Abigail - Neuroblastoma

[Annabeth]

Here's an excerpt from what we originally shared with friends:

Abigail had not been feeling well for a couple of weeks (fever, RSV-sounding cough, lethargy). On Saturday, January 15, Annabeth noticed a lump on Abigail's lower neck near her shoulder. They took her to the urgent care and were told to take her to a children's hospital for blood work to determine what it might be. After drawing blood (which Abigail HATED), x-rays of chest and abdomen, another IV, and a CT scan, the doctors believed it to be a pediatric cancer called Neuroblastoma. The tumor starts on her left kidney/adrenal gland and works its way up through her torso, behind her heart, and surrounds her aorta artery.

A surgery was set for Monday, January 17 for the doctors to get a biopsy of the tumor as well as a biopsy of Abigail's bone marrow.

Saturday night they put Abigail in PICU (pediatric ICU) and decided to drain the fluid around her lung that night instead of waiting for Monday. The surgeon inserted a tube (big, long thing) in between her ribs and lung muscle. The lung was collapsed, and the area was full of fluid. They drained an insane amount of fluid.

Sunday she remained in that state with an IV, blood pressure cuff, oxygen monitor on her toe, tube going into her chest, and pediatric cables taped to 3 places in her back. She received morphine every 2 hours because adult patients report that chest tubes are extremely painful to have in.

Sunday night was not a good night for Abigail. Her breathing became extremely labored, and she did not look good.

On Monday the doctors were able to move her surgery time up 1.5 hours to try to help her. The surgery went well, and the Goss family was so very grateful!

She was in PICU for 3 weeks, most of that time fully sedated and intubated to allow her lungs time to heal. The tumor had complicated her organs and was preventing lymph from draining normally; she had extreme edema. She received one round of chemotherapy while sedated.

We finally got discharged, only to return the next day because she was vomiting uncontrollably--diagnosed with rotavirus ---the common childhood 'stomach bug'!!!

Finally got over all that; we started her on Protocel. Decided she needed one more round of chemo to keep the tumor in control and to give Protocel time to work. I hate chemotherapy, but we felt inspired and at peace with the decision. She made it through remarkably well.

Her oncologist says she has had a 92% decrease in tumor size!!! And that was only from round 1 of chemo. So we feel she has a really good path to start Protocel on.

Neuroblastoma is a childhood cancer that is very rare, and usually the child is born with it and it takes some time to detect.


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Editing Reason: Changed name of subject line just slightly.