It’s been 40 days since Ian has been home. 40 days of learning to be patient. 40 days of learning how to not let anxiety completely take over our lives. Living day by day. And when that became too much, living moment by moment.
But are we living? Or are we currently surviving?
I think it’s the latter, but life keeps going. It stops for no one. In order to feel like we are doing more than just merely existing, we try to find happiness in each day. Some days were, are, and will be harder than others. But we still try to live each day with a grateful heart. We didn’t lose Ian like we thought we were going to on day 3. (Not what the doctors said, just a feeling that overcame the sleep-deprived, fearful, and anxious parents.) ((Okay, it was more me than Mike, but that’s not the point.)) The point is, we were given more time with him, and in the end, that’s all we want. More time to love on him and let him know how much we love him and how special he is.
Ian was moved to Children’s Rehab center almost 2 weeks ago now. When we got there, Ian wasn’t doing much. He couldn’t eat or drink anything by mouth, his voice was still hoarse from the breathing tube, he had extreme weakness on his right side from the mini stroke caused by the hydrocephalus and brain bleed, he couldn’t move much except to squeeze our hand; he was overall just weaker and now physically and mentally behind.
Fast forward to today, after a lot of hard work, Ian is starting to be able to eat and drink on his own again. He’s still having some trouble with liquids and chewing for long periods of time, but we’ve been able to get him to eat enough calories that he no longer needs to be fed through his feeding tube during the day- only at night now. He’s also on what’s called a moist/minced diet, and he eats a lot of pureed foods at this time. (Essentially baby foods)
His voice has also come back, and although Ian isn’t quite talking like he was before, he is doing so more and more each day. We’re seeing him starting to form sentences again, some of his “phrases” are coming back, and it seems like he hasn’t “forgotten” anything, but more so is just having some trouble getting the words out. But this should improve with time, as it has been.
With one sided weakness comes a lot of physical disability. Ian has to relearn how to use his arms and legs, but especially on his right side. He has to relearn how to walk, stand, sit up, grasp, etc. Ian actually got fitted today for a right sided leg brace to help him because he’s having a hard time stabilizing his right ankle and knee. This will help Ian be able to focus on our two main goals of standing and walking.
He also has to relearn fine motor skills, which he already struggled with. Before the brain injury, Ian was working on holding on a pencil for school. Now, that has to be put on the backburner as we relearn how to just hold things in general. He has to relearn hand-eye-coordination, although this has also gotten much better since we’ve been here.
The rehab center also works on recreational therapy, so things like music and art, are part of his healing process. They also have a teacher here who has been in contact with Ian’s school to see where he left off at in their lesson plan and to get him caught back up.
Our days are full and busy lately. Ian typically gets one whole hour of each therapy- a half hour in the morning and a half hour in the afternoon. In between sessions, Ian normally naps. All of this has taken such a toll on his little body. But we heard from the doctor today that Ian is still on track to be discharged on November 22, which would mark 6 weeks of rehabilitation.
I feel like I haven’t even had time to feel to know what I’m feeling. If anything, I feel numb. Our days are so busy, there’s just no time to sit down and process emotions. I think I like it better that way though. At least sometimes. I’m not always good about handling my emotions (hence why I started my blog in the first place). With us still waiting for biopsy results, which we are thinking we should have this week or next week, staying busy helps me focus on what’s important in this moment. Which is Ian getting stronger and taking care of him, Gabby and us. If I had time to “feel,” I can guarantee it would be filled with anxiety and fear of what this could be. And what good does that do me? It doesn’t change the outcome to worry about it now. Don’t get me wrong, there is worry. Any parent who gets unfortunately put in this situation don’t do anything but worry, but it’s more manageable when I put my energy elsewhere.
