No chemo this week.

Kohlton started getting a cough on Saturday. I was a little worried it would effect chemo. Turns out he has RSV. His counts are too low to do chemo. We have been told that if he gets a fever we are to give him Tylenol, take him to the ER, tell them he's positive for RSV, and to ask for a chest X-ray to make sure it doesn't turn into pneumonia. Please pray for our sweet boy. Kason is also getting sick now so please pray for both of them. Last time they had RSV, kohlton wasn't going through chemo but it got bad and they both had to have breathing treatments every two hours. Please pray this doesn't happen. Please pray it clears up!  Thank you everyone so much for all your prayers!  We are so thankful for all of you!

On to MD Anderson/Texas Children's Hospital

We will be sending all the info over to get in with one of the top specialist in the U.S.  We were trying to get into a different facility but they won't be doing treatments for another 3-4 months. With that being said the doctor there did call to let me know about a few things. Kohlton does has a reoccurrence with LCH which is in a few places. The LCH is on his skin, in his pituitary gland, and (this is new to us) in his central nervous system.  We will be trying to get in with Dr. McClain in Houston, this route is going to be more on us financially but we will get thru it, The other facility was going to cover everything. Some other things the doctor told me was to demand a pet scan, to demand the endocrinologist keep track of every part of the pituitary gland (not just the diabetes insipidus), and that reoccurrence chance is more like the 60-70%. This was not the news we wanted but we will get through all of this!  Please pray that Kohlton gets in ASAP to Texas  Children's Hospital and we get more info. We will be listing our house in jan/feb and moving back into our rental house so that we will have less on our plate.  This will for sure be a challenge considering it is 1200 sq feet but our family is what's important not the house.  Thank you everyone for all your prayers. Please keep them coming!  We need them!!

Here's a picture tommy got last night. The boys have their own beds but when tommy went to check up on them this is how he found them. They are such blessing!  So thankful for every minute I have with these boys!  

Short will post more later

Everything has been going great. Kohlton had very little side effects. He is feeling good and has even had some family come visit. Our cousins came to visit and he loved every minute then the following weekend my sister and her family came. He has been having so much fun, Still gets winded easier but overall great. We are in the process of trying to get Kohlton into a speciality facility. We are praying very hard that he gets in!  Please help us pray for that.   Thank you everyone for all the prayers. I will update more in detail in a bit.  Thank you for everything!!

Also, this is a fundraiser our friends are doing for us it ends in a few days. If you feel lead to help we would greatly appreciate it.   Www.superkohlton.com
Thank you!

4th week/month

First all scans and blood work came back great for Kason. He's still having leg pain from time to time. It worries us because he screams when it happens. Doc is going to keep a close eye on it. We are so thankful for Dr Ghiglino. He is such an amazing doctor to always go above and beyond for us. Such a great doctor!  HIGHLY RECOMMEND HIM!!  

This week, We don't really know what to expect this go around. We are so nervous. So afraid he'll have that crazy fever again. Poor guy is so excited to see his chemo ladies tomorrow. He always looks at the bright side of things. I love him soooo much!!  And his bubba!  And my hubby!  I am so very thankful for each one of them!  Ill post more tomorrow to update everyone. Please please please pray hard for no side effects!!  Thank you everyone!!  Some friends of ours made a website with lots of info on it. Check it out!  WWW.SUPERKOHLTON.COM

Thank you for all the prayers, please keep them coming!!

Here's some pictures of the last week. 

My knight in shiny armor!  Love this boy!!

 Feeding the birdies at "boo at the zoo". 

Bubba too. He's not too sure about it. Ha ha. So handsome!!

Sweet boys!!  They were actually getting along for once. Ha ha. 

Halloween night. Trick or treat!!

His second Halloween costume.  Made by aunt Angie. He wanted to sleep in it. He loves this!!

We taped glow sticks to them and let them walk around in the dark. We all enjoyed it. So funny!!

I have video but it won't let me post it on here for some reason. Boo!!

Chemo stinks part two!

Kohlton on the horse swing at the corn maze. So sweet!  

