Missing Numbers

Hello, and welcome back to StrodeDad. Thank you for taking the time to read this today. I hope what I write today impacts you in some way and allows you to see a tiny peek into what it's like to be a pediatric cancer parent. Let's say a prayer and then get started.

Dear Lord, thank you for today. Thank you for allowing me to be and allowing me to take in the splendor of the world you provided us. Lord, please grant me the wisdom to know what to write today. Please also open my readers to whatever message you are wanting them to receive. Thank you, Lord, for all you bless me with, including the chance to write today. In your name, I pray, Amen.

Alright, let's get started. So if you have been a StrodeDad reader for a while, you probably know mostly what's going on, but if you are new, here is a quick recap for you.

In May 2022, my daughter was diagnosed with stage 3 WILMs tumor. The tumor had attached itself to her left kidney and consumed about 90-95% of her kidney. She had that kidney removed, and her surrounding lymph nodes had been found to be cancerous. At this point, she received chemotherapy and targeted radiation for the next 5-6 months. In December 2022, she was deemed in remission and finished with treatment.

In December, she also had scans to identify any concerning masses, of which there was only one. The mass, however, was so small that they couldn't tell if it was a cancerous mass or just a swollen lymph node. Due to its location near the lungs, the doctor wasn't concerned because, typically, they do not find WILMs tumor there. Fast forward three months.

In March of 2023, she had her first post-treatment scan. These scans are to ensure that no new growth is occurring. On this scan, they found that the mass that had been so small before had doubled in size and was now attached to her lower right lung. They quickly got her in for surgery to remove the mass and biopsy it. Once the biopsy was complete, they identified that the mass was WILMs tumor-related, and that meant she had relapsed.

Relapse, especially near the lung, meant more intense treatment. The doctors decided that she was a great candidate for a trial treatment that combined two different treatments into one. This was effective because the combination of the two treatments worked well together. Also, because they are given in combination with one another, they can give the patients smaller doses which lowered the overall toxicity to less than just taking either one by itself. She would be part of the trial. She would also receive targeted radiation to her lungs.

What else this meant was that she would have to have surgery to have her port placed back in her chest. New treatments, and new medicines, also meant different risks. One new risk associated was that the new medicines she is receiving will force her into early menopause, most likely as early as the age of 18. To save her chances of having kids, the doctors recommended removing one of her ovaries, shaving it into layers, and freezing those layers to use later to help her have children.

So if you count them up, she has had a total of four surgeries with still one to go. She has completed chemo and radiation of her stomach once over the course of seven months and now has started a new chemotherapy trial and is four months in. She has a total of ten cycles for this trial and has completed five so far. So she is halfway done with chemotherapy and has completed radiation on her lung and chest region.

Heck of a recap, isn't it? I think it sums it up all pretty nicely. I mean, that is a short and sweet summarization of what our little girl is going through. But let's face it, that summary doesn't do justice to the pain and fear she experiences each cycle. That summary doesn't do justice to the fear, anger, hurt, and anxiety her mother and I experience each cycle or the days in between. It doesn't do justice to her brother and sister and the pain, anger, and fear they face each cycle or the questions they ask themselves about what could happen to her.

You know, I try really hard to keep this blog clean and family-friendly, but sometimes you just feel the need to curse.

F*ck, this is so hard!!!

It's so hard to watch your entire family struggle through this. It's so hard to struggle through and know what to say and when to say it. It's so hard to see the fear in everyone's eyes every time her temperature starts to rise. It's so hard to hear her sneeze or cough and not jump to the conclusion that she is sick and at risk of dying if we don't get her to the ER fast enough. It's so hard watching her get so angry and upset because she has to leave her family for days at a time to go receive chemotherapy. It's so hard to hear her say things like, "I hope I miss numbers this week so I can have extra time with Mommy!"

She has five cycles left, and all she wants to do is miss numbers to stay home with Mommy. What's missing numbers, you ask? Well, let me explain that.

