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!!

First Day of School

We homeschool our children, but we are also a part of a homeschool community that meets once a week at a local church. This is our fourth school year with Classical Conversations. We have LOVED our community in Pace. So much so, that our CC community has become some of our closest friends here in P'cola. The group has grown so much that a second location was opened here in Pensacola this fall. We prayed, cried and discussed what to do b/c we didn't want to leave our Pace group, but it just made so much sense for our family to move to the Pensacola location. So, today we started our first day with a new group of people in a new location. We do know a handful of families that made the move too.

We got everything ready for school the night before so that we were not late. I was so proud of myself on the way to school for all we had accomplished by 8:30 AM. (Spoiler alert...look out ahead for the train wreck!)

The night before...we are ready!!

I woke up at 6:30 AM and started making eggs for breakfast. (both scrambled and hard boiled b/c I have one that doesn't eat scrambled and two that if they see hard boiled want that kind too, and one that only eats scrambled.) As I am getting breakfast underway, Brian comes out of his room upset that he had wet the bed. He had only had two DDAVP pills the night before and, apparently, he really needs three or he will wet the bed. Brian was totally upset about it. I put breakfast on pause and quick started a bath. Once B was in the bath I ran to his room and started stripping his bed to wash the linens. It smelled like a urinal. It was beyond gross. I am pretty sure he slept in pee for a few hours b/c it wasn't completely wet. (Remember he can't help it...he has Diabetes Insipidus.)

By that point I have laundry going, I have breakfast going, I am getting lunches finished up and I happily decide I will go ahead and scrub everyone in the bath myself. Three of the four had bathed themselves the night before, but I hadn't scrubbed them since Friday, and they still need mama to wash their hair every now and again. I figured for the first day of school we would be squeaky clean.

Everything is rockin' along and I feel like wonder woman. It didn't even fluster me when twenty minutes before we needed to leave, Brian came in without shorts, shoes and underwear, announcing he had an accident because he couldn't get his pants down in time. He, who was already bathed that morning, got cleaned up a second time and we put new unders, shorts and shoes on him. At this point Fred jumped in and made the boys PBJ's for their lunch boxes so I had time to squeeze in a shower. (b/c I spent a good five to seven minutes attempting to get a cute picture of the four.)

We were working together as a family and I was feeling awesome. Super mom, that's me!

Olivia wasn't up for pictures. She busted her chin open last night. She probably could have used a stitch or three, but we cleaned her up and steri stripped at home. We used one of our left over sterile packages from Brian's home health care weeks. It would have been WAY more traumatic to take her to the ER. All our kids know of hospitals is what they see with Brian. I am confident she will be fine or we would have taken her in, but needless to say it was a bad wound.

A couple more pictures at the church before we went inside.

Brian wanted to showcase his lunch box.

We arrive with three minutes to spare. I am pretty sure I called my sister, Jess, on the way to school to tell her how awesome I am.

We found some seats and my friend and neighbor, April Morgan (the director of our new CC community), came up to me and said, "I am going to go up in about a minute and welcome everybody. I will make a couple of announcements..."

As she is saying all this I look at her with a goofy "you got it, girl" smile, thinking she is just chatting with me. I am sure I gave her the thumbs up or something dorky to encourage her. She then says, "and then I will call you guys up to the stage."

Umm, excuse me...WHAT?!

April then looks at me and said, "Oh, did you forget? It's your day for family presentation."

OK, as a matter of fact, I totally don't remember that AT ALL!!!

So, right after April walks away I gave Ansley and William a panicked look and and said, "We have family presentation! WHAT ARE WE GOING TO SAY?!!!" William said he would tell everyone that Bigdaddy was coming home from Africa today. I said awesome!

We got up front and I introduced us and prayed. Then we had to lead the pledges to the Christian Flag, Bible and American Flag. I know all three by heart, but I was so flustered I stared down at the page and read them word for word. I am sure I looked real intelligent. :-) My kids just played with the flags.

