Ruby update

Already 3 months since Ruby's last scan. We did a chest CT today and her usual infusion of Nivolumab (Opdivo).  I'm thankful she's doing well, but there is some new growth. The 2 bigger ones in her right lung have grown a bit. In Jan 2017 the biggest one was 20.3x27.1x8.14 and is now 19.9x38.2.17.3. So the bigger ones have grown, and "no new right or left-sided nodules are seen, most of the remaining nodules are stable in size or minimally increased".  Her oncologist, Dr Whipple, is going to get a few other opinions to see if there's anything we should change, but for now we're staying the same course.  

I'm still doing my best to feed me and my fam as best I can and try to keep fun, love, happiness and peace in abundance. Its hard with 4 little kids! but its worth all efforts :)

1/2 marathon

I ran my own 1/2 marathon last Saturday. I'd made it a goal to do a race after I had Annie. I took what I'd need in case I did the whole thing, but thought I'd stop after a couple miles if I felt too sick or gunky respiratory wise.   I think my body was happy to be out! A perfect morning for a long run.

Icing Smiles

Icing Smiles
Click on the link above to read about them.
Amazing.

I heard about them through other cancer moms. A couple months ago I looked into having a cake made for Siri. Little did I know that the cake would be incredible and the baker even more amazing!  As we were texting back and forth, she accidentally text me in Italian. So all I knew about her was that she was from Italy, and volunteers to bake cakes through this foundation. I love her already.  Well I drive to the pick up location (thankfully Liz was with me to help hold the cake on the ride home!) and it was Sweetaly!  A gelato place I've heard rave reviews about. The baker was Laura, one of the sisters who owns the business. Such a kind and talented woman. We bought a few little extras and then were floored when she brought out Siri's cake. Siri had requested a Calvin and Hobbes theme, vanilla and orange type flavors. I didn't have high expectations...I mean, they're making it for free, and I don't know how many of the volunteers are professionals.

This woman is a pro.

It was exactly what Siri wanted, and it had a serious wow presentation...but even better? The cake was SO GOOD, complete with multiple layers separated by Bavarian cream. The cake was enough for 30 people and weighed at least 15lbs.

The original Sweetaly is the one on 3300 South and is where they actually make everything. They don't have as many gelato flavors as the other stores because its a small retail space, but that's where you'll find Laura. Go visit her!

best worst sick day and a birthday

102.9 fevers yesterday. It broke last night so I'm feeling better now. Yesterday, was hard. Yesterday was also awesome. When I started feeling sick Tuesday, my neighbor, who I haven't talked to in a few weeks, called to see if Ruby could come play. Yes, please and thank you! So helpful. There could be no more literal way that my prayers could have been answered. God is aware of us and we are each others angels! It sounds so cheesy and non tactile, like fluffy feelings or something but its real.

Yesterday we saw another neighbor who offered to have Ruby so I could rest while Annie took her morning nap. As I was offered help, it made it easier for me to ask for help. I hesitated and actually cried because I was embarrassed, but I know I needed help. And my dear Liz crashed on her mountain bike yesterday and got a concussion so we were both useless :)

I asked Mark to not go to Young Men's last night. He made dinner (Swedish pancakes for Siri's birthday eve) and took Annie with him (she was being a screaming boss baby) to Ruby's soccer practice. Jane got a ride to soccer practice, 2 neighbor friends came to help clean (I knew I needed help when the floor was so dirty Annie was choking on stuff but I didn't even have the energy to vacuum), and another friend came to help decorate for Siri's birthday after the kids were asleep. I tried to spread the word its Siri's birthday today to help her feel special. 

Once again, the hardest times also bring out the best and help me to be grateful.

Today our dear Siri celebrates another birthday. I am thankful to get to be her mama!

I love when Mark writes poems, he has such talent and love

blerb

I got a real bad virus of some sort yesterday so right now I fee like bleh. Congested chest, aches, chills, intense headache at times. Annie is loving it though since I laid on the floor most the day with her.

Scheduled Ruby's next scan. This is the first time that its come up quickly, I had forgotten to schedule it! She'll do the "pirate ship" (chest CT scan) the 19th. She hasn't seen a dermatologist since 2015 so she'll go the 18th for a check. Sadly Dr Holly has moved to Tennessee to work at St Jude, but the good news is Rubys new doc, "Dr Nick" (Nicholas Whipple) just came from St. Jude. Its been not my favorite switching doctors but I appreciate a new set of eyes and his thoroughness. I'll miss Holly's friendship and understanding as a mom.

We were in Colorado Springs this past weekend for the 4th annual Pediatric Melanoma Summit. The drive there on I 70 was long but really beautiful. It was great to meet other families, see what the diagnosis is, treatment, where, etc. The woman to headed it all up works for the MRF but also has a survivor daughter. She drove all the way from soaking Houston, she's amazing! Ruby was the youngest patient and the only stage IV. She adored a 13 year old girl named Marit who is a survivor. Our room had a view of the Air Force Academy. Annie got sick while we were there poor girl, if I have what she got I feel so bad for her! She seems better but now has a rash on her face/neck/back.

