Long time but great news!!

Hi everyone.  I know its been a long time since I last posted on here.  I am so sorry!  We have been super busy with the holidays and other things.  So we have so many things to update you all on.  Thanksgiving and Christmas went great!  We had a blast. We had an "elf on the shelf" visit for the whole month of December.  Kohlton decided to call the elf "Oven".  His reasoning was he didn't want Santa to forget what he wanted for Christmas.  If he named the elf "Oven", Santa would remember to bring him a kitchen with an oven.  Ha ha.  So cute!  Both boys enjoyed finding Oven the elf every morning. Oven the elf, got in tons of mischief.  It was all fun though!  I'm sure Santa will bring him back next year.  The boys are already asking for him.  New Years went great as well.  We had a bunch of anniversaries in January.  January 3rd was his year anniversary of being admitted.  January 6th was one year of being diagnosed with LCH.  January 9th was one year of his first chemo treatment.  All these dates made me so emotional.  I look back and replay everything we have gone through.  All I can think is oh my goodness, I can't believe how far our little man and family have come.  It has been trying in every aspect but we HAVE made it through!  Kohlton's last treatment was January 10th.  We are so very excited!  That weekend we had signs up with his picture on them announcing "no mo chemo" throughout Pace.  A ton of people went and took pictures beside his signs with their thumbs up.  This will make a perfect scrap book of how many people that had prayed for him.  He is going to love it!  He has scans in a week or two to determine the maintenance plan he will be on.  We will find out the results and details on the maintenance plan in February.  I am in total disbelief!  I know God has healed our baby, I knew it was going to happen, but it just seemed like it was so far away.  I am so relieved and so very happy.  We all are!  We will have more details about Kohltons maintenance plan mid February.  I will try to post as soon as we find out.  Thank you all for all your prayers!  We will be having a "No Mo Chemo" Party for Kohlton February 24th at 2pm, at Living Truth Church.  If you would like to join us, feel free!  Please just rsvp to Kara.  You can do that through email.  My email address is KaraDJames@gmail.com
Thank you all again!  We are so very blessed!!  We couldn't have made it through this without each and everyone of you!  Thank you all so very much!  Please continue the prayers.  Kohlton is done with chemo but he will have to stay in remission for five years to be considered "Cancer Free".  Please pray that his LCH NEVER comes out of remission!  Thank you everyone!

I will try to post pictures soon!

Some news. . .

Kohlton had chemo yesterday, well,  we'll let him tell you.....

 



It has been an amazing day!  All I can do is smile!  I will try to get on later to post more info but I couldn't help but share this amazing news!  Please keep the prayers coming!  Kohlton will have to finish up his treatment plan and continue with chemo.  Please pray he stays in remission so that in five years he will be considered "cancer free"!  Please also pray he will continue to do well with his treatments.  Thank you all so much for all of your prayers! 

Need family pics, A professional photographer fundraiser. . .

Before we had Kason we signed up for the baby plan with Jessica Whittle Photography.  She is an amazing lady.  Shes been doing all of Kason's photos still and now she is doing a fundraiser to help us!  Here is the info. . .

Jessica Whittle/Kohlton James fundraiser

I hope I did that right.  Please look and see if you would like to do this.  I'm putting this on here because people always ask about fundraiser for us and because she rocks, shes an amazing photographer and you can NOT beat the price shes doing it for!  Thank you to everyone who is helping out with this!  We love you all and appreciate you all so much!

Enjoying the break. . .

Ok, first of all we have had some good news.  Kason's blood work came back great.  Yay!  Also, Kohlton's scans came back great as well.  The doctor says his "lesions"(yes they are now called lesions, small now) are shrinking or staying the same size.  At first I was kinda bummed that some were staying the same but after talking to the doctor, he says it could be because of scar tissue, he also said no growth is great news.  So, I'm going with that.  So, we have had great news so far this month.

 Counts were good so cookie time is was.  Yay!

We have gotten to visit with some friends and family while on our break.  We absolutely love seeing our friends and family.  It helps us not think about everything that is going on as much.  Our family and friends are great distracters.  ;-)

Uncle Josh with his hands full.  Kohlton, Kason, Karisa, and Kayden with Uncle Joshy.

