You know how that 3rd trimester seems to draaaaag on? How you can see the finish line, but somehow it seems to take sooooo much longer than the prior 30 weeks??
That’s what it feels like going into this last 10 weeks of chemo treatment. The closer we get, the heavier and harder it gets. And, in actuality, he really only has 8 more weeks until his last chemo, and the final 2 weeks are labs only followed by final scans. At some unknown point, he will have surgery to remove the little port that is implanted into his chest and connected to a major artery in his neck. So even though it’s 10 weeks, it’s technically less but it seems sooooo far away.
Three more. Three more overnight stays actually sound so much longer now than it did 2 weeks ago. I am just so ready for this to be over. But I also know it won’t really ever be over.
I am well aware that the final three main hospital admissions for VAC cycles are so emotionally, physically and mentally draining. They are hours of labor, sleepless nights, waking every hour or so and strategizing how to handle the side effects when the medicine is no longer effective. It's like running a marathon, and I have never run one because of the mental endurance. So although I look forward to getting them done, I also equally dread them.
Right now I feel like I am trying to swim to shore when I am caught in a riptide. I see the shoreline but I am TIRED. So, so tired. I can't imagine how Evan feels.
I'm complaining. I know. And I never see Evan complain. I should learn from him. And yet, I know how blessed we are to be able to say that his tumor had a complete response to chemo after just NINE weeks of chemo! I do not take this blessing for granted. But it doesn't make the process any less...crappy.
It’s so hard to explain to a beautiful tiny voice that asks “Mommy, if the tumor is gone, why do I still have to get chemo?”. Somehow I have to encourage him that as hard as it is physically for him, it’s “for his own good” so that we catch any of the cancer cells lingering in his body. That stopping chemo before the specific amount of cycles have been administered isn’t an option.
That every time we have a hospital admission, he immediately asks before the appointment even begins “We go home? I want to go home!” He knows what’s coming, and I can’t do anything to protect him from it.
When he feels chemo run through his veins and it makes him sick, he yells at me with anger and tears in his eyes, “this is why we never sleep at the hospital! I want to go home!” and all I can say is "I know you are mad. I would be mad too. I am so sorry."
This is the only way to get him healthy enough to live, but he doesn’t understand the magnitude of his disease. So he gets mad that he has to go through it and I hate that I can’t do anything to change that for him.
In all of this, I do reflect on and realize that WOW! He has a magnificent story to share about his healing! And ironically, this has also healed my hear in ways I never knew needed healing. It is an answered prayer for the deepest longing of my heart, in which at times I found myself terrified of the possibility of it not being answered, even while holding on to the faith that God is good. But he is NED (No Evidence of Disease, and that’s a miracle.
Some may say, “it’s what chemo is supposed to do. That’s science, not miracle. “ Chemo SHOULD cure cancer….EVERY TIME. But it doesn’t.
Our first oncologist in Houston said “it’s either 0% or 100% odds” when we naively asked “what are our chances of beating this?” And we didn’t even realize that 100% can mean that there is could be “dead” cancer tissue left and/or the likelihood of a lifetime of side effect. That if there were to be any tissue that’s left behind (which is more likely that not with this cancer) after treatment, that it can’t be confirmed if it’s truly dead tissue and you only watch to see if it stays the same, shrinks or grows. I know many parents in this scenario. That’s terrifying.
I have realized that not many children achieve NO EVIDENCE of Disease, and the rate of relapse for Rhabdomyosarcoma is anywhere between 20-35%. Most kids with inoperable tumors will still have a residual dead piece of tumor left, which can’t be removed, and those parents are afraid that this “dead tissue” is actually just a dormant piece of monster cancer cells that can wake at any given moment and wreak havoc physically and emotionally and spiritually on the cancer child and the family. That it would start over the nightmare. At. Any. Given. Moment.
When you are in the thick of it and see so many parents lose a child to cancer around you-- to the same type of cancer your child has-- you realize that even with statistics, it’s truly either 0% or 100% chance of survival and those numbers are hard to swallow as a parent.
Most oncologists will hesitate to say “cured”. And the irony is, you won’t know if your child is “cured” until they have managed to live another 3 months, 6 months, 1 year, 5 years, and now 10 years in remission, free of any cancer. In the meantime, parents fearfully wait and hope there is no relapse in their child at every scan, every 3 months then every year after several years. They are living with an inexplicably high yet valid level of anxiety every day that doesn’t go away. And this time, they are without the "security blanket" of having chemo treatments to kill any of the cells. It's a time where they cling to hope and faith that their child's body won't fail them and will have cells divide as they are supposed to. And we will be entering that stage in a matter of weeks. I am nervous on how I will cope with the transition.
Every day that my son lives is a blessing. Now, as we near end of treatment, I am more aware of how we will always be tuned in to the slightest symptoms and how our hearts will race every time they complain of minor pain or discomfort. Because we have had bumps along the way where we were terrified of relapse and were told by doctors it’s just “inexplicable“ swelling; either a side effect from radiation or a foreign object in his eye that can’t be washed out without our help because his lacrimal gland was damaged by radiation.
Every small bump on his body has to be inspected and monitored to make sure bug bites or bruises heal and that the bump gets smaller. That won't change after we are done with active treatment. Everyday we will have to be on alert for other side effects from radiation and chemo. I will have to learn to live with an elevated level of real fear and anxiety as my BASELINE. I will have to learn to calm the anxious voice in my head and train myself to not jump to respond with immediate fear. That will be my new norm.
When he is done with cancer treatment, we can’t just get back to normal, as much as I wish we could. The old has passed. Being done with the treatment plan means that he is done with chemotherapy and radiation. But it doesn’t mean that he is done with all the scans and check-ups. Being done with treatment does not mean that he is guaranteed to be back to the health he had before cancer. Being done with treatment does not mean that we won't have to deal with long term side effects like 95% of the other kids who survive cancer. Ending treatment is more like transitioning to a new norm, where cancer, even if in remission, is still very much a part of our lives.
This is something I didn’t realize until being a parent to a child with pediatric cancer: It’s not over at End of Treatment. It just transitions. And I am completely unaware of what to expect. so I leave my anxieties in a box on the shelf, tackle the last few weeks, and know I will learn to navigate those when I get there, much like I learned to navigate life as a mom with an amazing warrior child.
It’s a life I never imagined I would be living, but I will always cling to my faith and pray for the strength to accept God’s will, no matter what. That when Christ says ”Ask and it shall be given to you” (Mathew 7:7) that he will grant me the desires of my heart: for Evan to live a long and joyful life that is pleasing to the Lord and a life that brings Him glory. And for blind faith in my soul and to always sing and proclaim, even amidst the trials, "It is well with my soul."