Piper’s Story

Site created on December 24, 2019

     During Emily's 26 week ultrasound the Dr's discovered a mass around our babies tailbone.  Week 28 Emily and our unborn child had an MRI that confirmed the Dr's diagnosis that our precious baby had a Sacrococcygeal Teratoma (SCT) - Type IV.  Emily had weekly ultrasounds to monitor our baby and the SCT until our sweet Piper joined the world on September 22, 2018.  At 2 days old Piper had another MRI to check on her SCT and help the surgeon and his team finalize their plan. 
     When Piper was 4 days old she underwent surgery to remove the SCT, her tailbone and additional margins. This was a complicated surgery since the tumor was extremely close to Pipers spinal cord and could possibly leave her with lifelong issues - paralyzed, bladder or bowl issues. We were ecstatic to hear and see her moving her little legs and arms post surgery. Unfortunately the biopsy results showed that everything the surgeon removed tested positive for tumor cells. Since then her care team - surgical team, primary care physician and oncologist team - have been tracking her progress and monitoring her closely with physical exams, MRI's and blood work. They have been tracking her Alpha-fetoprotein (AFP) tumor marker via blood work. Our goal/hope was that her AFP would reach adult levels (below 10) around her 1st Birthday. Her MRI at 12 month didn't show any tumor or growth. Her AFP levels were slowly rising causing monthly blood tests. Her November blood test showed a significant increase triggering another test 3 weeks later. Her AFP jumped 25+ points is just 3 weeks, this level indicated that her SCT has returned. Piper had a CT, MRI and more blood work on December 20th. The MRI confirmed that her SCT has returned, her AFP increased another 15 points in just 4 days. The MRI shows a small tumor (.7cm x .5cm x .7cm) growing in her pelvic/tailbone region. 
     We are extremely heartbroken over the news. No child deserves to be sick or have to go through anything like this. We have watched our precious Piper grow into an amazing, vibrant, energetic, smart, happy, curious and loving little girl.  We wish we could take her place but know it's not possible. This has been such an emotional time for us.  We are asking that everyone pray for Piper and pray that the treatments cure her and hopefully she comes out of all this being the same little girl she is now. 

Newest Update

Journal entry by Emily Deblack

I can't believe we started this crazy journey one year ago - Jan 10, 2020. A year ago we were told of all the things that could happen during the next 3 months and it was stressed that it wasn't a matter of if  - we will have late night visits to the ER, being admitted between chemo session for a blood transfusion, nausea, fevers - but when they would happen. We were scared and ready for all of this but so very thankfully Piper didn't have any of this and we were lucky that she did so well. 

This time last year the hospital and grandma/grandpas became our second home for 3 months. The medical staff at the hospital became part of our extended family. I can't believe it's been a year; in many ways it seems longer and in may ways it seems like it was just yesterday that we started this journey. I am so very grateful for the care and attention Piper (and us) received at the University of Minnesota Masonic Children's Hospital.  I wish we could stop in to see the loving staff that helped us so much over those 3 months and I wish we could bring them a little cheer but because of COVID we can't. 😞

We count our blessings every day that she is healthy and being a normal 2 year old. Piper is growing into an amazing little girl. She is the light of our lives and I just hope and pray the hospital never again becomes a second home. 

In May we will get blood work to see how much of her vaccines are still in her system; this will tell us if we have to start all over or if we can continue where we left off.  We will continue to do our labs here in town and Piper will start having check-up with her physician every other month.  I won't be posting much between now and May unless something changes.

Richard, Piper and I just want to say THANK YOU for all the well wishes and prayers we have received over the last 12 months.

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