Neigh neighs

Annie likes horses, she doesn't say too many words, but is in the animal loving phase. To her, and now to us, we often call horses neigh neighs.  Toddlers are just about the best. Really, really, busy. But still the best. I was exhausted this afternoon. I laid on the grass in the shade of our trees out front. I was on my back looking up, closed my eyes. She came over and laid on my chest. I tickled her smooth back and little arms. She is almost constantly taking things off/out/from places they should be and leaving them strewn about, or likely in the garbage (I still can't find that new nightlight, I think she snaked it from the countertop!).

Its been a while since I wrote. Probably because I'm usually up way too late researching homeschooling related topics. And I took an online spin certification course so I'm now a legit spin teacher :) Yes, I'm planning to homeschool the girls this coming year. Lots of reasons why. We'll see how it goes!  I'm not set in stone on anything (as far as curriculum or methods) but hoping it goes well and we can all learn about this together. It's kind of definitely overwhelming and I have no expectations on how long or short this will last.  But if you have any advice for me, please share!!

July in Utah. 90's and sunny. All. The. Time. The mornings and evenings are beautiful. I have a hard time being motivated to get out during the day. Annie turns into a sweat fest in her car seat (can't wait until she's big enough to be forward facing!), the sun is strongest during the day which is not conducive to fair skinned folk like us, and it zaps my, and often times the kids, energy and patience. I also think if I would just spend more time outside we'd get used to it.  And perhaps I was spoiled when Mark and I went to Alaska the beginning of this month and got to wear jackets and hats and be chilly. It was beautiful and glorious! We went with Mark's siblings/spouses and his parents. Trip of a lifetime. We were on a cruise and I'm so thankful I didn't get motion sick as much I thought I would. A little bit the 2nd day, and a few days of recovering from that rocking feeling once we got home.  So thankful for our little village  that took care of the girls while we were gone: My mom, sisters Jenn and Liz, sister in law Sheri, neighbor Sarah, and Mark's oldest nephew Noah and his wife Katie. Bless you all!

A few recaps from the summer...Camp Hobe was a great experience for the girls and they want to go again next year. I did a 7 day detox-I can't say enough how much I learned and value that experience. I had no idea how much thought, emotion and action would come of it in addition to the physical aspects.  The annual Millie's run at Daybreak was awesome, as usual. Jane ran both the 5k and the 2k and could have kept going. I love that more and more faces are familiar to me.  Loved having my sis Jenn and her fam to visit but wish I could have spent more time with them! Jenn is an amazing mom, her life is full of new and adventurous experiences. She's such a good planner! I want to be like her.

Ruby has another "hospital day" on Wednesday. Usual check up, nothing fancy. Her last visit was the first time we've ever had any issues with her port. They had to put in a solution to break up any clotting but after an hour it was drawing just fine. Next scan will be in August.

Mark and I would go to bed exhausted from playing so much!

4th of July insanely huge cake

Butchart gardens in Victoria BC

Red Fish Blue Fish in Victoria

Love that these kids got to be together while we were gone. Liz and Dan wrangled them during the Sandy city parade where Ruby got to be the Grand Marshal!

Remembering Naomi, 

their cousin who would have been 6 this summer.

Friends in town are my fav

Got to ride horses in Kaysville with a generous woman who shared her time, talents, and horses with us. Even Tinkerbell showed up! The people who take time to share with kids/families with cancer are angels.

hot chocolate in summer

Its noonish. I'm at Starbucks in Tooele. I'm drinking hot chocolate. And updating the blog.

Why? Because Ruby is at Camp Hobe (up Settlement Canyon) for the day enjoying the day being a kid with other kids and their siblings who are just like her. A port, central line, meds, fuzzy hair, no hair, so many needles...cancer has brought us into a compassionate connecting realm of life that can unite parents and kids in a unique way. We're all parents, they're all kids. We all want to have joy and safety and health. I'm so grateful for all the volunteers, time, and money that make Camp Hobe happen. Siri and Jane will take their turn but get to stay and sleepover all week-perhaps a bigger deal for me than for them! They've never done anything like this and I love that they are so excited to go.

We carpooled with two sisters we met through cancer and live in Sandy. The one Ruby's age has had cancer almost her entire life, multiple relapses. As she and Ruby chat, take each other by the hand to skip off and look at rocks together my heart melts. They are alive and happy. They have deeply empathetic and understanding hearts. I found myself lingering, wanting to keep walking behind them, watching them as I experienced these few moments through their eyes. I was so drawn to them, I want to be like them.

Kids are awesome. And amazing.

