Our Trip in Pictures

Our hotel was across the street from Texas Children's hospital. It was SOOO nice to be able to walk over to hospital. We sat outside of the Starbucks by our hotel and ate breakfast. The kids enjoyed the busy downtown Houston street.  

 

Brian's first appointment was meeting with a couple of dermatologists to look over his skin. The waiting area had a mirrored room the kids enjoyed.

After meeting with the dermatology we went back out to the waiting room to wait for Brian to be called back for his biopsy. He did so amazing through the entire biopsy that the nurse handed Brian two fistfuls of treats and toys. He was quite proud. He didn't even realize he had stitches in his head.

The eyeball bouncy ball was a favorite.

   The appointment with Dr. McClain was next. Brian gave enough blood to drain his body. Obviously, not really, but it was a lot. He's a trooper!

When Dr. McClain came in the room he asked Brian several questions then decided we needed to go straight down to radiology and get some X-rays. There were some technical issues with the computer system and perhaps they had changed some codes for ordering specific images (without telling the doctors) so we sat in the room for quite some time watching Dr. McClain try to figure out how to order what he wanted to be done. Fred and I chuckled because Dr. McClain ended up writing what he wanted on a blank sheet of paper and signed it. He included his pager number and told us to head downstairs. In the meantime, Brian was getting restless so I gave him my phone. He took several pictures.

The view from the 14th floor.

We got down to radiology and changed Brian into his gown. There was a waiting room that looked like a dressing room in a department store. Brian was goofing off and managed to run straight into a wall and bust his lip. He was upset and just wanted to get out of there. Since the day was almost over (by this time it was well after 4) and most people had cleared out, I let Brian come peek at his siblings through the glass. They were in the main lobby waiting room for the entire eighth floor.  Right about that time it was Brian's turn to go back for imaging.

Again, Brian did an impressive job. We were in and out and headed back upstairs to see Dr. McClain by 5:15-5:30 PM. By this time all the office staff was out of the office. Fred flagged someone down and told them we were told to come back upstairs and see Dr. McClain.  We waited in the waiting room for a few moments and the kids were totally restless by this point. I believe Brian began milking the Winnie the Pooh cow. You can tell by the decorations that we were in Texas.  :-)

Dr. McClain came out and said that the report from the X-rays were not in yet (probably because it was after hours) but that from what he could see it looked good. Fred and I were a little confused and said, "Well, that's great, but what's on his head...we thought it was LCH again? What's going on?"
    Dr. McClain then casually stated, "Oh, yeah. I'm 100% confident that it's LCH. He'll be on chemo for six months for that...I was just talking about the bone!! As far as I can tell LCH is not in the bone right now."
     Picking up on our confusion and shock, Dr. McClain took us back into a room and talked with us for a little bit longer. He answered our questions, but we were so stunned that we didn't think of some of our questions until after things had processed later that evening. It was about that time that Brian's head was no longer numb and he started complaining about it itching. He got really clingy and fussy. We took the kids to the pool for a bit, but Brian couldn't get his head wet. The evening was kinda stressful as we juggled talking through everything, trying to accommodate Brian, and letting the other three burn off their pent up energy. I (Carrie) also started to feel poorly and notice a familiar rash I had earlier in the year. Yes, welcome back Shingles. The shingles virus lays dormant in your body after you've had chicken pox. I laugh because the doctor told me that it can be "brought back up" by stress.Yes, we've been VERY stressed the last 12 days. (I started the medicine for shingles last night and it makes me sick and dizzy. Hopefully I will be over shingles soon.) Anyway, back to Brian,  Dr. McClain told us that Brian should have a PET scan soon and in April '14 a new MRI. It's really too soon to do another MRI and notice the LCH involvement in the Central Nervous System if it's there. He really needs a good year in between the two images as things change so slowly. 
   Brian will begin his new oral chemo this week. He will need blood work every two weeks to check counts and liver function. While we are SOOO thankful that Brian doesn't need a new port and can take his six chemo pills one day a week for six months from home, we are ready to identify where LCH is active in his body and deal with it once and for all!!! We have suspicions that it is in the Central Nervous System. April of 2014 will be a telling time as we will be able to compare the two MRI images.
Please keep Brian in your prayers as he begins his next chemo phase. We will keep you updated.

