Kinslee has "kicked" another phase!!!

Cason and Kinslee both were sick the week of Valentine's.  I was worried Kinslee's counts were going to be low since she had been sick but they were right where they needed to be.  She had her last treatment of this phase on February 20th.  It was a smooth day for Kinslee!  We celebrated with ice cream in the car on our drive home!  Kinslee has felt so good since last Thursday's treatment.  She is usually really tired a day or two after but it doesn't slow her down much!  I had posted that the next phase would start on March 6th but I was wrong(my calculations were off a little)...it will start on Monday March 10th as long as Kinslee's counts are good.  So Kinslee has a nice little break before we begin the dreaded phase "Delayed Intensification".  She will have her counts checked this week on Thursday to see how she's doing after her chemo treatments last week.  Then the following week she will have counts checked again on Friday March 7th to make sure she meets the requirements to start the next phase of treatments on Monday the 10th.  On the first day of this next phase Kinslee will have an ECHO test, spinal with spinal chemo, 2 IV chemos given through her port and she will begin steroids again for 7 days.  One of the IV chemos Kinslee will receive is a chemo she has never had before and that makes me nervous.  It can cause slight damage to the heart muscle that is unlikely to have any noticeable effects on heart function therefore she will have an ECHO test done the first day and again sometime during this phase to monitor her heart.  Just like any other chemo drug there are many side effects involved with each one such as nausea, vomiting, hair loss and fewer white blood cells, red cells and platelets in the blood.  However, this particular chemo drug makes me much more nervous.  She has handled and tolerated everything so far and I pray that she continues to keep doing so well.  We are so happy to have the first 3 phases completed!  She only has 2 more to go before making it to maintenance!  Again I want to thank everyone for your continued prayers of healing for Kinslee.  Thank you thank you thank you!!!!   

        

Spinal and chemo

Yesterday (February 10th)... Kinslee had a spinal (lumbar puncture) procedure and chemo in Ft Worth.  We traveled the day before to stay the night in a near by hotel because of her early morning appointment!  and boy are we happy we did!!!  The weather has been so crazy here lately!  Bring on warmer weather please!!!  Everything went pretty smooth at Kinslee's doctors appointment.  She does not like having her port accessed and she probably never will but I can't blame her!  It's a very scary thing for her and she's so sensitive about it!  It does not hurt her in any way but is very uncomfortable for her.  I put a numbing cream over her port so she does not feel the needle stick (thank goodness).  I really think the dressing they put over it once accessed is what bothers her the most!  Her counts looked great!  ANC was 930...in the range where the doctor wants it to be (750 to 1500).  The spinal went really well!  She has not had a spinal procedure since December 5th so I was worried about it but she did awesome!  They have a new huge tv in the procedure room that you can watch 3D videos on so that helped Kinslee relax while we sat and waited for them to begin.  She was such a big brave girl wearing her gas mask breathing the gas in and out during the spinal and spinal chemo treatment!  They brought her Cheetos and pizza (her request) after the spinal and she watched Mickey Mouse laying on her back while "recovering".  They also gave her the two IV chemo treatments while she was enjoying her snack and Mickey.  We were done and out of there by 11 o'clock but decided not to head home on I 20 because of the weather.  We decided to not take a chance with two kiddos in the car because we had heard the roads were very slick between Ft Worth and Abilene so we traveled on to Comanche to be safe.  We ended up heading home around 4 o'clock because we knew it was only going to get worse!!!  The roads were not bad between Comanche and Abilene so we made it home safe and sound!  Kinslee has felt really good today :)  no fever and we are praying she stays that way!  She has one more chemo treatment for this phase.  It is scheduled for February 20th @ 1:30 so it will be a day trip to Ft Worth for us.  The next phase should start on March 6th if all goes well.  I can already tell you I am not looking forward to the next phase called Delayed Intensification.  This will be a very intense phase for Kinslee so please keep those prayers coming.  Thank you all for caring so much for Kinslee and our family!  We are so thankful for your continued support love and prayers!  I thank God everyday for blessing our family with amazing family and friends!  Hope everyone stays safe and warm in this icy weather!      



   

Update: Kinslee is Kickin It

Kinslee has had two more treatments in Fort Worth since her first treatment of this phase.  We traveled to Fort Worth on Monday January 20th for the day.  Her appointment time was at 11 with Dr. Ray.  Accessing her port was very stressful!!!  She had a rash on the area around her port due to her sensitive skin which is allergic to either the dressing or stuff they use to sterilize it.  It was hurting her really bad :(  I wanted to cry for her!  Other than that she had a smooth day.  Her ANC was 3,740!!!  We were so happy that her counts were so high!!!  The minute we got home her nose started to run.  The next day she had a low grade fever and was really tired but she felt wonderful the rest of the week.  Kinslee and Cason had runny noses due to allergies most of the week and of course the drainage caused them to start coughing but no fever!  And it did not slow her down any!!!      

