Today we visited Boston Children’s Hospital for a neurosurgeon ‘s opinion on possible surgeries to improve Josephine’s current tremors in the right arm. These tremors are triggered when she tries to use her right arm. She is unable to write or draw, activities she misses dearly. Her communication is also an issue as she has not been able to regain control of the muscles in the right half of her face. Her smile was taken away back in July but she still giggles at our silly jokes. She is always in good spirit.
Choking on food or liquid is a daily struggle. We follow a soft diet with thickened liquids like smoothies and yogurts. This has been her baseline since August.
We are happy that she is still with us as the secondary tumors in the ventricles seem to be under control. The neurosurgeon at Boston Children Hospital compared the MRIs from September and October and confirmed the improvement. She said, “Whatever they are doing in Mexico seems to be working.” This is important for all of us to know. Cancer spreading into the ventricles usually take lives in a matter of four to six weeks....very quickly...we were able to stop this collateral spreading.
Unfortunately the main tumor in the stem is still there, reachable only by the intra arterial chemotherapy that Josephine receives in Monterrey Mexico, the only treatment available at this time.....
I am hoping that our government revises their funding allocation for pediatric cancer. Most people who donate privately to organizations like “The Cancer Treatment of America” and others like it, are unaware that they do not help children. I called them a few times and always reminded me that “they do not work with children...!” Others donate to Saint Jude for pediatric cancer and the truth is that I hear families with DIPG children are being turned down....they just can’t help the most devastating pediatric cancer, they are just a free hotel for palliative care.
The biggest help needs to come from our government. They have the power to prioritize and help the smallest but most precious segment of our population...our children.