This little boy is my hero. There is so much being demanded of him right now, and there’s only so much a young child can understand. Ian realized before his brain injury that he was different. He realized he had a port on his chest and none of us did. He realizes he goes to the doctor a lot. And he realized something was wrong on September 15 when we were at the doctors for the second day in a row. When Ian woke up from his coma, he was scared and confused. With good reason. It was important for us to keep explaining why he was there, which we have kept it at “Your brain is sick.” But we also told him that everyone is here to help him and that he is safe. Once he understood the latter, he let our amazing medical team do what they need to do to get him better.
Childhood cancer is cruel. To be clear, I am defining cancer as clumps of cells forming masses where they don’t belong. We would get told that it’s “good” that Ian’s tumors were diagnosed as benign. Do you see now why it’s still bad?
Nothing about this journey is “good.” Ian had to be on chemo for a year because his “benign” tumors grew. One of Ian’s tumors doubled in size in 3 months. That same tumor hemorrhaged and caused a number of problems. And even when things were considered “stable,” we had to worry about seizures. We had to have 3-month MRI scans. We’ve had to see a half dozen specialists. And now, even if the biopsy miraculously comes back low grade, we have all of this on radar forever now. More hemorrhages. Knowing his tumors, his cells, his mutation that causes it all can all mutate into something else. Something scarier. I will forever live in a constant state of worry and anxiety.
Childhood cancer has affected all of us in a way I never imagined. I never thought I would be the mom who has to go through this. That my child would be the one who has to go through this. We share Ian’s story to bring awareness to the realities of childhood cancer. Because if we don’t, how will things ever change?
Childhood cancer only receives 4% of funding. That’s ALL childhood cancers combined: brain tumors, leukemia, neuroblastoma, rhabdomyosarcoma, bone cancer, etc. I just named you 5 different cancers, which means each of these don’t even see 1% on an individual level. Our. Kids. Deserve. More.
I’ve heard “this is rare” more times than I wanted to. It’s rare to have multiple benign tumors like Ian was originally diagnosed with. It was rare to not be able to remove those tumors with surgery, given our diagnosis of DNET, whose treatment plan is surgery. It was rare for us to treat it with chemo. Google search it- you won’t find any information on treating DNETs with chemo because it just doesn’t happen. We were told it’s rare for low grade tumors to hemorrhage, but it can happen. We were told it’s rare for low grade to randomly mutate, but it can happen. We are always told that childhood cancer is rare, but yet here I am writing this out. 46 more parents will be told in a given day that their child has cancer. And I can name you 2 other kids in our hometown alone who have their own cancer battle, including my nephew, who’s in remission for, yet again, a RARE type of leukemia. Maybe in the grand scheme of things, this is rare, and a majority of kids won’t receive a devasting diagnosis. But there are still one too many kids who have, and one too many kids who will. We need to fight for them.
I have never felt more helpless than I have these last 40 days. The cold, hard truth is that I can’t save my son. I have to rely on our medical team to save him, our spirit guides to work a miracle and protect him, and most importantly, I pray Ian doesn’t grow too tired to keep fighting…
While I am grateful for everyone who has helped him, this is still HIS fight. And I won’t let anyone take that away from him. He’s fighting this. He’s the one taking the hardest punches. And he deserves to take the credit for making it as far as he has.
Although I’ve felt helpless, I’m also reminded of how blessed we are. When Ian was first diagnosed in 2019, when I heard he had multiple tumors, I thought for sure that meant it was malignant and had spread. I thought we were going to lose him soon. But we got an extra 3 years with him after that. I thought we were going to lose him 40 days ago, but we got an extra 40 days with him, and counting. I can hold his hand, hug him and kiss him when he’s scared, and remind him that I’m there and he’s safe. We have a roof over our head and food to eat. We have an army behind us (all of you) making it possible to focus on Ian getting better. I can’t thank everyone enough who has helped us financially and emotionally. We are eternally grateful for the kindness we have received, and we are already looking forward to the day we can give back and pay it forward. Until then, our hearts are here with Ian, and we’ll be here to support him in any way he needs us.
I ask that everyone share this, or some other post, to shed light and spread awareness on childhood cancer. Change starts here. With us. All of us.
#PrayerChooChooForIan #ChampIan
