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5/26/2017 Latest post:
Andrew Sylvester Haggenmiller –By form he’s three, by his own insistence he is six. In fact, he is so convincing that multiple times we have had to reassure medical staff that the bracelet he is wearing is accurate. Like many three year olds he is also occasionally 13 and unlike many three year olds he is frequently 60. I don’t know of many three year olds that love Paw Patrol, fire trucks, driving through the Lowry Tunnel, can hum along to the theme of MPR’s All Things Considered, knows the lyrics to most Cat Stevens songs, uses a shoe horn and has a vocabulary that makes regular use of “preferably” and “quite likely” all while being witty enough to make fun of his dad’s political beliefs. If you were to follow Andrew through the course of his day, you would see a beautiful little boy who greets kids on the street by shouting “HELLO FRIENDS!” from an unreasonable distance and at a socially disadvantaged place as he likely has never met them before. When approaching an adult, you would see the same boy sometimes shyly hide behind one of our legs but more often, he would extend his right hand out for a hand shake while simultaneously using his left hand to gently cusp your upper arm while saying “Nice to meet you, sir.” He crudely farts at the kitchen table and laughs a deep hearty laugh. In the next breath he’s so successfully persuading and negotiating something to his advantage that you’re left saying yes both because you think it’s a great idea and you’re just impressed at his prose. All boy. All man. All Andrew.
Over the last couple of months, we noticed a slight tremor in Andrew’s left hand. This was most pronounced when he was attempting to eat with a fork, put together a puzzle or do something else that could be quickly dismissed as a three-year-old learning fine motor skills. Still, it was concerning enough that we made an appointment with a pediatrician. Our regular pediatrician was on vacation, so we opted to see Dr. McSherry at Stellis Health in Buffalo. In the roughly 3 minutes we met with Dr. McSherry she concluded that Andrew had a simple “benign familial tremor.” She then insisted that we go home and “Google it.” McSherry made this conclusion without asking family history, or even taking the time to ask if she should be assessing the three-year-old or the one-year-old that was actively playing in the exam room. Suffice it to say, we were displeased with the dismissive diagnosis.
Still, we know that doctors talk to doctors. Without referrals its difficult to get in front of specialists. Once our regular pediatrician came back we met with her to a much better treatment and consideration. The climb up the specialist ladder quickly began. We met with a neurologist at the Minnesota Epilepsy Center. We were referred to Gillette in St. Paul where we met with a movement specialist. Within a few minutes of talking to us and watching Andrew play we were ushered to Imaging where a Rapid MRI was completed. In his words “I knew within a minute of watching Andrew he had something growing in his brain.”
Just like that, life changes.
The MRI that had once been scheduled for September and negotiated to June was happening the same morning in May. A rapid MRI confirmed a tumor. A comprehensive MRI the following day confirmed a really bad tumor. A biopsy the day after confirmed that he has a Diffused Midline Bithalamic Glioma, Grade 2. We have since learned this is a rare tumor impacting a small number of children. Diffused indicates it is not a mass, but rather a spider web through the brain. Bithamalic refers to the location, deep and center and covering both the left and right sides of his brain. The tumor cannot be surgically removed given its size, location and type. It can be treated through various means, primarily radiation, but again given the size, location and type it’s not likely to completely kill 100% of the cancerous cells. For all these reasons, his cure rate is about 30 percent. If you’re blessed like I was until about two weeks ago to really have no idea what “cure rate” means – that is the likelihood of being alive 5 years after diagnosis.
So, Andrew won the lottery of shit-tumors. As parents we protect and when something happens we fix. And really, that’s why I make a point of detailing the really poor, early diagnosis. We are Andrew’s Advocates. Vicki is smart and I have every confidence that if a train locomotive fell on top of one of our boys, she would lift it off with little effort. I am tenacious and relentless. Together we sought out the correct diagnosis and have worked towards the best possible treatment. Not every Andrew has those advocates. Those parents and those Andrews would have had a much more enjoyable summer and a much more devastating fall than we will have. My heart aches for them.
It’s really easy to be angry and depressed. Believe me, we are…a lot. But, there’s also a lot of good information to share as well. Our oncology team, led by Dr. Anne Bendel, consists of the best that Children’s Hospital has to offer and is professionally & technically competent but also empathetic. It is easy to see they care for Andrew and our family. My dad, perhaps the best networked janitor in the Mayo Health system has made a family friend of an oncologist who has facilitated a full second opinion in Rochester. Specific to Andrew, often this tumor comes with various mutations which further negatively impact prognosis; Andrew’s does not. Also, as a simple hand tremor brought us to this point, this likely means the tumor is slow(er) growing and treatment could prove to prolong quality of life longer than in some with the similar diagnosis. Andrew is doing really well through the initial treatment. He understands what is going on, as good as any three-year-old can understand. Candidly, he’s stronger, lighter spirited and is smarter emotionally than his mom and dad. He is laughing much of the time. He’s angry that he has to go to the doctor so much but also understands they’re trying to help. He’s playing, he’s running and he’s tired. Let’s not forget about Henry. Oh, Henry. Putting it simply, that little guy can clear red eyes with laughter; an amazing and needed talent as of late.
We also are blessed and fortunate that our family, friends, neighbors, employers, coworkers and colleagues have been amazing. It was my brother who is largely responsible for pushing me - to push our way into see specialist’s months earlier than we were scheduled. My mom took a week off of work to watch Henry as we stumbled through the initial diagnosis. Vicki’s parents hit pause on their business and made it from Wisconsin within hours. Within days, Vicki’s sister wrote a book of poems and prayers in Andrew’s name. Our neighbors noticed the small things, like changes in schedules and reached out early and continue to reach out to make sure we were OK and well taken care of. The Mom’s Club, collectively friends of Vicki and the boys have established the most elaborate and delicious food train worthy of banquet status. The mayor, city council and my coworkers in Howard Lake have not only kept the day-to-day business of the City going but also some really big important stuff too. They have also made sure the boys have toys to play with at appointments and I have wine to drink at night. Our friend and professional photographer took it upon herself to start a fundraiser unbeknownst to us. We’re now in just about every major religious denomination’s prayer circle within a 100-mile radius and I believe it’s working. Every day the beat reporter for the local newspaper and our family friend sends me political jokes and inspirational quotes. Frankly, if you’re reading this we very likely owe you a Thank You card. It’s hard to be truly grateful when you only need ONE THING, but believe me…we see it, we feel it, we are grateful. Thank you.
People are good. Cancer is not.
On May 18, Andrew began daily radiation treatment which will run through the first week of July. We’re researching supplemental treatments, clinical trials and everything including voo-doo-dances. We have inquired at all the big places like St. Jude’s, Dana Farber, Mayo Clinic etc. We’re waiting on some additional tests to understand additional or supplemental treatments like variations on Chemo. From there – one day at a time.
WHAT WE NEED
We will need help. I’m sure of it. I’m not sure what that is yet. Believe us when we say “we’re well taken care of.” We have not been intentionally secretive, but at the same time until we knew what we were up against and as we got through the immediate triage of the situation, there hasn’t been a lot of time to do much else. So, here’s how you can help in the meantime... Go home from the office early, leave the fields, put down your hammer. Put down your phone, tablet or whatever else distracts you. Surprise your wife, husband, kids, grandkids or neighbor. Talk to them, hug them tight. Get into an argument, find something to laugh about or that you just didn’t know about each other. Sit in it. Realize just how fragile and temporary this life really is.
And pray. Pray a lot. Pray for Andrew, pray for our family. Pray for our Care Team. Pray for the Varian Trilogy radiation machine to be miraculously effective. Just Pray.