Today 7/5/17 we were back at LPCH for Reba’s MRI. Everything went smoothly and on-time! We will go back tomorrow for results- what a fast turnaround. Prayers for excellent results.
Author: Nik & Leah
We are overjoyed to share that today we received great news! The PET scan showed very little uptake- our oncs are saying that the PET scan is discordant with the MIBG scan. The mass is lighting up very slightly, at an SUV max of 2.3. This is not very much at all!
So what that means for us is we get to wait, live normally and enjoy life!!
Reba will have monthly lab work and another MRI in 8 weeks.
Today is a great day for us!!!!!
Today 3/6/17 we were back at LPCH for the results from last week’s scans.
Basically everything seems to be the same. The MIBG is still lighting up and the MRI is still measuring the tumor about the same: 4.1 x 5.1 x 6.4 cm whereas the last MRI measured 3.5 x 5.1 x 6.6 cm. The impression is that it is the same with slight variance due to the difficulty of measuring the mass (different people measuring).
The next step will be a PET scan. This is a different kind of scan that will show us where there are regions of inflammation. We are hoping of course for it to be negative where her tumor is. In some cases the MIBG will still light up even when the neuroblastoma has matured or differentiated. So the PET scan will give us more information.
We are hoping hoping hoping the PET scan is negative because then we will be able to go under observation for a bit, meaning no treatmeant . If it’s positive they may talk to us about more treatment, but not for certain.
In other news Zoe fractured her clavicle… Never a dull moment.
Long day done!
Wow what a day. Glad to be driving home from LPCH now at 7 pm. Today 3/2/17 Reba had an MIBG and MRI. They were running about an hour behind getting started, which is really hard for a two year old who isn’t allowed to eat. The scans got started around 2. Glad to have it behind us and anticipating Monday for the results and plan.
Today 3/1/2017 we were back at LPCH for the radioactive isotope injection in preparation for Reba’s MIBG scan tomorrow. Neuroblastoma will take up the isotope, so we are hoping not to see much uptake as that will show the vitality of the tumor decreasing. Reba also has an MRI tomorrow, so it will be a long day of no food and long anesthesia.
We will meet with her doctors on Monday 3/6 to discuss the results from the scans and the next step.
We were back at Stanford today (1/3/17) for the results of last week’s MRI.
It is basically the same size. This is not bad- it is great the mass hasn’t grown.
The next step is to start the next cycle of isotretinoin tomorrow. This will be the fifth cycle of this particular medication. Then we will do a sixth cycle as well. After these next two cycles they will do another MRI and an MIBG to monitor the mass, towards the end of Febuary.
One step at a time until we beat this thing. We are so grateful to have such a good team of oncologists.
Today 12/27 we were back at LPCH for an MRI. All went well, in fact they took her early! This never happens…. So that was very nice. She handled the anesthesia fine and now we are heading home.
Next Tuesday we meet with her oncologists to discuss the results of the MRI and the next step.
Reba has completed 4 cycles of the isotretinoin so far and may need two more cycles of this particular drug, we’ll find out next week.
In looking back at 2016, Reba has had 12 cycles of chemo, two major surgeries and a lot of medication. It has not been an easy year. But through it all we are lifted up by the support of our Doctors, nurses, family and friends. We are extremely grateful for all the help, support, prayers, well wishes by all and are very humbled by the delicate reality of existence.
Today 10/31/16 we were back at LPCH for the results from last week’s MRI.
There is no significant change in the mass. This is good news- we are so glad it is not growing! Of course we want it to shrink but are so thankful it is not growing. The mass is measuring 4.7 x 3.2 x 6.3 cm.
The next step is to continue two more cycles of the isotretinoin and then recheck the mass with MRI December 27th.
Because it is Halloween the girls dressed up and after we went to a pumpkin patch that had a petting zoo and a bouncy house!
Today we were back at LPCH for an MRI. Reba has had two cycles of the isotretinoin so now is the time to look and see how the tumor is responding to the new drug- hopefully very well!
Reba handled the anesthesia just fine and next Monday the 31st we will be back for the results.
Please pray for excellent results…