RallyRuby Go TeamThack!
Donation protected
About Ruby and the Thackeray family...
Our 3rd awesome daughter was born March 2013 with a large vascular mass on her neck, diagnosed as an atypical nodular melanocytic proliferation. Surgery January 2015. There was worry of melanoma in the mass after being removed, but all her scans were clear until...March 2016 Ruby was been diagnosed with metastatic melanoma. Tens of spindle cell tumors in her lungs. We thought our time together was short. We tried an immunotherapy drug April/May 2016. After seeing more growth we decided to stop treatment and enjoy our time together. Trips all that summer and fall, and excitement of expecting another baby girl kept our spirits up.
Continued scans showed stability-we didn't know why but were grateful.
January 2017 Ruby started Nivolumab again, because maybe had helped? In October, after getting infusions every other week all year, her oncologist studied past scans and noticed that yes, they were growing. We needed to try something new.
November 2017 Ali & Ruby visited St.Jude Childrens Hospital in Tennessee. They suggested and did further genetic testing. Results identified yet another mutation in the tumors. Not only is there a drug that has recently come to trial, but it is available in Utah at our local hospital- miracles again. Ruby started Entrectinib (an oral pill she takes daily at home) December 2017. February 2018 let us see that the tumors are literally melting away! February 2019 she had surgery to remove 2 tumors that were left. Pathology showed good news, no active melanoma cells so the med is still working. May 2019 Ruby got her port out! She'll continue the trial drug for a few more years with labs and dr visits every 4 weeks. We don't know what future side effects may result, but for now we are trusting in God and grateful for another day together!
#RallyRuby #TeamThack
If you'd rather send a donation another way, please mail to:
TKJ Charities INC.
2413 Royal Lane
Sandy, UT 84093
**This charitable account will match 20% of all donations to the Thackeray family.
The Thack's blog:
Thacksmack.blogspot.com
ABOUT THEM
We are Mark & Ali and have three beautiful daughters. At the 20 week ultrasound of the youngest, Ruby, we were told there was something growing on the back of her neck. It continued to grow, and through many tests, scans, and monitoring, Ruby was born at 36 weeks via c section March 2013 with an unknown vascular mass. Her heart was thankfully strong enough, since this mass was like pumping blood for an extra organ. It was about the same size as her head, and looked like an open wound. It was hard to see, but as she cried out loud, we knew that was good sign. She was in the NICU for the first month of her life. Scans, biopsies, testing, they weren't sure what it was, but diagnosed it as an atypical nodular melanocytic proliferation...a big bumpy mass from the family of a mole, or melanin.
We were told it would grow slowly, but it actually got smaller! Then in October 2014, we noticed it was getting bigger, and kept getting bigger rapidly. After a few hurdles, she had surgery December 2014 to embolize some of the larger pathways of blood flow. Her major surgery to remove the mass January 2015. It went better than planned and her ENT and Neurosurgeon felt they were able to remove it all. She was in a neck brace for about a month, and recovered so quickly. This girl is amazing!
Testing on the removed mass showed that it had a genetic mutation, and looked a lot like melanoma. Through more scans and more doctor visits than we can count, it was decided that it was not melanoma. She had clear scans at her checkup July 2015. Sickness and family conflicts bumped herJanuary scans to March 15, 2016. There was an abnormal white circle found in her MRI, so we waited a few hours so she could get a CT scan. As her doctorwalked into the room with a social worker, I knew it couldn't be good news.
Those little white dots, aka pulmonary nodules, are all over in her lungs. She had a thoracic lung biopsy March 17 and we are currently in the waiting mode. It looks a lot like cancer, but it may not be. For now, we are staying positive and praying for her. We pray to have the strength to take on whatever may be in the future!
Through all of this, Ruby and her sisters have kept doing what they do...riding bikes, playing Legos, singing, having fun together. We love being their parents and feel blessed to be a family.
