my brother and my dad

I didn't realize I had lots of dark hair as a baby...makes sense that Annie did too!

My dad was an avid photographer. His old photos are all in slide form and my brother, Matt, has been converting hundreds, thousands for us all. Priceless. Thank you to them both.

Christmas and Wednesdays visit

Christmas

Christmas when I was a kid (red coat on the right)

Christmas Eve.

Thanks Liz for having our craziness over at your house!

Went for a basic visit to the clinic Wednesday with Ruby (usually Tuesdays but it was closed because of the holiday). It was really crowded and we waited an hour just to get checked in. Oh I sure hope plans are in the works of relocating/remodeling the hem/onc clinic at Primarys.  The waiting area is tiny and they just do not have enough rooms.  And no windows. always drives me crazy that there are no windows.  Because of the holidays none of the usual nurses we see were there, nor her doctor, or the study coordinator. Everything just took longer and was done less efficiently or incorrectly (like telling us no, they don't need a urine sample so I take Ruby to the bathroom. Oh wait, yes they do need one. Der!)

Venting over. We were only there a couple hours and were on our way home. B watched Siri and Jane and Liz had Annie so I really have no room to complain!  Thank you Aimee for dinner, we gobbled it up!

Its been great to not have any real plans this week. Today I took Jane to her annual check up (she'll be 7 in a few days!), went to the gym, took the kids for a long bike ride, trip to Walmart for Ruby to use up the $10 gift card that was burning a hole in her pocket, then to see the lights while Mark was working.  I'll be glad to have the kids back in school just so they don't bug each other as much, but I've loved everything else about this break I don't want it to end!

cute little lending library at the park by our house

beautiful day for a bike ride walk today

glasses still work :)

we only go here on birthdays (they email me a free coupon) 

so they love how special it is when its their turn to go!

she was given this treat by another patient 

and enjoyed it during our hour wait!

Good things

First, I just think the world of Mark and his family. I'm proud to be a Thackeray. Being with them at the family party tonight, and the work his brother Ted does is another reason why:
http://www.good4utah.com/news/local-news/granite-park-junior-high-teachers-serve-students-a-heartfelt-holiday-dinner/886671280

Second, to you wonderful you who left a dear little note and gift cards to Cafe Rio on Mark's parents porch...You know us, so we know you, but your anonymity has me feeling like anyone could be the culprit. Thank you for your love and support, reading this blog, and leaving us guessing :)

Third, Millie's Princess Foundation is helping our family with Christmas. My cousin helped with stocking things.  To say I'm overwhelmed with kindness is just the tip of the iceberg.  Thank you.

Fourth, when I needed to exchange something at Walmart late at night yesterday and customer service was closed, the young man working stayed and let me get what I needed. Thankful for that man's kindness.

There is so much good. I love it.

Merry Christmas

Love, the Thackerays
Jane (6) Ruby (4) Siri (9) Annie (1)

super hero capes and snow

Its been a beautiful week. Snow, a short and sweet (under 2 hours!) hospital visit, no school, kindness OVERFLOWING LIKE CRAZY.

Guys. This cancer side of life has been longer than expected (hooray!), and y'all are still with us, thank you!  Not only are you still here, but more have joined our village in helping us do our life. Christmas has just taken the whole support thing to a new level. I am speechless, literally had my jaw drop at times, at how kind people have been in helping our family this Christmas. Monetary donations, Christmas gifts, things for the girls, notes of kindness.

 I get that people get on with their lives, its not your burden to worry about daily. I don't expect, or want, the conversation to be about me/us/Ruby. But other times people show up at my door or offer help that I didn't even realize that I knew us or were thinking of us. And I see all these angels carrying us and being God's hands. We're all here for that purpose. I wish I could feel like I could do more on the giving end instead of receiving.  I don't mean to sound ungrateful or rude, but sometimes its hard to allow help into my life. Mark and I feel like we need to and should be able to it all...its what most everyone else has to do!  It seems so backwards, and sometimes like we don't deserve it, that having a child with cancer has brought SO MUCH JOY. We are normal though-the girls have been tattle telling on each other like nobody's business this week. They leave their wet snow clothes everywhere and the door open all day long. They complain and we fight and I get upset and yell and then I eat my feelings. Mark is pulled in so many directions. Being self employed has its unique complications and unknowns. Annie (and all the girls) had colds last week. I didn't feel like I could ask anyone to watch Annie while I was at the hospital with Ruby because her cough and grumpiness was too much. So Mark  did his best to be dad and provider, as he often does. Maybe that's why I feel the joy, because I feel all the opposite things too :)

Ruby has felt good so far on this new drug. Our visit Tuesday was a quick port access for labs. Physical exam, urine sample and we were off! (thank you Elisa for her prize, Jen for dinner and Liz for the visit!). I try to treat Ruby the same as the other girls, which is generally good, but when she's tired, or grumpy, or has a weird rash on her face (which just showed up this morning), I need to be better at nurturing this side of her life and not ignoring it. Ruby wishes the cancer would go away. Today she told me she wanted to be free "that I would be free and home and the cancer would go away". Our neighbor, 18 year old Katy, and my sister in laws brother, Dave, both passed away from cancer in the past week. I'm so sorry. And to all those many, many other people who have lost their closest loved ones.  I talk with reverence and sorrow as I've shared their passing with the girls. I don't want it to sadden them, but I do want them to be aware of others feelings and the realities of life, and God's bigger picture for us.  Its actually as much for me as it is for them, to share and talk about it.

