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Wednesday - 2 days after infusion

25/8/2011

7 Comments

 
A huge milestone in my life.  I've hoped and wished and prayed for "my first infusion day" for so long.  I was never certain that I would get it, hopeful yes, but never certain. 

Infusion morning was filled up with testing.  This time it included a skin biopsy and an MRI.  I went to sleep during the MRI!  After lunch the enzyme was mixed and ready to go.  It was 250mls that took around 2 and a half hours to administer.  Apart from the needle insertion the rest is painless.  Blood tests were taken often during the infusion and for the 24 hour period following the end of the infusion then I was allowed "home".

One of the wonderful things about being here in Florida is that people know what to do with Pompe peeps!  There is a bunch of us here in various stages of the disease, most of us taking part in various studies which hopefully will culminate in a cure one day :)  We can hope right?

It's really amazing to finally meet the people I have been talking with on the internet for so long.  It feels like I know them already before I even meet them.  They're all wonderful strong people and have a great sense of humour.  I guess you have to when dealing with this type of thing, otherwise you could sink very quickly.

Interesting fact:  Masterton (where I live) has a population of around 20,000 people.  The amount of students at the University of Florida, 50,000! 

The other night after our story aired on TV in New Zealand, we had many donations to help with costs while I am away.  And, amazingly, someone has offered to pay for Steve and the boys to come to Florida for the holidays, flights and accommodation paid for.  The person wants to remain anonymous.  I cannot even begin to thank people for the amount of support and generosity.  "Thank you" just never seems enough.  I promise though to "pay it forward".
7 Comments
Sabrina Low-DuMond
24/8/2011 10:00:36 pm

Allison...I am so happy for you that this is actually happening. You've waited so long and have been such a strong advocate and voice for the community. The kindness of strangers is so heartwarming and I love hearing about random acts of kindness and generosity. Looking forward to hearing more about your treatments and I can't wait to meet you in person in San Antonio!!! take care my friend...sabrina

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Mike Stanzione
24/8/2011 10:02:18 pm

Allyson, I'm glad things are working out for you. And God Bless the person funding your family's trip to Florida, that is fantastic news!!!

Reply
Brad Crittenden link
25/8/2011 01:56:17 am

How could you pack so much good news into one article?! That's awesome! Things are all falling into place. It's amazing how people step up when you really need them. So cool. I hope the NZ Govt is embarrassed to the core and they try to salvage what little political face they have left and also step up and do what's right. It's important to not lose sight of the goal of everyone in NZ being treated and not having to go through what Allyson and her family are... Brad

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Tanya Brougham
25/8/2011 04:51:02 am

After reading about how some lovely person is paying for Steve & your boys to be with you in the holidays, that definately broke the "tear seal". Wow I so amazing, also so great to know your doing good over there too. Much love to you Allyson & to the wonderful people there with you!

Reply
Louise Clarkson
27/8/2011 08:20:13 am

Hello Allyson,
Finally found you !
will read every day to keep up with progress.
Love and beat wishes,
Louise

Reply
Jen Betham-Lang
28/8/2011 01:25:07 am

Allyson, I am so touched by not only your courage, but also by the impact you have made on the wider community. I have spoken to Steve and feel at a loss to express my best wishes and hope for both you and your fellow Pompe sufferers. I am praying that this treatment delivers the best possible outcome. 'Am excited to hear about the prospect of your family being together for the holidays, as well. The separation can be tough, as we Navy families all know too well.

Blessings, best wishes and lots of love from all of us back home. We are cheering you on, and you are not alone!

-Chaplain Jen Betham-Lang, RNZN
Trentham Camp

Reply
Dayle Hunter
3/9/2011 09:10:59 am

Hi Allyson,

I am so glad to hear that your hubby and boys will be able to join you in Florida for the holidays and that your treatment is going well. Your story is heartbreaking but I can see you are one tough mamma! I hope that there is a follow up on tv soon about your treatment because what the NZ government has put you through is appalling and I am sure with continued pressure they will change their stance!


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