Sorry so late, tests and results, YAY!

So sorry it has been so long since I have updated the blog.  I’m not sure what got in to me.  This update has a bit more than most updates since it’s been so long.  Again I am so sorry and will try to update more often!

Tommy and I woke up Thursday morning to Kohlton screaming it hurts.  He had a fever and kept saying his arm hurt.  Right off the bat we started calling the doctors.  Kohlton’s fever was in the red zone, so we had to get Kohlton in to see someone.  On Wednesday he had a fever but it went away and was never in the red zone.  Thursday was different.  Kason had a doctors appointment, so Aunt Diann came I took him to the doctors while I took Kohlton to Nemours.  Once we got to the Nemours clinic, we saw Dr. Brown.  She ordered a few test.  The first test was what they called, “a snot culture”.  This test was awful.  Kohlton’s nose was pouring blood after it.  After that we had to head for a chest x-ray, Dr. Brown thought she heard some echoing in his lungs.  Kohlton did great for the x-ray.  We then headed to the infusion center to get blood work and to start a drip of antibiotics, just to be safe.  Once we were done there we went back to the Nemours clinic to see Dr. Brown again.  All the results were fine.  There was no sign of infection in any of the test.  Yay!  No pneumonia.  She even said it was safe to get the scans on Friday.  Aunt Diann kept Kason till about six on Thursday to let Kohlton and I take a nap and relax a bit.  Thank you so much aunt Diann! 

On to Friday, Victoria got here to watch Kason while Kohlton and I headed to Sacred for his scans.  The MRI was scheduled at 1pm, which meant no food or drink for more than 12 hours.  Kohlton did pretty well at not asking for food and drink.  I was surprised.  We were supposed to arrive around 1030 and do the full body x-ray before the MRI and then head to the MRI at noon.  We got there just as we were told.  This was a very frustrating day.  The place we had to check in to could not find Kohlton on their schedule for about 30 minutes.  Turns out his name was reversed on the schedule.  Once we got called back to the registration desk they told us he would have to be sedated for the scans.  So no scans till after the MRI.  So with about an hour to waste till check in time for the MRI we headed to the MRI waiting area to watch some cartoons.  Since everyone there is not allowed food, I thought we would be okay with no visible food.  There’s even a big sign “No food or drink”.  As soon as we got in there a little 3 year old boy came over trying to shove chips in Kohlton’s mouth.  I was furious.  The little boy didn’t know but his dad said “No honey, he can’t have any food just like your sissy couldn’t. “  Seriously, dude?  Come on!!  I was able to get Kohlton to not eat the chip and to not beg for food/drink.  Tommy showed up at about noon for the sedation and test time.  We got taken back at around 1245ish.  Then at about 115ish they took Kohlton back for the scan.  Tommy left a little after.  Kohlton usually calls for Tommy after sedation so we figured if he didn’t see him it would be better than Kohlton seeing him and then Tommy having to leave 2 minutes later to get back to work.  I think this tore Tommy up having to leave and him not being able to comfort Kohlton when he woke up.  Once Kohlton woke up I headed to the recovery room.  He is a trooper!  I got to hold him while rocking him in the rocking chair.  I won’t lie, I loved every minute of it, even when he was asking for dada.  At about 245ish the nurse checked on Kohltons other scans and I was told he could not be sedated for it, really? So the time in the waiting area was a waste.  We then had to head up to the x-ray area where they took Kohlton and made me wait in the waiting room.  They have never made us be in the other room.  Usually you have to be with him because he is two.  So, I got to hear him screaming the entire time.  The nurse even brought him to the window screaming and crying for me while looking at me, for what she called his break from the x-rays, and then took him away.  I couldn’t believe it.  I couldn’t hold him to calm him down.  All I could do was look at him through the glass.  It was awful.  I felt like I was teasing him.  After all of that I got to take my baby home.  That was the best feeling of the day! 

Our handsome man before chemo. He's so sweet!

