Kinslee's "break" from chemo

Since I last left you guys we were about to head to Ft Worth for another spinal (Dec 5th).  Things went great that day.  Her counts were good and she did awesome during her spinal procedure.  This was the day the ice storm was moving in so we asked the sweet nurses if we could get in and out so that we could make it home in time before it hit!  They were wonderful and made it happen for us!  We were in and out of there and home just in time!  We were looking forward to the next week because we knew we had a week off from treatments!  It was a wonderful week for Kinslee other than being home bound all weekend because of the crazy weather!  The weather didn't bother us too much because Kinslee felt so good and played like a typical two year old :)  I was so thankful for a weekend of rest and relaxation!!!  And having my baby back to feeling like herself again :)

Cason got to ice sled behind the ranger which he loved!!! 

Kinslee thought she wanted to but when we got dressed for it she didn't want any part of it. 

We were probably outside long enough to take a few pics!  It was too cold for us girls!!! 

 

Last Thursday (Dec 12th) Kinslee had a check up here at the Abilene Cook Clinic with a doctor from the Cook Clinic in Ft Worth.  She started having a runny nose and cough that week but the doctor said she looked great and sounded fine.  He suggested zyrtec but I had already started that earlier in the week.  My kiddos usually have really bad allergies this time of year so I usually give it to them the minute they get a runny nose.  They didn't have to check her numbers that day but she had been feeling so well that we weren't concerned.  She was very happy about this clinic visit because they told her no pokes :)

 

happy girl after a great check-up :)

Kinslee running around and playing dress up in her

 "Super Kins" Minnie Mouse costume!

A special Thank you to Hailie Hubbard for the awesome Minnie Mouse super girl cape!!! 

She loves it!  She runs around saying "Super Kins" and "Fighter Kins"

matching Christmas jammies :)

Always being silly!!

 

They can be sweet to each other sometimes :)

 

We celebrated Wednesday night (Dec 18th) Kinslee's last dose of her oral chemo she was on for the past 28 days (which she handled very well after I figured out she needed a little nausea medicine with it at bed time every night)!  Then on Thursday we were supposed to start the next phase called Interim Maintenance I but Kinslee's blood counts were way too low to start this next round of chemo!  We were very sad about this but this is something that is going to happen here and there!  Leukemia is a number's game.  That's why they check her counts each week.  We were just blindsided by her numbers because she has been feeling so good and hasn't been sick.  Her ANC (Absolute Neutrophil Count) was 200 and has never been below 1100!  Anything below 500 is considered very high risk for infection! :( So we were shocked!  Since she has never had low counts we had no idea how she would feel with low numbers so we just assumed her numbers would be good enough to get her chemo and start the next phase of treatment!  We will check her counts again next Thursday after Christmas and if they are 750 or higher she will get her chemo treatments and begin Day 1 of 56 days of this next phase!  She will be getting chemo every 10 days during this phase as long as her counts are high enough so please pray that her counts come up this week so we can begin treatments and that they continue to stay high so that her body is at a lower risk for fighting infections!  On day 31 of this phase she will need to go to the clinic in Ft Worth for another spinal and chemo but she can have all other treatments here in Abilene during this phase!     

 

We are happy to have a happy little princess to celebrate Christmas with this week!  Unfortunately, we will only be celebrating Christmas as a family of four!  Sadly we can't be with our families since her numbers are so low!  We have to limit her exposure to others right now because her body doesn't have the ability to fight off infections.  Hopefully her numbers will be high enough soon so we can get together with our families to celebrate!  We hope you all have a very Merry Christmas!  Thank you for all the love and support!  We love you all!

 

  

Thanksgiving week

Just wanted to give everyone a little update on how things have been going on in our world lately!  So here I go...After the ER visit during the bad weather unfortunately things didn't get much better after that little visit!  She continued to run fever over the weekend and on Monday the week of Thanksgiving she had a fever of 101 so the doctors wanted Kinslee to have more antibiotics.  It was a crazy stressful day but with the help of our wonderful pediatrician and our new "Hendrick" pediatrician (who was also wonderful) we were able to skip the ER and go straight over to the hospital.  We were greeted by our family friend and child life specialist Megan Clifton.  Her sweet face was so comforting to us all :) Thank goodness we were home that night in time to eat dinner and sing Happy Birthday to my Big 5 year old Cason Kole! 

