December 19, 2011 mcfadyena

An update in honour of my grandma

March 1, 2004
My eighty-six year old grandma, Omi, got her first ever computer and a wireless internet connection about a month ago, so she coud read Trey’s blog (she lives a five minute drive from us and comes over at least 5 days a week, but as she explained, with three kids, there is never time to talk). My dad emailed me last night, telling me Omi’s wondering why I haven’t blogged how the past week at UNC has gone, so this one’s for you, Omi.
Fortunately, the lack of update means that everything has gone well. Trey got his 30mg dose of Elaprase into his central nervous system by lumbar puncture Tuesday afternoon and he spent the rest of his day and night in the Short Stay Unit. Although he didn’t sleep AT ALL that night, which led to a few days of recovery, it’s peanuts in the scheme of things. Wednesday morning Trey was transferred to the CTRC (Clinical Trial and Research Centre) and there he stayed until Friday morning.
Wednesday we had a visit from Chris Dutcher, a man we met for the first time, who has MPS II. He brought treats for Trey and stayed for quite a while. We also met a local Shire rep. Between Chris and this Shire rep, I am learning a lot about health coverage and rare disease treatment in the US!
Thursday Trey got his IV Elaprase infusion. Otherwise things were uneventful. We’re making good use of the inpatient playroom, which is open three times daily, we make the long trek across the hospital to Starbucks daily, so Trey can get some ‘bubbly water’ or vanilla or chocolate milk, and otherwise, we find ways to fill the day. When the ward is quiet, we play leap frog, soccer or hide & seek in the hallways. Colouring and Nick Jr. also help. The great thing about this visit is that Trey did not have an IV. On the first, sixth and 18th visits, Trey has an IV in for 4 days and is really limited in terms of what he can do. This trip was easy in comparison.
Once discharged, while Trey and Ryan spent the weekend partaking in Five Guys and UNC sporting events, I spent the weekend with a friend and her family. Her son also has MPS II and although I’ve known her for over two years and shared many many tears, fears and questions with her, we’ve never met. It was surreal and wonderful. She is family.
Today we met with Dr. Muenzer and Heather for a brief neuro exam, which turned into a two hour conversation. Dr. Muenzer is unbelievable. I continue to be amazed by his compassion, respect, collaboration, and consideration, in addition to his knowledge and experience. The amount of time he spends with families is astounding. We don’t yet have dates for a port placement (we didn’t end up getting to meet with the neurosurgeon), but we’re hoping to link it up with his end of study tests, between dose five and six, which could mean we’ll spend all of March and half of April in NC. We head home tomorrow, which could not come soon enough to our little loved ones waiting at home. We can’t wait.
My friend, Melissa, whose son Case I’ve talked much about and is also in the IT trial, just wrote a great blog (with graphs!) of Case’s changes since beginning this new drug. It’s worth a read. Interesting and informative:
And seeing that we’re nearing the end of the year, it’s impossible not to reflect on our past year. One year ago, we didn’t know what our future held. We dreamt of saving Trey’s life and hoped that Trey would qualify for the intrathecal trial that would make our dream come true, but we had no idea if it would happen. We also held a star studded gala that raised double what any of our previous fundraisers had, so we were able to issue a request for MPS II Research Grant applications for $100,000. What an overwhelming and awesome year it’s been. To my family and friends and all the people I’ve met this year, thank you for helping make it the year that it was. I wish you all the best for 2012.
Love Deb


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