Scanxiety

Every three months for the next couple of year Cydney will receive MRI scans to monitor any growth or changes in the brain. Today was her first one since Chemotherapy treatments have begun. There is a lot of anxiety about what you will find out along with hopes and prayers the scan is clean and NED (no evidence of disease). 

The day began like all others, with Therapy in the morning and short break home for a nap and then off to the hospital to get MRI. We arrived there at 2pm to complete registration and make our way to the Radiology unit for the 3pm appointment. Once checked in downstairs we were taken back to the exam room to wait on the anesthesiologist. To my surprise it was the same Dr. who attended Cydney's initial surgery at Phoenix Children's. After a minute of recounting Cydney's story she recalled the events that took place that day. She commented on how happy she was to see how far Cydney had come since July. 

Cydney was taken back to the MRI room at 4:15 and the waiting began. Three hours later the receptionist called me to come back to the recovery area. Cydney was agitated and scared. I could hear her crying for me as soon as I walked through the doors. For the next hour we waited for Cydney to wake up more and to record her vitals, as well as for neurosurgery to come reset her Shunt. By 8:15 we were headed home and would wait to talk with her oncologist Tuesday afternoon. 

Tuesday Cydney had therapy in the morning before heading to Banner to meet with her oncologist. Cydney was tired and chose to lay down for a nap during the meeting. The oncologist and the nurse came in the room with results in hand. She sat at the computer to bring up the images. While doing so she began to talk about there being something show up they were unsure of. It can not be clearly defined as a tumor or as something else, only that it is something that was not present in the October scan. She proceeded to discuss her plan to send the images to the specialists in Phoenix for their opinions and to send it to the tumor board that meets weekly. 

Scan from Monday showing a new spot. 

View from top of head showing spot

While results were not all clear today and could not confirm NED there is no confirmation it is more tumor at this time. It could be artifact, as it is next to the shunt. It could be radiation scarring showing up. The steps forward will be determined by what the specialists in Phoenix see. We could do another scan in a few weeks, the method of treatment could change, or it could be nothing and we continue as planned. We hope for it to be nothing! It is rare for reoccurrence to happen while in treatment, but possible.

The last two weeks have been rough on Cydney. The B Cycle hit her hard. Along with the G tube coming dislodged and replaced, resulted in an infection. Three hospital trips that week for fever and pain made for a long week. After a round of antibiotics and  rest the infection is gone and she is feeling much better. We took two weeks off of therapy to get better and get much needed rest. Her counts were low that second week of the B cycle causing her to be neutropenic, making the fevers and infection even more concerning.  

Last Saturday afternoon we attended a Beads of Courage fundraising event. Cyndey has been growing her collection of these beads as she goes through treatment. Each bead signifying a step in the journey, telling her story in a visual manner. It was a fun evening and nice to meet the founder and owner of Beads of Courage. Cydney was gifted a  beautiful bead holder as well as a few special beads.

This coming week we meet again with school therapists and teacher to lay out a plan to get Cydney back in school.

The next days and weeks we will be wondering what is seen in the scans by the doctors in Phoenix. We wait to hear their opinions and whether or not a change in treatment will be discussed.