We celebrated W's birthday over the weekend too!

(excuse Kinslee in her night gown please...she stayed in her gown all weekend due to not feeling well)

 

Happy 5th birthday Cason!

 (yes he has the same clothes on two days in a row...

he lived in camo all weekend since we didn't get out due to the cold yucky weather)

 

 

We traveled to Ft Worth last week on Tuesday to stay the night for Kinslee' s early Wednesday morning spinal procedure!  Kinslee had her treatment a day early last week because of Thanksgiving!  They did not have to access her port this clinic visit because she only received her spinal chemo so that was a plus!  They decided a quick blood draw would be much better than accessing her port just for blood counts.  She was so brave wearing her gas mask again last week during her spinal :) I guess she's getting used to it by now!  

 

Thanksgiving was a nice and quiet day for us!  Clay's mom and dad drove out for the day and Linda cooked some delicious turkey and dressing!  Thank you Linda for the wonderful Thanksgiving meal!  We hope you all had a blessed Thanksgiving day as well! 

 

This past weekend was a little rough for us :( Kinslee had a low grade fever all day Friday and Saturday with diarrhea.  Late Saturday afternoon she woke up from her nap with a fever of 101.5 :/  and that put this momma into panic mode!  I was not looking forward to another hospital visit but the HO on-call doc at Cook said there was no need to take her in and that it was ok to just give her Tylenol because it was probably something viral and there was nothing that could be done.  I was nervous but thankful!  On Sunday she only ran a low grade fever and by yesterday she was feeling so much better and fever free :) Today she has been playing with her bubba!  It's been a while since they've played so good together!  I have been getting things ready to make the trip to Ft Worth tomorrow to stay the night for Kinslee's last spinal procedure on Thursday morning for a while!!!  Yay!!!  Next week we should have the week off from traveling and chemo treatments :) and let me just say our baby girl needs a little break!  Anytime we go to get in the car to go grab something to eat or get dressed for the day Kinslee is constantly worried and asking if we are going to the doctor or hospital :(  or asking if she has to take her medicine (she hates taking medicine).  Please pray for Kinslee to continue to have good blood counts and to be healthy so we can stay away from the hospital!  Once again we are so thankful for each of you and every prayer!!!  Thank you!!!



Kinslee is in REMISSION!!!

I'm sure most of you know by now but last Tuesday we got the amazing news that Kinslee is in remission meaning she has ZERO cancer cells left in her blood!!!  It is amazing that in 29 days they can accomplish this with chemo and steroids!!!  Thank you guys for praying for our princess!!!  We are giving God all the glory for answering our prayers and healing!  Our God is an awesome God!!!  Also on Tuesday we had our first clinic visit here in Abilene to check and make sure Kinslee's numbers looked good enough to start the next phase of her long 2 1/2 year journey of treatment!  Her numbers looked great even after coming off of steroids meaning she was ready to start the Consolidation phase.  This phase will be 28 days long.   
We started the Consolidation phase on Thursday and went back to the clinic at Cook Children's for another spinal with chemo injection as well as an IV chemo treatment.  She did so good that day!  She was so brave and didn't cry at all during the procedure :) this was a first for Kinslee!!!  It made the day go so much smoother for everyone!  I am so proud of my little fighter princess!!!!  She amazes me!!!  We also started an oral chemo we take every night before bed.  During this phase we will be traveling once a week for spinals and chemo injections.  She will have a total of 3 spinals back to back!  She's got two more weeks of spinals then she gets a week off!  The next phase is called Interim Maintenace I.  It is an 8 week phase.  It will consist of chemo treatments every 10 days for 41 days.  We should be able to receive most of these IV chemo treatments here in Abilene!  We will be traveling on day 31 of this phase for another spinal and chemo injection.  But we are so excited she will be able to get treatments so close to home :) 
The next 4 months of treatment will be intense but we are praying that she continues to do well handling all the treatments with minimal side affects.  We will also continue to pray for good numbers so that she can stay well and out of the hospital.  Her numbers have been greater than 1000 which means she is at low risk for infection but with flu and cold season here we are going to continue to be homebodies for the next couple of months!  We just can't leave anything to chance and we are totally ok with that!  We have already had to make a trip to the ER on Friday and we do not want to be doing that again anytime soon!  Kinslee was running a fever of 101.5 so we had to take her to the ER at 7:30 pm in the cold and icy weather :( bad timing!!!  They checked her blood counts, did blood cultures looking for signs of infection and gave her an IV of antibiotics.  Thank goodness they could not find anything wrong and sent us home for the night!  It was very scary but such a relief!!!  We are thinking maybe the chemo caused her to have fever!?!  I plan on discussing this with her doctor at clinic on Wednesday!  Hope everyone is having a blessed weekend and that you guys are staying warm in this crazy yucky weather!  Thanks again for all the prayers!!!  We appreciate everyone of them as well as the encouraging calls, texts, comments, cards, and gifts!!!  We are truly blessed with the BEST friends and family!!!  We love you all!!!!

