So what if my child does relapse?

Dwm,

given the intensity of the fear and anxiety you have been feeling, I think that this is a healthy inquiry on your part.  I think confronting fears, instead of shying away from them, is always a healthier approach.  I hope there may be someone out there who can answer some of your practical questions.

On the psychological side, I want to share with you a perspective that I, personally, have found extremely helpful for focusing myself on the here and now and emphasizing the positive.  Just a warning to any readers -- if you don't want to read about the "R" and "D" words -- and everyone's comfort levels are so varied on these topics -- stop reading now.  Seriously.  I referred to them by their first initial out of deference to those uncomfortable with this talk, but will deal with them directly below.

What is my worst fear?  My initial, easy if you will, answer is relapse.  That my daughter will relapse.  Any cancer parent is lying if they tell you that they don't feel some degree of anxiety about their child relapsing.  I mentioned on the other thread that when I feared that Elke was relapsing in her CNS, it was so helpful to have parents who had "been there" chime in and tell me, as you are seeking here, that things could still end up all right -- that my world would not come crashing down and end immediately if Elke relapsed (although it might feel that way if it happened).  And I've realized through observing Margaret and Joey's incredible attitudes that my worrying about relapse was not going to change whether it occurred.  What it would do, though, is needlessly ruin my time with my child in the here and now.  If I worry and stress about Elke relapsing, to the point where it interferes with my enjoying every little moment of the here and now with her, and she does relapse, what has that worry accomplished?  Nothing, aside from ruining what could have been quality time with my daughter.  And if I worry like that and she doesn't relapse, then I really have created needless anxiety in my life, accomplishing nothing more than adding additional stress to our days.

But when we were talking about confronting your worst fear in the other thread, I realized that relapse was not, actually, my worst fear.  My worst fear is that Elke will relapse and not make it.  That Elke will die.  My anxiety about relapse is really covering up my far deeper fear that I may end up losing my daughter.  Horrifying, by any account.  But I have, like most cancer parents, unfortunately known of several children who did not beat this monster.  And one thing that impressed me more than anything about them is that they LIVED.  Truly LIVED.  They lived every moment they had here on this earth to its fullest -- they knew how to appreciate the small and mundane, and find joy everywhere.  And some of their amazing parents have shown me they've done likewise.  And in pondering the horror that would be losing my child, and seeing how some of these children truly lived more in their short lives than some people do in 80 years, I've realized that there's nothing I can do to control the ultimate outcome.  It's completely out of my hands, and in Someone far greater's.  And that knowledge leaves me with a choice:  I can either live each day fearful that tomorrow may bring the news I most dread, or I can focus on the fact that my child(ren) is alive TODAY, and that's what counts TODAY.  And treasure each smile, and laugh, and hug, and even smile a bit at each ridiculous tantrum.  Because she's alive today, and that's really what counts.  Yes she could relapse; yes she could die; yes I could be hit by a bus tomorrow (seriously!).  Not one of us is promised tomorrow.

What keeps me from dwelling too long on my darkest fear is the memory of the children who have passed, and how they lived their lives.  And knowing that their parents, who would dearly love to have their children back, even for one more day, would look at me and say, "Don't waste a single moment of your time with your children mired in stress and anxiety.  Enjoy your life and your children.  You can't change things that are to come, but you are in control of how much you appreciate the here and now."

I'm not perfect.  It's easy to write about not being stressed out, and so much harder to live it.  I have my moments, believe me.  But when I do, I think about how the parents who have lost their children would think I was foolish to worry about something that might happen in the future, over which I have no control, and to possibly allow that anxiety to interfere with enjoying the here and now with my children.  I'm sure that if they could go backwards in time, they would want to make sure that they savored each and every moment of each and every day with their child.  That's my goal.  I constantly fall short, but that's what I strive for.

Okay, really emotional and possibly sappy, but that's what keeps me going when my mind strays into those dark and fearful places.  I think of those children who showed us all how to truly live, and I think of the parents who lost them, and how those parents would shake me and say "stop worrying and enjoy them.  Today is what counts."

