We are exhausted from trying to have the most normal week ever or at least the most normal week since February! All things considered, a great week. Sylvie went to school for an hour on both Wednesday and Friday. We even spent the weekend at Adam & Cindy's place in LBI !
I don't know who had more fun at school, us or Sylvie. Granted she attended only for an hour but who's counting? After school on Friday, we rushed home an awaited Tracey who is Sylvie's physical therapist and makes house calls. This was our first appointment. I immediately like her better than the other physical therapists Sylvie has seen. It could be that our typical physical therapy appointment lasts about 5 minutes in which Sylvie is forced to stand up, sit at the edge of the bed or hold onto something. While she hysterically cries and says "I'M TIRED!" The end. On the other hand, Tracey spent a lot more time with us where she could see that Sylvie is plenty strong and even more so, stubborn. In fact, Tracey said we should NOT force Sylvie to walk since obviously she knows how to do so. Sylvie, essentially, is holding out on us. Shocker. Not. Instead we need to strengthen her core muscles so that when Sylvie does take that first leap of faith, it will be successful. Tracey lasted longer with Sylvie than any other medical professional home visitor! Sylvie even told Tracy that she can come back. I think it's because she had a bag full of My Little Pony's and even played a game of Candy Land with Sylvie. Sylvie has her own rules and basically, you just have to go along with it until she's sick of playing which is somewhere between 5 and 10 minutes. Since Sylvie's in the hospital this week, Tracey will come over twice weekly starting next week.
Having a routine like school makes it easier to reintroduce basic concepts such as eating and napping. Hopefully Sylvie can go to school again very soon so long as her counts are high. Music class too. Little Gym would obviously not work since she isn't walking. Not to mention, the kid is BORED and it contributes to her demanding to "do something," "go somewhere special" and about a million requests a day to go a choice of:
a). "The Hello Kitty Store...the big one...the new one..."
b). "The Art Project Store" which she now actually calls "Michael's Crafts"
c). "The toy store that has Hello Kitty" which is Learning Express
d). "The Book Store In Town" (Bookends)
e). "The New Big Book Store" (Borders, Ramsey)
I realize that a lot of this is just typical 3-year old behavior which is why we're now enlisting child psychology, rewarding and of course, shameless bribery. We are very conscious of Sylvie's unrewardable behavior. I do not want Sylvie to be one of those kids who as an adult, people say condescendingly, "She's that way because she was sick as a child." Let her be compassionate. Let her want to help kids. Let her want to build homes in West Virginia or a third world country for the needy. Or train to be in the medical field. Or be a professional skiier. But not spoiled rotten and crazy.
For those of you who think we 'make it look easy,' I can assure you that nothing, even on a good day, is easy with Sylvie for Michael and me. She agrees to disagree 100 percent of the time hence the 'word of the week: YES' and so forth. I need to remind Michael tonight once again that we are smarter than her. He felt a little beaten up today.
So about our big weekend! Cindy and Adam invited us to their place in LBI for the weekend. Adam's parents bought it in 1973 which is pretty awesome! We arrived shortly before them early Friday evening having listened to Sylvie bark at us for about 2 hours that she wanted to go home, didn't want to go to Aunt Cindy's, et cetera. I'd say that less than 5 seconds after we got out of the car, she marveled at the house and said, "This is just like our mountain house!" It helped that I stashed a Princess magic art project that I had pilfered earlier from my parent's house in the front seat of Blue car. While Michael unpacked the car, Sylvie and I got down to business until she crinkled her nose, looked up at me, laughed and said that her poop felt squishy. This could NOT be good. I will fast forward to say that for any child to poop up to their armpits is nauseating. For a child who has surgical dissolving tape across a healing incision that runs over 10 inches and another gauze pack covering a previous drainage tube incision, it's a little scary. We got down to business, cleaned her off and stuck her in the tub despite massive protests. When Cindy and Adam arrived, at least Sylvie was fresh and clean and had her first shampoo in over 2 weeks since it was technically the first day that Sylvie was even allowed to bathe or swim since her surgery.
