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When David was 15 months old, he was diagnosed with Anaplastic Ependymoma in the posterior fossa of his brain.
He had a fabulous neurosurgeon, who managed to remove all visible parts of the tumor. He had some temporary vocal cord paralysis, and had to stay intubated for a few extra days, but within another week, was out of the hospital and feeling pretty good.
We went up to Boston, and he received Proton Beam radiation under anesthesia for 6 weeks.
I took FMLA for his surgery and radiation, and then we returned to our previous life, plus a lot of doctors appointments.
He was diagnosed with hearing loss, and wore hearing aids for a year before his hearing inexplicably returned to normal. He received physical therapy, both from professional therapists, and from the best PT in the world, an active twin sister.
At the time of diagnosis, in April 2013, he had a spine MRI, which was clean. In October 2013, he had another spine MRI, which was also clean.
After that, they only scanned his brain. Every 3 months for a year. Every 4 months for a year. Every 6 months for a year. It was clean every time.
At 4 1/2, he did his first awake MRI, still clean.
At 5 1/4, he did another awake MRI, still clean.
In August, 2017, when he was 5 1/2, we moved to the DC suburbs.
At 6 1/4, he complained of "butt pain", and we added a spine MRI to his planned brain MRI. By the time of the MRI, the pain had resolved, but we kept it on schedule, just to be cautious.
He managed to do his whole brain and spine MRI awake, while watching Mary Poppins on the movie goggles.
On April 9th, 2018 his brain MRI was clean again, but his spine MRI had a new tumor at L5-S1.
On April 20th, it was removed by another fabulous neurosurgeon at Cornell. I was told that it was fully encapsulated and came out easily.
We planned to do local radiation again, and hope it didn't come back again.
Unfortunately, there was a tiny spot on L2 that the surgeon thought was nothing, and so he wasn't opened up that high. That spot was still there on repeat imaging, and the radiation oncologist and neuro-oncologist thought it was real, and a spot of tumor.
So the radiation plan changed to include L1-S1.
Unfortunately again, he had a lumbar puncture on May 2nd, and another one on May 9th which both documented ependymoma cells floating in his CSF.
Ependymoma tends to be a slow cancer. It was 5 years between his initial presentation and his recurrence, so I was hoping that it had come back in only one spot and that it could be treated locally and that it would come back for a long time, if ever. Being told that it was actually in 2 spots, and then that it was floating in his CSF was a gut blow.
Despite these gut blows, he remained asymptomatic.
Recurrent Ependymoma already has a fairly poor long term prognosis. It tends to come back again and again until it comes back somewhere that can't be treated.
Now that he has cells floating in the CSF, there are only a few treatment options, because the entire CSF needs to be treated. Local radiation will not work.
1. Cranial Spinal Radiation. This is the standard of care, and has, perhaps, a 40-50% success rate in achieving 4 years w/o evidence of progression (aka, suspected cure). Since he already had 4 years w/o evidence of progression, and then it came back, I suspect the actual cure rate is a bit lower.
In any case, it was made absolutely clear to me that Cranial Spinal Radiation has serious long term consequences. Severe neuro-cognitive deficits. One doctor told me that "your son will never live independently" if I chose this.
It was also made clear to me that the longer I can delay CSI, the less severe the "severe neuro-cognitive" deficits will be.
2. Chemotherapy. It's toxic. It may not work. If it does work, it's likely only buying time, not curing. However, it may buy enough time for more brain maturity before CSI.
3. Experimental treatment, with no data or completed clinical trials. There's a phase II trial going on in Georgia with an IDO checkpoint inhibitor + Temodar, but of course, how well it works is completely unknown.
I choose chemotherapy. He received his port and his first cycle of Vincristine / Etopiside / Cisplatin / Cyclophosphamide IV, as well as Methotrexate / Ara-C / Hydrocortisone into his spinal fluid on 5/23/2018.
He didn't want to go:
But once it started, he decided it wasn't as bad as he was afraid of:
And he rapidly gained skill in pushing his IV pole with all his stuffed animals on it:
If it grows back somewhere unresectable, I've lost my gamble, and my son.
If it doesn't grow back, but the CSF doesn't clear, then I can try experimental chemo or CSI.
If the CSF clears, I have more choices for more delaying actions, to give more maturity before CSI, and to pray that something curative that isn't as damaging as CSI comes along.
Overall, however, the odds of curing this cancer are low.
This leads to the reason for the GoFundMe.
Lots of friends and family have been asking how they can help.
Prayers, good wishes and good karma toward David are always welcome, but many folks want to do something more practical.
In light of the fact that I have no idea how long he will live, but that, other than chemo side effects, he's asymptomatic now, I have decided to spend more time doing fun activities.
He wants to go back to Jamaica. We didn't go this school year, because it didn't work with his school schedule. We will go sometime during the next school year because he loves it, and that trumps school.
In addition, there are new expenses - childcare for his sisters while I'm in the hospital with him. Medical co-pays. LOTS of medical co-pays.
I am not impoverished, and if you need your money, then please please keep it. However, having a kid with cancer does have a lot of extra expenses, and giving him a good time costs too.
If you have spare money and want to put it toward defraying the cost of his care, the cost of childcare, and the cost of giving him a good time, I will gratefully accept.
