Whew! It has been a while since I wrote, and quite frankly we have been busy. Not just with the telethon, which was a HUGE success and thanks to everybody who supported the kids of St. Jude, and not just because of our benefit coming up this Thursday, but also because we have a 3 year old who has cancer who is taking a steroid that changes her personality at the drop of the hat. As I type now, she is crying...screaming to be exact..over Well I don't know what its over. She has been crying when she doesn't get her way, let me rephrase that, she does the floor flop. And then if she's not crying, she's yelling at us. If she's not yelling at us, she's picking fights with her brother or vice versa. Then there is the food issue. We are constantly making her something to eat. She doesn't finish eating one thing before she is ready for another. And she doesn't sleep EVER. No naps, and then of course she will fall asleep around 11 at night and up at 5:30 or early demanding food. Its has truly been exhausting. Then add on top of that, the stress we have of the cancer and the side effects of the chemo. We were suppose to get a chemo called peg (for short) today to round out her Reinduction 2. And we were unable to receive it because her liver enzymes are through the roof. Normal is somewhere between 14-56 and hers are in the 400 and 500's. So of course I almost started crying. I asked what this meant. Does this mean her liver is failing to work? They said that since she has been processing so much chemo through her liver, it has become inflammed. Basically the liver is pissed at us. So we just did one chemo today and go back on Friday to see if the levels go down. If they do go down, she will get her peg, and if they go up...well, we didn't ask. I don't want to know, we will cross that bridge when we get there. I'm frustrated right now. It's one step forward and two steps back. And I'm worried, and scared, and angry. I still get angry that she got cancer. I wonder when that will go away. and I don't think people understand how much we are still dealing with this and how this will be a part of our lives for 2 years and while its been running smoothly for the most part, there are so many risks involved. People say "oh, she's doing better, and she's in remission, so what's the big deal". Sometimes I want to say "WHAT IS THE BIG DEAL???" My daughter has cancer. And she receives more chemo than most adults that have had some form of cancer. And she's 3! and a 3 year old is a challenge in itself. And its like at a moments notice, things can still change for us. And I HATE that feeling. I used to worry about my kids before, so its not like I was the best mom to get dealt a hand of a cancer kid. I was the OVER worrier..you know the type. the ones that take the kids to the ER for EVERYTHING..yep, that was me...with Jack it was much worse, Lucy I calmed down a bit. Then not only did we learn about her liver numbers, but we also learned that the vincristine is affecting the way she walks. So we have to add physical therapy into this mix. We aren't sure how often we have to do that yet, but its another day we have to do in Peoria, maybe 2. So just as we thought things were going to go "normal", and Jack was going to go back to school, I planned on finally going into the office part time to work, things get shook up on us. Its just frustrating and I'm venting....and I feel like crying.
I honestly didn't mean for this to be a rant or negative...but I have all of this pent up inside of me, and I need to get the anger and worry out of my head and onto paper so I can sleep. I'm so tired.
We were watching the telethon back on TV, and I told Zach "wow, we look like a good family". He said "you mean normal and like everything is good?" I said exactly..what a great fantasy. Of course later that evening, Lucy ended up throwing up on the floor at the school. Then 3 more times at home. And we couldn't keep anything down but sips of water, which led us to call the hospital to see if we needed to come in. We were close...if she threw up one more time, we were inpatient. Now we find out, it was probably the liver enzymes that made her sick. So we had this great night and actually had fun, only for it to end abruptly and us to be worried sick and up all night watching over her. And I'm not complaining about watching over her, its my job as her mother, but I'm just so envious of how our life was pre-cancer, and I miss it. I still mourn it. I wonder when that will go away too. Then there is the guilt. The survivor guilt. We complain about our lives with cancer, when some parents would go back to that life in a heart beat if it means that they can bring their child back. So I feel guilty when I complain. And don't get me wrong, I'm very thankful for Lucy's treatment and prognosis, and St. Jude, just still have some of those issues with the disbelief that we have a child that has the "c" word.
xanax won't fix...hopefully.
No need to feel guilty - every thought that you have put out here is so legitimate and I have tears reading it because I just wish I could reach through the computer and give you a big hug! You inspire me and I can feel your strength, even if you feel exhausted (and I imagine you do!). My heart is with you guys every day - you are so strong and Lucy and Jack are incredibly blessed to have you as parents.
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