Kiwi and Charlotte’s battle with sPNET

Good evening to you all

Chiane is doing very, very well and she is currently recovering from Radiotherapy.

I am not going to talk about Chiane tonight. Please bear with me and read this email.

I want to talk about other children that have sPNET. It is a very, very rare brain cancer and we are only a few families world wide fighting this battle. We get in contact every so often and we support each other, share information, motivate each other and we become a bigger family fighting this together, not feeling alone. Each of us hoping that the others child will break through and win the battle. All hoping, praying and showing interest towards each other.

The last 24 hours was an unbelievable emotional journey for us.

The first child I want to talk about is Kiwi. We found out yesterday that Kiwi passed away. She had sPNET just like Chiane and she lost her battle. She passed away a few days ago. Kiwi was born in Hawaii and she was such a beautiful little girl.

PLEASE JUST TAKE A MOMENT AND CLICK ON HER WEBSITE BELOW.
This is her website:
http://www.followkiwi.org/

Her parents wrote some beautiful words of memory to honour her:
http://www.followkiwi.org/kiwis-blog.html

Our hearts are bleeding for them as we are all fighting this together and we feel their pain. Kiwi lost her battle in the flesh, but spiritually she has won. We were very very sad and emotional to learn she passed away….

The second child I want to talk about is Charlotte, another beautiful little girl. Charlotte was diagnosed with sPNET in April 2010. She is from Canada. I called Charlotte’s mom tonight (Allison) as Charlotte is coming to the end of her cancer journey. Charlotte is coming to the end of her journey and they are at home managing the pain with morphine. They are making the best of each day. The conversation I had with Allison was very emotional, because you know as a parent what they have been fighting, how hard a journey it is and emotions were very raw when we spoke to them. They are managing the pain as best as possible and Charlotte is in a lot of pain. Please pray for this family, as it is very, very hard on them at the moment. This is Charlotte’s website.

PLEASE TAKE A MONENT AND VIEW HER WEBSITE PLEASE.
http://robandallisonamsing.blogspot.com/

One thing is for certain; this rare brain cancer called sPNET is a force to be reckoned with. If your child gets it, it’s over very very quickly. Only a handful of children worldwide get it, and very very very few come through it the other side.

We are on our knees praying for these 2 families!

We are extremely motivated to find the funding to take Chiane to Texas. She really needs this treatment at the Burzynski clinic.

It feels like we lost one of our own children and about to lose another, as we are all so close fighting sPNET. It is heartbreaking! It is very quiet in our house tonight. We will fight this cancer with everything we got!

Chris

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Posted on November 28, 2011, in News from Chris. Bookmark the permalink. Leave a comment.

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