The Beginning

Hello and welcome to my inaugural post on StrodeDad. First I want to say thank you for coming and just taking the time to read this blog. I decided to start this blog in an effort to share my side of our story. I wanted to give a brief view into the perspective of a father, husband, man, and man of Christ living through childhood cancer.

Typically you will find that the mothers are sharing and connecting with the childhood cancer communities. They will share their stories with one another and connect in ways that we men just can't really fathom. I have seen my wife connect with so many others. She talks, communicates, shares, and cries with people as she reads or listens to their stories. In some ways, I become envious of her because of her ability to meet new people and share the feelings and emotions they have in common regarding this experience.

I think that there is a very standard view that men are the tough ones and that they cannot cry during times of anguish or distress. That is the way we are raised and while that disposition seems to be changing as newer generations are growing up and raising their kids differently we are left in that mindset. I've talked to a few other men who have shared the experience of having a child with cancer and they have all said they don't remember crying. Looking back they wish that they would have taken the time to do so. Why not be vulnerable in front of those that love you the most?

So for anyone who cares to know my story, my side of the situation, and the man's perspective here goes nothing.

When you find out the news!

So what follows is a little background to the situation, where it all began so to speak. This week I think we will stick with what the beginning was like and move from there week by week.

This journey started as a normal doctor's visit. Adeline, my four-year-old daughter, had been feeling sick. Typical cold symptoms plagued her and wouldn't seem to go away. Erika, my wife, and I decided it was time for her to go and see a doctor. You see we were having her birthday party soon and if she was sick then we needed to reschedule or cancel. Just for clarity purposes, this is in May of 2022. Her first doctor's appointment was the first week of May.

After a typical doctor's appointment, the answer we got was Mono. All her symptoms presented as mono and the doctor said, "Yes we need a blood test to be sure but I've been doing this a long time and I can tell you that it's mono." You see she had chills, stated her side/stomach was hurting, had constipation, and after checking had white splotches on her throat. The doctor also checked her abdomen and stated she felt that her spleen was swollen. The doctor even had me push on it to feel what she was feeling. Little did we know then that was probably not the best idea. (If you are wondering why I'll recap to this later)

Given an antibiotic and orders for a blood test Adeline and I left. Erika hadn't been feeling well so I had taken her by myself. No big deal of course. The doctor told me to get the blood test the following day and come back in two weeks for a follow-up. This made us come back one day after her birthday on a Thursday. The next day we did the blood test and no mono. A call from the doctor confirmed it and she said "well the spleen will sometimes swell for just a normal viral infection." That was that; we told her no physical activity so that she didn't rupture her spleen and had her party the Sunday before her birthday.

Her birthday party came and went, then her birthday came and went, and Adeline and I went back to the doctor's office for her follow-up. During the appointment, the Nurse Practitioner said that she still felt her spleen and went and checked with the doctor. The doctor scheduled us an appointment with the hematology clinic at STL Children's Hospital the very next day. So we left that thinking were just going to get some blood tests done the next day. Again, little did we know.

Since Erika and I had no clue and she still wasn't feeling the best, due to allergy problems, I took Adeline to her appointment at the hematology clinic. When we first got up to the 9th floor I saw on the door that it said Hematology/Oncology clinic. I thought this was a little odd but figured well hematology is still blood tests and that's who we are going to see.

We got to the back and met with the doctor. He did a similar checkup that her normal doctor did. He felt her abdomen in the same way but this time he said that he didn't think it was her spleen and he wanted an ultrasound. This probably should have been the first red flag but Adeline was prone to be constipated so in my head, this could have just been an impacted bowel or something. So we went down to the radiology clinic on the first floor and got an ultrasound.

Oh man, this was where it started to get to be long. At this point, we have been at the hospital for at least an hour or two and now we are in a tiny room getting ultrasound pictures of her abdomen. Adeline is being very awesome and sitting there letting them take the pictures. For nearly two hours we were in the ultrasound room getting pictures taken when finally the technician said she was done and left the room to check to see if there were any more pictures the doctor wanted.

Now, mind you the entire time I am texting Erika as we go trying my best to keep her informed. The questions are rolling in and I am answering them as best as I can with the little information I have. As you start to question what's happening, how do you relay that to the person you love most in this world? How do you tell her that you are starting to question why you've been there for this long?

