What a week it’s been. So many emotions. So much pain and fear felt. But also so much gratitude. And so many tears of joy were shed this week.
Things started feeling like they were actually trending in the right direction. We’ve been told that Ian has been for the last couple weeks, but it never felt that way. Seeing your baby in a coma with tubes coming out of his face and head didn’t make me feel like we were in a good place. Each day was a reminder to try to be grateful because he was, and is, still here with us. But fear of what could happen, the worst happening, always seemed to take over.
Ian was taken off the medicine that put him in a coma, and within an hour, he began moving his little fingers. The doctors had told us it could take several days for the medication to be completely out of his system, but our boy showed us he was ready. Ready to wake up. Ready to fight. Then they weened the muscle paralytic medication, and we saw Ian open his eyes for the first time since we got here 3 weeks ago. It was a beautiful moment. For 2 seconds, before he started crying. Then it became bittersweet. As you can imagine, he was probably confused and in pain, but they kept him comfortable. And we got glimpses of him opening his eyes to see us.
Once he was awake, the neurosurgery team decided to have another CT scan primarily to check how the bleeding was clearing up. Obviously, in doing so, that also checks for anything else that could arise from this. Once that came back looking good, they decided to get an even clearer picture of everything going on so they had Ian get an MRI next. The MRI showed there was still some blood in his ventricles. When Ian was first diagnosed, we were told he had “too many tumors to count” because there were some smaller, pencil-tip-point sized ones. The MRI showed it appeared these lesions may have grown slightly, but the results also could have shown inflammatory spots from everything going on. At that point, it was too hard to say for certain what they were, but neurosurgery let us know about the findings regardless. Within that hour of finding the possible growth, because there was concern that Ian’s tumor that hemorrhaged was/is malignant, and because he was doing well otherwise, it was decided that he would go in for surgery the following day to biopsy the tumor. The biopsy was the most important thing so that we know what we are dealing with and can get Ian started on treatment as soon as possible given the malignancy and high-grade characteristics. Time was of the essence. They also said they would try to remove what they can of that tumor, as well as the additional tumors. They also said they would get out as much blood as they could from the ventricles to help speed along the healing process.
On one hand, this is what we wanted. Just cut out the monster. It’s what we’ve wanted since July of 2019. But we were always told that Ian’s tumors were inoperable. The kind of tumors Ian has is considered to be glioneuronal. This means they are a mix of neural and glial components, which basically means his tumors are mixed in with his nerves and blood vessels. They are essentially incapsulated within his brain, not just sitting on top and around it. So when you try to remove them, you risk taking pieces of the brain itself. So when his inital diagnosis came back as low grade and benign, it wasn’t worth the risk to try to surgically remove them. Fast forward to now, you can imagine the fear we felt knowing that the time has come where they felt the benefit outweighed the risk this time. And there was A LOT of risk involved. This includes what I just mentioned about the placement of the tumors, a higher risk of his tumor rebleeding, as well as bleeds elsewhere within the brain and seizures. After surgery, there was risk that Ian would not be able to communicate with us or even understand us. There was also risk of his memory being affected.
We were fearful, very fearful, but we knew it needed to be done. We sat with him for the next 24 hours and just told him how much we love him and how strong and courageous he is. Mike and I sat in the same spot we did during his first biopsy, and we waited for 4 long hours. Every minute felt like an eternity. We talked about treatment, what our life might look like when he comes out, and we also, unfortunately talked about the very real possibility we could lose him. Ever since he was diagnosed, I’ve received a lot of pushback from people who told me “not to think that way.” But how can I not be afraid of losing my son? My baby boy? Multiple tumors, whether benign or malignant, are not supposed to be on your brain. It has affected our everyday lives even though we initially had the best-case scenario out of that situation. And now look where we are. A tumor hemorrhaged. A tumor may have turned malignant. I always felt invalidated for my feelings, but if this has taught me anything, it’s that we need to fight for more awareness. More research.
