Collin’s and Patrick’s Story: Don’t Turn Away

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Kathleen Henry 

I’ve stared at this screen too many times in the last week, avoiding writing this entry. It seems like a lot of pressure to tell my two little boys’ cancer stories in a way that will compel people to want to make a change. I mostly struggled with what to talk about. There really is a lot to say.  Today, I will talk about fear, this fear that consumes me on a daily basis.

My sons, Collin and Patrick, were diagnosed two years apart. Collin was 2 years and 6 days old when he was diagnosed with Acute Lymphoblastic Leukemia (ALL) and would endure more than 5 years of chemotherapy, radiation, a relapse, multiple surgeries and even now after the chemotherapy is done, he endures late effects from his treatments. Patrick was 6 when he was diagnosed, more than two years after Collin, with stage 2 Hepatoblastoma.

Both findings would rock me, and my family to our core. I often lay awake, watching them breathe. At one point, both boys were on chemotherapy, and they would make what I called a “mommy sandwich” out of me in bed by laying on either side of me, each holding a hand. I don’t think I slept more than two hours a night in those days.

When I laid in bed I often wondered how much time I had left with either, or both of them. My fear was that they would die, either in their sleep, or during some kind of infection, or even a reaction to a drug administered to them.  As hard as it sometimes is for me to see, we were lucky. Collin’s cancer was highly treatable and Patrick’s, though tricky, was caught early.

Patrick and Collin.  Brothers.
Patrick and Collin. Brothers.  Photo by Caroline Thomas

Yes, we were the lucky ones. Only, it didn’t feel like it.

Watching my son press the button on his pain pump over a hundred times in an hour after surgery, despite only being allowed so much of the blessed drug that would bring him peace, was gut wrenching.  Holding the bucket while my son vomited black bile every fifteen minutes for three weeks straight, only to have it start again with a new dose of chemotherapy that week, tore my heart out. Hearing their cries about how they were hungry, but nothing tasted good, pinning them to chairs and beds in the third attempt in an hour to get their ports accessed, usually both in one day. Hearing the phrase, “Mommy no, Mommy please,” over and over. That one still haunts my thoughts and dreams.

There are just some things that kids should never experience. Some things that mommies and daddies should never have to put their kids through.

That is all behind us now, the treatments. Yes, we were lucky. My sons are still alive. They are here to make me laugh. To squeeze my hand in the parking lot. They still want to snuggle, even after all I put them through. They still love me. The fear I felt during treatment was fear of what was to come. It always stemmed from fear of losing my sons….only the fears I experience now are too. Just in ways that I hadn’t yet begun to fathom.

I knew most of the ways that cancer could steal my boys during treatment. Infection. Side effects. Reactions. The cancer itself. These fears now, in some ways are even more sinister, because they sneak in and steal pieces of my boys, small at first, and then bigger chunks at a time.

Patrick has been off chemotherapy for nearly five years. That is kind of the “holy grail” of cancer accomplishments — everyone thinks of the five year mark as when a cancer patient is considered cured. Only, they never really consider a cancer patient cured, at least the oncologists don’t. Oncologists see it as, “the patient is less likely to relapse after that point.” You only really every achieve remission, not cure.

It is just this extended, perpetual, waiting game. Waiting for relapse, secondary cancers, late effects. Wondering if your child will be able to graduate from high school. Will they be able to have children of their own? How about a normal life?

I should be completely stoked about this five year anniversary coming up.  It’s a major milestone. Instead, I am terrified. Anniversaries tend to have a major death grip on those in the cancer community. They remind us of all we have endured, and what could potentially happen.

Patrick.  Photo by Jo Garvin of You're It Photography
Patrick. Photo by Jo Garvin of You’re It Photography

Patrick has few obvious issues when it comes to his cancer treatments. His scars are near impossible to see. The major issues he is facing now are cognitive impairment and high frequency hearing loss. He also has some gastrointestinal issues that we have yet to really figure out, but seem to be manageable, yet annoying and a constant reminder of what he endured.

