old pics

If you know me, you know I love looking through old pictures. The problem is, I get sucked into them and then 2 hours is gone.  But the kids are drawing and I just feel like doing nothing.

We bought our house (built in 1975, from the original owners) May 2012 and remodeled for 7 months before moving in. Just before moving we found out that Ruby (who was roasting in my belly) had a growth on her neck.  We moved in in November and spent January and February finishing the basement, which we rent out to an extended family member.  Looking back, that was a really hard time. Physically and mentally very challenging and tiring. But we would do it again.

An event

I'd rather be on the giving than receiving end, but since we are where we are, I want to share the love for Ruby. We have no idea what is in store for her, or us. What if this med works? What if it doesn't? And more than 1/2 of kids have side effects after cancer treatment is done. Donations, oh, donations are so humbling. So appreciated. But I hope more so that this event will help those going feel grateful for their lives, their kids lives, and their health! This event is being orchestrated by a childhood friend, Abi C. Hammer. Thank you Abi!!

You are invited to join in coming together for an hour doing a workout that will have your energy H⚡️GH. There is no requirement to pay, you are simply invited to donate to Ruby.

Join me, Dru

(@highwithdru), and Marci (@lilmuffinhighfit) on:

May 7th 2016

10:00 a.m.

3408 Celeste Way

Millcreek, Utah

84109

Cycle 1, Dose 2

Quick post while I have a few minutes before school is out...

Globbed on some lidocaine cream to her port site about 7:45am, covered it with a square of  'press n seal'. Got Siri off to school, dropped Jane at a preschool friend's house (thank you!). We left a little after 8, needing to be at Primarys at 8:30. I knew we'd be late because of rush hour traffic, but we didn't get there until 8:55. Ooops.
Child life specialist, Rachelle, came to talk with us and Ruby soon after we arrived. Ruby got VRE when she was in the NICU as a newborn, so whenever we are at the hospital, we are usually put in a room fairly quickly. Its a bacteria, and although its been on/in her body, its never manifest itself. Being on special contact protocol, doctors/nurses are supposed to 'glove and gown' before coming in the room.  Ruby can't be officially cleared of it until 5 years after getting it, which seems silly. Why not test her now to see, or however they do it? It would save a lot of hassle and gloves/gowns. Anyway, Rachelle went over what was going to happen as far as having her port accessed. She was on Mark's lap, distracting her with toys. She seemed nervous, but the nurse was great and had it all done before Ruby realized anything had gone into her port.

Met with Dr Holly. Yes, we'll do a scan after cycle #2 (so in 6 weeks). So....unless she shows any side effects, we can keep enjoying life as normal, be innocent and blissful for 6 more weeks. Then we'll see if its really helping or not.

Went back to the infusion room, but once again she was in her own room. Watched a lot of shows, read some books, had a lot of goldfish :) I met a mom and dad with their daughter who was diagnosed in December. She has 3 rounds of chemo left. They come every 3 weeks from Montana and stay at the Ronald McDonald house. So admire them and glad to meet them. Our nurse Sarah was really cute, she just seemed to have a happy spirit about her.  I was excited to tell Ruby she was done, but that was not a good idea. She cried and cried, because that means to her that its going to hurt. Anything with stickiness of any kind, like a bandaid or whatever, means owies to her. I asked Sarah to go fast, and she did. Ruby was done crying by time we got to the car.  Sure do love when Mark comes, I love seeing he and Ruby together and he just knows how to distract/help/deal with her.

spring time animals {Sunday evening}

holding a tiny lil bunny

Austin and the cat

 handing over the baby bunny

Jane could have stayed a good long while running with this little horse named Oreo

thank you Jeff for letting us come be with your animals!

cheese

Does it seem like forever since I've blogged? It has to me :)  Glad though, because that means nothing exciting has been happening. Oh, besides petting a baby miniature horse and holding baby bunnies tonight. That was awesome and the girls were in heaven. Thank you Brady and Amanda, loved being with you and Austin tonight. Ruby doesn't know Amanda, but you would have thought they were BFFs. I was even able to get Ruby's last gross steri strips off her port incision while she was showing it to Amanda. Tears...over me taking off an old nasty band aid. Glad its finally off though. Mental blocks with a 3 year old are hard.

super cheezer double chin pic holding the tiniest baby bunny!

 Nothing like a good bike ride in jammies on a warm spring day.

Cheese. She loves stealing the cheese!

Warm enough, but not really, last week to turn on the sprinklers

short cut through the park to see Siri at recess. 

Lucky to spend time on a belated birthday date with this lady. Debby Lives in my neighborhood/ward and I've made myself her adopted 9th child. p.s. go visit the Penzey spice store and Indian restaurant next to it in Draper.