Thank you for reading,
Amy Chused
He had a fabulous neurosurgeon, who managed to remove all visible parts of the tumor. He had some temporary vocal cord paralysis, and had to stay intubated for a few extra days, but within another week, was out of the hospital and feeling pretty good.
We went up to Boston, and he received Proton Beam radiation under anesthesia for 6 weeks.
I took FMLA for his surgery and radiation, and then we returned to our previous life, plus a lot of doctors appointments.
He was diagnosed with hearing loss, and wore hearing aids for a year before his hearing inexplicably returned to normal. He received physical therapy, both from professional therapists, and from the best PT in the world, an active twin sister.
At the time of diagnosis, in April 2013, he had a spine MRI, which was clean. In October 2013, he had another spine MRI, which was also clean.
After that, they only scanned his brain. Every 3 months for a year. Every 4 months for a year. Every 6 months for a year. It was clean every time.
At 4 1/2, he did his first awake MRI, still clean.
At 5 1/4, he did another awake MRI, still clean.
In August, 2017, when he was 5 1/2, we moved to the DC suburbs.
At 6 1/4, he complained of "butt pain", and we added a spine MRI to his planned brain MRI. By the time of the MRI, the pain had resolved, but we kept it on schedule, just to be cautious.
He managed to do his whole brain and spine MRI awake, while watching Mary Poppins on the movie goggles.
On April 9th, 2018 his brain MRI was clean again, but his spine MRI had a new tumor at L5-S1.
On April 20th, it was removed by another fabulous neurosurgeon at Cornell. I was told that it was fully encapsulated and came out easily.
We planned to do local radiation again, and hope it didn't come back again.
Unfortunately, there was a tiny spot on L2 that the surgeon thought was nothing, and so he wasn't opened up that high. That spot was still there on repeat imaging, and the radiation oncologist and neuro-oncologist thought it was real, and a spot of tumor.
So the radiation plan changed to include L1-S1.
Unfortunately again, he had a lumbar puncture on May 2nd, and another one on May 9th which both documented ependymoma cells floating in his CSF.
Ependymoma tends to be a slow cancer. It was 5 years between his initial presentation and his recurrence, so I was hoping that it had come back in only one spot and that it could be treated locally and that it would come back for a long time, if ever. Being told that it was actually in 2 spots, and then that it was floating in his CSF was a gut blow.
Despite these gut blows, he remained asymptomatic.
Recurrent Ependymoma already has a fairly poor long term prognosis. It tends to come back again and again until it comes back somewhere that can't be treated.
Now that he has cells floating in the CSF, there are only a few treatment options, because the entire CSF needs to be treated. Local radiation will not work.
1. Cranial Spinal Radiation. This is the standard of care, and has, perhaps, a 40-50% success rate in achieving 4 years w/o evidence of progression (aka, suspected cure). Since he already had 4 years w/o evidence of progression, and then it came back, I suspect the actual cure rate is a bit lower.
In any case, it was made absolutely clear to me that Cranial Spinal Radiation has serious long term consequences. Severe neuro-cognitive deficits. One doctor told me that "your son will never live independently" if I chose this.
It was also made clear to me that the longer I can delay CSI, the less severe the "severe neuro-cognitive" deficits will be.
2. Chemotherapy. It's toxic. It may not work. If it does work, it's likely only buying time, not curing. However, it may buy enough time for more brain maturity before CSI.
3. Experimental treatment, with no data or completed clinical trials. There's a phase II trial going on in Georgia with an IDO checkpoint inhibitor + Temodar, but of course, how well it works is completely unknown.
I choose chemotherapy. He received his port and his first cycle of Vincristine / Etopiside / Cisplatin / Cyclophosphamide IV, as well as Methotrexate / Ara-C / Hydrocortisone into his spinal fluid on 5/23/2018.
He didn't want to go:
But once it started, he decided it wasn't as bad as he was afraid of:
And he rapidly gained skill in pushing his IV pole with all his stuffed animals on it:
If it grows back somewhere unresectable, I've lost my gamble, and my son.
If it doesn't grow back, but the CSF doesn't clear, then I can try experimental chemo or CSI.
If the CSF clears, I have more choices for more delaying actions, to give more maturity before CSI, and to pray that something curative that isn't as damaging as CSI comes along.
Overall, however, the odds of curing this cancer are low.
This leads to the reason for the GoFundMe.
Lots of friends and family have been asking how they can help.
Prayers, good wishes and good karma toward David are always welcome, but many folks want to do something more practical.
In light of the fact that I have no idea how long he will live, but that, other than chemo side effects, he's asymptomatic now, I have decided to spend more time doing fun activities.
He wants to go back to Jamaica. We didn't go this school year, because it didn't work with his school schedule. We will go sometime during the next school year because he loves it, and that trumps school.
In addition, there are new expenses - childcare for his sisters while I'm in the hospital with him. Medical co-pays. LOTS of medical co-pays.
I am not impoverished, and if you need your money, then please please keep it. However, having a kid with cancer does have a lot of extra expenses, and giving him a good time costs too.
If you have spare money and want to put it toward defraying the cost of his care, the cost of childcare, and the cost of giving him a good time, I will gratefully accept.
Thank you for reading,
Amy Chused