Latest News / 09.07.2017
A New Hope
Lucas is starting his 4th of 6 planned treatments in Monterrey, Mexico. He and several children from around the world are receiving unique and groundbreaking treatments there - with results never seen before in the fight against DIPG. A multi-modal approach is the key difference; we have seen that established methods of one drug and one delivery mechanism just don't work. First, a cocktail of approved and established drugs are directly injected into the affected area of the brain via intra arterial chemotherapy. Second, he has just started immunotherapy treatment where his own immune system is being trained to recognize and attack the tumor.
We noticed some immediate improvements in Lucas after the first treatment including his ability to chew/swallow, clarity of speech, better balance while sitting, increased movement on the right side of his body and his eyes are less crossed. Because Lucas' treatment in Mexico coincided with him tapering off steroids, the full benefits may be temporarily masked by the side-effects of the taper. He is more tired than usual and his appetite is extremely low. We have heard from other patients (who have weaned off steroids) that it usually takes several weeks or months for this to improve.
Before each procedure, the doctors take an MRI of his brain to monitor progress and we have been delighted to see slight shrinkage and reduced intensity of the tumor every time. With an aggressive and fast-growing tumor like DIPG, ANY movement in the opposite direction is meaningful and gives us hope.
After several visits, talking with the doctors and meeting many of the other families, we feel very confident the treatment in Mexico is the best thing we could have done for Lucas. We, and all the other families currently being treated, have seen destruction of tumor cells and - equally important - stronger and happier kids.
These treatments are out-of-country and therefore not covered by insurance. The cost of each treatment is prohibitive at around $17,000 for intra arterial and $15,000 for immunotherapy - every 3 weeks! It is unclear how many treatments Lucas will need but the plan is to extend the time between treatments once the tumor shrinks to a "manageable size."
Lucas has just started 1st grade and is so excited to be back at school with his friends, like a "normal kid," instead of just being shuttled between doctor appointments. We continue to have hope and we thank you for your support in our journey to give Lucas a fighting chance at life.
The Harashima Family
Help us Find a Cure
DIPG (Diffuse Intrinsic Pontine Glioma) is a devastating childhood disease in desperate need of a cure. The journey ahead is unknown, but with love, energy and hope we can all be a part of the fight.
Show Your #Love4Lucas with Merchandise
#LOVE4LUCAS Merchandise is now available for purchase! Our friends (and former neighbors in Dumbo), Katie & Brandon Connovitz, are the co-owners of twelveNYC, a brilliant product development company for beauty packaging, private label, and promotional merchandise; they work with several world-class fashion and lifestyle brands. When the idea came up for merchandise, we knew exactly who could help us source the softest tees and perfectly broken-in hats. Before we could object, they proceeded to design, create and donate all the merchandise to our cause! Therefore, every penny of the sale proceeds will go towards funding Lucas' pioneering treatments in Mexico. Thank you again, Katie & Brandon - you are as generous as you are talented.