Alan's DIPG medical journey!
From myself Michel/Evelyn and the entire family.
Hola amigos/amigas y familia como muchos saben Mi sobrino Alan de 7 anos (el hijo mas joven de Midy y Ricardo) lo diagnosticaron con un tumor maligno en el cerebro llamado DIPG. Yo decidi empesar este go fund me para ayudar en el aspecto monitario que sera necesitado en este tiempo tan dificil. No hay muchos recursos o estudios en este tumor. Pero yo anticipo que Midy y Ricardo necesitaran ayuda para cualquier decision que tomen para Alan. Por favor ayudenos en lo que puedan. Todo vale hasta rezos. (perdonen no se escribir mucho en espanol)
De parte mia Evelyn/Michel y la familia entera.
Saturday his headache and neck pain came and went. When I told Dr Siller about the neck pain he was very concerned and told me to take him to see a neuro oncologist and request an MRI. We took him to Arnold Palmer and not only was he not seen by the neuro oncologist but over the phone without seeing Alan the on call neuro oncologist instructed the ER doctors to put him back on steroids. Alan had been off steroids for almost 2 weeks and we were very excited that he was going to start immunotherapy. We begged them to please let him get an MRI. It was not right blindly putting him on steroids without seeing what's going on inside his brain, but they refused saying his symptoms did not warrant an MRI. Dr Siller told me my hands were tied and I had no choice but to put him back on steroids. I was livid because I know they would not do the MRI because it hasn't been 6 months since his first one back in February and insurance would not cover it. But that's our healthcare system it's all about the money. They don't care about the people it's a business and it makes me furious . As a parent you feel so helpless. Alan has continued to complain about the headaches even after starting him on steroids again (a low dose). Today is Monday and Alan will travel to Monterrey tomorrow. He's doing ok this morning. I can't wait for him to go back to Monterrey he needs to be close to doctors that actually care. Please keep Alan in your prayers and that the MRI on Wednesday looks good just like the other ones. Please donate or at least share. If the doctor can get him off the steroids he may be able to get the immunotherapy which is very expensive. Thank you for your continued support and prayers without your generosity this very promising treatment would not be possible. (For PayPal information please contact us)
Since being diagnosed in February, the family has chosen an out of the country treatment for him. He is currently being treated in Monterey Nuevo León Mexico . He is having intra-arterial chemotherapy. After having just one treatment, a follow up MRI showed 50% shrinkage in tumor size (God is good)! Since then he had his second treatment and will have his follow up MRI and 3rd treatment at the end of April. Alan is in great spirits and we have noticed he is walking better and his eyes looks visibly better. We pray he continues to improve and we can continue to provide him with this very necessary treatment. The only problem we are concerned with is the cost of it. Each treatment cost approximately 8k or more and this does not include flights, stay, food or anything else. This cost is just his actual treatment. Also he is currently being weened off steroids that were initially prescribed. Once he is completely off of the steroids he will need to start immunotherapy which has a price of about 14k each and they anticipate he will need at least 3 sessions. Unfortunately since this treatment is only available out of the country there is no insurance coverage and everything is straight out of pocket. We thank everyone who has donated, these 2 first treatments would not have been possible without your support. We are humbled and deeply thankful forever. We will definitely need continued support and prayers. For pics and more frequent updates please follow #Alanstrong on Facebook.
Although I don't know you I hope things go well...headaches are bad enough for adults....hopefully the doctor can get something to help....hope your young man feels better soon