Today Reba got her MIBG injection in preparation for her MIBG scan tomorrow. As you may remember the last time she had this injection 8 weeks ago she had an anaphylactic reaction which resulted in an ER admittance and a prescription for an Epi-Pen which we keep on us now.
Needless to say we were pretty nervous going into this again. This time we premeditated with Prednisone and Benadryl starting at 2am, then 8 am and 2 pm. The whole time during the injection there was a Doctor observing her. All the correct equipment was there this time, and the right size. They administered the injection through a pump over 9 minutes, waiting 15 minutes after the first 2 minutes were given. All of these changes made us feel more comfortable and Reba handled it very well. We are so relieved.
Tomorrow she has her scan.
Next Tuesday Reba will have a PET Scan and the following Wednesday an MRI- 3 anesthesias in 3 weeks! Busy, busy.
Then all this data from the scans will be considered and we will meet with our oncologist on the 28th to discuss the results and future.
Today (9/11) we were back at LPCH for the results of last week’s scans. Good news is that the mass is about the same, slightly larger. It is measuring approx. 6.2 x 4.7 x 8.1 (previously July’s scan was measuring 5.8 x 4.3 x 7.5).
The urine numbers are elevated slightly, VMA 37.4 and HVA 89.1 (previously around 25 and mid 70s).
The plan for now is to follow with imaging in 8 weeks with an MRI, MIBG and PET scan. Our oncs are aware of the reaction last week with the MIBG injection and moving forward we will pre-medicate with steroids and have a safer environment (child size equipment, appropriate drugs). At first we (parents) didn’t want another MIBG but our Doctor explained the importance of the information it provides- and specifically to neuroblastoma. So although we are scared we need to move forward.
Today Reba had both the MIBG and MRI scans, long day!
Zoe came with us and was wonderfully patient during the 8 hour day at LPCH. All went smoothly, and Reba is enjoying watermelon now after fasting since last night. The docs did give her more Benadryl and steroids and placed a small breathing tube during the scans, just in case.
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.