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Great Friday!

4/19/2014

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I guess the best place to start is the beginning. 5:30am yesterday, for the 3rd time since we tucked her in Thursday night, Faith's voice rang through our resurrected baby monitor, "I have to go potty". And the day began. We showered, got dressed, and helped her hop slowly downstairs. Chandler was out getting donuts as a special treat to share with the clinic staff on this momentous day. Then, the damn dog started barking. Nothing unusual, but he didn't stop so, I went to see what had him all fired up. A white limo, Anne, Rich, Adam, Ashley, my mom and sister, and a gaggle of sleepy-eyed, one sock on-one sock off, bed-head neighbor kids! NO WAY! I swallowed my emotions down. This was gonna be a long day and water proof mascara can only take so much. I don't know how we got so lucky to be blessed with these angels we call neighbors who have become our friends, but we did. They all pitched in, 13 ways, to send us off in style and, as Rich pointed out, bring us home! This was too cool not to share, so we loaded the neighbor kids up in the limo, gave them some donuts, and pretended to drive to Rocky Point. Fun!

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The ride down was quiter than I would have suspected. Maybe we were all thinking about what lie ahead, but probably we were all just pooped. It really had been a long week and it was relaxing to be careless passengers in a nice ride. We arrived at the clinic to find that Faith's infusion chair had been decorated with balloons and a picture she had been working on to illustrate particular moments in her journey. Uncle Scott stopped by with a breakfast treat, the grandparents from Missouri stopped in, and Nabisco Greg and his crew came! They had games, treats, and Stuffy. Kady and Faith helped to show Stuffy from room to room delivering treats to everyone until Faith got too tired. Part of her premed protocol is Benedryl. I hate that stuff. It's such a party-pooper. It always takes fun, smiley Faith and leaves sullen, tired, snappy Faith instead. So, she rested while the last prescribed chemo pumped into her body and Kady and I continued to help our Nabisco friends out. It really lifts me up to see the faces of kids and adults when a life size stuffed Oreo walks up to them. How can anyone in their right mind not smile at that?!? I hope Nabisco continues to visit the clinic after we are no longer required to be there. Hint hint ;)

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The bag was almost empty. So close. Wait for it, wait for it. The swirl of emotion in our area could have started a funnel cloud. It seems so counter-intuitive, but there was equal parts happy, sad, joy, sorrow, a healthy dash of fear even. What if? So many of those. I've been asked several times over last few days, or more precisely, told how happy I must be. This is the analogy that best comes to mind. Imagine that you have a large sum of money due for taxes. Sucks, but for whatever reason, you do. You aren't sure how you are going to come up with the money initially, but you work it out. You take some from savings, you give up some unnecessary fun expenses and then you sell a special piece of jewelry and come up with the money. You did it! You reached your goal. Are you happy? Not exactly. Relieved is probably a better word. We've bought some time until next tax day. I said with conviction as I left the clinic that we are never doing that again. NEVER. Maybe if I say it enough and believe it enough, it will be true. But...

I hugged Allison and Kim. Kissed their cheeks and told them I loved them. I do. They, along with many others, have taken care of our baby. They helped make sure she lived, but they've taken care of us all. There is so much more than administering medication to their jobs. They are comforters of tearful, terrified moms. They are entertainers of bored sisters. Best of all, they are the very best ego inflaters of bald 11years old's and tired, weary-looking moms. Faith is so loved and so much the center of attention when she is there that I know she will be a bit depressed when it's gone. Thankfully, Chandler and I have grown to be better, more attentive parents after this chapter in our lives and we will not let her deal with it alone.

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We got into the limo spent. Tired, physically from the clockwork interruptions out-patient fluids bring, but more so emotionally. It really ended up being a wonderful gift to not have to drive home. I worked hard all morning to keep the waterworks at bay, but exhaustion took over. I am grateful for the strong shoulder I have to lean on. Chandler has never made me feel bad for being emotional. I tried to apologize for my struggle accepting our cancer. At first he said "it's ok", but then he corrected himself. "There's nothing to be sorry about." We compliment each other nicely.

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Balloons. Lots of them lined our stairs. 43 happy faces and 5 green stars. Green's her favorite color and her moniker at PCH is Smiley Faith. "Who did this? Who's been in our house?" I asked Chandler. "Jaime did it...I asked her to". Waterproof mascara, that's all I have to say. How lucky am I, but even more, how lucky are they. I didn't have that kind of love, adoration and devotion from my dad. I am envious in a lime green way. Again, I am in awe of the lengths our friends will go for us.

I used to feel like I needed to compete with Chandler's thoughtfulness. I failed to mention that he had another custom CD made for our last ride down for chemo. It brought me to tears and I gave him the bird for it. But, I realize this is his gift. He doesn't think less of me for not coming up with special gifts and gestures, at least he better not. He provides the colorful pictures in our story and I write the words.

