I get a lot of requests to hear more about Ruby’s life story so I thought I’d create a page for it. Bear with me, this may get emotional :) Also, a caution: there are some graphic images. 

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March 1st, 2013. Operating Room, University of Utah Hospital

We didn’t know what to expect. We were hoping to hear her cry when she was born, but were bracing ourselves in case she didn’t.

Four months earlier, when we did the routine 20-week ultrasound for the baby, we received news that has changed our lives forever: our third baby, another girl, had a large vascular soft-tissue mass growing at the base of her skull.

After a barrage of questions, we understood that first, no one was sure what it was yet, second, it was extremely vascular and could potentially lead to heart failure by drawing away so much blood from her system; and third, that the mass could lead to any number of health complications for our baby.

My wife, Ali, and I found ourselves surrounded by two medical delivery teams who are ready to address any possible issue that could arise at birth. Trying to remain calm, we wait as our obstetrician performs both a vertical and horizontal incision to allow for more space to deliver the baby without disturbing the mass which was roughly 2/3 the size as her head. And after cutting the umbilical cord, we heard the sound we’d been waiting for, hoping for, and praying for: a baby’s cry.  I look down at Ali and see tears streaming down her face. A sign of new life. 

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Ruby Elizabeth Thackeray had finally come. Despite the, semi-exposed mass that encumbered the back of her neck, she was healthy. Concerns about the mass and heart failure persisted as they kept her in the newborn intensive care unit (NICU) at Primary Children’s Hospital for four weeks. Removal was not an option at this point. After a small biopsy of the mass, little Ruby lost nearly 20% of her blood. Yet as she progressed, the hope that we she would still grow normally without further complications started to grow.

November 6th, 2014

Months pass and Ruby was growing like a weed. As the weeks went by, healthy skin formed over the mass and it got smaller, followed eventually by her darling soft curly hair.

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But in early November 2014 it begins to grow again. And very quickly. After talking with her physician at Primary Children’s Hospital, we decide that it’s time to operate and try to remove the mass. After two different surgeries, and a series of miracles, the mass is removed on Friday, January 9th, 2015. Sections of the mass are sent off for testing and Ruby resiliently recovers after being in a neck brace for just a month.  There is concern that parts of the removed tumor look like melanoma, what is considered the most advanced stage of skin cancer from the sun. After every scan possible, her body checks out clear and any worries are doused.

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March 15th, 2016

Roughly 14 months after the mass had been removed, we went to a preventative scan and Ruby’s MRI and Xray appeared clean, except for one small white spot on the top of Ruby’s chest that the oncologist wanted to check. Not thinking too much about it, especially since Ruby’s just got over a cold, ear infection, and pink eye, we stayed and did a CT scan of her chest.

Ali: “When Dr Holly walked into room 8 with a woman I didn’t recognize, I knew something was up. The doctor said there were multiple spots (tumors), all over her lungs.”

After a painful lung biopsy the pathology report sank hard and fast into our lives: metastatic melanoma. Stage IV cancer.

Because of the advanced stage of the cancer, chemotherapy and radiation are ruled out. Immunotherapy, a newer and experimental treatment in adults and especially pediatrics, is one of the few options that remained. Miraculously, the drug we needed for her was approved through insurance so we could stay in Utah and not have to travel. During this time Ruby was referred to the Make A Wish Foundation. She wished for a bike from Princess Elsa.

After three months of immunotherapy, Ruby’s scans show that the tumors were getting bigger. We quit treatment. The next day we heard the heartbeat of our 4th baby on the way (another girl, of course).  We decided that being together as a family is priceless and most important.  The oncologist suggested moving up her Make A Wish trip to Disneyworld since we weren’t sure how quickly the disease would progress.  We were able to spend a week in Florida together, meeting Elsa, Baymax, swimming, eating too much ice cream and jumping on the beds.

July 2016

We head to Florida for our Make A Wish Trip and it was incredible. The girls loved every single minute of it, despite the heat, humidity, and the total downpour that can come out of nowhere. Ruby was in heaven in the swimming pool. We could have stayed at the hotel (The Polynesian) the whole time and she wouldn’t have minded at all.

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January 2017

Ruby has been feeling good and there haven’t been any signs of any physical difficulties, such as breathing, coughing, etc. We schedule a CT to see what has been going on and discover that there the tumors in her lungs appear relatively the same, without much growth. Amazing news. Our oncologist wonders if perhaps her immunotherapy did work after all. After discussing options, we decide to put her back on the treatment and see if that will produce any positive results.

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March 28th, 2017

Another CT scan reveals that there is no new growth!  Although we are bit confused about all of this, since the tumors seemed to be growing so rapidly last year, we are undoubtedly estatic. We did have the slightest hope that the tumors would shrink but we’ll take this result all day :) Ruby is still feeling great and hasn’t experienced any direct side effects. After talking with our oncologist about our next two hospital visits, Ruby asks, ” Then can I be done with the hospital?”
Ali: “No, sorry, we have to keep coming.”
Ruby: “In heaven I won’t have cancer?”
Ali: “No, sweetie, your body won’t have any cancer in heaven.”

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June 20th, 2017

(from Ali’s journal) MRI day today, over at Riverton Primarys. Ruby was kinda grumpy off the bat since she hadn’t eaten since about 9:30pm last night.  They accessed her port, but its not the same as being in her usual space at the salt lake location in the oncology clinic. The needle was too long so it stuck out of her port a good 1/4″. Better than having to get an IV though. Ruby was tired of waiting but once we went back to do the MRI she stopped in the doorway. Foreign room, foreign machine, nurses she didn’t recognize, etc. I held her and they started the sedation.
Then it got sad.
She fought it hard.
Scream-crying, shaking legs. I didn’t like it. I held it together.
After she was out and they took her back, I called Mark and had a little cry. I felt better after sharing my feelings. All the medical stuff is getting harder as she gets older. Understand more, gets scared more, has more of an opinion. I got some veggies and dip then read a book for a bit. They finally called me back about 12:45ish I think. She took a while to wake up. It gave the nurse time to deaccess her port. We were going to leave it in for tomorrows business but I didn’t want her to have to sleep with it and have that needle sticking out so far. She stayed asleep while we took all the adhesive off which is the part Ruby really struggles with.

Two days later, we received word that the tumors have stayed about the same size. Another miracle!

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September 19th, 2017

We did another CT scan today and received some sobering news: her tumors have grown. After a while of “no new growth” it is easy to feel hopeful that they will never grow. Our oncologist is contacting other specialists to get their opinion on how we should proceed. Do we switch to a different treatment? Continue on nivolumab? Trying to enjoy each day and soak it all in.

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November 13th, 2017

Our oncologist recommended we get an updated genetic test since our last one was a bit outdated and this new one is substantially more comprehensive (Foundation One). We got the results back and they identified that one of the mutations in the tumors is NTRK3, which we did not know previously. And as it turns out, miraculously enough, there are two trial drugs that specifically target this genetic mutation. 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. Waiting to see if it’s possible to get the one treatment here so we wouldn’t need to travel. 

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December 12th, 2017

Our oncologist was able to get Entrectinib approved for administration here at Primarys!  Ruby starts her new treatment. It is orally administered so we break open two different capsules and mix them into some yogurt (she chose coconut) and three bites later, it’s done. Since this is a clinical trial, there are a variety of study protocols that need to be followed. As today was the first day, she had blood draws at hour 1, 2, 4, and 6 after taking the drug, and ECG, and a healthy stack of paperwork. Walking around the hospital in between blood draws, Ruby decides to hand out a few of her toys to some other kids there with help from Ali. So far so, good. No direct signs of side effects.

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