Thank you so much for updating with this blog! I think about you all every day and worry about Sam a lot so it is really nice to be able to know what is going on and how he is doing! I am glad to hear that he is doing well at the moment and I hope that continues! I really can't imagine how you and Alyson feel and my heart just breaks for you. I think about Sam a lot when I look at Miles and I often start crying just thinking about how you guys must feel. Lots of love and prayers are being sent your way!!
I have been reading up on HLH as much as I can and I wondered if you had read the blog about Zoe. Zoe's father wrote a journal about their journey with their 2 month old daughter who was diagnosed with HLH. As it is so rare, there is not a lot written about it so he wrote the blog that he wished he had been able to read when Zoe was first diagnosed. It took me several hours to get through it all but it really helped me to understand how the treatment works and some of the things that you and Sam might expect to deal with in the future. Here is the link to the first post: .
Thank you so much for updating with this blog! I think about you all every day and worry about Sam a lot so it is really nice to be able to know what is going on and how he is doing! I am glad to hear that he is doing well at the moment and I hope that continues! I really can't imagine how you and Alyson feel and my heart just breaks for you. I think about Sam a lot when I look at Miles and I often start crying just thinking about how you guys must feel. Lots of love and prayers are being sent your way!!
ReplyDeleteI have been reading up on HLH as much as I can and I wondered if you had read the blog about Zoe. Zoe's father wrote a journal about their journey with their 2 month old daughter who was diagnosed with HLH. As it is so rare, there is not a lot written about it so he wrote the blog that he wished he had been able to read when Zoe was first diagnosed. It took me several hours to get through it all but it really helped me to understand how the treatment works and some of the things that you and Sam might expect to deal with in the future. Here is the link to the first post: .
The link didn't post for some reason... http://hlhjournal.com/2010/03/11/diagnosis/
ReplyDeleteThanks for sharing the photos, Michael.
ReplyDelete