Friday the 13th………………

Birthday, tornado, ER, oh my!  Yesterday was interesting and filled with moments of panic and many blessings.  It began around four in the morning with Kort crawling in our bed with a runny nose and sneezing.  We gave him a Benadryl and before drifting off to sleep he asked how long it was before he could open birthday presents. 

He opened presents first thing and then the birthday boy was off to McKinley for a special day at school.  He took the most adorable cupcakes, made by Emma J’s, and Remy was in his backpack.  He was the Star Student of the Week and got to take something special for show and tell.  He has been waiting for months to take Remy for show and tell so the fact that it all was happening on his birthday was icing on the cake. 

He was also extremely excited about his birthday party planned for later in the evening.  He was looking forward to decorating the house in Scooby-Doo fashion.  Suzy had picked him up from school and at some point I realized I needed more plates.  I asked Suzy if they’d go pick up the plates before she brought him home.  My mom was out picking up the cake, Kent was at practice and I was home getting things ready.  Next thing I know the sirens are blowing.  I changed the TV  channel to a local station, hear something about a tornado and the cable goes out.  I get a call from Kent but we get disconnected.  I can’t reach Suzy or mom.  I’m panicked. 

All four were in the path of the tornado at different times and different parts of town.  Thankfully they all made it home safely.  Now the question was, what do we do about the party?  It’s time to pick up the Shaggy strips and Fred fries, we’ve rented a moonbounce for entertainment,  roads are closed, mom’s stuck on the west side with the Scooby cake, Kort’s running a low grade temp and another storm is on the way.  I’m panicked.

We move on and have the party as planned.  Our friends and family slowly begin arriving at the house.  My mom finally made it with the cake.  Kort is thrilled and the party begins.  We ate Shaggy strips and Fred fries, the kids  jumped in the moonbounce, Kort opened presents, we ate Scooby cake and ice cream and watched the Thunder game.  About 8:30, Kent suggested I check Kort’s temp.  He and the kids were playing in his room having a wonderful time.  101.5!  I’m panicked.

Kent and I loaded up and headed to Children’s.  Our remaining guests cleaned up the party and locked the doors as they left.  What a blessing to have wonderful friends and family.  It reminded me of the night Kort was diagnosed.  They came together and managed the situation with hesitation so we could focus on what needed to be done for Kort. 

Kort fell asleep in the truck.  He slept in the waiting room.  He slept in the isolation room while being examined by the doctor.  He felt bad and was exhausted.  It was time to access his port and he practically slept through that.  We had a pleasant surprise from Ms. Cottingham.  She came to visit and although Kort was tired he was glad to see her.  Right as she was leaving they told us his counts were good, it was probably viral and we could go home. 

Today has been fairly low key.  Michael Ann and Madison stopped by with a birthday gift.  We had a small get together at mom’s for a family birthday party this afternoon and then he took a four hour nap.  His temp has remained low grade, his nose is still runny and he has an occasional cough.  We are praying we make it through the night without going back to Children’s.  More rest tomorrow and then we’ll head to the clinic on Monday morning to see the doctor and get chemo.  Hopefully he’s ready to go to bed.  Mommy and Daddy are tired.  Night, night!

Croup, fever and three trips to the ER………..

It’s been a busy week and thankfully things are finally slowing down around here.  Kort’s coughing has gotten a lot better and less frequent.  He hasn’t had fever since Friday night and seems to have more energy.  His food and fluid intake isn’t back to normal but I think he’s eaten a little more than yesterday. 

Visits from his Daby, Aunt Dana, Ms. Cottingham, Nana, Kiki and cousin Taylor have brightened his spirits.  Daby’s banana bread and angel cake always brings a smile to his face while puzzles with Nana, Kiki and Taylor keep him entertained.  He was finally able to give Ms. Cottingham her Valentine and enjoyed looking at the cards his classmates made him. 

Tomorrow we head to the clinic for his monthly chemo appointment.  He’ll begin his steroid pulse, have blood work done, get Vincrinstine in his port and see the doctor. 

We are very thankful for all the prayers, phone calls, text messages and visits.  It’s comforting to know after all this time prayers continue for Kort. 

Watching a movie on my phone during Friday’s six hour ER visit.

Kort wore a mask while we were in the waiting room.

Measuring Spoon Mission…………

Each week Kort takes Bactrim for three days, once in the morning and once in the evening each day.  A few weeks ago I was looking for the measuring spoon and found it hanging on the handle of a drawer in the kitchen.  Kort heard me laughing and was extremely proud of himself for giving me a surprise.  Since then it’s been his mission to leave it in places I’d least expect.  Here are a few of those places.

