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!

Hope this is a Nemours clinic free week!

Kohlton did great after his chemo on Monday the 9th.  That week my dad and his girlfriend came to visit.  We had so much fun!  We were hoping we wouldn't have to go back to the clinic till the 30th.  Well, Kohlton decided he wanted to scare us again.  (I'm just joking I'm not blaming him for anything.)  On Monday the 16th, Kohlton got a fever.  The fever was betweeen 101.7 and 103.1.  (I took it three different ways to be 100% sure)  On to Nemours we went.  He had to get blood work to check his counts and some IV antibiotics.  His blood work came back great! His counts were around 3000.  Great!  So, Dr. Schwartz told us to head home and if he got another fever to bring him back the next day for more antibiotics.  So, that night he did get a fever.  It was 102.2.  So the next day I called to get in.  Once we got there we were told more antibiotics and some fluids through the IV.  Kohlton wasn't drinking or eating now.  So, I was all for the fluids.  After seeing Dr. Schwartz we headed to the new infusion center.  (Which I hate!)  There's hardly any toys.  The TVs dont have remotes and for a 5'2" lady, I can't really turn it on or change the channel.  We were there from 1 to 6pm and it was very hard to entertain a 2 1/2 year old in a tiny room with no toys and no TV.  We did get the nice nurse though.  We are very happy about that.  The other nurse I am going to call and ask for her never to be on our case again.  When we first arrived she told me she was waiting for the room with a bed so she could wrap him up and then do everything.  I told her no your not, I hold him and he's fine.  She began to argue with me telling me Kohlton fights majorly so she is going to wrap him up.  I again told her no she was not going to do that and ruin everything Kohlton has gotten used to so far.  She then told me the only room she had available was the one with just a recliner, I said great thats what we sit in.  She was dumb founded.  Once she took us to the room, she then told me I needed to fill all the paperwork out since they moved to another floor.  I asked her if she still had my information she said yes and handed it to me.  I looked at her and said its the same and handed it back.  It was literally the paperwork I filled out at the beginning of all of this, my handwriting and everything.  So, why would I have to fill it out again, she has it right in her hand?  Ridiculous!  Well, we ended up getting Ashley instead after all of that.  Thank goodness!  If the other nurse would have came back to the room, I would have refused to let her touch Kohlton.  She knew nothing about him and insisted she knew everything.  To me that is a horrible nurse!  Kohlton had a great week after all of that.  He hasn't had anymore fevers or had to go back to the clinic.  Yay!  Hopefully this will be a fun week of no visits to the clinic.  Thank you everyone for everything you have done for us or are still doing for us.  Please keep praying Kohlton and all of us!

Yay! We got to go home!

Friday after work, I got to go back to the hospital to be with Kohlton.  Mrs. Tia came to watch movies and hang out with us.  Even in the hospital we had so much fun! 

Kohlton when we were waiting to see if we were going to be admitted.

Right after we got admitted he passed out.  So sweet!

Another night, he looks like he's trying to suck Georges thumb.  He he!

He's being silly!

Kohlton kept asking for Bubba and when Bubba comes, he falls asleep right before he got there.  Kason even tried waking Kohlton up!  It didn't work. 

This is so cute I had to put it in here.  Aunt Diann made a homemade highchair for Kason.  She kept him every night we were in the hospital with Kohlton. 

Saturday morning we woke up and were told his blood counts were 540 and we might be able to go home.  They were waiting on results from one more test.  At about four we got the results and were able to leave. 

Kohlton got his very own wagon ride, right out of the hospital! 

YAY!  Home for Easter!  Once we got home Kohlton wanted to go straight out to his play set.  We played out there for what seemed like hours but it was really about only an hour.  He is so happy to be at home! 

He loves his play set!

When we woke up on Easter, Kohlton and Kason went straight for their baskets.  Aunt Laurie and Uncle Jarrell went and got everything for us, in case we weren’t able to leave the hospital in time.  The baskets were ready for the boys thanks to you guys!  We appreciate all you do for us!

Their baskets.

Kason is excited but doesn't really know what to do.  So cute!

Oh, they found the ring pops.  Yummy!

They are crawling champs! 

 Aunt Diann had a lunch at her house.  It was all outside so we were able to go as long as nobody was sick.  Aunt Diann had an Easter egg hunt for him.  He loved it!  We all had a blast.  Once we got home the boys napped and then the Flanders crew came over.  We got to do our very own egg hunt for Kohlton and Brayden.  Kason and Emma are a little small but next year it will be four little ones running around.  It’s hard to believe that.  Kohlton and Brayden had blast.  They ran around for a while finding eggs.  Laurie and I hid the eggs out in the open so it was easy for the boys to find them.   Over all we had a great day.  We are so thankful to be home. 

Kohlton and Brayden trying to stay still.  So cute!

And he's off!  Look at how tiny he looks running out there. 

