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.

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

Today Reba had her MIBG scan. Nik was super Dad and took Reba by himself today. I have never missed a scan, or any appointment for that matter. It was important for me to play for choir today because today was solo auditions and I won’t be back for a few weeks. Anyway, they had a Dad-daughter date and did great. I missed her beyond any describable terms but knew she was in her Dad’s hands. He is the best Dad. I don’t know any man who so lovingly and capable can handle anesthesia, chemo, cancer, with his baby. He is the best partner I could of ever asked for.

feeling sassy after anesthesia

Today Reba got her MIBG injection in preparation for her MIBG scan tomorrow. As you may remember the last time she had this injection 8 weeks ago she had an anaphylactic reaction which resulted in an ER admittance and a prescription for an Epi-Pen which we keep on us now.

Needless to say we were pretty nervous going into this again. This time we premeditated with Prednisone and Benadryl starting at 2am, then 8 am and 2 pm. The whole time during the injection there was a Doctor observing her. All the correct equipment was there this time, and the right size. They administered the injection through a pump over 9 minutes, waiting 15 minutes after the first 2 minutes were given. All of these changes made us feel more comfortable and Reba handled it very well. We are so relieved.

Tomorrow she has her scan.

Next Tuesday Reba will have a PET Scan and the following Wednesday an MRI- 3 anesthesias in 3 weeks! Busy, busy.

Then all this data from the scans will be considered and we will meet with our oncologist on the 28th to discuss the results and future.

Feeling silly on steroids…

Today (9/11) we were back at LPCH for the results of last week’s scans. Good news is that the mass is about the same, slightly larger. It is measuring approx. 6.2 x 4.7 x 8.1 (previously July’s scan was measuring 5.8 x 4.3 x 7.5).

The urine numbers are elevated slightly, VMA 37.4 and HVA 89.1 (previously around 25 and mid 70s).

The plan for now is to follow with imaging in 8 weeks with an MRI, MIBG and PET scan. Our oncs are aware of the reaction last week with the MIBG injection and moving forward we will pre-medicate with steroids and have a safer environment (child size equipment, appropriate drugs). At first we (parents) didn’t want another MIBG but our Doctor explained the importance of the information it provides- and specifically to neuroblastoma. So although we are scared we need to move forward.

Great news is we are free for 8 weeks woohoo!!

Wagon ride at LPCH