[samour]

Hi all,

Sarah has had her second last chemo Jan. 9th. As of the last couple of weeks her balance is so bad. She fell twice yesterday, and down the stairs this morning. She was on 20 mg of prednisone, so they moved her up to 30, then up to 40 this week and to followed Feb. 9th and for cyclo. I would have thought she would have been so much better. She speech is still good, but her memory is much the same. She had hoped to go to school grade 12 and take 2 classes and be home in the afternoon to rest. We got a call from Sick Kids and they left a message on our machine that she has a appointment in March with a neuropsychologist
we were unaware that this was going to be made?

On the positive side we got a kitten for Sarah a ragdoll muchkin who is a doll and a great distraction for her.

Sharon

Sarah 17 has CNS lupus (brain), with massive clott to the sagital sinus, and they tested for APS and it was negative 3 times. SLE, her joints are worse now as well with increased headaches.

 

[LolaLola]

Dear Sharon,
I am sorry things are not better for you both. The kitten sounds like a splendid idea though, have lots of lovely cuddles.
x Lola

 

[Sage Hen]

(( Sharon))

I think the kitten is a wonderful idea. Ragdolls, are espeically cuddley too. Sarah will enjoy it very much.

I am sorry Sarah's balance is so poor. I hope she didn't hurt herself terribly..during the fall. How frightening for both of you...

I will being thinking of you both..Thanks, for letting us know how Sarah is doing.

Best Wishes,
Sandy

 

[samour]

Thanks for the support,

I found out yesterday, that the appointment is March for the neuopyscologist is a whole day affair. This specialty works with pt. that have suffered a brain injury. I was surprised it was a whole day appointment.

One thing positive at least they are working to discover how they can help Sarah.

 

[Joandublin]

Hi Sharon

Im sorry to hear about Sarahs balance issues. It must be so worrying for you and her. The neuropsychology tests are very comprehensive but crucially important to understand what parts of the brain are being affected.

A full day sounds like a huge ordeal and Sarah will be exhausted by the end of it all. But the good thing is that everyone should have a clearer understanding of whats going on.

In the meantime please tell Sarah to be safe - especially on the stairs. A fall down the stairs can be very dangerous. Its probably best that someone accompanies her up and down the stairs for the moment.

The best of luck and do keep us informed

Luv n stuff
Joan:rose: