Our two boys -- Adrian (age 3) and Nolan (age 5) -- mean so much to their mother and I. Adrian, pictured above (after his diagnosis), is the best, sweetest, kindest boy and brings so much joy to everybody who sees him. But especially to his family, who love him so much more than we could ever say.
On November 13th, 2018, my wife picked our beloved youngest son, Adrian (then 2, now 3), up from daycare. He had been stumbling and having a hard time walking, only the latest in a string of strange symptoms ranging from sudden fatigue to constant nausea, that had been steadily getting worse for a few weeks. We had taken him to his regular doctor about five or six times, but their theories were well off the mark - after checking him into the Emergency Room at a specialized Children's Hospital, they quickly got him the MRI we had been advocating for with his regular doctor and the answer came back the next day - he had a massive brain tumor near his brain stem that had swollen up to close off his brain's ventricles, allowing the pressure of his cerebrospinal fluid to build up to agonizing levels.
I remember sitting in the radiologist's office with my wife, hearing that my dear little child had a massive tumor, seeing the MRI with this huge, awful thing in the precious, developing brain of my defenseless, loving, considerate, hilarious little boy. I just randomly blurted out 'my little boy' in a quavering voice, and I remember how unhappy to be telling us this the poor radiologist was. I remember his mother being so devastated she could barely see. It was one of those moments where your life separates into 'before' and 'after.'
We didn't yet know if the tumor was malignant, but we didn't have enough time to contemplate this because my son needed instant intervention. He had to undergo his first surgical procedure, to get a hole drilled into his skull, with a drain put in his ventricle to start getting that pressure down. After a surprisingly rapid recovery (our first sign of how absolutely determined and strong this boy is), he was doing so much better. He had an outrageously voracious appetite all of a sudden, with the pressure he had been struggling with for months now blessedly missing from his brain. He downed plates of pancakes and then demanded hotdogs a few hours later. His mother and I were so happy to see him eating so much, as a hugely suppressed appetite had been one of the symptoms that had been making us worry about him. Of course, he had serious brain surgery and chemo in his near future, so the daily feasting on plates of food wasn't going to last long. But we didn't know that yet.
Next came his brain surgery. Through the vagaries of chance, his surgery was scheduled for November 19th, his mother's birthday. We tried to prepare our littlest one for what was coming, and also tried to explain the seriousness of the situation to Nolan, Adrian's big brother, as best we could without scaring him, and then we went with the nurses who came to take Adrian and said goodbye after he was put under. After a nervous six hours, we heard back from the lead neurosurgeon. This tumor was growing right along the brain stem, which controls breathing, heart beating, and all the other autonomous behaviors we rely on to live. It was always a tricky, terrifying procedure. However, the surgery seemed to go well. At the end, the team of six surgeons had a disagreement: one holdout felt that some of the tissue that was left was tumor and not brain stem. The other five disagreed. We have come to find out, in the intervening time, that the single surgeon who advocated for their removal was correct. If we are confronted with a worst-case scenario, a horrifying prospect, it's hard not to get hung up on this moment as a chance to have made a difference.
But, at the time, we still didn't even know if it was malignant. We just wanted to take one thing at a time. We knew he would need a lot of recovery time, but we were also nervous because of the high likelihood of side effects from surgery in that area. There was a non-trivial chance that he would awaken from his surgery on his mother's birthday and we would find that he had lost his sight, his power of speech, or some other pivotal faculty. We were so relieved when he woke up and, though bleary-eyed, could still obviously see us. We hugged him and each other and cried tears of joy when he spoke to us and told us he loved us. We were so happy he could see and talk, two side-effects we had been warned about at length, to notice for a few days that he had lost his ability to balance. He could no longer stand without help, let alone walk. I'm writing this on May 13th, 2019, the sixth month anniversary of taking Adrian to the ER, and 6 days ahead of his six month surgery anniversary: despite very real progress he's made, especially in the last few weeks, he has not taken a single step unaided since mid-November, 2018.
