What a busy few weeks it’s been. It’s been almost 2 weeks since I gave my last Ian update. It feels like it’s been longer than that, and yet, my days are running together. If I wasn’t counting down the days until we can bring him home, I don’t know that I would know what day it is. Speaking of which, we get to bring our sweet boy home in 9 days! We’re finally in the single digits, and we cannot wait to bring him home! It’s crazy to think 2 months ago, I wasn’t sure if that was a day we would get to see. But it was all well worth it if that means our boy is coming home to live his life.
Ian has been making great strides here in rehab, and we see him getting stronger every single day. He was able to get his feeding tube removed and can eat anything short of a T-bone steak. He’s also able to swallow thin liquids now without the help of thickener. Because of this, speech therapy has been able to move from working on swallowing with him to his actual speech. Ian was receiving speech services before his hospital admission but seems to be pretty much back at baseline now. We started him on an ADHD medication, which actual seems to have helped with his speech. We see him more engaged with us and is more able to focus on us and what we are saying to him.
For occupational therapy, the goal is to get Ian to move his right arm more, specifically wrist, hand, and finger movements- more fine motor skills. Although Ian still needs some work with this, he’s improved so much from when we first got here. He really wasn’t moving his right side at all when we arrived a few weeks ago. But then fast forward to days like today, Ian spontaneously grabbed one of his medication pills with his right hand and tried putting it in his mouth. He was able to get the pill up to his mouth, but didn’t quite actually get it in. But this is still amazing progress for him, and I made sure to celebrate that with him so that he continues to be encouraged to do it in the future.
For physical therapy, our goal is to get Ian moving again like the active, rambunctious 5-year-old he was before all of this happened. Ian has been starting to stand without someone else supporting him. He still needs to hold on to something to stand, but he supports himself while doing so. He’s starting to try to sit himself up in his own bed, and he does great just sitting up by himself in a chair. Because Ian’s right leg is significantly weaker than the left, he will be coming home with a right ankle brace to support him when he stands and walks. He’ll also have one for nighttime to help keep his right foot flat so that it doesn’t bow, making it harder to put pressure on it during the day. In addition to this, he was also fitted for a medical stroller to help us get him around while he still learns to walk again and a bath chair to help support him.
Also since my last update, we got the results of Ian’s biopsy. LOW GRADE!!!
This was the most beautiful noise for us to hear. I cried the happiest tears and held Ian so close to me just saying “you’re going to be okay.”
There was thought that the tumor that hemorrhaged had turned malignant. Our inital diagnosis was called a DNET, or dysembryoplastic neuroepithelial tumor. It is a glioneuronal tumor, which means it contains properties of both glial and neuronal cells, meaning it’s essentially incapsulated within the brain. It goes through blood vessels and brain tissue, making it hard to distinguish what is tumor and what is the brain itself. These kinds of tumors are typically cured with surgery, but Ian’s were deemed inoperable for various reasons. We watched for a year before starting chemo, but these kinds of tumors don’t get treated with chemo, so we treated it like a low-grade glioma. This kept them stable, but after treatment stopped, we noticed slight growth, particularly the one that hemorrhaged that is located in between his ventricles. The thing with chemo is that you have to give your body time to heal and rest from it. It’s literal poison to your body. So, we tried to let Ian’s body heal, after all, the tumor shouldn’t grow fast…
During our routine scan in September, we found the one tumor between the ventricles had doubled in size since our scan in June. Because of it’s location, Ian was at high risk for hydrocephalus, which means a buildup of fluid within the brain causing pressure. This can be life-threatening if not caught in time. Our oncologist had us meet with neurosurgery the very next morning. She went over the plan to relieve the pressure and get a biopsy of the tumor to make sure this wasn’t something new we were dealing with. I don’t know why, but at the time, I don’t think I quite pieced together that malignancy was an option. I don’t think I had time to think that far ahead before Ian spiraled later that night. It wasn’t until the next day we heard the words “malignant.” After he already had to have emergency surgery because the pressure became too much after the bleed.
Between the bleed and the sudden rapid growth, we were told there was a high chance the tumor mutated and became malignant. We asked if there was a possibility it was low grade, and we were told there was, but that it was rare. But rare doesn’t mean impossible. After Ian’s surgery to remove the tumor and get a biopsy, the neurosurgeon told us the preliminary came back low grade. We still had to wait for biopsy results though, but if it wasn’t clearly malignant, we felt like we might have a chance.
Then the pathology came back low-grade but was considered inconclusive. Given the circumstance, we still had to wait for the genetic markers to confirm.
On November 1st, those results came back after almost a month of agonizingly waiting… as mentioned, it was still low grade. But we did get a new diagnosis. Pilocytic Astrocytoma. This is a type of brain tumor that originates from star-shaped cells called astrocytes, a kind of glial cell, which is within the same family as DNET from my understanding. We were able to get this diagnosis due to advancement in diagnostic technology. Somehow, we feel like this diagnosis is better because there are proven treatment options for pilocytic astrocytoma’s. Not that we wanted a diagnosis at all, but if this is a road we have to go down, we are thankful for a low-grade diagnosis.
As relieved as we were about this, we had to ask: why did it grow so fast if it’s low grade? According to our oncologist, the thought is that Ian’s tumor has been slowly bleeding into itself over the course of roughly 9 months when the growth was noticed. Until September when the pressure became too much, causing the hemorrhage. They said this happens in only 2-3% of cases with the mutation Ian has. This was that “rare case” they talked about with us in the PICU. This is why the prepared us for malignancy over giving us hope for this to be the case. But I can’t tell you how it feels to be that 2-3%. There are no words to explain the relieve, the gratitude, the happiness. Our boy is a miracle.
Once we had our diagnosis, we were able to start planning our next steps. Mike and I went back to work this week. We have been blessed to receive money from the fundraiser our family and friends set up for us (shoutout to Hair Art by Alyssa in Port Vue for sponsoring! Alyssa is a family friend who so graciously put this together for us!) Our outlook on life right now though is to not wait. So we have a lot of things we want to do with our kids now, so the sooner we could get back to work, the more we could make that happen. Mike is fortunate enough to work remotely and is able to stay with Ian at the rehab center during the week. I work from home and take care of the house and Gab during the week, visit Ian in the evenings, then stay at the rehab center during the weekend so Mike can go home. We only have to do this set up for 2 weeks though, and one week is already down.
Ian’s next MRI is scheduled for December 21st. We’ll see oncology on December 23rd. Unfortunately, we didn’t get to plan it 3 months in advance like we normally due to what happened, so if we wanted a same day appointment, we couldn’t be seen until January. We decided it was in the best interest of Ian to do it this way so we can decide on a treatment plan. Our options right now are a MEK inhibitor, which is our preferred method. It isn’t a chemo, it’s a capsule that would tell the protein cells to stop dividing, which should target Ian’s specific mutation. But Ian has to be able to swallow capsules first. If he can’t do this, or possibly in addition to, he would start a weekly chemo treatment called Vinblastin. This is yet to be decided until our visit with oncology, but we’re ready for the fight.
I can’t thank everyone enough for their love and support during the scariest time in our life. We truly have an army behind us, and we can’t express our gratitude enough. Once we get back on our feet, we can’t wait to pay the kindness and compassion forward. For now, we hope our words and non-monetary actions are enough. Please continue to be kind to one another.
Thank you again from the bottom of our hearts,
Sincerely,
The Cogley Family