Collin.  Photo by Caroline Thomas
Collin. Photo by Caroline Thomas

Collin, on the other hand, has continued to have a myriad of late effects that really only seem to be making themselves known in the last two years. At the age of 9, more than seven years after being diagnosed with Leukemia, he is just now starting to show signs that he can use the toilet independently. Up until a few days ago, he was still wearing pull-ups. The doctors told me that his rectum was no longer sending the signal to his brain to tell him it was time to go. TMI, I know, but hey, news flash: cancer and the treatments don’t just make your hair fall out.

In late September 2014, more than a year after his treatment ended, Collin suffered a spontaneous hemorrhage in his right frontal lobe. They don’t know why it happened, what caused it, or if it will happen again. Oh sure, there are theories. Most relate the bleed to some form of damage related to either chemotherapy or radiation, or both. Ultimately, they tell me it could happen again, and to watch him. I’m sorry, did you just tell me this could happen again?

The scariest thing is definitely that I don’t know if I can trust my instincts anymore. In the past I would never doubt that “Spidey sense” that was telling me to take the minion to the hospital or call the doctor.  Now, more than seven years later, and too many unnecessary visits to the hospital and doctor to count, and I just don’t trust my instincts. Even when Collin had the brain bleed, I thought that I should take him to the emergency room, but I doubted myself and convinced myself that it was just a fever and headache.

There is this insane inner dialogue in my brain. “He’s fine, stop torturing him with all these doctor visits!” “NO! I missed that last thing and it could have killed him!” We were fortunate that he woke up the next day. So now the fear is, will Collin wake up tomorrow? Recent testing has shown that another part of his brain is damaged, also likely due to the radiation. His pituitary gland is not functioning properly. He is not growing and is losing weight. So much weight, that the boys size 6/7 pants and shorts that he fit into earlier this year, are now falling off of him. He’s lost enough weight that the doctors have taken notice, and it is what prompted the tests to see if his growth hormones were low. They were. Now we add another doctor, and another issue to the list. The most recent MRI of his brain showed damage where the bleed was located. The blood has reabsorbed into his brain, but there is damage, it’s manifesting in the form of ADHD tendencies.

He went to bed one kid and woke up another, which has been a huge struggle for our family, and really difficult to digest. I recently told our sons’ oncologist that I was scared because I missed this bleed, so I didn’t trust my intuition anymore. I don’t know what is panic worthy, or what is me just being a paranoid mom of two cancer kiddos. I am terrified I will miss something really big again, and I will wake to find that my son, or even my currently healthy daughter, are dead.

I am afraid I will miss it mostly because for so long and in such a short amount of time we have had so much. Way too much, a lot of which looked really benign to their regular doctors. And honestly, there was a lot that just didn’t fit the mold. There were times that had I not pressed the issue, even more things would have gotten missed. But there have been a lot of times that I just look like a hyper-aware mom, and probably a little neurotic even.

Google is not my friend, Google is not my friend. Say it with me moms!

In reality, Google is what told me the kind of cancer that Patrick had, before the oncologist could spit it out that day. There’s a fine line between vigilant cancer mom and insanely neurotic and traumatized cancer mom. I am learning each day, even years beyond treatment, how to navigate that line.

My sons’ oncologist tells me that he wants to offer reassurance, and not go overboard with scans and tests when weird stuff comes up, but that my kids scare him. Did you read that? MY KIDS SCARE THEIR ONCOLOGIST! They don’t fit the mold, and they have not followed the “cancer rules” thus far, so it is hard to guess what will happen tomorrow, or in five years.

Be gentle with us, with me.  Know that we feel crazier than we look. And when you really want to say something, but have no clue what to say, a simple “This sucks,” works wonders.  “We should do something for the childhood cancer community!,” is HUGELY appreciated.

I need to feel productive, like I am actually doing something to fight for my boys, and all the other kids that have fought and will fight childhood cancer. You could, too.  Get involved, write to your representatives in government, speak up!

Don’t turn away from the scary and sad pictures of these kids. There is so much more to childhood cancer than cute little bald kids. The reality is that when, and if, these kids do survive, there is a lot going on with them once the treatments stop. This is reality for the rest of their lives for these kids, for my kids.

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