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!