Enter God...

"Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with. all your heart." ...Jeremiah 29:12-13

Last week I gave a brief look at how I learned of our daughter's diagnosis and what it felt like from my point of view. Let's continue that journey.

The very following day after finding out her diagnosis the surgeon, god bless him, called us via Zoom. Over Zoom he would explain more about Wilms tumors and more directly related to Adeline's case. He showed us the pictures from the CT scan that she had received. Her tumor had completely deteriorated her left kidney to the point there was almost nothing left. The tumor was 9.1 cm which was actually larger than her right kidney.

He explained to us that he would go in and remove the tumor and whatever kidney was left because there was no way to salvage or use what was left. He outlined the risks for us. As with any surgery, there are risks, but when you hear them out loud for one of your babies it kind of freaks you out. I grabbed onto Erika's hand as we listened. She had started to cry hearing all of it, I think on the inside I was ready to cry too. It was so much to listen to and so much to take in. I think I probably held on to her just as much to keep me from crying as it was to be there for her.

He explained that one of the difficult parts would be getting the tumor out whole. You see when it breaks or bursts it immediately puts them at stage 3 and then it has the possibility of spreading faster. Also if it is found in their lungs then they are automatically diagnosed as stage 4. (So do you remember when I told you last week that we probably shouldn't have been pushing on her "spleen" like that, yea this right here is why.). He said that Wilms tumors have a tendency to just fall apart as he lifts them out but that he would try his best. (By the way, this guy is amazing, if ever your child needs to have surgery this is definitely the guy you want.)

Now that we got the scary stuff out of the way let's fast forward. The surgery got scheduled for June 1st. It goes by quickly, doesn't it? Literally less than 7 days prior we found out about the tumor and then BAM! she is having surgery to take it out. So we had very little time to prepare for anything. Thankfully Erika's mom was able to take off work so that Erika and I could both stay at the hospital post-surgery. So that was one tick. Also very thankfully Chris and Nevaeh were old enough to be self-sufficient and take care of themselves for the most part. I'd just like to highlight how amazing they both are. They have each taken everything that we have had to go through in stride. They have been so flexible and understanding with everything.

So now we have the basics figured out so that we can get her to surgery and stay with her during her recovery which they tell us is going to be five days or so. So as we are prepping for the surgery Erika's uncle offers to do a blessing on Adeline. Erika tells me that this has been done a few times before but specifically, she had. an ailment when she was young that was cured after having a blessing done by him. So we drove over to his house and met with him and his wife. They were both so loving and caring and just very gracious to us.

So we are there to receive a blessing from him and we sit and talk for a while. He explains to us that he is just going to rest his hands on her and then he is going to speak his blessing. He explained to us that what he says when he does these blessings is just what God is trying to say through him.

So let's pause for a second and I'll give you a brief history of my relationship with God. Since I was a boy I have had a very back-and-forth relationship with God. One-sided of course since God is always there waiting for you when you're ready. As a boy I was sent to a Pentecostal church, yes sent because my parents wanted peace and quiet on Sunday mornings. During that time I came to know God and was baptized. Eventually, I left that church and moved away and let my relationship with God fall by the wayside. Many years later I met a really amazing couple called the Tuvesons who inspired me to attend church again. At that time I was truly in it with God, going to church every weekend, reading the bible (slowly but surely), and I even felt the pull to become a pastor and become a chaplain in the Army.

Of course, this didn't happen as I let life distract me and I walked away from God again. Again many years pass and now we are caught up to us getting a blessing from Erika's uncle.

So I am sitting in a chair in front of her uncle and I place Adeline on my lap. Erika is to my right and grabs my right shoulder. Her uncle stands up and places his hand on Adeline and begins speaking his blessing. I don't know every word but what I do know is that the holy spirit was present in that room. As he spoke I felt my whole body start to relax and tingle and then I felt, to me what felt like a hand, on my left shoulder. Physically, goosebumps spread all over my body. When we were done and in the car, I mentioned it to Erika and her mom and we all instantly knew that the holy spirit was there. (As a side note, in the past when I was allowing God to be present in my life I had felt this before when I would worship and pray to Him. The tingly feeling and the feeling of complete calm would just wash over me. But nothing to the extent of physically feeling someone holding on to me.)

