Thursday, May 31, 2012


     We purchased our house in 2008. God directed us to it. Really. We were in a rental that we had to get out of quickly and were trying to purchase a home. The home we found and had an offer on was a short sale. We were told it could be weeks before the bank responded. The day we heard from the bank was not good news. The number the bank gave us was higher than what we had set as our budget. We didn't have the time to counter and wait weeks on end for a response. Fred had made the wise decision to discern how much we could afford since I stay home with the children, and we had planned on sending them to a private Christian School. We needed a mortgage that would continue to afford me to stay home and pay for Christian School tuition for several kiddos. (Verses making it work. We technically had the money to make it work.) Disappointed that this house slipped through our hands, I sat back at the computer and searched MLS listings. I was getting extremely disappointed at what was available in our price range. We could find a decent house, but when we would drive by it, the neighborhood seemed iffy. I was getting grumpy that we didn't just make it work with the short sale house. Anyway, we saw a listing that didn't have pictures, but the price was in our range. I had looked at a couple of other houses in that general area and new it was a good neighborhood. We had never seen this specific listing before. I quick jotted down the street and my mother in law and I jumped in the van and headed to do a drive by of the house. When we got on the street I turned the GPS off and slowly drove down looking at each house, just taking it all in. There was only one for sale sign on the street, so we pulled in front of it. It was obvious an older lady lived at the house. I noticed the for sale sign had a flyer with pictures so I went and grabbed one. Almost immediately I noticed the price listed on the flyer was $40,000 more than what I saw on the online listing. That made it out of our price range.
As I headed back to the van an older lady came out the front door and asked if she could help me. I let her know I was looking to buy a house, but her flyer let me know this was one was out of my price range and she might want to let her realtor know the online price was different then her flyer. She responded with, "Well, you caught me on the right day. I might just sell it to you for what you can afford."
I told her how much we had budgeted and why.  She opened up her front door and welcomed me and my mother in law into her home to see if I was interested. I told her if she was serious about accepting less then I would love to look around. Her home was built in 1968 and was outdated, but it was very clean, had four bedrooms, in a great neighborhood (with a park!) and in our budget!! As soon as I stepped into her sun room I was sold. I was so thrilled I asked if I could bring my husband back.
We made our offer, but her realtor had her counter. Fred responded to her realtor with, "No thank you. We were serious about our budget cap and offered what we could afford." Within an hour the realtor called back and said, "Congratulations, you bought a home! She accepted your offer!"  

After the deal was sealed we learned that:
   (1.) The seller was a Christian. Joy told her realtor that she knew we were not trying to pull one over on an old lady, but that she could tell from that first interaction with me that I was a sincere Christian.    (2.) The listing we saw online for the cheaper price was actually three houses down from our new house. The online house was a short sale (why it was cheaper) and had just gone under contract a week before. The day my mother in law and I drove down the street looking for "it" was just a couple days after the sign in the yard had been removed.

God directed us to our house. He gave it to us.  

There are so many lessons to be taken from that experience it is amazing! God continues to use our house as a means to sanctify me.

We moved in the first of Nov 2008. We were thrilled to get to work updating and making the house our own. Fred is extremely capable and talented at just about every home improvement project. And my dad updated all the electricity and installed ceiling fans. One of the first things we tackled was painting kids rooms and getting them settled so they could have some stability. Between those projects and Thanksgiving, Christmas and New Years, 2008 flew by. (Take in mind we are doing all of this with a then infant, two year old, three year old and almost five year old under foot.)

In February '09 Fred had his second back surgery. That put things on pause for a bit. But by April he was right back at it, working on the house. He removed the linoleum and put down a hardwood floor in the foyer.

Brian playing on the foyer floor in '08. The BEFORE picture. I told you, out dated.   

Fred, the hard worker. He cannot be kept down.

The kids playing "the pillow game". They take every pillow they can find and line them up and jump from one pillow to the next. I remember playing it as a kid. Don't all kids play this...   ;-)

Making progress!! Looks great!

During the begining of '09 God was working in our family in regards to our schooling choices. Remember, part of our decision to set our budget for buying a house the way we did was so we could afford private Christian School. I remember having a conversation with my mother in law about homeschooling in Feb '09. I felt like God was calling me to homeschool Ansley, but I just wasn't interested. I wanted my children to have the same experiences I had growing up. When we discovered the school we were going to send Ansley to was from 7:45 AM until 2 PM (or 3...I can't really remember now) for Kindergarten, with an hour nap at the school, we knew that was not for us. Ansley had never been away from me. That just seemed too long. So, we figured we would homeschool Ansley's Kindergarten year and then send her to the school for first grade. (When we pray for wisdom God always gives it. HE made it obvious what we should do.)

