I recently started thinking about other families in the same situation as us, so I began looking on the Internet for infants affected by Glioblastoma Multiforme. The infant GBM is quite rare so there is not a lot of documented cases available and it can be hard to find the infant cases within the mass of cases in older population. It took a while but by finding blogs that mentioned other blogs and some rare online article I have managed to find 6 other infants that had been diagnosed with GBM. I have been able to get in touch with most of the families and received encouragement from their stories. The children's age range from more than 4 years old to just 7 months, and it looks like the bleak outlook we where initially given might not have been the only truth when some of them has been cancer free so long now that they are considered cured!
With Lily coming up on 2 years since the tumor was removed and still no relapse, we hope and pray that she will join the growing number of children that beat this sickness.
Our daughter Lily was diagnosed with a rare brain tumor at 4 months of age, this is a blog about her and our journey since then.
Tuesday, May 24, 2011
Wednesday, May 18, 2011
New old pictures
I went through some earlier pictures of Lily and added some to the posts.
The pictures from the hospital still stirs a lot of emotions. Seeing such a innocent child being in a vulnerable situation still hits hard even after 2 years.
But then I see Lily and realize what an long way she has come and everything feels a lot better. We still have a long way to go, but we are so blessed to have her in our life.
The pictures from the hospital still stirs a lot of emotions. Seeing such a innocent child being in a vulnerable situation still hits hard even after 2 years.
But then I see Lily and realize what an long way she has come and everything feels a lot better. We still have a long way to go, but we are so blessed to have her in our life.
Wednesday, May 11, 2011
A "normal" life
After almost a year off chemotherapy, things have been settling in to a more normal routine. If you can consider two session of OT, two sessions of PT and two sessions of speech therapy every week, MRI and oncology visits every 3 months, neurology every 6 months besides the normal pedriatic doctors visit and the extra visits to catch up on the immuninzations that was missed during the chemotherapy. This is still a lot easier than the strain of chemotherapy and all the possible complications that you have to consider during that time.
Tuesday, May 10, 2011
Recreated
I have finally recreated a blog based on the e-mail updates that my wife sent out to keep people posted on Lily's progress during her fight with the glioblastoma multiforme (GBM) that she was diagnosed with at 4 month of age.
The postings are more or less directly copied from these e-mail, so Gennie should have all the credit for the content in this blog.
The postings are more or less directly copied from these e-mail, so Gennie should have all the credit for the content in this blog.
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