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!!!