Kohlton is doing ok right now. He has had another side effect appear. He has sores in his mouth. It's hard for him to eat/drink. At first we thought he just bit his tongue but turns out it is a side effect of chemo. Doc just called in some mouth washes to help with pain and making sure they go away. Poor guy is so pitiful. Please keep our babies in your prayers. We have a doc appt today for Kason. They will be doing blood work and may do X-rays. Will keep everyone updated. Thank you!!  We appreciate all the prayers!!

Kason at the corn maze.  He loves it out there!!  Both boys do!  I have some handsome boys!!  Thank you everyone for all the prayers!!

Chemo stinks!!

All chemo Stinks!!  Monday went by. Kohlton did great with his two chemos. He didn't eat much but overall didn't have to bad of side effects. Tuesday we got to the infusion center for his chemo and his heart rate was high. So they wanted to wait and redo his vitals 10/15 minutes later. When they did that he had a fever around 102 and his heart rate was a tiny bit higher. They ended up drawing labs for cultures and giving him some antibiotics. They still did chemo because the fever is pretty common for this chemo and his counts were good. They sent us home after. Tommy and I fought with his temp and him not being able to hold meds down till about midnight when we finally got it to drop. We then went to sleep around 1230. I set the alarm to give him more meds at 230 when I gave it to him, he instantly started getting sick and his fever was 104.1. We jumped up and headed to the car to take him to the ER. While tommy was buckling kohlton in the car, kohlton had a seizure. We called 911 and once they arrived we headed to the ER.  When we got here they have him antibiotics and IV Tylenol. He seems to be doing well right now. He is having a little difficulty with some of his motor skills, mainly mouth. He did bite his tongue during the seizure. They have decided to admit him. Not sure how long we will be here. His fever seems to spike wether he has Tylenol or not. Like we could give him Tylenol and then 1 hour later it be 104. It's crazy!  Please keep our baby in your prayers!  And us, we are pretty freaked out. And of course Kason. He is such a trooper going from place to place when we are in a rush. Tommy will head home as soon as we are admitted to get clothes and head back up here. Then I will head home to so the same and give Kason some one on one time. Thank you everyone for all you prayers!  We feel them all!!

Him at chemo today. So not feeling good!

Third week/month.

We went in to this week very nervous. We were told that Kohltons sed rate was still elevated a week ago which means inflammation somewhere. The doctor said if it were still elevated this time they would so the scans almost emergent. The sed rate elevated could mean infection or a tumor that we don't know about. Thank goodness his sed rate is normal!  Yay!!  Very happy about that good news!  Kohlton so far is not feeling great but he is still playing a bit. Please keep praying for our baby!  We are so grateful to all of you for everything you all do for our family!  Thank you all so much!!

Here's some pics from the last week or so. 

Here's today before chemo. He loves his port buddy shirt and just had to wear his super kohlton beenie. 

Waiting to launch rockets with daddy. 

Bubba and momma. Love both my boys so much!  

Stomping in puddles at church. Handsome boys. They had to wear their rain boots. Love it!

Jumping at the peanut festival. Sweet boy!

Hats from papa and TT. They love them!!

Sweet boys playing together. One of the few minutes in the day. Ha ha. 

Thank you everyone. Please keep praying for my baby and our family!  We so appreciate everything and everyone!!

We are home.

This will be short cause all we've done since we've been home is really hang out with each other. Love it!  Kohlton had chemo and antibiotics this morning before we left the hospital. He is doing pretty good. I think seeing his bubba takes his mind off of things. They love each other so much. They have missed each other too. Nurse comes tomorrow to show me how to do everything. I thought they'd show me in the hospital but now they are sending the home health care to our house. Let's pray I'm a great nurse. 😊  I will update more tomorrow. Thank you everyone for all the prayers!  Please keep them coming. We love you all!! 

Week four so far.....