More Chemo for Brian

We are in Houston at Texas Children's Hospital. Brian had an appointment at 1 today to biopsy his scalp. Things were running a little behind schedule and we didn't get up to the 14th floor to see Dr. McClain until a little after 3. After talking with him for a little bit he sent us straight down to radiology to get some scans. When the x-rays were complete we headed back up to the 14th floor to talk to Dr. McClain again. At this point it was after 5:00 and the office staff had gone home. Dr. McClain talked with us more and we discovered Brian will need six more months of chemo. We are VERY thankful that he is able to do this specific chemo drug orally rather than an infusion. That means no port which is an answer to prayer, but Brian is going to require chemo that is known to lower counts. I will update more thoroughly and add pictures when we get home, but I know several of you are anxiously waiting for an update. Thank you for your faithful prayers.

Prayers Appreciated

    Several weeks ago we found some bumps on Brian's scalp. Immediately we called the oncologist and asked to be seen. His nurse let us know that the he said we didn't need to come in, just to watch the scalp and he would see Brian at next month's appointment. Fast forward a couple of weeks and we take Brian to a well child appointment with our pediatrician, Dr. Foland. We scheduled it a couple of months ago when we decided that since Brian was done with chemo and we were moving into a more normal time period that it was time to get him back established with her. At the beginning of Brian's diagnosis she had sweetly said that if it helps Brian to have one less doctors appointment then don't bother bringing him in for well child checks. Other than the appointment back in July for Brian's eczema right before he had his port removed, he hadn't been to the Pediatrician for an appointment about him in four years. Last Wednesday at the well child appointment she noticed the bumps and was obviously as concerned as we were. She called the dermatologist that did Brian's biopsies both four and three years ago and set up an appointment to get another biopsy. We were devastated because we already knew what all this meant.
   This past Monday we took Brian to see Dr. Watson for his biopsy. When asked about Brian we told her about his eczema that wasn't really going away. She could see it and knew right away that the scalp and the "eczema" were both Histio. Dr. Watson didn't even biopsy the scalp. She was so positive it is LCH again. Her recommendation, and our desire, is to go straight to Texas Children's and see Dr. McClain. We have an appointment in Texas for next Monday, but should hear back today if we need to plan to stay for multiple days to run more tests and scans. We will keep you updated as we know more. Right now please pray specifically that maybe, just maybe we can treat Brian with something other than chemo. He is so sad at the thought of another port and more chemo. It's been a very long four years.  

Last Wednesday when the pediatrician confirmed what we had suspected, Fred and I were very upset. That evening at our church prayer and praise every song was speaking to our hurting hearts. I talked with a sweet friend, who is also dealing with her own illness and possible additional chemo, about the song All Who Are Thirsty. The chorus Come, Lord Jesus, come is the prayer of our heart. We have a longing and desire for our Savior that deepens with each step we take in this life. Psalm 42 is on our hearts. We do not question His love for us or His faithfulness to us, if anything it is more confirmed in our life. But our hearts still hurt for Brian.

Some of the songs we sang: It is Well With My Soul, All Who Are Thirsty, He Knows My Name

    

 Majority of our church was in tears last Wednesday evening. We have a lot of illness and pain right now. Not just in our family, but there are several families in our church with heavy burdens right now. The tears shed with our family encourage us as we know we are not alone. God reminds us of HIS presence through the body of Christ.

Our sweet small group on Sunday evening spent time in prayer for all the things going on in the lives of our church family. The children were asked to write a prayer or a praise. Brian drew this picture:

 It's a picture of himself on a hospital bed with a doctor beside him holding his port. He said it's a praise that the doctor took his port out and he doesn't want another one. As you can imagine several of us were in tears. It's been a difficult few days and we imagine the coming days will also be a challenge. We plan on having EVERYTHING that requires the eyes of the doctor to be done in Texas. We want Dr. McClain to be the one looking at Brian and making decisions. We know how hard and how costly this experience was here in Pensacola with the hospital down the road. We get overwhelmed at the thought of going through all of it again and in Texas. One day at a time. HIS mercies are new every morning.   We appreciate the prayers.

He Has An Extra Curricular Activity!!!

