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!