10 days later on Thursday January 30th, I took Kinslee for her most recent appointment and chemo treatment in Fort Worth.  Clay had to work in Midland that day so my mom rode along with us for support!  Her appointment time was at 1 with Dr. Ray.  Accessing her port was much easier this time!  We were able to get Kinslee's rash all cleared up before this appointment!  Thank goodness and thanks to a family friend who sent us some lotions to use on the rash!!!  Thank you so much Ginger for sharing...it worked wonders on her skin (in case you are curious...it's Rodan + Fields)!!!  Her ANC was 1,270!  Still great but probably lower because of the allergy symptoms she had the week before.  She loves playing with the toys in the infusion center where she gets her chemo and never really knows she's getting a treatment :) (it's probably the easiest part of her day).  Kinslee felt great the day after but was really wiped out yesterday!  Today she has played and played by herself all day because her bubba is at his W and Gigi's house.  She has felt so good today that she decided she didn't even need a nap!  Thanks Kinslee!

Our next appointment is scheduled for February 10th at 7:30am.  Kinslee will have another spinal along with spinal chemo and IV chemo.  Prayers of comfort for Kinslee during and after her procedure, travels, and high ANC counts would be greatly appreciated for this day!

Thank you all for the continued prayers for our little fighter Kins!  She is doing so well...I tell people all the time that you would never know she was sick!!!  She is kickin it and we know she will continue to kick it until she WINS this battle!!!! 

Kinslee and Cason playing with "snakes"

 

My little Diva loves to swing!!!

Playing dress up after getting home from treatments in Ft Worth

Kinslee and Tech

 

Playing with ponies while getting chemo treatments

 

Interim Maintenance I

Last Thursday (Jan 9th)...Kinslee started the next phase of treatment (Interim Maintenance I).  We were so happy that her ANC jumped from 320 to 1700 in one week and she was able to start her treatments again.  As nice as it was having a "break" starting this next phase of treatments means we are that much closer to getting to the end of this long journey! 
She was not happy that morning because the nurse tried drawing blood from her arm and hand but was not able to draw blood so she ended up accessing her port to draw labs for blood work.  We headed home until it was time for her appointment at 3:15 with Dr. Ray.  She did not like having her "noodle" in her port all day (we left her port accessed for the rest of the day)!  But in my opinion she handled it really well for a 2 year old!  After meeting with Dr. Ray I felt really good about this phase of treatments.  He said as long as she stays well that her counts should be high enough for chemo every 10 days for the next 56 days.  We also discussed setting up our appointment in Ft Worth for our next treatment because I feel it's not worth the risk stepping foot into the hospital for treatments here during sick season.  So we scheduled her next appointment in Ft Worth on Monday the 20th.  The plan is to go to the Cook clinic here tomorrow morning for a finger poke to check counts.  If her ANC is 750 or higher then she will be able to get chemo on Monday in Ft Worth. 
Kinslee seemed to feel good on Friday but on Saturday she was wiped out.  That night right before dinner, Clay noticed she felt hot.  She had a fever of 100.9!  We went into panic mode!  If she has a fever of 101 or higher we are instructed to call the doctor and more than likely head immediately to the hospital for antibiotics.  Luckily, after an hour and a half the fever completely went away on its own.  We are also not able to give her Tylenol because they don't want us to cover up any possible infections.  She woke up during the night with a low grade temp but woke up the next morning without a fever and has not had a fever since.  I think the chemo causes her to have a fever sometimes.  She has felt so good this week.  If she continues to handle the chemo well each time they will increase the dosage of both meds little by little. 
Thank you again for your thoughts and prayers for Kinslee!  There is no doubt in my mind she's got this and with God on our side she will kick it!!! 

Kins playing dress up with her jewelry :)

Update and Christmas

We had a wonderful Christmas at home in our pjs watching Cason and Kinslee play with all their new toys!  I think it was the best one so far!  It was very nice and relaxing!  We hope you all had a very blessed day as well!  Here are a few pics from our Christmas eve and Christmas day :)

Kinslee got a Doc McStuffin doctors kit from Santa

(She said she was Dr. Ray...her HO doctor:)...

she was giving Olaf her new snowman a check up)

The day after Christmas it was back to the clinic for a blood check (finger poke).  The plan was to go home and wait for labs to come back and if her counts were high enough we would be meeting with her doctor from Cook via teleconference then sent over to the Children's hospital at Hendrick for chemo here in Abilene.  Unfortunately, her ANC was only 100 (needs to be 750) so Kinslee did not start chemo.  The doctor thinks the chemo has wiped out her bone marrow (which means it did it's job) and it's taking Kinslee's a while to recover.  He said some kids bounce back quicker than others.  So we are happy about the fact that the chemo is working but ready for her body to recover so she can begin the next phase of treatment!  Since her numbers are so low this means we are afraid to be around others!  Clay and I are scared to go out in public ourselves when her numbers are so low!  We don't want to take any chances of getting sick and bringing home germs.  We wish we could see our friends and family,  get out of the house and go to church but that's just not possible right now :(  We love and miss you all so much!!! 

Kinslee has felt so good this month!  She has played and played (before all she wanted was to sit in my lap all day)!  It has been such a blessing and great ending to our crazy year!  Please continue to pray that her counts go up so that tomorrow she can get the chemo she needs to begin this next phase!  Thank you for your continued support!!!  We love hearing that so many are praying for our baby girl!  It's so encouraging to know that so many of you love and care for us!!!  We could not have gotten through this year without all of you!  Thank you so much from the bottom of our hearts!  Hope everyone has a blessed, happy, and healthy New Year! 

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!!!