Ruby had another scan last week. GREAT NEWS!  We had gotten the impression the tumors had hit of plateau. Stable is good, its better than growth, but I had hoped for more. Dr. Whipple was gone so we saw another doc, which was fine but more generic conversation. Dr Whipple called a couple days after and said that there is only one visible tumor, and that yes, its is smaller. Wooooowwww!  There are spaces in her lungs that on the scan seem like empty space because of where tumors once were. And this last tumor may still be active, but its getting so small its tricky to measure. 

So we'll just keep on keeping on. Med once a day, next scan will be August or Sept. Ruby sprained her ankle on the trampoline Memorial Day so it was convenient to get an xray just before the chest CT. It still has swelling but doesn't hurt and the bruising is fading.

We saw Dr.Schiffman and Dr Wendy at Huntsman in May. Kind of a check in and do a little more testing to see if they could find anymore answers. Out of 83 genes tested only one had a mutation-Ruby has a BLM germ line (meaning every cell of her body not just the tumors that came from either Mark or I) but it would never matter unless whomever she has kids with one day had it too...two copies of the mutation result in Bloom Syndrome. Science and the study of genetics is a huge world I feel like is just being cracked open. Some people would prefer to know, or not know findings like this. As of now, I like to know.

Ruby graduated preschool, is jonesing for Kindergarten to start already.

Mark and I celebrated 13 years since being married Thursday May 26, 2005. We got two babysitters for the evening, thankful for Cheryl and Liz who watched the girls no charge :)  

My bike ride was zeebessst. Perfect weather and great company. Cousin Megan and I drove up Friday to Logan and stayed with cousin Erin in her beautiful new house and cute girls strewn about. I loved seeing her real life and being in her home. I think us moms often discount how influential we are. We got up early Saturday and joined the ranks of amazing women. We biked just a little bit more than we ate and socialized :)  I felt great riding but definitely could have slept or rested in bed late into the next morning if life permitted.
While I was away Mark took the girls to Dream Night at the Zoo. A new event for us, its a night where the zoo is open only to families of kids with cancer, disability, similar situations. Chik fil a provided free dinner, there was face painting and they loved it.

The Fetzer cabin (my moms side of the family) has been opened for the summer so the girls and I went to family dinner in Kamas last Sunday, slept over at my Mom and John's, then went up to the cabin for the day Monday. The girls opted to cabin instead of roast in the heat at the school Field DAy. We soaked in the time at my moms more than normal I think since their house is going up for sale soon. Sometimes you have to do the necessary. I was a tired mom by time we got home Monday late afternoon but well worth it.

Jane ran her heart out at the schools Jog a Thon and I was psyched to see Siri also clipping along at a great pace to beat a couple boys from her class :)  Jane scored all 3 of her teams goals at her last game and I often find her kicking any ball around the house/outside she can find. Siri chopped her hair for the summer! I love that she has thick long hair that novice hair braiding mom like me can do, but I may love even more that now she can easily brush it herself and jumping on the trampoline with her hair down isn't an instant rats nest.  Siri and Jane loved their teachers this year and will miss them. Thank you teachers for all you do and all you see and believe in the kids you're umbrella is over.

Annie. Annie's top hairs fit in a little piggy these days, making her even more adorable. That fact does not make her diapers any less gross though. We often find her on the kitchen table, piano, bunk beds or wrecking anything on/around my computer desk area. Outside is still her thing, where she seems happiest. Her face, as does the rest of ours, beams when Mark walks in the door. She's also finally surpassed 20#. I do love that she's still light enough to carry and swing and snuggle in our arms.

I was looking at Mark yesterday evening across the table as we had company over, chatting on the back patio. His face looked experienced to me-more lines, freckles, compassion...usually I see him the same as when I saw him in high school but last night I could see all that he's done and become and becoming. It just made my heart and face literally smile observing that my dreams are real-doing this life with him. I was obsessively in love with him when we were teenagers, before we got married. We'd spend as much time as we could together and I'd think of him when we weren't together. Now we are often ships passing in the night, taking care of kids and work and church service and and and. So I see him, but we often don't feel like we are really with each other except for snippets of the early morning or late night. even when we're both home together. We are certainly more worn out and tired in this phase of life than we used to be. And I don't have to be physically with him all the time. I feel like he is literally part of me. What I am, what I want, how I think, what I do, is part of him.  Really hoping he feels the same because this is a sure long paragraph of heart spilling ;)

Life is good. 

Hmm...which reminds me. I deleted Instagram off my phone. President Nelson, the prophet of The Church of Jesus Christ of Latter Day Saints, advised the youth to do a 7 day fast from social media. I'd debated taking a break, but that advice made it a cinch in my mind and heart to delete it. And I don't feel like I often compare myself to others or am following accounts that don't improve my life. But its the addiction, the buffer, the time spent posting and checking, that I recognized I needed a break from. I appreciate this blog to write my thoughts, and people can check it if/when they want.