 

 

 

 



Home Sweet Home

Thank you for the prayers on Thursday!!!  We appreciated each and every one of them!  Prayers are definitely being answered....Thanks to our Almighty God!!!!  Kinslee's numbers came back looking amazing!  She is doing so well!!!  Procedures went well!  I got to be with her the entire time!  Not easy seeing her like that but I know it is for the best at this time!  She is a tough little princess!!!  We also got some exciting news that morning!!!  They surprised us with letting us go HOME!!!!  Yes that's right...we went home Thursday afternoon :)  Best surprise!!!  Kinslee was so excited to be going home!  She was ready to see her bubba and puppies!  It was a crazy busy but wonderful day!!!!  The first thing she wanted to do was go outside and swing!  It was cold and getting dark but thankfully Friday was a beautiful day so Kinslee got to get outside and swing in her swing!!!  Made my day to see her laughing and smiling so big :) Cason got here on Friday so it was a fun and exciting day for us all!  Kinslee got to spend a little time with her MeMaw and PePaw too!  We are so thankful to be back in the comfort of our home!!!  Kinslee has also been sleeping better and not waking up asking to eat during the middle of the night :) YaY!!!  She has been hurting a little from the procedure but it's not been slowing her down from enjoying her puppies and being home!  She is like a different child right now!  She is so much happier!!!   Makes this momma's heart so happy!  Thank you thank you thank you for praying!  We know God is hearing your prayers for Kinslee because we can feel them, so please continue to pray.  He can and Will heal her, I know he's preparing her for wonderful things in the future!  We are still waiting to hear back from the doctor on test results!  We should know something by Tuesday!  I have a peaceful feeling that she is in remission :)

"The Lord has done great things for us, and we are filled with joy."  Psalms 126:3

Big Day Tomorrow: Please Pray

As most of you know, tomorrow is day 29!!! This is a Big Day for Leukemia patients!  Please pray that things go well for our princess in the morning!  Kinslee will be given gas for another spinal tap and a bone aspiration procedure.  The bone aspiration tells us that Kinslee is in REMISSION!!!!  Please pray specifically that the cancer is ALL gone and out of Kinslee's body !!!  We will not have these results until sometime next week!   

