Today (11/22) we were back at LPCH for Reba’s MRI. In the spirit of Thanksgiving, here are a few things we are thankful for:
*a much easier IV start today at the Bass center.
*although the scan was over two hours delayed, Reba fell asleep in my arms before receiving the anesthesia, and therefore drifted off very peacefully.
*immensely grateful for compassionate, competent nurses.
*so grateful for family. My Dad (PopPop) came with us today and Zoe was in her Nana and Mimi’s care, before her Dad got home from work.
*it has been a year since Reba has been in chemotherapy treatment. As I type that, my heart skips a beat. My whole life wish is for this to continue in a positive direction.
*grateful for every moment with her.
the nurses said she should be a model
we made Christmas trees out of the pieces
food again yay
We will come back next Tuesday 11/28 for the results of the MIBG, PET and MRI scans.
Today 11/14/17 we were back at LPCH for Reba’s PET Scan.
Reba was excited to start the anesthesia today with an IV instead of the gas mask. For some reason though it took three attempts, three spots and lots of digging around to find her vein. Usually she is a pretty easy stick. So that was rough. Our plan for next Wednesday is to get the IV placed at the Bass Center (who we are very familiar/successful at starting IVs) then head down to the Scan.
Today’s scan went fine and we are glad to have two out of three done. Poppa came with us for moral support.
Next Wednesday Reba will have an MRI then we will meet with her oncologist to discuss the future.
happy to have food after waking up from anesthesia
Today Reba had her MIBG scan. Nik was super Dad and took Reba by himself today. I have never missed a scan, or any appointment for that matter. It was important for me to play for choir today because today was solo auditions and I won’t be back for a few weeks. Anyway, they had a Dad-daughter date and did great. I missed her beyond any describable terms but knew she was in her Dad’s hands. He is the best Dad. I don’t know any man who so lovingly and capable can handle anesthesia, chemo, cancer, with his baby. He is the best partner I could of ever asked for.
feeling sassy after anesthesia
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.
Feeling silly on steroids…
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.
Great news is we are free for 8 weeks woohoo!!
Wagon ride at LPCH
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.