Today was scan day. It was our first time at Primary Children’s Hospital in Utah. New Hospital, new oncologist, Dr. Fluchel. After being at Packard in Stanford for 6.5 years we were hesitant to switch our care team. Scared of starting somewhere new. We wanted to move to Idaho years ago but were too afraid to make the leap of faith. But now we have. ..and no regrets! Today was a great experience for Reba. She had MRI with contrast and labs. They had virtual goggles just like Stanford so Reba could watch a movie during the long 2 hour scan. She’s such a trooper- didn’t move a muscle for over two hours…. incredible.
Then we met her new Doctor, Dr. Fluchel who had reviewed a huge box of Reba’s history from Stanford and is helping ease us into this new transition and communicate with Stanford as we move forward.
The MRI shows the mass is more or less about the same size as it was in February, measuring 5.7 x 8.8 x 9 cm. In February it measured 5.5 x 7.9 x 9 cm. Because of it’s difficult shape, it is hard to measure the mass exactly the same way. Our new doctor is happy to have a new baseline as we move forward. So for now we wait on lab results (blood and urine) and plan on coming back in 6 months.
Changes. Moving to a new state. A new home. New school for the girls. New oncologist for Reba. Shocking and yet refreshing. We are grateful we took this leap of faith.
“Courage is the choice and willingness to confront uncertainty. Life is all about taking risks. If you never take a risk, you will never achieveyour dreams.”
Today is a good day for us- the tumor is basically the same size. It is great news that is has not grown. Praise God. The tumor is measuring 5.5 x 7.9 x 9.0 cm.
Bloodwork all looks good, we are still waiting on the HVA and VMA marker results. But in general it is unchanged since June and so the plan will be to continue to watch… so we will check again in 6 months. 6 more months of freedom- we’ll take it!! Have a great day everyone!
Wow I can’t believe the last time we were writing about a Stanford procedure it was last June…. 8 months ago. In that time, Reba turned 6 years old, we navigated through covid, Thanksgiving and Christmas came again, our beloved Mountain house sold, we bought our first house in Idaho and our new baby is expected any day now. And yet here we are suddenly faced with “scanxiety” today as Reba had an MRI to measure and check on the tumor. It’s so easy to slip back into our normal routine, pushing the tumor out of our lives. And yet it is so important to stay on top of it, to make sure the silent beast doesn’t become strong again.
Reba had a big day at Stanford with an MRI, labs, ECHO and EKG. It was just her and Daddy because covid protocol only allows one parent with the patient currently.
Reba handled everything superbly- was able to do her scan without anesthesia, didn’t even cry for the IV (first time!), and sat still for her heart scans.
A few disappointing set backs included an unnecessary covid test for Reba; they thought she was getting anesthesia therefore required the covid test, but this is her fourth scan without anesthesia so that wasn’t necessary. Let’s just say I’m glad Nik was there to receive that news or this mama tiger would have gotten quite upset for the pain Reba had to endure for no reason. Also Nik had to advocate for her labs to be collected, and the order for EKG was also wrong and stalled the procedure… so for being one of the best hospitals in our country quite a few setbacks today that were completely avoidable and that does not inspire confidence. Good thing we’ve been fighting this for 6 years and could tell/insist on exactly what she needed today…
We will return 2/17 to talk to Reba’s oncologist about the scan results and the plan moving forward. We have a lot of questions as we prepare to move to Idaho- will we remain under Stanford’s care? Dare we switch hospitals? With faith and prayer we will navigate these big changes.
Prayers for the best results Wednesday please….❤️🙏
Today 6/10 we were back at LPCH after 6 months off! Reba had an MRI today to check on the tumor.
She did the MRI without anesthesia for the second time perfectly! Everyone was so impressed with her ability to sit perfectly still with her arms above her head and a big film table on her abdomen. She’s amazing.
The MRI shows a little growth. It now measures 5.9 x 8.0 x 9.4 whereas before it was 5.6 x 7.5 x 9.1 cm.
Still our oncologist Dr. Majzner recommends that we continue to watch it and check it again in 6 months. She is doing so well, we don’t want to mess around with treatments unless we need to.
Thank you all for your continued prayers and support.
Today we were back at LPCH for the results, and everything looks the same so this is good!
Reba’s oncologist Dr. Majzner is happy with the results and wants to see her back in 6 months for another MRI. Doing this last MRI was very successful awake, her first time(!) so we will plan on doing that again.
The MRI report says that the mass appears similar in size to the prior study of 5/9/2019, and measures approximately 5.6 x 7.5 x 9.1 cm.
This is the best Christmas present, peace of mind for the next six months! We are always trying to learn how to live with Neuroblastoma but as long as it is not hurting Reba we are happy just watching the mass carefully. We left with no stuffed animals and are returning with 6 new stuffed animals 🧸 🤦♀️. LPCH is generously handing out presents to the children for Christmas. Such loving and caring volunteers here. ❤️❤️❤️
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. ❤️