Sorry (as usual) for the length.  And sorry for the psycho babble.  It's Friday, and it's been a long week.  What can I say?

I hope you find peace.  I hope we all do.

Ann

(Btw, in rereading this tortuous psychological monstrosity, I want to emphasize that I wasn't calling your fears "foolish" by any means.  I do not think they are at all.  I have my fears, and I can only imagine how they would have been compounded had I had more than one child diagnosed with cancer.  I just was throwing out the dialogue that sometimes occurs in my head.  Which is a scary place sometimes....)

DWM,

I just wanted to say thank you for being so open and posting this fear thread. I can pretty much put money on the fact that it will have hundreds of readers, probably not many who will post or comment but many of us who think the same thing and are afraid to speak of it. You are incredible dealing with two CK and you have been an inspiration to me many times since Addison was dx'd in April. I think many of us find therapy in these boards and this thread is one that will do that for me.

Thank you.

Sarah

Jill, when I first saw your thread I thought "arrgh, the one thing I am trying not to think of!"

But good on you for doing it. If not many actual relapse parents answer though, I think there is an actual relapse group you could put it on.

http://www.lsoft.com/scripts/wl.exe?SL1=ALL-KIDS-RELAPSED&H=LISTSERV.ACOR.ORG
I have never actually checked it out myself, but always saved that address, just in case.

I too will be interested in the answers if any parents do come forward.

I thought Ann's answer was awesome and very eloquently put. But it's funny, since I had that scare yesterday, and was really freaking out, I found that the anxiety wasn't totally bad. I am generally a pretty grumpy mum, but since thinking that Pete may be in trouble, it really openned my eyes again to just enjoying every second with both my boys. I know that I should have learned that the first time round, but it just gave me another little reminder.

Bridget

Joey's relapse was officially diagnosed 2 years minus 1 day from his first remission. He was 15 months into LTM and 16 months from OT. He had a double lumen broviac placed and we began a new protocal (off study). There are 3 things that Joey didn't "see" frontline that he'll see this time in order to get him, please God, into permanent remission. Those 3 things are Nelarabine, high dose methetrexate and cranial/spinal radiation. He had cranial only the first time through. 1/3 of the oncologist that our team have consulted think that we should already be doing a BMT and that we are wasting Joey's time. Even though he went back into remission after 3 weeks of twice weekly ITMTX, they feel there is no way that he will stay in remission. 2/3 of the oncologists, and my husband and I , think they are being old school. Joey's relapse is isolated to his CNS and extensive BM testing (new in the last couple years) shows absolutely no bone marrow abnormalities. When Joey starts IM, with the high dose MTX, hopefully the 31st of this month, he'll have another BM aspiration. If he were to relapse again or the BM were to even "blink" so to speak, then we will go to a BMT (we've all been tested and one of his brothers is a match). If after a BMT he were to relapse again, then he and I would move to Tennesee b/c St. Judes has a lot of post transplant relapse work going on. Jon, we didn't figure that out overnight, it took us a couple months and a lot of research to put our continued relapse plan in place.

I guess the point of all that would be that there are LOTS of options out there. My husband and I were just talking about this last night. The fact is, the numbers don't look good for Joey and the reaction of medical people outside of our oncology team when they hear about Joey's relapse scares the bejeesus out of me but we are far, far from having exhausted our resources here. If "all" we do is continue to buy him time, we're talking about a heck of a lot of time. I'm not going to kid you, Joey's relapse is horrific and has affected me more than his original dx did. I don't work at all anymore and there are days I have to drag myself out of bed to get the other two boys to school and then I crawl back in until Joey wakes up. I've cried more in the last 5 months then in my entire life and I'm quite sure that I could be technically diagnosed as depressed but guess what? I also laugh everyday, enjoy my horrible tv shows and beer, love my husband, get ticked off at my SIL, feed the dog, do the laundry, am overjoyed by the generosity of others, get disgusted watching the news,waste too much time on facebook etc, etc, etc. All the things everyone does.

Relapse is relapse. It happened to us and we're still here.

