kimmy watters's Page

I meant HOT WAX treatment.

Hi Kimmy,

Simon is aware of certain things, but we have always emphasized that each person is unique and how DMD can present differently in each. We tell him that we just don't know what the future holds, but that we will just deal with whatever comes up, that we will love and support him no matter what. We point out the difference between being on steroids and not, and the possible side effects, weighing the pros and cons of possible treatments, different research areas. For instance we explained that his muscle biopsy that was done as part of his diagnosis showed that he had a high level of utrophin, but the doctor was not sure why or what that would mean. He thought perhaps a milder case of Duchenne than a boy with out the high utrophin. That doctor, Dr. Karpati, has since died, but his research into utrophin is still going on. We talk about wheelchairs and mobility devices that help people get around, that it's normal for these folks to want to participate in life and work just like anyone else, and should be allowed to do so. He knows that sometimes these are temporary devices, and for some they are permanent necessities. We discuss many different different disabilities and degrees of ability. He is very aware of such things and rather compassionate.

We should envy kids in that they just live in the moment, not worrying too much about the future.

My husband and I just rented a cottage on a quiet lake for a week in August. That is after my husband takes the boys to Scout camp for a week (I might have to go too as a helper). So the boys can swim, fish and explore the woods, pick berries and roast marshmallows, while mom and dad can relax on the beach, read, go for walks and snuggle by the bonfire or gaze at the stars. With our luck it will rain every day!!!  And I want to take them to a farmer's market to get some fresh fruits and veggies.

I bet that hot was treatment on your hands feels good. Do you have pain with your joint condition?

Keep at it Kimmy!

A.

Hi Kimmy - yes, I will be in Seattle for the race this year and I look forward to meeting you! Thank you so much for running as part of our team!

Thank you for your kind encouraging words.  Sarah

Kimmy,

AVI is one company that is researching and developing Exon skipping drugs. Simon gets his with another company called Prosensa/GSK. AVI is a small company and seems to be having trouble to raise the money it will take to get their drugs to market, and/or having internal managment problems. There have been discussions here about how in previous trials they promised the boys who participated and sacrificed in the trials that they could continue getting the drug, but then would not continue giving it to them. That really sucks, and has stirred some bad feelings. Some say that the AVI drug is better (less toxic) because the boys don't have skin reactions and don't pass protein in their urine like they do with the Prosensa drug. Prosensa joined with the big drug company Glaxo Smith Kline, and were able to advance with their trials slightly ahead of AVI, and so far are keeping their promises with the extension studies where they keep giving the drug to the boys because the drug seems to have a beneficial result. 

But exon skipping is not a cure, and it does not work on some of the boys. It just seems to be the first treatment they have come up with, but a lot more research and trials need to be done, and all that takes time and $, and as you know we just don't have the luxury of time with our boys, and no orchard of money trees.

Kimmy,

Mmmmm...Crab cakes! I am not familiar with the salad you mention, what is in that? (sounds delicious)

The chemo my father-in-law takes will not shrink the tumor, just stop it from growing so fast, because it blocks a lymph duct, so the fluid cannot drain, and he gets swollen then,  and it caused a huge blood clot in a vein too. But he is in good spirits again, but really tired.

I'm off work and taking courses, but it\s hard to be a student again! The old brain is lazy!

That's great that you are getting stronger all the time, keep it up, but don't over do it!

Hugs to you and your mom Kimmy,

Andrea

Hi Kimmy,

Hope you had a nice Easter. The boys still like to have an Easter egg hunt (even I don't mind finding those little chocolates weeks after while I am house cleaning!) 

And I made a ham and we took it over to my in-laws for a good meal.My father-in-law is at home and the swelling has gone down enough in his legs that he can get around quite well with just a cane, no more walker necessary. But he is very tired all the time, which is understandable. He can only take a mild chemo by pill, the intervenous chemo gave him a bad reaction.

The boys are doing great and excited because it is spring.I am busy with some courses and running to medical appointments.

I think your birthday is coming up soon, when is it exactly? My father is April 16th, and my grandfather's was the 7th. Now I have a grand-nephew born yesterday, and his name is Gavin. His big sister Hadley (3) has a real life doll to love. He was almost born premature 2 months early when my niece went into labor in Feb, but the doctors were able to stop it until the due date.

Take care Kimmy,

Andrea

Hey Kimmy,

Glad you are back, but sorry to hear about your Mom, but she is a tuffy like you!

Have fun shopping for your new body!

Andrea

8 down and only 40 more to go! (which really means 80 needles, because he has 2 each time) Had the muscle biopsy yesterday (he was the first one to have it). Went really well and fast, and his frozen muscle has been sent off to Holland for testing at Prosensa/GSK. Just a bit sore, but I kept him home from school today so he wouldn't get a kick by accident or fall and bang his shin where the incision is. Back to school tomorrow, and he has a 24 hour urine to collect on top of it.

Yes, he loves the Peter Pan story, but is slightly scared of the whole missing hand in the crocodile part. There is a Peter Pan ride at Disney that is fantastic that he loved. He was only 6 1/2 when we went (right after the diagnosis), so we should try to get back soon.

And in answer to an earlier question, Yes, we have Slim Fast in Canada.

Talk to ya soon Kimmy,

A.