Healing Danica Jane

For: Danica Taylor
Seattle, WA
Organizer: Amber Gunn
Healing Danica Jane (Danica Taylor)
$35,220
of $25,000 goal
100% Complete
Raised by 255 donors

The Story

Danica Jane (22 months) was diagnosed with a rare brain cancer called Atypical Teraroid Rhabdoid Tumor (ATRT), Grade IV. It is a very aggressive, very deadly cancer. Only about 150 to 200 people are diagnosed with this kind of cancer annually. The tumor was discovered unexpectedly on November 24, 2017, after Danica had been inconsolably crying for several weeks off and on, pointing to her head and ear and saying "owie." She had displayed no neurological symptoms, so the MRI was just precautionary, but as it turned out, it was the right call--thanks to her mama's persistence and a very kind pediatrician who believed her. The tumor was surgically removed the following Tuesday at Seattle Children's Hospital; however, removing the remaining microscopic cancer cells surgically would be like scraping sand out of angel hair. 

Danica has started a very aggressive chemo regimen that will require a "stem cell rescue." The treatment began with a spinal tap, a central line IV in her heart, and a stem cell harvest. The chemo will last six to nine months and will likely end with proton radiation. We were told survival rate with children that have this cancer is about 50%.

Danica is under the care of some of the best doctors in the world. She has a team of roughly 50 neurologists, oncologists and pathologists actively monitoring, treating and consulting on her case. As far as hospitals go, Seattle Children’s is the Disneyland of hospitals. In addition to some of the best doctors in the world, there are play areas, family areas, Starbucks, massages for parents, people who come to play and entertain the kids, people who leave gifts for kids, and just generally an amazing staff who love and care about their patients. 

Funds raised on this site will go to help cover the Danica's medical costs not covered by insurance, and the Taylor family's travel and living expenses, as they will need to remain in the Seattle area for several months away from their home in Skagway, Alaska.

Please share far and wide. Think of Danica, her mama Audrey, her daddy Matt, and her big brother Gus, who desperately misses his little sissy. We covet your prayers and support. You can contact me (Amber) with any logistical questions.

Fundraiser Updates

Posted on December 7, 2017

Posted on December 7, 2017

With some ups and downs, Danica is doing GREAT. Dr Ellenbogen said it had been a long time since he had seen anyone come out of surgery like she did, and she looked great. The bogginess in her head is going down. She was hurting yesterday, but it seems to plateau for two or three days and then get better. They discharged us on Monday night so we could get a little rest and grounding before her treatment. We tried to fill it with fun things, including a swanky hotel stay (a gift from my brother and his wife!), and a short visit with cousins and family in Eastern WA where we did a mini version of Christmas Eve. She got to snuggle her baby cousins and make gingerbread houses!

Tonight we will be moving into Ronald McDonald house. We will switch off taking turns between kids and locations. For what it is, Ronald McDonald house is pretty amazing. It costs about $900 a month and they have a large hotel facility for as long as we need. There are nice play areas Gus and eventually Danica will enjoy. But the bedroom itself is a spartan, old, double queen one bedroom and a bathroom. Fluorescent lighting. I thought it was hard in our regular house not having a playroom... at least we had couches. I am also worried about the painful reality of being surrounded by children and families affected by tragedies. What if we make friends with moms and dads whose children die during treatment? Or what if theirs make it, and ours does not? Yeah, it’s all pervasive right now. I’m coping through prayer, trying to meet my kids’ needs, the occasional Starbucks drink (thanks everyone), and trying not to think about things too deeply.


Posted on December 1, 2017

Posted on December 1, 2017

So many ups and downs. Today, Danica is cranky for probably a thousand good reasons. The obvious—this sucks. She’s got two IVs, three leads, a pulsox toe monitor, and worst of all, a tube flowing directly out of her brain. It’s strictly a gravity situation, but it’s there to draw away excess spinal fluid or any blood. Without this, she would get hydrocephalus, which would cause damage. 

It seems to be leaking just a little bit. The doctors may have to add an additional stitch to tighten up that hole—but that’s a lot better than yesterday’s fear that she’d have to have surgery to protect a swelling ventricle. The drain is doing to job; but again, it started leaking a little bit out of her scalp today. It freaks me out. 

She’s also in quite a bit of pain today. They’re giving her Tylenol, oxycodon, and the occasional dose of morphine. She should still bounce back quickly, but for now, it’s hard. 

She’s also on steroids, which can make a kid irritable, and they definitely have. 

She has had like 16 oatmeals from Starbucks. Not even joking. We’ve already spent $200+ at Starbucks. So grateful to those of you who have sent Starbucks cards!  Thank you! Now to figure out how to order oatmeal by the truckload. 

Today the oncologists will come by to discuss...I don’t know what exactly, but presumably her post op treatment. Again, all the visible tumor was removed. But it behaved like an aggressive tumor. We still don’t know what the pathology report says, but it’s likely going to call for chemo. Praying for a miracle. She’s just so tiny.


Posted on November 30, 2017

UpdateImage

Posted on November 30, 2017

The doctors did an incredible job, and Danica knocked it out of the park. She is a spitfire, doing incredibly well—fussy, but not like she’s had brain surgery or anything. 🤷🏼‍♀️ 

The doctors got as much of the tumor as they could see and were as aggressive as they could safely be.
But I was actually pretty discouraged after talking to the surgeon. Worried about what kind of tumor it is.  We won’t know for about a week. But it LOOKS like an aggressive glioma, based on the way it invaded the white brain matter fibers in her brain—and yes, it was quite a large tumor growing in a toddler’s head. But, we simply won’t know the truth of the matter until next week after the pathologist looks at it. 

They have an incredibly thorough testing regimen. They slice, dice, freeze, burn, smoke it, dance with it under a harvest moon—I don’t know—but it’s a serious process. That will tell us if we will need chemo or proton beam therapy. Frankly, that is likely. But our daughter’s strength is an encouragement and comfort to us. When we met her in her ICU room, she had sat up all on her own, and she was crying for me. When I got her, she demanded water, ripped it out of dada's hands and gave it to me. Then she ate three cups of Starbucks oatmeal and two kids snack bars!!! 

She had another MRI today (Wednesday) and had to fast again today, so that’s the fifth day in a row she’s only gotten to eat one meal a day. But tomorrow, she’ll get to eat whatever she wants! And tonight the docs should give us the results of the MRI, the big question is, did we really get it all?

We are in good hands, and the surgeons have given an incredible start. And Danica is a little super hero. I always knew she was an incredibly tough little cookie, a spitfire. I now understand what people mean when they deserve a child as “a fighter.” I didn’t think many others had the opportunity to see that about her...but I don’t think anyone will ever question that again. The proof is in the pictures!

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