And Friday we went on a "field trip" to the hospital. I had talked to a child life specialist about goals beforehand-to help Ruby feel more comfortable and to let Siri and Jane feel more involved and understand what Ruby does when she goes there. She'll work more individually with Ruby when we go this week. Rachelle was amazing and the girls had a great time!

I was at a church activity for a few hours Saturday morning. Mark was with the girls and cheered Jane on at her game. Ruby was going commando all day, but maybe that's a benefit of mom being away ;)

Jane was watching hockey and hanging out with Mark while Ruby napped and Siri went to hike on rocks with Sam and Uncle Dan 

I love her in these jams.

I ran into a friend from high school at Great Harvest this week. As I saw her, it was so easy to go up and give her a hug, get right into life. She's been reading my blog, but we don't ever see each other. I am grateful for this experience, Ruby's life and in turn our life, for bringing people closer to us. I love that we can skip shooting the breeze and talk about how life really is, for us and for the people we talk to. I love the honesty and the emotion. I do not love being a focal point, but I do love what it entails-visits from friends I don't see as often, comfortable crying in front of people, sharing that emotion, being more aware of others situations.  Last Sunday after I had posted, I questioned if I should keep updating so often. Who do I think I am that people want to hear what's going on? But she helped me feel like yes, its worth it.

And I need to share. This guy. Mark. My husband. Started dating him when we were 16. We knew each other for a year or two before, but I didn't like him like him, but some of my friends did. Then I slowly got jealous of my friends because I was the one brave enough to call him, because I didn't like him like him, but they were spending more time and talking to him when we got together. Well, once we started dating I kind of flipped a switch and never went back. He's had my full complete heart since I was a teenager. A teenager!  Still does. Anyway, what I really meant to say was how thankful I am for Mark. I've been wanting to be able to see Siri and Jane in the same precious view I see Ruby. This past week Mark made comments like "Isn't Siri amazing at the monkey bars? She is so strong!" and "I love watching Jane play soccer, she just goes all out". His comments here and there have helped me focus on each of our kids and value who they are, right now. To enjoy them, be proud, take time to see them. I'm so ready to take Siri out of school so I can be with her more! Looking forward to Summer time.  I've also talked about "the greatest blessing" referring to Ruby going into 100% remission, or "worst case scenario" as Ruby passing away. And he's asked "Is that really the greatest blessing?" or "Is that really the worst case?"  Geez Mark, I never thought of that. And that's the thing, he helps me see beyond today and my bubble.  That there could be more if we'll keep our minds and hearts open and trust in God (or whatever higher power you believe in).  Mark I love you.

Next visit is Tuesday for dose #2. This will be our first regular appointment as far as just a visit to see Dr Holly and get an infusion of Nivolumab (no surgery, scans, etc). Not sure yet, but I think she won't do another scan to check the tumors until 2 cycles are over (which would be another 6 weeks from Tuesday). 

chatting

I loved yesterday.
We got to see friends and people we love. Things were full and lots of visits a couple weeks ago, but things die down. I've felt a little reclusive and wanted to see people. Yesterday I went to the gym with my brother Matt and Sheri. We went for a walk and saw neighbors. Lunch with a friend and her family. An errand to Holladay and stop at the Baking Hive for a treat and a hug from Elisa. Jane's soccer game and a visit to cousins to see their new puppy. A stop on the way home to one of Mark's kindred spirits, Mike. Dinner with old neighbors who have moved to a new house and have a brand new baby boy. Sometimes mowing the lawn if fulfilling (I'm serious) and sometimes finishing a project, book or feeding your spirit it what you need. Yesterday was just what we needed. We were missing miss Siri as she got to stay at Grandma Carol's this weekend. My mom works full time in Draper and lives in Kamas, so time with her is precious. For Christmas Siri chose for a sleepover, so she's been getting great one on one time and we'll go pick her up this afternoon.

Jane doing UPSTART 

lately she's been choosing the trike over her bike

driving to soccer

And wanted to share just a smidge of the kindess and love that has been shared with us.

a candle lit for Ruby at St.Patrick's Cathedral

A hand made quilt

A beautiful necklace for me to wear with my girls' initials

not pictured:financial donations

A hand knit shawl from a friend who's home and mom 

I spent a lot of time with in high school and college.

