Sunday, December 15, 2013

Two Steps Forward, One Step Back

That’s how the recovery seems to go for many pediatric bone marrow transplant patients, especially adolescents, infants, and toddlers. During the long monotonous days and months of heavy medication, frequent medical visits, and crushing isolation, suddenly recovery will seem a little more tangible and closer, a medication discontinued, lab results more normal, or a pass home granted. An actual date signaling the end of the strange, abnormal existence completely focused on the round-the-clock maintenance and vigilance of that fragile new bone marrow system seems calculable. Normalcy seems tantalizingly within grasp.

10 years ago, when a cure for
Sickle Cell Disease was unimaginable.
We do know this is a miracle.

And then, as happened with our daughter this week, little signs indicate that recovery might not be continuing quite so steadily, albeit at a plodding pace. An alarming weight loss, increased vomiting, and a call out of the blue because a lab result showed the critical oral medication to treat her Graft vs. Host Disease was strangely no longer being absorbed by her body. Suddenly, the second much-needed weekend pass was revoked (she got to come home for the first time since July 29 last weekend), and a new home syringe pump was delivered to administer that medication in IV form. In the world of bone marrow transplant recovery, decreased IV medication is one of the signs that home and normalcy are one step closer. Adding IV medications, scheduling increased clinic visits to monitor the levels of that medication, and losing the chance to go home so you can be close to the bone marrow unit in case of emergency, push the longed for discharge date to the care of your home hospital back to an unknown. Again.

And then the pity parties start. Again. Our teen patient, already sick, bored, frustrated, and lonely, retreats further into sleep. Eating is a depressing effort, with no appetite, but the knowledge that if any more weight loss occurs, an IV for liquid nutrition and more time at the bone marrow clinic will be the next steps backwards.  The difficulty adjusting to the strange bubble world of bone marrow transplant recovery becomes more pronounced, and the frustration of dealing with constant inquiries about symptoms, eating, and just barely minimal activities of daily living much more evident. Being a teenager with a normal high school experience is hard enough; being a teenager left out of your senior year and living in a small space with your mother is the worst thing that ever happened to you.

I haven’t talked much about being the parent of a bone marrow patient, but the loss of control of our own lives is one of the hardest experiences we have, along with watching our children suffer terribly and not being able to do much to relieve that misery. We parents cling together, and when we get a minute to chat, endlessly discuss bodily functions, medication administration, catheter maintenance, and yes, that helpless feeling that everything in our lives right now is absolutely beyond our control. It helps. For me, missing my husband and best friend desperately as we change caregiver shifts like ships in the nights, lacking a job and health insurance for the first time in my life, watching my small retirement savings vanish to keep a roof over our heads, endlessly cleaning our temporary home at the Ronald McDonald House and our “home-home” (bone marrow transplant speak) for an auto-immune suppressed patient, and yes, living with a sick and frustrated teenage daughter, with whom I’d always gotten along beautifully before, have worn me down to the core. There are too many days when I feel like the worst parent in the world, too tired to do more than make sure the central line is maintained, hook up the IV meds timely, and beg my child to eat something, anything, even if it shoots her sugars through the roof.

I wrote in a Facebook status earlier this week that I know we will get through this, stronger and ever grateful, and we will. But right now, in this very moment, while we are taking that dreaded step backwards – again - that longed-for date when normalcy might start again seems like never.

13 comments:

  1. My heart aches for you all. I'm sending all the love and energy I can. This time will pass but for now it's an eternity I'm sure. Thank you for your courageous writing. XXXOOO

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  2. I can't even imagine how wearing this whole experience must be for all of you. I know it can't help much, but my own personal way of gutting through long, wearing, horrible things is to keep reminding myself that one day it'll all just be a sucky memory. I'm hoping this sucky memory will be in all your rearview mirrors VERY SOON.

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  3. I wish I had more to offer than my thoughts and care for you across the miles, Lynne. What a roller coaster of emotion and expectation you all are enduring! Best to you as always, xoxo.

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  4. Oh my heart goes out to you both. That seesaw is so wearing. You are in my thoughts, and I hope that the steps forward far outnumber the steps back from this point forward.

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  5. I am so sorry to hear how frustrating and difficult this is for you and your family. All I can send you is healing thoughts, best wishes and a huge hug. ((((((Lynne))))))

    bisous
    Suzanne

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  6. I hope everything goes upward for you and your family Lynne. I'm sure it is even harder with the holidays. Please know you are in my thoughts all the time. I am sending hope of strength and patience to you and your family. Much love.

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  7. It sounds so, so difficult. I can't imagine how you all keep going, except that of course you must, because there is no other option. It WILL end, and things WILL be better, but the process is hard beyond belief for all of you. Much love to you and The Teen. Your ability to write so clearly and honestly about your experiences is awe-inspiring, Lynne. xxxx

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  8. My heart goes out to you all. Sending you lots of love from across the ocean. xxxxx

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  9. I wish I could make any of it better for you, especially the Teen's recovery. I will say you and your husband sound like the world's greatest parents. I'm sending love to all three of you.

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  10. Hardship is inherent in the rough period you're going through. Of course it will overwhelm you at times. Don't worry about that. Just do your best and keep your head up. Wishing your strength.

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  11. Echoing all the commenters above - been following along, with kindest thoughts, deepest respect, and so much love. xoxo

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  12. Sending you and your family, especially The Teen, so much love Lynne. Thank you for writing so clearly and eloquently, it gives me a chink of understanding what you are going through. I think about you a lot xx

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  13. Your posts about your family's struggles remind us all of how much we have to be grateful for, and how we forget to be thankful for what we have. It is very noble of you to share your innermost struggles and I hope it is cathartic for you. The new year is always a time of hope for a better tomorrow and you and your family certainly deserve that. Your on-line fans/friends are pulling for you and wishing for a new year that is leaps and bounds better than this one! Many people would crumble in your (stylish and fun) shoes but you are hanging on and have made an incredible sacrifice for your daughter and family. May you find some moments of peace and joy, and best of health in the new year!

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