Day 22: Chemo Treatment Day and A new baby cousin

Yesterday Kinslee got another chemo treatment.  Her numbers looked great :) we are so happy and thankful for that!  We are not only asking God everyday to watch over our sweet baby girl but also thanking him everyday!!!  I cannot say it enough...God is so Good!!!  Thanks again to all of those who continue to pray for miss Kinslee especially on her treatment days!  Thursdays are still very stressful for Kinslee as well as mommy and daddy.  She cries during most of the clinic visit :( but thankfully she does not experience any pain during treatment.  She just works herself up because she is so scared.   We walk in the clinic and she's already crying "all done mommy...all done"!!! :( breaks my heart she has to go through all of this.  On a lighter note...my sister's baby made his big debut yesterday!!!  Meet Jace Alan Apolinar  7 lbs. 14 ozs.  19 3/4 in.  He's perfect!!!  Congrats Alex, Shauna, and Big Sister Aubrey!!!  We are all so in love already!  Kinslee is ready for them to go home so she can go meet her new baby cousin!  She is officially not the baby anymore!!!! :)

sweet baby boy

 

Last Friday we made the move to Aledo into an rv thanks to our friends at Hanner Chevrolet!  Thank you Hunter for making it all possible!!!  We are so thankful for all of our wonderful friends!!! We decided to make the move from the Ronald McDonald House because we wanted to keep Kinslee safe from people kiddos and germs.  We have to keep Kinslee from getting sick or we will end up back in the hospital.  She is very susceptible to infections now so we didn't want to take any chances.  We loved the RMH and have absolutely nothing bad to say about it!  It's a wonderful place but since we had this opportunity we decided to jump on it!  Here is a pic we took the day we said goodbye to the RMH and Mac!

 

Daddy, Kinslee, and Mac

 

We have just been hanging out here in the camper this past week.  It's really nice having our own space.  Kinslee has pretty much been eating anything and everything lately!  She wants to eat all day and night.  The steroids have her wanting to eat all the time!  Last Saturday we met my mom with Cason and I went to pick Kinslee up out of her car seat and she felt incredibly heavier than the day before!!!  It was like overnight she had gained a few pounds!  She almost weighed 30 pounds at clinic yesterday!!!!  She weighed only 24 pounds when we first got here!  She's gained almost 6 pounds!!!  It's crazy!!!  You would not recognize her!  In the last week we have been watching her little body grow so thick so fast!  It makes me so sad but the doctor reassures us it's the steroids and once she's off of them she will probably not eat!  So I guess she's storing up for that time! She has not felt sick at all this past week :) which is a blessing!   The only thing we are dealing with right now are potty issues and her mood swings (also caused by steroids).  Please continue for Kinslee to stay healthy and infection free!!!  Next Thursday is the big day 29 for Kinslee!!!  The doctor will do another spinal and blood sample from her bone marrow.  This blood sample will tell us that she is in remission and has Kicked Cancers BUTT!!!  We will not be given results until the next week so we will be staying here until we get those but after that hopefully we will be sent home.  Please pray that ALL the cancer will be gone by this day.  Thank you all for your love support and prayers!!!  Hope everyone has a wonderful weekend!

 

 

 

 

Day 15: Chemo Day and Halloween

Happy Halloween!!!  Today we are half way through the first 29 days of this 2 1/2 year journey!  Thanks for all the prayers for today's clinic visit!  Kinslee did great!  Chemo day was much easier than I had anticipated!  Dr. Ray said she looked good and that things are moving in the right direction.  He has been so positive about everything.  Our God is an awesome God!!!  Kinslee really likes Dr. Ray.  We love him too.  He has been so wonderful.  He's about the only person that can touch her without making her cry.  She loves the little cow on his stethoscope.  It moos and lights up.  She looks forward to seeing Dr. Ray's cow each time we see him (this might be why she likes him so much :). 

Here is a picture of Kinslee getting her chemo treatment today.  She's still not too sure about everything and everybody. 

 

All the nurses were dressed up like Minions for Halloween.  We tried to get Kinslee to wear her Minnie Mouse costume but she didn't want anything to do with it today.  I finally tried it on her tonight after dinner and this was the best pic I could get of our sweet little Minnie Mouse princess.

 

 

 

Cason has been staying with his Gigi and W this week and has been feeling great ever since our 1:30 in the morning fever scare on Monday/Tuesday.  He went trick or treating on the square in Comanche and also got to go to a Halloween carnival.  He loves Halloween so much!!!  We wish we could have been with him tonight but we know he had a lot of fun and that's all that matters :)  here is our handsome little duck hunter!

