Tuesday, February 23, 2010


I never got around to putting the photos up, Sorry.

We have had a few big days. We said goodbye to Aunty Em on Saturday. It was great spending time together even under such awful circumstances. To make a positive from something negative, Emma and I have a stronger bond now and for that I am greatful. Erin and Adele were very emotional. They loved Aunty Em being here. Erin was visibly upset when Emma was leaving but Adele, the little tough nut held it together until the car drove off. She then howled. It was hard seeing them so upset but pleasing at the same time; Emma's trip did exactly what we wanted it too. Ethan was fine saying goodbye but he has been asking for her a lot since and he gets upset when I say she's in London. Apparently he hates London! I should have told him she was in New York because he's catching the boat there tomorrow!!!!

Ethan has still been getting bad headaches. It is very hard to control and he becomes quite agitated with them after a while. The lack of oxygen causing them is also leading to major confusion and irrational conversations. He then becomes more agitated because you don't understand him. He is also getting intermittent chest pain. The pump has been increased and I am guessing it will be increased again over the next couple of days as the pain is becoming a bigger issue.

I was talking to the girls tonight in detail about the disease progression and what and how things could happen. Erin said, "If we know he's going to die and he's in pain, why can't we drug him so it doesn't go on causing pain?" I then explained only vets can do that. She has strong views for a 9 year old.

The respite worker, Amy, who we met before Ethan deteriorated came on Monday night. She isn't qualified to give the medicines but Ethan formed an instant bond with her and had asked for her so it was organised. She watched 10 mins of about 10 movies with Ethan while I pottered around cleaning and getting tea cooked for the swimmers. It was good doing the things I normally do, but sad that housework could bring me joy!

The Childrens Palliative Care team are going to fund the air mattress and also a nurse to come out to the house a couple of nights a week so I can get out and be with the girls. I'm not too sure how long this will take to get up and running but we are looking forward to it.


Ems said...

awww it was so hard for me to leave! Wish I could have stayed longer to help you out Jo. Very hard for me to read that post but glad I had the opportunity to spend some time with you all.
Was a bloody long and sad journey back to London - miss you already and love you lots!
Aunty Em

Anonymous said...

May there still be more smiles and joy for you all to share.
Judi & Rob XX

Anonymous said...

Thanks for sharing all your thoughts I am in ore of your strenght and courage you are all amazing love to you all Sandra Broadbent