On Monday we were all nervous because this was the day we would find out the scans results.  Kohlton and I headed for blood work while Mrs. Victoria watched Kason.  Kohlton amazed me!  We had Mr. Eric, he was the first guy we had (the one who kept moving the needle on him).  Mrs. Bonnie was busy and we had to let Mr. Eric do it.  Kohlton sat in my lap and was so good.  He whimpered a bit when the needle first went in, but after that he didn’t cry or move at all.  I was so proud of him!  He then told Mr. Eric thank you and to have a good day.  I think Mr. Eric softened up a bit.  We then headed home for a bit.  At about noon we headed up to the Nemours for his doctors appointment.  Kohlton got to see his fabulous girlfriend, Dr. Brown.  She gave us his test results.  Tommy and I are happy with them.  Basically, the tumors are still there but they are much smaller in size!  We are so thankful for that.  Sure, we want them to be gone but the fact that the tumors are responding to the chemo is great!  The tumors used to be large enough that the machine measured them as three dimensional.  As of right now the tumors are small enough to be measured as two dimensional.  This is awesome!  As for the bones, they are not showing any sign of growth.  Dr. Brown is going to talk with Dr. Parmley about that.  We hope that we can wait a bit to see if they will grow before heading to the neurosurgeon.  We really don’t want Kohlton to have surgery again, unless it’s absolutely necessary.   After the doctors appointment we headed to the infusion center for chemo time.  Chemo went great.  Kohlton fussed a bit when they were cleaning his chest but that was it.  He didn’t cry when they accessed him instead he showed them his cars.  I wanted to cry.  I wanted him to not be afraid but at the same time it was sad to see him not being afraid, if that makes any sense?  All in all Monday was a great day.  Tommy was able to be there for all of it, we got great news, and Kohlton did wonderful!  

The week went great. Nothing big or any scares to report. Today Tommy and I were kind of cabin fevered out! So we headed to the zoo with the boys. We figured it was all outside and wouldn’t be very busy. Laurie, Jarrell, Brayden, and baby Emma joined us. We had a blast. We were never around a bunch of people and we felt safe. We had a great day. The boys got to see all the animals, even the baby gorilla. It makes me thankful for days like this. Sure the weather was not great but we had a great day! It was nice to be out doors and not just in our back yard. I think Kohlton at first was on speed from the excitement of being out. It was funny seeing him all over the place. Kohlton and Kason had a blast. They even got to have a glow in the dark bath tonight. We ran the bath and put a bunch of those glow sticks in the water. Kohlton didn’t want to get out. A very good day!

Daddy and Kason feeding the birdies.  So sweet!

Kohlton and if you look real close you'll see Brayden sticking his head through, well trying to.  Ha Ha.  They had a blast!

Kohlton showing Kason his nose.

Please keep praying for all of us.  We feel them all!  The more the better!  Thank you all for the prayers, for dinners, and for supplies needed for the boys.  Thank you all so much!  Tomorrow is another Monday.  I will try to update tomorrow night.  Thank you all again for everything!

Phase one completed, on to Phase two.......