So on top of everything else she has to have done to her, she has to go to receive labs two times a week. Sometimes this can be three, like this past week. She goes to receive labs so that they can check her numbers. So if you ever hear Erika and I say her numbers weren't good, this is what we are talking about. The lab results give us her white blood cell count (WBC), her hemoglobin (HGB), her platelets (PLT), and her absolute neutrophil count (ANC). So why do these things matter?

Well, if her hemoglobin is low, she will need to receive a blood transfusion. When she gets low hemoglobin, she starts to get tired, she gets headaches, and she loses color in her face, especially in her lips. When her platelets get low, she starts to bruise very easily; if she were to start bleeding, she could die because the bleeding wouldn't stop; she can also get nose bleeds randomly as well as her gums would start bleeding. With the WBC, it's just important to know what that count is at. But the ANC that's an important one because it tells us if she is neutropenic or not.

Neutropenic means that her neutrophils (a type of white blood cell) are very low. So low, in fact, that it makes her immunocompromised. This means that someone who is nearby her and has a common cold, she could end up in the hospital struggling to fight off something that she should be able to fight off on her own. When her ANC is below 500, that makes her neutropenic. When her ANC is below 750, she cannot receive chemotherapy. This is because chemotherapy kills all cells. It doesn't just target the bad ones but instead kills any and all cells that reproduce quickly. So if they give her the chemo when her ANC is below 750, it would be very hard on the body. The same goes for platelets, she isn't allowed to receive chemotherapy unless her platelets are 75 or higher.

Adeline had cycle five the weekend of June 23rd. This means she should have already had cycle six. However, the week she was supposed to get cycle six, her numbers were so low that she was still receiving platelet and blood transfusions. So they pushed her back a week. That means she should have gotten chemo this week starting on 21 July. Monday and Wednesday, she went to get labs. On both days, her numbers weren't good enough. Normally we go Monday and Thursday, but on chemo weeks, we do Monday and Wednesday. So they had us come in Friday on the off chance that her numbers came up high enough that she could receive chemotherapy.

They hadn't. Her ANC was just a little over 500. Her WBC was 1. Her HGB was 8.9 (that's good, by the way). And her platelets were 59. So remember, she needs her PLT to be at least 75 (we are at 59), and her ANC needs to be 750 (we are at 544). What does this mean? Week two of missing numbers for chemotherapy. Now some of you may be thinking, well, isn't that a good thing? She gets a little break from it. And sure, yes, it is nice not having to go back into the hospital. I'm not gonna lie, I'd much rather be home than at the hospital. But the thing is, Erika and I would just much rather her make numbers and go to get chemo.

We want to be done with this. We want her to be done getting this awful treatment. We want her to be done with hospital visits and arm pokes. We want her to be able to start school before January. We want her to be able to start Karate again. We want her to start being a five-year-old who gets to run, jump, kick, tumble, fall, or whatever she wants to do without worrying that if she falls, she could crush her port or dislodge it, resulting in another surgery. We want her to do all those things and not have to worry if her platelets are low and that if she falls, she could start bleeding and it not stop or get internal bleeding.

We are so tired.

I am so tired.

I am tired of being afraid.

I am tired of being angry.

I am tired of being sad.

I am tired of stupid f*cking cancer.

So missing numbers, it's great. Missing numbers means a few extra days with Mommy. Missing numbers means a few more nights that I get to sleep next to my beautiful wife. Missing numbers means prolonged treatment. Missing numbers means not getting to start school on time. Missing numbers means possibly not getting to trick or treat. Missing numbers enough times means possibly spending the holidays over Zoom with the family that would love to see us. Missing numbers means having to hope that chemo doesn't fall on the birth of our baby boy Hudson.

I want to be there the day he is born. I want to be there to hold my wife's hands as they take Hudson from her body. I want to be there to hold him after he is born and take pictures of Erika holding him.