He's trying to carry all of them himself.

Such a good boy sharing his easter eggs with his bubba. 

On Monday I called the doctor to see if we needed to do blood work and anything else.  They wanted us to do the usual Monday.  So, Mrs. Tia came over and we headed to Pensacola to do the blood work. (The sacred in Pace no longer has a tech to do the blood work, so we’ve ended up waiting for it to be delivered to Pensacola and the blood work done there.  So we figured we would just go there instead.)  Kohlton got to see Mrs. Chris and Mrs. Mari this morning.  They did his blood work.  He absolutely loves them.  He barely even fought them when they did his blood work.  I might have to make that drive every time then.  Anything to make his chemo days go a little easier for him, I so will do it.  We headed home for a bit and then back to Sacred for the appointment with Doctor Parmley.  Kohltons counts were high enough to do his chemo, which means now we get to go every three weeks.  Yay!  He did pretty well considering in the hospital he wouldn’t let anyone touch his port.  I am so proud of him!  He is such a tough little cookie! 

Kohlton and Mrs. Chris.  He loves her so much!

Kohlton and Mrs. Mari.  He loves her so much too! 

On a sad note, the infusion center is being moved yet again!  Kohlton will no longer have his favorite nurses doing his chemo and now blood work.  We will be in the Nemours center but with new nurses and new everything.  I don’t see his next chemo going the easily.  I don’t understand the switching of places.  I thought this was supposed to be for the children and what my child needs is a familiar face and space.  The new area I have been told will not have many toys and will have chairs with curtains around them.   Basically like the adult infusion center but for my 2 and a half year old.  I’m not a happy camper.  They called me to get my opinion about all of this and didn’t even take it.  I know it came down to who had most votes on each side but we are very disappointed.  Poor Kohlton is going to be a mess next appointment.  We will still go down stairs to visit Mrs. Chris and Mrs. Mari. 

Thank you all for everything you all have done!  We appreciate all of it!  Please keep the prayers coming!

Thank you to whoever sent Master Kohlton James the Easter card.  When we got home Saturday, I checked the mail and there was a card addressed to Master Kohlton James.  Once we opened it the card said To Master Kohlton, Hope you and your family are blessed this Easter!  No signature of who sent it.  Inside it was $170.00 cash.  You will never know how much this has helped.  We are so thankful for your kindness and generosity!  Thank you from the bottom of our hearts!

A bump in the road.....

Wednesday started off a little rough. Kohlton woke up around seven am, he never does that. He felt warm but I kinda felt like I was just being paranoid since the doctors told me to watch out for fever. Well I took his temperature in the ear, it was over 101. Then I took his temp on his forehead an then under his arm, three different ways. All of them were fevers, each time. So, since it's not supposed to go over 100.4 I started to panic. I gave him Tylenol right away to make sure it didn't go any higher. I called the doctors office, no answer so I left a message. I basically told them I was headed to the ER with Kohlton once Mrs Tia got there to take Kason. They ended up calling me o let me know to head to their clinic instead. Once we got to Nemours they sent us to the infusion enter to get blood work and antibiotics. Once they received the counts they would let me know if he would be admitted. Well on monday his counts were 452, well they were 380. So Kohlton got admitted. They did a blood culture on Wednesday when they collected blood for the blood work. Today we found out the cultures show a bacteria growing. Tomorrow we will find out if it was just a contamination, an infection that came thru the port, or an infection in the port itself. They started him on a ten day antibiotic which has to be given through an IV. So, we're thinking we're gonna be here for a bit. We appreciate all the prayers and everything else you all have been doing for us. Please keep praying for our little man. He's a tough cookie! When we find out more tomorrow I will let you all know. Tommy will be here with Kohlton tomorrow. I have to work which so bothers me to leave him but that's what comes with my field I chose. Thank you all again!

More and more thankful everyday!!!

Ok, I’m just going to get right in to it.  Friday Kohlton had his MRI and his full body x-ray done.  We left the house around 1015 am.  We figured we could get there early and try to knock the x-rays out of the way.  On the way there, the MRI crew called to say they were running about an hour behind.  Great, I thought, just great another hour with Kohlton starving and thirsty and me not being able to give him anything.  We ended up having plenty of time to do the x-rays.  Kohlton was a champ!  We headed for the MRI waiting area where we got to meet a very special little boy and his parents.  (I found out on Thursday that my sister is going to be moving.  So, the night before while praying, I had prayed to meet someone to talk to about all of this, someone who would be going through a similar situation.  I appreciate all my friends, but I feel when I talk to them I only talk about Kohlton and can’t or don’t listen to what is bothering them.  So, I was kind of praying to meet someone who we could help each other get through this.)  Well, in the waiting room was Brian, a 5 and ½ year old little boy who has LCH.  He was there with his parents Fred and Carrie.  You can look at my blogs, I follow Brian’s blog.  While all of us waited for our boys to be taken back we got to chat a bit about everything. Brian and Kohlton have a few similar symptoms from the LCH.  We talked about before we knew about the LCH, and since.  It was so nice meeting this family.  Our circumstances are different.  Kohlton was having an MRI to see how much the tumors have shrunk.  Brian’s has come back, so his scans were to find out how much, I think.  I pray for this family every night now!  Please join me in praying for him.  He is such a sweet boy!  Ok, before I start crying.  Kohlton did great with the MRI.  He even patted his George to sleep.  He has a curious George stuffed animal that goes everywhere with him.  When he started crying while being sedated the anesthesiologist put the mask on George and told Kohlton to take care of George.  So, Kohlton patted his back and told him “Don’t cry, George.  It’s okay!”  Isn’t that just sweet!?  Such a sweetie!  So, Monday we will find out the results of the scans.  It’ll be a long weekend.  I love my sweet little man!

