Today 9/6 we were back at LPCH for the radioactive isotope injection in preparation for the MIBG scan tomorrow. Reba has had this injection many times but today had a reaction that was really scary. She couldn’t breathe, and was coughing, got rashes on her arms and chest and her nose turned blue/purple. To make matters worse, in the nuclear medicine department (where we were) there weren’t any pediatric oxygen hook ups or blood pressure. It was like everyone was super unprepared and like ten people in room not helping. After the coughing she was really pale, lethargic and non responsive. As parents we felt so hopeless.
Things got better slowly. They wheeled us over to the emergency room where we stayed for the afternoon. She received Benydryll and steroids. They are telling us she had anaphylaxis and now we have an epi-pen to keep on us at all times. We have so many questions about the future, especially with future MIBGs.
Please pray for no surprises tomorrow. We have a long day tomorrow with MIBG scan and MRI under anesthesia.
Back today 7/6/17 for results from yesterday’s scan. Good news is the mass is measuring about the same. Slightly different from last time but probably because of variability in measuring. This means we can wait until September 8 for her next MRI. At that time she will also have an MIBG. So for now we moniter closely and pray it stays the same or decreases. We will continue to have monthly labs.
Here’s to enjoying a wonderful summer without treatment!!!!!
We are overjoyed to share that today we received great news! The PET scan showed very little uptake- our oncs are saying that the PET scan is discordant with the MIBG scan. The mass is lighting up very slightly, at an SUV max of 2.3. This is not very much at all!
So what that means for us is we get to wait, live normally and enjoy life!!
Reba will have monthly lab work and another MRI in 8 weeks.
Today 3/6/17 we were back at LPCH for the results from last week’s scans.
Basically everything seems to be the same. The MIBG is still lighting up and the MRI is still measuring the tumor about the same: 4.1 x 5.1 x 6.4 cm whereas the last MRI measured 3.5 x 5.1 x 6.6 cm. The impression is that it is the same with slight variance due to the difficulty of measuring the mass (different people measuring).
The next step will be a PET scan. This is a different kind of scan that will show us where there are regions of inflammation. We are hoping of course for it to be negative where her tumor is. In some cases the MIBG will still light up even when the neuroblastoma has matured or differentiated. So the PET scan will give us more information.
We are hoping hoping hoping the PET scan is negative because then we will be able to go under observation for a bit, meaning no treatmeant . If it’s positive they may talk to us about more treatment, but not for certain.
In other news Zoe fractured her clavicle… Never a dull moment.
Wow what a day. Glad to be driving home from LPCH now at 7 pm. Today 3/2/17 Reba had an MIBG and MRI. They were running about an hour behind getting started, which is really hard for a two year old who isn’t allowed to eat. The scans got started around 2. Glad to have it behind us and anticipating Monday for the results and plan.