Friends: A boy in our community could use your help. A time like this we all come together and fight-We fight the good fight now for Lucas! There has been a recent breakthrough and we need to move quickly so our little buddy can get the treatments he needs in Mexico
We will be updating the site and facebook often-
Thanks in advance for your support!
Please read below:
On September 17th, 2016, Lucas Harashima (age 6) was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma). DIPG is a terminal cancer residing in the brainstem with no known causes or cures.
DIPG brain stem tumors affect the cranial nerves of children, ages 3 – 16 years old, destroying the nerves that supply the muscles of the eye and face, and muscles involved in swallowing. Symptoms include double vision, inability to close the eyelids completely, "drooping" on one side of the face, and difficulty chewing and swallowing. The tumor also affects the "long tracks" of the brain, with resultant weakness of the arms or legs and difficulty with speech and walking. As the tumor grows, children initially lose their ability to use their limbs. Thereafter, they sequentially lose their ability to swallow and breathe. Notwithstanding their physical deterioration, the children maintain their mental faculties and are fully cognizant of what is happening to them.
Doctors at Memorial Sloan Kettering Cancer Center have informed Lucas' family that radiation treatments are the best they can do to keep Lucas comfortable for his remaining time. They've done this twice, and Lucas felt much better and looking so cheerful post-radiation, but knew this wouldn't last. He also has been through a few surgeries to relieve the pressure in his brain. Over time, the tumor has grown back and has impacted many of Lucas' bodily functions - his swallowing, hearing, eyesight, and walking. We just simply cannot let him go without a fight.
We will not give up.
When they first learned about Lucas' diagnosis, doctors advised them not to "google" too much. "There is a lot of misinformation out there," they said. And a lot of frightening photos showing the potential effects of the disease, they didn't say. They didn't listen. They've been googling, facebook'ing, calling doctors, sending scans and turning to clinical trials to see if any breakthrough treatments exist. In their quest to find the best next steps for Lucas, they've spoken to 60 doctors around the world, sent requests for dozens of clinical trials, experimental procedures, off-label drugs, compassionate use drug requests (single patient IND), and begged for additional data yet to be published in medical journals -- just to find a glimmer of hope. Lucas was accepted in a trial for a drug called Panobinostat.
But the drugs have not been enough to stop the tumor. Cognitively he is aware but cannot control his body, so he gets frustrated. His speech and hearing are affected. His right arm and leg, which he still cannot control is hurting him and keeping him awake at night. And he is not able to chew or swallow as well. Seeing a 6 year old like this breaks our hearts, especially given his love for food. This is what DIPG does. It robs children of their movements, hearing, seeing, swallowing, and breathing -- their independence, their lives, and eventually their families' hearts.
Lucas has been accepted into a relatively new treatment option in Mexico. The DIPG research community has started reporting promising results from initial treatments there. 25+ families from various parts of the world are now being treated. The family will be heading to Monterrey, Mexico in early July for a week to have their consultation with the doctors and, if all goes well, initiate Lucas' first treatment. Each child is treated as an individual and prescribed unique drug "cocktails" and delivery methods accordingly, but it's likely that Lucas will undergo some combination of immunotherapy, intra-arterial and chemotherapy as part of his treatment plan.
It was their hope that we would find this type of option stateside to manage both convenience and cost. Because this treatment is in Mexico, US health insurance will not cover the hefty medical expenses. The out-of-pocket estimate for each intra-arterial treatment is $17,000 and immunotherapy is $15,000. It's impossible to predict how many treatments he will need but if he is showing continued signs of improvement after the initial course, they will return to Monterrey every 3 weeks for additional therapy. While the financial burden is steep, we could never let money stand in the way of Lucas' chance at life. He is worth the fight.
They are fundraising to focus now solely on Lucas, and that any donations that arrive for him will go directly to the medical costs for him in Mexico.
The first visit is funded. However, they will need to raise funding for four subsequent visits to complete the chemotherapy and immunotherapy treatments. They will need approx $36k for each visit.
Many have already given generously to support their decision to stay home and care for Lucas. Please know that they have no expectations but your ongoing love and support. However, if you or anyone you know would like to support Lucas' ongoing treatments and upcoming options and help him crush cancer, please do so here.
- Masumi Yoneyama
- Ben Bisordi
- Sayuri Goto
- Anne Benefico
- Tess Mulleady
Organizer and beneficiary
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