Sunday, April 20, 2014

The long and picture filled version

Wednesday morning we woke up and went to Brian's regular Endocrinology appointment. Everything went well and all levels are good. (For the record when I say that levels or tests look good or are excellent it is always with the understood "for what Brian has going on". He has not had a "normal- what every other kid would look like" test result since he was two.) We left from the hospital here and headed straight to Houston, TX. The first night of our trip we stayed in Fred's parent's camper at an RV park in Houston. They live in NM, but went to Houston a few days before we did and helped out with the other kids on this trip. The older three where excited to swim in the pool before dinner. Miss Olivia was saddened that she couldn't participate and was reminded how much she hates her cast.

looking forward to swimming at Grandpa and Grandma's RV park 

sitting on the bottom of the hot tub
Thursday morning I woke Brian up at 5:30 AM and fed him breakfast as he was NPO from 6:00 AM onward. He went back to sleep after eating and everyone got up and we got our day moving around 6:45 AM. After a morning of playing in the camper and the exercise room at the RV park, we headed to Texas Children's. Brian was checked in for his MRI with sedation at 11:45 AM. We were called back fairly quickly, but just to sit for hours. We believe that someone was bumped ahead of Brian. Around 2:00 ish we were being moved to a different floor where they would actually do the MRI. That meant the waiting room near recovery for the MRI was in a different building then where we had started our day. Fred went in search of his parents and our other three kids in the cafeteria where they where eating lunch. They didn't know about the change and where they were currently located was closer to where we would end up. Fred wanted to catch them before they walked back to the other building where we had started our morning. He grabbed some lunch for himself and as he was doing that I called him to rush them along saying that things were happening quicker than we had thought. Fred bagged up his lunch and quick grabbed something for me and headed to the MRI waiting area. They anticipated that I would walk out within minutes saying Brian's procedure had started. It was well over an hour an a half later. Poor Brian fought getting his IV and kicked and cried, resisting the entire process. It took three of us to hold him down. Then every five to ten minutes someone would come in like "this is it" only to have something delay the process. (Apparently they draw the meds for each specific patient earlier in the day. When it was Brian's turn, one of the delays was that his propofol had expired by 45 minutes so a new syringe had to be drawn.) Brian was so worked up he fell asleep in my lap. Finally everything fell into place and he was put to sleep with propofol and I went out to the waiting room with the rest of my family only to discover that Olivia had come down with a fever and wasn't feeling well. We decided that Fred and his Dad should head over to our hotel and get checked in so Olivia could rest. About 20 minutes after they left I was called back to recovery with Brian. He was Chatty Cathy and asking to see the pictures of his brain. The nurse was super sweet and asked if she could pull them up and show Brian. She was allowed to and he loved seeing his "creepy" brain.

Brian giving a robot an MRI or PET scan in the waiting room

getting checked in

really scared and not looking forward to what's about to happen

So worked up that he fell asleep in my lap.

Olivia not feeling well as we wait for Brian's MRI to be completed.

Brian's skin is so sensitive. This is from the EKG.(scar on B's right side of chest is from port removal)

 We got to the hotel not too long after Fred checked us in. We got our stuff set down and Fred, his parents and Ansley left to get dinner to bring back as it was past 5:30 PM by this point. While Olivia, Brian, William and I were resting we got a knock on the door. Room service delivered some treats for Olivia with a sweet card saying they hoped she felt better soon. (We stay at the Marriott because it is across the street from Texas Children's. It is SO convenient. We get a medical discount rate and we assume they saw Olivia's cast + she obviously didn't feel well at check in and put that all together assuming we were there for her. She got something special from the staff each day we were there.) While the man was in setting down the complementary tray he let me know that if we are interested in room service any time during our stay that they have several options and a 20% fee is charged, but feel free to tip above that. Brian looks at the man and asks, "Do you have cheese pizza?" The man replied with a smile and a "yes" while looking my way. I was so tired and I knew there wasn't a pizza place within walking distance and that Fred was most likely coming back with Chinese food that Brian doesn't really eat anyway. I said sure, get the boy his pizza inwardly thinking that Fred's going kill me when he hears that I just let Brian order a pizza that is going to cost us $50! It didn't cost that much, but it made Fred and I chuckled that our seven year old now likes to say that he prefers the Marriott and likes room service.
   After dinner Fred's parents went back to their RV park and we crashed for the night. We tried to fall asleep instantly but Brian was mister giggles and said he couldn't quiet down because, and I quote, "this is my time to giggle and be silly since I didn't get to the rest of the day!"
   Friday morning we headed straight over to Texas Children's and Brian's appointment with Dr. McClain. The movie Frozen was playing in the waiting room and a child life specialist was doing an Easter craft with the kids. We had a wonderful appointment with Dr. McClain. I still love the man and couldn't find a single thing to complain about. He takes time to listen to us and Brian and never acts rushed or distracted. Brian was telling Dr. McClain about the pictures of his brain and Dr. McClain offered to pull them up again so Brian could take another look. Brian really appreciated it. He likes looking at his insides.
making an Easter craft

