On 9/30/17 at 11:15 p.m Emma left us and gained her wings. She was surrounded by her loved ones and her mom saw her leave one life and enter into a pain free life with the angels. We will always remember the happy outdoor loving free spirited girl who always had a heart for animals especially kitties. We love you and we miss you Emma JoEllen Orr. Rest in peace my sweet niece.(Sept 2017)
This breaks my heart as a mother to have to post this but everyone deserves to know.
Emmas results from her cat scan and mibg scan are:
Emma is facing her 2nd relapse with Neuroblastoma. There is a fairly large tumor behind her tummy, and a bunch of other cancer cell locations throughout her body (skull, jaw, lung, arms, shoulders, hips, legs and possibly liver). Emma has a blockage forming in her kidney which has urine leaking into it. There is no treatment that will cure Emma since she now has kidney failure. We will make every day we have with Emma a memory while we still have the chance. Emma has fought a long hard battle for 2 years and she has touched many lives. Please do not inform Emmas classmates of the full details as we have not told Emma all the details regarding her relapse. Thank you.
It's time I inform everyone the full story behind Emmas relapse.
(Please do not inform students who go to Emmas school).
December 12th 2016 Emma relapsed with Neuroblastoma on the brain and spine. Her chance at a cure was 0%. Radiation was given in hopes to give us more time with Emma, it was never meant to cure Emma. However Emmas latest set of scans showed some improvement. Emmas bone marrow is still clean, her spine tumors decreased in size, but her brain tumor has some bleeding. Which isn't life threatening at the moment because the tumor did decrease in size so radiation did surprise us with what it did. Emma now has a very small chance(maybe 5%) of beating this and becoming a miracle child. We dont know where this will take us and we honestly have no idea how much time Emma has left. :(
Emma is a sweet 9 year old girl who loves being outside, enjoys school and using her imagination. Emma was diagnosed with Neuroblastoma in September 2015 and underwent surgery to remove the tumors, chemo, radiation and several tests and scans. In June 2016 Emma was claimed to be in remission. Emma has now (December 2016) relapsed with Neuroblastoma. She has four spots and will go through radiation. Sadly with this form of cancer chemo will not be effective against the cells like it was last year......... The following is more information from the past year.....Emma has been diagnosed with Neuroblastoma which is a very rare form of cancer (According to Emma's doctor 1 out of every 200,000 children under the age of 5 are diagnosed, it is extremely rare for a child Emma’s age to be diagnosed). The tumor is on her liver and is pushing against her spleen. The tumor is too large to operate and will require at least 18 months of chemo treatments. Emma is still undergoing tests, bone marrow samples and biopsies to gather more information and to determine how advanced the cancer is.
What is Neuroblastoma?
Neuroblastoma is a cancer that develops from nerve cells within the central nervous system. Tumors can be found in the abdomen/belly and usually involve the adrenal gland, which sits on top of the kidney. Neuroblastoma can also be found in the head, chest, neck, pelvis, bone and bone marrow. Symptoms are subtle and difficult to put together, resulting in the diagnosis of Neuroblastoma at advanced stages of the disease.
How the family will use the funds raised:
We hope to raise at least $25,000 to assist the family with the upcoming expenses. If we need to raise more funds we will do our best to help them throughout Emma’s treatments! Emma's family will use the funds raised to help with the medical costs from the numerous hospital visits and treatments. There will be several renovations being done at home (removal of carpet in her bedroom etc.) to meet the standards needed for Emma to be released from the hospital once chemo has started. It is very important to ensure Emma’s environment at home is clean and sterile to keep infection and sickness at bay. Emma’s family will also use the funds raised to assist with the cost of gas for the frequent trips to Helen Devos Children's Hospital.
If you do not feel comfortable contributing through gofundme you can also donate through Emma's Aunt Danielle's paypal account www.paypal.me/dtwin1
or to discuss other options for donating please email Danielle using the email icon above.
Thank you for your continued thoughts and prayers.