There are some things in life that are just universally pleasurable. To be included, but not limited to, in the aforementioned group are freshly washed sheets, when you switch radio station just as a favorite song starts, hot showers on cold days and BUBBLE WRAP. I truly have yet to meet an child or adult that doesn’t get some sort of amusement out of popping a piece of bubble wrap. In case you’re completely ignorant of the one of the cheapest forms of useless fun then you have all my sympathy. Whenever a box shows up in our house and it includes shipping wrap, my kids go nuts, I get a little giddy, its a good day.
Peyton slept in this morning, cuddled on the bed in her footie, zipped-up jammies (the kind I’m always a little jealous of when it gets chilly), and I left her there while I got Nathaniel and Rachael off to school. When I got home, she was sitting in the living room, eating a powdered donut, watching Dora the Explorer with a big piece of bubble wrap in her lap. Can I just say, this is a three year old utopia! She popped it with her fingers, she popped it by jumping up and down on it, she even popped it with a tricycle…..staring intently, but grinning like a fool with each pop. She shared a few bubbles with me, but quickly snatched it away before I got too carried away.
We have a big weekend planned. Tonight, the Children’s Cancer Society is doing Parent’s Night Out. They Armwood High Honor Students volunteering to babysit and occupy the kids for a few hours so parents can go out and have dinner or see a movie or get a quick motel to sneak a nap! The possibilities are endless. Peter and I were planning to go and meet with Adelaine’s parents after they dropped off their kids. Unfortunately, Adelaine went into the hospital yesterday with a fever and a painful ear. As with us, it’ll be minimum of 72 hours admitted. I’m disappointed that we can’t do something with them, but so concerned for Adelaine. Hopefully it will be a simple ear infection that they can treat with antibiotics. Please add her to your prayers for a full and easy recovery from whatever is happening in her little body.
So, Peter and I will take advantage of the free babysitting and try to figure out what to do with ourselves, childfree for 4 hours. We’ve been known to get pretty wild and crazy on these rare occasions. Trips to Wal-mart, a jaunt through Khols, usually a meal, but sometimes we get a real wacky idea and just head home to get things done that are hard to do with kids actively negating all your work. But tonight!! Tonight we must head into Tampa to get our babysitting, therefore we cannot go home and clean….we don’t know where anything is….we may spend the majority of the time arguing about whether to stop and ask for directions. I have no idea, but as most parents know, the big thing is to just have a few precious moments where you and your spouse can talk uninterrupted, can reconnect and stock up on togetherness that will have to get you through til the next time you have no kids. And if you have to do it at Wal-mart, who’s to say that’s not quality time?
Back to our busy weekend, Nathaniel is meeting his Big Buddy Mentor Charlie for a trip to Busch Gardens. They’ve been pretty excited about this trip and Nathaniel’s practically quivering with glee at the thought that he’s tall enough to get on the Sheikra. All the kids love roller coasters, but he’s my hardiest thrill seeker. That same day, Rachael is going with her Grandma Sharon to an art museum. I’ll be interested to see how long that lasts, I know it would make me nervous to take someone as bounce-alicious as Rachael to a sculpture exhibit, but Grandma’s got it together pretty good. Rachael will love the special “me” time and Grandma will get to spoil her rotten. Poor Peyton is stuck with the fuddy-duddy old parents, her ANC is down in the 200-300 range, well below the 500 minimum for partying. In fact, the only reason we’re taking her to the Parent’s Night Out is because it’s other cancer families who would never dream of bringing a sick child along. It’s a nice little safe haven. Pete and I will try to think of something fun to do with her, maybe a park outing is in our future.
The CCC provided us with 3 tickets for Sunday’s performance of Stars on Ice at the St. Pete Times Forum. I’m pretty jazzed about that, Rachael and Nathaniel are moderately excited and again, poor Peyton can’t go.