 

 

 

 

My mom took Kort to the clinic this week for blood work.  His counts were a little high and have been so they increased his daily chemo we give at home.  He had a good week at school and really enjoy gymnastics on Thursday. 

The last two days he’s been fighting off a cold or something.  He has a cough.  Last night he ran a low-grade temp but thankfully it didn’t reach the magic number of 101.  

Today his aunt Kiki took him to see Beauty and the Beast 3D.  They had a lot of fun and I was able to get some school work done.  I hope everyone enjoys the long weekend.  It’s time to read Kort some books so I’ll say night night.

 

 

 

 

 

365 days or 52 weeks and counting…………….

Thursday was another milestone in Kort’s journey with leukemia.  Kort’s been fighting ALL for the last 860 days.  As of Thursday, he had only 365 days to go.  We had a celebration with friends and family and enjoyed the most awesome cake created by Emma J’s Bakery in Norman.

Kort had been anxiously awaiting the party.  He chose the theme, Phineas and Ferb surfing tidal waves, shopped for plates and napkins and made original decorations for the house.

Here’s one of his decorations.  The coloring represents Agent P, a bluish colored platypus who wears a brown hat, has a yellow bill and an orange tail.  He had Nana write for him and told her exactly what to say.  We hung 4 different signs along the mantel.  (Adorable picture above his sign courtesy of Sara’s Photo Creations!)

I think this was the first countdown party he somewhat understood.  I’ve always said these parties are really for the adults since he hasn’t had much concept of time.  Although Thursday he seemed a little more aware that the end of chemo is getting closer.

So, my goal over the next 52 weeks is to take lots of pictures and write a blog entry at least once a week.  Wish me luck and please continue to pray for Kort.  Although a year feels much closer to the end of treatment than we felt on September 1, 2009, we’re still fighting.  Pray he stays healthy, the leukemia remains in remission and his body can fight the side effects of the chemo.  As always, thank you for loving us and supporting us through this journey.

Light the Night is just around the corner……………..

Light the Night is October 23rd.  We are raising money for the Leukemia and Lymphoma Society.  You can make a donation, order a t-shirt and/or bracelets.  Pics are below.  You can also join our team, Kickin’ It Kort Style, and walk with us to support Kort in his journey with Acute Lymphocytic Leukemia.  Last year we raised a little over $7,000 and had over 40 team members.  It was a lot of fun and we’d love to have a bigger turn out this year.

You can join our team by going to http://pages.lightthenight.org/ok/OKCityL11/KickinItKortStyle and clicking JOIN at the bottom of the page.  You can also make a donation to any of the team members by clicking on their name.

Below are pics of this year’s shirt and prices.  Bracelets are $2.00 and are black with green wording Kickin’ It Kort Style. 

Crew Necks Short Sleeved Ts      15.00 ( up to 6x)  Children Sizes   12.00
Long Sleeved Ts                                17.00  (up to 3x)
American Apparel V Necks         20.00  (adult sizes up to XXL only)
Crew Neck Sweat Shirts                 25.00 (Up to 3x)
Hoodies                                               30.00 (up to 3x)
 
(Add $1.00 for each X if larger than XL)

 

 

 

 

 

 

 

 

We can make a difference in the fight against blood cancers.  Research is the key to finding a cure so every dollar counts.  Help us help the Leukemia and Lymphoma Society find a cure and thank you again for supporting Kort in this journey.

It’s been two years………..

This was Kort two years ago.

We were just getting home from a five-day hospital stay.  His “babies” were his most prized possessions and they had missed their bed.  Kort missed his bed and the comforts of home.

Pre-B Acute Lymphocytic Leukemia.  Three and a half years of treatment.  Chemo, spinal taps, nausea and nuetropenia.  Lives turned upside down.

This is Kort today.

His cars are his “babies”.  His collection represents our journey in the childhood cancer world.  Gifts from friends, loved ones and strangers.  Bribes from Momma to get EMLA cream on his back or meds in his tummy.  Celebrations for a milestone completed.

Pre-K, gymnastics and art classes.  Friends, laughing, swimming and wishing.

Two years of prayers from all over the world.  We are blessed beyond measure.  Four hundred and eighty nine days to go.

So good to be home…..

We are thrilled to be home and sleeping in our own beds once again.  Add to that a home cooked meal and the Nicholson’s are on cloud nine.  The minute Kort was unhooked from Stix he was bouncing off the walls with pure joy.  Praise the Lord for answered prayers!