 The boys and their buddy Carson.  Sweet boys!

 Kohlton and his Mrs. ReeRee.

Kason and his lady.  He he!

Our church did a bake sale for us, all by donation.  So many people baked goods and so many bought them.  We are very thankful for the help.  I was shocked at how much they raised for us.  It will help so much!  Thank you all so much.  We are so thankful to have found such an amazing church to be part of our family!  We love you all and appreciate everyone of you!

This is the sign they made for the bake sale.  It's so cute!  I stole this off of someones facebook page.  Not sure if it was Jackie or Jessica.  Thank you and hope you don't mind I stole it.  Ha Ha.

Yay!  Kohlton is on the potty fully now!  Yay!  We are all so proud of him and are so excited about not having to buy or clean as many diapers.  Not that much longer, only another year or so with bubba and his diapers.  ;-)

Kohlton and his new "unders".  So cute! 

Alrighty, so our break is coming to an end.  We have blood work on Sunday and then chemo on Monday.  The good thing is we get to see Dr. Parmley and chemo will be earlier in the morning this time.  We'll have to see how this new system goes with it being on two different days.  Please pray it goes smoothly,  that he doesn't have any side effects (short term/long term), and that it contiues to work.  Thank you all so much for all the prayers.  We really appreciate everything you all do for us!  Thank you so much! 

I would like to ask a favor, if everyone could also pray for Brian and for Molly.  They both have LCH and need all the prayers they can get.  As far as I know they are responding well to treatment but please keep them in your prayers.  The more the better!  Please keep their families in your prayers as well. 

Thank you everyone for everything you all do for us!  We apprecaite is all!  Please keep the prayers coming!  Thank you, thank you, thank you!







Happy/sad/proud momma moment.....

So today while Kohlton was getting his X-rays I had a happy/sad/proud mommy moment. I was so happy at how good he was being. He just laid there still as he could be. The tech even said she couldn't believe at how well he was doing.  She remembered him fussing a little and me having to hold his hands/arms still.  I was sad because he's had so many scans and other things to deal with. I was proud to see what a strong and courageous boy we have!! I am so honored to be his momma!! I love him and his bubba so much! Ok I admit I did cry a bit during the scans. I didn't let him see but I just got so emotional all of a sudden. It all sat in a bit more this time. Good thing we are over half way done in our year long treatment. Only ten more chemo treatments left. Pray that this is all he'll ever have to do and this will go into remission and my baby will be a heathy little champ! Can't wait for that day! So thankful to have all my family and friends to support us through this. Thank you all of you! You really have no idea how much it helps to have you all here for us and especially Kohlton! Thank you, thank you, and thank you!!  We love you all!

Long time, so sorry!

It has been a while since our last update.  I am so sorry.  Let’s see, what has been going on since the last update?  We had some family come to visit.  We all had a blast visiting.  I’m so glad we could have them all here.  Wish they could have stayed longer. 

 Tommy, Papa Jimmy, Grannie Lou, Kason, and I.

T.T, Kohlton, and pawpaw.

 Kohlton, Kason, and baby Van with their superman shirts that Aunt Paige got them.  Aren't they handsome?

 Mommy and her one year old, Kason.

 Kohlton and BrayBray playing Jake and the neverland pirates.  Ha ha!

PawPaw Mark and Kohlton.  Hurry back, pawpaw!

We have gone on some more bike rides, went bowling, seen two movies, a boat ride, and even celebrated Kason’s first birthday with a small get together and a photo shoot, and Kason has even started walking!  So much fun!  You can see the fun photos at www.Jessicawhittlephotography.com they are amazing!  She is amazing.  She gave us some cards to give to people with Kohltons blog address on them.  So sweet!

 Daddy and Kohlton.  So cute!

Sorry its blurry, but this is one side of the card Jessie made for us. So sweet!

