In Some Ways The Journey Has Just Begun

These last nine months we’ve been looking forward to Maintenance, the final phase of Jack’s treatment, doggedly barreling through the “intense” phases with the promise of less chemo, fewer clinic visits, the return to school…it sounded so much better! It sounded like relief!

Instead of feeling that sense of relief now that we’re there, the start of Maintenance is reinforcing the feeling that this is a never-ending process. This Maintenance milestone feels false, like the phase was given a nicer name so that we could trick ourselves into remaining hopeful about the future.

It reminds me of those first days in the hospital, when the doctors kept repeating that this was the “good cancer” and telling us over and over about the success rates of childhood leukemia treatment. THIS is the cancer everyone wants if they could choose; this is the one that has the most funding and research! I wanted to believe them. In my naivete I thought that maybe this would all be dealt with in a matter of six months or so. I told myself that this was like a lot of other illnesses – that it sucks for a while and then it’d be gone and we wouldn’t think about it after a while. I felt like someone had punched me in the gut when it finally occurred to me to ask how long treatment would last. THREE YEARS, they said. Three years IF there are no delays, remissions, setbacks.

Uhhh…this is the ‘best cancer’? Whaaaa?

The mind trick worked for a bit. But reality is setting in. Maintenance still involves chemo – daily pills and monthly infusions, plus the daily line flushes and the weekly dressing changes. This routine lasts two years.

Jack can return to school – resume a semi-normal life – but then he’s subject to all kinds of germs. It’s actually MORE worrisome in that respect – infection is still the biggest culprit for deaths during remission in children with ALL. (I just looked that up. I’ve been ignoring those statistics these past nine months. Tip #1 for coping with cancer: DON’T GOOGLE IT. Close your eyes, plug your ears and sing to yourself LALALALALA I’m not listening!) Oh and we have to hope he doesn’t develop an interest in contact sports.

There’s not much anyone can do to lessen this burden on any of us. It’s not a financial thing, although we’re certainly feeling it there. It’s not a matter of donating time – our family and friends have been more than generous and helpful. It’s just something we have to accept – the fact that Jack is still in danger from the disease, the treatment used to cure it, and the people around him who might be carrying any number of illnesses. Nothing will take away that worry that a fever will bring.

We need relief. We need days where we can just by worry-free and ignorant of this ugliness. We need this next two years to be behind us instead of stretching out as far as our eyes can see. I desperately want to believe and trust that the treatment has been 100% successful, that we’ll come out of this stronger and more resilient and have no reason to grieve more than we already have.

I’m usually a “prepare for the worst, hope for the best” type of person. I just can’t prepare for anything other than Jack getting better. That doesn’t stop me from worrying, though.

Even after curing the disease, there will be more to watch and look for. Yearly checks for cancer – for life. We’ll be watching for long-term effects of treatment like heart damage, muscle weakness, learning disabilities, and the development of other cancers. While I’m sure with time I won’t fear every illness that comes around, I’ll probably always wonder if the cancer will come back.

The start of Maintenance marks the end of simply beating the disease and the beginning of living with the aftermath. We are out of crisis mode, but that means we have time to think and feel and react and process all that has happened this year. In some ways it’s the hardest part of all of this.

8 thoughts on “In Some Ways The Journey Has Just Begun”

    1. Thanks, Cat. I’m hopeful this is helpful – to me and to other parents who might have to deal with this stuff. I can’t believe that I knew so little about living with cancer before now!!!

  1. I don’t have any advice or special words (and I’m not sure that you need those things anyway), but I wanted you to know that I read this, and I hear you, and I hold Jack (and his parents!) in my prayers. As you enter the new phase of living with the aftermath I pray you will have more hours living than worrying. All my love.

  2. I’m so sorry it’s still such a long slog. (For your family and, looking ahead, for mine!!) I’ve heard that maintenance can be just as hard as the first phases of treatment — though in different ways. I’m glad you’ve made it through, though, and send good vibes for continued negative tests and good health.

    The “best” kind of cancer still blows big time, doesn’t it?

  3. Wishing you didn’t have to go through this, but sending you the strength to keep on keeping on. My son is almost 6 years out from his tumor surgery now. And for me (and for my family) it got much easier once we hit that magical 5 years. My son still has yearly checkups, but at least the MRIs will be 2 years apart now (though I don’t know how long this will go on… not sure I really want to know… blech). And no doubt, having time to think and process is sometimes worse (especially since I have a tendency to overthink, well, everything). How I hope these next two years fly by and are uneventful (except for the good kind of events). Thinking of you and Jack…

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