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!

YAY! No Cholesteatoma!!

Hey everyone!  We have a bunch of people asking how they can help. Well here is one way you can help and get some amazing products for yourself.  If you love 31 products, my friend Carissa Hanger is doing a fundraiser for us; she is giving our family 25% of your purchase!! Please check out her page at http://www.mythirtyone.com/CarissaHanger/ and order under the party James Family. There are some really nice products! Please tell your family and friends!

Ok so here is the latest update.  Kason ended up with a virus.  Thankfully Kohlton has not gotten it.  But Kohlton has had a new side effect from his chemo.  He couldn’t really walk for about 30 minutes on one leg on Tuesday.  He hasn’t had that since but we will be talking with our doctor about it.  It’s still very scary even when you know what to watch for and it does happen.  Wednesday and Thursday went great.  On Friday we had to head to get blood work for Kohlton, to make sure his counts were good for surgery on Monday.  Thankfully the old pediatric infusion center got us in for his blood work, this way he didn’t have to meet another person.  Well, getting the blood didn’t go as smoothly as it usually does.  I’m assuming that what nurse “J” did to him on Monday scared him on Friday. He screamed like there was no tomorrow, and it was Mrs. Chris doing it.  I knew this was going to happen.  We are going to have to figure out a way to get him comfortable again.  Thanks nurse “J”.  (that was said sarcastically)  The good thing is his counts are great, well great for him! YAY!  So, Monday morning we headed for surgery.  The lady that checked us in was amazing.  She even gave curious George a medical bracelet too.  So sweet!

So sweet! 

Dr. Pennington said everything went well.  He did not see any scaring from any other surgery.  He did not see any sign of a Cholesteatoma.  Or any lesions or tumors!  YAY YAY YAY!  So excited about that!  Kohlton did great.  He even woke up ready to play, like nothing had even happened to him.  They did remove wax build up and we will have to use a wax softener to get it to come out more.  They said they removed what would be a large amount for an adult.  He is going to hear much better!  He’s already told me “maw maw, your really loud” twice today.  It’s pretty funny.  So, I’m trying to be quieter. 

So peaceful!



Please keep praying for Kohlton and all of us!  Thank you!

Some relief!

For all of you non-believers out there, this is for you!  Last night was one of the first nights I prayed for some financial relief with bills and so on, I went more in detail with God while praying but I’ll just let that be for us.  Any who, today at work God took care of us.  While I was busy working a young man by the name of Jonathon came in and asked for me.  One of the ladies I work with asked for a last name but he wouldn’t give it.  I was really busy so it took me about fifteen minutes to be able to talk to him.  Once I had a free moment I went and said “Hey Jonathon what can I do for you?”  He politely answered “I was told to give this to you.”  He handed me a white envelope with Kara James written on it.  I asked him what it was and who it was from.  He simply answered with “I was just told to give it to you” and walked out quickly so I couldn’t ask any more questions.  I opened the envelope.  It had a letter and cash in it.  The letter was perfectly written.  This is what it said.

Dear Kara,

I just wanted to let you know how much God loves you and so do we.  God loves you and he knew you before you were born and he will never leave you or forsake you.  You and your family are in our prayers and will stay, keep your eyes on Jesus and let your heart find rest and peace!

This is your hug and I love you from Jesus today!

I am so thankful to have a loving God!  Thank you God for answering this prayer of ours!    I know it’s not the last one you will answer; I know our baby will be healed!  Thank you God for sending this our way!  Thank you to Jonathon and whoever sent this to us.  We appreciate this more than you could know!  Thank you, thank you, and thank you!

Fun times and chemo again.....

Everything has been going great the last two weeks.  We had Dad and Priscilla visit on and off for about two weeks.  It was so nice to have company.  I get pretty lonely.  Tommy got us some bikes and the boys’ seats to go on them and even a child trailer to put them in, so I can take both the boys on a bike ride all by myself.  The weather is so nice.  We all enjoy the bike rides. 

The boys on our first bike ride with the tote!  So cute!

Sunday was BayBay’s birthday.  Laurie and Jarrell brought the blow up slide that they have.  They put it up here so that Kohlton could spend some time with BayBay.  Kohlton may not be able to go to his birthday party so it was very nice of them to do that.  BayBay and Kohlton had a blast! 



Happy birthday BayBay!

Trying to get them to say cheese!

This is priceless!  My baby is so happy!

Could this be love??  Baby Kason and baby Emma.

