Next Steps

I'm hoping for a good nights sleep tonight...it seems like its been a while :)

Dr Nick called...he feels like the trial here would be the best drug to try (entrectinib).  Hooray! Another big think to be thankful for!

We have to wait 3 weeks from her last dose of immunotherapy, so we'll sign paperwork and go over details next Wednesday. She will then likely start it the week before Christmas. She'll have to take 4 pills (or maybe 2 or maybe a powder form if possible...this may be tricky at first to get her used to swallowing pills) every day (monitored closely the first day/dose). She'll go once a week for labs/monitoring for the first month (not sure yet) and then once a month after that.  Side effects could be fatigue, dizziness, diarrhea, vomiting, constipation, change of taste...not pleasant but totally manageable.

I don't know why all of this is unfolding as it is, but I am so grateful. So far we have had the easier end of treatment and Ruby's quality of life has been preserved. So thankful.

ps Siri won her class spelling bee today! and Annie...love her

A new discovery and game changer

I posted on Facebook and Instagram a couple days ago, letting you know about Ruby's upcoming scans and need for a change in treatment since the tumors are growing. I set a time to go to the temple. Within hours, we received hopeful news. Dr. Nick called to tell us that Foundation One testing from St.Jude had come back with new info. We knew that ETV6 had mutated but not sure what it had fused with until now...NTRK3. This is a big deal!  This is a common gene mutation in infantile fibrosarcoma, but the majority of opinions still lean toward melanoma as Ruby's diagnosis.
Call it whatever you want, I just want to know if there is anything that can help.

2 drugs have recently come to trial that specifically target this gene mutation.
Entrectanib and Larotrectinib
They are still in phase 1b and phase 2. One is available at Primary's here in Utah, the other we'd need to travel for but could get it at St.Jude in Tennessee.

Today Ruby had her full body PET CT scan. Not her fav, but went as well as expected and we're home! We are so blessed to live so close, and to be HOME. I love my home and my family. Dr Nick already called and let us know that there are no new lesions, her liver is clear. There are 2 medium size tumors that have minimal growth. We are still planning for her to have a brain MRI early Saturday morning.

I pray for Ruby to have peace and comfort. For us to know what decisions to make that will be best for her. I pray that if possible, Ruby has minimal suffering. The other side of this life is something to look forward to, its the hardship and unknown until we get there that is scary.

Thank you so much for bearing this life with us. For letting us lean when we need, and buoying us up, sometimes when we don't even realize we need it.

Thank you for all you who have donated money, time, emotion, prayers, food, childcare and withstood the inconvenience of being part of our village. We love you and appreciate you.

For now we wait to hear details of how/when/where we can get her on one of these medicines and enjoy life in the meantime.

Baby girl is ONE!

Ohhhhh let me tell you how to get anyone in my family to smile: play with Annie.
Feeling left out? go play with Annie
Need a good snuggle? Annie

One month after Ruby was diagnosed with cancer, we found out babythack4 was on the way.  I was excited, we had been hoping for months for another baby. I was also scared, more of the unknown.  I love that Heavenly Father keeps us in his care and as we rely on Him and act on our faith, we'll be ok. I had no idea what a beam of light Annie would bring to our family.  We went from being a cancer family to a they-have-a-new-baby family. She's such a joy. She brings us together.


I'm thankful that she is happy and healthy. No oxygen, no meds (except a little miralax). Just a perfect little girl for us to get to love, and keep away from the cement stairs.

Annie has two teeth on the bottom, three on the top with another one about to come through. She's a crawler but stands up to everything, especially the backs of my legs in the kitchen. She loves to watch the front loader washing machine, not a fan of the vacuum though. She sleep about 7:30pm-6:30am-ish am, and takes 2 naps a day like clockwork. She sleeps with her binkie, polk a dot blankie and rabbit. She still takes bottles, but am hoping to be done with those sooner than later. She had swallowing issues until she was about 6 months old, and still has a hard time with a sippy, but we're working on it. She loves guacamole, apple sauce, and oatmeal...and cookies...and ice cream. And dirt. She loooves digging in the dirt.  She points with her finger a lot, and flutters her eyes open and closed when I tell her to wink.
I take her next week to her one year check up so we'll see if she's catching up. She's tall, but a skinny little thing. Mark calls her "Roogles".

