Life was just getting good. It was always good, but having three kids in three years brought lots of challenges. In 2022 we had just moved into our new home, our kids were 7, 9, and 10; and they were getting easier. We were entering the sweet spot of parenthood as they say. They can tie their own shoes and put their seatbelts on, but they’re not yet asking if they can borrow the car. Sadly, it all came crashing down just six short months after moving into our new home. On Sunday, November 13th of 2022, our son, Finn, began complaining of tingling in his arms and legs and we noticed that he had a small limp as he came down the stairs that morning. The day before we had attended a Notre Dame vs Navy game, which made many thoughts pop into my head- maybe he had walked too much the day before, maybe he was having a growth spurt as he was due for one, maybe it was nothing; anything but what was coming for him.

The next day he had a small limp, but we sent him to school. Tuesday morning he actually seemed better, so again, we sent him to school. When it was time for pick-up though that afternoon, my husband noticed he was dragging his foot. That evening before bed I asked him to squeeze my fingers… he couldn’t. The next day was Wednesday, and I was going back and forth with what to do. I decided to take him to his pediatrician. As soon as she assessed him she knew something was seriously wrong and sent us to Children’s in DC. Once there, he was treated as a stroke out of abundance of caution. Many doctors came in to see him and I wasn’t too concerned, until the neurologist came in, and I knew something wasn’t right. Being in the medical field myself, I could tell. This wasn’t going to be good.

Greg got there right when Finn was going in for a quick CT where we were told he had a mass at the base of his brain. Nausea set in.

Then an MRI. This MRI was inconclusive as he could not sit still for an hour. I don’t know an adult that could do an unsedated MRI for an hour and keep still. He was re-scheduled for a sedated MRI the next day. We stayed in the ER overnight in our own room, which was a privilege. The ER was packed; it was RSV and flu season. There were many parents sleeping on the floor in the hallways with their babies sleeping on their chests.

His MRI on Thursday was not getting done and I had to become the empowered mom. I demanded he be scanned before all the doctors went home. We needed results immediately. After the MRI, Greg and I were escorted to the neurology department where many doctors and social workers were already waiting. My sister stayed with Finn while we received the news. Received the news. D-day is what they call it. On November 17th we were told that our 9 year old son had DIPG, a terminal, tragic brain cancer. This monster takes every vital ability a child has until it takes their ability to breath. They are given 9- 12 months. Finn ultimately got 12.

Greg and I walked back to the ER in shock. Putting one foot in front of the other, but not knowing how. Once alone for a few seconds we hugged and cried. We refused to believe it. Denial.

As soon as I saw my sister, I melted into a panic. I was hysterical, stomping my feet, screaming, begging why. I couldn’t lose my buddy. Greg came out of Finn’s room and reminded me that Finn could hear me. I restored what was left of my mom strength, pulled myself together, and went to see my son that was only going to live for another year.

That evening the neurologist was doing an assessment and suddenly Finn’s mouth was drooping and his left eye was turned in. I took him for a walk around the ER shortly after and he could barely walk. From Sunday to Thursday. Just five days. That’s all it took for this tumor to infest his brain. DIPG is a monster.

Greg and I agreed to have tissue sampled from the tumor. We were in the best of hands and felt that it was necessary despite the possible side effects and outcomes that go along with brain surgery. On Friday Finn went in for a brain biopsy, and when he came out he slept for two days straight. By Sunday we were worried. He didn’t seem the same, but our medical team kept assuring us that he just had brain surgery and he needed his rest. As nervous as we were to take him home that day, we did. It was the best decision we had made so far. He obviously needed to be home, because, once there, he perked up to his old self. I’ll never forget driving home that afternoon. I had the same feeling in my stomach as when we had brought our first child home, except this time, it was sadness, despair, and fear. Nothing was ever going to be the same.

Over these next 12 months Finn’s body was tortured. He did standard of care 30 rounds of radiation, which gives these kids time and that’s it. It’s possible for some to regain some function, but Finn did not. Not only did radiation not give him any abilities back, but it made him incredibly sick. I don’t hear of many kids getting as sick as Finn did. He vomited all day. He vomited when he woke up, when he ate every meal, in the car to and from radiation; he only got relief in the evening. He also experienced possessed-like headaches that we could not relieve for him. He would scream like an animal until he was so exhausted he finally passed out. He had many issues with voiding, which I will spare the details there.

After radiation, we got the devastating news that he did not qualify for the sonolasense trial we so desperately wanted him to try. The tumor had too much necrosis, and now Finn was not the perfect candidate for the FDA. I say the FDA, because that is who approves these trials and who they are essentially written for. There was another trial many kids were doing called PNOC022. He qualified for that and it was local. We had consulted with Vitanza labs at Seattle Children’s Hospital as a back up for Car-T, but we would have had to uproot Finn and move without his sisters and Greg. We felt that this move would have killed Finn’s spirit. He needed his family and there wasn’t enough evidence that Car-T was working for kids, and given Finn’s prognosis, we couldn’t take him from his home. This was another decision Greg and I do not regret. But these are the decisions parents are faced with when battling DIPG. It’s all the what ifs you discuss at a dinner party with friends, because you know it would never happen to you; and when it does, the answers you give at that dinner table are not the same as reality.

Before starting the PNOC trial, we were granted a make-a-wish. I couldn’t fill the paperwork out, so my sister did, and for that I am so grateful. We revisited a place in Siesta Key that the kids really enjoyed the year before. Finn was sick the first couple of days, but he was able to enjoy the pool and an aquarium. He went out on the beach twice, but it was hard for him and he had to ride in the wagon. He was such a proud little guy and this was not an ideal situation for his ego. He was angry at his body. He was also on high dose steroids, which has horrifying side effects that include rage and an overwhelming feeling of hunger. When I think about the steroids these kids are placed on, it infuriates me. Why isn’t there something better for our kids. Sad fact, Neil Armstrong’s daughter, Muffie, passed away in the 1960’s at the age of 2 from DIPG, and treatment for DIPG has not changed.