Yesterday was Kohlton’s chemo day.  We had to head to Pensacola for blood work in the am.  The Pace office still has no tech to do the blood work so, on to Pensacola we went.  I called to see where we needed to go in the Pensacola Sacred heart area, the last infusion center always had us come to them so Kohlton wouldn’t have to meet another person and be upset.  After I explained this to the new infusion center they told me ok come on up.  Once I got there it was a completely different story.  The nurse, we’ll say her name is “J” gave me this long speech about how she was doing me a favor by doing my sons blood work there, but for future blood work she would not do it, I would have to take him to the diagnostic center inside of Sacred.  This fired me up, I still remained calm and very nice to her, just ask Mrs. Tia.  She came with us and she even said “J” was very rude!  (By the way this “J” is the same nurse we had problems with last antibiotics and IV of fluids appointment and I asked for another nurse)  She also told me she was going to go ahead and access him so that way she wouldn’t have to later.  I told her, that Dr. Parmley told us never to do that, it’s too much to risk infection to the port.  She looked at me and said “well, I’ll check with the doctor but I’ve always done it that way, so I don’t know why he wouldn’t be okay with that”.  I simply said “Okay”, knowing if she came back and did that I would refuse.  She came back by saying “Dr. Schwartz said no because if his counts were not good then we’d have him accessed and I’d have to come back to take it out”.  I simply said “Okay”.  Once she started the needle work to get his blood, she did okay until the end.  At the end of it, you know when they pull the needle out and then put the cotton ball on it with pressure; well she decided she was going to leave the needle in while applying pressure.  Well, what do you think happened when she did that?  He started screaming hysterically and surprise he now has the biggest bruise he has ever had for blood work.  Ridiculous!  Ok now on to the doctors’ appointment, it went great.  Kohlton has a bump that showed up on his head about a week ago.  Dr. Schwartz looked at it, said it looked like a bite but he is not happy with it.  Told us he was going to keep a close eye on it.  If it’s just a bite it’ll go away, if it’s something else it’ll shrink with chemo but not really go away.  So, until next appointment we’re going to be pretty much on edge.  Kohlton really likes Dr. Schwartz now, he didn’t even cry while he checked him out.  Kohlton did so good.  (Proud momma!)  So all of us had time to waste until Kohlton’s blood work came back to do chemo.  WE grabbed some lunch and then headed back to Sacred.  I figured we could go see his favorite ladies, the FUN and LOVING old pediatric infusion center.  Mrs. Mari walked out and he just ran into her arms, same with Mrs. Chris.  They just love him and he loves them too.  We got to visit with them for about 5 or 10 minutes.  It was great.  He was so happy to see them.  After that we headed back to the other infusion center.  (By the way, I do not call them good and bad infusion centers anywhere near Kohltons ears.  I want him to make his own opinion and hopefully not be scared of them.)  Okay so we get back up there and right of the bat “J” says with a smirk on her face “okay we need the bed to swaddle him?”  I guess she saw the answer on my face, because before I could say anything she said “oh wait we use the recliner, and you hold him right?”  I was about to blow up at her, but thankfully my eyes showed her what I was about to say.  We went back to the room and waited about 45 minutes to an hour for the chemo to come up and her to get started.  This whole time she kept saying it’ll be here in about 5 minutes, and calling it vincristine and not vinblastine.  So, I had to keep looking at everything and correcting her.  I had to keep making sure it was the right paperwork and the right drug.  This entire time I kept saying “he takes vinblastine, not vincristine.  Which drug are you talking about?”  She would answer with “oh its vinblastine, I just keep overlooking it.” She would say that while laughing.  She ended up doing the chemo and we were able to leave.  I have already called the supervisor and left a message with her.  I cannot let my baby go through that again!  It’s almost like she took her time and was beyond rude to us.  She kept making me look through all the paperwork again.  Tell her all his surgeries, scans, and all that again.  It’s in the file is all I could think.             

We got home and everything is great so far.  No new side effects.  Kason is sick and has an appointment today at 130.  I hope whatever he has is over soon and that it is not contagious to Kohlton.  His bottom is so tore up.  He is still a happy baby as long as you change his diaper about every 30 minutes.  Poor guy!  I will let you all know how he is doing once we get back home. 

Kohlton has blood work on Friday to make sure his counts are good.  If they are good he will have his surgery on Monday for his ears.  I won’t know exactly what surgery it will be till Monday when they look inside them.  It might be just a cleaning of the inner ear or it might be the removal of a Cholesteatoma.  The ear cleaning takes about 20 minutes and the removal of the Cholesteatoma takes about 4 hours.  So we are on edge for that as well. 

Kohlton fell asleep while praying!  So sweet!

Please keep praying for Kohlton and all of us!  We appreciate everything all of you have been doing to help us!  Thank you, thank you, and thank you!  Please keep praying!