Thought we had a routine starting. . .

Since we have been home we have been working towards a routine.  The doctors said routine is what Kohlton is going to need.  At home our routine is pretty much settled but on Mondays the chemo days, we thought we had that down as well.  On Friday the Nemours clinic called to change Kohlton’s appointment on Monday.  The new plan was we would go to Sacred Heart in Pace and have blood work and then go to the Nemours clinic for chemo in the afternoon.  The reason we have to do it in two visits now is because they need Kohlton’s blood count before they can give him his chemo.  So, Monday morning starts and we head straight to get the blood work.  Kohlton and I get there at 915 am and the office cannot find the orders for his blood work.  I was told to have it done before ten, and to not wait in the waiting room, the office would take him right back because of him being a chemo patient.  At about 930 am the lady finds the paperwork.  I was getting a little aggravated with us sitting there for about 15 minutes when we aren’t supposed to be in any waiting rooms.  We finally get to the lab area and guess what, had to wait in the waiting room.  Mrs. Bonnie takes us back and basically does an IV that has this syringe on the other side to get his blood.  This broke my heart!  Kohlton was crying hysterically.  How could he not, some strange lady was sticking him with this needle and his mommy is holding him down to let her hurt him.  It was awful.  Mrs. Bonnie finished what she needed to do and he was a trooper.  He even said, “thank you Mrs. Bonnie” and with tears coming down his face.  Mrs. Bonnie started to tear up.  All I could think was I have such an amazingly sweet boy!  Once we were done there we headed to McDonalds to get him some pancakes, to take home.  I had to, I felt so guilty.  We got home and he ate like crazy.  We got to play at home till around 245pm, then we had to head to the Nemours Clinic for checkup and chemo.  I gave him his meds and we headed out.  While we went to the Nemours clinic, Kristie, one of my sisters had to take Kason to get his checkup and immunizations, which is very important to make sure no live immunizations.  She did a great job.  Kohlton and I met Tommy at the clinic.  Kohlton did great for the appointment, even when Dr. Brown came in and had to check him out.  Tommy was on call for his work so he wasn’t able to stay the whole appointment, which broke Tommy’s heart.   After Tommy left, Mrs. Jennifer, his regular nurse came in to give him his chemo.    Kohlton loves her!  I think he’s going to have a thing for blondes.   Ha ha.  It took Mrs. Jennifer about 5-10 minutes to access his port and give him his chemo.  Again, I had to hold him down and hear him scream.  I don’t think I’m going to be good at that.  Even though he cried when Mrs. Jennifer had to access his port, he did great.  Mrs. Jennifer even gave him a book and teddy for being such a good boy.  He talked about his goodies the whole way home.  When we were leaving Nemours, we found out there is another change to our schedule.  From now on, Mondays will have three places to visit.  On the 16^th, it was just the Nemours Clinic, on the 23^rd it was Sacred in Pace and Nemours, and now on the 30^th it will be Sacred in Pace, Nemours, and now the infusion center.  I think this is a little too much for him but I have to trust that the doctors are doing what is needed for Kohlton.  Hopefully this will be the last time the appointments change.  I hope Kohlton will get the same person every time we go to these places, Mrs. Bonnie at Sacred, Mrs. Jennifer at Nemours, and hopefully the same person at the infusion center.  I know he liked Mrs. Bonnie and Mrs. Jennifer, they were great with him.  I'd like for him to have a familiar face so he could feel somewhat at ease, if that makes any sense?  All in all Kohlton is still responding good to chemo.  We are so thankful for all the prayers.  Please keep them coming!  Please know the prayers are helping all of us!  Thank you all again!