Then William stated, "Bigdaddy gets home from Africa tonight." That's it. William was done. Nothing further. So, I jumped in and said why our Bigdaddy was in Africa and a little bit about the ministry there. I then ended our "family presentation" with a quick disclaimer. I think I said, "Hello lots of people we don't know...we just bombed family presentation. Hopefully this shows you that you don't have to do anything awesome. It can't get any worse then this." :-)

After morning assembly the kids broke up into their classes to head to their rooms. I didn't know any of my kids schedules and or where to find them for art or science. I had Brian in tow because he isn't going to be in CC this year. He missed several weeks last year and just doesn't want to participate. So, we are not going to have him in a class of his own, but today he didn't want to miss out on the fun of the first day. He has stated that he will stay home every Monday with Daddy who will just have to work from home. :-)

After a good 40 minutes of dragging Brian all around the campus, and yet another emergency trip to the bathroom AND downing an 8 ounce water bottle in two sips, it occurred to me that I forgot to give Brian his DDAVP this morning!! I felt horrible.The poor boy!!! Yes, that completely deflated my super mom ego.

So, our first day of school was memorable. We had a great time and all four kids have lots of stories to share. Hopefully we encouraged some of the families that perfect is no where to be found. :-)

Our 100th Post

This is the 100th post for the blog. For the occasion, I thought I would share some cute pictures from the other celebration we had today.

Cousin Caleb will turn one on Monday and today we drove over to Panama City for his birthday party. It was a good day.

Funny story, yesterday when we were at the hospital getting Brian's blood work done, we had three different people point and stare at us. I couldn't figure out why we were such a sight. I mean, four kids is not that many...

   I finally put it all together when I looked at a picture I took of the kids yesterday. You can see what I mean in the picture below too. I think because I dress the boys alike and the girls alike OR dress them all coordinating (because I think it's cute) in combination with them being so close in age, that people are staring to see if they are multiples.

So, here are our cute kids that get stares almost everywhere we go.

Everyone (except Liv) is holding up one finger for Caleb turning ONE.

Schreiber kids with the birthday boy.

And all nine grandchildren for Bigdaddy and Grandma Hayes. From ages 1 to 10! (And I still have two other siblings that haven't had children yet.)

William, Brian, Joseph, Natalie, Noah, Ansley, Caleb, Claire and Olivia

My older brother Jonathan and I kept our families nice and even. We each have two boys and two girls. So, Jess and Matt, now that Caleb is one it's time to have triplets...one boy and two girls!!

We are here!

Sorry for the long delay in updating. We have had an intense few weeks. This will be lengthy.