Sylvie has a toddler crush on Adam. It's very endearing and cute. And helpful. Cindy's not chopped liver either. Sylvie LOVES them both and adoringly calls them Aunt Cindy and Uncle Adam. We all ate dinner while Sylvie watched Aladdin and gave Adam a play-by-play. Michael and I were a bit nervous putting her to sleep because of her middle of the night munchies and so forth. Our fear was confirmed around 3 am when Sylvie was wide awake calling for us. It took nearly an hour for her to fall back asleep which entailed me pretending to sleep next to her and Sylvie cradling my face in her tiny hands and putting her mouth on my nose just to check and see if indeed I was sleeping. I crawled back to my bed at around 4 am. Sylvie got up no later than 6:05 am. I told Sylvie that if she was good and ate breakfast, that we would go to the lollipop store which is actually the Pearl Street Market in Beach Haven. As we drove down Long Beach Blvd. and past Fantasy Island, Sylvie pointed at the Ferris Wheel and screamed with excitement. We were pretty thrilled with her enthusiasm. At Pearl Street Market, Sylvie grabbed a bunch of lollipops while we picked up breakfast pastries. We opened up a lobster tank but Sylvie declared they were all sleeping. Last summer, the guys working there took them out and let them walk on the floor while Sylvie and Sammy pet them.
We headed home where Sylvie & Adam graciously offered to watch Sylvie so Michael and I could go for a run. Adam then went surfing on his brand new long board and Cindy & I headed to Viking Village while Michael offered to take one for the team and chill with Sylvie. Later that afternoon, we headed over to an amazing toy store that fortunately had Hello Kitty and then back down to Fantasty Island where we went on the merry-go-round, played arcade games and Sylvie got to eat her signature mozzarella sticks and vanilla ice cream. A great day indeed! We BBQ'd later and had a great night. Sylvie barely slept however. When Adam would check on her, Sylvie would wave back. But at 3 am it was business as usual and at 5:24 am, Sylvie was up and angry. I flat out told her that if she woke up Aunt Cindy and Uncle Adam, there would be TROUBLE. We went out for a walk. No dice. We got in the car and stalked our friend Rich whose house was about a mile or two away. Sylvie was so nuts that I offered to trade Sylvie for their son Daniel and we made our way home. No need to spoil anyone else's fun. Sylvie made her usual demands (lollipop store, art project store) and I said, "No breakfast, no store." No dice. But then Aunt Cindy offered Sylvie eggs and I swear, Michael ended up feeding her 3 eggs. Then of course we had to go to the art store!
We had an awesome time; it was the first time we had traveled farther than Yankee Stadium since early February.
Tomorrow morning, Sylvie has an ultrasound at 8:30 am, lab work at 9:30 am at the Reuten Outpatient Clinic, 10:30 hearing test in audiology and will then be admitted for her 5th round of chemo. Annette called it 'countdown chemo' because we're nearing the end of Sylvie's toxic cocktails. We're thrilled and relieved. We're also exhausted from all this back and forth. In addition, Sylvie is definitely a little traumatized by some of the hospital stuff so I don't want to let her down either. I have solemnly promised "NO NOSE TUBES" and hope I can live up to that. I WILL live up to that. And to all our friends and family, we are really trying to not talk about medical things around Sylvie because she so readily talks about it on her own that we want to get back to kid stuff.
The last two rounds of chemo are the same 21-day cycles as the previous four rounds. Tomorrow, Sylvie will get Cis-platinum and Doxorubicin ("Red Devil"). These are two very serious drugs that cause nausea, vomiting, hair loss, electrolyte imbalance (i.e. Sylvie's crazy magnesium levels), kidney stress, heart problems, hearing loss, neutropenia. This is why Sylvie gets frequent echocardiograms and hearing tests. The other chemo drugs that make up Sylvie's treatment include 5-FU and Vincristine. I am hoping, as always, that Sylvie does not experience bad side effects. And to reiterate, if you or me got these drugs concurrently, we'd be dead.
So through all this, we are trying very hard to be normal. Do normal things. Even if it means carrying Sylvie all over creation and back, holding onto her for dear life as she insists in riding a horse on the merry-go-round when you know it's not a good idea. And pretending to be normal when people stare at Sylvie or at us for letting her eat lollipops and gummy bears at 8 am. They should only know the half of it!
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