the cheerful waiting room

Dr. McClain showing Brian his MRI of the brain.

 I will finish my "journal" of our trip later, but for now here are the pictures...

checking out the PET scan machine

just chillin'

getting scared and not looking forward to propofol

Wyneth, our wonderful recovery nurse two days in a row.

Happy to be throwing away the oral chemo pills!!

Happy Easter ~ HE is Risen!


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.  

Saturday, April 5, 2014


Well, I am absolutely the world's worst blogger, but here is an update for the three of you that still check the blog looking for updates about our sweet Brian.

   We have been keeping this blog for several years now. It started out when Brian had his first recurrence in 2010 and we were so devastated that we could not physically or emotionally tell everyone that cared and loved our family "the update".  I keep a family blog that is our digital scrapbook and photo album. It is locked and private. We didn't want to open it up for just anyone surfing the Internet. We didn't want some weird-o's having access to seeing our babies sing and dance in their diapers or taking a bath. But we wanted a way that we could inform all of our loved ones what was going on without having to retell the news sixty-five times. It wasn't possible to respond to every inquiring loved one. So, we started this blog knowing we would be more discerning in what we posted.  Maybe it would even help some other family searching about Langerhans Cell Histiocytosis... 

  It has been therapeutic to go back and read posts from the past. God has brought us through so much. We are so blessed. For those of you that follow this blog and get posts emailed to, sorry if you got some links and now they are deleted. I accidentally posted our family pictures and stories to the wrong blog. I think I have it all corrected now.  :)

   These lasts few months have been silent on the blog, but busy in real life. Brian has done fantastic on the oral chemo. He swallows six chemo pills every Thursday. Those six pills are in addition to his five DDAVP that he swallows three times a day. He's a champ. I remember my Dad having to wake me up at 3 AM and put Malaria Pills in my mouth and lift my chin, rubbing my throat like a dog to get me to swallow it. (in preparation to go to Africa on a missions trip) I was eighteen. Brian is seven and can swallow eight pills at one time. He's a champ! He has minimal side effects and his symptoms seem to be under control.

  In October when Brian started oral chemo we went to the hospital every two weeks for blood work. In January we were allowed to move to once a month because his counts and liver function were looking so good. So, for the last three months we have been absolutely amazed at how "normal" we have felt. It has been FABULOUS!!!!!

   But in true Schreiber fashion we still had some medical drama sprinkled in there. But NOT with Brian. With William and Olivia. :)