Many of you may remember me making mention of the extra curricular activities in our house. The conversation went something like this, "Ansley has dance and piano, William has guitar and piano, Olivia has dance and piano...and I have chemo!!"
   Yes, Brian would happily shout that he "gets to do chemo". He just hasn't had the energy or desire to do anything. Legos and video games have been his thing. Well, getting that port out has been a life changer for Brian. He is THRILLED to run around and be rough and tumble with his friends.
    On Tuesday evenings Olivia has a dance class from 4-5. At the end of the class the dance teacher instructed the students staying for the tumbling class to sit against the wall. Olivia sweetly asked if she could stay because she has wanted to take gymnastics for quite some time. We haven't looked into it too seriously because we have not been able to add one more thing to our schedule. I am very protective of our time and do not over schedule us outside of our home. It's something I have had to do because of Brian's illness, but now I treasure it. Anyway, I got permission for Olivia to try the class out. While standing outside watching through the window I noticed a little boy in the class. William and Brian expressed interest and the one little boy's mom overheard. She looked at me and said, "Oh please do let them go in. My son would love to have more little boys in the class." I asked for permission to send my boys in. It was an instant hit. The teacher is a male, coach Dale. Our boys LOVED every second of the class, so much so that they have renamed our Tuesdays. Tuesday is our Classical Conversations day and it has been the highlight of our week for years. Apparently it has moved to the back burner because our three tumbling kiddos now refer to Tuesday's as our Tumbling Tuesdays.

  The class will not be this large. Apparently several parents heard "try it out" and sent their kids in there. We are thankful that our three got to slide on in and be a part of this class. We LOVE In His Steps. It's not just a studio were they learn some music, dance and tumbling, but it is a ministry. (We do all of our extra curricular activities at IHS.) The teachers are pouring their hearts and their love for the Lord into our children. We love that our boys have another positive male role model. Coach Dale is also a pastor. :)
  So, hooray! for Brian being able to say he does something other than chemo!!!

Back to School 2013

Here's our crew posing for our back to school 2013 picture.

Ansley 4th grade, William 2nd grade, Brian 1st grade and Olivia Kindergarten
Both of our boys have summer birthday's and we chose to have them be the oldest in their class rather than the youngest. I polled no less than 38 mama's of older boys and THEY ALL said the exact same thing...give your boy the extra year. We've never regretted that decision. I often get asked why it matters if we homeschool. It matters because we like to keep our children in line with tradition schools if for some reason they should have to be enrolled. We have learned from our experience with Brian's illness that you do not know what the future holds. 
  Our kids get excited for back to school time. Yes, we homeschool, but we are a part of a community that meets once a week. If you ask our kids Tuesday's are our "real school" days.They miss our Classical Conversations community during the summer and wish we met year round. We do school year round at home. Because of life the last four years we really can't take a traditional summer break. This past year we did our school week along with Brian's chemo schedule. Three weeks of school and then one week off during the chemo week. It works for us, but I must say I get burn out and want to take a traditional summer break. So even though we school during the summer, it is very relaxed. Here you can see Brian working on some math during the summer.

Woody from Toy Story

Buzz Lightyear

Turbo

Best Buddies

William and Brian are best buddies.

Brian is SEVEN

HAPPY BIRTHDAY BRIAN!!! Seven years old! Brian got what he wanted for his birthday this year. Twelve days ago he got his port removed!!! YAY for no more chemo!!!!

 

Brian and his homemade Robin cake. (think Batman and Robin)

 We didn't plan a birthday party this year because we plan on having a HUGE no more chemo party. We plan to invite just about everybody we have ever met and celebrate the end of four years of chemotherapy. That's coming, but for today...HAPPY SEVENTH BIRTHDAY BRIAN ROBERT!!

The port is OUT!!!!

Monday Brian had his port removed. He is doing well and we are shifting gears to post chemo schedule. He still meets with his oncologist monthly for a few more months. Then we will move to every six weeks, then every other month, then every three months, then every six months. In five years if everything continues to go well Brian will be considered in remission.
  One thing that was not pleasant at this past appointment was discussing all the things to look for in Brian as we move forward. Secondary Leukemia and Wilms Tumors are possibilities based on the drugs he has received and the length of time he was on chemo. He has a road map for the next five years, much like he did on treatment. But, instead of what drugs he is to receive when and what dose, this road map says what testing he is to receive as we monitor him for chemo side effects.

We are celebrating that he is done with chemo and his port  has been removed but we are still praying constantly and trusting in the Lord for Brian's future.