I also went to a parent education night at Brighton High School a week or two ago with Collin Kartchner who gathered a panel of professionals to have a conversation and educate us about kids, parents, phones, and social media. Long story short-literally hold/hug, talk with, be with our kids more. More night games, less screens. More educating them about a responsible digital footprint, more empathy, less pressure and criticizing.

A few moms in my neighborhood/church group gathered at the park and we talked more about it. Its a village effort and I appreciate the open conversation so that we can feel like we're looking out for each other and our kids.

I am always loving conversation on improving life so weather you're a step ahead of me or a step behind, reach out to me and lets chat on the patio while the kids play. I'm starting a 7 day house cleaning, aka detox, of my body/liver/cells tomorrow, Sunday through Saturday. I'm wanting to create a better chore and meal planning system and thinking how to go about creating a family creed so that as we have an overarching theme I can work backwards so that we have more tangible goals and guide lines to get there. Advice welcome :)

last day of school June 7, finally!

Siri's face cracks me up and Jane's style makes me proud 

that she is confident in doing her own thing

after Ruby's last hospital day we went to Protein Foundry for lunch, per her request. 

She asked to go to "the smoothie place where we went with Alexis"

had to throw in this oldie of my fam, before I was born, 

up at The Meadow near the Fetzer cabin

Mothers Day this year was sincerely awesome.

The latest

Just know I often have intentions of updating this blog more....but I think we all agree that less screen time is better and there is so much to enjoy and learn and do! Spring time has been great, true Utah style with 80 degree weather a few days ago, snow this morning, melted and sunshine by this afternoon. Lots of life happening, sharing a few things...

I've finally gotten my bod on my bike outside in preparation for the Little Red bike race June 2. The one and only other time I've done the race (100 miles) was when I was newly pregnant with Annie and just a few months after we found out Ruby had cancer. Sometimes looking back I can't believe what I've done! Seriously, how did I do that. I have some journal reading to do.

Mark started a new job last week!  He had to dust of his resume skills, which ended up being fun for him, and he got a job with Stonehaven dental. He'll be doing their marketing for the Utah region, but still doing photography on the side. He's excited, I'm excited. Change is hard, but also good if you can stop swimming upstream and just go with it (that's a nice way of summing up the stress of the past few months in relation to work ;)

Ruby had a scan April 3 and things are stable, which is great! We go again tomorrow morning (can't believe its already been a month). She'll get her port accessed to draw labs. The usual EKG, physical exam, talk to the study coordinator, urine sample, etc. Sister Jane gets to come this time and I love that she wrapped up a "prize" for Ruby to give her "when she has to do her blood".  Again, so thankful that this road has been relatively easy compared to the usual stage IV cancer kid. Ruby counts down the days lately to when its "hospital day", she's excited to go! She'll have another scan in June. For now the plan is just month to month, waiting to see what happens. Not sure how long she'll stay on this med, which is good and bad. Side effects have been minimal. The weakness in her legs seems to be gone. It makes my heart happy when I see her run fast like she used to and be able to jump on the trampoline with her sisters.

The only meds Ruby is on right now is her 1 pill a day of the trial drug, Entrectinib, Juice Plus vitamins and a drop of vitamin D oil each morning. The world wide web of cancer is like a jungle. There is crazy amounts of information out there, and every case is different, so I'm just doing my best to do what I can with the knowledge and resources I have thus far. All while having 4 kids and doing normal life. I recently listened to a podcast about algae (spirulina and chlorella) and am hoping to get some for Ruby to try!  If you know of anything you feel like I should really look into, please don't hesitate to share.

Sometimes I wish I had more time to record more, the good the bad and the ugly, but I think we (we= me and whomever you are reading this blog which shows you care about us and want to know what we're up to) should catch up over a meal in person instead :)  Hope all is well. Thank you for your love and support of our fam!

Jane and I had some 1 on 1 time...she made and brought us matching bracelets to wear while we played. This evening she set up a pinata viewing party...she brought home a pinata she made at school, tied it to the apple tree in the backyard, set up chairs with assigned seating, then had us watch her smack it, then gather all the candy for herself. Kids are awesome, and funny.

soccer sisters!

Annie and Aunt Liz

I love my neighborhood!

sisters on a sunday morning

Sad that my brother, Justin, broke his neck (thankfully he's ok!)

but happy I got to take his place and ski with my nephews

trip to St.George

Siri got sick while we were there-

this is her exaggerating trying not to barf on the way home

hospital day April 3

She's a champ, but the CT scan this time around was scary/hard/sad for her.

family time

missing my gym that closed the location closest to me

Easter!

and another great birthday