thack smack: February 2018

I've made some phone calls and told the people I could in person. I'm thankful to have so many who care and want to know. Thank YOU for caring, for checking in on us via in the interwebs.

It's good news :)

I got Ruby's port cream on about 7am. Mark and I were up before 6, yet Ruby and I were still late getting out the door for the hospital. Got her port accessed and then downstairs waiting for the scan. While we waited Mark joined us (thank you Mom for being with Annie!). Because of errors in paperwork and a new system we waited about an hour before going back. The scan was quick and easy. I wasn't too nervous as we waited for Dr Whipple to come in. After so many rounds of scans and waiting for news, I've gotten stronger at preparing myself for whatever is said.

He said hi and was trying to log on to the computer and said "guys, they're melting away". Jaw drop. I think he was so excited he couldn't wait to show us the images or log in he just wanted to share the news. Whaaaaaaat?!

A section of the official report:

The large anterolateral pleural-based lesion in the right lower

lobe, on axial image #22, measures approximately 1.4 x 1.1 x 1.2

cm, decreased from 2.1 x 2.6 x 3.6 cm

The smaller scattered nodules remaining in the lungs on the

prior study are now quite small or resolved. No new nodules are

seen.

When we started the trial for this drug, Entrectinib, we had seen results of other patients who had tumors go away in this short amount of time. But they weren't Ruby, so I had reason to wonder if it would work.

It's working! To give you an idea, the largest tumor in her lungs is 9% of what it used to be. 9!!!

Thank you, and especially your family and children's prayers on Ruby's behalf. We feel blessed and thankful. We feel undeserving when we know and see so many other kids who haven't had a path like Ruby's. We will do our best to continue to be deserving of all that we've been given.

It's a great day :)

Love you!

Ali

Its often hard to have healthy snacky convenient things,

thank you to RX Bar for sending Ruby some love!

Ruby's biggest fan :)

If you bring out the suit Annie gets psyched because she knows its time to play outside

after school snack snarff

love the neighbors swing

family pre-scan fun last night (thank you Jenlee for the tix!)

As I blog right now I have a documentary going on in the background about cancer...about people who have gone to Germany to do non-chemo treatment which included Hyperthermia (direct heat to the tumor or area), oxygenating their blood, and IV minerals, etc to improve their immune system. I've listened to, read, called, watched, so many different things like this. Why? Because if I were the one with cancer, I'd want to know what/if other options there could be.

Its a tricky rope to walk though-making changes, spending time and money, on things I don't know will work for Ruby. Every body, every cancer, is different. If it were a case of a woman with breast cancer, there would be a well paved road to follow. But with a child with melanoma, there isn't. So I try to pick and choose things that I know would help, cancer or not. Trying not to do screen time before bed, sprouting seeds/beans/grains, being outside more, extra vitamins. I want to learn more about the basics-air and water filters, etc. If you have advice or suggestions, please I'm all ears :) The other big challenge (which I know I sound like a broken record on) is saying no to #allthetreats. The grocery store samples, preschool, church, friends...processed food and sugar is everywhere and I get so disheartened sometimes. I know people have good intentions, but I wish it didn't have to be so dang hard to keep out the junk. And then the girls think I am the bad guy when I tell them they can't have something offered to them. We have gelato, we still enjoy treats, be assured by no means are my girls cut off from enjoying dessert, pizza, etc. I'm just trying hard to keep those times special, not everyday.

Its been nice to walk to the park, store, bike rides in this crazy warm winter weather, that's more like spring. My knee, back, and a few joints in my fingers have been bugging me since December. My general family practice dr things is a side effect of a virus I may have gotten from the kids and should go away but can linger for months. I really hope that's the case! Liz's back has been giving her trouble, but the good news is shes learning how to move and get better, and passing on the knowledge to me. The other night we went to the gym and did a "workout" but had a lot of stretching/mobility type stuff. When we got the car I felt like I had just done yoga! Then we ate at Core Life Eatery in Sandy which we both LOVED! Chatted with the two owners and I wanted to know their story. One of them used to be the president of the Sonic fast food chain. In a nutshell, in good conscience he couldn't keep working there, knowing that the food they were providing was so unhealthy. They wanted to make a menu where you didn't have to study and skirt around the edges to find what was healthy, because it was all a good choice. Its technically a franchise from New York, but he said they've changed the menu dramatically. Appreciate motivated people like him so we can enjoy a meal out.