Kohlton and I started the day like every Monday, we went to Sacred in Pace for blood work.  When we got there I specifically asked for Mrs. Bonnie.  She was the first lady that drew his blood and knew how to handle Kohlton better.  Blood work went well.  Kohlton did cry and try to climb away but I think he’s starting to know what’s about to happen.  As soon as we leave the house without his brother, he knows its chemo day.  He starts crying as we leave.  It breaks my heart.  We went home after blood work for about two hours to play with Kason and Mrs. Victoria.  At noon we started to head to Nemours for Kohlton’s doctor appointment and then to head to his chemo. Kohlton got a surprise.  Tommy was able to be there a little longer and was even able to go to the infusion center with us for a bit. We saw Dr. Parmley this time.  I think Kohlton was a little upset he didn’t get to see his girl, Dr. Brown, Ha ha.  Dr. Parmley came in and said Kohlton’s labs looked good.  He scheduled Kohlton’s first round of check-up scans for Friday.  Friday, Kohlton will be having a full body x-ray and he will also be sedated for an MRI of the skull.  The following Monday we will get the results.  This Monday, the 20^th, we will start phase two of chemo and discuss the scans.  What we will be discussing is if the chemo has helped and by how much it has helped.  We will also talk about the holes in his skull.  The scans will show if the holes in his skull are replenishing themselves.  If they have not grown enough for Dr. Parmley’s liking, he is going to schedule an appointment for Kohlton to see a neurosurgeon.  Hopefully we don’t have to do that.  If we do, there are three options the neurosurgeon will decide on.  Here they are, 1) he can go in and shave a little of skull around the holes to help them start growing back, 2) He can put metal plates in, or 3) radiation.  Dr. Parmley doesn’t want or think the neurosurgeon will decide on number 3 but he did want to let us know that it is an option.  So these scans on Friday determine a lot for us.  We pray they see the bones growing so Kohlton doesn’t have to go through anymore.  After the doctor appointment we went up to the infusion center for chemo.  There we got the same nurse from last week.  She started off by saying, “you guys look familiar, have I met you before?” and she was not joking.  It all went well.  There was another nurse who came in and helped hold Kohlton with me.  I appreciated that so much.  It helps a lot to have someone help me so I can love on him.  All in all the day went pretty good considering everything we had to do.  Kohlton has had some side effects still.  So far he has quit the chills and sweats.  He still has diarrhea and sometimes constipation.  He is doing great.  He’s acting like a little 2 ½ year old boy, running his momma and dada wild!  We appreciate you all for the prayers and for everything else you all have or are still doing for us.  Thank you all so very much!  Please continue to pray for all of us and for the results of the scans to be amazing, for there to be no more histiocytosis.  A friend of mine did tell me today that what he has is also called “Ghost Cancer”, sounds scary.   I know for us, it is scary but WE ARE GOING TO BEAT THIS!  Thank you all again!  We love you all!

Kohlton and Kason have had an amazing Valentine’s Day.  We were able to get them something small and they are in love with their gifts.  Tommy and I have enjoyed watching them play.

Please feel free to leave a commentfor Kohlton, I'll read them to him!

Kohlton's ENT appointment....

We had Kohlton’s ENT appointment today.  We got there about 40 minutes early, just to be safe and have plenty of time to fill out paperwork.  We ended up being taken back to the room and waiting almost an hour after his appointment time for the doctor.  Tommy and I were pretty frustrated.  We kept trading Kohlton and Kason back and forth.  Once the doctor came in, he looked in Kohlton’s ears and said he would need to have him sedated to be able to tell us for sure what was in his ears.  Tommy and I felt as though this appointment was a waste of time.  They knew Kohlton was 2 ½ and would not sit there to let them put instruments in his ears.  So, our questions were not answered today.  I think that’s what we are more frustrated about.  We thought we would be finding out if the lesions in his ear were part of the histiocytosis or if it was a Cholesteatoma.  So as of right now we have no idea if he will need a 4 hour surgery to remove the Cholesteatoma or if he will need the second chemo during phase three.  The doctor’s office will be calling us to let us know what day Kohlton will be sedated for them to look around in there.  We don’t want him to be sedated again but we do want answers.  As soon as we know something I will let you all know.  Kohlton is feeling great today.  His friend came over to visit him.  Kohlton had a good time with BrayBray and is passed out right now from playing so hard.  I like times like that, when Kohlton can feel and play somewhat normal.  Tomorrow we get the helmet measured for it to be decorated.  I am so excited to see it all done up for him.  I can’t wait to see his smile when it’s finished.  I’ll have to take a picture of his smile and put it on here for all of you to see.  Thank you everyone for all the prayers.  Please keep them coming!

Rountine is setting in.....I think....

