I returned to Toronto on March 10th. At least one of us has to work. Already, we’ve both taken a significant amount of time away from work because of our circumstances. It’s never easy to leave your sick child behind. But, we do what we must. Thankfully, Indira’s mom came down for a week to help out. Last friday, with my brother inlaw we drove down to memphis together. Since I am back to work, we needed someone to help Indira. Having a car down there also helped quite a bit. Surprisingly, Steve has been quite the help. So, a big thank you to Steve.
While it was nice to be back – and being back home made me feel displaced not belonging neither here in Toronto or there in Memphis – it turned out to be one of the worst days of our lives. On sunday during rounds, Dr Shook pulled us out and told us that they found neuroblastoma cells in Maya’s bone marrow. It was partially differentiated, but still it looked like ganglioblastoma, which means it is malignant. It was like being hit by a mac truck. Oh dear god. We’ve finally run out of room was our first thought. What we were told were:
- Roughly 10% of the marrow contained ganglioblastoma.
- We can’t draw any conclusions based on a single view of the marrow.
- We know that a BMA performed some 50 days or so did not have any evidence of neuroblastoma.
- Good news is that there was no myelodisplastic cells. In other words, we are cured of MDS.
- Maya is not strong enough to get additional chemo. For that matter, it was suggested that our time with chemo has come to an end as well. After all, after four years of chemo therapy, it has not resolved Maya’s disease.
Oh no. What do we do now? Both Indira and I had a good cry. And over the course of the weekend in the midst of dealing with our own grief, we’ve had some pretty sobering discussions. We are close, but it’s not over yet!
Firstly, the doctors from St Jude were also shocked. They were also scrambling to determine the next steps. Our principle investigator Dr. Triplett reached out to the solid tumor team to gain some insights into what the next course of actions could look like. Dot the I and cross the T’s is what was recommended. In other words, we need to determine what the disease status is.
- Look at the catecholamine level in Maya’s urin. Catecholamine level correlates with neuroblastoma. Although not fail proof, for most, it provides the disease burden metrics.
- Let’s follow up with MIBG and CT to get a better look at the disease status.
- Maya would likely not qualify for any therapy in the solid tumor because she has a secondary malignancy. However, given that Maya technically does not have MDS now, Dr Triplett would make a strong case for additional therapy. That would mean NK cells + antibody. So, not chemo per se.
In the mean time, steroid use was stepped down aggressively. Since steroids suppress immune response, we wanted to have her immune cells come back and start taking care of this new progression. Why is neuroblastoma acting up? There were two thoughts. First conjecture is that since we’ve removed Maya’s immune system, neuroblastoma was progressing unchecked. Second idea is that azacitadine used for MDS had some efficacy against neuroblastoma. Of course, these were all conjectures.
On our side, Indira and I discussed and agreed that if St Jude can not offer us anything that we could not access in Canada, we would take Maya home. If we’ve reached the end of the runway, we’ve reached the end. And I promised Indira that Maya will not suffer as much as some neuroblastoma children have in their last days. In her passing, Tayah Fairweather showed us how to minimize the suffering. Tayah… thank you.
The weekend passed and in the midst of these troublesome times, we were also discharged. Currently, there was no reason to keep Maya in isolation. And with that, we were discharged. Keep tomorrows worries for tomorrow. Both Indira, Steve and I enjoyed bringing Maya to the Target house. It’s so nice to see Maya sit up on the couch and simply watch T.V or play a game. So much better than being infirmed.
And yesterday finally, we had our MIBG scan. The results were puzzling to us. Maya did not light up at all. In all the MIBG scans in toronto, because Maya still has a lot of bulky disease, she lit up like a Cristmas tree. Here, there was no uptake of the Iodine isotope. In addition, catecholamine level was normal.
At this point, the thought is that during BMA, we hit an old section that had some residual disease that’s been hanging around. Of course, there is no way to tell. So, the scans are being sent to Toronto so that the team here can take a look and make an assessment. The only way to tell is where we are with the next BMA in 2 -3 weeks from now.
These wild swings are not atypical for us. We’ve been here before. But it’s never easy. With a sentence, we were cast down into a the depth of despair. And with a sentence, we are able to breath again. Such are the lives of a pediatric cancer family. Regardless of what happens in two weeks time, two months time, or two decades time, what I can tell you is that there is no joy like being Maya’s parents. She, along with Taylor are like the sun, the moon, the stars and everything for us. As Sharon Richard, who lost her son to neuroblastoma said, the cost of losing her child was worth having him in their lives. We feel that way too. Precious is this life we take for granted. While I can not say that I am thankful for being in our predicament, I am thankful to get to see how wonderful life is to have our children in our lives.