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 We believe that Brian's LCH is no longer active and doing damage.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

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.

Update

The PET scan was never sent to Texas Children's for Dr. McClain to view. Fred went down to Sacred Heart and got it on CD to send it Fed Ex to Texas.
  After Dr. McClain and the Histio review board looked at the images we heard back on the findings. Apparently they were not able to merge the images to view things like you are typically able to do. Each individual image appeared OK, but not being able to merge made it difficult to really diagnosis anything from this particular PET scan.
   OK, all that means nothing to me, but Dr. McClain said we could redo the PET scan in Texas, but there was no sense of urgency so we could wait until we are there in April. We are taking that as good news.

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.

Please Pray

Please pray for Brian as his counts are low. His ANC is 520, so his chemo that was scheduled for this week has been pushed back to next week. Please pray that Brian doesn't catch any of the yucky illnesses that have been going around. Also pray that his counts improve so he can receive treatment next week.
  Still no word on our Texas trip...we will let you know. Thanks for praying.

Update Nov. 2 2012

Thank you to everyone that prayed for us this week. It was a rough one!!! Not only was it a chemo week, but Brian had his MRI on Wednesday. They always do that with sedation, so it's kind of a big deal. We also had some home problems that included plumbing issues backed up into our shower, bathtub, and bathroom floors and some termites. It got ugly. We ended up calling roto rooter and using a lot of bleach. :-) That, of course, happened on Tuesday, Brian's day two of treatment. Ya know, the dreaded day that Brian always gets sick. Ahh...glad the week is over. (well, the termite drama started two weeks before.)

 

Here's Brian's next couple of months of chemo calendars. I didn't circle the week in December b/c he is technically suppose to receive chemo the week of Christmas. Brian will not, but we aren't sure if it will be the week before or the week after.

 

 

 

Here are some pictures from the week. Friday (10/26) we did bloodwork. The Saturday before chemo we carved our pumpkins as a family. It's always a big deal in our house because Fred is kinda the world's best pumpkin carver. The kids always get excited to choose what Daddy will carve into their pumpkin. I believe Brian was attempting to pick the most complicated thing he could. He finally settled on Darth Vadar and he was happy with it.

Here is a picture of the pumpkins in the dark. Super cool!

 
Monday we went to school, then headed to Nemours for Brian's doctor appointment and chemo. I know I had mentioned that Brian wasn't going to participate in CC this year, but about week 6 or 7 he decided that he did want to be in a class. Fortunately there was room for Brian to join Olivia's class.

Sweet Brian doing his presentation on the Lego Company. Oh, how he LOVES Legos!

    Monday we found out that Brian's counts from Friday were at 620. The doctor wanted to redo labs to see where Brian's counts were. They were at 650 so we went ahead with chemo. The kids were tired after our morning at school so we all just watched a TV show while Brian got his chemo. Olivia always has a smile! We ended up being there for over three hours because of the extra lab work and the pharmacy was behind or not informed we were there. Not sure what was going on.

 

Tuesday was HORRIBLE. In the midst of all the mess, a sweet family from our CC group came over and delivered a surprise for the kids. We didn't believe we were going to get to do anything for Halloween. So, the Duncan family brought over enough candy for the entire neighborhood!! It was so thoughtful and generous and sweet. Very creative too. I totally teared up b/c I was on the edge emotionally. They delivered the surprise as the Roto Rooter man was doing his thing. When he knocked on the door to tell me what was up and to collect payment, I totally said goodbye to the Duncan's without realizing I was basically throwing them out of the house. When it dawned on me (after they left) I was so upset and embarrassed. Tuesday was not a good day.

 

 

 

Wednesday was an early morning as Brian was scheduled for his MRI at 7:00 AM. Fred dropped the other three off at a friends house while Brian and I headed to the hospital. I had to call Fred for back up because the lady checking me in at MRI was giving me some problems. They had the wrong doctor listed as the ordering physician and I wanted them to correct it. I am talking totally wrong. Not a different doctor in the practice, but a combination of Brian's name and Brian's doctors name. I told her that there must have been a mistake and would she please correct it. She wouldn't. So, I scratched out the name and wrote the correct one in. The lady was frustrated with me. She took my papers away and printed off another copy with the incorrect name still on it. I told her that I wouldn't sign it until she corrected it. She was firm that it was right and I was mistaken. She was sure that I just didn't know all the pediatric hem/onc doctors. I firmly reassured her that we have been playing this game for three years and, yes, we do know all the doctors. Brian Schwartz may be a real doctor, but he is not our real doctor and he is not in pediatric hem/onc at Nemours. Fred was frustrated and told me to tell them that it is wrong and we don't care if the name Brian Schwartz is a real doctor or a mistake of Brian's name and his doctors name being combined. But, what we do care about is please correct the error so that our doctor gets the results of the imaging. We dont' want to have to track it down b/c the wrong doctor got sent the results or delay the process of finding out the results ourselves.

 

Unnecessary drama.  

 

The anesthesiologist that was taking care of Brian, Dr. Cutrone, is a tall Italian man. He's hard to forget. This is the third MRI he has done with Brian. He remembered us and was very friendly to Brian. Before taking Brian back he sat down next to Brian and drew something on his hand. Then he asked Brian to guess. It was super sweet. I took a great picture of Dr. Cutrone holding Brian's hand and drawing on it, but for some reason my phone didn't save it. I was pretty bummed. Here's Brian's hand.

 

 

 

They gave Brian some versed, then immediately took him back. They didn't really give the Versed a chance to take effect, so Brian remembers and was sad that we were separated. However, you can tell in the picture that he was a little drugged.

 

 and pushing him on back...

 

After he woke up we stayed in recovery for thirty minutes. Then we headed over to Nemours for chemo. Brian was still a little out of it. Since it was Halloween they handed out treats. Apparently some of the local elementary schools put together some gift baskets. It was really sweet.

 

Brian was too out of it to care about his gift basket of candy.

I thought this one was pretty creative.  

 
Thursday we were the first chemo appointment of the day so we had to wait a couple of hours again. Same problem on Friday. It has been taking several hours to get the chemo upstairs so we end up waiting for two and three hours. We were told on Friday that they are coming up with a new system so that chemo is ready for each patient as they arrive, rather than waiting on three or four patients and making the chemo in bulk. I don't understand any of this as all the kids are on different meds and doses based on their weight, illness, etc. So, I have no clue what is really going on. I just know that Friday was not a good day. We had all four kids with us and we were all zapped. It had been a long, bad week. Brian was really upset. He fought a whole bunch and accidentally kicked his nurse as she was trying to take the port needle out. We are very thankful the week is over and look forward to having three weeks of a break.
  Thank you for your prayers. We know that God using you all to lift us up and encourage us. God reminds us of His presence through each of you loving on us and caring for us. We are tired and so sick of doing this. Three years has really worn on us. Especially Brian. It just tears our parents hearts to see his spirit down and broken when he knows chemo is coming.