I will upload some pictures from Monday's surgery day and a few from Brian's appointment with Dr. Schwartz on Wednesday. (UPDATE: pictures below) For right now, I want to share this picture. Brian drew it about six months ago and I meant to post it but never got around to it. It's a tear jerker. Brian was just doodling one day while I was working on some Math with William or Ansley. Here's his picture:

His little mind was thinking about the hospital and being in the ER. He was remembering a terrible night when he was super upset and we actually left the ER AMA (against medical advice). Every so often he will climb into my lap and say that he is scared of chemo. It makes me sad to see chemo in his doodling but, it's a good way for him to express what he is thinking and feeling and for us to be able to communicate and reassure him. FYI- if you aren't familiar with this picture it is the pain scale hanging on the wall in hospitals. It actually goes from one to ten. The night we left the ER Brian was crying and in pain (the nurse didn't know how to access a port but attempted...twice!) Anyway, I made them leave the room and as I was consoling Brian, he saw the sign and sadly cried, "Mommy, I'm a ten."
        
 Last week I had a slight freak out and rushed Brian to the pediatrician. He hasn't seen her for an appointment about himself in almost four years. But I wasn't getting answers from the oncologist and I just wanted more eyes to look at Brian and reassure me that what was going on was in fact minor. I didn't want to get his port removed if he was going to need it a few months later. Brian has had what appears to be eczema on his face for seven or eight months. The steroid cream that Dr. Brown gave us back in January bleached Brian's face and didn't really heal the break out. I refused to use it after two months of it not working. Brian also said it burned really badly. I wanted our wonderful pediatrician to look at it and confirm that it was in fact eczema and not LCH. She said lots of people are experiencing eczema issues right now and to try a couple of over the counter things we hadn't tried first. She also gave me a prescription to try if the over the counter stuff didn't work. She totally understood my stress given the last four years of our lives. I LOVE our pediatrician. So, we moved forward with the port removal.


 Here are some pictures about Brian's port removal:

For our Sunday night small group at church the kids were asked to write a prayer request or praise. This was Brian's request the night before his port removal surgery. We pray that it is out and he doesn't ever need another port and more chemo.

Monday morning, Brian was a little nervous. There was some major miscommunication and unnecessary drama, but long story short, Brian was NOT on the books for port removal surgery. The nurse practitioner with peds surgery was awesome and she sweetly called the surgeon to squeeze Brian in at the end of the day. It was a LONG day and poor Brian had lots of time to be anxious.

One last picture of Brian with his second port. Implanted September 24, 2010, removed July 29, 2013

We are praying that this is the end of surgeries and hospitals for our Brian.

Being wheeled away from us...

In recovery and giving a faint smile at being told he no longer has a port in his chest.

Here's Brian a week or so after surgery. For some reason his scar is twice the size of his previous three port related surgeries.
 

The scar.

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.

And we've heard...

We heard from Brian's doctor in Texas. A week ago we got an e-mail from Dr. McClain that said the MRI was good but that he was out of town and wanted to look back at his notes before answering any of our questions. Our immediate response was an overwhelming emotion of HALLELUJAH! Brian's done!!!  Then it shifted to wait a minute... hold everything! What if the MRI being good means that he can read it, not that it was good news but a good image to work with?! Over the weekend we waited to hear back from the doctor on Monday as he said he would respond once he was back in office. That weekend (last weekend) my Aunt Carol passed away. On Monday we were headed over to Panama City to be with family and attend her funeral. We were on the edge of our seats all weekend so on Monday afternoon we e-mailed Dr. McClain. He responded pretty quickly. Because of the funeral and traveling out of town, to immediately having a doctors appointment here at Sacred Heart, updating the blog kinda got left out. I am so sorry.

Here is what we heard from Doctor McClain:

Here is my plan: I recommend stopping treatment now, but wait 3 months before taking the port out.  He should have office visits with a CBC and liver function tests every 3 months for one year, every 6 months for 2 years, then annually to assess his neurological function and monitor for any evidence of growth delay, hypothyroidism, hyogonadism, or hypoadrenalism.  An MRI of the brain should be done annually which we can schedule the day ahead of, or same day of your visit.
Sincerely,
Ken McClain M.D.

