Saturday, April 5, 2014

Update

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.

3 comments:

nancygrayce said...

We are so glad to see an update! You are a warrior family!

James Theresa Garcia said...

Thanks for the update. Our church continues to pray for Brian and your family. God Bless all of you.

Christina Gordon said...

Thanks for the update! I continue to check updates and pray for your family.

I recognize the Ortho PA....she came up to see TJ a few times when he spent last week at Sacred Heart.