A few weeks later, we got word that it was definitely malignant, but they didn't yet know what kind it was. It was then that his chemotherapy started. We didn't know what to expect, we just knew he would be sick. He came home from the hospital with us, and after a day he started to look terrible. He still had his hair at this point, but his face was almost grey. We thought he looked like this because of the chemo, which we knew would make him sick. But we still planned to take him to the hospital. We waited, however, to take him in, because within the hour his homecare nurse was coming in. She came in, agreed that he should go to the hospital, so his mother left to take him to the ER while I stayed at home with his big brother.
When she arrived with him at the hospital, the staff took one look at him and suddenly, within seconds, my wife said that thirteen different EMTs, nurses, and doctors were working on him, attaching machine after machine. We didn't know it, but when the chemo had knocked out his immune system, a massive infection took root over the course of 24 hours and had spread to the point where he was now technically in septic shock, a condition so serious that only about 25% of people diagnosed with it are alive 12 months later. We were horrified. He was put into a medically-induced coma, intubated, and filled with tubes. For three and a half days, he slept. The first day, we were fairly certain he was going to die. When he survived the night, we relaxed a little, but we were filled with a strange mix of shame, despair, and thankfulness that the worst had not come to pass. He shook off the infection at a truly remarkable rate and eventually came back home to us. I'll never forget the sight of him in the Intensive Care room, tubes covering his mouth and nose, unconscious yet visibly fighting back against the infection that had come so close to claiming his life. He was surviving, and you could see it happening. He is the toughest person I've ever met. ￼
During this time, my wife was on medical leave from her job and I was going in to work from the hospital about half the time. My wife and I split nights at the hospital, but going in to work from the hospital wasn't a great situation: sometimes Adrian would be awake, and Mom wouldn't be there yet, and he'd be throwing up and begging me to stay. It was hard to leave in the morning. It was a very difficult time for the four of us as a family: Adrian's mother's father was staying at our home to help us get Nolan to school -- I had to be off to work before he woke up on the days I was home, and I went straight to work from the hospital on the mornings - so Nolan wasn't getting to spend nearly enough time with his parents, let alone his whole family together. It was so hard: Nolan would wake up a half hour after bedtime, crying his eyes out and saying he wished he could go back to before when everybody was happy. It was hard to know that, despite everything we had worked to do to make sure that our children didn't have the desperate, sad kind of childhoods we had, that something entirely outside our control was making things incredibly hard on them both. Adrian was struggling with the realization that, for the time being at least, he was unable to walk, and upset about the loss of his hair. He had such pretty curly red hair (and will have again!) and had been fawned over by strangers his whole life about it, so to suddenly lose it all was pretty tough on him. ￼
The chemo continued, with Adrian getting one more serious infection that was nonetheless nowhere near as severe as that first bout of septic shock. He recovered decently as we waited for the chemo to end and his scan to come. Right around this time, we finally got word back on his tumor. For months, we had been told that it was 'Medulloblastoma,' a serious but common kind of brain tumor, and one of the more survivable malignant brain tumors. However, further genetic testing revealed that it was actually far worse: a rare, much more lethal kind of brain tumor that had only been fully discovered in the last few years called 'Embryonal Tumor with Multi-Layer Rosettes.' The survival rate for Medulloblastoma is around 60-66%. For ETMR, it's around 25-30%. We were obviously crushed, but hopeful the chemo did its job, still believing that all the tumor had been removed during his surgery. The results of his scan gave us the bad news: not only did some of his tumor remain when the rest was removed, but--far from being destroyed by the aggressive chemo that was so intense my son almost died of septic shock as a result--the tumor had actually grown during the course of chemotherapy.
Our next hope was radiation treatment. Radiation treatment for children under the age of 3 is not recommended because it can cause serious reductions in IQ and cognitive capacity in developing brains, but the nearby Mayo Clinic has a new form of radiation treatment called the 'Proton Beam' that is far safer for little ones, as well as being more effective. Adrian, upon hearing that he would be treated with a 'Proton Beam,' stated emphatically that there were no ghosts in his head. (This, for those who don't understand, is a reference to the Ghostbusters' proton packs.) He is the funniest little boy I know, along with his big brother. ￼ The radiation required six weeks of treatment, five days a week. The appointments required us to leave for the 1 1/2-2 hour drive at five thirty in the morning, at which point Adrian needed to be knocked out with Propofol so he wouldn't move during the treatment. He will have a small tattoo of a dot on his stomach for the rest of his life, a mark Mayo put there to help align him for the proper beam targeting each day.
