Friday, June 29, 2012

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.

Sunday, June 24, 2012

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 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.

Thursday, June 7, 2012


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.

Tuesday, June 5, 2012

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.

Monday, June 4, 2012

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