We started the day with blood work at Sacred in Pace.  We had a different guy, not Mrs. Bonnie.  He was nice but still didn’t know how to work with little ones.  (I’m not trying to say they don’t know how to do their job, I’m just saying maybe they shouldn’t be taking little ones blood.)  Kohlton cried the entire time and all the guy would say was “stay still!” I was not cool with him practically yelling at my child telling him to stay still.  How is a two year old supposed to stay still for that?  He was pretty still; he would jerk his arm back that’s about all.  He ended up being stuck in the arm and then a finger prick to finish it.  The guy couldn’t get blood out of the arm.  We went home and had some fun with Mrs. Victoria; she was watching bubby (Kason) while we were gone.  At around noon we headed on up to the Nemours Clinic for our appointment.  Kohlton was asleep until, Dr. Brown came in to the room.  He woke right up for her. I think he’s got a crush on her!  As soon as she came in she gave Kohlton her badge, it has a miniature cow on it that Kohlton likes to play with.  The appointment went well.  Kohlton’s blood counts look good she said.  Tommy was able to be there, but he’s going to schedule more time off next time to be there longer.  Kohlton and I love seeing him there, but we understand he has to work.  We ended up getting a stomach x-ray because Kohlton keeps saying his belly hurts.  We haven’t heard anything yet so I’m assuming it looked fine.  Kohlton did well for the x-ray.  He cried but overall did great.  He didn’t try to get away.  He just laid there like a big boy.  I am so proud of him!  After the x-ray, we headed up to the infusion center.  The check in lady is getting nicer.  Once we got back to the room, the nurses brought Kohlton some graham crackers and a juice cup.  He kept asking for popcorn chicken, from Wal-Mart.  The days I work, I go and get him some.  He loves them!  Chemo went better this time.  I was able to hold and comfort him while another nurse held his legs and arms still.  It was nice being able to talk to him and calm him down through it.  I felt like his momma again and not the mean wicked witch.  Hoorah!  Other than waiting for the chemo, the treatment went pretty quickly.  When we got home, Kohlton got to see his bubby and was so excited to play with him.  Aunt Laurie and BrayBray came over to surprise Kohlton with some popcorn chicken.  I think he loves them even more now.  The day went pretty good.   Kohlton started off not feeling the best but by the end of the day he was 100%.  I feel it was a good day emotionally too.  Kohlton and I both didn’t cry much and I think we are starting to get used to this routine.  Hopefully the only thing that changes is not having to wait an hour in the room for the chemo to get there.  They won’t mix it till we check in at the infusion center, it takes 30 minutes to mix it and about another 30 for them to check us in and go get it.  We’re all doing pretty well.  We start tapering Kohlton off his steroids today.  We are starting another medicine for the yeast rash on his butt.  No other side effects so far other than diarrhea, the shivers, stomach aches, and the sweats.   We are so thankful for all the prayers that are being sent.  Please keep them coming.  We are also thankful for all the dinners, diapers, wipes, formula, and so much more that so many of you have donated.  You will never know how much this is helping us out.  Thank you all again for everything and please keep the prayers coming.

Kohlton has his ENT appointment Tuesday at 145.  I will try to update after.  This appointment will determine if Kohlton will need a second chemo during phase three.  It will also tell us whether or not he will need surgery for his ears (to remove the tumor behind his ear, Cholesteatoma).  Please pray he won’t need the second chemo or surgery.  Thank you all so much!

Hopefully not a new side effects. . .

Kohlton woke up screaming Tuesday night. He said his belly hurt. I gave him some medicine and he slept great the rest of the night with us in our bed. I know, we aren't supposed to snuggle with him for three days after chemo but a big WHATEVER is what I was thinking with my baby boy crying. On Wednesday I still went to work because he woke up in such a good mood and was playing like crazy. I called Victoria, our amazing babysitter, to check up on him and she said he wasn't eating much. He ate one piece of pizza, that’s not like him. He usually eats all day long. When I got home from work he was acting himself again and of course eating everything in sight.  His belly hasn’t hurt much since Wednesday.  I’m thinking he was just gassy.  I pray that’s all it was.  He is still going potty pretty frequently. If it starts hurting again I’ll be taking him to the doctor just to be safe.  He’s such a sweet boy!  He’s so good to his brother, Kason.  Kohlton and Kason play all the time together.  Soon Kason will be crawling and they will have even more fun together. 