Two days later we sat in the hospital waiting. We didn't pray at least not out loud. We watched as they gave medicine to Adeline that would calm her down and make her tired. We watched as the nurses laughed as our daughter lost coherency. For them this was normal, they see it all the time. But seeing my daughter not be able to speak or function was really a terrifying experience. I knew what was happening but even still it scared me and made me worry that she was ok.

Oh, how I seethed with anger as the nurses laughed. The poor thing would try to talk but couldn't get the words out, couldn't find the words, and couldn't speak them. For a brief moment I hated those nurses, I hated that they had forgotten what it was like the first time they saw a child look like that. I hated them for not putting on my parents' glasses and seeing her as I was seeing her. She was just a little girl who couldn't move, who kept trying to tell us that she needed to potty but could barely speak, could barely move or function. Then they wheeled her back to the room where she would have surgery.

To put it clearly, just typing this brings tears to my eyes. I remember so vividly what she looked like at that moment and my being powerless to help her. I think that's the hardest part, being so powerless. The quickest way to bother most men is to make them feel powerless. Some might not agree but I hate feeling powerless, I hate feeling as if I can't help in some way.

That was that. Erika and I were left alone in the room to wait, to wonder what was going on. They said that we could go get breakfast at the cafeteria and that we could walk around to stretch our legs. They said they would call our phone after about the first hour to give us an update. We couldn't think of doing anything else but sitting there waiting for her to be back in our reach.

The Tumor is Gone!

We received two calls before we were told she was headed to the recovery floor room. The first call said that she was doing fine and they had started. The second was to tell us that everything was going well and they would be done shortly—two calls over several hours of waiting and worrying. Once we got to the recovery area the surgeon came back to tell us how it all went.

"Went better than could have been expected. We were able to get the tumor out intact, with no damage to her renal artery or vein. All in all, this was a picture-perfect surgery."

You probably couldn't have seen more weight lift off two people's shoulders hearing those words. God had watched over her and protected her. So fast forward a bit to the recovery stay. I'm going only to highlight a few things. First thing is that within 24 hours she was sitting up in bed asking to eat lol. Within 48 hours she was getting out of bed taking steps and sitting in other chairs. Within 72 hours she was walking around the hospital floor telling the nurses, "I'm makin smoothies". (There's a whole story behind this. Long story short, there is a video of a dad mimicking his teenage daughter and that is one of the lines from the video.)

One of the nurses who was taking care of her actually said, "If this isn't the best recovery I have ever seen then it's the second best."

We couldn't believe it, she was so strong and resilient. I know that Erika and I both couldn't have been more proud of her. Also a little sidenote, her surgeon stopped by every day to check on her. He even came in on Saturday in a pair of shorts and a t-shirt to check in on her. This guy is amazing, he was quite literally made to do this job. If this man hasn't found his calling then I don't know who has.

So we finally make it home much to the delight of Chris and Nevaeh who were just happy to have their baby sister home and see her doing so well.

The following week after getting home we headed to Siteman's to meet with the Radiology Oncology team to discuss her radiation. She was to have six treatments of targeted radiation. So there we had it, six radiation treatments and chemotherapy to treat this terrible disease.

First Chemo Session

That same week we had her first chemotherapy session. I want to briefly explain what this is like, to be clear it has gotten a bit better now that we have done it so many times. But I want to highlight this because it is important that others see and feel what we are seeing and feeling.

We enter the hematology/oncology clinic for the first chemo session. The waiting room has two sides one on the left and one on the right. Both sides have people waiting. There is a sense of where do we sit so that we are not impeding on other people. How close do we get? She may not be immunocompromised yet but some of these other kids might be. Even still we are weary because if she gets sick with her port it could lead straight to her heart.