   We had planned to spend Christmas in New Mexico with Fred's family this past year. Because of having four babies in four years, moving eight times in seven years, Fred's back surgeries, Brian's port and chemo, etc, etc. we have only traveled to New Mexico like maybe seven times in the last ten years. We were all pumped and excited to play at our New Mexico Grandparents house and see our Denver cousins again.(They had just been here to visit before school started back) THIS was the year we were feeling "normal" and out of the woods as far as medical drama is concerned. We were excited!! Three days before we were to fly out to New Mexico William broke his arm. Remember those special kitties. Well, we were at the friend's house that adopted those kitties. William was outside with the boys when one of those kitties got out of the fence. William was concerned that the cat would run away and die, so he climbed the fence to go after the kitten. His foot got stuck and he somehow fell, breaking his left arm. However, he didn't stop. He continued to rescue the cat. He shoved it back through the slats of the fence and then climbed back over the wooden six foot fence with a broken arm. He is made of steel, I tell you!!! But the trauma of seeing him come in all white and then the drama of seeing his arm just dangling and crooked...It was a shocker!! I think I will post a picture of it. It was traumatic for all of us! Well, God also encouraged me that day because our sweet friends live 37 minutes away from the hospital. The entire way to the ER I was praising God for where we live. I cannot imagine driving that with Brian the last four years. While I sometimes hate that our house is old and still needs so many things done to it, I am SOOO thankful for its location. It has truly been a blessing. William was amazing through the entire ordeal. He is AMAZING. We ended up canceling our New Mexico trip and William had surgery and spent a couple days and one night at the hospital. He wore a cast for six weeks and still has pins in his radius and ulna. We hope he can keep them in a couple more months as his bones heal. He will have surgery to remove the pins in June if not earlier. His body is starting to not like that they are in there.
   Well, as if that wasn't enough, two weeks ago we were headed to church and Olivia fell out of Fred's truck and broke her arm. We went straight to the ER and got right in. There are perks to being recognized in the ER. But, ummm, do we want to be recognized in the ER?!! Anyway, the ER x-rayed her, put a splint on her and sent us home. The ER doctor said it wasn't a bad break and didn't need to be set. When we went to her appointment with Orthopedics the next day, they asked if her arm was set in the ER. We told them "NO, we were told it didn't need it." Well, it did and they did a reduction (re-aligning the bones) in the office with NO anesthesia or pain meds. Olivia screamed and wailed and cried. I cried. The PA teared up. Fred got angry that they did this to his baby girl. It was horrible. Horrible. Horrible!! They put a splint back on her and sent us home for a week so the swelling could go down before they cast her. She got her cast on last Monday (3/31) and will wear it for four weeks. Then she will get a below the elbow cast and wear it for two weeks.

 We just like to give all of our money to Sacred Heart Hospital and Nemours. We should have a wing named after us. Or at least a bench dedicated to us.   :)

  OK, in all seriousness we would really appreciate your prayers over the next few weeks. We travel back to Texas in ten days for Brian's PET scan, MRI and an appointment with Dr. McClain. We are PRAYING that he can either (1)be all done with treatment or (2)if he still needs treatment that it can still be oral chemo. We will keep you posted. Thanks for hanging in there with us.

All four, growing too fast.

on the hunt for our family Christmas tree

William's broken arm on December 17, 2013.

He was sedated to have it set in the ER. We went home for 36 hours then came back for surgery on the 19th.
being wheeled off for surgery

after surgery

sweet William

spending some time in the hospital
William's new hardware
When Brian got restless and didn't want to be in the hospital we went for a walk to find his ceiling tile. Remember he painted it during one of his week long stays last summer. Well, we found it!

 When it got to be too much for Brian he went and hid in the closet with the iPad. He DID NOT like seeing his brother in the hospital. 
sweet Brian hiding in the closet with the iPad

Once William was released from the hospital we had a week at home before he was to get his cast. William had to keep his arm elevated and keep those fingers moving. When sleeping William had to have his arm hanging in the air. I thought of putting one of those command hook stips on the wall, but Fred was not going have William's arm fall in the middle of the night if that hook fell off the wall. He is such a good Daddy. Fred put a huge hook in the wall to ensure that William's arm was NOT going to fall.
Apparently we didn't get a picture of this with a camera. This picture is of a screen shot from Instagram.

Two days after Christmas William got his cast put on.

Six weeks later William got his cast off.

Five weeks or so after William got his cast off, Olivia took her turn with the ER and Orthopedics.

In the ER after X rays after getting her arm wrapped up. 3/23/14

the X rays of Olivia's arm
Our family in the ER with Olivia's broken arm. 3/23/14

getting her blood pressure taken before ortho appointment 3/24

taking the splint off

Getting ready for the reduction. I set my phone aside. There were no taking pictures of that horrible ordeal. 

Getting X-rays after the reduction to make sure it worked. You could tell Livs had been crying.

 A week later we headed back for her cast. She wasn't thrilled to be there. They had move her bones a bit more because they weren't totally lined up anymore. It wasn't near as bad as the week before but it was still really sad to watch her go through it.