Posted on June 18, 2017
A glimmer of hope.
Hide's persistence has resulted in Lucas' acceptance into a relatively new treatment option in Mexico; the one we were turned down from recently. It seemed open to us several months ago, but during the 4 weeks Lucas spent participating in the Panobinostat drug trial, the Mexico option gained 'popularity' as patients we, in the DIPG research community, follow started reporting promising results from initial treatments there. 25+ families from various parts of the world are now being treated so space is limited and we essentially lost our spot in line. Thanks to Hide's (out-of-character) pushiness and the advocacy of fellow DIPG parents in Mexico (thank you!), the doctors reconsidered Lucas' case and finally gave us the go ahead to participate.
We will be heading to Monterrey, Mexico in early July for a week to have our 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.
Let me be clear, this is not a clinical trial but compassionate care therapy. It is not one that is recommended by our medical team at MSK. They have run out of scientifically proven treatments or well-controlled studies to offer Lucas apart from palliative (quality of life) care. The doctors in Mexico are up against the same dismal disease but their mindset is different. They say to parents, "We want to save your son." It's not a promise. It's a simple statement that conveys compassionate intent and instills cautious hope. While results have varied, understandably, kids who are being treated have generally shown positive signs of improvement. One boy who struggled to walk, like Lucas, was recently videotaped by his parents running and pushing his brother in the stroller for a change. What we wouldn't give to see Lucas walk or - dare we even dream it - run again...There are still many questions and controversies around the efficacy of this option but Hide and I have decided to take this leap of faith based on our research and the truly promising results from current patients there. When your back is to the wall and someone offers you a possible lifeline, no matter how fragile, you take it. With DIPG, there is no time to wait for full proof of concept. Whether the doctors in Mexico are getting closer to a cure or simply prolonging life remains uncertain, but we will take hope over no hope, nimbleness over proof, trying over waiting, action over inaction - any day. As Gerry Tye, a fellow DIPG parent and advocate says, "You have to make choices that are not in the normal medical sphere."
It was our hope that we would find this type of option stateside to manage 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, we will return to Monterrey every 3 weeks for additional therapy. While the financial burden is steep, we just can't let money stand in the way of Lucas' chance at life. He's worth the fight.
Many of you have supported us so generously to allow both Hide and I to stay home and care for Lucas, pay his medical bills and fund his voracious sushi habit - we already owe you a huge debt. Any donations that arrive for Lucas now will go directly towards his medical costs and travel expenses in Mexico. We are also open to all suggestions around fundraising ideas if you have them.
For PayPal users, please consider sending funds direct via "friends and family" for no additional fees to [email protected]
OR contribute through Lucas' YouCaring
campaign (just know that the site takes a percentage of all donations for processing).
Above all, we ask for your continued prayers and positive thoughts as we embark on this harrowing but hopeful journey to Mexico. We thank you for all the love, generosity and support you have shown our family and Lucas. During the worst time in our lives, we are blessed to see the very best in people.
For anyone who doesn't know about our facebook page, it is where we post regular updates on Lucas' condition. Please follow our journey here:
The Harashima Family
Hide, Sansan, Kai and Lucas