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My 2.5yr old grandson has Stage 4 Cancer Update 3-15-21 Pg18. Was cancer free for 6 months, Cancer has returned, Beat cancer a second time! Login/Join 
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Best wishes for your family.


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Posts: 16088 | Location: Marquette MI | Registered: July 08, 2014Reply With QuoteReport This Post
Mark1Mod0Squid
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Well, there is good news but not yet great news.

Titus currently has 2 neuroblastoma lesions. One on 6th right rib and another on his left femur. He was back in treatment with outpatient chemo in Apr-Jun. Mid July it was discovered that the lesions were getting larger by about 20% so a different course of chemo was undertaken. This protocol included 4 rounds of inpatient (5 days each) chemo followed by radiation therapy, immunotherapy and stem cell transplants.

The kicker is that they want him to go to either Seattle Children's or Sloan Kittery New York for the immunotherapy & stem cell transplants. Seattle is out of the question due to flying. They can drive to NY in about 8-9hrs, but NY has a stupid quarantine in place and that even includes my daughter and grandson who have both had negative covid tests. One of the other parents and their child from the same hospital in VA was turned around at the airport with an appointment to Sloan Kittery last month. So at this time she is trying to work a schedule with her mother-in-law in Rochester NY to do her 14 day quarantine there then down to NYC for the treatment.

As it stands the prognosis is "get to the next step & go from there".

Thank all for keeping Titus in your prayers.


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Posts: 2027 | Location: AZ | Registered: May 14, 2008Reply With QuoteReport This Post
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All continue to be in my prayers...


Thom

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Posts: 2835 | Location: SouthWest IN | Registered: August 07, 2004Reply With QuoteReport This Post
Altitude Minimum
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Prayers for Titus.
Are there no other locations for treatment?
 
Posts: 1223 | Location: Shalimar, FL | Registered: January 24, 2007Reply With QuoteReport This Post
Mark1Mod0Squid
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quote:
Originally posted by BOATTRASH1:
Prayers for Titus.
Are there no other locations for treatment?


My limited understanding is that there are various places within the children's cancer network that specialize in a particular treatment based on a metric but ton of DNA markers. No one hospital can possibly contain all of the different treatments so they have the patient go where the home oncologist recommends based on those genetic DNA factors.


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Never use more than three words to say "I don't know"



 
Posts: 2027 | Location: AZ | Registered: May 14, 2008Reply With QuoteReport This Post
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Understand. Prayers for that little guy! I know he’s a fighter...
 
Posts: 1223 | Location: Shalimar, FL | Registered: January 24, 2007Reply With QuoteReport This Post
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Thanks for the update D. Prayer sent for him and all that love and care for him. Godspeed and good health little man!



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Posts: 19186 | Registered: September 21, 2005Reply With QuoteReport This Post
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Prayers sent
 
Posts: 1673 | Location: Waukesha,WI | Registered: December 19, 2009Reply With QuoteReport This Post
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We will be keeping Titus in our prayers.


_____________________________________________________________________
“Civilization is not inherited; it has to be learned and earned by each generation anew; if the transmission should be interrupted for one century, civilization would die, and we should be savages again." - Will Durant
 
Posts: 6403 | Location: Chicago, IL | Registered: December 17, 2007Reply With QuoteReport This Post
Big Stack
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It's Memorial Sloan Kettering. There's a Ronald MacDonald house nearby that might be useful in this situation if you need somewhere to stay. And to be blunt, no one is even trying to enforce the quarantine requirements.

quote:
Originally posted by Sigolicious:
Well, there is good news but not yet great news.

Titus currently has 2 neuroblastoma lesions. One on 6th right rib and another on his left femur. He was back in treatment with outpatient chemo in Apr-Jun. Mid July it was discovered that the lesions were getting larger by about 20% so a different course of chemo was undertaken. This protocol included 4 rounds of inpatient (5 days each) chemo followed by radiation therapy, immunotherapy and stem cell transplants.

The kicker is that they want him to go to either Seattle Children's or Sloan Kittery New York for the immunotherapy & stem cell transplants. Seattle is out of the question due to flying. They can drive to NY in about 8-9hrs, but NY has a stupid quarantine in place and that even includes my daughter and grandson who have both had negative covid tests. One of the other parents and their child from the same hospital in VA was turned around at the airport with an appointment to Sloan Kittery last month. So at this time she is trying to work a schedule with her mother-in-law in Rochester NY to do her 14 day quarantine there then down to NYC for the treatment.

As it stands the prognosis is "get to the next step & go from there".

Thank all for keeping Titus in your prayers.
 
Posts: 21240 | Registered: November 05, 2003Reply With QuoteReport This Post
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Titus will stay in my prayers til he is well. Thank you for the update.
 
Posts: 1955 | Location: Northern Virginia/Buggs Island, Boydton Va. | Registered: July 13, 2011Reply With QuoteReport This Post
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Prayers sent.


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Posts: 1170 | Location: Texas | Registered: March 03, 2016Reply With QuoteReport This Post
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Prayers for him and your family,
Spunk
 
Posts: 2774 | Location: Boston, Mass | Registered: December 02, 2000Reply With QuoteReport This Post
Too soon old,
Too late smart
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If you're entering NYS via car and on your way to Sloan Kettering, there is no reason to be concerned about the quarantine.


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Posts: 1489 | Location: NoVa | Registered: March 14, 2009Reply With QuoteReport This Post
Mark1Mod0Squid
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Been a while since I updated.

My grandson Titus, a little badass warrior, has beat cancer for the 2nd time!

Fuck you cancer, you can't have this one, he is too damned hard core for you!


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Never use more than three words to say "I don't know"



 
Posts: 2027 | Location: AZ | Registered: May 14, 2008Reply With QuoteReport This Post
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Outstanding news!



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Posts: 16208 | Location: Black Hills of South Dakota | Registered: June 20, 2010Reply With QuoteReport This Post
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Thanks for the excellent report. Continued prayers for all!!!!



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Posts: 1365 | Location: Southern Michigan | Registered: May 30, 2009Reply With QuoteReport This Post
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That is awesome!


The "Boz"
 
Posts: 1531 | Location: Central Ohio, USA | Registered: May 29, 2010Reply With QuoteReport This Post
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Thats wonderful!!!!


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Posts: 6226 | Location: New Orleans...outside the levees, fishing in the Rigolets | Registered: October 11, 2009Reply With QuoteReport This Post
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Good news. and glad to hear it.




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Posts: 53122 | Location: Texas | Registered: February 10, 2004Reply With QuoteReport This Post
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