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.