Thumbs up!

A visual update: Auggie is doing well and working his way through his monthly treatments. We are hoping we only have the remaining 2 treatments left (mandatory 6 months of treatment after relapse).

On the Road Again

As we've come through a long and arduous month of treatment, there are a few things we were reminded of in going through this process yet again. I thought it would help to share, because ultimately, it's why Comfort Food exists.

Never take NO for an answer. If the insurance company refuses to cover costs, explore other options, get creative, don't be afraid to throw your hat in the ring when it comes to foundations, funds or endowments, and most importantly, ask for help.

Trust your instincts. That little voice in your head is always speaking for a reason. Trust it and follow it. Whether you are the patient or the care provider, you should digest, chew, process and evaluate your gut reaction when information is shared with you. Investigate and use that little voice to form your list of questions, and to solidify which direction you need to proceed. And, if in doubt, ask for help.

Keep your door open. Throughout the treatment journey, always keep your door open...I mean this literally and figuratively. When friends come by, invite them in (regardless of the state of your house!) because you never know when you'll need that shoulder to lean or cry upon. And if they are on your doorstep, it's because they are ready to be that shoulder. Keep communications open with friends, family, teachers, supporters and your community. In my opinion, you cannot share your story enough - you never know who might benefit from hearing it. Sharing your story is a crucial part of the journey through treatment. It's what conveys to others how they might help, or how they might manage their own journey through treatment in the future, if, God forbid, they experience critical illness themselves. It's the ultimate ask for help.

Eat. Through our first experience with Auggie's Opsoclonus-Myoclonus, I did not. I could not. And because of the fear and stress, I would open a full refrigerator and be overwhelmed by it's contents. I was overwhelmed when I stepped foot into the grocery store, so shopping was often stressful as well. That is why, when meals began showing up last month, we welcomed them. There is something so special about receiving what food is comforting to others. Our friend from Ireland brought a Thai meal of coconut shitake soup and a fabulous pear tart. Another has provided us with the world's best casseroles. A third has come every week with a new variation of pot roast, each tastier and more creative than the last. Our journey through treatment has yielded an unexpected and lovely journey through comforting food.

All because we asked for help.

Auggie has completed chemotherapy, two rounds of IVIG and has done two rounds of steroid therapy. In the midst, he contracted a virus and was inpatient to get him walking again. He has spent hours crying from the steroids and has been on his own little emotional roller coaster. But yesterday, he began speaking again - chattering incessantly - and his eyes are once again full of light and awareness. His memory is back, and he has begun dressing himself, making his breakfast and assembling his beloved lego sets again. One month later, and with a mom who shows the effects of a lot of comfort food, Auggie is on the road to remission. Every morsel of food and every prayer has hit its mark.

Roller coasters. I never really liked them. You have no control over anything when you ride them - your belly drops out, you scream uncontrollably, sometimes bugs fly into your mouth. You get off feeling discombobulated, dizzy and not sure where to go next. And what do you do? Get right back on the next one.

I've lost count how many roller coasters we've ridden over the last few weeks. Each dizzying ride leads to another, followed by the attempt to walk straight, think straight and function in between each wild ride. From balancing our emotions to balancing other people's emotions, being taken care of while taking care of our little ones, and all while swallowing and processing each horrific dip in the ride: cancer. tumor. encephalitis. brain trauma.

Today's ride has a new loop, but one we've been on before. We know how to hold on to our lunch as we ride through this one, but barely. Today's loop was the simple statement: "Insurance is refusing to cover treatment." That is a loop we thought we read ahead on the rails of this ride, but had hoped that the 6 years since riding it last had led to policy change. We thought surely times have adjusted and Auggie's disorder is more diagnosed and recognized than it was 6 years ago. Surely the healthcare system has evolved to rule a proven treatment coverable by insurance. Nope.

So the ride continues. We have a big loop-de-loop to ride today, all while that nasty bug called Opsoclonus-Myoclonus sits at the backs of our throats.

There are those moments of joy when you ride a roller coaster, when people emerge and sit next to you, and give you the lovely diversion you crave. Those beautiful people that emerge from the shadows to stock your freezer, deliver a hot meal, provide you with groceries, or, like today, present you with the chance to spend time with a young college athlete who is looking to bear your burden for just a few minutes. Those people who are not afraid to help carry your load are what keeps you moving each time you step off the ride. They are the ones that will return quietly, again and again, to sit next to you and share the dips, loops, and yes, the bugs in your throat. And for each of you, we're very grateful.