Sunday, April 20, 2014


As the title of the post indicates, we had a great check up with Dr. McClain at Texas Children's. I will give a long play by play with pictures for those of you interested, but the short version is this: NO MORE CHEMO!!!! Brian's MRI revealed no changes from last year. The two spots on his brain remained the same which would indicate that there is no new LCH activity. His growth is steady which is super encouraging and means that his growth hormone was not effected when his pituitary was damaged. Brian did outstanding on the clinical assessment this year. Remember he didn't do too well last year and it made us suspicious of neurological involvement. Since Brian did so amazing this year Dr. McClain explained to us that what we saw last year was "chemo fog" or "chemo brain". Apparently the type of chemo and the length of time that Brian was on chemotherapy affected his brain. Fortunately, it was only temporary. Now, a year later, Brian is doing outstanding. We are able to stop his oral chemotherapy. Dr. McClain said that if more symptoms appear in the skin then we can call him and he will give Brian a new prescription for another six months of oral chemo. Skin involvement is not the same as internal multi system involvement. We believe that Brian's LCH is no longer active and doing damage. He may present some skin symptoms, but Dr. McClain reassured us that based on his research and several factors from Brian's particular case (1.the specific drugs Brian has taken 2. the length of time Brian was on those drugs 3. the time from DI diagnosis to now with no other internal activity 4. the MRI unchanged from last year to this, etc) that Brian should not need more infusion chemo because his disease has been managed. Obviously Dr. McClain cannot give us a 100% guarantee, but he felt pretty confident based on his research and experience with LCH. I have said it before, but I will say it again, Dr. McClain is THE MAN when it comes to LCH treatment and research. We are so thankful and feel very blessed that Brian is in his care. We are thrilled and do feel some relief that this chapter in our lives just might be coming to an end. While we will always look over Brian with a set of cautious eyes, we do feel a bit of reassurance that it is not likely that he will have active LCH in his body again.  


emily said...

oh praise the Lord! so so happy to read this awesome update on your sweet boy!! so thankful for an answer to this prayer!!!

Julie Slatcoff said...

So thankful for this wonderful news!

James Theresa Garcia said...

Praise God for all of our miracles and blessings BIG and small. will continue to keep Brian and your family in our prayers. God Bless, James & Theresa