Cycle 6 Fever

Hello, and welcome back to StrodeDad. I am happy to have you here reading this week's entry. I appreciate the time you are taking out of your day to read my story and understand what my family and I are going through. Let's take a minute to pray, and then we will get started.

Dear Lord, thank you so much for today. Thank you for giving me life and allowing me to take in the glory that is the world you have provided us. Lord, I ask today that you deliver through me whatever message you ware wanting my readers to receive. Please open my readers up to your message and open them to understanding what it is like to be a pediatric cancer parent. Please, Lord, guide me as I write today and allow me to express my thoughts and feelings in a constructive way. Thank you, Lord, for your love and glory. In Jesus' name, Amen!

Oh boy, did that feel good? I don't know about y'all, but when I say a prayer, it just feels really good. There is just something about communing with the Lord that just makes me feel better. I know it draws me closer to Him when I do, and I appreciate Him all the more for it.

But as for me, it is good to be near God.

I have made the Sovereign Lord my refuge;

I will tell of all your deeds. (Psalm 73:28, NIV)

So the last few weeks since my last post has been a little rough. Adeline had been previously missing numbers which meant her counts were too low to get chemotherapy. For nearly three additional weeks, she couldn't get chemotherapy. Finally, on Monday, July 24th, her labs came back, and she had made counts. This meant that she could finally do cycle six of her chemotherapy.

Cycle six was going to be different than the other previous cycles because Adeline would receive three of her five days of chemotherapy outpatient. Typically she has to be inpatient for her entire treatment, but this cycle doesn't require that, so the doctor felt that we could go ahead and start on Wednesday the 26th since she had already missed so much time.

If I had to say, I feel like this was most definitely her best cycle to date. She didn't throw up during the entire five days of her chemotherapy. She was able to take all her nausea meds as tablets instead of liquids which helped her tremendously. Normally there is this sense of anxiety from her, but during this cycle, she didn't have that at all.

Praise God for her lack of anxiety during this cycle. He was able to give her peace that she doesn't normally know during chemotherapy.

The Lord gives strength to his people;

the Lord blesses his people with peace. (Psalm 29:11, NIV)

So we get through the five days of chemotherapy pretty easily, which is definitely the first time since starting this journey. We actually get through all five days and carry her nausea meds for forty-eight hours after her last chemo day. This was pretty typical, it always seems to work, and by the third day, she is usually fine without any more nausea medicine. However, this time was a little different. She woke up on the third day and started vomiting. After several attempts to have her keep various nausea medicines down, we ended up having to go to Children's Hospital to get her some IV nausea medicine. Once we did that, she was right as rain again.

Normally this kind of episode would set her back about three or four days of not eating or drinking anything. However, she seemed to do really well after that and kept on eating and drinking. All in all, cycle 6 wasn't that bad.

So we continued the week as normal, getting her labs on that Wednesday while we were at the hospital for the nausea meds. What they said was that her platelets and blood were dropping and said that she would most likely need blood on that Friday before the weekend. What we ended up doing was going up there to get labs done, and then when they came back, she needed both blood and platelets. This turned into an all-afternoon affair. We ended up not getting home until a little after six pm that night.

So what we notice is that when she has to get blood and platelets together, she ends up running a mild fever. Pretty much from the time we left the hospital and all night until the next day, she was sitting at 99.5 degrees for her temperature. This isn't terrible because it's still low enough that we don't need to go into the ER. But what it does mean is checking every one to three hours to make sure it isn't getting any higher. So we wake up Saturday, and it's like any other day except for taking her temperature, which still seems to be floating at 99.5 until about lunchtime.

Suddenly around lunchtime, the fever started to fluctuate up. Now mind you, we can't give her Tylenol or anything because if it's an infection of any kind, it could mask that. So we are left in suspense. Erika and I like to plan ahead, so I packed a suitcase in case we needed to go. Why pack the suitcase, you might ask. Well, Adeline was neutropenic, which meant she was immunocompromised. Being immunocompromised and having a fever means an automatic stay at the hospital. So I packed enough clothes for four days and prepped everything just in case we needed to go.