I didn't have much confidence (or desire) to homeschool so I started out in my little attempt to homeschool in May '09. We started early so that if (when) I fail, we still had time to enroll her in school for the fall.
(I am giving you guys a peek at my rotten attitude and stubbornness. We are not awesome people. Anything good in us that you see is Christ in us. ) 

Summer '09 my little sister got married and we were back and forth from Panama City ALOT! It was also during this time that we noticed Brian had all these curious issues. You can read about that HERE.

Throughout those months as we did our school work, Ansley and I actually ended up really enjoying our homeschool. It was really working well. When Brian was diagnosed it was like a light went on and I thought, "OK, God, this is why you had us homeschool". And because we started in May, Ansley and I were able to take the fall off and process everything that was going on in our home with Brian and his illness. Homeschooling eliminated outside germs and outside schedule demands. It has been so wonderful. We have been homeschooling for three years, going into our fourth, and we are really enjoying it. There are so many positives I could go on and on about it.

In September 2009, after Brian was diagnosed, home improvement projects became low on the list of priorities. About the only thing we got accomplished in 2010 was Fred ripped up the carpet and took the hardwood floor down the hallway leading to the bedrooms.

2010- 2011 was a really rough time for our family. Enough said.

I struggled off and on with remembering this was the house we lived in before we moved to Pensacola. 

Everything was brand new, nice granite, huge garden tub, the house was large and open...

to living in a home built in 1968. I saw the vision of what it could be when we first walked through the house, but almost all of that has been halted due to life. And like the Israelites, I often forget what God has given me and what he has done for me, and I want what I want.

There are times that we see what we have been given and we rejoice that we don't have a high mortgage.  We would not be able to juggle a high mortgage and the thousands of dollars of medical bills. God provided what HE knew we would need and gave us gifts we didn't even realize we wanted. I have cherished my time with my little ones. Our "baby" is almost four and a half. It happened too fast. We struggle with Brian's illness, and we know how precious life is. We treasure our time as a family and love the amount of time we get to be together. It is a great gift. It will be gone before we know it.

Even still, everytime we really looked at our home we saw it was crying for some attention. It needed some updates and renovation. (You know how things just become scenery, then when someone comes over, what has been there all along unnoticed, just kinda stands out and you really see it?!)

So, in February of 2012 we started the major renovation projects. We were getting excited about our house becoming what we had planned in 2008. So, in March of 2012 when we realized Brian was about to begin another year of chemo, and the new protocol was one week of daily chemo followed by three weeks to recover before he gets hit again, we were stressed not only for what this meant for our little boy, but because we were only a few steps past this process:


After Brian's first week of chemo we finished the floors and got our house "livable".  Renovations were put on pause and operation "make it work" took over.

Brian's second week of chemo started out like this:
Monday morning...
The dog had explosive poops in her crate during the night. Not a nice smell to wake up to. Especially since we had to rush out the door to get to...

Fred's six month post surgery follow up for his spinal fusion.

Things were great with Fred's fusion. I asked the doctor if I could take a picture so I could show our five year old. I told the doctor I wanted to show our son that, "see, Daddy has to do x-rays too". We explained that our five year old son does scans frequently for his Histiocytosis. The doctor replied, "OH. Wow. That's rare. Sorry to hear about that." It was a weird moment. Not sure how to describe it.

So, after that appointment we had a couple of hours before we had to head back to the house and pick up Brian for his doctor's appointment and chemo. I had the bright idea to run to Lowe's really quickly and pick up some baseboards and trim. My thought process was that since Kasy was watching the kids we could really make some progress on our house. Famous last words...

We purchase the baseboards and trim, loaded them in the van (like ALWAYS!!!) and as soon as Fred shut the back of the van, the boards shoved through the front of our van windshield.


And you guys know how the rest of the week went.Tuesday night we were admitted for our week long hospital stay. Followed by a week of home treatments.

And now chemo week three has already included it's own ER visit. Wow, we have a long year ahead of us.

OK, why am I sharing all of this?
Because it drives me insane to read blogs of people who only put their best foot forward.

 Christians were made for relationship. We need each other for fellowship, authentic conversation that edifies, accountability, encouragement... The list goes on.

