NO MORE CHEMO!! ~Take 3

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 We believe that Brian's LCH is no longer active and doing damage.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.  

Update and Scans

Brian had X-rays yesterday to take a peek at his bones. If all is clear then he will be approved to have his port removed. We are obviously excited, but ask for continued prayers. Brian has not received chemotherapy treatment since the first week of April (2013). We believe that he is doing well. He looks great and has tons of little boy energy. That's something he hasn't had much of the last four years! So far, no new LCH symptoms. We we told by Dr. McClain that it would be a less than 20% chance of a recurrence. If LCH is active and going to do more damage it would be in the bone. 

    Brian's diabetes insipidus is being manage with several pills multiple times a day, and he is champ at swallowing his DDAVP. 

    In April of 2010 Brian had his first port removed after six and a half months of chemo. His first couple sets of scans and bloodwork looked good before he started showing symptoms again. That is when in September of 2010 he had his second, and current, port implanted. While we are thrilled to get it out of him, we remember(and so does he) Brian asking,"just two ports, right, Mommy and Daddy?" So getting his port removed is coupled with both excitement and some anxiety. 

  Please keep our family in your prayers. It means so much to know that we have an army of believers supporting us and standing with us! 

 Love, the Schreibers

Here is a cute picture of the kids.

And some pictures of Brian's X-rays

When he's nervous he starts off wild and disobedient...

then he moves to scared and clingly. 

 

They are always so great to let Brian peek at his bones.

 His cute little hands

his sweet little feet

In this one you can see his port line

The hallway from the waiting room to the imaging room has art from students at local schools. Brian likes these monsters the best. He wanted pictures with his favorites. We are hoping and praying that our trips down this hall are dwindling down.

Chemo Calendar

This is Brian's second September calendar. The hurricane kinda messed up his schedule. Remember I said he would be having chemo next week? Well, scratch that. He will have it the week of October the first. If you remember we even asked why they were scheduling Brian with a two week break instead of the usual three. Anywho...we got a call that somehow the scheduling was overlooked and he was pushed back to the week of October 1st. So, here are Brian's chemo calendars for Sept. and October.

 

Good To Know

There are posters on the doors of the rooms in the clinic that explain neutrophils. I thought it would be cool to add to the blog because it probably explains better than I could. When I mentioned I should take a picture for the blog, Brian got silly and stood in front of the poster.