We have had a busy week so far. Kohlton is not taking steroids this round of chemo per protocol. So they have warned us that the side effects might be worse. Even told us day two would almost guarantee a fever. So Monday Kohltons appetite completely went away after chemo. I had to give him some meds to help with nausea but he did pretty well over the day. Tuesday came and we were told that Kohltons sed rate in his blood work came back high, normal is 0-10 and he was at 30. So they informed us that he would be having more blood work Friday and if it was still high we would need to see the doctor. Well just like they had warned us day two, Tuesday, he got a fever. Not only did he have that he also had nausea, actually got sick, and had leg pains. We had to go to the ER for the fever and they did blood cultures, gave him antibiotics, and sent us home. He still got sick early this morning and had a fever. Once we woke up to start the day his fever was gone but he still was nauseous. They did chemo still. He started feeling not so hot during/after chemo. He started getting the chills and a fever again.  We were done with chemo and counts were good so we got to go home. As I was driving out of the parking lot the ER called me to tell me to come ASAP to the ER. They said Kohltons blood cultures grew a bacteria.  So we had to turn around and go straight there. Once we got there they did blood work and started antibiotics right away. They then moved us to his room where he will stay till he has clear blood cultures. He has an allergic reaction to one of the antibiotics, that he's had several times.  He started pulling his hair out screaming "it hurts mommy, my head hurts!"  Turns out he was having a rash move from the back of his head to his face and down his neck. He is ok now. I won't lie, I was very frightened!  Still am!  But I know God will heal him and we will be home soon.
Please keep praying for him. We are so thankful for all the love and support. And the prayers!!  We got to FaceTime Kason tonight and it was awesome. To see them interact was just amazing!  I love those boys so much!  We both do!  

Please keep our family in your prayers. Especially Kohlton!  Thank you everyone so much!  

Kohlton helping with his flush. He's such a trooper!  And a great helper!!

Snuggle before we started the day today. Love it!!

After his allergic reaction. He fell asleep and was finally at ease. Poor guy!!

Mrs Carly came to visit and drop of a bag of goodies from her and Mrs Rebecca. Thank you both so much!  This will help tremendously!  Thank you!!

Mrs Judy and Weesie surprised us with team Kohlton shirts. These will be for sale soon!  Once everything calms down and I can send/pass them out. I will also be ordering more bracelets. I didn't realize the huge amount of support we would have from all of you. We are so grateful!  and will be ordering more!  Thank you everyone!!

Almost time for week four.......

We are so happy everything has been going smoothly. We were able to visit some friends in Mississippi this past weekend. Kohlton and Kason had so much fun!  They are already asking to go back. 😊  So sweet!  

Monday marks week four, another week of chemo. Agh!  Not sure how this round will go. He won't be on steroids this go around. Good/bad feelings for that. Good means he won't have the steroid rage. Bad means he may have worse side effects. Please pray for our super hero. Thank you everyone for all your support and prayers. We are so thankful for each and every one of you!!  Thank you!!

Kohlton and Kason enjoying their video their uncle josh sent them from over seas. He is such a great uncle. Keep safe over there uncle josh!!  We love you!  

Kohltons new medical id bracelet. He loves it. Says it gives him super powers. Such a sweet boy always looking at the good in things. 😊  www.Laurenshope.com is amazing. If you need a bracelet they have all kinds and are amazing!!  

Went to the science museum when we were in Mississippi. They loved it!  

Thank you all again for all the support and prayers. Week number four we are going to smooth through!  Watch our super hero fly thru it!  😜

The lovely ladies I work with are doing a fundraiser this Sunday, September 8 from 9-2. Haircuts and a silent auction!  lots of goodies!!  Call to make an appointment. 9954040. Thank you to everyone who is involved or will be. We appreciate this more than you know. Thank you!!

Fundraisers for Super Kohlton and biopsy results!

Yay!  Biopsy results are clear of any other cancers. Never thought I'd be saying yay for my sons biopsy to say only one cancer. Crazy!  Kohlton is doing great and bubba is enjoying having him to snuggle with. They are so sweet. Kohlton is still having "steroid induced mood swings". They are awful! But we will get thru this only a few more days and they'll be completely out of his system. He has had what they call a "reversible leg paralysis". His leg stopped working for about an hour. He was screaming because he didn't understand it. So sad. I just sat and snuggled him and told him it was going to be ok. I hate that he has to go through this. He is such a trooper!  

A lot of people have been asking about any fundraisers being done. We have two going on right now. 

The first one is with Mrs Tara Mayeux. She is donating 25% of her Thirty-One sales to us. Here is the link if you'd like to purchase anything. 

https://www.mythirtyone.com/shop/catalog.aspx?eventId=E3561801&from=DIRECTLINK&verify=true

Thank you Mrs Tara for being so kind!!