Kohlton has had another chemo appointment.  He did great through the appointment.  He has had another side effect pop up.  He is now itching like crazy.  Sometimes, it looks as though he is trying to pull his skin off.  It’s so sad.  He has even asked me to take the spiders off his skin.  We have gone to the doctors and they say it is not part of the chemo, but it happened about two hours after chemo.  With his chemo the percentage of something like that happening was less than 1% of the people that were tested with it.  Poor guy!  He is also grinding his teeth more and more after each chemo appointment.  I hate that he is having these side effects.  Please pray they go away!  We now have additional medicine for the itching and grinding.  Poor guy has more meds.  Kohlton has scans this week to see about that bump on his head, please pray it is only scar tissue or bone wax and not the LCH.  I will upload the video I recorded of him getting his chemo next post.  I have to figure out how to transfer it over and put it on here.  Then you all can be the judge on if his is hostile or not.  (Info on that in the last post.)

Kason and Kohlton both have blood work on the 2^nd of July.  Kohlton’s blood work is for chemo that day.  Kason’s blood work is for his routine checkup, we are still worried.  At least, we will get an answer on whether Kason could have LCH.  Please pray he does not.  Because LCH is so rare, they aren’t 100% sure on if it is hereditary or genetic, or pretty much anything else relating to that.  Please keep Kohlton and Kason is your prayers.  WE REALLY APPRECIATE ALL THE PRAYERS WE CAN GET.  THANK YOU TO EVERYONE WHO HAS BEEN PRAYING FOR US, BABYSITTING FOR US TO HAVE SOME ALONE TIME, BRINGING MEALS, MONETARY DONATIONS, AND SO MUCH MORE.  THANK YOU, THANK YOU, AND THANK YOU!  PLEASE KEEP THEM COMING! 

YAY KOHLTON!  HE IS ALMOST POTTY TRAINED!  He has been going potty on the potty for about two weeks now; well I started it all about two weeks ago.  He has been doing great!  We have had a few accidents but he is very close to being accident free.  He even goes all night with no wet diapers. Yay!  I’m so proud of him! Please if you’d like, leave him a comment about this and I’ll share it with him!  I’m sure he’d love to have some thumbs up comments.   Thanks again everyone!

 The whole family!  The Fogartys, James', and Watfords.

 Mrs. Tia sent the boys super brother shirts.  Isn't that sweet?!

Mrs. Tia's sister, Ms. Beth, she is amazing.  She is watching the boys now. Both ladies are amazing people and love my babies just as if they were their own.  We love them tons!

 Kohlton and his gorgeous cousin Ella.  We miss her and her family so much already!

 Kason and Kohlton about to bowl.  They are so happy.  Kason rolled the only strike.  Ha ha!

Our birthday boy!  One year old, time sure does fly!  Look at his little teeth!  So handsome!

Thank you all again!  I will update sooner this time, promise!

Fun, sun, and then chemo. . .

We’ve had a great time relaxing between Kohlton’s doctors’ visits.  We got to go to the bike trail in Milton to ride bikes, to Aunt Diann’s swimming pool to go swim, Kohlton and I had a date night with Aunt Laurie and BrayBray, we even got to go to BrayBray birthday party for a little bit, and so much more.  We have had a blast.  Here are some pictures.

Kason at the bike trail.  We have some "styling" boys!

Kohlton cheesing it up!

Can you tell they have fun together? 

And Kohlton is pooped from biking and swimming.

Ms. Tia and Kohlton on the slumber party.

This is blurry, but it momma and son date night.  Kason is too young right now, don't worry I'll be doing it with him too.  It was nice to have one on one time.

Did Kason like the cupcake?  He ate the entire thing! 



Even though we were enjoying our time off it went by too fast.  Monday came too soon.  We went for blood work in the am.  We were able to go to the Pace Sacred which was nice not having to drive all the way to Pensacola.  The day started off dragging, meaning it took the very rude check in lady about an hour to find Kohlton’s standing orders for blood work.  I just kept thinking to myself, Kohlton has to get pricked later on, this is nothing.  So, we went to get his blood drawn.  Well, nurse “J” from last time blew his vein in his arm.  Hopefully it’ll heal quickly.  It’s been three weeks since she drew blood in that arm but so far it’s not healed.  I’m not really sure how long it takes, but I’m praying it heals quickly and that the other one doesn’t get blown, if the other gets blown and it hasn’t healed yet then they will find other areas to draw his blood.  He will NOT be okay with that, and I don’t want him to have to go through anything else.  After the blood work, we met Mrs. Tia for lunch.  She also took Kohlton on a little shopping spree.  She got him some cars and Kason a present too.  It was nice seeing her before she left Tuesday to go back home. 

