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.
Results are good from today (2/19/18), Stable! It’s the same as it’s been, which is good. It’s no bigger.
The mass is measuring 6.1 cm x 4.6 cm x 8.1 cm. In 12 weeks they want to do a chest CT and bone marrow aspirates to dig deeper for a more thorough look. This will be in addition to MIBG and MRI.
All in all this is the news we were hoping for. Of course if the mass started shrinking or went away we would be thrilled, but the fact that it’s not growing is wonderful.
Off for 12 more weeks!
Today 2/15/18 Reba has her MIBG and MRI scans. It was a long day of no eating and anesthesia.
Everything went well and big sis came too. That made things more fun.
The new hospital at LPCH is beautiful- there are so many animals everywhere. It’s amazing and very kid-friendly.
We will be back Monday for results! Keep prayers for positive news!
Today 2/15/18 we were back at LPCH for Reba’s MIBG injection. It went really well. In the past Reba has had a reaction to this injection so we always get nervous. This time we premeditated with steroids and Benadryl and it went fine.
Tomorrow we will be back for MIBG and MRI scans, under anesthesia.
Next Monday we go back for results! Keep Reba in your prayers! Happy Valentines Day!
So the results are good- stable!
We are so relieved. The plan is to come back in 6 weeks for labs and checkup and 12 weeks for more scans.
We are really looking forward to a wonderful holiday season free of hospital!!
Praise the Lord!!!
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.