I am destroyed. My precious angel is dying.
She is only 10 years old, my goddaughter's darling little girl and she is as precious to me as if she were my own. Two days ago she was diagnosed with a horrible and invariably fatal brain cancer: Diffuse Intrinsic Pontine Glioma. She will probably die within 9 months. I am heartbroken and can't stop bawling and at times howling like a wounded animal when I am alone. I am praying for a miracle and hope you will too if you are the praying type, and even if you aren't I know DUers have compassionate hearts and we can count on many kind thoughts for healing. I keep saying that there was once a child who was the first ever to be cured of leukemia, and now just look at how many survive and go on to live normal, happy lives. So maybe she can be the first to walk away from DIPG. It is just probably a fluke of nature, a tiny random gene sequencing blip. I thought there was nobody to blame, but then I thought of this. DIPG (in 48 hours I have come to learn) is rare, with only 200 to 300 new cases in the U.S. per year, so no drug company will bother looking for a cure. Dedicated researchers are nonetheless doing all they can to study and defeat it. And then I thought of this....St. Jude's Hospital is exactly the kind of place that is in the forefront of this type of research, and Donald Fucking Trump skimmed nearly a million dollars off of donations that people made in good faith to Eric Fucking Trump's "Foundation," buying into the lie that there would be little or no overhead to the fundraisers because they were using "donated" family resources. This is not a new revelation, and I myself have previously posted at least two or three times condemning what they did, namely line their pockets and wallow in their obscene wealth at the expense of pediatric cancer patients. But today it's personal. That nearly-a-million dollars would have gone a long way to find the cure to the cursed disease that will kill my darling little angel, and those of so many others who are in the same abject misery as I am today at the prospect of such a devastating loss. Fuck you Donald Trump....give back the nearly-a-million dollars you stole from sick and dying children. Fuck you too, Franklin Graham, for knowingly accepting ill-gotten cash bribes from this polluted POS and then anointing him as "God's chosen."
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Only of sympathy and wishes for strength and courage, and for you to regain them when they abandon you.
You are right to hope for a miracle, and I hope, too.
surrounded by love.
The team hopes to open a Phase I clinical trial at Lurie Children's by the end of 2017. "Our research moved from the bedside to the lab and back to the bedside," said co-author Amanda Saratsis, MD, pediatric neurosurgeon at Lurie Children's and Assistant Professor at Northwestern University Feinberg School of Medicine. "We used biopsied tumor samples from DIPG patients to create models in the lab, which we studied and then used to test a novel, targeted approach to treating the tumor. Because of the unique multidisciplinary expertise of our team, in less than two years we were able to make an incredible basic science discovery that can be directly translated back to the clinic through an upcoming clinical trial of this new treatment approach for children with DIPG."
The team from Northwestern Medicine and Lurie Children's represents a unique collaboration of experts in molecular genetics, biochemistry, neurology, pediatric neurosurgery and pediatric neuro-oncology.
"At Lurie Children's we see many children with DIPG and they are a powerful inspiration to develop an effective treatment as quickly as possible," said co-author Rishi R. Lulla, MD, pediatric neuro-oncologist at Lurie Children's and Assistant Professor at Northwestern University Feinberg School of Medicine. "We are thrilled that we can offer our patients a novel clinical trial in the near future."
https://www.sciencedaily.com/releases/2017/03/170307141823.htm
They have made progress.
The collaborative environment at Northwestern made the discovery possible, Shilatifard said.
“This work could not have been done anywhere in the world except Northwestern Medicine, because of all the scientists and physicians who have been recruited here during the past five years and how they work together to link basic scientific research to the clinic,” Shilatifard said. “This discovery is the perfect example of how we take basic science discoveries and translate them to cure diseases at Northwestern Medicine.”
“To the best of our knowledge, this is the most effective molecule so far in treating this tumor,” said senior author Shilatifard.
http://news.feinberg.northwestern.edu/2017/02/molecule-stops-fatal-pediatric-brain-tumor/
this pain must be beyond anything in the universe. Bless her, you, and her entire family. Tears and prayers aren't even enough.
... and for your pain and heartache.
you have experienced in losing him.
and I hope we will hear more from you. Welcome!
I lost my husband to a rare, almost always fatal form of cancer. But he was an adult who had a great life. My heart aches for you. Keep the faith...miracles can happen. Just because our greed driven pharmaceutical industry won't research it, doesn't mean nobody is. You've got nothing to lose by trying alternative medicines, especially since the best we supposedly have to offer is less than a year.
It's hard. But when it's a child it is truly devastating. My thoughts and hopes are for a great medical breakthrough for your loved one, along with peace and strength for you and your family.
This year my son, who will be 43 this month, was diagnosed with an extremely rare cancer in its hereditary form, at State IVA. He is the "de novo" presentation, which means he is the first one in line to have it. My husband and I were both tested, as was his sister. He has three children, ages 2, 5, and 7 years old. The two year old and the seven year old inherited the gene, and they both need to have preventive thyroidectomies.
We have dealt with a massive surgery, radiation, and trying to keep my son's nutrition up. There is no effective chemotherapy. He is, however doing well overall. We pray that we caught it all in time.
The little ones will be going to specialists for their surgeries.
I am so very sorry for your goddaughter's precious little girl! By all means, contact St. Jude's. Also, explore clinical trials and off label drugs. Keep trying! And keep praying.
Will you share her first name? I'll put it on our altar. We're Buddhist - we'll chant for her
I grieve with you, dear friend. I am sending heartfelt vibes for an army of angels to help your little angel.
She no doubt is worthy of one. Stay strong, best wishes.
cyber hugs to you and yours...
There are no words. 
So sorry! What you are facing is unimaginably horrible. As hard as it is to read, living it must be the worst nightmare.
We must push as hard as we can to keep healthcare available and to seek better treatments.
So, so sorry
My heart goes out to you Tanuki, to your godchild and all you hold dear.
for all of you who love her so much...
I will pray for her. Miracles do happen.
Your post is beautifully written. All of my and my family's very best to you.
Word is that God loves music.
about his daughter's long battle with C.F. He used his gift as a writer to raise awareness and much-needed research funds for treating that horrible disease. I am glad that as tragic as Josh's death was, scientists were able to learn from his situation to save others even within your own extended family. Long live Larry!
i lost my daughter. i do not believe there is anything worse in life than to lose a child, it flies in the face of nature. be with her as much as you can and cherish each moment, cement them in your memory. Peace and Love to you and your family.
Sending you, your family and this precious little girl hugs and prayers.
Prayers for all involved.
For you and your family. This sorrow is beyond words...
I wish I had better words to say.
making children go through this really grinds my gears.
I will pray for you both.