"Shawls are symbolic of the inclusive, unconditionally loving God. They wrap, enfold, comfort, cover, give solace, mother hug, shelter and beautify. The patter for the shawl uses a three stitch pattern symbolic of our loving Heavenly Father, Jesus Christ and the Holy Ghost"

Last night I read and read on this Facebook page I've been added to of moms in Utah that have kids with cancer. So. Humbling. Moms who have recently lost their little darling, who have been by their kids side battling cancer for years. Moms who don't have much support. So many stories, all of them valuable. 

This past week an awesome grandma neighbor watched Ruby and Jane for me while I went to the gym. When her husband was 33, and they had 5 kids-the youngest just one month old-her husband passed away from cancer. Jaw drop. She's remarried and an amazing woman. I love to be around her. She is uplifting and  has insight that she's gained over time and experience. I love her understanding and kindness, her belief in me and her kindness!

And how is Ruby? Great. No side effects to note. She did stay in her bed all night on Friday, which was a big deal :) Next dose is April 26. Love my girls and Mark. Looking forward to a sunny warmer week.

Photos

Amanda Flamm, Millie's Mom, coordinated this photo shoot for us. The week we took them was crazy. Lots of time on the phone with doctors and insurance. Thinking we'd be leaving for California soon. Not knowing how Ruby would respond to treatment.  But getting family pictures was at the top of the priority list. So thankful for Jen Fauset and her generosity in using her time and talent to take these for us.
With Mark being a phototgrapher, we don't get much time with all of us on the same side of the lens. I love seeing us all together!

#TeamThack family pics

Manners and Spoiled

It's a fine line to balance when a child has any sort of limiting issues.
I, and others, want to love and care and make Ruby happy. I also want all the girls to have manners and be thankful. They have been spoiled with lots of gifts, and they're becoming a little immune to the generosity.  Today I helped Ruby finish her breakfast (like, putting the bite on her fork and into her mouth for her-the things you'll do to get them to have food in their bellies), but made her finish cleaning her room by herself. I noticed that I've been leaning too far on the spoiled side of things. The other girls could certainly pick up their room without so much complaining or whining that they need help.  It's not that I want my beautiful girl, who also happens to have metastatic melanoma, spending her days cleaning her room. I do want her to have good habits and make progress towards responsibility and independence.

On Monday night I noticed the band aid on her neck was looking a little gross and needed to come off. She hears us talk about it and starts crying. Mark is the softy, so I told him to hold her (while we put on a show and gave her peanut m&ms) and I took it off, along with the 3 electrode stickies. Not as bad as all of us thought it would be :)  We then went to Macey's grocery store and got ice cream cones, then to the park to hit some baseballs, kick the soccer ball and play on the playground. As Siri and Ruby were racing to get the bat, Ruby tripped and fell, face first onto the bat. Insta bloody nose, but not too bad.  We are SO thankful that life is going on as normal, she's not having any side effects so far. I imagine she may get some as she gets more doses, but we are enjoying her normalcy for now.  She is still waking up at night a few times, and is grumpier than usual, but nothing crazy.

Before I learned about Ruby's port, I didn't know what one was. So, here is a video that can help you understand what a port o cath is. I haven't felt comfortable taking the girls to the gym daycare, partly because of Ruby's recent surgery and not knowing how she'll feel/act, and the germs. If you get a fever with port, it can be serious. So, the less bad germies I can expose them to the better. Keep in mind I do take them to the library and church-germie places, but less gross germie places.

Yesterday was beautiful wasn't it?! I love this window of springtime when the weather is in the 70s, flowers blooming, birds are singing (except the ones in the vents in our attic-those ones drive me nuts ;)  I couldn't stand to know Siri was in her school class room (that has no windows by the way-blah!) on such a nice day. Liz came to be with Ruby, I dropped Jane at school, and picked Siri up. We went to Lisa Falls, a short hike up Little Cottonwood, and then went to Wildflower Park. Good to be with just her. When you have more than one kid, one on one time is valuable. When I was with her I asked if she was afraid to die (because I think about dying, and what she thinks about dying). She paused and said "No, because I know I'll be with Jesus". I love her simple answer.

In the early evening as I started making dinner, Siri Jane and Ruby played and played peacefully together. I am often surprised at how well they get along. Plenty of fighting, but mostly having fun playing school, scooters, tea party.

Last night I went to a baby shower for my cousin Kirsten. I LOVE my Fetzer cousins!  I love seeing my mom and her sisters huddle together and chat :)  I love celebrating happy things. I love knowing what is going on in each others lives. My cousin Marlies is having surgery next week for cancer she has been battling for over a year (all while taking care of a toddler, ankle surgery, diabetes, celiacs, and everyday life).  I love talking to her and being uplifted by her. She has this sincere twinkle in her eye, rosy cheeks, and smile that make you feel better.  Keep her in your prayers.