I believe the last post was me letting you guys know we were approved to go on Brian's Make A Wish trip. That was on a Thursday. Friday a nurse came out and took some blood to check Brian's counts. That evening Fred, his parents and I were watching a movie and we heard choking and gagging sounds. I ran back to Brian's room to find him sleeping in a pile of throw up, choking and still vomiting. I rolled him over on his side and screamed for Fred who was totally unprepared for what he saw. We both were. Brian was still asleep as he was throwing up, repeatedly. I scooped him up and ran to the shower to rinse him off and he threw up in the toilet a few more times. Fred took care of the bedding as we both cried and prayed. We called the oncologist on call. We got the doctor that doesn't seem to concerned with most of what we present. I was SUPER frustrated when she said just give him Zofran and wait a couple of hours to see if that does the trick. At this point Fred and I were thinking about the underlying reason of WHY was Brian throwing up. We weren't so concerned with stopping it as we were concerned with figuring out what was going on in his little body. It was horrible.
    Fred and I had pretty much decided that if Brian threw up even one more time we would take him to the ER. We were praying that would not be the case as the girls ballet recital was the next morning. About 45 minutes after Brian's episode, Olivia woke up throwing up. The poor girl will probably need therapy in the future because of how happy her parents were when she was throwing up!!! Fred and I both just about did the happy dance and high fived each other as we realized this was not specific to Brian and LCH. We are assuming that the scallops we had for dinner did not sit well with those two. Maybe they had too much butter, or maybe B + O can't do scallops, who knows... Once they got it out of their system they were fine. We were VERY grateful that the on call oncologist was the doctor that isn't very proactive. We realize that in this specific instance it probably saved us a night in the ER and a possible day or two in the hospital.
   The next morning we headed to the ballet recital in the pouring rain. That would be the weekend Pensacola flooded. (June 9) I believe it rained 13 inches that day. Probably most of it was during hte girls recital! The waters were rising and things started flooding. The building on the Navy base where the recital was being held was so bad the hallway to the girls dressing room had two or three inches of water in it. They had to move the girls to a different location in the building.
     We loved seeing the girls dance and we all teared up at the Father/Daughter dance to the song Cinderella by Stephen Curtis Chapman. We made it through the recital, but Brian stilled smelled like throw up. It was very stressful as we were fearful that maybe it wasn't just dinner from the night before. I kept getting up and leaving the auditorium with him. We later discovered Brian's blanket is what smelled so bad, even though it was washed. I think it got caught in mattress pad so it didn't get to roam all around the washer and get a thorough cleaning. It was a relief, once again, to know Brian was OK.
   Our trip home from the navy base was crazy as we could not believe the flooding!!  We ended up having to take several detours as a lot of the roads were closed b/c of flooding. We were grateful to God that our house was perfectly fine. No water anywhere. Here are some pics from the drive home.

After we arrived home from the recital the Make A Wish representatives had a going away party planned for Brian at our house. We were all exhausted, but it was exciting to think that we might actually be able to make our trip two days later. We were getting excited about some Mickey Mouse time.

Brian was SUPER excited to see the party for HIM. (you can see his port bandage)

the kids table with the cake

the fun BRIAN balloons

It was also fun b/c cousin Caleb was there. He came with Uncle M & Aunt J to the ballet recital then back to our house for the party. I am sure they went all the way to Alabama to avoid flooded roads on their journey back to our house from the Navy base.

   Sunday we stayed home from church b/c the home health care nurse was suppose to come de-access Brian's port. Fred ended up having to call and ask if someone was coming out. Not too long after that a bolt of lightening stuck right outside our house and hit our pole blowing out our electricity. There were pieces of the transformer in our yard and on the street.

 It was during our six hours with no electricity that the nurse arrived to take out Brian's port needle in the dark. (and heat). It was so sad to see Brian's skin over his port. Out of the last six weeks he has had his port accessed (a needle in it) for FOUR of those weeks. When the nurse got this needle out he asked if it looked bent like it was when he was first accessed. It was not. I guess it got bent during the previous few days. He did complain about it hurting. That totally broke my heart.


   When we finally got our electricity back we realized we did not have cable, phone or Internet and one of our TV's was zapped when the lightening struck. We called (from a cell) and scheduled for an AT& T person to come out a week later when we were back from Brian's Make A Wish trip.
  
  We packed very last minute Sunday night when we realized that we might actually get to take the trip. Fred and I were still in knots the Monday drive down to Orlando. As soon as we got to Give The Kids The World and saw what we were about to experience through the week both Fred and I were overwhelmed with emotion. I don't think we really allowed ourselves to think we were going to get to make the trip. IT WAS AMAZING!!! I will do a post all it's own from that amazing week.

The kids in front of our villa. (after travleing all day)  :-)

   
   We got back Sunday evening (Father's Day) and we were instantly reminded we didn't have cable, phone and Internet. We did not realize how much we use all those extras. :-)

   Monday morning the AT & T guy came and rewired our house as all our cable wires were fried. It took him four and a half hours. Fred and I moved the enormous TV that was dead, out of the armoire (yes, that is how old it is) and replaced it with an even older TV (the first one we purchased ...it was made in 1999. We're really cool people. :-) )

   I have another post to write about a shopping experience from this particular Monday. You can read and see that stress levels were high as we don't have tons of extra money laying around to replaced old TV's. That will be my introduction into that post...not that high stress justifies sin, but I was completely humbled and God continues to chisel away and work in us to make us more patient, loving and self controlled. We will leave it right there for another post on another day. :-) Check back for the "Sports Authority" post.
  
