We have had a stressful time here--off and on for a couple of weeks. For most of you, you may find the topic tonight to be a bit repetitive and overdone. But we worry about relapse. Sometimes it feels like we shouldn't worry about it, for whatever reason. Either it just isn't practical to worry (it ruins our day, that's for sure) or it demonstrates a lack of faith. There are any number of other reasons to just relax. But we worry.
I think it is just the nature of the disease (and of parenting for that matter). I think of how much parents worry when their kids go to school for the first time, or when they get their driver's licenses. Or any time they leave the house. Parents worry. Imagine if your child had a chronic illness that has a 50% survival rate and can appear at any time...over the course of 2 years of treatment and 2-3 years following treatment. Only then do they consider it "cured."
This is how it often goes: the diagnosis of leukemia is made, and initial treatments often bring a quick remission. Then....you wait....and hope it doesn't come back. Statistics and exposure to other children with leukemia (via internet or in our hospital) show the harsh realities of the disease. The success stories are a little harder to find, unfortunately. Not that they aren't out there, but we don't tend to read about them as much. Maybe that's part of our problem. The uncertainty and waiting are what make this so hard. I can't imagine a tougher disease to cope with.
It would be nice if we could take a test following treatment that would tell us definitively if the disease is gone or not. Unfortunately, the tests aren't powerful enough to find all of the tiny leukemia cells that hide in the body. So we end up having to go about our day, sometimes wondering what today or tomorrow might bring. Relapse can be sudden, or gradual. It could show up in the same way that Maggie's leukemia first appeared 14 months ago (red spots on her scalp that wouldn't heal, and then spread). Or, it could be lots of fatigue, or unexplained low grade fevers, or bone pains, or funny numbers on blood counts. There are long lists of signs of relapse. The one that worries us sometimes is irritability or a change in behaviors.
The last few weeks, Maggie has been a real handful. She screams, she is needy, she has lots of demands that are difficult to satisfy. She needs to be at her mom's side--always. She is an emotional nutcase.
We hope it is a sign of the "terrible twos" making an appearance. Or, maybe her teething is contributing. Maybe she is just spoiled by all of our attention. But we don't have the luxury of knowing confidently that these are the cause. Any new behaviors bring panic. And we don't have the parenting experience to recognize normal developmental advances. From our perspective, it feels terrible. Our support resources suggest that our worries are normal and that other parents have the same concerns. It just goes with the territory. We are also seeing the doctor less often, getting blood counts less frequently. This alone makes us less secure. We hear that finishing treatment is sometimes the hardest stage for parents to deal with because in the next few years when relapse is still possible, you don't get the reassurance of doctor visits or bloodwork very often. Every little symptom brings panic. That's what we hear, anyways.
We worry about relapse a lot and there's not much hope for us to get over it for a long time. As much as it seems irrational for "outsiders," it is and will be our reality. As much as I hope that we will think about it less and less, we always seem to come back to this place. I don't know if other parents in our position find a real and lasting peace about it or not. But we haven't found it. And it isn't for a lack of searching.
We hope Maggie cheers up soon. We hope that what we're going through is normal. We hope that we find a way to think about all of this a little less. We hope that we can look back at this period in our lives as we prepare Maggie for her first date, or the time when she leaves to go to college, or gets married. We want to celebrate those milestones and look back with a sense of accomplishment, relief, and joy. At this point they seem so far away and so uncertain.
That's how we feel.
4 comments:
I'm glad you're sharing your feelings. I think your explanation makes a lot of sense. I'm praying for continued healing. I'm also praying that the behaviors you're seeing are the terrible 2's (or "terrific two's as a friend always said). Or maybe it is a phase I saw yearly in my own kids - the "pre-birthday nasties" which seemed to occur for 6 to 8 weeks prior to a birthday. Keep sharing and clinging to your faith and support systems.
Debbie M.
The second I read how she's been acting lately, I thought "That's how my own kids acted at that age." I wondered why it was called the terrible twos when it showed up BEFORE two.
Milestones are always harder when its your first kid. Because its your first time going through it. But you guys have these medical issues ON TOP of trying to weed your way through a toddler's behavior patterns. That definitely must be a nightmare.
I have no real advice to offer, other than I do understand how you feel. I remember the words "remission" and the "over the moon" happiness it made me feel, and then I remember the bad dreams, and the panic, and for us, the relapse. But, as you noted, that is not every case. There are "good" stories out there...like you said they are hard to find, but they are there. The only thing I can tell you that got us through what we went through is to take life in MINUSCULE doses...tiny, tiny periods of time and savour them. Try not to think too hard about the future, because I am betting that like me, the things you worried about happening to Maggie before cancer, never happened, so you can't really worry about the "right" things anyway. I hope that knowing that I have been there, and in a worse position, and am still here, standing up and hanging on to my faith, gives you a small measure of comfort.
Love and Prayers,
Monica Miyashita
Orrville, Ohio
It does take a long time to become comfortable with normal again and not be scared to death about every little thing that is different. We were very blessed with a great peace and our faith in God carried us through. Karrie is now 3 1/2 years post transplant and she is doing great. We praise God daily for this blessing. I will pray that each day you will be given a peace that enables you to move through each day worrying less than the day before.
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