Results and EKG + Ultrasound

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…

Long day! 5/17/18

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:

CT scan and MIBG injection

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.

Happy Mother’s Day❤️

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.

They made me a mom!

Results

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!

Scans

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!

MIBG injection

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!

MRI

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.

PET Scan

Today 11/14/17 we were back at LPCH for Reba’s PET Scan.

Reba was excited to start the anesthesia today with an IV instead of the gas mask. For some reason though it took three attempts, three spots and lots of digging around to find her vein. Usually she is a pretty easy stick. So that was rough. Our plan for next Wednesday is to get the IV placed at the Bass Center (who we are very familiar/successful at starting IVs) then head down to the Scan.

Today’s scan went fine and we are glad to have two out of three done. Poppa came with us for moral support.

Next Wednesday Reba will have an MRI then we will meet with her oncologist to discuss the future.

happy to have food after waking up from anesthesia