Anyway, once again typing late and time to get to bed sooner than later.

Merry Christmas to all of you. May you know how important and loved you are!

first time of the season yesterday! 

some tears and frustration, but more fun and good times were had!

Lisa Falls

Baking night!

Only 12 stick of butter!

I love looking back at pics and video

New treatment started today

Didn't sleep super well last night, some anxiousness about starting Ruby's new treatment. The drug was in the mail but we weren't sure if it would arrive in time to start her on it today...trying to time things just right so we could be at the hospital before Dr.Nick goes out of town, and so Ruby can get to her preschool festivities tomorrow and Thursday.

It was supposed to arrive at 8:30 this morning. 8:55 Got a call it wasn't there but should be by 10:30. I hurried myself to the gym to Liz's spin class to pass the time. Thank you Mark for being home with napping Annie and Ruby who didn't want to come with me.  10:05 got a call the drug was there so I took a quick shower, called Liz to arrange help with Annie, and got going. 

The new drug is taken daily, orally, usually in capsules, but since Ruby is young and not a pill-swallowing expert, we'll break open the capsules and mix with a spoonful of yogurt, applesauce etc.  Her port access went well this morning, but because of how the tape was put over it, it seemed so uncomfortable to her. She kept saying it hurt and was wiggling. She was very subdued.  She cried. I cried because she cried. Lots of snuggling and waiting.

Got the EGC and labs done and pills, yogurt, paperwork all ready. It was uneventful but a little intense at the same time. She said it just tasted like yogurt (I was worried it may have a bad taste). After she had some more to eat she perked up and had more energy. She had a blood draw at hour 1, 2, 4, and 6 after she took the medicine. An ECG at hour 4. We walked to the outpatient building to see some sunshine. Visited the Ronald McDonald Family room for lunch and a snack. Walking around the hospital handing out a few toys we'd brought with us.  The look on Ruby and the kid receiving the toy was JOY.  That was one of my favorite things from today. It gave us the chance to meet some new friends, wish people Merry Christmas, and bring a smile to all of us. 

Ruby watched a My Little Pony Christmas show and Monsters Inc. Played a little Uno and took inventory of everything in the gift shop.  It started out a hard morning and ended up in gratitude. A childhood friend of mine came to visit toward the end of our time there. The clinic was quiet as most people had left. She brought her new baby that I could just stare at all day. Loved the company and visit since its been a long time since we'd seen each other.  Ruby fell asleep before I'd even left the parking lot.  Mark was at an event for work, but I came home to a baby all bathed, in jammies, and ready for a bottle.  A friend had dropped off dinner. Thank you Liz, Amy and Julia! I put Annie to bed, got Jane in the bath. Ruby just wanted a smoothie. Mark got home and we had some dinner together and got the kids to bed.

Now to put me to bed :)

Ruby picked this out for me to wear today

zonked on the way home

found about 20 of these on my phone

new friends

checking my email over and over

Last Wednesday we got to go to City Creek, have breakfast at Kneaders, and see Santa and Mrs. Claus. Thank you Millies!  Mark took Annie home so he could work and she could nap. (being self employed is very challenging but has its benefits). We went to the hospital right after that to check off all the boxes so Ruby can be enrolled in the study for entrectinib.  I thought it would take maybe and hour and a half...but it was more like 3 hours. There were waves of boredom, but I was so glad Siri and Jane were there to entertain each other and keep Ruby occupied.

She had labs drawn, ECG, eye test, urine sample, regular physical exam, and I spent lots o time going over paperwork and details of the study.  We'd been planning on starting the week before Christmas, but I got an email Friday night saying the drug will be in the mail on Monday and she could start this Tuesday. Plans foiled!  I've emailed her dr a couple times this weekend and have checked my inbox too many times, awaiting a reply. I realize its the weekend, but I continue to check. Yes she has cancer, but she also has a preschool program, party, and life plans that we are hoping to be a part of.  Sometimes I feel a little worn out of cancer-life, but we really have had the best end of the deal you could ask for! So to hope she can still all these school and social things is normal for us so far.  Very thankful.

The drug is taken orally daily, and one cycle is 28 days. The first day the drug is taken you have to be at the hospital to be monitored. They do blood samples at multiple times, urine test, vitals, etc. We'll probably be there 8ish hours I'd guess, then go back the next day for another blood draw at hour 24. Then once a week for the next 3 weeks. Again the first day of the second cycle you are monitored most of the day.  I imagine we'll try to do 3 cycles and then do scans and see where we go from there. Common side effects are: fatigue, nausea, loss of taste or bad taste in child's mouth, nausea, tingling/tickling/prickling/burning sensation in skin, vomiting, pain in joint/muscles.  There's a whole long list of 'less likely' side effects.

I assume that by tomorrow morning we'll know if we're going to start this Tuesday or be able to wait until the next.

We had a great weekend-Christmas festivities with our church, swimming as a family (Annie loved it!), and enjoying each day as we follow #LightTheWorld.

I burned some food on the stove earlier today so it stinks in the kitchen still, Ruby and Annie were up in the night so I'm a tired bear, overate at dinner thus feeling chubby and  the house is so messy within 24 hours of cleaning it. Sounds like its time for bed to recharge for a new day tomorrow!

church today

girls with our friend Justin

singing and dancing while they made some black beans

ward Christmas breakfast

last Wednesdays visit

brain MRI a week ago, results came back clear