Today we found out the results of Jesse’s scans…. and since there is no change, we don’t go back until July. 6 whole months…
And when she does go for scans next time, it will only be a CT Scan. A CT scan on the new machine that will take 5 minutes… with contrast that fewer kids are complaining upsets their stomachs. Then we’ll have the results by the afternoon when we meet with her oncologist. A one day trip versus 3 days in a row!
Jesse might have to do the MIBG scan once a year just to make sure we don’t have new growth in different areas. This is safer for Jesse because the MIBG isotope can damage her thyroid. In fact when she gets the isotope she has to take 4 days of SSKI drops to help protect her thyroid. It is a horrid tasting drug… and the only one I have ever had her spit back at me. I give it to her mixed in tea to help mask the taste, and yes I do tell her. She and her sister are too smart for me to get away with that trick 🙂
We will see the audiologist a few more times over the next five years, but then we won’t see them any more. Jesse was very blessed to come along at the right time for the sodium thysulfate experiment (Sodium thysulfate has been found to protect the hearing that cisplatin can cause children to loose when given the chemo. Both drugs made her super nausea, but she was a trooper.)
She will have EKGs and Echos once a year during the next four years. Then we’ll go to every five years. The EKGs and Echos are to monitor the heart for any delay effects from having doxarubin chemotherapy.
While all of this is exciting, it is a little scary. Why? Because you hear of the cases where the cancer recurs or a new cancer develops. Our oncologist reassured us this was very rare. I am sure that he gets tired of telling everyone that instances of recurrence are rare, but as a parent you never know if your child will be that rare instance.
(Side story that I forgot to add to yesterday’s post because I was tired and stressed out:
The sedation nurse told me that Jesse sat up in the middle of the CT Scan looked around and laid down yesterday. They had cut her sedation drug precedex off a half hour before the CT Scan.
Another side story:
I told Jesse we were going to get her hearing checked on Wednesday. “Mommy, I don’t need my hearing checked. I hear just fine.”
“You do? Then why don’t you do as I ask?”)
Mike and I are extremely grateful for the prayers and well wishes during these last two years. We continue to pray that she will be ok and live without severe side effects of the cancer and its treatment.
We do plan to continue raising money for pediatric cancer research.Because everyday 46 children are diagnosed. And many more continue to live with the side effects after treatment is complete.
On April 6, 2013, we will be holding the Queens Lake 5k. Since Colonial Road Runners are helping us with the race again this year, a portion of the proceeds will be donated to their scholarship fund.
For more information please visit www.queenslake5k.com