Kohlton had a blast with his stickers.

Tommy and I have some handsome boys!!

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

Go here, go there....a few places to go today.....

Well today was a, several places to go challenge day.  We started our day off with blood work at 915am at Sacred Heart in Pace.  We had a different person take Kohlton’s blood today.  Let’s just say he is not a professional at his job.  He didn’t say but maybe three words to us and those were “Come on back” that’s it.  He put the needle in and started moving it around side to side to find a vein, instead of finding a vein and then sticking it, not to mention he held Kohlton’s arm like he was about to break his elbow in half.  He obviously does not know how to work with little ones.  Kohlton screamed the entire time.  It was worse than last week.  Mrs. Bonnie will now have a standing appointment with us on Mondays.  Hopefully she does not take one off.  I know, I know she has a life too, I can’t expect her to not take time off.  After that we headed home for a bit before our chemo appointment.  At around 140pm we get to our oncologist appointment and Dr. Brown said Kohlton is doing great!  His blood counts look great and he does too!  Yay for good news!  She did send us to the surgery floor to have Kohlton’s incision from the biopsy looked at since he keeps bumping it.  So we went down to the surgery area.  There they shaved his head a little more, cleaned the area, and sutured it up.  He finally has a bandage that feels sterile.  They sent us home with plenty of stuff for cleaning and for bandaging it up in the future, if it happens again.  We have to keep a close eye on it to make sure it does not get infected.  On to the infusion floor we went.  This floor has just started working with children so I’m going to say that is why the first lady we saw was not nice.  While we checked in, Kohlton grabbed the glass window and shut it.  I thought this lady was going to smack my child in the face.  She was so rude.  I looked at my sister, Kacey, who went with us and made sure the lady knew I did not like that.  I could not believe it.  Any two and a half year old would have done that.  On one of the last post I had told you guys about the infusion center having a separate area for the children.  Well, they do but you have to weigh in at the adult center and check in there as well.  We went back to the children side where Kohlton was to get his chemo and for us be on our way. (It usually takes about 5-10 minutes.)  With this new system they are trying to do, it took an hour and a half.  We sat in the room for about an hour before they even did anything.  It was ridiculous.  We were all tired.  Kohlton had a new nurse doing the access and chemo.  I know they say that children will get used to it but I don’t see how Kohlton could especially with all these changes.  And with how his mommy or daddy has to hold him to get it done.  The nurse tells me how to hold him.  It is so hard to hold him down and him know it has to be done and that I don’t want him to hurt. I think having the parent hold the child down is beyond cruel to both the parent and child.  Once we got home and changed his clothes he started screaming “no mommy, no hurt”.  I started to cry, he thought I was going to make them do it again.   Back to chemo, he screamed almost the entire time.  Kacey got him calmed down by showing him a book on trucks.  She was great at it.  Being home now is great.  Along with the different places being added and more appointments being made we found out with these changes come financial changes as well.  We used to go to Nemours and because they did the treatment there, there was no copay owed.  Now we have to pay weekly, $40 copay to Nemours and once the infusion center gets straightened out, it could be between $40-$100.  That’s anywhere from $80-$140 a week. I asked to talk to the social worker (I was told she could find a grant or something to help with those amounts.)  After talking with the social worker, we now know that since they have not distinguished whether Langerhans Cell Histiocytosis is cancer or an auto immune disease, (even though chemo, steroids, and sometimes radiation is the only thing that kills it) no grants are available.  Even though we see an oncologist weekly and Kohlton gets chemo weekly, it is not 100% labeled as cancer in the medical dictionary, or whatever you call it.  It grows like cancer, looks like cancer, and the only way to kill it is to treat it as cancer, NO GRANTS!  So this parent is NOT happy with these changes.  Tommy and I will do whatever it takes for Kohlton to get his treatments.  I’m not telling you guys this for handouts.  I am telling you all this so you know what we are going through and will go through.  That is the point of this blog, for me to update you all on Kohlton and for me to get relief from this entire situation.  It helps for me to type all of this.  I am going to stay positive and pray that everything will work out!  I want you all to know we appreciate everything you do for us.  Please keep the prayers coming.  Kohlton is playing like he always has!  The prayers are working!  Thank you all!  Next week we will have blood work Monday AM, doc appointment at 1pm, and the infusion center right after.  I will also find out more on his future treatments and scans to see how the chemo is doing.  I will try to keep you all posted through the week.  Thank you all again!  Please keep praying!

