Posts tagged with port-a-cath

Intrathecal Trial Update – New port (hopefully)

Posted Wednesday June 27, 2012 by Melissa

So we recently learned about the new port-a-cath that is contemplated to...

So we recently learned about the new port-a-cath that is contemplated to be used in the next phases of the intrathecal clinical trial. If you’ve followed along, you’ll know that...

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Soph-a-port mini

Intrathecal Trial Update – Highs and Lows

Posted Saturday June 09, 2012 by Melissa

I’ve often said that a clinical trial is not for the faint...

I’ve often said that a clinical trial is not for the faint of heart and this past month should testify to that. We were at UNC from May 14-25. We...

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Bunny suit

Intrathecal Trial Update – Of Ports and Prayers

Posted Wednesday February 01, 2012 by Melissa

We are in North Carolina on the tail end of our visit...

We are in North Carolina on the tail end of our visit for IT dose #15. The dose was successful, meaning they were able to access the port, draw off...

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Intrathecal tattoo

Milestones

Posted Wednesday July 20, 2011 by Melissa

Milestones are things we hear about before our babies are ever born....

Milestones are things we hear about before our babies are ever born. There are pregnancy milestones that then become first year milestones, and second, and on and on. For many...

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IT dose 8

MPS II Intrathecal Trial on Hold

Posted Wednesday June 15, 2011 by Melissa

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial...

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial was lifted by the UNC Institutional Review Board. ———————————————– A clinical trial is never a place to get...

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Taking Time

Case’s Elaprase Treatment

Posted Saturday April 02, 2011 by Melissa

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital...

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital to receive an infusion of a drug called Elaprase. So, by now, Case has had approximately 80 infusions...

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Hospital bed sleeping

One Port, Two Port, Red Port, Blue Port

Posted Tuesday March 29, 2011 by Melissa

Today, Case received his 4th dose of intrathecal idursulfase or Miracase as...

Today, Case received his 4th dose of intrathecal idursulfase or Miracase as we’ve dubbed it. Now, this sounds like a smooth ordeal, but the potential for hangups exists all along...

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Mommy and Case