  Wednesday we celebrated William's Birthday. He turned seven. Brian is counting down the days until he turns six.

  Friday was a well check for William and blood work for Brian. We got a call Friday afternoon that Brian's count were too low to receive chemo. It is being postponed another week and we are hanging out at the house hoping Brian's counts improve. Being neutropenic does not mean that Brian is sick or that he feels bad, but that he is extremely susceptible to germs and illness as he cannot fight it off. So, we are staying home and praying Brian's counts rise and he is able to receive treatment the week of July 2-6. B/C of the 4th holiday during that week he would do the same thing as last time. He will get five days of treatment in four, so the dose he will receive each day will be higher.
 
     If you stuck out through that lengthy post, congratulations! :-) We love you all and appreciate the prayers and notes of encouragement!! Please keep praying for Brian Robert.

Lots of Thanks!!

 I am totally falling behind on the thank you notes. Quite honestly, I am not sure I am going to catch up. Please forgive me and allow me to just send a shout out to the many people that have blessed our family. It has been so wonderful to know that the body of Christ is standing with us and we are not alone. We appreciate the prayers, e-mails, phone calls and gifts letting us know you love us. We are extremely grateful for all of you.

  Thank you for your sweet packages full of treats for the kids and gift cards for us to use during weeks like that last few. You have no idea just how amazing it has been and how much it has helped.

 Thank You to:

J and KASY Hayes ( YOU get a bold, girl!!)
Aunt Carol
Our dear church family from Saint Andrews
Aunt Crissy and her family
M, J and C Teplicek
D Hayes
The Beach family
D & L Morgan
A & A Morgan
S & L Scott
T & E Keys
S & L Johnson
The VanMeggelen family
The Cokers
C & C Swanson
S & F Swanson
J & S Andress
The Jinks family
R & J Young and family
F & B Skerratt
D Fouraker
J Fouraker
J & C Robinson
D & K DeVries
P & A DeVries
A DeVries
R & C Rowell
L & L Allen
R & M Branch
C & J Wilcox
K. Leamons
T & M Poole
T & A Lucas
B & J Daughdrill
T, D & A Willard

I am going to go ahead and apologize, as I am sure I have left someone off. Please know it is not intentional. I am typically pretty organized but when Brian is in the hospital, all organization of the thank you list goes to the way side. I try to rely on my memory, but that has proven to be loosing its effectiveness.  :-)

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!!

Sweet times

We've been talking to our children about painful times, difficult circumstances, God's love and His Sovereignty. Our kids know the Bible story of Joseph pretty well. So when Ansley got to thinking about God working all things together for our good and His glory she came to me said, "Mommy, I know that Brian is probably not going to be second in command in Pensacola, but..."


We read the following in church yesterday and it was very timely:

Heidelberg Catechism, 1563
Question 28. What advantage is it to us to know that God has created, and by his providence does still uphold all things?
  Answer: That we may be patient in adversity: thankful in prosperity; and that in all things, which may hereafter befall us, we place our firm trust in our faithful God and Father, that nothing shall separate us from his love; since all creatures are so in his hand, that without his will they cannot so much as move.


There is some good info on LCH. If you want to watch the videos and learn more about it click HERE.

Dr. Parmley describes LCH in simple terms. He says if you look at the LCH cell under a microscope you see characteristics of a blood disorder, characteristics of an auto immune disorder and characteristics of cancer. It is treated the same way you treat cancer. He considers it a cancer.