We've had a great day today!

today's summary

As of today, Ruby's oncologist still thinks it is worth giving Ipi/Nivo a try (do the combo with Nivo at a higher dose than the Ipi and do it for 12 weeks) and wants to start it in the next couple weeks while we are waiting for more info from St.Jude. 
Nivolumab, brand name Opdivo, is what she's been on since January
Ipilumimab, brand name Yervoy, is what would be added

It was a good conversation, but also hard. I cried. Its a reality check. I just want to find something that will help.

Starting the immunotherapy combo would mean we'd want to do a full body PET and neck/brain MRI to get a good starting point. I have heard most people having side effects of Ipilumimab, and this is what makes Mark and I hesitate. I wonder if we could just have a little more time and start it after Christmas. But at the same time I don't want to chance it spreading in the meantime.

Once again, I need to get to bed. Sleep always helps.

Wait, maybe its not melanoma. What?! and other things that are more fun

Ruby and I went to St.Jude Childrens Hospital in Memphis, TN last week.  It was mostly out of my own interest wanting to go. To learn more about melanoma and possible treatments. To get another opinion on immunotherapy. To have Ruby's case studied in hopes it can help future patients.  Ruby's case is unique. But there are other kids out there with melanoma, so I have felt like it isn't unheard of.

The hospital was awesome. Amazing staff. Love those southern accents and charm. Thankful the trip was paid for by St.Jude. It's incredible how many kids and families they are able to help. The food was good. I definitely had a "we're in this together and God is present" type of feeling. The first day was really hard. Up super early, traveling, lots of paperwork and waiting, blood work, a little confusion with our hotel stay. By the last day I was bursting with gratitude, chatting as long as we could with those we'd met until it was time to go.

The purpose of this trip, I was thinking, we'd get an idea of what to do going forward, maybe start treating her with Ipilumimab also.  Instead, at the conclusion of our visit, Ruby and I sat at a conference table with 11 people from St.Jude (melanoma specialist, dermatologist, radiologist, surgeon, pathologist, nurse, etc) and the pathologist said she didn't feel she could confirm that lung tissue (from Ruby's biopsy last year) was melanoma. Uhhhhh, ok. So what is it?

Ruby was diagnosed with cancer March 2016. It seemed definite-melanoma. I never thought to get another opinion on the diagnosis. Especially with her congenital neck tumor.  But Ruby's case really is unique as there are multiple mutations and not the red flag ones that are typical of melanoma.

They are going to do more testing on the tumor, and on Ruby's own blood. Should be 2-6 weeks til we find out more.

I'm feeling a little anxious. Its hard to wait and not know. I also see the bliss in innocence. Whatever they want to call it-its still cancer, and its still threatening Ruby's life.  There isn't anything I can do right now. Except go to bed. I can do that, and I think that will help me feel better :)  

She has a round of immunotherapy tomorrow and I'm really looking forward to talking to her oncologist, Dr Whipple. During the summer Siri and Jane would take turns going with Ruby to her infusions, but I haven't had them come since they'd have to miss school.  Ruby missed her sisters so much while we were away. She is happier, has more fun, when they're together so Siri will take a turn and come with us. Absolutely worth missing school.

I am trying to handle what I have right now, but all you friends, neighbors and family who are going through your own challenges, please know I'm thinking of you and love you!

infusion day on Halloween

sisters! Love that we got to be with Jenn

Happy birthday mama!

Ruby and I got to get fancy pedicures from Sego Lily day spa.

Loved it!!

Proud to be this girls mom! 

She's talented and I loved hearing her practice pay off.

Thank you Uncle Bill for being willing to take us to the airport at 4:30am!

Unexpected port accesses are the worst. 

And Ruby is getting older, she remembers what's coming. 

The mental part of port access is getting harder. 

Love love loved the Memphis Zoo! Hardly anyone there. Perfect cool fall weather. Pandas. And got to be with another melanoma St.Jude family that had 2 little girls that Ruby became friends with.

welcome home gift from Jane to Ruby :)