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!