 

 

 

 

Tomorrow is moving day for us!  We will be moving into an rv courtesy of our friends the Hanner's!  We are so excited and so blessed.  The Ronald McDonald house has been wonderful and is an awesome place but we feel there are too many people and kiddos around which means lots of germs.   We want to be in a more controlled environment.  We need to be extra cautious during this induction phase of treatments.  We can't take any chances on our baby girl getting sick or we will end up back in the hospital and that's the last thing we need during this time.  We have two more weeks of chemo and then hope to be back home!!!   

 

 Hope you all had a fun and safe Halloween!    

 



Day 12: Monday Oct 28th

Monday we had our first clinic visit.  We had an appointment at 9:30 for a blood draw.  Kinslee was not happy from the moment we told her she was going to the doctor.  She started to cry the minute we walked  in the door.  She is so afraid of anything and everything now.  It breaks my heart!  Her numbers looked good so we didn't have to have a blood transfusion!!!  Yay!!!  It was a big relief for us.  The doctors have been so positive about everything so far!!!

That afternoon the Fort Worth fire department brought over their pink fire truck to the Ronald McDonald House.  They let us take pics and tour the inside.  Cason loved it!  He sat in the drivers seat and decided he might want to be a firefighter.  Kinslee is not too sure about anything right now and didn't want anything to do with it but we took a pic anyway :) 

It was a great day for everyone until that night Cason woke up because he was having a bad dream.  He was so upset and couldn't calm down.  I knew something wasn't right.  He crawled in bed beside me and he was burning up.  I immediately took his temperature and it was 100!!!  Clay got dressed and gathered their things and left as quickly as they could get out of there.  Scared us because Kinslee cannot get sick.  If she has a fever of 101 we are back in the hospital no matter what!  Clay took Cason to Comanche.  They got there around 3ish.  My mom gave him some motrin and he had broke
 the fever by morning.  Dad said he woke up feeling good but I did not want to take any chances so I made him an appointment with our pediatrician.  The doctor said it was probably the start of a cold and put him on an antibiotic but could be something viral and would have to go away on its own in a few days.  We were finally enjoying him being here with us!  Please pray he stays healthy and well so he can come stay with us and we can all be together again.  Kinslee misses him when he's not around.  :(

I had to share these pics :) this is Mac.  He stays at the Ronald McDonald House during the day.  He is the highlight of Kinslee's day!  She loves him!  He is the sweetest dog and loves all the kiddos here!  Wish we could take him home with us!!!

 

Kinslee has had a great week so far!  She seems to be feeling better!  Tomorrow is chemo day.  Thursdays are her treatment days.  It will be very stressful for her and for us so please say a little prayer for us that everything will go smooth.  They will be accessing her port for the first time since surgery.  She's tough but this will not be an easy process for her each time.  We are praying it will get easier.  Thank you for the prayers and love.  It means the world to us to have so many asking God to watch over our baby girl. 





