Remission

Good morning everyone and welcome back to StrodeDad. Thank you for following these last several weeks and if you are new I encourage you to take some time to read some of the older entries as well as this one.

Dear Lord, thank you for the wonderful gift you have given me. The very air in my lungs is a gift. Thank you for your love and mercy. I ask today that as I write you guide my thoughts and fingers in the direction that you want them to go. I want my readers to feel your power through my journey. In all things, you are great, in Jesus' name Amen!

Wow, what a roller coaster of a month this has been so far. First, we got to see Adeline ring the bell. What an amazing feeling, what an amazing site to see. It feels like such a long road to get to this point and when you finally make it, it kind of feels like a dream. Is it all really happening? Last week I had a reader reach out to me and say that she understood what I was discussing last week as it is the same thing she is feeling right now about herself. I won't include her name but if she is reading she knows who she is. She told me that she was getting to ring the bell, this past Wednesday. So in light of that, I want to say.

CONGRATULATIONS on ringing that bell!

I know that there are a lot of emotions and questions running through your mind. I know that there may even be fear of what the future holds since re-occurrence is a thing. But I want you to know that you aren't alone in those thoughts and fears. There is a whole slew of people feeling what you feel, whether through personal experience or through secondhand experience. You are never alone so don't be afraid to talk about it. But even more important, you are never without God.

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid." (John 14:27, ESV)

The point of sharing that wasn't only to say congratulations but to point out that we weren't alone in our thoughts, fears, and anxiety. We know that we are never alone because God is always with us. But we are also not alone because thousands of other parents and thousands of other people are going through or have been through what we have.

A question that is asked a lot in the WILMs tumor groups is, how do you not regress? How do you move forward? How do you shift from the mindset of worrying about everything to worrying about less than everything? Tough question to answer if you ask me. The answer is to trust in God, but somehow even when we trust in Him we still ask the question. Is this a representation of a lack of faith or just our humanity?

So Adeline rings the bell, then ends up in the Emergency Department the very following morning. Thankfully nothing comes of that. So now we get to the 16th of December. What a special day this has become. We go to the hospital for CT and an echocardiogram. We are there early, everything seems to be moving much quicker than we imagined so we end up home by noon. Unheard of in the world of hospitals and appointments with multiple medical teams but somehow God manages to get us through the morning quickly.

Now we are home and because the radiologist hadn't read the images yet or signed a report the doctor was unable to give us any news while we were there. We expected as much even though deep down we still hoped that it would have happened. So now we are waiting.

Waiting...

And waiting some more...

Ahh! The waiting is killing us. It's driving us crazy not knowing what the imaging said. I know there are many out there that have been in this same boat. It is so frustrating to have to sit around patiently waiting for them to call with the results. All the while you are questioning, why is it taking so long. Did they find something and they are having to review it more? Is that why it's taking so long?

What made it even worse is that Erika, the future women's ministry leader at our church had to prepare for the women's ministry Christmas party. She was getting food ready but she had to be at the church by 4 pm. At 3 pm I called the oncology clinic to see if the results had been put in the system yet. They tell me that the radiologist has signed them but that the doctor still needs to review them.

Ugh! More waiting!

The time drips ever closer to 4 pm. The closer it gets the more anxious we both feel. Not only does Erika have to go to the party to set up but the clinic closes at 4:30 pm. 3:39 hits and we are starting to lose hope that we will get the results before she has to leave. Suddenly my phone rings. It's the doctor with the results from the echocardiogram and CT. He gives me the results and explains a few things. Erika is listening as best she can from a few feet away and quickly motions for me to ask, "does this mean she is cancer free?"

So I ask the doctor flat out, does this mean she is cancer free?

"Yes, I would consider her at this point to be cancer free and in remission."

Erika burst into tears and I'm doing everything I can, not to do the same while on the phone with the doctor. With my voice quivering, I tell him thank you and end the call. Through tears, we tell Chris and Nevaeh the fantastic news. The worst part is that we are both in tears when they come down so what's your first instinct when you know that results are coming in about her cancer and you see your parents crying? Your first instinct is to think that it's bad news. The first thing Chris said was, "wait is it good news?" Bless his heart. As Nevaeh came down the stairs we shared the wonderful news and both of them seemed so happy.

Then the round of calls to direct family members before posting for the rest of the world to see. Wow, what a ride huh? What a way to enjoy this month. We have so much to be thankful for and now we have this as well. God is so good. Let's face it folks without God none of this would be possible. I look back and see every instance of God at work and it just blows my mind.

What I really love too is how many people from our church called, texted, or messaged to check on us. We love our church family so much! Before finding them we always had our family call and check on us, that's always been enough. We had never really met anyone outside the family that cared enough to check. But now we have this whole other second family that cares and calls and checks on us to make sure we are doing ok. It makes us feel loved, it makes us feel at home there. We haven't been able to go for fear of Adeline getting sick in the final weeks of her treatment. It's been hard. We watch from home sure but it's not the same. We miss the feeling of getting to worship with everyone surrounding us doing the same. We miss seeing people face to face instead of over Facebook.

You hear that Copper Creek we miss you! Also thank you for everything, thank you for letting us jump in and join you in worshipping our God. Thank you for accepting us as part of the family and loving us as much as we love all of you.