Our sweet boy in the recovery room.

His sweet nurse, Tiffany, put George like this to pat Kohlton's back till he woke up.  Isn't that just so darn sweet?!

It’s finally Monday!  The weekend seemed so long but thankfully my sister joined us on Saturday.  It kept my mind off of the scans for a bit.  Sunday we took Kohlton and Kason to see The Lorax.  It was so cute.  Kohlton asked to watch it again before we left the movie theatre.  (It was an early showing and there were maybe 10 other people there.)  So, Monday morning we woke up and headed for blood work.  We get there and of course they don’t have the authorization code so we waited a while and finally could go back and get his blood work done.  After that we headed home for some play time.  Mrs. Tia spent the day with us.  Aunt Diann watched Kason so that Mrs. Tia could join us at chemo.  Mrs. Tia was a little curious about it all so we invited her to come with.  This is when Mrs. Tia got upgraded to Aunt Tia.  Kohlton started calling her Aunt Tia as soon as we got to Dr. Parmley’s office.  So sweet!  Tommy joined us a little in to the appointment.  Here's what we found out, the scans show “three previously seen tumors are all smaller”.  Good sign.  We got all kind of news, I think.  It was all over the place.  Ok, basically Dr. Parmley wants to talk to the pediatric radiologist to confirm some things about the scans, things that weren’t clear to him.  The tumors are all smaller, but the one up front isn’t as small.  He wants to make sure it is shrinking all over, not in just one spot.  They’re two reasons for wanting to know.  If it is shrinking in one spot then, he needs to know why?  Is it because part of it isn’t responding to treatment or is it scar tissue.  We pray its shrinking all over.  But the pediatric radiologist will have to answer that.  We won’t find out for sure till Thursday.  Good note, it is shrinking, all of them are.  YAY!  We have to take Kohlton to see his ENT to get his ears checked.  He will be sedated for them to look in his ears.  Not sure when that will be set, but I will update as soon as I know.  Ok more good news, we get to go every three weeks for blood work and chemo now!!  YAY!! I am so stoked about this.  This means we get to have more fun days!  On that note, we did get some not so good news today.  Kohlton is considered neutropenic.  (Neutropenic means having a low number of white blood cells. White blood cells fight bacteria and infection.)  His neutropenia levels are 452.  They should be between 3000 and 9000.  So, because he is considered neutropenic, he could not do chemo today, which means we will go back on Monday for the regular Monday schedule.  We will pray his counts go up.  As long as they go up we can do chemo next Monday and then every three weeks from then on.  If not, we will go every week until his counts are okay to do the chemo then every three weeks from then on.  With him being neutropenic comes more risk.  We cannot go anywhere until Monday.  If he gets a fever, we call the doctors while driving to the ER.  Upon arriving, they will admit Kohlton to the hospital.  He will stay until his counts are okay to release him.  So, it has been a very uplifting but challenging day.  I feel like we got hit with the good news/not so good news bus today.  I feel torn in so many ways.  Please keep praying that Kohlton’s counts go up and that we can continue his treatments.  Please pray for all of us through this tough time.  We appreciate everything everyone has been doing to help us out.  Thank you all so much! 

Kohlton really concentrating, can you tell?  Just look at that tongue hanging out.

Mrs. Tia and Kohlton.  This is how we have to go to the appointments.  We go with a hat on and a mask on.  He is such a trooper.  He usually wears it until I tell him we can take it off.  Such a good boy! 

Kohlton playing with Mrs. Tia at the Neumors clinic.  So handsome!

I found out that there are 4-5 patients being seen for LCH where we go.  Most for maintenance appointments.  Which means just following up to make sure it is still in remission.  I think Kohlton and Brian might be the only ones going through the treatment stage.  They are such strong little boys!  I am very thankful for my family.  Even having to go through all of this, I am more in love with my family everyday.  AND MORE THANKFUL FOR MY FAMILY EVERYDAY!  I cherish every moment!  Thank you all so much!