Today was a whirlwind tour of CHKD’s radiology department. Jesse was scheduled for an MIBG test (neuroblastoma puts off a special hormone which when mixed with a nuclear isotope lights up when a special camera is used), CT Scan of her chest and abdomen ( I really hope this means we can stop taking Voriconizole… before our new insurance, it was a tad expensive. Not as bad as it could be though.), ECHO/ EKG (Etopiside and Doxarubin chemotherapy can cause heart damage.), and Audiogram (Cisplatin chemotherapy can cause hearing damage.).
Our check in time was 6:30am, meaning we needed to leave here by 5:15am, 5:30am at the absolute latest. Jesse woke up briefly to get dressed and then was back out. Mike ran to 7-11 to grab me a Vanilla Cappuccino for the drive.
We arrived with 10 minutes to spare, and began the check in process for radiology. This involves signing in, then waiting for your name to be called, filling out forms on what drugs Jesse is taking, and then waiting for them to take back to the sedation unit.
At the sedation unit, they weigh her (12.4kg!!! but she did have her boots on…) and take her vitals. They have paperwork to fill out, so Jesse and I played for about 45 minutes. At 7:45am, her nurse came in with Bob (the pulse ox) and Fred the IV Pole. They have a new Bob that is about the screen size of a Kindle Fire. We joked that at least Bob can stick to his New Year Resolution. Jesse even told them hello.
The nurse hooked Jesse up to Fred and began running the Precedex. Jesse never screamed or was upset about any of it, and within 5 minutes she laid down. I texted Mike and FerFer that she was a pro by default for falling asleep so calmly.
They handed me a blue pager and wheeled her off for the hour long MIBG test.
At 10am, the pager buzzed letting me know she was in the sedation unit where I could go see her. The first thing the nurse told me was that they had to catheter her because when they began the MIBG test her bladder was full, blocking their view of the tumor. In her sleep, she fought them. They upped her dose of precedex, and she still fought them. The nurse told me she was really worried there might be hand prints on Jesse because she had to hold her so hard. Luckily there are no hand prints.
I am not angry about the nurse having to hold Jesse. This had to be done to see the tumor. I do wish Jesse had not fought quite so hard because every time she has peed today, she is screaming bloody murder. And tonight at bedtime, we had a 15 min discussion about who took her “good pee” and was the “bad pee” ever going away.
On the other hand I am really impressed she fought them in her sleep. Tough little kid 🙂
Around 11am, she was awake enough for me to take her upstairs to audiology. When we entered the office, there were 3 pictures of cats with telephone headsets looking beyond freaked out. And above it said, “This is your front desk staff. Be nice.” But the ladies behind the counter where nice to me so not sure what happened to the in the past to leave a distinctively foul taste in their mouths.
The audiologist was awesome, as she always has been. 🙂 Our appointment was for 1pm, but they allowed us to come when we finished with sedation.
Jesse slept through all of it. They blew air into her ears to check on her tubes she had placed at 11 months. One has fallen out, and the other is going. The slits from her ear tube surgery have closed.
Then they tested a certain frequency by bouncing a noise or air (I am not really sure?) off the ear drum and measuring it with a computer. The audiologist was very pleased, and because of this, she didn’t try to wake Jesse up. We will have to make an appointment to return when she is awake for the rest of the hearing test at a future date.
We left the room, which looked like a 1950s nuclear fallout shelter, and were out of the parking garage by 11:39am.
Jesse slept the entire way home. We made it back in time to get her sister off the bus, of course she was far from pleased to see us. She had a wonderful afternoon with our neighbor planned in her mind… and well I ruined that.
The girls spent the rest of the afternoon playing with their doll house. And around 6pm, Ferfer came to change tape. About the time we started Mike called to see what we’d like for dinner.
While we were on the phone with him, our oncology nurse called.
The tumor is still there, but it is stable and no new signs of it elsewhere, not even in her bone marrow. I had expected this, but was hoping for a miracle that maybe it shrunk another 50%. Mike was a little devastated by the news. I think he had it in his heart, and had been praying really hard, for the tumor to be completely gone. Please don’t misunderstand, he is happy that the tumor is stable. But I can understand the level of fear knowing it is still there brings. All we can do know is be proactive through what she eats and pray.
It’s a hard place to be. Waiting, watching, praying something doesn’t go haywire again. Wondering what went wrong the first time. Praying that we get her CVL out to stay out (Don’t know when that will be yet). I know a lot of people use the term cancer-free. For Jesse, this is not the reality, and I have a hard time with that term anyway. How can you be sure that you are cancer-free? All it takes is 1 free radical hitting a part of your DNA, and that DNA not reconstructing itself correctly… bam.
After dinner, Jesse decided that she would get water from the fridge herself. She accidentally dumped some on herself, getting it on her tape. So Ferfer and I had to take off that tape and place new tape. I didn’t want to leave wet tape on her for fear of allowing bacteria or other nastiness to grow.
On January 10, Jesse will have a bone scan. The radiology department will put contrast through her CVL, then we wait for her bones to absorb it, sedation, and pictures taken. All of this sounds like it will take between 5 and 6 hours. I could be wrong, but from the time schedule they called with, it sounds like a long test.
January 17, we meet with her doctor to discuss the scans and what we do from here.
Tell Mike to keep on praying and believing that the nasty, old tumor is going to be gone one day. I know that he had to have felt let down when he heard that it is still the same, but both of you to remember to keep faith and believe in a better tomorrow. I am still praying for that miracle. I am so glad to hear that Jesse is still feisty 😉 Keep your head up Soosan, you are a strong woman. ♥♥
Thank you so much for your kind words. They mean a lot, and thank you for the prayers. They are the best gifts 🙂
Hey Soosan,
Thanks so much for the update on Jesse. We think about you guys all of the time, and we will continue to pray pray pray. Its amazing how much she fought during anesthesia. They may be tiny to us, but they are strong little girls when the fighting really counts. Thanks for the information on the whole audiology experience! Meggie has to have her hearing tested next month as well. She also has one tube still in like Jesse. I will be thinking of all of you when it is time for her big scan and praying that it will bring fantastic news. Hang in there mama, you and Mike are two amazing parents and you both continue to be an inspiration to those of us who are also fighting with our little fighters. Many hugs to Jesse!
Kelly Schulte
Meggie will love the rabbits! I was a little bummed that Jesse wasn’t awake to see it. And the cats (if they are still there) are on the window to the far left from the entrance door. They are definitely interesting!
We need to get the munchkins together to play. They would have a blast.
Thank GOD for the good news so far. We, of course are hoping and praying for her continued progress. Michael and Soosan we are both proud of your strength and love shown for your two young daughters, please keep up with your faith and if we can help in anyway let us know.