Sunday, November 6, 2011

There's No Place Like Home: Keeping Positive

Dorothy says it best. "There's no place like home." While it's no surprise I easily throw that quote around what with Av being in The Wizard of Oz (munchkin!) it rings so true right now. After 4 days of our second hospital stay in this phase called Interim Maintenance, I'm SO glad to be home and to have our family under one roof. So is Alaina. So is Chad. Well, everyone is. I even think Anderson missed me!And I know sweet Averie did. I have to say, she's still the best bigger sister ever. She really tries to understand everything going on.


I'm so blessed to have such amazing kids!


A lot of people say to me, "I don't know how you do it." Quite frankly, I'm with them. All I can conclude is that God is up there lending me a strong helping hand. Because there are several times I find myself staring into the mirror waiting for me to crack. Anderson turned 4 months two weeks ago....and the day after that marked our four month venture with leukemia.

4 months. It's crazy that much time has passed, yet at the same time, it feels like we've been here forever. I'd like to say the Induction phase was the hardest...it was the first phase, when she was diagnosed and had to be in the hospital for 3 weeks, and I'd just had Anderson and was toting him along with me back and forth from the hospital to home. But I'm not so sure. Then, when something like that crashes into your life, you kind of live off adrenaline. That rush of, "Holy hell, what just happened to our life?" mixed with, "I can't stop. Got to keep going or everything might fall a part."

The next phase was Consolidation. It was more just a pain int he ass than hard, really. Of course, the best part of Consolidation was the beginning when we got the news Alaina was officially in remission. The bad news was that she was/is high risk...meaning the cancer she had was aggressive, which means her treatment will be aggressive, too. So while standard risk patients get a  bit of a reprieve during Consolidation, Alaina was going in for chemo 4 days a week for 2 weeks, 2 weeks off with oral chemo but still trips to the clinic for blood and platelet transfusions, and then this pattern repeated for two months. Through all of this we had her many allergic reactions, two emergency room visits, one for fever, the other for leg pain that resulted in hospital admittance and a week in the hospital after hip surgery for fluid on her hip joint....which also resulted and various allergic reactions to antibiotics and drugs. Then there was her ambulance trip to the hospital when she had anafolactic reaction to one of her chemos. Then a week after that she was said to have scabies so we were all treated for that.

Today her skin still isn't back to normal, she has 5 allergies listed on her bracelet, she doesn't eat much (but what she does eat is generally healthy so that's good, and bad when trying to get calories in her!) and she throws the worst temper tantrums I've ever seen, not to mention her night terrors. I never knew how rare night terrors were until the nurse practitioner gave me a sheet about them. I forget the percentage, but it was low....a lot of people confuse bad nightmares with night terrors, but I can say I know the difference first hand. The worst was a little over a week ago. She screams, cries, kicks, hits, thrashes around on her bed and I'm not entirely sure when she actually woke up during this. Nothing consoled her. We had to move Anderson to our room, and we couldn't leave her alone like we might do when she throws a tantrum (set her in her room until she calms down or we can calm her down)....we tried that and she became a danger to herself, wedging herself between the headboard and the wall. It took me breaking down in front of her to calm her down....she immediately stopped, asked why I was crying, and proceeded to let bunny shower me with kisses...which I have to admit, made me cry even more.

The thing is, she had night terrors before she was diagnosed, but with everything going on, they've just gotten worse. And as for her tantrums, I'm so afraid she's going to end up spoiled or bratty because she knows how to throw some really nasty ones. She screams at the top of her lungs and is too smart to be distracted or manipulated. And she's a persistent little booger. But she can also be mean and rough with Averie and Anderson. Chad and I have been talking about play therapy. As tough as she seems and as good as she's been handling her new life, she's obviously got to be having some issues and she's two, so I mean, it's not like you can really talk about them.

Anyway, this is turning out long. In this phase we're in, which I have to say I'm liking far less than the other previous two, we have to stay in the hospital for 4-5 days for chemotherapy every other week, pending how her counts (immune system, oxygen in blood, and platelets....the ability to clot blood) are doing. They have to meet a certain level before they'll proceed with the next hospital chemo, because other wise she'll have nothing left. We do this a total of four times. We just finished our second, which had us in there from Tuesday until Friday night. Being in the hospital is exhausting. Especially when your very active two-year-old is bound to an IV machine and can't do as much as she'd like. She gets frustrated about it and takes it out on whoever is around her, but luckily only during private. She's great with everyone at the hospital and LOVES the play room. But once we have to go back to the room and stay in her bed? Not fun.

I love this picture...randomness but had to share. This was after she ate the head off the broccoli and said in the broccoli's voice, "Look, I bald!" We've taught her to say in her oh-so-cute voice, "Bald is beautiful!"

The other thing about this is we get to repeat this phase after the next phase, called Delayed Intensification. During that phase we have a bunch more different chemos, kind of like Induction and Consolidation mixed. We go in the clinic as much as we did during Consolidation, except more now that she's severely allergic to one of the chemos, and the replacement chemo requires 6 visits for the one we would've gotten on the one she's allergic to. And she'll be on steroids (like she was all of Induction) except 7 days on, 7 days off. I'm preparing myself for a mood-swing filled Christmas. At least she'll eat all the food! As far as chemo is concerned, other than the hospitalization, her treatments this phase aren't so bad. She gets droopy eye a little when she gets the Vinecristine, but so far hasn't shown any bd side effects with the high dose methatrexate she's given in the hospital, or the oral mercaptapurine she gets at home every day. Of course, they're really good about giving her zofran and the like before hand to keep the nauseousness at bay.

So anyway, putting it all down like that helps me prepare and soak in what is next to come. Life is hard, but I remind myself and family it could always be harder. We've been bestowed so many many blessings to help us keep going and staying strong. And besides, the only way to really make it through something like this is to find the positive in everything. Otherwise, it'll beat you down so hard you'd be in danger of never recuperating.One ray of sunshine can go a long way.

5 comments:

  1. So glad everyone is home and doing good at the moment. We just finished one month, will find out next week what the next step is for us, can't wait! Praying for you too, Trish

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  2. Christa, you are such a wonderful writer, you have such a skill. It is a pleasure reading your stories. We love you and all the family and are thoughts and prayers will remain with you. Enjoy the game today!
    Love, Dad and Mom

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  3. Well written Christa, you are such a great writer. I must tell you yesterday was the first time I have babysat all THREE of the kids, I feel very blessed to have raised a daughter that is so gifted in so many ways and to triumph forward with such a positive manner. I also feel blessed that I get the time with each of the kids that I do. Averie was so good yet I could see she needed some extra attention so I made a point to spend one on one with her when Anderson was sleeping and Alaina was playing on her own. She is such a caring and loving child. Alaina got her time in with me too and we all had so much fun dancing. Love you ALL very much. Mom/Nana

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  4. Oh, Christa! It's so crazy to read through this and to think what you've been through in just four months! It seems longer to me and I've just been a spectator in all this. I just wanted to say, you're doing a great job and God is faithful! My daughter who is now ten had night terrors when she was little and I remember them vividly. They were horrible, horrible, horrible -- very different from a child crying over a nightmare. Hang in there, my bloggy friend!

    Amy

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  5. Thank you for sharing your story. My daughter sufferers from night terrors as well and I have tried a lot of things to get them to stop. I have found a lot of tips at http://onlineceucredit/com/edu/social-work-ceus-sd. I hope everything goes well for you and your beautiful family! Best of luck!

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