A long road and so much more.

I have to apologize for not keeping this page going. I will try my best to keep it updated. I recently had someone contact me wanting info for their daughter. How selfish of I to not keep this going?!  This was a page to update everyone on Kohlton but to also get awareness out there about LCH. I am so sorry for not keeping that going. 

Kohlton has been doing ok. He was on a maintenance chemotherapy, methotrexate but it was making his liver upset. He recently started Hydroxyurea. So far everything seems to be going ok on it. We are having blood work every week to keep a close eye on it.  We will be there Tuesday for update blood work. We hope everyone had a Merry Christmad and a happy new year.  I will see where I last updated and try to update from then. Thank you all!  Please keep the prayers coming for our sweet boy!  We appreciate you all!!

Chemo week went great and now off to....

Chemo week went great. A few side effects but nothing held kohlton back for what was next. We headed to Orlando/Kissimmee to visit family for a day/two. Now we are checked in for Kohltons make a wish trip. We are at Give Kids the World. The boys are having a blast. We all are. Here are a few pictures of them. I will try to post more soon but wanted to let you all know how he is doing. As of this moment he is passed out from excitement. 😁

Here's some pictures. 

So sorry! It's been so long.

Kohlton is doing great. We saw the doctor in Texas. We tried doing his suggestion with chemo and it didn't work. Kohlton will remain getting the chemo the way he was. He has been such a trooper through all of this. Right now we are enjoying our break from chemo. We go back the third. We have a busy next few weeks coming up. Next week make a wish is throwing kohlton a party to tell him about his trip, then chemo week, and then on to Disney. We are so excited and so ready for a family vacation. A littl break from reality will be so nice!  Please keep praying for our baby. We will post more often or atleast I will try my hardest. Thank you all so very much for all the prayers and support. Thank you!!

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!!