The PET scan

                                       Brian had his PET scan at Sacred Heart this afternoon. He attempted it without sedation. They were fantastic and let him walk through what was going to happen and actually go see the machine before he was given his IV and injected with dye.  After given the dye Brian had to sit absolutely still for an hour. We watched Netflix on the ipad. The ipad is our constant chemo companion. Worth every penny!!

      

Brian "sat still" and did the entire procedure without sedation. I say "sat still" in quotes because I was in the room with him and felt like he was moving quite a lot. The tech said they got what they needed but we will see. :) 

We were proud of our boy for making it through the PET scan like a champ! Here he is posing in front of the machine. Of course blankie was with Brian too. Sir Blanks A Lot, Blankie, Kee-Kee- it has had several names through the years, but has always been within arms reach of Brian. I often think about my Aunt Carol stitching Brian's blanket together many years ago. She had no idea that the baby blanket she was making for her precious great nephew would be such a source of comfort and stability and would travel to so many things. Well, maybe she did. She saw me love on my Aunt Carol blanket for ten years. My blanket was so loved it was really shreds of yarn. Aunt Carol made me replacement blanket when I was a teenager. I have it displayed in Olivia's bedroom and my original blanket is in a drawer.

 Blankie is more than just a lovey. It kinda makes me want to learn how to knit (again) so that I can carry on the Aunt Carol tradition. She tried to teach me how to knit. My sweet Aunt Carol came over to my house a couple of weeks after Brian was born and spent a few hours with me attempting to teach me how to knit. I "got it" but being that I had a newborn and two other toddlers there wasn't much time for knitting. I don't really remember how to knit now. Anyway, Blankie and Brian made it through a PET scan without sedation!!   

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!!

Please Pray

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

Update Nov. 2 2012

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

 

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

 

 

 

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

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

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

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

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

 

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

 

 

 

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

 

Unnecessary drama.  

 

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

 

 

 

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

 

 and pushing him on back...

 

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

 

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

I thought this one was pretty creative.  

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

Another Week Complete

 

 Another week of chemo is behind us. It was a rough one. Brian fought a lot on Monday when they had to access his port and today when the needle was taken out. Brian got sick on Tuesday, day two of chemo, and Fred had to drive to Orlando (and back) on Wednesday for a required one hour training. We've had a long week.

 

 We also learned on Monday that Brian's counts were at 720. They are suppose to be at 750 to receive chemo but the doctor said it was close enough, so we went ahead with treatment. However, we can expect Brian to be neutropenic in the coming days as the chemo starts to take it's toll. (Remember below 500 is neutropenic.) Because of this we will not be doing much outside of the home the next few weeks.

These things have become a part of our norm. I'm afraid that we have gotten "too good" at juggling all we have going on. Perhaps we don't let everyone see the pain and difficulty as often as we should. Or perhaps we don't even know how to answer questions like, "what do you need?"  

 

I had a whole long post typed up but just deleted it. All I will say is that God has been working mightily in our marriage and in our parenting as a result of all we have going on. For that we are thankful and we do see the good (Rom 8: 28). Just because we see the good, and we are blessed by God's work in our life, that doesn't mean that we don't struggle and have difficult days. This week has been difficult. 

 

Please keep praying for our family and for precious Brian Robert. He has a MRI on Wednesday of next week. Those are always done with sedation.

 

Here are some pictures of Brian from Tuesday when he got sick. We are thankful that it is just day two that completely knocks him out.  

 

At it again

We're at it again this week. Brian started chemo yesterday. His appointment wasn't until 1:30 PM, so we did some school work in the morning. (Typically we don't do too much during a chemo week.) While I was working with Ansley and William, Brian and Liv were drawing and coloring. I took a picture of Brian's art work because it made me super sad. He spent the entire morning consumed with thoughts of chemotherapy. The picture on the left is Brian sitting on the hospital bed playing with the iPad. The picture on the right is the pump on a pole. The huge thing coming out of the pole on the right side is the tubing that attaches to Brian. He drew it huge because, in his mind, lots of medicine goes into him.

 

 

But you can see, even though he was describing chemo and saying, "I'm scared", he has a huge smile on his face. He's such a sweet boy!

Yesterday was draining. Brian fought a bunch more than typical and he cried and screamed. We ended up having to physically restrain him. Brian has a look of terror and disappointment right after his port is accessed that just crushes us.

Please pray for Brian this week as he receives his chemo treatments. We pray every day that these treatments and this protocol would work. 

Indiana Jones

 

Brian LOVES Legos and gets fixed on one set. He plays with that theme over and over all day long. He uses all the Legos that he and William share to build whatever the story may be for his favorite theme. Brian has loved Indiana Jones since February. In fact when he was interviewed for his Make A Wish trip he said he wanted to meet Indiana Jones. They granted his wish and Brian had a great experience. (I still need to post all the pics). I was reminded to post the following picture of Brian and Indiana Jones when I found this drawing on my computer desk last week. Our kids draw pictures everyday and everyone is their new favorite. But this one, yes, this one IS a new favorite.  Brian drew Indiana Jones.

 

 

Brian and Indiana Jones.

When Indiana Jones found out Brian was on his Make A Wish Trip he gave Brian a hat. It's special, you can't go buy it in the gift shop. It is the hat the actor wears in the stunt show. Brian felt like a king. It was great. So of course for Brian's birthday he wanted Indiana Jones Legos. We searched and realized they no longer sell them in the stores. We had to search on E-bay and my, oh my, are they pricey. I must say though, he is one sweet and grateful boy.

