Kinsley is a beautiful, typical four year old little girl.  She was born June 25, 2001.  At age two, Kinsley was diagnosed with ataxia cerebral palsy.  Life became a lot more challenging to us at this point.  Kinsley is just like every other child except that she was somewhat delayed in her motor skills and has some balance and coordination problems.  She really has to work on her speech and she works daily on her occupational and physical therapy.  The CP no way affects her mental capacity.  She may learn things a little differently sometimes but she learns them and she learns them well.  Kinsley is in the K-4 program at Sparta Academy and has been on the A honor roll all year.

 

Kinsley is a very determined and strong-willed little girl which I always thought were good virtues to have but never knew she needed these virtues to help her handle what life was about to deal out. 

 

Kinsley's journey with leukemia began on May 4, 2006.  For quite sometime , about 2-3 weeks, Kinsley had not really been herself.  She first developed some dark circles under her eyes and a little puffiness in her face.  Her energy level was lower, she didn't have a great appetite and she began complaining about some pain in her legs.  We had seen our local optometrist and it looked like the eye problems developed because of allergies (not uncommon for this time of year.)  We began eye drops in the eyes and cold compresses at night.  We thought we were seeing a little improvement at times.  The energy level and pain in her legs we thought attributed to the ataxia cerebral palsy.  The appetite never really bothered us  because she is a four year old and sometimes a good appetite is just not in the cards.  As we tried to correct the "allergy" problems we noticed that we were not really improving so the next step was to see our family doctor. 

 

On Wednesday, May 3 we saw our family doctor and again thought we were fighting "allergies."�  We filled our prescriptions and went home knowing the worst part of this was that we may have to at some point see a specialist if these medications did not help.

 

On Thursday, May 4 we all got ready for work, school and Taylor (Kinsley's 9-month old baby sister) got ready to go to Nana's (Kinsley's grandmother.)  When we got to Nana's  house she went and laid down on the couch and said she was really tired.  I decided to let her stay home and get a little "pick me up" rest.  About 9 am I received a call from Nana saying that Kinsley had started vomiting and throughout the day continued to do that.  We called her family doctor and he said that if she did not stop vomiting by 4 pm, he would admit her and try to help her get over what we thought was one of the many viruses going around.  Our doctor had blood drawn once we were admitted and very soon after the results were read we were told we needed to be transferred to Children's Hospital in Birmingham (CHB).

 

As a mom, I didn't know what was about to hit us.  I knew something was really wrong because of all the concerns coming from the nurses at the hospital but never imagined what was yet to come.  We were transported by ambulance to Children's Hospital in Birmingham.  Once we arrived at CHB around 11:30 pm, Kinsley was immediately placed in Pediatric Intensive Care Unit.  Tests were run and the doctor on call began giving us an idea of what we could be faced with.  This doctor on call explained that Kinsley's kidneys had completely shut down.  They had to get her potassium down along with her many other problems.  As we waited it seemed like an eternity - when you are in a foreign environment and know that one of your children is in serious condition.  The  doctor on call then told us that he felt like Kinsley was probably facing a type of cancer- either leukemia or lymphoma.  He state that the oncologists would be the ones to give a final diagnosis but he felt he was right. 

 

On Friday, May 5, everything we were told was now becoming a reality.  Daniel and I met with the oncology doctors and they confirmed that we were looking at some type of cancer, leukemia or lymphoma.  They said tests needed to be run but we needed to start immediately to determine how to treat the cancer.  They drew bone marrow out to help determine the type of cancer she was fighting.  The diagnosis came back as T-cell ALL (Acute Lymphonic Leukemia.)  She has the cancer cell all over the body and they knew they needed to try to start controlling it as soon as possible.  However ,her kidneys were also a very big issue.  They began dialysis in order to try to make her kidneys start to function again.  We were told that if we had not brought her in when we did, she would have died at home the next day - that is a big reality check!!!!

 

Saturday and Sunday, Kinsley continued to stay in PICU.  Her kidneys were still a big problem but they were still giving her medications to try to get rid of all the excess fluid.  They also gave Kinsley her first round of chemo Saturday.

 

The oncologists went over all the chemo with Daniel and me, including Kinsley's "road map."�  This road map is basically a guide on what we will be doing for the next 2-3 years.  She will have some type of chemo every day for at least 2 years at home.  She will come back to Birmingham at least one day a week for treatments during this 2 years.  Some visits will be daily visits, some overnight, and some for at least a week.  She will have to have radiation during this treatment period and there is one week within this treatment that she will have chemo inserted in her muscles.  This was explained to be a very painful experience for Kinsley; fortunately, this is really the only chemo that should cause her much pain.  Just the list of chemo meds was overwhelming, but to hear the medications she needs to be given to help counteract the chemo was unbelievable!

 

For the next 3 days Kinsley was given her first round of chemo.  One Sunday they had to move Kinsley to an isolation room in PICU because the chemo had broken down her immune system so that she was highly susceptible to infection.  It seemed like she was being given some type of medication every hour and they drew so much blood in order to keep track of what her little body was trying to do.  Sunday we began to have a real problem with blood pressure, it continued to rise and wasn't coming down with the medication.

 

Monday night they decided to move Kinsley to a room on the cancer floor (4 Tower.)  We were extremely excited because now we didn't have to leave her.  However, we know we still had a lot to overcome before we could say we just had to concentrate on the leukemia. 

 

Tuesday, May 9, Kinsley seemed to have a pretty good day.  She talked and even laughed a little throughout the day.  We still hadn't been able to make her eat though so we were getting a concerned about that.  But Tuesday night, Kinsley said she wanted Pizza Hut.   At this point she could have told me she wanted to moon and somehow she would have gotten it!  She ate about 7-8 bites and then we tried to settle down for the night not knowing what we ahead.  She began getting sick that evening and then other things seemed to grow.

 

Wednesday she started having problems also with her breathing.  The fluid was still so great in her little body that her breathing was starting to suffer.  Fluid had started surrounding her lungs and we had to get it off!  Her blood pressure also continued to stay high and would not go down even with the medication we were trying.

 

Wednesday and Thursday were really bad- Kinsley continued to be very sick and her breathing became harder and she started needing little oxygen to help her not work so hard.  By the middle of Wednesday night, they transferred her back to PICU.  These problems had to get more leveled off.  They put her back on a drip that should bring her blood pressure down and also gave her more diuretics to help get the fluid off.  By Thursday evening, they felt like she could return to the floor and continue meds there.  After much attention and many changes in medication her blood pressure finally leveled off. 

 

Friday morning Kinsley woke asking to eat.  What a great relief!  Unfortunately I couldn't give her anything but clear liquids until lunch- but at lunch it was what ever she wanted.  Friday has been a much better day and she has really talked and stayed awake so much more than any other day we have been here.  She had chemo this evening so we hope she reacts well with it!

 

We hope for the best for tomorrow!