And the second one is the "prayers for Kohlton" bracelets. We are asking for a donation of 5$ per bracelet. If you are local then I can meet you when they arrive and you can pay then. If you are not local and would like to purchase some we are asking that you send a check to us with a self addressed and stamped return envelope. This way we can mail them to you quickly.  You can contact me thru Facebook or email me to place orders. 

KaraDJames@gmail.com

And I can send you the address to send the check to then. 

Thank you everyone for all your love, prayers, and support through all of this. It really means so much to us!!

Thank you Mrs Linda Kelley for doing a Premier Designs jewelry fundraiser for us!  We so appreciate it!  We truly have amazing people helping us through a tough time. Thank you everyone!!

We will also be doing shirts soon. We will keep everyone updated on that as we know more. Thank you all!! Please continue to pray for my baby and all of us!  

Week one of 52 weeks DONE!!

Well so far everything is going good. Kohlton is such a trooper. He has had a few belly upsets and a few leg pains. He hardly ever complains though.
He does snuggle a lot with me. I enjoy that but hate that he's snuggling with me cause he doesn't feel good. He has gained 5 pounds this week. They put him on steroids to help him gain a bit. It worked. Ha ha. He is so handsome all chunky. Love my babies!  

Yesterday at chemo we found out the biopsy came back positive for LCH. That we knew was going to happen. But we were also told that they were doing further tests to make sure it wasn't another form of cancer too. There was something off on the sample they collected, that's why there is more testing. We are now sitting in limbo yet again. Please pray there is nothing else in the sample. We appreciate all the prayers, mail, and dinners being made for us. We are so thankful for all of you!!

My chunky boy. His cheeks are so squishy. Love him!

Strong boy helping nurse Sherry out. So sweet!!

A feel good moment. Taking bubba for a ride. Bubba enjoys Kohlton driving him around. So cute!  

Thank you all again!!  Will update again soon!

Day one of the new protocol.

Painting while we wait. Such a cute guy. He even found a pretty lady to keep him company. She is so super sweet!

Everything went good. We saw the doctor signed consents for treatment them headed to the infusion center. Kohlton did not like being accessed again but he did an amazing job!  He even said "that didn't even hurt at all", after they accessed him. Such a sweet boy. He is so strong!  The infusion didn't take as long as they had said. From start to finish it took about an hour. Now including doctor visit and that about 1 and 1/2 to 2 hours. Not bad considering we were told 3-6 hours. We will take that. Afterwards Kohlton had a few rough patches. They came and went pretty quickly. He had one that patch were he starting itching all over. Like crazy for about three minutes, then it was done. He had two patches were he acted like he was going to get sick but he didn't. Poor guy. Then he had another side effect related to the bathroom but overall he is feeling good. He even rode his brother around in his power wheels truck. So cute!  And now He's chowing down on some ritz crackers. He is such a strong boy!!  Thank you all for the prayers and meals and so much more!  Please keep the prayers coming!!

Waiting for his chemo with his new friend "the fire spitting dragon". Ha ha. 

Sweet boy got worn out after feeling sick. Poor guy!

After the power wheels ride. Hanging out on the tailgate. Ha ha. So cute. Kason is overly excited!!

Thank you everyone for all the prayers!  We appreciate every single one of them!!

Today was great but now Nerves are a wreck!!

Kohlton woke up this morning to birthday presents that had come in the mail for him. He was super excited!  We then went to his bday party at the ridge theatre in pace. He got to play the games with some of his friends, eat, and watch the movie Planes. He loved every bit of it. He even had the pace patriot fire department come on their fire truck to wish him a happy birthday. Such great people!!  Then we went to pick Kason up and he got to play in uncle Vic's tree house. He could have stayed there forever. Kason got to swim with daddy.  They both had so much fun. After that we came home put his power wheels together. Grandpa came to visit and brought him a present.  We finished the day off with dinner at carrabbas. Amazing day!  We are home all cleaned up and now all I can think about is what's going to happen tomorrow........

It sounds crazy to say my nerves are a wreck when it's my baby boy that is going through all of this. My nerves are a wreck though.  And then I think how selfish!  Kohltons the one who has to get poked and pricked by needles and have IVs of chemo. I'm gonna try to get some sleep tonight and pray that everything goes smooth and that Kohlton has zero side effects!!  My poor baby is soooo super strong!!  Please keep Kohlton and all of us in your prayers!  Thank you all so much!!

