Friday, May 7th, 2021

Day 7 - MIBG Scan and Staging

Today was the day we knew was coming. 

Declan needed to go without food for a while to get prepared for his MIBG Scan. After this scan, Declan could then be staged and be given a Curie Score. This would determine his course of treatment and give us an idea of what we are dealing with long term. 

Since Declan needed to have an empty stomach, he needed to stop eating by 8AM for his scan at 2PM. There was a little bit of leeway and rules regarding this “empty stomach”

-Formula feeds need to stop 6 hours prior

-Breastfeeding needs to stop 4 hours prior

-Pedialyte can be administered up to 2 hours prior

Needless to say, Declan took advantage of ALL of these times. Taking in his regular formula before 8AM, nursing on Jen until 10AM, and confused but happy to take a clear liquid from a bottle until noon. After that time, however, the ROID MONSTER arrived. 

Since Declan had been given steroids to help reduce inflammation and hopefully the pressure on his spine, he has turned into a lean, mean, eating machine. Before we struggled to get him to take more than 2 oz by bottle, now he can’t get enough! 

This was a struggle for Declan and his hunger quickly outweighed any other feeling he had. Loud wails and screams echoed through the halls of the 7th floor. Declan was MAD. 

Another fun side effects of steroids. The “roid rage”. He certainly was more irritable, and consoled mostly by feeding him (that and he could bench press 700 lbs – just kidding). 

The time came for his scan and we were going to be missing our little boy again for a good chunk of time. This time was less stressful, as there was no surgery involved, just pictures. Jennifer and I enjoyed a nice lunch outside while we contemplate what the results of his can could yield. We planned for the worst, yet hoped for the best. 

He had awoke from his scan and was a lot more alert and attentive than after his surgery. He wasn’t under a full general anesthesia; he was given Propofol. 

We waited around in the recovery room for a little bit before making our way back to our room. Declan had the same recovery nurse for his scan as he did for his surgery, so he was already making friends. Just as soon as we were escorted back to our room, the oncology fellow met up with us within the hour to give us results of the scan. 

This was it. 

This is what we had prepared for. 

The doctor had multiple papers in hand, presumably the plan for his upcoming chemotherapy treatments. 

So the MIBG scan gives him a Curie score, which measures how much of his cancer has spread and scores it on a scale from 0 to 30. 30 being the high end where it is everywhere, and 0 being no sign of the disease. 

HE SCORED A 1! Just a 1! 

Which means that the tumor is the only part in his whole body that this awful cancer had found itself. What a relief. It was very favorable news because it was one thing to watch with treatment moving forward, but also was promising that once this tumor size was reduced, there is the prospect of removal from surgery or complete eradication (though the doctor’s goal is to at least see a 50% reduction). 

He was determined to be a stage 3, intermediate risk Neuroblastoma. The only reason it is stage 3 is because it crossed the “midline” and has spinal cord involvement. Otherwise, they may have just been able to surgically remove the tumor and have that be it. 

There were many tears of joy, but we knew this was only the beginning. He still has his chemotherapy treatments to go through, and hopefully his tumor responds to the treatments. As of right now, the treatment plan is 4 rounds of chemotherapy, and they’ll re-image along the way to assess how he is responding to treatments.