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May 26, 2017 Latest post:
Jul 26, 2018
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When I was 18 weeks pregnant with Emily, we got the potential diagnosis of a right pelvic kidney that would be further addressed by another ultrasound around 28 weeks. At my 28 week ultrasound it was confirmed that the right kidney was in the pelvis and would be further looked into when born. When Emily was 2 days old she had an ultrasound to address the pelvic kidney, but what also was found was a possible left adrenal hemorrhage. A week in a half later we had a repeat ultrasound and the area of concern grew. I received a call the day after that ultrasound from Emily's pediatrican asking Cameron and I to come in to go over results. That was when her doctor went over the possibility of a neuroblastoma and that she would need to be seen by an oncologist.
Our hearts were absolutely broken. How could there be anything wrong with our perfect rainbow baby? Emily had her first MRI on March 20th and the following day we met with the oncologist where she discussed the likelihood of a neuroblastoma and placed Emily in a clinical trial. We have been blessed with the most caring and dedicated doctor. Words cannot describe how wonderful she and her team are. They have become like family to us.
The following week Emily got an MIBG scan which became our "diagnosis day". An MIBG scan is a full body scan that uses radioactive dye to light up areas of concern. This is exclusively used to diagnose a neuroblastoma and check to see if it has metastasize (this is used rather than having to do a biopsy). This week also happened to be the week of my grandfather's funeral. We knew that Emily's great-grandpa would become her guardian angel. The neuroblastoma was staged as the lowest stage since they did not find any metastisis nor did she have any symptoms. At this point we were told we would "carefully watch" the tumor with ultrasounds making sure it did not get above 50% in size from the size on diagnosis day.
In the meantime, lab work and urine samples were collected. Emily's lab work stayed normal throughout. The urine was testing for HVA and VMA which is elevated when there is a presence of a neuroblastoma. Those were sent to Mayo clinic so the could be ran properly. The urine results kept increasing, but stayed stable.
May 10th was her next scan. Emily got an ultrasound done which showed the tumor rapidly increasing in size. Initially they had been measuring by one dimension, but after talking to the doctors they wanted to look at the overall volume of the tumor and compare. I received a phone call from Emily's oncologist on May 20th that we would skip her next ultrasound and get an MRI done as soon as possible.
On May 25th we went downtown and had Emily intubated for an MRI so they could get the best picture possible. Emily took a lot longer to recover from the anesthesia and we ended up missing our appointment to go over results. Of course our oncologist is amazing and she stayed and found us and went over results. The tumor had increase in size greater than 50% and it was decided that Emily would need surgery. Our oncologist consulted the best surgeon and it was decided that she would be admitted that same evening and having the tumor surgically removed the following day. Even after being put under anesthesia and being hoarse from being intubated our happy baby assured us with her coos and smiles. She amazes us every day!!
Well today is surgery day. I have many people who care so much about Emily inquiring about how she is doing. This will be the best way to keep everyone posted on how our amazing baby is doing. Everyone's love and support is appreciated so much! We will get through this because our baby is so strong and a fighter!!