The truth of the matter is, as Ian’s parents we have to decide what is best for him. We will go to great lengths to get him what he needs, and we are hopeful and optimistic that Ian can beat the odds, but there is also a sense of reality that cancer does kill people. Even kids. So knowing this, we just want to do everything in our power to give Ian the best life possible. Both of our kids for that matter. Life is short, and you never know what tomorrow will bring. You can’t put the things you want to do on hold for the “perfect time” because the perfect time will never come. There will always be doctor appointments, medications, hospital stays, and high risks for multiple things. But we can make time for the fun things. To make sure Ian and Gabby know they are cared for, safe, and loved.
Anyway, we see our surgeon come in the waiting room. She calls us into the private conference room, our hearts beating fast and our stomachs in a knot. The first thing she says is “I have all good news.” I felt the breath I was holding in come out, not knowing fully what the good news meant, but at the very least I knew he made it out. We get another day with our boy. And then she said it…they were able to remove 95% of the tumor that hemorrhaged. 95%?! Almost all of it?! Almost all of a once deemed inoperable tumor?! This didn’t feel real. Mike and I looked at each other with the happiest tears in our eyes. She did say the other tumors looked the same as before, and did not look like they had turned high grade. The little ones she couldn’t even see. It sounded like we may have misunderstood something about removal of the other tumors, but we got the one that was causing all these issues out which was most important. But then there was more: she said the preliminary came back as low grade. No. Way. There’s no way we are that lucky. Now, preliminary isn’t always accurate. And our team of doctors have let us know that they are hopeful it’s correct, but are very skeptical, and just want us to be aware that this may not be the case. Fair enough. We’ve been in this place of having faith and hope of how things will turn out, but also being realistic and not hanging out with our head in the clouds, in denial about all that is happening. For now though, this feels like a win.
The day after surgery, we talked with the PICU team about taking out Ian’s breathing tube. It was decided we would do it in the afternoon after his feedings through his feeding tube were stopped for a couple hours. He had passed his breathing test overnight, and we knew taking out the tube would help make him much more comfortable. But Ian had other plans. He decided an hour after we talked to the team that he would take matters into his own hands, and he disconnected the outside of the breathing tube from the inside of the breathing tube. With his tongue. Yes, you read that correctly. Ian was turned and faced away from me. I heard his monitor beeping, and just got up to check why. I saw his breathing levels were extremely low. When I looked down at him and noticed part of the tube was out, I ran out of our room and started yelling for help. A code was called. Mike had stepped out for a minute to get sugar for his coffee, and of course all of this transpired in that moment. I did my best to remain calm, but nonetheless was still scary. Everyone was prompt to help though. Although initially they were able to reconnect the tubes, the attending doctor decided he was ready, and it was okay to take the tube out.
Ian has been doing well since, despite just having brain surgery and being in a coma for 3 weeks. He’s been working on physical therapy, occupational therapy, and speech for communication as well as swallowing. Ian initially had 2 drains placed to relieve the pressure in his brain. After the biopsy, they took one of those out. Currently, we were able to get Ian to a put where we can clamp the other drain. In other words, it’s still in place if we need it, but it’s closed off from draining any fluid out to see if Ian can do without a shunt placement. As long as his cranial pressure stays down, and as long as his CT scan early tomorrow shows that the ventricles are not enlarged, they will take the drain out, and we will be one step closer to getting out of the PICU. If it’s determined he does need a shunt, Ian will go in for a second surgery tomorrow afternoon. This is more routine, and recovery time is usually only a day or two.
All in all, the doctors have been pleased with the progress Ian has made so far. We still have a long road ahead of us between rehabilitation and treatment depending on the results of the biopsy, but we are so thankful we get to see Ian’s eyes, feel his hand squeezing ours back, hearing his little voice trying so hard to make words. Every day we get another day with him is a blessing. We are so grateful for everyone whose been in our corner to support us and pray for us. We feel so much love and kindness from family, friends, and even complete strangers. Thank you for following along with us. Please continue to pray or send good vibes/love for Ian’s healing.
