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.
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| Brian was SUPER excited to see the party for HIM. (you can see his port bandage) |
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| the kids table with the cake |
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| the fun BRIAN balloons |
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| 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.
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| 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.
