I just need to write it. Those words… to get it all out.
If you have googled or read my link then you know the average life span for a child after being diagnosed with DIPG is 9 months. On her birthday when we were first given the prognosis we were told 1.5-2 yrs. That was horrific enough.
Last week when she was inpatient we met with her oncology team again. We discussed her life and our lives and our plans. Of course there are exceptions…and we all hope our daughter will be one of those…but no way to know.
She is struggling. She is so tired. Her eye is getting worse and now her walking is being impacted. We are scared. Desperately scared.
I am surprised by my reactions at times and often ashamed by them. Bitter over Batkid. Longing for a bald child in chemo. And now hoping for 9 months.