Sunday, November 6, 2011
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."
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.
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.
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.