Treatment plan for Day 1 thru Day 29

Thursday October 17th was Day 1 of 29 days.  It was the start of our first 29 days of treatment for the next 2 1/2 years that Kinslee will be Kicking cancers Butt!!!!  On Day 1 she went into surgery and had a port placed under the skin on her chest.  The port is going to be a wonderful but scary thing for Kinslee.  They can access it for IV chemo treatments and blood draws.  The dressing or tape they put over it is the worst part of the entire process!  She hates the tape and I know it hurts her for the nurses to pull it off.  The first day they had to change it out was a very traumatic experience for us all!!!  We are hoping and praying it will get a little easier and she won't be so scared when they have to access it for treatments or blood draws because it is much easier than being stuck over and over again for each clinic visit.  During surgery they also did a spinal tap to check for cancer cells in her spinal fluid.  They also gave Kinslee her first chemo treatment in the spine while she was under anesthesia.  In Kinslee's case there was no cancer in her spine, but they will continue to give her treatments in the spine as a preventative.  The doctors also took a bone marrow sample which told us the type of leukemia she had and that she is low risk.  That night she also received an IV chemo treatment.  It took 5 minutes to give her. 
They also have her on some oral meds.  She takes a steroid twice daily and we have noticed already the steroids make her hungry and moody!  She wants to eat all day long!!!  She loves breakfast and has been requesting sausage and eggs every morning and let me tell she can eat!!!  She was not a breakfast fan before all of this and now it's the biggest meal of the day for her!  She is like a roller coaster of emotions!  The doctors all say it is the steroids talking!  They are also making her little chunky face even puffier (she looks like a cute little chipmunk)!  We had some experience with steroids in the past because Cason had to be on them for several months so we already knew what they would do to her before they told us the side effects.  She has a few more meds she takes on a daily basis and some on a as needed basis.  These oral meds are a challenge but she takes them like a champ and they are nasty tasting!!!
Kinslee's next day of chemo was on Day 4 given thru IV and it took about an hour.  She has done really well with treatments.  In the hospital she was given Zofran thru her IV throughout the day to prevent her from getting sick.  Now that we are out of the hospital it is given as needed.  I have started giving it to her because she has been a little gaggy and not feeling great over the weekend.
On Day 8 the doctor did another spinal tap and this was a rough experience for the three of us.  This procedure was done in a room on the same floor we were on in the hospital using gas.  I was in there with her for this and she cried mainly because they had to hold her down but the gas made her eventually calm so that the doc could do the spinal and give her another chemo treatment in the spine.  Not a good experience for this momma!  After we made it back to her room, she received another chemo treatment thru IV and soon we were sent to our home away from home (Ronald McDonald House).  It was a great ending to a stressful day getting out of the hospital breathing the fresh air outside and Kinslee got to swing!!!  She loves to swing!  It put the biggest smile on her face :)
Tomorrow we will be going to the clinic for a blood draw and a possible blood transfusion depending on her counts!  Please pray for an easy visit and good numbers!!!  On Thursday Day 15 she will receive another chemo treatment thru IV.  Thursdays will be our chemo days!
Day 29 will be a BIG day for Kinslee!  They will do another spinal tap, chemo treatment in her spine and take another bone marrow sample.  The bone marrow sample will tell us that she is in Remission!!!  That sample will show there is no more cancer and the doctor will give us a "road map" for the next 3 or 4 months of intense treatments to prevent the cancer from coming back!  Please pray for Kinslee especially on this day (November 14th).  After this day we should be able to go home!!!  We are staying in the Ronald McDonald house until day 29 so we are close and can be monitored closely during this time as well as receive treatments close by.  She will be able to receive some of her treatments in Abilene once we are home sweet home!!!

Kinslee's story

On October 16th 2013 Kinslee was diagnosed with Acute Lymphoblastic Leukemia (ALL) at 2 years old.  She had been having some leg pain that starting waking her up during the night. I just assumed it was growing pains. Then her foot looked really swollen all of a sudden so I decided to take her to the doctor. The doctor was concerned and ordered blood work to test for West Nile and Mono. Those came back negative and her CBC looked normal except that it showed she was very anemic. Then her elbow and hand started to look swollen so the doctor ordered more blood work to test for inflammation, rheumatoid arthritis and lupus. The inflammation came back positive so the doctor contacted a rheumatologist at Cook Children's Hospital in Fort Worth and she reviewed Kinslee's chart and ordered more blood work to test for rheumatic fever. They thought she might have had a strep infection that went untreated. She also ordered another CBC and that was what brought us to where we are now. Her WBC was very abnormal.  Our doctor had us come into his office ASAP and I knew something was wrong. I walked in and no one could look at me. The doctor walked in asked if there was any way I could get in touch with my husband Clay (who was in New Mexico hunting at the time) and then gave me the worst news of my life. I had my suspicions all along but nothing can prepare you for something like this. It was devastating to hear that my baby girl was so sick. The doctor comforted me and said a prayer with us before we left. Then we headed home to pack our bags to go on to Cooks.  Once we arrived at Cooks they started an IV and did more blood work to confirm that it was Leukemia.  And that is Kinslee's long story on how we found out she has this nasty cancer.