Happy 8th Birthday Lucas

IMG_1179smLucas had a pottery painting party this year and it was a big success! This is also the first year I’ve been able manage and redirect all the intense boy-energy without someone ruining the games planned, crying, or attempting to run amok in the neighborhood. 😮😬 While we waited for everyone to arrive, the boys started wrestling and throwing things and piling on top of eachother so I harnessed that craziness into a game of Red Rover, a suitcase dressing race that was a huge hit, IMG_1154smand while STILL waiting for everyone to show up, an unplanned jumping-off-the-couch contest. All went well and after burning that steam they were ready to sit down and paint. Afterwards we ate pizza and cake and sent the kids home jacked up on sugar! 😉 Lucas had a great day and is happy to be EIGHT!

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Merry Christmas?

CAT_0359sm CAT_0371sm CAT_0336smWe 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.IMG_5004sm IMG_5029sm

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.

Sophie’s First Ever “Yearly Interview”

  • Favorite colors: “Thomas Blue”
  • Favorite toys: “train tracks”
  • Favorite friends: “Mommy” (she totally has my heart!!)
  • Favorite foods:  “hotdogs and chocky i-keem” (chocolate ice cream)
  • Favorite book: “If you give a Cat a Cupcake”
  • What are you really good at? “i so strong”
  • What makes you happy? “Monkeys holding cupcakes”
  • STATS: Sophie is 34.5 inches tall (5th percentile), 23.5 lbs (way off the CDC charts, but hopefully she will gain more weight as she continues to recover from chemo), and she wears size 2t.

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Late September in C-ville

 

Dad and Janice visited and helped us adjust to having our family all together again. We’ve essentially been living apart for the past 10 months- with 1-2 week stints of being all together during the rare occasions Sophie wasn’t in the hospital. It was nice to do normal things like a visit to the apple orchard!img_3440sm IMG_3436bw IMG_3433sm Lucas never missed a beat with the neighborhood kidsIMG_3410sm Sophie was so happy to be back home. And we are happy that we can start working on recovering some of her lost function due to not only the surgery but to the long hospital stays and ICU visits where she got extraordinarily weak. Here’s Laith helping Sophie with drawing:ABC_0180sm ABC_0178sm

She’s enjoying art again! She’s recently been able to paint a circle again too! Here’s Sophie at the awesome art room at Children’s National Medical Center. We had to go up for an emergency MRI when there was some question as to whether radiation had caused some swelling that was blocking the flow of cerebrospinal fluid. All was good.IMG_3687sm

And it was cool to see her neuro-oncologist had made it onto the new wall mural! IMG_3685sm

Back at home, Kitty keeps close watch as usual. IMG_3706sm

 

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September is Pediatric Cancer Awareness Month…

A good article to read: http://www.stbaldricks.org/blog/post/the-state-of-the-fight-childhood-cancers/ 1236813_541261389260953_908370976_n563960_544732732247152_523183036_n

And Sept 28th at 10am our family will be walking for CureSearch. We would love it if you would join us (wearing your Gray Matters To Sophie or Sophie’s Brain Train t-shirts)! Please contact me if you can come. You don’t need to raise donations- just a $10 entry fee. Would love to have folks to walk with and show support for Sophie and other kids whose cancers deserve to be recognized, prioritized and eradicated!

http://www.curesearchwalk.org/faf/home/default.asp?ievent=1056186

July at home

Untitled-4smIMG_2555smHere’s Lucas’s expression the moment I tell him he forgot something: his pants!! 🙂IMG_2299sm

Fun at the Discovery Museum: I’m so impressed with her improving movement and strength! She was unable to sit without supporting herself on her hands just a couple of weeks ago!

Untitled-7smLook! She can stand! Good work, Sophie!IMG_2345sm

This is how Lucas plays t-ball:
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Sophie’s liver was struggling a bit since she’d been on IV feeds for some time now. We scheduled a visit back up at Children’s National to give the nasal-jejunum (NJ) tube another try. It was going fairly well, but her GI tract sphincters are so weak now from the  chemo damage to her gut that the tube came out very easily and we were done after just 2 days. We will just have to wait for her gut to heal on it’s own and hope that it will begin to absorb calories and nutrients again as we get further and further away from her last chemo. Hopefully we can accomplish that before the liver enzymes get too too high.

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Here’s where we found out Sophie has an adhesive allergy. Good thing her tube came out when it did! The unirritated skin in the middle of the red area is where the NJ tube lay.

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We got to visit with the music therapist while waiting for the long beaurocratic discharge process to complete:IMG_2398bUntitled-3sm