I inwardly cringe when others say how amazing Fred and I are, and what an amazing example we are to all who see us walk through this time in our life. I am sure we can look pretty awesome from a distance, or if you spend an a hour or two with us. Anyone can pull it together and look wonderful for a short time. (Plus we have super cute kids. :-))I am actually pretty good at pulling it together and seeming OK. I have some amazing training in that area. I am a pastor's daughter. :-)  My sister Dabney and I got pretty good at verbally assaulting each other with 'I hate you's' and 'don't ever touch my stuff again' as we were in the car on the way to church. Only to then hop out and be sweet to all we encounter as if we didn't just have WW3 on the way to worship with no confession or apology. You know what I am talking about, the "let's just leave this in the car".

 Fred and I don't want to give someone a false glimpse. We know the real us and we are not an amazing example. Seriously, everything good you see in us is Christ's work in us. Quite honestly, we have been through some of the worst years of our lives these past five years. They have been horrible. Probably if left to ourselves, and had we seen what was ahead, we would have both thrown in the towel and walked away from our marriage. We probably would have been less than stellar parents and just plopped our kids into whatever extra curricular activity or school kept them busy so we were freed up to "take care of self". 

I am being honest. Things have been a tough. Fred and I want to really encourage others. We don't want anyone to look at us and compare their marriage or family to ours and think that we have it all together and then get discouraged about their own situation that is hard. Because life is hard. Everybody's "hard" looks different. We want people to know that it is not Carrie and Fred. You can have what we have, because what we have is Jesus.

It drives me crazy to know some behind the scenes information about some friend, then see or hear her in public go on and on about how perfect everything is and my, oh, how God has blessed her to have everything so perfect. All the while I am thinking inside, I am going to scream!!! Please don't let this poor sweet person you are talking to feel like God hasn't blessed her b/c her life isn't perfect.

God's blessings in our life have not equalled "perfect" times. God has blessed us multiple times by having us walk some very painful paths.

 Fred and I were invited to a marriage thing in January (thank you R & M...we love you) and heard Warren Barfield for the first time. We LOVE him. He tells a story about a fight he had with his wife and a song he wrote for her shortly thereafter. One of the lines from the song he wrote for her is "and if we should try to leave, may God send angels to guard the door..."

That brought tears to my eyes, because that is Fred and my story. We are selfish, sinful people. Marriage and parenthood require a sacrifice of self that hurts. God is keeping us together and working in us.

So, if you are reading this, know that our hearts desire is that you are not deceived by the Father of Lies. Nobody has it all together. Don't be envious of someone else's marriage, family, house, etc. 

 God loves us and HE is carrying us through. HE is using everything to chisel away at our hearts of stone and reveal a more Christlike character.

Chemo Week Three, Day Three

After several hours in the ER last night we came home and got some sleep. We woke up and headed back to the hospital for more chemo. We are praying that Brian does not get sick again today. You can see from the pictures that Brain is obviously feeling much much better. It's kinda sad to know that we are giving him medicine that makes him feel bad.

We are so thankful that Brian loves playing on the iPad. He passes many chemo and sick hours playing games on the iPad.

So much going on in his little life and still so very happy.

Cutest little five year old in the world.

New Calendars

Now that April and May are behind us we are moving into June and July. We are only putting a couple of Brian's chemo calendars up at a time in an effort to not overwhelm him. Brian was thrilled to see June had Mickey Mouse "circles" highlighting our trip to Disney World. Several months back Brian was granted a wish from the MAKE A WISH foundation and he chose Disney World. We are looking forward to that special trip and cannot wait for the surprises that are ahead for all six of us.

Here is Brian this morning super excited about his new calendars and showing off his breakfast. That's right, he had a sugar cookie with pink frosting for breakfast. We are just thankful the boy is eating again. (and able to keep it down!!!)

       Not too long ago I read a tweet off of twitter that said the following: "My daughter ate ketchup and ice cream for dinner. If you need any more tips on shepherding a child's heart, let me know."
  I laughed my head off for a long time!!

Wednesday, May 30, 2012

Third Chemo Week- Days 1 & 2

Week Three of chemo started out on Tuesday b/c of the holiday on Monday. We were told that Brian's doctor adjusted the medicine he receives over a five day period to fit it into four days. That means each day of this chemo week Brian will receive a higher dose each day.

Tuesday was LONG. We arrived at the hospital at 8:30 AM. The girls and I had to leave at 2:15 PM to get to ballet on time. (Their recital is next weekend and that was their last ballet class at the studio.) Fred and the boys were able to leave the clinic around 3. We spent most of the day waiting. Waiting on blood work results from the lab, waiting on chemo to be made and waiting on the staff to get to us. It was a busy day for them. 

We had all the kids with us. They did AMAZING. Several people commented on them behaving so well. It was totally God blessing us, because they are not typically as well behaved as they were on Tuesday. Especially when they are cramped into a small room for hours on end.