 I'd been excited about this trip for months, but the night before we were to leave, I turned into angry mom. I realized how upset I was, putting in all this time and effort because of stupid cancer. We have learned lessons and met people we never would have, and I'm so thankful. But there is always that sadness that my mind touches on once in a while that this could take Ruby's life.  And I think at this moment as I write, I'm more worried since her scan is next week. Last night she came in our room crying that her legs hurt. My mind jumps to...what if it has spread?  Mind games are hard.  I count my blessings daily that she has felt well this whole time, I'm so thankful for that!

they have super cute socks and ties, go get some!

The brand Coolibar gave each cancer cutie an outfit and they did a fashion show

we both enjoyed a break from all the fun

thank you Kris for your visit!

first day of preschool!

and more scrunch face from our fluffy hair snoog

Childhood cancer awareness month

September=Childhood Cancer Awareness Month=the color Gold

scrunch face

Last year at this time I was pregnant, now we're all in love, swooning over Annie and her scrunch face and her little teethies coming in on the bottom.

School has started, Siri especially seems much more grown up this year. I love that she was excited to run for student council! She was chosen as one of two kids to represent her class. Feeling very proud of my girls and thankful to be their mom. Jane is super motivated to be one of the top earners in her grade for the PTA fundraiser. Yes it pays for field trips, art class, etc, but more importantly, for her, she wants to be one of the kids that gets to ride in a limo to chick fil a for lunch!  Soccer season has started for Jane and Ruby. This is Ruby's first season and although she wasn't in love with the first game (it was so hot!), she did score a goal followed by a trip to the store to pick out her own pack of gum :)  She starts preschool this week. This is a huge day for me too. It's a day I didn't think we would see for her.

I loved the ensemble Ruby picked out for her first practice

Not only do I thank Heavenly Father for this blessing, but also that I'm ok. Mark and I had an annul visit to the dermatologist. My sister Liz has had melanoma removed from her arm when she was only in her 20's. Mark's dad and sister have had melanoma removed. And Ruby. Lots of reasons for us to make a visit. Last year the dr burned off a pink spot on my forehead, no big deal. It went away and looked like normal skin until a few months ago. She decided to biopsy it this time. It was a little more pink, but didn't itch or bother me. It was small, maybe half the size of my pinkie fingernail. I got a call about 2 weeks later. The woman was very calm and no big deal "it came back basal cell so let's get you scheduled to remove those cancerous cells". Uhhh...she just said cancer. To me. "Can I call you back?".  I needed to have a moment. Yes, basal cell (the first stage of skin cancer) is very common. But it still scared me. So last Wednesday I had my annual physical (I had scheduled it months ago) and then made my way over to the dermatologist to have the Mohs surgery to remove the spot on my forehead.

As I walked into the office, there were multiple people sitting, waiting, with folds of gauze and tape on their recently operated on faces. One above her lip, a couple forehead, one on her cheek. All women, all older than me. Much older than me. I'm too young. No, not really. I spent all my summers at the pool, sometimes with sunblock on, lots of times not. I remember burning, blisters a few times, the skin on my nose peeling. I didn't know. I didn't realize how dangerous it was, that the consequences were long term.  I want to teach and protect my kids, and sometimes it also means some scary parts in there too to get the point across.  And I see that I can be better, more careful. Hats more often, umbrellas (lets get the parasol thing popular over here in the USA!), sunblock more often, better protective clothing, saying no to being outside at peak burning hours (summer or winter).

I really want to see insurance cover an annual visit to a dermatologist as a preventive visit. I don't think my family practice dr would have seen the spot on my forehead and think it should be biopsied. So although it will cost you an extra co-pay, go schedule a check up! And just like we all know soda and candy aren't good for us, neither is a tanning bed or a day at the lake without a swim cover.

Our dear friend, Alexis, passed away last month from Melanoma. Her "celebration of life" was on August 25th. I loved it. I love that she planned all the details...she chose who she wants to speak, the music, one of her caramel/chocolates for each person to have. It was beautiful and happy. I'm thankful that I had all the girls with me the last time I saw her, and that we were able to say our good-byes through text.  I asked her to watch over for Ruby for me and she replied "I promise with all my heart. She's about to get one hardcore watchdog guardian angel!"  People and relationships were important to Alexis, I love that about her. You can follow an instagram account and hashtag set up by her sister called livinlifeforlexisjane. Alexis said "My wish for everyone is to live freely, love fiercely, share laughter and spread joy". Alexis donated her body to Huntsman for research so that even if it helped just one, it would be worth it. She talked about "that one" being Ruby. I love you Alexis!

We've been soaking up the last few pool days...

this lady even went off the high dive for the first time last week!

Date night with Mark (thank you Aunt Liz!)

We were gone for 5 hours but it felt like 1. 

So good for us to have some continuous conversation and time together.

And an early morning run. Makes me happy.