Long weekend. A group of us went camping on the bluffs of San Onofre State Beach, right next to the two nuclear reactors that look like boobs. This was the family's first real camping trip and it pretty much turned out like what you see in the movies. The campground did have bathrooms with flushing toilets, but the showers only had cold water. The campgrounds were also less than 50 yds from the train tracks, so we were awakened every night by mile long LOUD passing freight trains that came rumbling by at 9 pm, 11pm, 1am, and 3am. And when the trains aren't going by, you'd constantly hear the sounds of the cars and trucks on the I5 freeway, which was 100 yds away. Since the beach was way down below we had to take a long steep slippery trail down the bluffs to get there. Once on the beach, there are only little spots of sand. The beach was mostly covered with large smooth rocks. The water was cold and it was overcast much of the day (Hilary put sun tan lotion on the girls, but me being of darker complexion didn't bother, I was too busy fishing, besides it was overcast -- that turned out to be a big mistake). The hardest part about going to the beach was not just the walk back up carrying our beach stuff (blanket, chairs, fishing gear), but carrying Marissa, who has perfected the art of looking really tired and pathetic. Shoulders slumped over, arms dangling straight down, feet dragging, and a sad tired look on her face. And when we asked her how she is doing, she would just pointed sadly at Uncle Mike. And when Uncle Mike finally gave in (sucker!), she ran and jumped into his arms, and then from his shoulders, she looked back at us and gave a biggest devious smile - man, the boys better watch out, she is learning quick. Thankfully Lauren hates being carried, it's sad to say this, but she has gained so much weight, carrying her up or down would be tough. Btw: I know I complain about her weight issues a lot, but we never mention anything about her weight to her. We never want her to feel self conscious. Fortunately, she can walk forever. I think she has learned to appreciate the freedom and independence of walking from the days of her tough chemo when she was too weak and sick to walk and was confined to her bed, a stroller and/or a wheelchair.
Late Saturday afternoon, my friend Bill and I thought we'd go down and do a little fishing, and also pick up our stuff (cabana, towels, wagon) that we left there when we all came up for lunch earlier in the day. On the way down, wearing my flip-flops, I stubbed my big toe on a board. When I looked down I could see this grey looking flap sticking out from under my toe. My first thought was, don't let that be a piece of skin, sure enough, it was. When I looked, I could see a bright red circle with blood beginning to well up. I had tore a quarter size chunk of flesh from my foot. Since it was on the bottom of my foot, I couldn't walk. We radioed the camp, asking if someone would bring down a first-aid kit, all I could hear was laughter on the other end, and the words "yeah, right". Nobody wanted to make the hike all the way down the hill to save me. But luckily, Bill, "a true friend," hiked back up to get a first-aid kit. Of course, Nurse Tina who came camping with us, left Saturday morning, just like when we're in the hospital, where are the nurses when you really need them? JUST KIDDING. After patching up my own foot we continued down to the beach to retrieve our stuff and do a little fishing (since we were down there). That was another mistake, my wound filled with sand, but catching that small perch almost made it worth it.
On Sunday morning, as I crawled out of my tent in the dirt and mud, to a light rain, my right foot throbbing, my left knee still sore from the accident a couple of weekends ago, my back sore from sleeping on a rock (the air mattress we had only had room for the girls which includes Hilary), my shoulders stinging since they were totally sunburned, tired from having had no sleep because of those darn trains, I looked over at my friend Daryl stepping out of his 35 ft. luxury insulated RV (the kind of RV that you push a button and stilts come out to lift it so that it's level), drinking his coffee, wearing his robe and slippers, newspaper tucked under his arm, sheltered from the rain by his awning, looking refreshed having took a hot shower before he went to sleep in his king-size bed, I couldn't help but think maybe one day….
After packing up, which was a pain since everything was muddy from the light rain, we stopped by the McGowan's to shower and tidy up before heading to Los Angeles to attend the Celebrate Life with HOPE event honoring cancer survivors at the Paramount studios. It was awesome. They had games (the kids won every time of course), food (from local eateries), information booths and Disney Princesses (which surprised me, since we were at Paramount Studios). Jessica Simpson performed. I took a bunch of pictures of her, and when she started singing, I realized I was taking pictures of her skinny blond back-up singer and not her. Oops. We only had one bad moment. Lauren and Marissa wanted to go on a two-story air filled slide. Marissa, being the little monkey she is, flew up the ladder, but Lauren got stuck. I had to go up and help her. Once at the top she freaked out. It was steep. So I went down with her. We started going sideways, I ended up rubbing against the sides all the way down and ended up with a this huge nasty Indian burn down my left arm that hurt worse than my torn-up foot. It took a little while for Lauren to calm down. Marissa on the other hand wanted to go back up. The best part of the event was that we got to see a lot of nurses from the oncology floor of the main hospital. Don’t get me wrong, it was great to see the nurses from the day hospital that were there, but we see them every other week. The only time we see the other nurses from the main hospital is when Lauren is admitted, which she hasn't been (knock on wood) since Nov. '08. So that was really nice. And a lot of them have only seen Lauren bald.
So that was our weekend. Glad to be back at work resting. While it may have sounded like camping was no fun, it really was. But most importantly, the girls had a blast, and that is the only thing that matters. It was great family quality time. It was nice, sitting around the camp fire talking and roasting marshmallows. In fact, we're already planning our next camping trip (but this time we'll be better prepared, especially after learning a lot of tricks from Daryl, who goes RV camping at least once a month. The next time we won't bring a month's supply of food and we'll pre-make a lot of the meals).
Other stuff:
- We lowered Lauren's Decadron (steroid) to 3 mg a day from 3.5 mg. Lauren's speech seems a little slurred, but we're not sure if this is because she is extra tired from the long weekend. We're keeping a close eye on her. We've been slowly reducing her dosage every two weeks. Normally, the rule of thumb is to reduce the dosage every 3-4 days. This is usually sufficient for the body to react and show symptoms that we're reducing it to fast. But we're being extra cautious.
- Lauren's next MRI is scheduled for Aug. 5th.
The Nihei's: Our Story
On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
Tuesday, June 9, 2009
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