it more than you will every know!!!
  
            

Kinslee had a great week!!!

Just wanted to give everyone a little update on how well Kinslee has been feeling lately.  She had a much better week than the one before.  She has had energy all week and has felt amazing!  She has been eating and sleeping better too!  I'm so thankful for all the prayers.  Thank you from the bottom of my heart!!!

Tomorrow morning, Kinslee has an appointment with Dr. Ray in Fort Worth and will be getting two different chemo treatments through her port.  She has had minimal side affects from these drugs and I pray that she will continue to stay strong during this phase of treatments.  She will also start back on steroids for another 7 days.  It's been a nice break from them this past week but unfortunately she has to start taking them again.  Her counts are also expected to start dropping this week.  Please pray she stays well and free from infections and fevers.  We feel so blessed by all the love support and prayers our friends and family continually send our way!!!  It gives us the strength we need to make it through this journey of healing.  Thank you for EVERYTHING!!!!  We love you all!