2 Years Ago

Wow… it’s amazing to think that 2 years ago today Mike and I did one of the hardest things ever. One that created the image of a 2 year old girl screaming for me as they took her through the double doors into surgery. Her not know what awaited her… and her father and I not knowing the extent of what waited her.

Today 2 years ago, Jesse was taken into surgery at CHKD for her biopsy and Central Venous Line Placement (CVL). She didn’t come out of surgery until close to 5pm… then had to go back because her lung started to collapse. Strangely by the time the doctor got back in there to place a chest line, it was re-inflating. It was after 7pm when Jesse was finally taken up to 8B room 802 for the first time. We would be in the hospital for another 2 weeks…

During the first week we had MRIs, MIBGs, CT Scans, hearing test, EKGs, ultrasounds of her heart, and more while we waited for the final results of the biospy. I remember her singing as we went down to get her EKG, but then again we’d given her morphine to keep her comfortable from the long incision on her stomach that has caused her belly button to be flat instead of concave.  Then on Saturday November 11, 2012 we meet with her oncologist to discuss her course of treatment and that she had non-MCYN amplified Stage 3 high-risk neuroblastoma.

During that first week we also waited for her intestines to wake back up from being moved around to get to the tumor…and I learned how to change the dressing and caps on her CVL ( Something that Mike, Fer-fer, Melinda, and I would do for the next 15 months).

Her sister, Christine, celebrated her 4th birthday in the conference room on 8B the Sunday before Jesse started chemotherapy.

On November 17, 2010 we started chemotherapy, Cytoxin and Topetecan. Jesse also started taking zofran and benedryl to keep the nausea at bay.

On November 4, 2011, right after midnight Jesse finished her final immunotherapy treatment and final 5 day hospitalization to receive treatment. All we had left was Accutane to finish (completed in December) and her CVL to remove (emergency surgery January 15, 2012)

This November 4,  Jesse went to church and ate breakfast at the Candle Factory (our Sunday morning ritual since Mike was a boy…). Her only worry is when she’s fed and having to go to school (she likes it but would rather stay with me… I keep telling her she has to go learn marketable skills so she can take care of her self because I won’t live forever.)

Her hair almost the same length as when she was diagnosed…

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