Things did get a little crazy towards the end of the day when Brian was asked to share his water bottle. He didn't want to share with William and threw quite a fit. He hasn't thrown a two year old temper tantrum like that in quite a while, so I took pictures. We showed him the picture and he was laughing about it. Yes, the big fit was over sharing a sip of water.

Wednesday (day two of chemo week) went fine. Grandma and Grandpa Schreiber arrived from NM lateTuesday afternoon so they stayed home with the other three kids. Brian's apointment only took two and a half hours. Brian did great. He took Mickey Mouse with him because he is looking forward to our Disney Trip in a few weeks.

After lunch Grandpa and Grandma needed to run to Sam's. All the kids wanted to go along, so against my better judgement I said we would all go. Fred and I always try to find the balance between allowing Brian to be "normal" and knowing when to tell him no he can't participate. We were in Sam's all of six minutes when Brian started asking to go home. He really didn't feel well. Brian and I went to the car while Grandpa and Grandma quickly finished their purchases.

Brian in Olivia's car seat. He normally sits in the back, but wasn't up for climbing back there himself.

Brian fell asleep on the couch and continued to say his head hurt, he was cold and he didn't feel well.
He was running a fever. He slept off and on.

 He did not eat dinner, and by 7 was running a temp of 102 and throwing up. We phoned the oncologist on call (Dr. Schwartz) who told us to head to the ER. He said if Brian was not neutrapenic (counts below 500) he would allow us to go home after antibiotics, but if Brian was neutrapenic he would be admitted. He also told us that Brian's counts were 900 on Tuesday morning before chemo.

After three hours and some antibiotics Brian was able to come home. We were thrilled that he was not admitted, but we were sad to know that this is his reaction to the new chemo drugs. Thank you for your continued prayers for Brian Robert.

Friday, May 11, 2012

Hair & Chemo Info

A couple of people have notice that my hair went from this:

To this:

...and asked what motivated me to chop off so much hair at one time. Well, when Brian was first diagnosed one of the questions I asked was, "Is he going to lose his hair?" It wasn't that I was so concerned about his appearance for a vain reason, but I wanted to be able to prepare William and Ansley, who, at that time, were 4 and 5 1/2.
   I don't remember if it was Dr. Chatch or Nurser Jennifer, but one of them responded to my question with a "He may, but he may not. We don't know. Everyone responds differently to the different levels and different drugs given. Be thankful he is your three year old boy and not your 13 year old daughter."

I cannot imagine telling my daughter she going to lose her hair. But this past August my good friend was diagnosed with cancer and I thought about losing my own hair as a 33 year old. I decided I wanted to chop mine off for Locks of Love in honor of my loved ones on chemotherapy battling a form of cancer. So, while my hair cut is not my favorite for me, I do have hair and the length will grow out (and probably pretty fast).

For the record, I did a post about Brian's hair during chemo round one when we were entering chemo round two. HERE's the link.

Chemo Round One- September 2009- April 2010
Chemo Round Two- October 2010-  ? was suppose to be over October 2011, BUT chemo round two...was, well, complicated. It's all on this blog. You can go back and read, but we realized chemo round two's new combo of drugs was not working. In March 2011 we switched it up and returned to the old combo of drugs that we knew would work. Doing this started chemo round two over with a new induction phase and set the clock for the "one year" back to month one. Instead of completing protocol in Oct. 2011 he finished March 8, 2012. So, I guess it could all be considered one round, or two, depending on how you look at it.
Chemo Round Three- April 2, 2012- anticipating completion in April 2013

Wednesday, May 9, 2012

Update 5-9-12

First, I want to share one the sweetest pictures of little Brian. He has so much going on in his little life, but he is the sweetest, happiest boy. This picture shows him extra happy as he got a card from our friend from church, Jacob. (Thank you McGaw's for picking out a card that sings. We've listened to it play the little ditty no less than 207 times. Seriously though, thank you, Brian loves it!) :-) Brian adores Jacob. Jacob is 19 and Brian will get silly and act shy around Jacob. He gets really excited when Jacob talks to him.
Brian with his "Jacob Card"

Now the tough stuff. When we were discharged on Monday a home heath nurse came out and showed us how to use the rental medical equipment. Every eight hours around the clock we give Brian an infusion of Vancomycin. We use the S.A.S.H. method.   ;-) Just call Fred and I oncology nurses, b/c we now flush Brian's port, hook him up to the pump for an infusion, then flush his port again before we Hep lock him. (For all you non medical people, that means we give him Heparin in his port so it doesn't clot.) I am being totally silly. We am not a medical professionals at all. But we are learning all the jargon and picking up a few things here and there.  We are just parents and while we feel totally confident in our ability to do what needs to be done, it is still extremely stressful. The first night I had horrific nightmares about messing up and killing Brian. It was AWFUL!!!!  I had to repeatedly come to the Lord in prayer throughout the entire first night. Anyway, we will do this until Sunday morning. Then Tuesday we will follow up with Hem/Onc to get more blood cultures taken to make sure the infection is out of the port.