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Wendi, Dan and the kids were arriving soon. Kady had a birthday party to get to. We has to get groceries for tonight. Life goes on you know. No time to ponder and wallow in emotion, we've got shit to do! After running here there and everywhere, I was just about to pour a glass of wine and settle in for a nice visit with the family when "mom, did you remember to get my ice cream cake" asked Faith from the couch. Her sister and cousins were playing outside and she was attached to her backpack of fluids watching her iPad. Shoot! In my former life I would have apologized and promised to get her ice cream cake tomorrow, but, things are different now. The child asks for very little even though a lot is asked of her. I grabbed my purse and my keys and headed for 31Flavors. "I'll call you when I get there to let you know your choices". She opted for the strawberry flavored ice cream with vanilla cake, appropriately shaped like a strawberry (the food she most anticipates savoring again). Before I left, Faith said to not bother writing on it, but the lady asked. Based on the look on my face, she pushed. So I had her personalize Faith's cake. She returned from the back room with my newly improved ice cream cake in tears explaining that she had had a very long hard day. Based on the look on her face she was humbled to put her own newly insignificant troubles behind her. I didn't mean to do that, really!

We shared that cake last night, Wendi, Dan, Katherine, Ryan, Chandler, the girls and I. We hadn't planned to make it a ceremonial thing, but it evolved that way. Faith lit the center candle. We all took the auxiliary candles and lit them off of the center candle. Each of us shared our own personal worst moments of the journey. Then, with good advice from my niece to not spit (Katherine, bless you for saying it out loud), we ALL blew them out.

Good bye cancer. Let's close this chapter.

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The Beginning of the End

4/14/2014

1 Comment

 
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Today is the first day of the last round of chemo! It's the beginning of the end of this leg of our journey. Our journey isn't over, far from it. We've just finally come to the fork in the road. Thankfully, we get to take the path towards continued recovery for Faith, learning how to walk again, rather than the alternative. We've known of kids whose journies have ended and now their families have to learn how to go on. Those stories rock us to our core.

So, this morning we all were buzzing a little. Well, everyone but Faith. She seems very unaffected by this huge milestone. Normally her apathy would really irritate me, but it's what's gotten us this far. I can't be thankful that she never cried for hospital admissions or chemo rounds and then expect her to be ecstatic this morning. Truthfully, I can practically count on one hand how many times she's cried. That Friday evening when we took her to the hospital the first time she cried the whole way. We tried to cheer her up with French fries and soda, but eventually gave in and just left her alone. The next was when we had to give her the post-chemo shot at home, in her bottom. Chandler and I were dumbfounded that she made it through the biopsy surgery and the port placement without so much as getting misty-eyed, but this shot sent her into hysterics.  Another time she cried when we told her she would lose all of her hair, but when it actually began to fall out, not a tear fell. She's had a breakdown about missing a birthday party and then the Demi Lovato concert, but that's pretty much it. One thing is for sure, she will be sad when we leave the clinic on Friday. She won't cry, that's not her way, but she will silently mourn the apparent loss of her friends at the clinic. We'll be back, more than I think Faith realizes, but they won't be long visits where she can be the center of attention for the better part of the day, the week really.

This morning, Kady was jabbering away about how excited she is for the end of chemo. She listed all of the foods that she will be able to eat again. That's been a big deal around here. Both girls are thrilled to be able to enjoy fresh berries again. They want to eat at Subway and Taco Bell, silly, but they are kids. I think Kady is most thankful that she can worry less about her sister. She worries a lot.

When we first started they warned us that we would be wary of the end. Nervous that maybe we didn't get it all. Fearful that if we stop now, Faith might get sick again. I am terrified that Faith will get sick again. So much so that the thought of it makes me feel physically sick, but I'm done with chemo. If it hasn't gotten it by now, then, well, I don't know. BUT, I do know that I am DONE. I no longer wish to poison my daughter, rendering her body defenseless against common germs. I am so tired of seeing a tube protruding from under her neck where her port line is. I want her hair to grow again. I want people, well-intended or otherwise, to stop looking at her with that pitiful question mark on their faces. I never want to give her another shot, or change a bag of fluids in the middle of the night. I want her to grow again and be taller than her baby sister. I need her to go back to school and socialize and normalize and be a part of the group. I can't wait to lick her drippy ice cream come and not worry that I may of just made her sick. I am ready to get our life back!

So we will celebrate even though this week will be exhausting. The five day chemo's always are with trips to the bathroom every 2-3 hours day and night and heavy backpacks of fluid to lug around. We will celebrate that Good Friday means something very different to our family now. And then, on Monday...maybe in a few Mondays when her body recovers, we will start the next leg of our journey, stronger but weaker, happier but reserved, and thankful with a smidge of anger always lurking in the back.

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