Max Wilford, our four-and-a-half-year-old son, was diagnosed with a brain tumor on August 5th, 2011. He was immediately rushed to the regional children's hospital and operated on the next morning. The tumor was found to be adhered to the brain stem and was only partially resected. Max is expected to endure at least a year if chemotherapy as he fights the tumor that remains. Max is a bright, beautiful, vivacious kid who, with the development of special superpowers designed to fight cancer, is now known as SuperMax. In addition to chemo, Max sees various additional therapists -- Chinese medicine, occupational karate, and soon swimming, a holistic chiropractor, and counseling. We will beat this!
We've created this Human Tribe Project website to keep friends and family updated about our little soldier, Mr. Max.
We don't know that we can ever fully express what the prayers, positive energies, uplifting thoughts, and beautiful messages have done for Max and our family. We started from a place dominated by raw emotions -- confusion, despair, and anguish -- mediated only by the strength we could muster with the support from all of you. We now inhabit a truly hopeful place where we envision a full recovery for our little man. We will continue to take some steps forward, and maybe a few back, but we're confident that we'll fight this and win.
The Story: Max had been experiencing some balance issues for about two months. It appeared as if he went though a large growth spurt (which he did), and didn't know how to handle his center of gravity. Over the past month (July 2011) especially that imbalance transformed to a fear of using stairs, playground equipment, and the like. Over the past two weeks (late July 2011) Max had "episodes" of profound imbalance. We took him to see his pediatrician just over a week ago, and a few tests were ordered. we were referred to a few specialists (eye, ears, nose and throat). Before the referrals came in, Max fell off of his bunk bed ladder and couldn't get up. We called our doctor immediately and he ordered an MRI for the next morning which, due to anesthesia, was the earliest we could get him in.
Friday, August 5th I took Max to Mission Hospital for an MRI to be conducted under anesthesia. Max was a trooper and handled the IV incredibly well. I was nervous, but we planned a date for after the MRI and was looking forward to taking him to lunch and a movie. After almost 1.5 hours in the waiting room the doctor (anesthesiologist) asked me to come back to see Max and said he needed to discuss something with me. He sat me down and told me that Max has water on his brain and he wasn't able to provide more detail but we needed to transport him immediately to CHOC in Orange. Barely composed, I went to see my baby who was coming out of anesthesia. It was a whirlwind from there. Max's pediatrician called me and delivered the news that Max has a brain tumor - my heart sunk. He said that he ordered the transport and already spoke with an incredible neurosurgeon at CHOC, Dr. Loudon. I was told that Dr. Loudon would consult us at CHOC and imminent surgery is likely.
Max and I rode in the ambulance to CHOC. Can you imagine? I hardly can, and I did it. Justin was teaching in LA that day and he left immediately to meet me, as did my sister-in-law. Our dear friends in Los Angeles had Maesie for the day anyway, so they just kept her. Max and I arrive at CHOC and make our way to room 616 in the Pediatric Intensive Care Unit. He's immediately greeted by beautiful nurses with toys and books -- any little boy's dream. Justin, Joe and Bethany arrive and we do everything possible to stay composed for Max. We're told that surgery is scheduled for early the next morning. We're nervous, distraught, shocked and kicking ourselves for every time we ever put Max in time out. If we knew that he had a brain tumor would we have been hard on him? The other side of the coin is that everyone is blown away by how polite he is (smile). We put the guilt in a box, and hopefully we'll have the chance to toss it at some point.
In the evening we consult with Dr. Loudon. He's hopeful that the tumor is on the cerebellum and is the type that will just fall or easily "peel" off. He has a PhD in tumor biology specifically so he knows what's up. The main danger is the water pressure in Max's head, because the tumor is completely blocking his natural drainage points. This is life threatening.
Saturday, August 6th Max is transported to the OR at 6:00am. We're told that the surgery will last approximately three hours. We see the doctors, consult with everyone, see him go back and, holding on to his blankie and Sheriff Woody doll, begin to wait. We crumble -- cannot retain any composure. This is the first time we're fully away from Max and able to selfishly let it out. We wait too long, maybe an hour more than expected. Dr. Loudon emerges to consult us after 11:00am. He's visibly frustrated. The tumor was very large and fused to the brain stem (not cerebellum) over a large surface area. The brain stem is too significant and "unforgiving" and therefore demands caution. He couldn't remove all of the tumor and doesn't know how much he actually got. He is however hopeful that the tumor is a pilocytic astrocytoma, grade I which is usually benign and non-invasive yet, on the brain stem can severely compromise essential bodily processes. It's more involved than this, but there's not much space here to go into it. An MRI is scheduled for Sunday to see what's left of the tumor. Max is fully sedated and left on a breathing tube because of the possibility of surgery after the MRI Sunday morning. The tumor is sent to the Mayo Clinic for pathology testing. It's so hard to see your baby on a ventilator, completely sedated. He has a tube running out of his head draining fluid.
After surgery, Max is returned to the PICU. We're eager for the MRI. We know we need to ask questions, but are too distraught to think. We rest with Max and eventually start to look on the internet for questions to ask. Friends with medical experience write in with excellent additions (thanks, Jonah).
Sunday morning, August 7th, an anesthesiologist is called in and the MRI is performed. By Sunday night we receive word that Max's brain is healthy. He's recovering from surgery without complications, so far. Best of all, the brain stem appears to be healthy and defined. The tumor hasn't taken it over -- all great news in context. The breathing tube is removed in the afternoon and Max is awoken. He's active, agitated, and monitored closely, but starts to speak.
Monday, August 8th, Dr. Loudon stops in and tells us that we couldn't ask for better. I respond that Max looks good and he tells me "no, Max looks GREAT." We're elated. Then, later in the morning Max's tube that drains fluid from his brain leaks and fluid spills from his head onto his pillow. A mini procedure is conducted in his bed. One step forward and another small step back. Nothing is guaranteed. We see many doctors, including the oncology team. Max will likely need chemotherapy regardless of the pathology report. How aggressive we are will depend on the report, but the tumor has be eradicated and chemo is what can get at it at the cellular level. We're also committed to a variety of other therapies and radical dietary changes, but need the pathology report to start to develop that plan of action. One step at a time.
As of the beginning of October Max is part way through his first round of chemotherapy. He has ten weeks in this initial round, then an MRI and a two week break. We're doing everything possible to uncover the most therapeutic complementary therapies and enhance Max's recovery with a robust anti-cancer diet. There's not much information out there for people in our situation and we're hoping someday to be in the position to help others going through this.
Thank your for supporting us and sharing your love with Max.
With love and appreciation, Audra, Justin, SuperM&M