The pathology report came back today. These are the results of the examination (visual, under the microscope) of what was removed from Tighe last Friday.
Unfortunately the results were not what we'd been hoping for. Neuroblastoma cells were still present. There were some dead cells and some differentiated cells as well, but to quote the doctor "not as much totally dead cells as we sometimes see". We got the results over the phone today. So although we have some information (which I will detail below) we will get more details when we meet with Dr. Twist and Dr. Tan in person next Monday.
So, what does this mean?
1. It's important to remember that this was an examination of what was removed from Tighe, not what remains inside him. The doctors are using the results of this pathology exam as a basis for their hypothesis on what the remaining tumor might look like (that very small part left in Tighe's lower spinal column).
2. It does not mean that the remaining tumor will continue to grow if we do nothing about it. In fact, Dr. Twist said that if we did nothing else, no more treatment whatsoever, there is less than a 20% chance that what is left inside Tighe will start growing again. There is more than an 80% chance that what is left will either remain stable or even regress on it's own. Neuroblastoma is one of those rare cancerous tumors that do inexplicably spontaneously regress (just as they inexplicbly appear in the first place). Actually Tighe's pediatrician Dr. Gallagher (who first found the tumor) said that she had encountered Neuroblastoma just once before in one of her patients. It was small enough and in a location that was deemed not to be treatening any other organs. The prescribed treatment was to just monitor it. That's all they did and it disappeared on it's own.
Next steps...
We will visit with the doctors early next week to get more information and to discuss the next steps. The most likely outcome will be that Tighe goes into monitor mode. This means they will do a baseline MRI in about a month to establish the size/position of the remaining tumor. Then every two months or so for the next year he will have an MRI to see if the tumor changes at all (growing, shrinking and remaining stable are all possibilities). Doing an MRI every two months is more aggressive that average, but it is a interval over which if the tumor did start growing again there would be sufficient time to take corrective action.
If it did start growing again, there are options wrt what that corrective action would be. Dr. Twist seems to feel that more chemo would be the next step. She still feels that neurological surgery is a last resort. But all options are still on the table. If it comes down to it, I'm confident that the neurosurgeons at Lucille Packard would be more than up for the job.
So, that's where we are. We do have more questions that need to be answered, and I'm hoping to get those questions answered when we meet with Dr. Twist in person next week.
I'd like to sign off with a few positive thoughts...
1. More than 99% of the tumor that was inside Tighe on December 2nd 2008 is now gone.
2. There is a greater than 80% chance that what remains inside him will either not grow or will regress on it's own. That's an 80+% change that Tighe will not need any more treatment.
3. Tighe (very likely) will have at least three months of no treatment. Yes, there'll be interim check-ups, maybe as much as once per week in the coming weeks, and two MRIs, but for the most part we can get back to some kind of normalcy. Tighe can eat well and develop without the interruption of harsh medications, stays at the hospital or multiple visits to the hospital every week. We took a walk down to the park after I got home from work tonight. All the boys enjoyed having a go on the swing and Clara had a great time running around. Tighe especially couldn't wipe the smile off his face. I'm hoping we can give him lots more time like that with his whole family together in the coming months, uninterrupted by medical treatments.
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8 comments:
I know it's not what we all wanted to hear but as you said Tighe has come a long way since Dec 2nd and in time it will all be gone. I heard it said the best medicine is smiling and Tighe certainly has that. In the end Tighe will be rid of it all. I still light a candle for Tighe everyday and only wish I was living nearer to you all.
Hugs and Kisses to you all. Always thinking of you all.
Bryan you are in a good place at the moment compared to when you first found out in 2008..........and about spending time with all the family with no medical treatment.....i here you barking big dog keep up the good work.............from the rocket
Dear Gigi and Bryan, Thanks for the up date. Whilst the news is not the 100% we wanted, we have to relalise it is 99% since he started.
It is great that he will have three months free of treatment to build up his strength, please God he will need no more heavy treatment and the rest of this tumor will just disappear. We were glad to see him going to the park and enjoying himself. Hope you and gigi can relax a little more. Love mam and dad.
The good news is that the surgery removed those nasty neuroblastoma cells and I am still confident that the remaining cells will regress.
Couldn't sleep and then found this report, so I will return to bed and pray harder, like I did last week.
Believe me, those boys were happy and smiling when we left on Tuesday.
“It is easy to be pleasant when life flows by like a song, but the man worth while is the one who will smile when everything goes dead wrong. For the test of the heart is trouble, and it always comes with years, and the smile that is worth the praises of earth is the smile that shines through the tears.”
Wishing you many more park visits. Tighe is doing great! I was never a great student but 99% is good in my book.
Love to all...
Jennifer, Mike and Joseph
Thanks for the update guys, although not entirely the results we were hoping for, the news is still undoubtably really positive. With Tighe's own fighting spirit and the fact he is getting stronger each day now that the chemo has stopped, i'm sure in no time at all the last 1% of tumour will regress into nothing....
Hope you all have a lovely weekend in sunny CA!
Lots of positive thoughts and prayers for Tighe to continue on his road to recovery! He is an amazing little gift from God!
Lots of love to you all!
Scott, Kriste, Alex, Drew and Emily
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