Today (5/14/19) we were back for the results from all the scans done last week. The mass has grown slightly but not enough to worry our doctor or do anything right now.
Our new oncologist Dr. Majzner is fantastic- we are excited about beginning this new chapter with him! He thinks we can just do an MRI in 6 months, and push back another MIBG for 12 months. This is such a relief because the MIBG injection is high stress with her previous reactions and also a lot of radiation with the injection and the scan itself.
So in 3 three months we will be back to Stanford for labs, blood/urine and also her audiology (hearing) appointment and heart ultrasound and EKG.
The bigger issue and question in the long run is will it continue to grow? Currently the mass is measuring 5.7 cm x 7.7 cm x 9 cm. In November of 2015 the tumor measured 2.8 cm x 4.1 cm x 2.9 cm. So over time this is a significant growth. Every scan has shown just a little growth but comparing the 2015 size with the size it is today, it is worrisome with the amount it has grown.
Our new oncologist Dr. Majzner is very knowledgeable with Neuroblastoma and he thinks we shouldn’t do anything until a problem presents. Reba is doing great, feels great. He feels there is no reason to suggest any surgery or chemotherapy at this time. Which is a relief, but also worrisome when we know there has been significant growth over time.
As usual Reba was a super trooper today (5/9/19). It was a long day but all in all went well.
Her first procedure was the bone marrow aspirates, two samples from her lower back. Her back is sore but not too bad.
She then had the MIBG and MRI scans. About 5 hours under anesthesia.
We are very grateful that today we had an anesthesiologist who really listened to us about our conservative approach to drugs. There were no surprises when we came back to the recovery room, she only received the propofol and Tylenol.
Next Tuesday 5/14 we will be back to review the results with a new Attendee…🤞🙏
Well after a very nice break we were back today, 5/8/19 for Reba’s day 1 of 2 scans.
Today consisted of a chest CT scan, IV start, and MIBG injection. Because Reba has had reaction to this injection in the past we pre-medicated her with prednisone 13, 7 and 1 hours before the injection. Also one hour before the injection we gave her Benadryl.
The injection went smoothly, big sigh of relief. We always get nervous.
Tomorrow will be bone marrow aspirates (her yearly), MIBG scan and MRI scan. It will be a long day under anesthesia tomorrow.
Thank you for your well wishes, prayers, and intentions for continued stability or even shrinkage! ❤️
Wednesday 1/16/19 we were back for the results of the scans and everything remains stable. Thank God!!
The MIBG curie score is still a one, so still lighting up but very little. The mass is measuring 8.5 x 4.5 x 8 cm, which varied a bit from last time but they think it’s because of the hard to measure shape of the mass. Another encouraging piece of news is her VMA and HVA levels are lower, now at 21.8 and 45.7. (This is good- heading in the right direction, down instead of up!!)
Our oncologist of 4 years also let us know he is moving hospitals. We are of course surprised- happy for him, but nervous for us. Who will the next oncologist be? Will we stay at Stanford? How can our oncologist who has been there since the beginning leave? Do we follow him? We have a lot of considering to do to help guide our way. Please pray for clarity in making the right decision.
The plan moving forward is to have scans in May and also bone marrow aspirates. We are so thankful for continued stability. May we never forget or get too comfortable in our bliss.
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!