Home again. It’s so different though. We were all trying to stay positive and stay hopeful, but it was hard. Greg and I had submersed ourselves in the DIPG/DMG world. We watched children and young adults die weekly. We knew what the outcome was. We continued with the PNOC trial, which gave us some hope for a few months. He started in February, but by June he was showing major side effects from one of the drugs. The Paxalasib was burning his skin. This was a common side effect, but Finn’s was one of the worst cases they had seen. Then other kids started popping up with severe burns and flaky skin. Our medical team was able to get the trial stopped until they could figure this out, which meant we were off trial too.
I remember telling Finn that he had helped other kids by doing this trial, and his eyes got so bright. He was so proud that he had helped in some way. And there began our talks about how he wanted to live the rest of his life. He knew he wanted to keep fighting and he knew he wanted to help find the cure to this awful disease. As a family, we decided to request the sonoalasense trial under compassionate use. Our medical team agreed to this and began the long process of applying to the FDA and ethics board. I say “long process”, because it took over two months to complete the approval and by then, in August, Finn had went into full progression, meaning that the tumor was growing. It didn’t seem like it on his MRI, but he had started drooling and slurring his words. We opted for another round of radiation, which was only 12 sessions. We finished around Labor day, but by then Finn was no longer mobile, could barely talk and his right hand was going down. He never had use of his left through the entire diagnosis.

By now, I am by Finn’s side 24/7. I won’t leave his sight. My job was to keep him laughing and engaged, even if I had to go through the alphabet to figure out the word he was saying, which was painful and made my stomach hurt. But he was always in such good spirits, even when we had talks about dying, he would cry, but it was because he was worried about us, not him. Don’t get me wrong, he was absolutely scared, but his concern for us was greater than his fear. What always interests me still to this day, is how much Finn wanted to talk about dying, even when he was little, he would ask me about it frequently. The week before his diagnosis, he came downstairs twice after being put to bed asking about heaven and dying. He was upset these times though. He didn’t want me to die and he wanted to know how I knew there was a heaven. I hugged him and told him I could just feel it and for him to pray about it. And two days later, he started having symptoms.

Finn was deep as a little kid, but during his diagnosis he became almost monk-like to me; priest-like. At the end especially, he had this nod of his head that made me know he was ready and waiting for the day, and that he was going to be ok.

He underwent two rounds of sonolasense under compassionate use. He was the first child to have sonolasense out of the pons and the first child to have sonolasense on a spreading tumor that had not received radiation. As I write this, I believe he is still the only child that has done this. Since he was not on the formal trial, his medical team agreed to do this by our request. Finn wanted to help other children and we knew we would be donating his tumors. Our hope was that they could study what sonolasense had done out of the pons and without radiation.

After the second round of sonolasense in November, it was clear that it was not working and one of his tumors was growing rapidly. Our team gave us the option of trying radiation to this area. I was done with treatments. To me, it was time to go home and be together as a family, but Finn and Greg wanted to keep going, and if there’s anything I learned through this is that, your spouse or partner needs to feel like everything you could do, you did. So off we went for another mask and 10 rounds of radiation. Finn started his final round of radiation on November 27th, over a year later from diagnosis. During these next five days, he would quickly decline. We were asked to sign a DNR by our radiation team, which was one of the hardest things we had to do. We made it to Friday and were excited for our weekend. We were invited by Children’s National to attend their Fantasy flight, where terminally ill children can get on a flight to the North Pole. (Not actually the North Pole.)

Saturday morning we got up early to get to Dulles. Finn was having difficulty breathing, but we still got on the road. We were half way down Suitland Parkway when Finn was expressing that he needed oxygen and he never asks for oxygen. I knew we had to go back. When we got home I knew what was happening. I looked into his eyes and asked him if he thought this was it, and he replied “yes” with his eyes. I told him he was to stay with us one more night. I needed him to sleep in our bed one more time. We spent that day as normal as possible. We stayed in good spirits. Finn and his sisters interacted as best they could, but they were laughing. Finn could still laugh, and for that I’m grateful.

I washed our sheets and nested a bit as I knew family would be coming over the next day. Our hospice nurses came out to confirm what we thought and by the afternoon Finn needed morphine to get his rapid breathing under control; all for comfort.

The night was rough. I think he was trying to hang in there so everyone could say goodbye. We had already discussed how he wanted his transition to go months before. I had suggested just grandparents and aunts and uncles, plus all the younger cousins (Finn has over 30 first cousins). He agreed to this early on and I know this is how he had imagined it; and that’s exactly what happened.

My parents arrived around 9. Greg and I brought Finn to his couch and got him all “snuggy”, as I would say to him. Our oldest daughter, who is only 12 months older than Finn, shouted “look!” We all shifted our heads to look outside in our backyard, and a piebald deer was walking down towards the river. We had never seen this piebald before. He was the most beautiful white buck I had ever seen. And at that moment, I think we all knew this was going to be Finn’s day of transition. Once everyone had gotten their moment with Finn, we dosed him heavily with morphine, as he was struggling to breath. He relaxed and fell into a slumber. He would respond here and there, but for the most part he slept until around 3:00 and I noticed his little hands were relaxing. Normally, they were tensed into a fist from the tumor. I announced that it was happening. Greg, me and the girls surrounded Finn as took his last few breaths. And at 3:16 on December 3rd of 2023, Finn left his earthly home. And, although I am angry with God, I know he his safe in the arms of Jesus.