His amazing cake from momma bakes cakes!  It was amazing!!

Kohlton, Brody man, and Braybray all watching the movie. 

Kohlton and bubba playing around in his new truck. Sweet babies!!  I love them both soooo much!!

A bunch of planes from aunt kristie, uncle joe, kayden, Josiah, and karisa. 

Thank you everyone for spoiling our little man today!  He loves everyone of his toys. Thank you!!

On to round two....

We will be busy busy the next year.  Here's what is happening......Kohlton has tested positive for diabetes insipidus. This means the LCH is back and in a part of his pituitary gland.  He also has cradle cap on his scalp, which is actually another way LCH presents itself. So he will have another year of chemo. He will be admitted tomorrow am and then Friday am he will have an MRI, full body X-rays, a biopsy on his scalp (to be certain it's the LCH, which he has cradle cap before) and a new port put in.  Then Monday morning he will start his chemotherapy regimen. He will have chemo five days straight and then three weeks off. So basically one week chemo, three weeks off a month. He will have two chemos on Monday and then one chemo Tuesday thru Friday.  These chemos we have been told are a little more intense. Please pray for Kohlton to not get sick and for the chemo to do its job. Please pray we all stay strong thru this next year. Thank you all for all the prayers!  I'll be keeping everyone updated along the way. Thank you!!

This is Kohlton in his new super Kohlton hat. This will help keep him warm in case he needs it. Kason has a matching hat so he'll be super Kason too!!  My two super Ks. Sweet boys!!

Sad news!

Sad news everyone. Kohlton will be starting chemo soon. I will update more in just a bit. Thank you for all the prayers!!  Please continue to pray for our sweet boy and our family. We need lots and lots of prayers!!

Worry, worry, worry. . .

Tommy and I haven't wanted to really talk about this but we need some prayers.  We are really emotional right now so please give us till around april 1st before calling us to check on us.  We can handle text messages and facebook messages just actually talking is what gets us.  So here's what we have been worrying about.....
Ok, Kohlton has had this rash on his face for alittle over a month now.  His last oncology appt, Dr. Parmley had mentioned that the rash needed to go away ASAP.  He did menton that it could be the LCH coming back just in a different form but let me know not to worry about that, it was a small chance.  Well, I have been trying to get it to go away.  It won't!  I took him to our pediatricians fill in, cause the wonderful Dr. G is on vacation, we miss Dr G.  The fill in walked right in and said "Who got Histio X?"  I said "he did but he's in remission now".  His response was, "No that's histio".  Long story short, after questioning him a bit he asked, "did I scare you enough?"  I wanted to punch him!  Really dude?  Did you scare me enough?  Could my tears streaming down my face answer that for you?  Come on man, where is your bedside manner at?  Did you just wake up one morning and decide to no longer use it?  Ok, enough about that.  I'm starting to get upset.  So Kohlton goes to the oncologist thursday the 28th to figure out whats really going on.  Only the oncologist can tell us for sure if the LCH is back.  I have been researching LCH of the skin and realized something else.  Here's what it is........
Kason has had a really bad diaper rash for about a month and a half.  Nothing will get rid of it.  It is not yeast, strep, staph, its simply an irration on his behind, that's what I thought.  I even went to cloth diapers.  Well, while looking up the LCH of the skin the most common type of LCH on the skin, is a diaper rash that wont go away.  Some of the pictures don't look anything like it but then others look identical.  So, after seeing that I looked up siblings having it.  There are so many studies showing it can be genetic and that there are so many families with multiple children having it.  One family has four children, all four with LCH!  What the heck?!!??!!???!  So I will have a ton of questions for Dr. parmley when we see him on Thursday. Once I know more I will try to keep you all updated as soon as I find out.  Please pray for our boys!  Please pray that Kohlton is still healed and that Kason does not get it!  Please pray for both our boys, that they are 100% healthy and that we get some answers!  Thank you everyone!  We so appreciate all the support and help!  We are going to go and try to spend some time at the beach so off we go!  Thank you!

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!