Day Eighty-four

Place your faith in God, not religion.  Ask yourself honestly if your allegiance is simply to good moral habits and churchy routines, or if it's directly to God. Rather than placing your faith in believing and doing what's right and then relying on your own efforts to try to accomplish it, place your faith in God, trusting Him completely to lead you and empower you to follow where He leads you.


Invest in relationships over rules.  All of the world's religions except for Christianity urge their followers to try to climb a stairway to heaven, striving to please God through their own efforts.  But Jesus showed us that God is reaching down to us with His love, and that's the only way God and people can truly connect.  Recognize that, even though you're flawed, you're also forgiven.  Accept Jesus' invitation to live a life of freedom by pursuing a relationship with Him rather than trying to follow religious rules.


Just do what you can.  Religion constantly pushes you to do more, but you can't ever keep up.  By contrast, God calls you to simply do the best you can with the opportunities He gives you to grow as a person and serve other people.  So release yourself from the pressure of religious agendas and make yourself available to God, just doing the best you can for Him each day and trusting that He'll use your efforts to accomplish His will. 
 "Breaking the Rules: Trading Performance for Intimacy with God"   Live It


Ryan did well today at the hospital!  Mirjan got there at 8:00am (give or take ELT measurements), and got everything in order.  I left work about 9:30, and Ryan was in the prep room playing on the iphone.  He then went and drove the scooters for another 30 minutes.  He thought it would be fun to play hide and seek with me, so he did.

When it was time for him to go in, we walked to the end of the hallway with him, prayed over him, and told him we would see him soon.  Mirjan and I then went to the waiting room for about 1.5 hours.  Here is a picture of her in the courtyard as we waited.

After a while, Mirjan said she had to go to the bathroom, but didn't want to be gone when Ryan came to.  I told her to go, and sure enough, the nurse called us.  I went back and Ryan was just waking up.  The nurse then promptly informed me that "mother" was taking my place by Ryan's side. :)  So, she came in, and I went back to the waiting room.  Shortly later, Ryan was wheeled into the recovery room.   We were there about 20 minutes, and he was cleared to go.   Mirjan took him home, and I went back to work.

The nurse called the house this afternoon and talked to Elise.  She said that the CT scan looked great!  Thank you, Lord!   She said that Ryan didn't need to come in tomorrow, but he most likely will need a transfusion next Friday.  Mirjan said she is going to do a directed donation for him.   The nurse also said that they will call tomorrow with the MRI results.

Father, thank you for watching over Ryan today during the treatments at the hospital.  Thank you for great results from the CT scan! Your healing power continues!  I am thankful and humbled.  I ask that you continue to provide strength and comfort for our family and heal my little boy.  In Jesus' name I pray.  Amen.

Day Seventy-nine

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you."  Psalm 32:8

Ryan is doing well today!  Thank you, Lord!  He stayed longer at the hospital, because he was completely drained.  They discharged him, but he still stayed another couple of hours because he just wanted to sleep.  He didn't get sick last night, but he was sick multiple times this morning.  Mirjan had a long night and was worn down today.

Ryan was able to get the CT scan today, so we're praying for no signs of cancer.  He is scheduled for an MRI next Friday, since that will be his first week without chemotherapy since he started this journey.  He will get a CBC next week, and we're also praying that he won't need a transfusion.  We did talk to the blood and tissue center about direct donations, and Mirjan is planning to go on Monday. 

Pops, Mama Elise, and Davianna went food shopping this morning, while Emma and I held down the fort.  I put Emma down for a couple of naps today, we had a hot dog lunch, and then relaxed.  When Ryan got home, he looked very tired and rested on the couch for a couple of hours.  Then Mirjan, Davianna, and Emma tended to the garden, while I picked the crabgrass weeds.   I'm not sure what Mirjan's mother planted, but we have a lot of stuff growing.  We had a great dinner that was prepared by Pops and Mama Elise, and then all but Mirjan and Emma went for some ice cream!