Some kids seem like Adeline seems, healthy - if you didn't know what they were there for. Others convey the message that cancer seems to want to spread. They look frail, they've lost their hair due to the chemo, and some just look so tired. Actually come to think of it while cancer is the culprit that we are trying to get rid of, most of the symptoms you see are from the chemotherapy medications. So while they help, the message of frailty comes from them. We are currently pushing for a petition to be signed to get more than 4% of federal funding. The name of the petition, No More 4 Our Kids Need More!

We are called to the back where they take Adeline's vitals and then place us in one of the many assigned stalls. Most arent actual rooms just sections of the room separated by curtains to maintain at least a minuscule form of privacy. This is our first time so we didn't know how big the space was in each stall. Our first one was barely big enough for the three of us to be in. Erika went to the main waiting room just so that Adeline could get accessed.

What does accessed mean? Well, the port that they placed under her skin is a direct line to her heart/bloodstream. From my limited understanding, it is an easy way to hook her up to IVs each week to receive her medicine versus having to poke her in the arm each week.

So to access her you have to put a lidocaine cream on her port area about 45 minutes before they access. They do this to numb from the poke they are about to give. Since this was our first time we had the child life specialist there to try and distract her and I sat in the chair with her on my lap so that I could hold her so she didn't move. She's smart though and saw it coming as soon as I put her on my lap and instantly started crying and screaming. No amount of distraction can prepare her for getting poked in the chest.

I know that there is plenty of women who do the same thing, especially in scenarios where their husband has to work or they are just single moms doing the same thing. But as a husband, I feel that it is my duty to weather this storm. I'm not saying that Erika couldn't do it, of course, she could. She is one of the strongest women that I know. What I'm trying to say is that as a husband, and as a father, I feel it is my duty to exert my strength and courage to my spouse and children. I feel that it is my honor to be able to show them this and share it with them in a meaningful way. By being brave in moments like this, being the rock of my family, I impart strength to them as well. They see my strength and gain strength in return and they receive no small amount of relief knowing that I am there for these moments.

Some might call this chauvinistic or antifeministic but I call it being a man. I call it for what it is, sharing my strength with those that I love. But if I cannot shoulder the weight of this how can I expect them to?

So they access her port, she now has an IV-like adapter attached to the port under her skin and it is held down with the tape-like substances they use to hold it to your skin. Once she is accessed Erika comes back and sits next to Adeline and I stand and move around to fit the needs of the nurses who are treating her. I am going to skip to the end because these details have already been shared on her group's Facebook page. Adeline finishes receiving the medicine and they come to remove her port. So what this entails is me placing her on my lap again and then the nurse comes in with a spray that helps remove the adhesive and starts spraying. Adeline, of course, is going hysterical because she hates the way it feels as those adhesive bandages are pulled off, I mean who doesn't right?

So all of this is done and they place a bandaid over her port where they just pulled the needle out. Following this, we are allowed to leave and she receives a small prize from a prize cabinet. By the way, the infusion center is always in need of donated toys, books, cards, whatever for refilling so if you ever have it in your heart to donate some new stuff for kids with cancer there's your chance.

That's the end of what chemo looks like. But I also want to highlight for just a second being on the infusion center floor with all of the other parents and children and nurses. First off, it amazes me that they call childhood cancer rare because each week each of those stalls is filled. They are pushing families in and out of those stalls at pretty regular intervals all day long. The nurses I want to highlight because they are all just so amazing. Each one of them is so nice and caring towards the kids and the families. But in each stall you see kids of all ages fighting for their lives, fighting to get better. Some are sicker than others, some have more severe forms of cancer while others have milder forms. But what they all have in common is their strength, and their resolve to get better.

I think for now that is all I am going to highlight this week. I put Enter God... as the title because this is where it began. Getting the blessing from Erika's uncle was the first time we handed anything to God in that way. Since that moment we have learned to hand all things to God because he can handle them. He makes our burdens light.

"Come to me, all who labor and are heavy laden, and I will give you rest.29Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.30For my yoke is easy, and my burden is light." ...Matthew 11:28-30