1/9 and 1/10 we were back at LPCH for the MIBG injection, MIBG and MRI scans. We were scheduled originally for these scans mid December but because Reba was on antibiotics for strep throat they rescheduled her to January.
This is the longest we have ever gone between scans! The last set of scans was 8/23, so it has been 20 weeks!!! We have never gone longer than 12 weeks. On one hand we are so happy to have enjoyed so much time at home, not really thinking about it. On the other hand a little nerve-wracking to let so much time go by without checking on the mass.
As usual Reba was very brave for her IV starts, injection, anesthesia, all of it. The injection went fine, no reactions. We premedicated as we always do. 13, 7 and 1 hour prior to the injection with steroids and Benadryl.
Looking at 2019 our family goal is to remain positive and grateful. So far Reba has responded very well to the treatment she has received. She has been in observation for a year and a half. We pray and hope this will continue. Another goal for 2019 is to try to do the scans without anesthesia, if Reba can be still for an hour or so. We think she can and are going to try to make this happen. Wish us luck!
Results next Wednesday 1/16 with her oncologist. Will update with the plan. ❤️
Today (8/29) we were back at LPCH for the results form last week’s scans.
Good news- everything is stable! The curie score on the MIBG is still a 1. The MRI shows that the size is relatively unchanged, measuring at about 8.4 x 4.4 x 7.8 cm. The chest CT scan was clear, which is excellent as well.
The plan from here is to continue the same plan of labs in 6 weeks and scans in 12 weeks.
Praise and Thanks to God and we are so looking forward to another 12 weeks of freedom!
In between we live a blissful normal life- we enjoyed summer traveling, swim lessons, gymnastics, school, running and playing, magical creative play, and also blissful boring mundane life. All the good things…
Today (8/22/18) we were back at LPCH. It’s that time again. Today Reba had a chest CT, IV start and MIBG injection. The MIBG injection is the scariest for us because of previous reaction to the radioactive isotope. We started premedicating at 2am last night, then again at 8 am and 2 pm.
Everything went fine. We all took a huge deep breath when the injection went ok.
Tomorrow we are back for a long anesthesia day- first MRI then MIBG scans.
Today May 21st we were back at LPCH for the results of the bone marrow aspirates, chest CT, MRI, and MIBG scans from last week.
It is always agonizing to wait for these results. We spent the weekend down south at my cousin’s graduation from college, which was a lovely diversion but still agonizing.
The results are great, still stable!
The bone marrow is normal.
Her chest CT is clear.
The MIBG score is still a 1. It is still lighting up but not any more than it was previously.
The MRI is still measuring about the same. The mass is now 4.4 x 4.2 x 7.1 cm.
So in summary the mass is still present at about the same size. There are no new locations of disease. She is clinically doing fantastic.
The next step is labs and check up in 6 weeks, and scans in 12 weeks.
Big sigh of relief for all.
After we met with her oncologist we headed over to cardiology for an EKG and ultrasound of Reba’s heart.
Some of the chemotherapy she had can affect the heart and hearing so we get these done yearly. Reba held still and was a champ the whole time. She got to eat her crackers and watch a show. I’ll call for results on these tomorrow…
Today was a long anesthesia with iv start, bone marrow aspirates, MRI scan and MIBG scan.
A few hiccups included a “false start” or “start-pause” of the anesthesia, where they started but then stopped because of some paper I had to sign. While we were all waiting, Reba was very upset and drugged on propofol. She felt horrible. Finally the anesthesiologist said screw it we are starting and put her to sleep. I signed the stupid paper later. I also filed a complaint because it was unnecessary stress for Reba to feel that way.
Second hiccup was they gave her 5 additional drugs while under anesthesia which was not part of the plan. They gave her propofol (which we were expecting) Fentanyl, anesthesia gas (which makes her nauseous), zofran (to help with nausea) Tylenol (which I’m fine with) and predadex, which I’m still not sure what it is, some kind of additional sedative and according to the anesthesiologist an alpha 1 agonist which slows heart rate. This added insult to injury. I was told she would only be getting the propofol. She was also given a breathing tube when they told me that wouldn’t be necessary today. So when she woke up she had a bad cough and sore throat.
The good news is we are done and home now! It was a long day, just me and Reba. Hospitals can be very lonely.
The bone marrow aspirates were done in her lower back and are pretty ouchy now.
Today 5/16 we were back at LPCH after a wonderful 12 week break.
We started premedication at 2 am and again at 8 and 2pm to try to prevent a reaction to the MIBG injection.
The drugs made Reba feel yucky. But all that is behind us- she did great today. No reaction thank God. I was going to take pics of the MiBG injection but was so nervous I literally couldn’t move.
Today was also a CT scan and Reba did it without anesthesia- this is a first! She did fantastic. Nik was able to lay on the table with her and hold her hands (I can’t because I’m pregnant). Reba doesn’t usually get chest CT scans but they saw something (hopefully nothing!) on the last MRI they wanted to take a closer look.
Tomorrow will be bone marrow aspirates, MRI and MIBG scans all under anesthesia. It will be a long day. Then back next Monday for the results! Reba hasn’t had the bone marrow aspirates for a year so we are praying it isn’t too painful when she wakes up.
Zoe came with us today. She was going to stay home but Reba asked her to come and Zoe said “of course.” They are the best of friends.
What an amazing honor to become a Mother. I never knew how it would feel to become one… how wonderfully fulfilling and also painstaking.
Having a child with cancer has been a pain that I cannot describe in words. As a mother how do I protect my child from toxic chemicals, surgery, pain and evil cancer? Utter helplessness.
These last two days we have been at a neuroblastoma conference to learn about the latest trials and treatments out there. We are all trying to survive. When cancer enters the picture the sense of awareness, of living in the moment, of love, is all heightened.
For that I am grateful. May we all love more fiercely and become ever-present in the moment.