Here's Brian during his first infusion at home. The home health nurse helped us get him started then was out the door. She did call a couple hours later to check on us and again the next morning. She wasn't too worried about us, as the "screening" questions were 1. Do you have difficulty reading or writing and 2. Are you able to follow instructions? Once she met us, and both Fred and I were ready to be trained so we could both be involved in taking care of Brian's infusions, she knew we were on top of what was going on.

Here is Brian's second night at home. He gets one infusion during the middle of the night. Fred had to work last night so I didn't sleep well after I got Brian hooked up b/c I was afraid I would miss the beep of the pump. So, I sat with him for a while, just looking at him and praying for him. I also took a picture. I was pretty proud of myself for thinking to use a 3M command hook to rig a cool pump pole on Brian and William's bunk beds. (Well, and using the lamp hook. pictured above.)

Tonight Fred is going to let me sleep through the night and he is going to take the 2 AM infusion. I doubt I will be able to sleep, but maybe I will. I have spent the last week sharing a hospital bed with Brian and being interrupted every couple of hours for Brian's vitals or infusions. It's amazing how God's mercies are new every morning and His grace is sufficient. As we were going through the last week (well, really, the last two and a half years) we go about our day, just trucking along. Every so often I look back on our blog and read different entries, and I am overwhelmed. I'll stop and think, "Man, I can't believe we have been through that."
   I was talking to a friend about my nightmares and she told me she was praying Philippians 4:6-7 for me. Later in the day I was reading the verses and reread some notes I had written in my Bible. I am sure I heard a sermon one time and noted what the pastor was saying. In my Bible I had verse 5 underlined. The Lord is near. Then I had written in the margin, "the command 'do not be anxious...' comes after the Lord is near. We are able to rest and be thankful because HE is with us. HE is present and HE gives us what we need when we need it."

So very true.

1 Thessalonians 5:24- The one who calls you is faithful and he will do it.

He has called us to walk this path and HE is sustaining us and doing it. We are not amazing people, it is Christ's work in us. We live amazed.

Monday, May 7, 2012

Pictures from the week

Here are some pictures from the week. I will post stories with them later today. Right now I am going to take a hot bath then get a nap!!!

Brian with Dr. Kummer and Dr. Schwartz. Brian kept calling Dr. Kummer Dr. Schwartz and Dr. Schwartz, Dr. Kummer. He thought they looked alike and wouldn't believe us if we tried to correct him. One day they happened to both come in his room at the same time and I had to take a picture because Brian was just silly.  

The kids first visit together after Brian was admitted. It has been a couple of days since they saw each other.

Visits together made all four very happy. We found things to do to make the time "fun".

Playing Go Fish with the bed at its highest setting.

Outside in the children's play yard. 

The outdoor playground is on the roof of the second floor.

I took this picture from inside. I am by the third floor elevators.

Adam from CC came by to visit and brought Brian a TON of books and balloons. It made Brian super happy and he was proud to show off what the bed could do.

We played dominos (the Brian way) in the oncology playroom.

Even though the oncology play room is only for cancer kids so it is a little cleaner, I still went in with my bleach wipes and Lysol and cleaned before we let Brian play. In the picture below Brian is in a car that he LOVED. By Thursday night he was feeling well enough that he wanted to move around and play!! I pushed him down the oncology hall in this car super fast. It was fun. Brian laughed and enjoyed himself and that was enough for me. It was quite challenging to push him and pull the pump at the same time. :-)

Aunt Kasy play ALOT of Go Fish. I am sure she will always think of our kids when she plays this game from now on.

Brian got a visit from Mea the dog. He got to give her treats when she did tricks. He was happy to see her as he missed out on the dog that visited the day before because his counts were too low for visitors.

The sweetest thing EVER. Brian really wasn't eating the food they were giving him. One day Aunt Kasy brought him Special K from home. The next day the lady that delivers the food had found some Special K and added it to Brian's tray. It was not a part of his menu, she was just observant and super thoughtful!!!!

Every Mommy out there is going to LOVE these pictures. It is was makes all the hard Mommy work worth it. Brian is super happy in these pictures because he is Face Timing with his brother and sisters. They missed each other so much and wanted to be together!!