About halfway through his radiation treatment, his mother ran out of leave at work and I had to give up my job so that I could be with the kids (my old employer was moving to Texas without us in a few months, and she's been at her company for over a decade). Now, we are awaiting a new scan scheduled for 5/16/19, and then we will have an appointment a week later when the doctors have had time to look the scans over and decide what's happening. The best case scenario would be that the radiation worked, and the tumor vanished. The second best scenario is that the radiation worked, and the tumor has left scar tissue that will need to be watched for months to years before we can be certain it isn't cancer. The next worse scenario is that the radiation had no effect on the tumor, but it hasn't spread, at which point we have found a surgeon who is both an expert and willing to operate -- no surgeons were willing to operate before radiation because it's in such a risky place. This surgeon would, in this scenario, remove the tumor and there would be no lingering side effects of the surgery. The next scenario is the same, but there are serious side effects from the surgery. Then there is the possibility nobody will operate even though he might need it. Lastly, the most horrific option is that the radiation had no effect, and the tumor might have grown and spread. This would be terrible news, so terrible I haven't even come to grips with the possibility.
My wife had been in touch with several other families who had children struggling with this kind of rare tumor, and a couple of the kids passed away after the tumor suddenly spread, and we are just horrified that might happen. ￼ It's a struggle to remain positive, though being with my children helps so much. Nolan's been struggling with the situation, Adrian's mother has been beside herself with terror about what our little boy has had to go through, and our financial situation has become almost untenable. Each month is a battle to pay the mortgage and *some* of our bills.
We have had several judgments found against us for unpaid bills in the last month and a half. Our water might be shut off at any time: it's a race between my wife's paycheck and the Water Department. We are applying to tons of foundations and other resources, and doing everything we can, but it is becoming incredibly difficult to imagine being able to keep our house that we worked so hard to get, and I really don't want to sell all of our musical instruments, erasing a lifetime of struggle and working to overcoming limitations only to make a barely-perceptable dent in our tens of thousands of dollars of medical debt. We have been forced into being a single-income household shortly after using most of our savings to move into this house - we needed to be here in time for Nolan to start his public schooling out in the best school district. We certainly didn't anticipate having this awful medical emergency so shortly after moving.
People have been unbelievable generous. Aside from a British woman who described herself and her friend as 'empaths' becoming convinced that I wasn't really Adrian's dad because my hospital visitor's tag in a picture read 'Guardian,' and she felt it should have said 'Father,' launching a literal YouTube campaign to use the 'investigative research' she did in 'exposing' me to raise money for her fortune teller Patreon page. Adrian and I were almost asleep in his hospital room at 11:30pm at night when a nurse, a security guard, a social worker, and a member of administration came in to the hospital room to tell me that these women had been calling the police in our town telling them to check the hospitals in the area for my son. The hospital, of course, knew who I was and helped devise a heightened security strategy to protect our family from this kind of interference, but it was a really upsetting problem to have. This happened the night after we found out that the survival rate for his kind of tumor wasn't 66%, but 20-25%. Not a great day to have that happen. "You can't lie to an empath," one of these two women told me. I wasn't too inclined to use anything based on the word 'empathy' to describe her actions. ￼
The overwhelming response, however, has been warm, generous, encouraging, supportive, and literally life-sustaining. We wouldn't be able to feed our kids or stay in our house without your donations. We are woefully short: we could raise tens of thousands of dollars in the next month and still just be granted a pleasant reprieve rather than surety of our futures. But we wouldn't even have a chance without the help of so many kind people. Thank you for everything you've done for our family, and for my precious little boys. We also have an Amazon wishlist that has many toys, books, games, puzzles, and other things the boys want, along with the occasional medical/household supply.
You can click the link to help with our Wish List: https://www.amazon.com/hz/wishlist/ls/3QWZGCYFE0JM3?ref_=wl_share
We will give updates to let folks know what is developing with Adrian's treatment. We will have news of one kind or another soon, with his scan coming up, so I'll make sure I let you know. ￼￼ ￼ ￼ ￼ ￼ ￼ ￼