Lost Some Teeth

Monday June 25 Brian lost his first tooth, naturally. He has had eight teeth surgically removed (all four of his one year old molars in Dec. 2009 and all four of his two year old molars in Dec 2010). This was his first tooth to wiggle out. We had a friend come over to watch the kids so I could run some errands.  She came since Brian was neutropenic and we didn't want to take him out to Publix, etc.. She and I were talking, and Brian walked up holding his hand out and said, "it just came out..."

I was floored. I didn't know what he was talking about until I saw the teeny tiny tooth. Since he grinds his teeth his little chompers are super small. Anyway, our older two children have lost multiple teeth and it has always involved some tears or fearful "NO! Don't try to wiggle it!" comments. Brian didn't even let on that his tooth was barely hanging in there. When it came out he was super excited about the idea of the tooth fairy giving him some money.

Here is the brave boy on Monday after his first tooth came out.

Just a couple days later on Thursday Mr. Brian came to me and said he was trying to pull his tooth out because it hurt. He had toilet paper and was really trying to yank it out. I asked  him if he wanted me to try and pull it out. He said yes. I pulled it out and he had no reaction. No cries, no hesitation, no drama...this boy has been through so much he is quite a tough cookie.

Here is the grinning boy on Thursday evening with two missing bottom teeth.

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.

PRAISE!!!!

We want to thank everyone for praying for our family, especially little Brian Robert.

We got a call today that the sensitivities came back and Brian's drugs are being changed. He will no longer have an infusion of Vancomycin every eight hours but will have Rocephin every 12 hours. He will be finished on Sunday and we were told that he is able to leave for his Make a Wish trip on Monday. WE ARE THRILLED.

Thank you for your continued prayers. Please pray that the infection  is completely gone from the port and that Brian will not have to have it removed. We will probably know the answer to this in a few weeks when he goes back in for his next chemo week. Or if he gets a fever between now and then.

We are assuming this is a different bacteria b/c the infection we were dealing with four weeks ago was resistant to Rocephin. This bacteria requires Rocephin. This makes us hesitant to leave Brian accessed for the entire week of chemo. Brian had been on treatment for two and a half years and has never had an infection in his port. The two weeks that we have left  him accessed for the entire week, he has gotten infections in his port. We are a bit concerned.

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.  :-)

We are home!!

Brian was able to come home from the hospital with home health care. This is basically a repeat of several weeks ago. We are giving him Vancomycin every eight hours through an infusion with a rental pump.
   We were suppose to leave Monday for Disney World for Brian's Make A Wish Trip, but that is looking like it is not going to happen. We have an appointment with Hem/Onc on Tuesday to follow up with blood work. I will let you know more as we find out but for now please pray that somehow we are still able to take Brian's special trip next week.

  Because home health care could not deliver our medicines to the house until the evening, Brian had to stay in the hospital to receive another dose of antibiotics in the afternoon. We ended up staying at the hospital until 5:30 last night. We were SO glad to get home.
  
   Brian had lots of time to kill and the day was long. One of the neat things the hospital does is let kids paint ceiling tiles to decorate the children's wing. One of the volunteers that plans activities for  the children came by and asked Brian if he wanted to come play in the play room. When we got down there he saw a stack of ceiling tiles all spread out and some paint (some kids had painted earlier in the day) and he said he would like to paint. The lady sweetly said yes. She got all the paint and brushes for just Brian. He enjoyed himself so much and was quite silly.

example of some of the ceiling tiles

more tiles

Brian, the artist, at work.

Mommy thought to add Brian's handprint, but it only lasted about two minutes before it got covered in paint.

Mr. Silliness showing off his work.

The final product.

Still here...

Brian is still in the hospital. Here's a quick update from last week for those that haven't seen the emails. Because of the holiday Brian's chemo week was Tuesday to Friday. The doctor adjusted the doses so that Brian received the same amount of chemo he would normally receive in five days, but this week it was given in four. Wednesday evening Brian was running a 102 fever with chills and throwing up. (day two of chemo, just like last time) we called the oncologist on call who told us to head to the ER. Brian's blood was taken to check his counts and some cultures run to check for the presence of bacteria in the port. We were told if Brian's ANC was above 500 he would be given antibiotics and allowed to go home. Thankfully that is what happened.

Thursday we went to chemo as normal. Thursday afternoon/early evening Brian did not feel well but was not running a fever and was not throwing up. Friday morning as we were getting ready to head to chemo we got a call that Brian's cultures from the ER were positive. We headed to chemo and saw the doctor to ask what we should do. He told us to receive chemo as normal and then Brian was to be admitted to the hospital. We have been here ever since. Brian has been receiving vancomycin and in between doses he has been given an ethanol lock.(alcohol in the port) We are hoping this cleans the port of bacteria so that it does not need to be removed. We should know more today.

 Thank you praying for our family. This has been very trying on our family. Both Fred and I are torn as we want to be two places (well Fred has the pull of three places as he has to work...) all four kids are ready for Brian, mommy and daddy to be home. We are grateful that Fred's parents are here. They came to visit and see the girls ballet recital. It has been a blessing to know that we don't have to shuffle the kids all around for several days. We are thankful they are getting some time with their grandparents and their grandparents are making sure to shower them with love and attention. Please pray that Brian gets to go home TODAY and that we don't have to have the port removed.

Sweet tired boy. Little bit of a reaction from the antibiotics

still tired and only wanting to eat tomato soup

playing in the closet

Day three and feeling better...checking out his meal

watching netflicks on the iPad

still loving the iPad

LONG...

     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.

Let's see...lessons learned...DO NOT ATTEMPT TO DO THINGS THAT ADD STRESS TO AN ALREADY STRESSFUL WEEK!!!!!!!

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!!

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.