We miss seeing our family too. We haven't gotten to really see them in the last several weeks because we wanted to protect Adeline. I can't wait for Christmas when we will all be together. (Enjoying that deliciously smoked brisket I'm making.) But we miss them so much and it will be nice to be able to spend a day with them without worrying whether one of us will get sick and pass it to Adeline. So you hear that, bring the stretchy pants family because it's almost brisket time.

So now she is in remission. But what does that mean? Do we get to go back to some semblance of normal? What is normal anymore? Erika and I talked about this the other day. How do we get back to normal? How do we transition from being worried about every cough, sneeze, stubbed toe, or scratch? She still only has one kidney, what if she fell in some way that damaged it? What if while playing soccer she takes a tumble or worse gets hit by the soccer ball? It's happened to me why couldn't it happen to her?

She starts school next year. Oh school, the petri dish of society where germs go to grow. We know what's coming, sickness. Sickness is coming probably in waves since it's been so long since any of them have been to public school. It's going to be scary the first time any of them gets sick. Our mind will wander back to taking her to the doctor right before we found out she had the tumor. God is with us, we know this. We still worry. Lack of faith or just humanity?

I look at the scripture and read about David and think how do I have so little faith? David had gone through so much. A good portion was brought on by his own doing but some of it was not. Through it all even while sleeping in caves surrounded by his enemies he still trusted God. He knew that God would deliver him. Psalms 142-145 are great examples of David's prayers to God. So if David can pray in a cave and know that God will deliver him no matter how bad it gets, why can't I pray and feel easy knowing that he will deliver us no matter how bad it gets? Lack of faith or just my humanity shining through?

Remission. What does it mean? I try to look at others who have been in the same position we have and are thriving to this day. Erika's cousins have been where we are now. I'm sure they have felt a lot of what we are feeling right now. How did they move on, how did they get to the point where they are all just such awesome people who are enjoying life? I don't know yet but I aim to ask.

I look to God. I look to Him for answers and guidance. I found the first bible ever gifted to me the other day. It was a King James Version bible presented to me by the Edwardsburg United Pentecostal Church youth group on November 17, 2002. A note on the first page said, "Always remember Proverbs 3:5-6!" I looked it up and I definitely needed that reminder. I definitely needed to see that this week.

"5 Trust in the Lord with all your heart, and do not lean on your own understanding. 6 In all your ways acknowledge him, and he will make straight your paths." (Proverbs 3:5-6, ESV)

Does this mean that I won't fear, does this mean I won't question? No, it doesn't. I will still fear. I will still question what does remission mean for us? Why, because I'm human or because I have a lack of faith? I don't know the answer to that question. Maybe it is both. Maybe I need to have stronger faith but despite stronger faith being human means always having to process the things going on in my life that I don't understand.

I will get there eventually I'm sure of it. But I want to get there and feel ok with doing things. I want to feel ok with taking Erika out on a date and not having to worry if Adeline is at home running around and possibly falling on her port. I want Erika to be able to sleep at night and know that she doesn't have to worry for just one night. I want us to be able to go to the park as a family and not worry about every possible germ that could be on the equipment. I want Adeline to run around, play sports, be adventurous, and play with other kids.

Remission means all of these things. It also means scans every three months to check for re-occurrence. It means always wanting to make sure that Adeline is healthy. It means deep down fears that any sickness is more than what it really is. It means having to teach Adeline that she is more than her past sickness and that the world that seemed to revolve around her and only her doesn't. It means Adeline learning to be around other kids and listening to teachers and learning what disappointment is when she doesn't get what she wants. By that I mean, she's gotten a lot of attention the last several months, and probably will for a few months more. It's going to be a hard transition for all of us.

Remission and cancer free. Something so beautiful. It's been so rainy the last several days and kind of gloomy outside. Now as I sit here and write this I see that the sun is up and shining down on us. God is so good.

The way forward will be hard. Changing an entire mindset at the drop of a dime is definitely not within my wheelhouse. Adeline is ready, in her mind Christmas day is the start of her new cancer-free life. She gets her port removed on the 22nd and then we figure to rest for two days and then play with all the gifts Santa is bringing her. But for her, it will be the first day in a long time that she can get up and run without us worrying. If she slips and falls sure it might hurt but there isn't a lot of risk to it. For her in her own words, "I get to be a kid again." For us, it's the first test of a new life we get to start living. Will we pass? That remains to be seen.

But as I dwell on these thoughts I also dwell on the fact that there are others out there that are still working with God to battle this disease. Some others out there have to spend Christmas in the hospital getting treatment instead of at home with their loved ones. For those that are facing that Christmas, I want to tell you that you are loved and thought of. God is with you, he is mighty, and his love for you is endless.

5 Your steadfast love, O Lord, extends to the heavens, your faithfulness to the clouds. 6 Your righteousness is like the mountains of God; your judgments are like the great deep; man and beast you save, O Lord. 7 How precious is your steadfast love, O God! The children of mankind take refuge in the shadow of your wings. (Psalms 36:5-7, ESV)

Thank you for taking the time to read this today. Thank you for taking the time to try and understand what remission means to me. Thank you for coming back each week and partaking in my thoughts. I pray that you find something in them that helps or sticks with you and that you share that with me and with others. I love comments so please don't be afraid to share them with me. If you don't want to comment and just want to message me feel free to do so on Facebook because I'd love to hear from you, good, bad, or otherwise. Have a blessed day. Until next time...