All is Well

 Thanks for praying for Brian last week. He did get sick on day two (as always), however, we didn't have to go to the ER. That's a huge blessing.
   We had our AC on our van repaired. We are so thankful that Fred knows a good mechanic that we trust.  We aren't out an outrageous amount of money. I am pretty sure he gave us a break on labor costs because he ended up having to repair a part he replaced last summer. The warranty expired at 12 months, but the mechanic still felt bad that it went out so quickly. Very awesome. God provides.
    Brian's counts will drop over this coming week and a half. Instead of having three weeks to recover he will only have two. I guess they are trying to get him back on track after missing a week b/c of the hurricane. Plus, if they didn't try to "make that time up" he would be due to receive chemo the week of Christmas. That's not cool, so we are thankful that they are looking at things like that. We are concerned about his little body so please pray that he is able to handle chemo sooner than his body is used to.
  All is well in the Schreiber house. Thank you for loving us and praying for us.



Here are some cute pictures of Mr. Brian and his bestie and older brother, William.

These two always have tons of fun together, but when it comes to school I typically have to separate them. They are only a year apart, so there are some things that they do together. William gets SO mad if I am asking him a question and Brian yells out the answer. God has just gifted Brian with some smarts. He has never really "done" school, but he has just absorbed everything he hears Ansley and William learning. This year Brian is in Kindergarten. Yesterday I attempted to be fun Mom and we did our spelling and phonics outside. I made boys sit back to back so they couldn't see what the other was writing.
   For those of you that are curious what we are doing, we are using our All About Spelling curriculum. I LOVE it. In this picture you see me reviewing with the boys. I say a sound and they write down what they heard. Then we mix it up and I say a letter and they tell me the sounds that letter makes. For exampe, C says /k/ and /s/. They then say the rule that C says /s/ before e, i or y.

These boys are just too cute!!!

Chemo 9-5-12

Brian started his chemo week yesterday. In true Schreiber fashion the week is not without some drama.

 

 We started the day early as we had to get Brian's blood work done before we headed to Classical Conversations at 9:00. Because of the holiday, our Monday school met on Tuesday this week. We typically do blood work the Friday before a chemo week, however, this past Friday, in an effort to complete school assignments before we headed to the lab, we ended up not getting blood work done. I didn't realize the lab closed early on Fridays. Oops. That's what I get for making school a priority.  :-)

 

So, Tuesday we headed to the clinic at 8:00 AM to get some blood work done, then went to our CC day. After school we headed back to the hospital for Brian's doctor appointment and chemo at 1:30. Several days ago William was sick and his cough has lingered (mostly at night), so we made an appointment with his pediatrician for 3:30. We wanted to make sure there wasn't anything we should be doing for William and didn't want to put it off another day. As it was, we had already put it off thinking he would get rid of that cough soon enough. William hadn't been sick the last few days, but Sunday night and Monday night were not good nights of sleep for William as he was constantly hacking and coughing.

 

Tuesday afternoon at 1:30 we saw the oncologist, got Brian checked in on the infusion side, had his port accessed, then waited. When the chemo drugs still had not arrived by 3:00, William, Olivia and I left Fred, Ansley and Brian at the hospital and headed to the pediatrician's office.

 

Olivia was a goof and having a great time in the waiting room. William was having a good time taking pictures. I felt silly sitting in the sick waiting area because clearly my kids were not sick. :-)

 

 

 

When we got back to our room we waited a while. The doctor was busy and since they were working us in I didn't mind the wait. Olivia, William and I had read about seven books when Olivia wanted to sit on my lap. She sat quietly at first. I assumed she was tired from the long day. Then she started getting whiny and fussy. She felt like dead weight and was hot.

That's when the pediatrician came in.  I told her we were there for William's lingering cough, but in the last thirty minutes of waiting Olivia had gotten sick! Sure enough, Olivia had a temp of almost 102. I am sure she has whatever William had.

 

 

 

We love our pediatrician and she took good care of both kiddos. We got home just a few minutes after the other three. Brian did well through chemo and was excited for us all to be home.

 

 

With sick kiddos, Fred worked from home while I took Brian to chemo at 8:00 this morning. The pharmacy didn't have the chemo ready so we played until it was ready a little after 9:00. We were home by 10:00 and Fred went off to work. The drama of today is that I have come to grips with the fact that my AC in my van is out. It has been faulty for the last several weeks, working off and on at random times. For some reason it decided to bite the bullet and quit putting out cold air altogether. We will take it in and get it fixed soon, but this week we need our transportation. Thankfully it isn't too hot. It was kinda nice to drive around with our windows down today.  

 

 

One of the things that Brian did this morning to pass some time while waiting on the pharmacy to get the chemo ready was draw pictures. There is a golf tournament next week and I believe it is to raise funds for Nemours. I was told they like to give pictures drawn by the patients to those individuals that donate money. Brian was asked to draw a picture about golf and to write his name and age on it.

 

This is what he came up with:

 

 

It was so adorable. I was so proud. When I told Brian that Miss Erin (the Sacred Heart employee that asked him to do it) would love the picture he looked at me and said, "Nope. This isn't for her, this is for Daddy."

 

We're going to have to get it framed for Daddy. It's a special picture. So, I asked Brian to draw a different picture we could give to Miss Erin for the fund raiser and he drew the picture below.

Sweet boy!!!

Please keep praying for him. This is the dreaded day two that always makes him sick. We are praying that if he is going to get sick it will be in the next few hours so we can go back to the clinic rather than the ER.  :-)

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. :-)

And Now He Is SIX!

(These are poor quality b/c these are pictures of pictures. I didn't want to tear our scrapbook apart to scan the pictures.) 

The newborn Brian Robert with excited Daddy and Mommy.

The Schreiber crew on Aug 10, 2006.
Ansley, 31 months old, William, just 10 days shy of 14 months, and Brian, a brand new babe.

 One day old and heading home.

One Year Old

Two Years Old

Three Years Old

Four Years Old

Five Years Old

Six Years Old