Every 12 weeks we come back here.
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…
The good news is that we are done with today!
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.
Please pray for great results on Monday!
Before and after:
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!