Ryan was full of energy tonight!  He really looked good compared to most Saturday nights after a big treatment.  It was really comforting to see him like that.  He still didn't eat much, but at least his spirits were high.  He prayed a nice prayer and was playing with an Iron Man power-hand as he went to sleep.  Davianna and I read a book, and then she went to sleep quickly.

Here are some more pictures from the collection of cameras snapping all of the time:

Ryan when he arrived at home today!  He was hitting his balloon up in the air.

Father, thank you for comforting us as Ryan went through his treatment at the hospital. Thank you for the safe treatment, Mirjan's strength and love for her son, and minimal side affects.  Thank you for Ryan's energy this evening and his high spirits.  We are grateful and feel your blessings.  I ask that you continue to guide us through this journey and that you continue to heal my little boy.  In Jesus' name I pray.  Amen.

Day Fourteen

"Sing to him, sing praise to him; tell of all his wonderful acts." 1 Chronicles 16:9

Note: I realized that I am not capturing all of the details of this experience.  I can't imagine how many calls, emails, facebook messages, texts, etc. that Mirjan has received. She has shared a few with me that have really touched our hearts. There have been calls to other family members, emails and calls among the church family, and much more that I only see a glimpse of.   God's love is on display, and this is only a fraction.

Rhabdomyosarcoma
Type: Embryonal
Stage 1: Based on location
Group 1: Based on localization
Radiation not required.
Chemotherapy starts tomorrow.

Thank you, God, for the test results that we prayed to you about!

Today moved along painfully slow. The cat scan didn't take place until 11:00am. Ryan had to drink two glasses of "magic juice" 1.5 hours before the scan. He also had to have the IV started at 6:00am. Mirjan got here just in time to walk down for the scan.

Just like every other test, shot, surgery, and medicine, Ryan had no problem with the cat scan. The disney stickers one the machine were a nice touch, and it was the first thing that he noticed. He did ask if it could shoot him through to the other side, and was a little disappointed that he would only go through slowly. We were only down there for about 5 minutes, and then we went back to the room for lunch.

Mirjan went to the cafeteria and brought me some lunch, while I stayed with Ryan. She takes care of everyone and the way she shows her love everyday is wonderful. I am truly a blessed man to have Mirjan in my life.

Ryan took a nap after lunch, and I tried, but couldn't...I just wanted to know the test results. Social services came in and provided more resource information. Mirjan was playing a game on her phone...she thinks that she can beat me at any game, and she gets close, but she has to practice ALOT.

Around 3:30, the oncologist called the room and told me the test results. The only word that I heard in the first sentence was "good." I had to get a pen and paper and feverishly took notes as he was providing the updates. Everything had turned out as we had prayed! Thank you, God! He said the RN would come by and explain everything in detail and then he would be by after 6:00pm. The RN came by and provide details on the treatment plan (dates, drugs, doses, etc.) and details on all of the chemo drugs. She stayed about 30 minutes answering all of our questions and providing insight on the journey that we are starting.



We had several visitors today! First, Chema came by at his lunch break. He and Anna had sent Ryan a balloon and monkey earlier in the day.  They are some of the sweetest people that I have ever met.  They have never missed one of the kid's big events and are always so gracious.  God bless them!  Next, Ryan's pre-k teacher and school director came by with bags of stuff!





There was a bag full of valentine day cards, each hand-made by students at Ryan's school. Then there was a huge sign with notes from his classmates. Finally, there were toys and cards (gift cards, etc.). There were notes from teachers and parents offering their help with anything. God's love displayed!
Ryan really enjoyed seeing them, and you could tell he loves and respects his teacher. Before they left, we prayed over Ryan.

Next, Orlando came by and brought Ryan a special gift. When Orlando came by in his uniform last week before Ryan's surgery, Ryan said he wanted to be an army man. Orlando ordered a uniform for Ryan from the PX with Ryan's name and the rank of general. Ryan was excited!


The oncologist then came by and spent about an hour answering questioning, talking about expectations, risks, etc. We decided to start chemo tomorrow instead of leaving for the weekend and checking back in on Monday. He left to start the process, place the orders, etc. I have been impressed at how dedicated he is and free with his time. You can tell that it's important to him to clearly explain everything, spend as much time with us that we need, and develop a relationship with his patients' families.  We then prayed over Ryan together.