Margaret

Chiming in late on this one because I wasn't sure what to say. As always, Ann and Margaret (and caffeine this morning) gave me some wings...

DWM, I'm so sorry you're feeling this way, it sucks, but I'm pretty sure it's as "normal" as things can get for us.  Pre-dx, we all had that fear that something bad might some day happen to our kids. They'd wander off at the store and we'd have a moment of being sure they'd been kidnapped before we'd find them innocently kneeling at the Hot Wheels display (that's where mine always were!). They'd fall down out of our line of sight and wail in pain, and for those few seconds of running toward them, we'd be sure they had broken their back. For most parents, the panic rarely progresses too far past that point, thank God. I'm one of those parents who always gave my kids quite a bit of freedom, within reason -- no one ever called me overprotective, that's for sure. I always thought I was doing the right thing by letting them find their own limits, even if it meant they skinned a few more knees and elbows. Make a bike jump out of wood, run down the slide, jump off that swing and pretend you're superman -- what's the worst that could happen?

All of us here have been to the "worst that can happen" and then some. DWM, you've been there times two. I have as well, though under different circumstances. Those petty fears we all had back in the land of pre-cancer still have a voice inside our head, but it's amplified now because we no longer fear what might happen, we now fear a reality that we know up-close-and-personal does happen. We live in a different world now. Our fears aren't cloudy and obscure, they're crystal clear, and that's just plain scarier. Everyone's way of coping with this is different, and I hope you find a way that works for you. I bet it will be more than one thing, and faith will be a big part of it. Several months ago I met over the phone with a counselor specializing in situations like ours, and she told me that she rarely sees parents who face serious health issues with their kids not have some symptoms of PTSD. By defniition, we fit the bill, that's for sure. I decided to go a different route and never ended up meeting with her, but her advice was something like hold on to what is good, accept what is bad, and let go of what you can't control. Three easy steps? Not so much, but do-able I think for each of us in our own unique way.

I agree with everyone else who has posted so far, and appreciate Margaret's input very much. Margaret, IMO, we gain so much from you and never, ever see you as bringing anyone down. Your story is real, your advice is always heartlfelt, and your courage inspires and shines like the 4th of July. You are my Ursula Upper.

I'm no mental professional (though I could make a career out of going mental), but I think the worst thing any of us can do is not address the fears that go along on this journey. Kids relapse, and kids survive relapse all the time. Some kids die -- before a relapse, after, whenever -- we know it happens and pretending that it doesn't, I think, is fuel for our fears. To further torture the metaphor -- invite the fricken elephant to dinner. Talk to it, understand it, and accept it. If you need to, HAVE the elephant for dinner. The worst thing we can do is let that damn elephant own us -- as soon as we do that it will suck up our own light and power and we'll struggle to have any to offer our kids our ourselves.

Well, Cha-ching, there's my two cents -- hope I didn't make things worse, DWM, and thanks to everyone who responded to this post -- it's not an easy thing to talk about, you're all very brave -- just like your kiddos.

Kristen the Elephant Slayer (today anyway)

Very important thread for all of us (as uncomfortable as it might be), I agree...

Dwm, Thx for the post. Though this was uncomfortable to read, it helps to acknowledge this!

I don't know a great deal about relapse protocols.  I do know that the stage at which the child relapses makes a difference.  I, for one, found great comfort in finding stories of children- real live people- who have relapsed and went on to live "normal" lives.  They are out there.  It seems that the relapse protocols are harsh and you have to go through hell to get to the other side.  But, there IS another side.  Children have faced horrific odds and defied them.  Yes, it is true that far too many of our children don't make it.  But so many do.  When relapse creeps into my brain (which is often), I remember that the idea of a child with cancer was so horrendous BC.  I thought it was a certain death sentence.  Maybe a few of those poor kids made it out, but that had to be rare.  Months of struggling to eat while laying weakly in their beds followed by a horrible death (sorry if that was too graphic)- that was my image.  Obviously we know that ain't so.  SO- relapse would suck eggs, but I know that we are all strong enough to pick up the pieces and make the best of it.  We have to.  Just like we had to at diagnosis.