We take that as good news in that Brian is currently not taking chemo. However, because we have to leave the port in he must have it flushed every month. We did that late Wednesday afternoon and it was horrible. Brian DOES NOT understand that he is not getting chemo. If you have to access his port, he calls it chemo. He put up quite a fight and wailed and screamed. We get to do that a couple more times, once in June and once in July. Then at the beginning of August we head back to Texas for Brian to see Dr McClain and get assessed. If all is still good we will hopefully be permitted to take his port out. If not, we will cross that bridge when we get to it. We understand the delay in removing the port. Given Brian's history it would be unwise to remove it so early "off treatment". But we are SO READY to get it out of Brian's chest.
  Please pray that the next three months (well, and forever...) will be without LCH activity. That Brian's disease is resolved and he can live a "normal" childhood. I say normal with quotes because you saw the above. Even if everything goes great he will still frequent doctors offices, labs, radiology, etc. By the time he is done with this time table, again if all things go well, he will be over ten years old. It was one month after his third birthday that he was diagnosed. He doesn't remember anything other than chemo, ports, needles, bloodwork, scans, etc.
   I am not sure if I have mentioned this before or not, but not too long ago we were all chatting about extra curricular activities. The conversation went something like this, "Ansley has piano and dance; William has guitar and piano; Olivia has dance..." and then Brian piped up with, "and I have chemo!"
That completely ripped our parents hearts out. Over the years we have repeatedly asked Brian if there was something he was interested in learning or doing. There hasn't been. He either hasn't been interested or hasn't had the energy. Legos have kinda been his happy place. We are hoping that in three months time that Brian will be able to have his port removed. Because that will feel like a real beginning of the end.  :-)
  Thank you for continuing to pray for Brian and our family.

 As of yesterday, Brian is now missing both of his front teeth. He is so adorable!

Back to Texas

We're heading back to Texas.

This week is a chemo week but we are headed back to Texas on April 15th. Brian will have an MRI at Texas Children's on April 16th. Please be in prayer for our family as we are really hoping that Brian will not need more chemo. We found out on Monday that this week is the last week of treatment for the current protocol. So, drum roll please... if Brian doesn't require more treatment (to be determined from the MRI done in Texas) than he will be FINISHED with chemo by the end of this week. We are really hopeful and are praying constantly that our sweet boy can finally be done with chemotherapy after a very long three and half years of treatment.

Here's this month's chemo calendar.

The birthday cake on April 15th is for my b-day. (Carrie) My gift this year is that I get to go the DMV and renew my drivers license that will expires on the 15th. I certainly hope they don't make me take that written exam about traffic laws and how many car lengths you should be from the car in front of you. It's been almost 20 years since I have read about all that. :-)

Back from Texas

We had such a wonderful trip to Texas and thank you all for your prayers. We LOVE LOVE LOVE Dr. McClain. He was so patient with Brian and super knowledgeable. It's amazing, in the last three and a half years of doing this Fred and I have seen that we typically have to direct the doctor, point out certain things and ask LOTS of questions. With Dr. McClain, we went into the room and didn't have to open our mouths and we were able to tell that this man KNOWS what he is doing. He asked us questions and told us what we probably have experienced and what we can expect. He was right on with everything. His communication with us gave us a huge sense of comfort and peace. Dr. McClain did some clinical evaluation of Brian that assessed what Fred and I were most concerned about, and that is neurological involvement. From that clinical assessment it appears as if Brian does have some neurological involvement, but Dr. McClain commented that he really needed to see an MRI of Brian's brain. All of the scans that were sent to Dr. McClain were unreadable. He described them as an over exposed photo. We had CD's of all of Brian's MRI's, including the one from last Friday (March 8th), and we gave those to Dr. McClain. We are hoping it is a better quality than the ones that were sent to him from Sacred Heart. Dr. McClain wasn't sure if there was some technical problem in the sending of the information, that somehow things went haywire and messed up the imaging, or if the imagining that he was seeing was really the MRI imaging that Sacred Heart had taken. We are praying that the CD we gave him will be readable and not "an over exposed photo".

So, here's where we are:
  We are waiting this week to hear back from Dr. McClain. We will either hear that a.) We need more imaging and to get a new MRI taken somewhere else b.) all is looking good and Brian can complete this protocol and be done with chemo (this protocol that Brian is currently on will complete in a couple of months and was suggested by Dr. McClain last March when Brian was diagnosed with Diabetes Insipidus.) or c.) Brian's MRI revealed the need for more chemo and it will be a higher dose of  Cytarabine (also known as Ara-C) and will extend treatment for six more months.