Our 3rd awesome daughter was born March 2013 with a large vascular mass on her neck, diagnosed as an atypical nodular melanocytic proliferation. Surgery January 2015. There was worry of melanoma in the mass after being removed, but all her scans were clear until...March 2016 Ruby was been diagnosed with metastatic melanoma. Tens of spindle cell tumors in her lungs. We thought our time together was short. We tried an immunotherapy drug April/May 2016. After seeing more growth we decided to stop treatment and enjoy our time together. Trips all that summer and fall, and excitement of expecting another baby girl kept our spirits up.
Continued scans showed stability-we didn't know why but were grateful.
January 2017 Ruby started Nivolumab again, because maybe had helped? In October, after getting infusions every other week all year, her oncologist studied past scans and noticed that yes, they were growing. We needed to try something new.
November 2017 Ali & Ruby visited St.Jude Childrens Hospital in Tennessee. They suggested and did further genetic testing. Results identified yet another mutation in the tumors. Not only is there a drug that has recently come to trial, but it is available in Utah at our local hospital- miracles again. Ruby started Entrectinib (an oral pill she takes daily at home) December 2017. February 2018 let us see that the tumors are literally melting away! February 2019 she had surgery to remove 2 tumors that were left. Pathology showed good news, no active melanoma cells so the med is still working. May 2019 Ruby got her port out! She'll continue the trial drug for a few more years with labs and dr visits every 4 weeks. We don't know what future side effects may result, but for now we are trusting in God and grateful for another day together!
#RallyRuby #TeamThack
If you'd rather send a donation another way, please mail to:
TKJ Charities INC.
2413 Royal Lane
Sandy, UT 84093
**This charitable account will match 20% of all donations to the Thackeray family.
The Thack's blog:
Thacksmack.blogspot.com
ABOUT THEM
We are Mark & Ali and have three beautiful daughters. At the 20 week ultrasound of the youngest, Ruby, we were told there was something growing on the back of her neck. It continued to grow, and through many tests, scans, and monitoring, Ruby was born at 36 weeks via c section March 2013 with an unknown vascular mass. Her heart was thankfully strong enough, since this mass was like pumping blood for an extra organ. It was about the same size as her head, and looked like an open wound. It was hard to see, but as she cried out loud, we knew that was good sign. She was in the NICU for the first month of her life. Scans, biopsies, testing, they weren't sure what it was, but diagnosed it as an atypical nodular melanocytic proliferation...a big bumpy mass from the family of a mole, or melanin.
We were told it would grow slowly, but it actually got smaller! Then in October 2014, we noticed it was getting bigger, and kept getting bigger rapidly. After a few hurdles, she had surgery December 2014 to embolize some of the larger pathways of blood flow. Her major surgery to remove the mass January 2015. It went better than planned and her ENT and Neurosurgeon felt they were able to remove it all. She was in a neck brace for about a month, and recovered so quickly. This girl is amazing!
Testing on the removed mass showed that it had a genetic mutation, and looked a lot like melanoma. Through more scans and more doctor visits than we can count, it was decided that it was not melanoma. She had clear scans at her checkup July 2015. Sickness and family conflicts bumped herJanuary scans to March 15, 2016. There was an abnormal white circle found in her MRI, so we waited a few hours so she could get a CT scan. As her doctorwalked into the room with a social worker, I knew it couldn't be good news.
Those little white dots, aka pulmonary nodules, are all over in her lungs. She had a thoracic lung biopsy March 17 and we are currently in the waiting mode. It looks a lot like cancer, but it may not be. For now, we are staying positive and praying for her. We pray to have the strength to take on whatever may be in the future!
Through all of this, Ruby and her sisters have kept doing what they do...riding bikes, playing Legos, singing, having fun together. We love being their parents and feel blessed to be a family.
Organizer and beneficiary
Liz Van Dorn Dean
Organizer
Alison Thackeray
Beneficiary