We are expecting home health care supplies to be delivered today and we’re very happy to be working with Jennifer again.  Kort will receive seven days of iv antibiotics.  Jennifer will change the dressing around his port Thursday and then she can remove the needle Sunday.  We return to the clinic Monday for a routine finger prick. 

The last time Kort was really sick was when he had pneumonia.  His counts dropped about a week later and he was neutropenic (unable to fight infection) for two weeks.  Please pray his body continues to fight this bacteria, the meds completely kill the bacteria and that he doesn’t become neutropenic in the coming weeks.  Thank you again for your love and support.

Not just a trip to the ER this time around…….

Wednesday, Kort woke with a low grade temp that spiked to 102 around 6:00 that evening.  We made our way to the ER and went through the usual routine.  His AGC was over 19,000 which was shocking.  If you’ll remember they like his AGC to be between 750 and 1500 so you can imagine the look on my face when the doctor said 19,000.  At the time he said not to worry.  Kort was in the middle of his steroid pulse and that quite possibly could be the reason his AGC was so high.  This is also what we’ve attributed his monthly fevers to since nothing has ever grown in the blood cultures.  On the other hand, he said there could be an infection brewing, which scared the daylights out of me.  Since he wasn’t neutropenic (below 500) we were sent home. 

That night was pretty rough.  He was up about every two hours crying and feeling terrible.  At 3:30 his temp was 103.  He got in bed with me and Kent slept on the couch.  By Thursday morning, Kent must have been feeling as uneasy about the situation as I was because from the living room I could hear him on the phone with a doctor from the clinic.  She gave us the same instructions as the ER.  Kent and Kort settled in for a day at home while I went to work.

Around 9:45, Kent called me saying the ER doctor had called, something had grown in the blood cultures over night.  He was directed to get Kort to Children’s.  They loaded up and headed that way while I finished the EOI testing at school.  Once the test was over, I ran home to pack.  Kent sent me a message while I was home to expect at least a three day stay. 

After being admitted, Kort’s port was accessed and another set of blood cultures were taken.  They also started him on the IV antibiotic  Vancomycin.  It would run for two hours every six to eight hours.  By the time I got there, they were settled in and Kort was glad to see some of his favorite toys.  He was also extremely quiet and had very little energy.  He wouldn’t sit on the bed.  He had been in Kent’s lap for several hours so we switched places.  Kort sat in my lap forever.  I was worried we’d end up sleeping in that chair. 

He complained his tubie hurt and didn’t want anyone to touch it, move his arm or pick him up.  This continued into the evening and I asked the nurse to please take a look.  The plastic part attached to the needle was sitting at an angle so we decided to take it out.  Kort had to have his port accessed on Monday because he had an LP, Wednesday night at the ER and then that morning when he was admitted.  Each time it’s accessed, big square adhesive bandages are used and they are awful to get off his skin.  Getting them off Thursday night was brutal.  I felt so sorry for Kort.  He cried and begged, “Please don’t hurt me!”  His nurse was very patient and did an excellent job.  Nana and Kiki where there to lend him some special support.  We waited about 45 minutes before accessing it again.  We put on pajamas, took his evening meds and relaxed in the chair.  He got to go to the toy closet after the second tubie was in place which was around 10:45.  He chose a movie and I convinced him to lie in bed while watching.  Before I could brush my teeth, he was asleep.   

Friday morning during rounds I was told his blood culture from Thursday came back with the same bacteria as the Wednesday evening cultures, Streptococcus Pneumoniae.  They wanted to continue treating it with the Vancomycin and do another culture because what they took Thursday was before IV meds began.  Let the waiting game continue. 

He had several visitors and was happy to see everyone.  Aunt Gail brought us some lunch.  Grandmother Suzy visited and brought a new movie.  Carol and Duffy from Little Hands brought goodies from the Easter party he’d missed at school and lots of other fun things to play with and put together.  Kent and Kiki showed up as well with more surprises and a few of his Maters from home.  Around 5:00 he had a major “roid” rage that lasted a long time.  He crashed for about 45 minutes and then it started all over again.  At one point his was sitting under the hospital table, in the corner, with his back to Kent and I sobbing.  I talked him out from under the table and he sat with me for a few minutes before I left for the evening.  He seemed better so I guess he needed to just let it out.  I told Kent later that evening I’d probably already have had that fit ten times by now if I’d been through the week he’s had. 

He slept through the night and woke feeling much better.  The repeat blood cultures came back clear and we couldn’t be happier.  They are trying a different IV antibiotic, Rocephin, now and you guessed it, took more cultures.  We are hopeful they will stay clear and could possibly go home tomorrow.  Our day has been uneventful and to avoid another rage, he’s napping at the moment. 