On to the Doctors visit and chemo, we saw Dr. Schwartz.  He answered most of my questions.  The bump on Kohlton’s head is still there and a little bigger.  Because Kohlton gets scans so often, Dr. Schwartz wants to wait a little bit before doing x-rays/scans again.  I’m really nervous about that, but the bump looks/feels nothing like the others, so I’m praying it’s just bone wax trying to get out or scar tissue.  After seeing Doctor Schwartz we headed to see nurse ”A“ at the infusion center.  We love nurse “A” but because of what happened I won’t put her name on here.  Okay, so everything was going great.  We even had the supervisor of the infusion center come in and talk with me about everything that happened with nurse “J”.  He seemed like he was all for Kohlton being taken care of and seemed to understand it all.  Boy, was that a bunch of bull!  Nurse “A” came in and said we are going to start chemo now.  I nodded okay and started taking Kohlton’s shirt off.  She then opened the door and said “Can we call “E” the child life specialist up here so we can get started?”  I said “what?”  While I’m trying to remain calm she starts saying “well since Kohlton gets so anxious and starts to fight, “E” is going to come and help show him breathing techniques to help him get through this” all while she looked at me with this crazy, this is bologna look.  I lost it!  I didn’t lose it on her; I lost it on the whole idea.  I looked at her and asked “you’ve had Kohlton about five times now, has he ever been hostile with/to you?”  She said “no never”.  Turns out the last nurse because of my complaints, is saying Kohlton is a hostile child.  THIS IS BULL C-R-A-P!  When we first started this whole thing, he fought a little at the beginning, but nothing we couldn’t hold him for.  Now, Kohlton sits in my lap, fusses a little when they clean his port area and stays pretty still during the entire thing.  He even says, “Oh look, its buddy’s juice.  He’s thirsty.”  Anyone can ask any of his other nurses; they all say he’s a great patient.  Anyways, I looked at her and pretty much this sums up what I said,

I am not about to have some strange lady that he has never met before come in here and try to show him breathing techniques.  He is already hesitant at any change in his appointments.  Of course he’s going to freak out with this chick coming in here, all in his face telling him how to breathe.  It is NOT my son that is the problem, it is the nurse!  I am not going to entertain this idea by letting this lady come in here.  My two and a half year old son that is going through chemo is NOT the problem!  NURSE “J” is!  So, hopefully you all get the jest of it.  I didn’t say it this nice but I tried to remain as calm as I could for Kohlton.  Again, I admit to losing it but I will NOT let some thirty years old woman that has never been good with my son blame my son.  I am his advocate and will not let anyone hurt him! 

Nurse “A” went ahead and did the chemo.  She completely agreed with me and thought the whole thing was ridiculous.  She said “Kohlton is great with everything”.  She even mentioned the only time he even fusses is when she cleans his port.  Other than that, Kohlton is doing okay from chemo.  He is a little more tired but he’s not hurting. 

On Tuesday we had dinner at the Schreiber’s house.  This is the family that has Brian, the five year old we met with LCH.  Dinner was great.  The boys got to play and realize there is another child like them.   Carrie and I got to talk about it all and I got to ask for some advice on things while Tommy and Fred got to get to know each other.  It was so nice to talk with another family going through this.  Thank you for having us over! 

Brian and Kohlton hanging out.  They are so sweet!



Kohlton has some surprise visitors coming.  My Dad and his wife are coming back to visit, along with Kohlton’s great grandma Lou, great grandpa Jimmy, and great uncle Mitch.  We are so excited!  I can’t wait for all of the catching up.  Kason turns one in a little over a week, and they both get to know my Dad’s side of the family.  We can’t wait!  I’ll post plenty of pictures after the visit.

Thank you everyone for all your support, for all the prayers, and so much more!  Please keep the prayers coming!  We appreciate them more than you could know!  Thank you, thank you, and thank you!