Now What…

Sophie’s last MRI on Dec 3rd showed tumor growth. And absolutely no cell death from the radiation (or the ketogenic diet we’ve had her on for the past month). The oncologist said that necrotic tumor tissue has little polka-dotted dark areas where the contrast dye isn’t absorbed and also does not have smooth uniform edges like he saw in her scan. There isn’t any question that she failed the golden standard and aggressive treatment that they were hoping would cure her. At this point, he’s offering a few Phase I clinical trials in various locations (including DC Children’s) or to go home with palliative care and enjoy the time she has left with us. I hate it hate it HATE IT that the last option was even mentioned. I know it’s a good choice for lots of families, but to me it sounds like giving up and it also means wrapping my mind around the possibility that we might actually have to watch her die right in front of us. I just want to wake up from this nightmare. The only way to handle things is the way we have been: don’t dwell on the pain and heartache from this past year of treatment and try not to think too much about the future either. Living in the moment comes very easily when it’s a survival mechanism. It’s served me well so far. I’m enjoying Sophie NOW. Though I certainly still spend time enjoying old videos and photos of our beautifully normal pre-cancer days, I’m not mourning them so much anymore and instead I’m just appreciating and smiling at the happy memories. Most of the time though I’m in the moment: I’m experiencing her soft hair with all my senses, letting my heart dance to her sweet high-pitched voice as she sings ABC and Twinkle Twinkle, committing to memory the weight of her body as I hold her and how it feels to have her arms wrapped around my neck.

We are waiting to get more info back from a place where we sent her tumor tissue for genetic typing. They will tell us which DNA deletions and anomalies they find in the cancerous cells and we hope that new info will guide us more clearly towards something that can still cure her without the horrible side-effects she endured during the high-dose chemo that nearly killed her 4 or 5 times over. And cure is just relative… after the highly toxic treatment Sophie has endured, it’s a given that if the tumor goes away she will still suffer enormous side-effects for the rest of her life. We’ve already lost our original little girl. It feels similar to a break-up… it feels like a mini death of sorts but the person is still there. And when you get over it your relationship different:

But Sophie 2.0 is still our beloved daughter and still capable of great things and we love her just as much as the “old” Sophie if not more because we now know how tenuous life is.

We aren’t particularly surprised at the results from this MRI- it seemed she wasn’t doing as well as hoped from the very beginning of treatment since we never saw significant tumor shrinkage. Our only big treatment success is the large amount of tumor tissue her surgeon was able to remove. Even though her spirit is strong, her body has been weak and prone to illnesses and sensitivities ever since she was born (eczema, food allergies, reflux, reactive airway disease, and suffering through 2 to 3 week long viruses every single month for her first year or so). People sometimes say Sophie is a fighter and is so strong and will pull through. I so wish that were all it took. But she’s a little girl, she’s not a fighter. Her body was weakened by the treatment alone. A brain tumor doesn’t seem to care about how positive and determined you are about beating it. So while we are extremely sad that our fears are becoming more concrete, we pretty much feel the same today as we did the day before the MRI. She’s not in treatment again yet. We are still at home and put up a Christmas tree and are spending time together until whatever’s next. We keep on living in the present.

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11 thoughts on “Now What…

  1. Jenna,

    Well said; heart breaking as ever, but well said. From the outside looking in, you all exhibit strength a million times over; it’s very easy to focus so much on doing whatever is needed to save your loved ones that you miss NOW. It’s very clear how much love in between you all and the time you have together. Some don’t ever have it.

    You are all loved and thought of often.

    Darlene

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  2. Hi Jenna, this is Nefertiti. I wlll definitely keep Sophie in my prayers. Know that God can work miracles and he is the healer above any doctor or treatment. Your little girl is a joy. I wish there was something that I could say or do to make this process easier. Continue to enjoy her and know that God always protects the babies. God Bless!!

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  3. Like what has been mentioned above, there is little that I could say to improve what’s actually happening. All I think I can say is to go on and cherish the times living in the “now” and keep an eye on potentially life changing studies and trials, etc. If there’s anything I can do, let me know.

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  4. Laith and Jenna…. know that we here on McCandless hold you and your precious Sophie and Lucas dear. My silence in this blog to date has been my inability to express whatever I thought was appropriate…and I apologize for that.

    Walter and Isabel, who bought your house, are lovely and dear friends who are loving their home and all you devoted to it. But I still miss you, and you’re in my thoughts and heart as you continue this journey.

    Love to you each and all….

    Robin

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  5. Sending ALL my love and prayers for you continually. May Sophie enjoys sweet times with her favorite people all the days of her life. And may God bring miraculous healing to her!

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  6. Jenna, When I met you I thought you were a pretty cool woman. Now, you are one of the strongest women I have ever met. Your positive energy through this should be bottle and sold. I would line up to buy it. Stay strong, be a ray of light for your little girl, and never give up. I am so amazed with you and wish nothing but the best for Sophie. No cliche can change the outcome of this cancer more than your love as a mother. You are both in my prayers.

    Bobby and Emmet(from above)

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  7. We are so overwhelmingly touched by your words and bravado in the midst of such a sad scenario. Hopefully our prayers will offer you some support. and admire your ability to live in the present. Will you be coming to DC?

    On Thu, Dec 5, 2013 at 10:53 AM, The Vincents

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  8. Jenna, I love you and your family. My heart breaks for you and what you’ve had to endure. My own heart was broken when Max was diagnosed with his apraxia, but now that just seems silly in comparison, because even though he’ll have struggles, his life won’t be threatened in such a way that Sophie’s is. He gets to stay with us. Sophie’s future is uncertain and that’s just awful and I hate it so so much. You all are such an inspiration, even though I know it doesn’t feel that way. You have a huge community that stands behind you, so I hope you don’t ever feel alone. Thank you for also reaching out to me and offering your support and encouragement with Max, making me feel that what he’s going through is just as important. You’re truly amazing and one of a kind. XOXO

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  9. Jenna,

    I want to come through this phone and hold you and help you and tell you with my own voice how amazing you are. Over a year ago you texted and this battle began. You and your whole family have been warriors. I breath a little different, and hold the ones I love a little longer and a little closer today than I did then. You have made me a better mother and wife. I honestly don’t know if I could have fought as hard as you have. I don’t know if I could have stayed so focused on the moment at hand and absorbing every minute like you are. You are a warrior. The strongest woman I know! I feel very confident if there was a genetic marker for fighter sweet, sweet, sweet, Sophie got it from you. Thoughts, prayer, and my heart are with you!

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  10. I wish this were a horrible nightmare from which you could awaken. Sophie is an amazing child to be commended for withstanding so much in the last year. My heart aches for all of you for what she’s endured and for the fact that the future is so uncertain for her. It seems you and Laith have risen beautifully to the challenge of advocating for Sophie and being the best parents you can be to your two children. I know some parents of children with cancer feel they are doing what anyone would do in their situation, that they don’t have a choice but to be strong. But I have trouble believing that some parents in your situation don’t get mired down by what might have been or what lies ahead. You are making a conscious choice to live in the present and savor each moment of the now, and what a wonderful choice that is. Even if all parents of kids with cancer exhibit your strength and positivity, that makes it no less incredible. Thinking of you all often from Austin,
    Elva

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