The following post was written about this time of year, seven years ago - I'm not sure why I did not post it then, however I don't think I could reiterate any better what past-Karen has written.
Gianni continues to bring happiness and joy to her family and friends. She continues to run the show.
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11/19/2011, 11:14 AM
Pacific Standard Time
The last time I made an official blog post was over two years ago - seems like yesterday. I've been planning on publishing this last posting for a long time, it just never seemed the right time... I could never motivate myself to sit down long enough to capture the floating anxieties into a coherent thought. Last week Tony and I took Gianni to her post-MRI follow up and were told that the Tumor Board had recommended to move us to yearly MRIs versus every 3 months. Our doctor and NP had been slowly creeping up the time between MRIs (every 3 months to 4 months to 6 months) - and I have been more and more comfortable with the increased time between scans. The plan going forward is: an annual visit with NeuroOnc in 6 months, annual MRI in 12 months. This means they think Gianni has a very low probability of recurrence.
I am nothing short of stunned... and what an amazing thing to be thankful for. The reasons I've been reticent to update are complicated - I am so grateful for our blessings. Most children diagnosed with brain tumors don't survive, the few that do survive the tumor are plagued with the short and long term effects of the systemic, invasive treatments.
It's a small community we joined when Gianni was diagnosed and began treatment - the natural response is to reach out, find others who are sharing the nightmarish experience and find families with positive outcomes. In progressing through that journey, I've made many friends and connections with mothers and fathers of children - most of which are suffering the devastating loss to this horrific disease. Although we shared a similar journey of fear, disgusts, angst over the decisions that had to be made, and not being able to shoulder the suffering of your own child; we did not share the same journey at all, because for reasons which I may never understand, our daughter has, for now, been spared. These few words are the ones that have been so hard to write. Every time I even think it I "knock-on-wood", for I know children who have "earned their wings" - that is an easier way of saying, they died. They are no longer are here to hug and kiss their loved ones, play, laugh, run, share, grow and experience. The hole in the hearts and souls of their families is unimaginable. I often tried to imagine that feeling - part of coping is managing the expectation of, "what's the worse that could happen" and that exercise, and knowing that there is no certainty that I could survive "the worst that could happen" is what kept me going much of the time. But I know I am not unique, that my love for Gianni is not what spared her. A mother's love for her children is not measurable or comparable across individuals. The mothers who lost their sons and daughters loved, fought, prayed, wished every bit as hard as we have.
I'm leaving Gianni's blog up for that parent who has just received their child's diagnosis and is sitting in the hospital, desperately Googling the horrific search terms will eventually find this page [brain tumor, PNET, medulloblastoma, supratentorial primitive neuroectodermal tumor, (sPNT), childhood cancer, chemotherapy] and if they are patient with my ramblings they will also find some useful information, kinship through shared experiences, wisdom from good, bad and similar choices made, and a story.