There aren’t enough words to describe how grateful I am to all of you who have prayed for Kort.    Your love and support for us is appreciated “to infinity and beyond!”  God is so good!

Load up Nana, we’re going to the ER….

Kort woke from his nap with a low grade temp then it spiked quickly to 102.  I had just gotten home from getting my hair “did”.  Mom was baby sitting while I was out since Kent was at a swim meet.  I had only been home a few minutes before he got up.  Then it was on like donkey kong!

Have I mentioned how much Kort HATES masks?  Well if not let me tell you, HE HATE MASKS!  Of course the nurses are going by the books and doing everything they can to protect Kort from germs while accessing his port but the drama it causes is crazy.  He cried so much more over the three nurses putting  their masks on than accessing his port and taking blood from his arm combined. 

His AGC is over 6500.  Wow, whatever he’s got his body sure is fighting it.  Thank you Jesus.  I didn’t want to spend the night in the hospital tonight.  The doc thinks it’s probably a virus and sent us home.  Just praying now nothing grows in the blood cultures over the next 48 hours. 

So here we are, in my bedroom, watching movies.  So thankful!  Night, night!

Thank you Poopyhead……..

We spent the morning at the clinic.  Kort was scheduled for a spinal tap with chemo and to get chemo through his port.  It started off great.  We got there early, his vitals were taken and his finger pricked.  Then it was a matter of waiting.  The more we waited the more anxious Kort got.  Anxiety in a three year old is pretty ugly.  He began climbing on the furniture.  I explained to him that wasn’t ok, to get down and walk around to the other side.  He argued, loudly, and continued to climb.  I said something about finding a time out spot and he told me in a nasty tone he’d walk around next time.  Kent picked him up after the second time he yelled at me and Kort proceeded to hit him in the face with the car he had in his hand.  Time out was definitely in order. 

When they returned Kort apologized and we talked about how scared he must be knowing what was going to happen next.  From then on I started breaking down each step of the way and tried to give him some choices in how things could happen.  He managed to pull it together and went into the procedure room without fussing.  He went to the toy closet and that seemed to distract him some. 

We met with Dr. Black.  She was new to us.  Kort talked to her while she examined him which surprised me a little.  He tends to be more reserved with someone he doesn’t know.  She went through the routine and Kort cooperated.  His AGC was 1496!  We can get out of the house now!  I asked her some questions about the study Kort’s on and was pleased to know there won’t be any changes to the protocol. She advised us to resume his daily chemo and finished up her exam.  As she was walking out the door Kort said to her “Thank you Poopyhead!”  Kent and I gasped as she turned around with a look of surprise.  She wasn’t sure what to think but chalked it up to her conversation with Kort earlier about whether he has a difficult time with peeing and pooping and walked out the door.  Little did she know “Poopyhead” is a term of endearment for Kort.  If he calls you Poopyhead you’ve made the cut. 

Meagan came in and we talked him through the next part which was accessing his port.  He chose to sit in Kent’s lap and wanted me to take off his EMLA cream.  He was a champ up until time to hook him up to the IV pole.  We started telling Kort he should make friends with the pole and asked him if it had a name.  He named it Stix with Kent’s help and it made all the difference.  Why haven’t I thought of this before?  He would have me ask Stix questions.  Meagan said Stix wanted to know what Kort wanted to do after his appointment.  Kort said he wanted to eat tortillas at Ted’s.  This went on until time for his procedure. 

Kort hates having the leads stuck on his chest, the blood pressure cuff on his arm or leg and the band-aid that makes his finger glow red.  It was time to do all of those things and he had a meltdown.  He was sitting or should I say fighting  in Kent’s lap while they hooked him up.  Then the Versed hit him and he really flipped out.  I’m glad the Ketamine works fast because I can’t hardly stand for him to be so upset.  I stepped out and the spinal tap was over in a matter of minutes.  He came out of the anesthesia quickly and had us cracking up the entire time.  We were on the road a little after ten.  We stopped at Ted’s for lunch then came home and crashed. 

He’s had his chemo pill, eaten more tortillas and taken Tylenol for some leg pain.  He seems pretty happy and is playing with his cars.  I’ve mentioned going to school tomorrow and he’s not very enthused.  Pray he gets back into the swing of things with little or no stress.  His teachers and friends have really been missing him.  One of his best friends, Hudson, was so worried he asked his mom to bring him to see Kort on Saturday.  It was so sweet and I really appreciate them taking the time to come visit.  Thank you for your prayers, phones calls and texts.  Enjoy the week!