The technician came back in and said she had some more pictures to take. So Adeline being the trooper she is climbed back up there and let her take the pictures. The technician left again and meanwhile I tried to reassure Erika that we were ok. It was roughly 5 pm at this point. Again I try to maintain a brave face for both Erika and Adeline both.

Suddenly there was a knock on the door and it began to open. Two gentlemen were standing there in scrubs. I assumed, incorrectly of course, that they weren't aware that we were in the room. The two men entered and began to introduce themselves. The larger of the two men, larger in stature and height because he must have been at least 6'3" or 6'4" maybe even taller, was primarily talking. The next words he said, I will never forget. "So I'm sure the oncologist has told you about the tumor."

As a man, you want to say that it didn't phase you, that you were unbreakable. I was, I didn't burst into tears at that moment, I didn't start screaming or anything but I can assure you I was stricken to my core. A tumor? A tumor meant cancer! A tumor? How could it be a tumor? Oh god, how was I going to tell Erika? How was I going to get her the news, not over the phone? What was going to happen next? All I had ever seen of cancer was the movie scenes that we have all seen of people with cancer looking frail, sick and vomiting, and worst of all on their deathbed. My god, would this be my little girl?

I tried my best to breathe through the coming tears, they were there on the edge of my eyes, waiting to burst forth like water from a broken dam. The surgeon said that he would be the surgeon to take out her kidney and the tumor. What, there is more? Not only does she have a tumor and probably cancer but she had to have surgery as well. She had to have her kidney removed? What would all this mean for her? My head is just flooding with all of these thoughts, I'm barely able to listen to what he is saying and comprehend it.

Then he told me that he wanted to get a CT done of her abdomen but wasn't sure it was going to happen that night because it was already a little after 5 pm and going into a holiday weekend. The amazing team there made it happen thank goodness. But let's fast forward a little bit to leaving the hospital because that is the next important part.

To this point I haven't told Erika because again, how do you tell her that over the phone? So Adeline and I are approaching the car and I am buckling her in when Erika calls me. She took the choice right out of my hands. Now the choice is either lie to her over the phone or break the most heart-wrenching news over the phone. I'm trying to climb into the car and Erika is asking me, "What is going on, why aren't you answering your texts." So like a total buffoon I say,

"Well it's not terrible, it's not like she is dying or anything but...she has a tumor on her left kidney and they called it a Wilms tumor"

What was I thinking? Looking back I felt like such a fool. I still feel like a fool for saying it in the first place. My heart was breaking on the inside as Erika started crying on the phone. Here I had just delivered some of the worst news I'd ever have to give her and I did it over the phone after saying something like, "it's not like she is dying". Fast forwarding through that conversation, I am driving home. Adeline is so focused on her tablet that there is complete silence save for the music that I am playing on the radio. At that moment I have only my thoughts to keep me company and to dwell on.

How was this going to change her life? How did I feel about it all? How was I going to comfort my wife? How was I going to be strong? (There it is, how am I going to be strong? That taught thought process of what it means to be a man. What about, how am I going to deal with this? What about, what will happen if I don't express my emotions about all of this?) How was I going to hold it together for them? How would Chris and Nevaeh, my now 15 and 13-year-old son and daughter, take it? How would I comfort them and help them to understand that it would be alright?

I didn't cry at that moment, my one moment of being alone with my thoughts about it all, and I didn't take the time to let it out. A mistake that I look back on regretfully. The whole ride home I thought to myself, how will I ensure that everything is okay for them? Never once did I stop and think about how will I handle all of this on the inside.

Shortly after I got home and Adeline went to bed I took Erika into my arms, placed her head on my shoulder, and let her cry. All night long she held it together so as not to scare Adeline. Chris started crying at one point but then composed himself. Since that time we have tried our best to tell him it's ok to let it out, that just because he is becoming a young man doesn't mean he needs to hold it in. So I held Erika in my arms, reassuring her that everything would be ok, telling her to let it out. She cried and I held her until she was done.

She would do the same for me of course but that's not what she needed right then, what she needed was her husband to be a man, the rock, the foundation of the family. So that is what I was. She did not fail me in any way, I knew that I could cry with her but that is just not how I was raised, not how we were taught to be men. Neither of us failed at that moment. At that moment we were just a man and a woman, a husband and a wife, and parents who were now the parents of a child with cancer.

Thank you for reading the first entry in what is sure to be many more to come. Until next week...