Advent

I can't even count how many times I have thought to update this blog. Thinking I wanted to wait until I had a good chunk of time to just write....those chunks of time I have to myself are often more like little nibbles and are filled by other priorities. A few minutes ago I was needing a "summary of your childs diagnosis" and came to the blog to get what I've written and was shocked!  I can't believe its been since July!

Its getting late and I don't have time to update all the pictures or share all my thoughts so I'll be concise:

We are a homeschooling family this year. I'm getting better at it and am SO very thankful for the inspiration and gumption I had to make this decision. It's a lot of trial and error and a year of experimentation and learning. I've loved being able to do so much with the girls. I've also had a really hard time doing so much with the girls :) I want to get better at knowing them so well, and working on my thoughts and feelings. At teaching and understanding them and our family.  There are so many layers to life and I'm thankful to be adding this layer of experience.

Ruby's health is doing great. Well, she actually didn't feel well today, queasy tummy and said her throat hurt, but in regards to the big picture of cancerous tumors in her lungs, she's great. She had major scans, brain MRI and full body PET CT, last month. And she did them unsedated!  This is a big deal and I'm so proud of her. Thankful that going forward we won't have to worry about sedation unless she wants it for some reason.  I am now familiar with the employees in imaging and one of them, Kat, showed me her screen. She scrolled down FOUR entire pages of an excel type of sheet to show me all the imaging scans Ruby has had since she was born. Too many to count at that moment. One day I'll go to medical records and count them all.

Siri and Jane had a great soccer season, they loved it! Siri is currently in the works of preparing for a pizza making class she and Mark are going to do. She is raising money to help buy herself a plane ticket to come with me to visit my sister Jenn's family in California. I love that she created a google doc all on her own. I think there are 2-3 spots left if you have a 7-12 year old interested in coming Dec 19th. S&J are both taking piano lessons right now and Ruby has her last ballet/jazz class this week of this session.  Annie is such a silly. She can be the most dramatic of all the queens, and as snuggly as a bear. She's the cause of a lot of noise in our house. She's a great sleeper and takes a nap for a few hours every afternoon. And even if she's not sleeping she'll hang out in her crib which I'm so thankful for since that's my time with the girls to do more focused school related work. Or to just eat food without as much interruption. 

We went to Camp Mak A Dream in Montana in August and stopped in Idaho. I took the girls to a pediatric melanoma summit in Texas in September and to St.George in October while Mark went on a humanitarian trip to Mexico. He had his camera, wallet, bag, and phone stolen the day before in California. The timing was good as even without all that stuff, he was able to count his blessings as they helped the people in Ensanada who have far less and are just fine.

We learned about what it takes to repair a chimney, leaking roof, and washing machine all in the same week. Again, a good reminder that these are great problems to have :)  Mark and I workout at a new gym close by that we love. F45. I clean in trade for classes and it its fun because Liz is teaching there too.  I've had some annoying hormone health issues and just started a synthetic T4 to see if it helps. I've seen an endocrinologist and done a few labs/brain MRI. My pituitary gland is fine but labs show my hormone levels to be really low. 

We have waited all year and are thankful for my stepdad who built some amazing bookshelves for Mark's office that are finally complete. Mark goes into the Lehi Stonehaven Dental office most days, but still works plenty from home. My mom and John have moved from their home in Marion to a house they are renting in Francis. I hope she enjoys less space to clean and grass in the yard. Its a great place for them right now. We continue to rent our basement and are thankful for Caity and Ian. It takes kind people to be ok living below a family of 6! 

Siri celebrated her 10th birthday, Mark another year older and wiser too, and Annie has moved on to being 2. Mark had a successful Man Surf Trip earlier in November, perhaps the best yet (I'm pretty sure he says that every year) and we spent Thanksgiving in St.George with some of the Thackerays.

We are looking forward to a week full of all the wonderful Christmasy things.

Montana

Thack Academy

First day of school

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.