This morning I was feeling down. Adelaine’s mom, Angela was on my mind. She’s been having a lot of conflict with the clinic that they go to in St. Pete, she’s having problems in every way you can imagine and she’s frustrated and worried about Adelaine’s care. I’m so worried about this situation because you have to have a good relationship, or at least good communication, with your oncology team of nurses and doctors if you’re going to have faith and confidence in the decisions made for your little one. I’m just praying that the conflicts are resolved so that Angela can concentrate on the one thing that matters, keeping Adelaine well.
I am so thankful for the group of people who take care of Peyton at our clinic: our nurses Cindy, Teri, Louise, Maria and Nancy; our doctors, Dr Kerr and Dr Ayala; our social worker Kathy; our child life specialist Kyleen; all the other staff, Diana, Marcy and Shawn; and the volunteers who dedicate time to making clinic visits more fun and less frightening. These people are amazing, they give so much of themselves and have made our clinic experience better than I’d ever thought they could be. They bring the fun into a completely non-fun time, they bring smiles and laughs to Peyton’s face every time (well, maybe not every time, but we don’t count the steroid phases).
Kyle Chubb is also very heavy on my heart. His relapse has just stirred up a lot of fear. It goes back to the fact that remission is not a permanent thing, cancer has no definites and that’s frustrating and scary. It’s just so….ARG!….horrible to drag your child through chemotherapy day in and day out, to go through the whole experience and then to know it’s failed. How can this not work? We did everything we were told. We followed all the rules, took all the medicine, we did all we could…..and yet it can fail. I don’t know the exact plan of treatment for Kyle, but from the discussions I’ve had with the docs and nurses about relapse treatment, it’s so much harder than the original treatment. This just feels like a tightrope walk between killing the cancer and killing the child….I know that it’s a better chance than he would have had in years past, but it’s just not good enough.
I fear for Peyton, that she’ll get through this treatment, only to relapse, develop a different cancer, grow brain tumors, have liver, heart, kidney problems down the road, learning difficulties, or even the seemingly shallow fact that her hair might not come back in the way it used to be after her radiation. I’m afraid that we’ll never get a normal life back, that Nathaniel and Rachael will always have to be the understanding siblings, that Peter and I will grow apart from the stress and strain of it all. Sometimes the fears are less and sometimes they eat at me until I can’t sleep (I wish I could say I can’t eat, but apparently that coping method is completely beyond me).
But my fears are soothed by the good that comes from all this. I see huge compassionate hearts in Nathaniel and Rachael, they have a special ability to cope with the rapid changes that happen, they keep it real for us. Peter and I do find time together, we find ways to connect and we have to make the most of it, treasure that time we might have taken for granted. I am reminded constantly that I have the most amazing family and friends, who are there to comfort, laugh, keep my spirits up, pray for me, pray with me, encourage me and inspire me. And most importantly, I have the Lord’s comfort in my heart, and that’s especially important to me, because I’m not one that’s always accepted that in my life. I’ve turned away from God time and again and refused to believe that He has any say so in my life. When bad things happened, it was to be dealt with my way, and if something good happened, why should HE get all the credit? My most constant lesson throughout these past few years, and I’m sure until I die, is that bad or good, He is the reason for all that happens in my life. It’s my privilege to rely on him through it all and know that His will is being done, whether it’s what I would have chosen or not. It’s my responsibility to shine that message to everyone else.
This posting has become a small novel. Frankly, if you read it all I one sitting, I hope your butt isn’t killing you! It’s been said to me that Peyton’s site makes a lot of people laugh when they’re not sure they should be. Please laugh with us! You can cry with us too, but please, always laugh with us. It’s funny, my kids are a riot, our life is pretty laugh-worthy some days…..so feel free to chuckle at the things that we write about, to share them with others, to remember that laughter is an extraordinary gift that God gave us. Let’s enjoy it!!
f.r.o.G.t.g.r.o.m.t.c…..fully relying on God (to get rid of my typing cramps)
—-Anissa
