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!