Legoland and Update

We spent the weekend with our dear friends that are like family and went to Legoland on Monday. We had a blast.
Friday night we went to a dinner theatre at our old church. Our friend is the music director for the youth choir and she did an amazing job putting together the entire evening. We loved it! The boys (particularly William) were captivated by the music.  They liked when the men played the best.

 Brian is a sweetie, but when he is done...he is done!! I wanted to capture a picture of the four kids and he didn't want to. The picture makes me smile. It's totally Brian when he is tired.

See, Daddy had to carry him back to the van.

By Monday Brian was rested and ready for Legoland. At this point he was still drinking like a thirst machine and peeing every thirty minutes during the day time. We stopped for Brian to go potty on the way to Legoland at least four times. It was an hour and a half from our friends house.



All four kids were excited when we saw the sign!!

The day begins...

Right off the bat we saw Darth Vador and R2-D2 made of Legos.

We also ran into some super heros. We saw a Lego pirate show, rode some rides and traded mini figs with employees. It was a great day. We are super thrilled that we went when we did.

Quick update, Brian has started taking two pills now, one in the AM and one in the PM and has a MRI scheduled for Friday.

At the Beach and update

On Wednesday we drove over to Port Saint Joe/ Mexico Beach Area and spent Wednesday, Thursday, Friday with three other families. On Thursday Aunt Jess, Uncle Matt and baby Caleb came over to go to the beach with us for a couple of hours. This entire trip was tons of fun, but stressful for Mommy too. Our typically two hour drive to Panama City was WAY longer because we had to stop every half hour to forty five minutes for Brian to go potty.
    We have been dealing with Brian's symptoms of Diabetes Insipidus for a few weeks and had a urine sample and blood work sent off last Thursday the 8th. I called Nemours to find out the results (b/c no one called us) and was told that the urine was normal and the blood work was not tested and I should bring him back in to get the blood drawn and retested. I assumed that since the urine was normal I wouldn't put Brian through anymore unnecessary poking and blood draws. I told the nurse if I was still worried in a couple of days I would call back, but that I was not going to bring him in. We were going to work on limiting Brian's fluid intake and see if maybe he has just gotten in the habit of drinking excessively. (What we were told last time we went through these symptoms in Dec. 2010) The nurse told me that she would check with Dr. Parmley (the doctor we are to see on March 29) and see if that was OK. If I didn't hear from her than it was OK to not redo the lost blood work and wait until Brian's next appointment on March 29th.
    I never heard from her. Assuming all was well with Brian and we needed to limit his fluid intake we continued life as normal just restricting Brian ALL DAY LONG. The requesting and begging for drinks did not stop. My friends even saw Brian lick the valve on a drink dispenser. We had a couple of gallons of pink lemonade or punch made at all times for the kids and the dispenser sat on the counter in the beach house. While we were hustling around getting kids taken care of Brian was sneaking over and licking the valve hoping to get a drop of drink since Mommy kept telling him one drink was enough.
   His frequent need to potty was a source of embarrassment too. He pulled his swim suit down and peed on the concrete next to the hot tub and pool. Not in a bush, or around a corner, but right there in the middle of the action. He peed at the beach two or three times. He was non stop.

We still had tons of fun and enjoyed the fellowship with our friends.

William and Brian had fun at the beach.

Brian's constant thirst didn't take away his silliness. He tried to jump in the picture with baby Caleb.

Florida is beautiful and we will treasure the memories from this time. It was humbling to Mommy to have her friends see the behind the scenes Schreiber's. Brian screamed and cried before bed wanting to go home and wanting Daddy (who wasn't with us for one night). When Brian gets in these moods and we are home I would send him to his bed, but since we were at a condo with friends I just had to hold him and rock him. Of course that made him mad and he was squirming and fussing. I looked like that mom that couldn't handle her own children, but I knew if I let him down he would hit someone or just go cause trouble. Ahh....

anyway, this picture is beautiful. It was a good time despite the growing suspicion that Brian is NOT ok.