Cerezyme treatment #26, a milestone
Today was Hannah’s 26th Cerezyme treatment. Every two weeks for the past year, we have made the drive down to Texas Children’s Hospital’s Infusion Center. For 2-1/2 hours, Hannah is cuddled up against me (usually asleep) while she gets her life-prolonging enzyme replacement therapy treatment via an IV in her hand.
We have been lucky that she has not needed a surgical port placed yet. We, along with her doctors, have all agreed that a one-minute cry during the input of an IV far outweighs the risks of having to deal with an surgically placed infusion port inside her chest. The nurses at TCH have been able to master her IV placement, and it literally takes less than a minute to get it done. Even Dr. Schiffmann, her Gaucher specialist, was incredibly impressed by this feat.
Cerezyme treatment #1, February 9, 2009
In my heart, I truly believe the Cerezyme treatments have kept Hannah alive longer than if she had not had the treatment. I look back at how large her spleen and liver where when we started at 6 months old, and she would have probably suffocated because they were already shrinking her lung capacity by their size.
I know they say that Cerezyme does not cross the blood-brain barrier. But making her more comfortable by dealing with the other physical symptoms of type 1 Gaucher’s (bone pain, spleen and liver enlargement, etc) has made Hannah much more comfortable and happy.
Hannah is not in any pain. She does not live in pain. For that I am incredibly thankful.
One year of treatments down. A lifetime to go.
She has changed so much in one year! The only thing that hasn’t changed is her big happy smile. LMHannah is very lucky to have you for a mom, making that dedication every 2 weeks for her well being!
Congrats on the milestone!! She’s grown so much, u r doing a gr8 job!
what a difference a year makes! she is doing great!!!
You don’t need a port…I have been getting iv since age 7 and i am 27 now and I don’t have a port.
She is a trooper. 🙂
Little doll baby Hannah who is so BRAVE.
I am so happy to see and hear how the treatments have helped her and are helping her. She’s so beautiful and has such a sweet spirit even in her sleep. 🙂
.-= Petula´s last blog ..Hold the freakin’ presses! =-.
I have recently been notified of your guys story through a friend that lost thier child to Gaucher’s disease. It was a hard struggle for all of us and to watch my good friend of around 20 years lose his first born shortly after his second birthday was horrific!
Anyways the reason I wanted to write this is to let you know that him and his wife told me about the extraordinary measures quilt and you are the video I have voted on almost everyday since I found it. I am sure all the diseases on the quilt deserve attention and the money to find a cure, but I want you guys to win so that maybe Gaucher’s won’t be as lethal anymore. My friends haven’t decided about future kids but I know if there was a cure that they would have about six kids by now. The major thing I remember about Ethan’s (the child with Gaucher’s)treatment was that it wasn’t working like they had hoped and that was when they said it was a type 3 like they had never seen before. (They originally thought it was type 2) I really Little Miss Hannah has a better outcome than Ethan, and hopefully they can find something to atleast combat the disease more effectively.
She is a strong and amazing little girl!
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