 We are assuming that Brian will probably end up with more chemo and the higher dose of Ara-C based off what we saw with Dr. McClain in his office. However, we are hopeful that Brian will be done with chemo after this protocol in two months. We would really appreciate your prayers for Brian during this time. We kinda feel like anyway we go, even if he has a few more months of chemo, that we see the finish line. And for that, we are very excited.

     We are so thrilled with Dr. McClain and the work he has done for families like ours with a little one with LCH. Brian has now been added to a study Dr. McClain is doing, and Fred and I even gave samples and filled out a questionnaire. We are happy to help with the research and treatment of LCH in any way we can.

    Dr. McClain is so knowledgeable that there is just a huge relief in knowing that Brian is under his care. The research and treatment of LCH is what he does. It's not just something he may have heard about in medical school years ago, but he has spent his life in research and treatment of LCH. HE KNOWS ALL ABOUT IT. (I cannot stress this enough. We've had several frustrating times as parents trying to convince our local doctors to hear us out, only to be given the response of "that's not related to LCH", when we *know* things are not right. To walk into Dr. McClain's office and get validated that what we experienced IS in fact LCH was a huge relief. Not because we want to be right, but because we can RELAX and know that our little boy is getting the best care possible for his disease.) This disease is so rare and some oncologists may never treat a child with LCH, yet Dr. McClain sees hundreds. People from all over the nation and even the world, travel to Houston for their medical expertise. We were told that a great number of people go to Texas Children's Hospital just to see Dr. McClain. We really wish that we could go back to three and half years ago when Brian was first diagnosed and have gone immediately to Dr. McClain, but we can't. Sitting and thinking about the what if's will not change anything. We are thankful that we are with Dr. McClain now. We feel so blessed that we are able to call Dr. McClain Brian's doctor.

Texas Bound!

We are headed to Houston today to see Dr. Kenneth McClain. Brian's appointment is tomorrow morning. We picked up the CD of last weeks imaging (from his MRI of the brain) and we are ready!!

Prayers appreciated. We will keep you updated.

MRI

Brian had an MRI today. It was scheduled for 11:00 AM with check in at 10:00 AM. We went to chemo at 9:00 AM, then headed to check in with MRI. It was horrible scheduling for a child because Brian hadn't eaten since dinner the night before. (He can't eat or drink because he has to do his MRI's with sedation). Of course they were running an hour and a half behind schedule so the poor boy had to sit hungry and thirsty until we went back got checked in, and got his versed at around noon.

  Brian had a loose tooth that was ready to come out and it had to be removed before they could intubate him. The anesthesiologist said she would pull it after they gave Brian Propofol and save the tooth for us. (The anesthesiologist was super great with Brian when we checked in with her and she gave him Versed before taking him back like we requested. She was very patient and engaged Brian in conversation on his level. She even let him play Angry Birds on her phone while we waited for the Versed.)
  When we were taken to Brian's bed in recovery he woke up vomiting blood. It was very upsetting, but after a couple of minutes the nurse reminded us that he had a tooth taken out. It must have bled down his throat during the procedure. Since they had already de-accessed his port we were unable to get him some anti nausea medicine until he was awake enough to swallow a pill of Zofran. Brian already being de-accessed is a result of a whole other story that I will not get into on the blog. Let's just summarize it by saying that in the past I have de-accessed Brian's port in recovery, and Fred and I have an AMA (leaving the ER Against Medical Advice) and a formal complaint under our belt from a recent ER experience at Sacred. We will not tolerate poor care for little Brian. Pretty sure the words we exchanged with the MRI check in nurse ruffled her feathers and she made sure he was de-accessed before we got back there. STRESS. Poor Brian continued to throw up even after we got home. He was fine by bedtime, but it is so sad to see our sweet Brian go through so much unnecessary drama.

Update 2-22-13

WOW, I have really neglected our blog. I am so sorry. Some of you receive e-mail updates from my dad so you are in the loop, but I will go ahead and give a quick recap of the last month.

