Brian Robert & LCH: The port is OUT!!!!

Monday Brian had his port removed. He is doing well and we are shifting gears to post chemo schedule. He still meets with his oncologist monthly for a few more months. Then we will move to every six weeks, then every other month, then every three months, then every six months. In five years if everything continues to go well Brian will be considered in remission.
One thing that was not pleasant at this past appointment was discussing all the things to look for in Brian as we move forward. Secondary Leukemia and Wilms Tumors are possibilities based on the drugs he has received and the length of time he was on chemo. He has a road map for the next five years, much like he did on treatment. But, instead of what drugs he is to receive when and what dose, this road map says what testing he is to receive as we monitor him for chemo side effects.

We are celebrating that he is done with chemo and his port has been removed but we are still praying constantly and trusting in the Lord for Brian's future.

I ~~will upload some pictures from Monday's surgery day and a few from Brian's appointment with Dr. Schwartz on Wednesday~~. (UPDATE: pictures below) For right now, I want to share this picture. Brian drew it about six months ago and I meant to post it but never got around to it. It's a tear jerker. Brian was just doodling one day while I was working on some Math with William or Ansley. Here's his picture:

His little mind was thinking about the hospital and being in the ER. He was remembering a terrible night when he was super upset and we actually left the ER AMA (against medical advice). Every so often he will climb into my lap and say that he is scared of chemo. It makes me sad to see chemo in his doodling but, it's a good way for him to express what he is thinking and feeling and for us to be able to communicate and reassure him. FYI- if you aren't familiar with this picture it is the pain scale hanging on the wall in hospitals. It actually goes from one to ten. The night we left the ER Brian was crying and in pain (the nurse didn't know how to access a port but attempted...twice!) Anyway, I made them leave the room and as I was consoling Brian, he saw the sign and sadly cried, "Mommy, I'm a ten."

Last week I had a slight freak out and rushed Brian to the pediatrician. He hasn't seen her for an appointment about himself in almost four years. But I wasn't getting answers from the oncologist and I just wanted more eyes to look at Brian and reassure me that what was going on was in fact minor. I didn't want to get his port removed if he was going to need it a few months later. Brian has had what appears to be eczema on his face for seven or eight months. The steroid cream that Dr. Brown gave us back in January bleached Brian's face and didn't really heal the break out. I refused to use it after two months of it not working. Brian also said it burned really badly. I wanted our wonderful pediatrician to look at it and confirm that it was in fact eczema and not LCH. She said lots of people are experiencing eczema issues right now and to try a couple of over the counter things we hadn't tried first. She also gave me a prescription to try if the over the counter stuff didn't work. She totally understood my stress given the last four years of our lives. I LOVE our pediatrician. So, we moved forward with the port removal.

Here are some pictures about Brian's port removal:

For our Sunday night small group at church the kids were asked to write a prayer request or praise. This was Brian's request the night before his port removal surgery. We pray that it is out and he doesn't ever need another port and more chemo.

Monday morning, Brian was a little nervous. There was some major miscommunication and unnecessary drama, but long story short, Brian was NOT on the books for port removal surgery. The nurse practitioner with peds surgery was awesome and she sweetly called the surgeon to squeeze Brian in at the end of the day. It was a LONG day and poor Brian had lots of time to be anxious.