And, of course, we ended up needing to go. She hit 100.5 two times in one hour, so we had to take her. I take her to the emergency room, and they do the standard checks. They draw blood to do cultures and check her numbers. Once they find out she is neutropenic, they order us a room up on the 9th floor. They also start her on broad-spectrum antibiotics. She stays on those antibiotics until she leaves. And remember, she can't leave until those counts come up, and she isn't neutropenic anymore.

So now we are getting close to catching up to the present day. Adeline and I come in on a Saturday, and we start spending every day there, hoping that her numbers start to climb. While we are there, she gets invited to an event where they are issuing a grant to one of the amazing doctors there from Hyundai Motors Hope on Wheels. It's a really great nonprofit organization started by some dealerships on the east coast that has grown to include all the dealerships across the country. They donate funds to doctors for research to help fight cancer. We were really honored to be there for the ceremony, and Adeline even got to put her handprint on the Hope On Wheels car. It was pretty awesome.

During this time frame, her numbers have started to rise, albeit very slowly. But we are grateful they are going up at all and just excited to be getting closer to going home. The next day after the grant ceremony, Adeline is asked if she would like to see the St. Louis City Soccer Club players. Adeline has never played soccer but loves it. She can't wait until she gets her port out and joins other kids her age playing soccer. So when they asked her this, she got really excited to meet some actual soccer players. So later that day, they come in, and she is speechless, which is cute to see. She ends up getting a picture with them, a scarf, and a signed picture, and last but not least, she ends up for a fraction of a second on the news. How cool is that?

But then something happened that I kicked myself in the butt for tremendously. The next day after that, she started getting a runny nose. At first, I was in a naive hope that it was just allergies bothering her. All day long, I'm wiping her nose, or she is wiping her nose, and it is just poring snot. Then evening comes, and she starts running a fever. I could have kicked myself so hard at that moment. I couldn't believe I let her be around all those people while she was neutropenic. We are normally so careful, and I dropped the ball. I didn't just drop it; I fumbled it in the freaking red zone and let the other team recover.

Erika was understandably upset, not at me, just upset that Adeline wasn't feeling well. She was scared. We both were. This is the first time she was actually sick while being neutropenic. So after the first night, they did blood cultures, and her temp peaked at 101.8. I was nervous because this was or at least felt like my fault. They swabbed her nose the next day and found that she tested positive for rhinovirus. Essentially she had gotten a common cold, but it was so much stronger because her immune system was so weak.

How could I be so stupid? How could I have let this happen? What if this gets worse? All these things kept running through my head, not to mention that if something did happen, I was the one to blame. Erika would blame me; our family would blame me; I was the cause. I just kept praying that she would start to feel better. I kept praying that God would take her in His healing hands and she would start to feel better. I asked God for forgiveness.

"though he may stumble, he will not fall,

for the Lord upholds him with his hand." (Psalm 37:24, NIV)

We are nearly caught up to the present day. Presently I'm still here sitting at children's hospital. We have been here for seven days. We have been here a week, and still, we aren't sure when we will get to go home. Just this morning, Sunday the 13th, her ANC is at 15. Her fever broke just last night, and she still has a mild cough. When will we get to go home? I'm not exactly sure. What I do know is that I'm grateful that her fever finally broke. I know that I'm going to keep praying that she gets the boost to her numbers she needs.

She is technically supposed to be starting chemotherapy for cycle 7 on the 16th or 18th (usually, it's a Friday, so the 18th). But her numbers aren't there yet, and to be honest, we have been here so long I'm ready to just go home, hug my kids and wife and take a day away from the hospital. Would I be grateful if she made numbers just in time to stick it through and start cycle 7? I absolutely would be. I want to go home, but I also want to keep moving forward in her treatment. I want her to make numbers so we can get cycle 7. I want her to keep making numbers so we can hit 8, 9, and 10 on time and finish before Hudson arrives.