Ruby has a scan this Tuesday. I thought it was just the usual chest CT, but the study wants her to also have an abdomen and pelvis scan too. I'm hoping we can keep the time/date the same even though we have to do more scans and that she'll be fine not sedated. Am I nervous? Yes, but not consuming. I can sleep, go about my day, but much of the near future hinges on Tuesdays results. If its working, we'll continue and start day 1 of cycle 3. Keep all the plans we have-preschool, plans for her 5th birthday next month. But I'm getting used to having plan B, and being ok with plan B, its still a good plan.

I know that God is aware of me, of her, of us. I feel confident in our family's ability to stick together, rely on each other, stay strong, communicate, be honest, and be happy whatever the future holds. I'm so glad we don't know what will happen. It could go both ways, you could be afraid because you don't know, but for me, it helps me act on my faith, keep enjoying the sunshine. I'll deal with what comes, when in comes. I've said this before, but Mark has really taught me to let go of worry. When we were first married I remember many nights crying in bed, worried about money or kids or work. All important, but nothing my tears can solve. Feel the feelings, but keep on keeping on because that's a lot more enjoyable and helpful.

Ruby and I got to be part of lecture Dr. Whipple was over with about 150 first year medical students. He said he'd also have a teenage patient there too. When we showed up, we were so happy to see the patient he chose was a 2nd cousin from Mark's side of the family! We've met her, Kate, just a couple times before. She's a darling well spoken 16 year old and doing really well. She had to go through really rough chemo and traveling out of state. She's been through a lot but is as happy as ever. I was thankful to be there with her, sharing our experiences.

Sometimes I don't love all the cancer talk. In our everyday life, its is often just a side note. The alarm on phone goes off every day at 8:15am to give Ruby her med. She gets more vitamins than her sisters (I'd have all of us take them but they're pricey). Otherwise we carry on like any other family since Ruby has felt so well. Minus last week when she was limping for 5 days, but she seems better now.

So lets talk about the rest of the fam :)

Mark had let off the gas on photography the last couple years, but is putting more energy into it now. Sometimes the grass looks greener, or you just need some times to do something new, to learn and grow. But he's excited again about photography and I continue to love and admire his gratitude for the basics-to think and learn and choose and work. The other day Jane had a friend over to play, she'd asked Mark earlier if he could come jump with them and he said maybe. When he took a break and went out to play, she was beaming. He made her day. I've never seen anyone soak up their baby so much. Mark sometimes seems to be breathing in Annie as he snuggles her before putting her down for a nap, or letting her sneak into his office and playing on the floor with her. That little turkey isn't walking yet, but she found her way up the bunkbed ladder onto the top bed, without us knowing! So grateful she was ok!

Siri was sad when her latest series of books was over. (for her its books, for me its food ;) But she's started a new one and likes it so far. Jane got the first book of the Cupcake Diaries for Christmas. Since then we've read together (Mark's the reader) almost every night and we're now on book 4. Siri's had lots of friends, new and old, to play with lately. She's been much more upbeat and happy. Oh how I pray the girls will have good friends as they grow up! Its makes a big difference-in how they act, what they like, etc. Jane had a date with Mark at Brighton last month, so Siri asked for one. Mark got 4 free tickets from Deer Valley and gave them to me. Siri, Liz, my mom and I went last Wednesday. Happy day! The weather was warmish, not crowded at all, skied fast and enjoyed being together. Of course now Ruby is asking for a date-which I'm happy about! Love that my girls are asking for ski dates :) Jane is loving soccer and the art class she's doing once a week after school. She's the first to help with Annie, still our best/least picky eater, and is very aware of her surroundings. I love her empathetic heart.

I'm keeping up this household-which if I were to describe my every day may sound crazy or busy, but it's just my normal, so I don't like to say I'm really busy. I'm just very...active with my young family :)