When they say cancer ruins your life, they don't just mean physically. Cancer reaches into every corner, every facet of your life, and ruins it all. It takes everything you have away from you.

F*ck cancer man.

I know, I know, I've cursed three times in this blog entry which just isn't normal for me. I'm feeling it today. I'm feeling the anger. I'm feeling the frustration. I'm feeling the worry. I'm feeling the sadness. I'm feeling the pain of what cancer brings, what missing numbers brings.

The Bible says, "Cast all your anxiety on him because he cares for you." (1 Peter 5:7, NIV)

Our God cares for me. He loves me despite my fears. He loves me despite my anger. He loves me despite my sadness.

Please, Lord, allow me to lay those feelings at your feet. Please, Lord, give me rest.

"Come to me, all you who are weary and burdened, and I will give you rest." (Matthew 11:28, NIV)

We joke around a lot and say that I take on too much. I work full time, I write this blog and sometimes podcast for it, I help run One Ribbon United, I go to school full-time double majoring, I take care of my family, I take Adeline to chemotherapy (Erika can't because the chemo is so toxic it could hurt the baby to even touch Adeline's bodily fluids), I just recently wrote for a magazine, I do all the things. My plate is about as full as it can get.

Do you know what the scary part is, though? I could fit more on there. And sometimes, it feels good to think about adding more. It's easier for me to be doing all the things than it is to stop and think about what Adeline's diagnosis has done to her life, done to all our lives. It's brought so much pain but also so much goodness and inspiration.

But sometimes the bad can feel overwhelming, so having a full plate and wanting more is understandable. Sometimes even though I can feel overwhelmed in a day or exhausted at the end of it, at least it's better than thinking about how much longer we have for the chemo treatments.

I pray every day and ask God to give her strength and heal her. I ask Him every day if it would just be ok for me to lay down my anger, fear, sadness, and pain at His feet. And every day, I ask for His forgiveness. I ask because I know that sometimes I assert my will before allowing Him to assert His own. I ask for forgiveness because I am scared, because I am fearful. I shouldn't be, knowing that He walks with us and has Adeline in His hands. No matter the outcome, Jesus is with her; Jesus is with me. So why should I be fearful? But He understands; He knows that I can't help it; He knows that no matter how many times I say it that I will still end up being afraid, and I will still end up asking Him for forgiveness for it.

So do I overfill my metaphorical plate? Yes, I do because that is sometimes easier than facing the reality of pediatric cancer. I do what probably 90% of dads do.

If you're a pediatric cancer dad, do you do the same thing? Do you fill your metaphorical plate until you can't fit any more on there? Do you struggle to face the reality of pediatric cancer, so you keep yourself as busy as possible?

I do.

And to be honest, sometimes it's not enough. Sometimes I wish I had a barn that I could go out to, a forge to light up, and an anvil and hammer to pound some metal. Or even a range that I could just go shoot for a few hours.

I take refuge in Jesus, but sometimes it's just nice to be busy.

But that's missing numbers. Missing numbers means a longer treatment time frame. Missing numbers means low counts. Low counts mean possible transfusions. Missing numbers is great while simultaneously being awful.

God has a plan, so we will keep on praying. God has a plan, so we will submit ourselves to His will and go where He wants us to go.

Give me your thoughts on it. Are you a pediatric cancer parent? Does your child missing numbers mean the same to you? Are you a plate filler like me? Let me know, I'd love to hear from you.

Dear Lord, thank you for letting me write this today. Thank you for blessing me with the time to get these thoughts and feelings out so that others may benefit from them. Lord, I pray today for the families struggling through pediatric cancer. Please give them strength, Lord. I pray they will turn to you, Jesus, and lay their burdens down at your feet. I pray that they will take refuge in you, Lord, and that your will be done in their lives here on earth as it is in heaven. Thank you, Lord, for taking care of me and my family. In your holy name, I pray, amen.

Thank you for taking the time to read this today, don't forget to comment, like, and share as much as possible.

Until next time...