I want to be there for the birth of our son. And I want this chapter of our book to close. I want Adeline to be done with treatment and be cancer free. I want her to be so cancer free that she never has to do this again. I want to worry about the scans that happen every three months instead of worrying about neutropenic fevers. I want to wrestle with impatience while we wait for the results of those scans instead of worrying whether she is going to miss treatment because her bone marrow is too weak.

I am so fed up with this journey that I don't even know how other people do it longer. Our friend Jennifer has been doing this for over three years. I know that the only way she could have lasted this long through it all is because God gives her strength because, quite frankly, I can't even imagine what the last three years have felt like for her. Sometimes I read our situation as I write and think to myself, "Man, we have it so much easier than others."

This week I watched a little girl have to go to the ICU because her body was failing due to the toxicity of her chemo meds. What's worse is that those same medicines that were making her body shut down and causing her to cry out in pain are the same medicines our daughter is on. When does it end? When does this cycle of children getting hurt without a cure end? When do we devote everything we have to giving our kids the best treatments instead of ourselves? I just want to say "D*mn you" to the government, which only spends 4% of federal funding on childhood cancer. I want to say "D*mn you" to the public who is so willing to spend money on sports memorabilia so that their teams can pay their players millions of dollars each season.

Think of it this way, if we took the salaries that we pay sports players and gave them above average salaries of even, say, $200,000 a year and took the rest of that money and put it to funding for childhood cancer research and development, what would it look like? A quick Google search shows Justin Herbert of the Los Angels Chargers gets paid 52.5 million dollars a year. That means that if he were getting paid an above reasonable salary, like, $200,000, 52.3 million dollars a year could go towards research and development of a cure for childhood cancer. That is one player. One player could provide that much. Now think of how many millions, if not billions, of dollars could be devoted if every sports player made more reasonable salaries.

Blows my mind. It blows my mind that we can't get more. It makes me angry. It makes me want change. It makes me wish that our world would wake up and stop putting themselves above others. Where does it all go when you're gone? Nowhere because God doesn't let you bring it to heaven, and satan doesn't care how much money you made in this life.

"This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers and sisters." (1 John 3:22, NIV)

This verse sums it up quite nicely. When do we all start loving each other enough to put someone else first?

Sorry for my tangent there. It got pretty heated in my head. I probably could have gone on for ten minutes of writing, at least. But in all seriousness, it has been a long week. It has been a long week away from my family, and I don't know when it's going to be over. I want to say that I'm sorry to the parents and families that have to do this longer. I'm sorry to people like Jennifer who have struggled for so long and continue to fight through it. I'm sorry because you deserve a medal. You deserve so much more than I can ever even mention. And most importantly, for people like Jennifer who have placed their lives in God's hands, I want to say that you are loved. You have devoted yourself to His will, and I applaud you. I hope that I can always do the same.

Let's say a prayer and wrap this up.

Dear Lord, thank you for everything that you give us. You sacrificed yourself so that we might have eternal life and forgiveness of our sins. Thank you, Lord, for your love and mercy. I pray today, Lord, that those parents who are going through this right now can find you. I know that we are feeling angry. I know that we may be feeling lost, alone, and afraid. And because I know this is how we might be feeling, Lord, I ask for your strength. Please, Lord, lend us your strength and love. I pray for the families that are right now battling those feelings and fighting to find a brighter future ahead. Please, Lord, continue to guide us and show us that even though we are angry, afraid, or maybe even lost that you are still with us. Thank you for always standing ready with an outstretched hand, waiting to pull us from this hole. We love you, Lord, and ask that you fill us with your holy spirit and guide us through this life until we reach the next. We love you, Lord. In Jesus' name, Amen!

Thank you for taking the time to read this today. I hope that you learned a little more about what it's like to be a parent of childhood cancer and what it means to get through it another week. I hope you enjoy this week's entry, and until next time...