KOHLTON'S OK, we had our first E.R. visit.......

At about 230ish, we had our first big scare since Kohlton started chemo.  Tommy heated some food up, and made Kohlton a hot dog, with some chips, and his juice cup, and I was making an egg sandwich for myself.  Kohlton looked at me grabbed his head and said “Momma hurt”.  I looked at him and there was blood all over the floor.  It looked as if it were just pouring out of his incision, where one of the biopsies were done.  Tommy grabbed something to put pressure on his head while I grabbed a towel, honestly I can’t even remember how it all went.  All I remember is running with Kohlton to the car and Tommy chasing me with the keys.  I headed to Sacred Heart while Tommy stayed here with Kason and called a friend to ride with me so that I could put pressure on Kohlton’s head.  I ended up driving straight to Sacred.  Let me just tell you, if you see someone with their emergency lights on honking at you….MOVE THE CRAP OUT OF THE WAY!!  Seriously, get off you flipping phone and move!  I could not even tell you how many people didn’t even notice or care to move.  As soon as I got to Sacred, they took Kohlton and I in a room by ourselves so that Kohlton would not be around sick people.  I think it was strictly for chemo patients or at least for people with low immune systems.  Kohlton’s Uncle Jur-rell showed up to help till Tommy could get there.  Tommy had to get Kason watched and get someone to cover his on-call shift at work.  Once we got to our room in the pediatric emergency room, the resident pediatrician came to talk to us.  She basically had no clue what she was talking about.  Jarrell and I had to keep correcting her.  (The place Kohlton hit was were the biopsy on his head was, they were able to remove the tumor there and Dr. Lewis, the pediatric surgeon said the tumor had eaten some of the skull.  She said the hole was about the size of a quarter.)  The resident in the ER was telling us that there is no hole and after we argued with her, she then told us she saw the scans and there is no hole.  So, in a polite way I told her the oncologist/surgeon must be wrong then.   She also said they were going to treat him like a regular kid meaning  just stitch it up and send him on his way, is how she put it.  She also looked at the cut, pressed on it and guess what, it started pouring out blood again.  Uncle Jur-rell stepped in at this point and made her do her job.  I was about to go off on her.  I was NOT going to let her touch my child again!  She acted as if it were nothing.   I think she started to panic.  She called the oncologist and surgeon, then came back to tell us about the x-rays ordered for him.  Finally, something was being done.  The x-rays were traumatic enough, I won’t even go in detail about those.  Dr. Wack, the real doctor, came in later to let us know that Kohlton’s scans were okay and that he was going to clean the wound and stitch it up.  Once cleaning it, we figured what happened was the glue from the biopsy must have gotten stuck on part of the kitchen table and the table ripped it off.  Awful! Needless to say our table will be gone soon.   They didn’t have to stitch it or anything but we have to keep an eye on it.  It started to clot and form a scab before we left.  It’s a tiny part of the incision that basically got yanked.  Tommy showed up a little before we left, Kohlton was so excited to see him!  With all that blood and a trip to the hospital, I am glad to be home.  Kohlton is acting as if nothing happened and is eating everything in sight still.  Both Tommy and my nerves are shot!  I’m sure I’ll be up all night checking on Kohlton.  Thanks for all the prayers and please keep them coming.