Brian Robert & LCH: August 2013

Wednesday, August 21, 2013

Back to School 2013

Here's our crew posing for our back to school 2013 picture.

Ansley 4th grade, William 2nd grade, Brian 1st grade and Olivia Kindergarten
Both of our boys have summer birthday's and we chose to have them be the oldest in their class rather than the youngest. I polled no less than 38 mama's of older boys and THEY ALL said the exact same thing...give your boy the extra year. We've never regretted that decision. I often get asked why it matters if we homeschool. It matters because we like to keep our children in line with tradition schools if for some reason they should have to be enrolled. We have learned from our experience with Brian's illness that you do not know what the future holds.
Our kids get excited for back to school time. Yes, we homeschool, but we are a part of a community that meets once a week. If you ask our kids Tuesday's are our "real school" days.They miss our Classical Conversations community during the summer and wish we met year round. We do school year round at home. Because of life the last four years we really can't take a traditional summer break. This past year we did our school week along with Brian's chemo schedule. Three weeks of school and then one week off during the chemo week. It works for us, but I must say I get burn out and want to take a traditional summer break. So even though we school during the summer, it is very relaxed. Here you can see Brian working on some math during the summer.

Woody from Toy Story

Buzz Lightyear

Turbo

Saturday, August 10, 2013

Brian is SEVEN

HAPPY BIRTHDAY BRIAN!!! Seven years old! Brian got what he wanted for his birthday this year. Twelve days ago he got his port removed!!! YAY for no more chemo!!!!

Brian and his homemade Robin cake. (think Batman and Robin)

We didn't plan a birthday party this year because we plan on having a HUGE no more chemo party. We plan to invite just about everybody we have ever met and celebrate the end of four years of chemotherapy. That's coming, but for today...HAPPY SEVENTH BIRTHDAY BRIAN ROBERT!!

Friday, August 2, 2013

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.

One last picture of Brian with his second port. Implanted September 24, 2010, removed July 29, 2013

We are praying that this is the end of surgeries and hospitals for our Brian.

Being wheeled away from us...

In recovery and giving a faint smile at being told he no longer has a port in his chest.

Here's Brian a week or so after surgery. For some reason his scar is twice the size of his previous three port related surgeries.

The scar.

Brian, BB or "B-ber"

Brian is our seven year old boy. He is the third of four children, all born in just four years. Sept 2009 Brian was diagnosed with Langerhans Cell Histiocytosis. He spent seven months on Chemo and steriods. In April 2010 we had his port removed and celebrated "no more chemo!". His treatment from May forward was oral medicine on the weekends and scans/bloodwork every three months. Brian's firt set of scans/follow up with the oncologist in July were wonderful. We didn't quite make it to his second set of scans three months later in October. In late July/ early August we started noticing suspicious bumps on his scalp and a rash on his private area. On Sept 15, 2010 we took Brian to his oncologist. That appointment revealed the possibilty of more chemo. September 21 we had a biopsy that two days later revealed that Brian's LCH was back. We immediately had surgery to implant a port and in Oct 2010 started a second journey through chemotherapy and steroids for our little Brian. In March 2011 Brian's chemo drugs were changed around as his new protocal was not working. Brian was still presenting symptoms. We went back to the original combination of drugs but this time instead of being on them six months the plan was for twelve months. Brian completed his second round of chemo March 8, 2012. Even though Brian was completing treatment, we started noticing symptoms of Diabetes Insipidus in March 2012. He was diagnosed with D.I. March 22, 2012. His new diagnosis was considered a relapse for his LCH. Brian's third round (or fourth protocol depending on how you look at it) of chemo and a totally different protocol began April 2012. He had chemo five days in a row followed by a three week break for 12 months. He completed that protocol the first week of April 2013. In July of 2013 Brian had his port removed and we were over the moon excited about NO MORE CHEMO. In October of 2013 Brian had a recurrence of symptoms. He took six months of oral chemo. In April of 2014 he had another MRI. It was decided that Brian could stop treatment. By August-September 2014 he started showing symptoms again. October 2014 we are back in Houston to see what the next step will be for treatment of Brian's LCH.

Brian Robert & LCH