In exactly one week, Sophie would be turning 4 years old. I find myself getting more and more emotional and anxious as this date approaches. September was National Pediatric Cancer Awareness Month and that was hard enough to handle the barrage of daily reminders through social media, emails, and snail mails that there are SO MANY children and families struggling through the heartache of cancer and it’s painful treatment. And so MANY who no longer are fighting the disease because their babies are gone. It’s all so heavy and makes me miss Sophie so much. But worse of all, these stats and photos and awareness campaigns make me focus on how horrendous 2013 was for us and what trauma and sadness Sophie had to endure for a third of her life. I don’t want to remember the worst parts. I want to remember who Sophie was during the brief moments she was happy last year. And remember her joyful, playful, sweet personality before cancer stole her. And that can pretty much be wrapped up and represented in a cupcake.Sophie has always loved cupcakes. Except she called them “cup-bakes”. It was mostly the candles that made them so appealing to her. So in recognition of Sophie’s 4th birthday, I think that it would help us emotionally if we celebrated what she loved (trains would be a bit too painful for me- a cupcake is more light-hearted with less heavy meaning that could be read into it).
If our friends and family would like to celebrate Sophie too and remember her in a way that doesn’t make our hearts hurt so much, please get yourself a cupcake this weekend. And put a candle on it if you want! We would love to see pictures of you with your “cupbake” if you could email it or post it on Facebook on Sophie’s birthday. It would bring us smiles on a day that will otherwise be quite hard for us.
Here she is pointing to the Mommy Cupcake and the Baby Cupcake on her shoes:
We bought our tree and decorated it the weekend after Thanksgiving- knowing that if Sophie’s MRI that next Tuesday came back with news we didn’t want to hear, we wouldn’t be in the mood for any festivities. Sophie was able to enjoy the process and help hang a few ornaments too. I’m so glad we did this earlier than we usually would. I’m also glad we let her have a gift (from friends) early- a Calico Critters house and kitty family. She played with it every day and the kitties would come to bed with her each night.
Now her tumor has grown- not into the empty space left behind from the brain surgery in March, but into the brainstem instead. Her face is paralyzed and she can’t manage her own saliva much less eat. She’s tired and weak and cannot prop herself up into a sitting position much less use her hands for any activities. She mostly lies on the couch and when she has the energy she watches videos. 😦 I’ve felt like my body is moving through gelatinous air ever since the new tumor symptoms started. And like my knees are constantly about to buckle. I can’t flip a switch to be playful and happy with Lucas anymore- though I still try. It’s so hard as he bounces off the walls saying “watch me Mommy, watch!” He deserves my attention and care just as much as Sophie. But I can’t leave her side unless Laith is right there ready to take my place. I hope that Sophie can pull through this- that the new at-home chemo she took a week ago that is supposed to buy us time works and we can go on a Make A Wish trip where she can be a steam train engineer for the day as she drives through a redwood forest toward the beach in Santa Cruz. And then move on to a clinical trial that can still buy us a cure. But with Sophie in the state she’s in now, that’s unlikely. I don’t think I’ll ever know real happiness again for the rest of my life if she’s not in it. Several days before Christmas she developed pneumonia and a 105 degree fever. We rushed her to the ER for antibiotics and oxygen. Since she is now terminal, our wishes took precedence over what the docs would usually push us to do- stay in the hospital for monitoring and nursing care. Sophie hates it there. She gets depressed and poor sleep there (and so do we). So when we asked if we could do the meds and oxygen at home, they agreed- knowing that if this is the end of Sophie’s time with us, we should all be at home together if that’s what we want. I’m glad she’s not in the hospital, but I also don’t want this to be the end. There’s more to do still. Come on, chemo drugs, do your stuff. Work for us, antibiotics! And make this a merry Christmas for our family.
The day after Thanksgiving was clear and bright with no icy blasts of wind like we had the past couple of days up on the mountain. We took advantage of our hillside location and went sledding! Sophie was too uncomfortable to stay out more than 5 minutes, but that was fine with me- I just wanted to watch the kids sled a few times and then hurry up to get some hot chocolate! 🙂
We enjoyed some serious relaxation. And when the kids wanted to go bonkers, they went downstairs to the playroom/pool table area. With Sophie being in a quieter, less energetic state, I stayed upstairs with the babies and adults. It was so nice to spend time together! All the cousins (minus the babies):
All Karen’s grandchildren:
Fun activities: Gingerbread man craft and Playing Go FishTime to go play in the snow! Yes, we got snow! That’s the next post though… 🙂
Lucas has been trying hard not to smile at the camera lately, and is thinking more and more about being a big kid and NOT a cute little kid. Laith and I were so thrilled when he decided (on his own) that he wanted to wear his giraffe costume after more than a year of not wanting to dress up cutely. Naturally, Sophie wanted to be just like big brother and wore her last year’s Halloween monkey costume and also the lion costume. I swear I’d dress them up like stuffed animals every day if they’d let me!
Our one and only family hike this autumn. We miss being able to do this, but are thankful we got out at least once. We picked a half-mile hike right off the Blue Ridge Parkway. Sophie wasn’t particularly happy about it so she and Laith bailed out as soon as we got to this view. She did enjoy the car ride views and small animal sightings though.
A few pics of the kids looking cute!
Sophie’s Nutbutter recipe (she chose the ingredients, taste-tested along the way, and decided when to add more of something or something new!) We made this for Sophie’s starve-the-cancer-cells-of-sugar ketogenic diet so it’s super high in fat and soooooo delicious!
1/2 cup of pecans, 1/4 cup roasted salted cashews, 1 Tbsp coconut oil, 2 tsp cinnamon, 1/4 cup of Lily’s (sugar-free) Chocolate chips. Combine in food processor until the ball of ingredients rolling around in there starts to become smooth and uniform. Don’t over-blend. Chill in fridge for a more solid consistency.
She actually picked to add a 1/4 tsp of salt too, which she thought improved the taste but that made it too salty for the rest of the family. We omitted that ingredient the next time we made it. 🙂
Are cats really like this? Gigi’s personality totally cracks me up.
A cool art installation at the Architecture School: Art has become an increasingly favorite activity for the kids as it’s often too cold (and wet) outside to play or too bright for Sophie’s sensitive eyes (even with sunglasses). Plus it’s one of the few things the kids can still do together. Sophie has made one of these bracelets for herself, Laith, Lucas and I and has moved on to making more for our extended family. We’ll give them to you when we see you (or mail them) 🙂One of Sophie’s last hippotherapy sessions before the winter break: I see you Kitty! Lucas loves his rock collection and arranges it often. (Thanks Meemom!!)A nd I’ll leave you with this: …I bet Laith likes the first picture the best 😉
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.