Brian had chemo today. He is down to one last treatment. We are thrilled.
Here's a run down of the appointment(s).
Arrive at Nemours. Get asked to update our information.(Listen people, please go back to your old policy of not asking frequent flyer's to update their insurance, phone number and address at every single visit. Nothing has changed in one week, three weeks, etc.. If you only go to Nemours every year or every ten months or so I get it. It is possible that your visits fall on different calendar years and insurance may have changed. However, if its February 16th and we have already "updated our insurance" three times this calendar year, I think we're good. Let us go up to our floor and not wait to be seen by one of your receptionist.) :-)
Get to the fifth floor and wait in the Hematology/Oncology waiting room.
Go back for Brian to get his height checked, his weight, his blood pressure and temperature. Plus they ask us questions about his meds and the need for refills, etc.
Wait in the play area or our room for the doctor to come see Brian.
Get seen by the Doctor. Here is Brian with Dr. Evangeline Brown.
Next we get our slip to head down to the infusion center. Here we are in the waiting room of the infusion center.
Here's a picture of Brian (and Daddy) checking in. Brian has to physically walk up there and check in. He has to get a hospital bracelet. (Which he hates.) This is at the adult infusion center.
Here's the big boy sticking his arm out for his bracelet.
His bracelet to identify him and associate him with the chemo he will be receiving. (There's a long number on the bracelet must match the number on the drugs. Along with the name and date of birth, but the name and DOB alone are no longer sufficient.) I'm all for making sure each child gets the right meds.
While still at the adult infusion center Brian goes back and get weighed. If you glance to your right you can see a long line of recliners separated by hospital curtains. I didn't take a picture because there were several people receiving treatments today.
Then we go back out into the waiting area and out of the infusion center to the lobby of the second floor. We go around a couple of bends and through a hallway to the back entrance of the infusion center. This is the kids side. They have this secret entrance :) so the children don't have to walk through the adults getting chemo. They said it bothers both the adults and the children to see each other there for the same thing. I understand that.
Then we wait in the Infusion center room. Then the nurse comes in and takes Brian's vital, again. Remember I was tempted to be smart with my answers last time. I don't know why it just cracks me up.
Then we wait for the meds to come down from the pharmacy.
Then Brian gets accessed and receives his chemo. I have no pictures of this from today because it was terrible. Brian sat in Fred's lap and I guess the change threw Brian off because he put up quite a fight. He ended up getting a bloody nose. The entire ordeal was very draining.
After he gets his butterfly removed the kids pick out stickers and we are ready to hit the road.
Here's a picture of Brian with the infusion center ladies. The one on the top right, Janice, was the temporary nurse on the oncology floor since last October. She was there to get to know the kids so they would have a familiar face in the new infusion center. That is something we really appreciate and it helps some. The lady on the bottom right, well I can't remember her name, but we figured out that she was our original nurse in the hospital back in September 2009. (That would be when we went in for our consult and we were admitted to the hospital to get the ball rolling. Our heads were still spinning and trying to comprehend and process what was going on to our newly turned three year old baby .She was there to walk us through. Since we weren't planning on a hospital admittance, after Brian got settled and we were reassured he wasn't to have surgery that first day I went home to secure childcare for the next few days and gather Brian some special things from home. Our dear friend Julie Z. Lefils was watching the other three kids, but she had to leave to go out of town. So her sweet husband, Ricky, came watched the kids until Dabney arrived from Panama City. --fun fact...our original oncologist, Dr. Chatch, is Ricky's brother in law-- During this time Fred was with Brian at Sacred Heart. The nurse came in and had to get an IV started. She wrapped Brian in a blanket so he couldn't move and got the job done. She told Freddie that he should be thankful that Brian is a fighter rather than just laying there taking it. That stuck with Freddie. It haunted his thoughts. Remember this was the very beginning of our journey.) Well, getting chemo today we made the connection that she recognized us from two and half years ago on the oncology floor of the hospital. She also mentioned that Brian has gotten quite a bit stronger and is a fighter!!! Yes, he is.
We are thankful that Brian has ONE more treatment. We will still go to Nemours every four weeks for Brian's port to be flushed and every six weeks he will need blood work and he will periodically need scans. I don't remember the time table for that. We are praying that Brian will NOT have a re occurrence of symptoms. (Also another side note, apparently I do not understand LCH at all. Brian has bone and skin involvement and that does not equal multi system. Bone and skin are one system. That's great news.)
