Seth is doing extremely well. So well in fact that he has been having gate passes from hospital for a couple hours. This has done amazing things for him. He has more energy, he is happier, he is putting on weight and is doing so much better than we ever could have hoped for. He is still going out in a wheelchair as he is still weak. He had a wonderful time on the swings the other day and we had to ask him to get off so his sisters could have a turn. We walked through the Wisteria Gardens at Westmead (about 50m walk from the hospital) which are full of blossoms and so beautiful. It was a wonderful time spent as a whole family going out together. I didn't expect that to happen for quite some time. Seth wears a mask when outside and passing people. His eyes are very sensitive to sunlight and his skin is also sensitive to the sun. He will not be allowed in crowds for at least another 3-6 months. Luckily it is spring and summer is on it's way so we can do a lot of outdoor activities when he arrives home.
Last night he ate a bowl of cereal - which is a huge deal. His temperatures have dropped back to normal and they are talking about him leaving hospital as soon as next week. This is well ahead of when we thought he would be allowed out. We may have to stay at the unit at this time as they want to see him at least 3 times a week for around 3 weeks. We will play that by ear but he can at least come home for the weekends if this is the case.
The doctors did a CT of his head and chest to try and find out what was causing the dizziness and temperatures. He is on antibiotics for the temps so they don't want to say that the problem is fixed when it could be only covered by the antibiotics. The head scan was fine, the chest found some spots on his lungs. They believe it may be a fungal infection and the cause of the temps. Yesterday they put him to sleep and inserted a camera into his lungs and put some type of fluid in there to flush them out. The fluid has been sent away for testing. The doctors said his lungs look good. Not sure when we will get the results of the fluid test, but we are not expecting it to be anything serious.
As far as graft v host disease goes. It looks like the worst Seth is going to get is red ears, hands and feet. They have said that the higher the counts get, the more likely he will show signs. However, they said that the longer he goes not showing signs of the disease the more unlikely it is that he will get it. So, his counts are rising slowly, but no further signs of the disease. Wonderful, wonderful news as it is a nasty disease to get and could have damaged his major organs permanently or been fatal. It seems we have dodged that bullet - so far, so good. I questioned then whether we would have any graft v leukaemia (which means Sienna's cells will kill any cancer they find) and was told that this can still take place very effectively without the graft v host disease. They said they should see how this very important part of the transplant has worked in the first bone marrow aspiration he has, which should be around 2 months after transplant.
So so so happy to hear this Ali. Love you guys to bits. Katie, Cooper & Riley Sawell xo
ReplyDeleteGreat news hope it continues to go Seth's way xx Lal Tapp
ReplyDeleteThat is such wonderful news. He is an amazing little boy and you both are incredible parents. Love to you all and blessings for the coming weeks. Love Shell, Carly and Kaitlyn
ReplyDeleteGreat news, You have all been in our thoughts and prayers xx Peter MIchelle Boon and family xx
ReplyDeleteWow! that is awesome news!! So happy for all of you. Xx
ReplyDeleteFantastic news. Praying he will get better and better. Love Darren and Susan Tappouras
ReplyDeleteso so happy for you all, Yahweh is watching over you ever minute of the day and night, the power of prayer is wonderful, just wish I could huge you all, but i'll just have to be content with sending our love to you for now through this computer site.
ReplyDeletekeep you chin up and all the very best, with all our love and prayers
Rhonda Pogson & family
so courageous, all of you!
ReplyDeleteFabulous to hear some good news.
Wonderful news guys lotsa luv Nic n Ross
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