Several weeks ago I found out I had shingles. I am thankful that it was a very mild case. I was told it can be brought on by stress. We live at "stressed". :) Fred and I often talk about what life would look like if Brian didn't have LCH. We cannot imagine. We cannot even comprehend what life would be like without chemo, Diabetes Insipidus, blood work, MRI's, doctors appointments, several pills a day and several prescriptions a month...

I am thankful that it was a very mild case of shingles.

Brian's last treatment week was delayed one week because of his ANC being low. It stinks that his counts were low, but it was kinda an answer to Brian's prayer. God shows us HIS love for us all the time. Brian's treatment week was scheduled the week of Olivia's birthday. He was very upset about "missing" her birthday. When he has his port accessed he doesn't like to go anywhere or do anything. We stay at home and leave only to go to the hospital for treatment. Olivia's birthday was a Tuesday and while we planned her party with her friends for the following Saturday, Brian was very upset about being accessed on her actual birthday. With the low ANC, chemo was delayed and Brian was able to enjoy the birthday festivities port needle free. Brian was glad and this mama smiled at just another way God shows us that HE cares for us.

Brian's chemo week was February 4-8th. Monday and Tuesday were not good days. Brian got very upset when we had to access his port on Monday. It was horrible and both Fred and I were spent when it was all over. Tuesday Brian got sick. Not sure what it is about magical day two, but Brian always gets sick on Tuesday. Uncle James and Aunt Kasy were in town all week so Aunt Kasy went to chemo with us on Thursday. Brian really enjoys having his entourage of siblings. He prefers it and doesn't want to go to an appointment without them. Having Aunt Kasy come along was fun for all the kids. They enjoyed telling her everything she needs to know about chemo appointments.

The Friday before treatment week we went back to the lab to get Brian's ANC checked.

Brian upset at the lab. He didn't want to get his blood work done.

 After school on Monday we went to lunch at Chick Fil A with Uncle James and Aunt Kasy before we headed to chemo and they headed to the Navy Base for the week.

The girls with Aunt Kasy.

The boys with Uncle James.

 The pictures are out of order as Tuesday was PJ day because Brian didn't feel well. But, here are some pictures from treatment.

On Thursday we also finished signing all the releases and filling out all the paperwork for Brian's referral to Texas Children's in Houston to see Dr. Kenneth McClain. We don't have an appointment date yet, but when we do we will let you know.

 Brian has to have another MRI in the next couple of weeks and his next chemo week is scheduled for March 4-8th. Please be in prayer for him as he doesn't like MRI's. A couple of days ago I overheard William and Brian talking to each other. They were playing "MRI." Brian was telling William all about it and explaining that "when I wake up my legs don't work for a while."

It makes this mama's heart sad to Brian's voice get shaky and scared when he tells William about a MRI.  I am thankful that I was able to overhear the private moment between brothers. It lets us know what's going on inside of Brian and we can better help him process and deal with what is in front of him and what he has already endured the last three and a half years.

It has been three and a half years of battling LCH. It's been long and it's been taxing. We would change it in a heartbeat if we could, but we have seen how God has used it, and is still using it, for HIS glory and our good. We know that we are lifted up in prayer all over the world. It is such an encouragement to know that we are not alone and that other people care. The body of Christ has supported us physically as well. When our van needed more repairs, when our washing machine needed a part replaced, when I had shingles and was just exhausted, we received gifts from the Lucas family, the Wit family, and the G & J Hayes family and the Chocolate Circle Bible Study Group (headed up by K. DeVries). God provided through the generosity of others and we are so blessed. THANK YOU SO MUCH!!! 

Several of you have asked us what we need and how can you help us. We never know quite how to answer that. We have never had to ask for anything, God always provides right when we need it. For example, The Wit family gave us some restaurant gift cards for Christmas. They were to be delivered by my sister. We just saw my sister for the first time since Thanksgiving at Olivia's birthday celebration. Had we received the gift cards at Christmas time we might have used them for a treat for family fun night or something like that. Instead, we received them when I had shingles. While the case of shingles was so very mild, the medicine I was taking made me so dizzy that I felt sick every time I took it. I was suppose to take it three times a day. The timing of receiving the gift cards was perfect. We were able to use the gift cards when we needed them. God is pretty amazing like that. Fred and I see it over and over again.

I do have an opportunity for a fundraiser that will directly help us out if anyone is interested. PLEASE DO NOT FEEL OBLIGATED. I tossed the idea of putting this on the blog around for quite some time. I don't want to come across as "give to us". The reason I put the last paragraph up was to show that we KNOW everything comes from God. HE provides. With that being said, a couple of my friends scolded me for not posting about the fundraiser. So, here it goes...

We are a part of a home school group, Classical Conversations. We LOVE it and cannot say enough wonderful things about our group. We meet on Monday's at a local church and the kids are each in a class. They get to do science projects, art projects, learn about the orchestra, classical music, timeline, history, math, Latin, science, English grammar, geography, etc. It is a non negotiable in our house. It gives me some accountability in our home school and keeps us on track. The kids LOVE it and we gain so much from being a part of this community. Just this year the kids have dissected owl pellets, drawn like El Greco and learned to play the tin whistle. All things I would not have done with just the five of us at home. There is a cost to be a part of the group. It covers registration, supply fees and tuition. Our community is currently doing a fundraiser to help each family raise money to cover their fees. So, the money we raise goes directly to my kids and my fees, not to the entire group. If you are interested you can purchase something from Mixed Bag Designs and 50% of your purchase goes directly to my kids. (If you are not local and you order online it's shipped to you and 40% of your purchase goes to my kids.) I am including a picture of the handout we received so you can follow those instructions if interested. If you have any further questions you can e-mail me. I cropped April Morgan's e-mail address off the flyer because I didn't want her to get a bunch of junk mail because I posted her address on the Internet.(She's the CC Director here in Pensacola)
  If you want to email me and don't know my e-mail address please post a comment on the blog and I will get with you.

Sorry, it was raining the day we got these and there is a smudge from a  rain drop. The web address is www.mixedbagdesigns.com   The referring participant's name to enter is SCHREIBER

Thank you for your love to our family and constant prayers for Brian Robert.

 

Brian doing a presentation at school two weeks ago.


 

                        

                          chemo calendars

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.

Hello

We are still here. :-)

We had a wonderful four week break from chemo. Brian was scheduled to have the week of Christmas as his next chemo week. We said "no thank you", and his doctor agreed. We pushed chemo to the week of New Years.

This year we decided to stay home and rest the week of Christmas instead of traveling to see family. It was so providential because we ended up with the flu. I (Carrie) got it first on Christmas Eve. I assumed I had the illness my sister had earlier in the week, so I kept thinking I would be OK in a day or two. By Thursday I was saying my goodbyes to everyone because I was sure I was dying. So, when William and Fred started to feel poorly on Thursday evening, we took William in to the doctor Friday. We discovered it was the flu and the entire family got on Tamiflu, except me. Apparently you have to start Tamiflu within so many hours of your first symptoms. Out of the six of us everyone but Brian ended up getting sick. (remember he got the flu shot.)  PRAISE THE LORD THAT BRIAN DIDN'T GET IT!!!! Fred, Ansley, William and Olivia didn't get too sick because of the Tamiflu, but Miss Ansley had the horrible Tamiflu side effect of throwing up. Praise the Lord we are over it and we are healthy. Fred was a great husband and took care of EVERYTHING while I was in the bed or on the couch. (He even made Christmas dinner all by himself.) I was kinda useless for a full week.
    Brian's chemo week was at the tail end of our flu week so we had a sweet friend (Thank you Cheryl B.) come watch the three kiddos while Fred and I took Brian in for his Monday doctors appointment. (Dec. 31). We needed to both be there to present some concerns and discuss options with the doctor. We prayed about this visit and God totally answered our prayers. Dr. Brown handled the entire situation wonderfully and we are being referred to Dr. Kenneth McClain of Texas Children's in Houston. We are super excited and cannot wait to see him as he is the expert on LCH. We do not have a date set yet, but when we do, we will let you know.

     Chemo went ok. Brian had chemo Monday, Wednesday, Thursday and Friday b/c of the New Years holiday on Tuesday. So his doses were increased to get the normal five days of drugs administered in four days. He did alright. He felt a little sick and yucky on Monday, but did fine the rest of the week.
   This week are we getting back in the swing of things. Music and dance lessons start back today and our Classical Conversations group starts back Monday. Thank you for your prayers. I still have not fixed my photo problem. This past month has been on fast forward with a full week taken out b/c of the flu. Hopefully as we get back into our normal routine I will be able to get that up and running this week. I have some super cute pictures to share.