After he left, we ordered dinner and Alfredo came by to check on Ryan. He came by late after work and still had more things to do before going home. He and his family have been very helpful everyday.


I stayed with Ryan again tonight at the hospital, and our conversations were special.  They were funny (Mirjan might say gross, but he was laughing), serious, and sad.  It broke my heart when his eyes teared up as he said he wanted to go home.  I just got on the bed, held him, and prayed with him.  Ten minutes later, he was being sarcastic and joking with the nurse.

I know that this is the beginning of a journey, but am thankful to God that we now understand the situation better and the test results were favorable.

Lord, I thank you with all of my heart for the test results, your protective watch over Ryan the last week, and your display of love and caring, and your healing hands. I ask that you be with our family over the next year, help us through the challenges that we will face, protect Ryan as he will be more susceptible to illness, and let us experience more of your miracles.

God, please bless and heal my little boy.

Day Thirteen

"Wait for the LORD; be strong and take heart and wait for the LORD." Psalm 27:14

That can't be the alarm clock already! It is 4:30am, and time to get ready and go to the hospital. Ryan and I packed our bags last night, so it didn't take long to get ready and go...we didn't have the ELT factor this morning.

Ryan had his green football pajamas, a green baseball cap, sunglasses (although it was dark and raining), his heavy "New York" coat,his skecher illuminators, and his red suitcase. As the receptionist said, "He was too cool for TV," and I thought so too.


I had a million things running through my head last night, and found myself praying constantly. I was praying while doing the dishing, I was on my knees in the toy room, I prayed over Ryan, and I fell asleep saying, "Please Jesus keep Ryan safe tomorrow and heal him."

Well, we got to the hospital at 5:30am and waited around until about 6:10am. Once they called us back, Ryan headed straight for the scooters. He joined us back in the room shortly and then his highway was the halls for the next 30 minutes or so. The doctor came in to explain the port-a-cath procedure, and then we prayed. The anesthesiologist came in and asked all of his questions, and then we prayed together. At 7:00am, it was time for Ryan to ride into the operating room. He stopped at the exit sign, and I prayed with him, kissed him (he said no wet kisses), and a tight hug. I told him that I loved him and would see him soon.

The next 4.5 hours were difficult waiting. I read the bible, updated family and friends, walked around, talked to the chaplain, etc. The doctor came out around 8:30, and he said that the port-a-cath was completed. Another doctor (the oncologist) would be performing the other tests for the next several hours while Ryan was still under.

At around 12:00, the oncologist came out and said that everything was finished. He said there was a huge bandage, but not to worry because the nurse went overboard. In his words, "after the two big nails were removed from his bones, one area continued to bleed and they put the bandage on to control the bleeding." I was able to see Ryan at 12:30, and I could tell this was rougher than last Friday.



He was drinking powerade and wanted a popsicle like last time. I was talking to him and trying to make him laugh, and he would give me a smile or a funny look every now and then.



After about 25 minutes, they wheeled him up to his room on the oncology floor. Mirjan showed up at that time and gave him the mother love that he needed. She snuggled with him for a while, ordered lunch for him, and then they fell asleep for several hours.




Both doctors stopped by to check on Ryan. The oncologist said that everything looked fine from the tests so far, but pathology needed more time to validate. He said that there was something that looked concerning above his hip, but that could be bowel. He said that he couldn't see anything from the tumor point up to that area, so it was unlikely that was another tumor. However, he said the CT scan would provide the details. I definitely didn't like the talk of more surgeries to take out more bad stuff. I prayed for containment, safety, and healing. Please, God, let it be contained, so we can start treatment and Your healing process.

The chaplain came by and talked to us. She was very kind and introduced us to the beads of courage. She brought a necklace with Ryan's name in beads and a checklist. Every time he has a procedure done, he checks it and will receive a bead. There is such love displayed towards the children here.

A foundation (I can't remember the name) brought sub sandwiches for all the parents on the floor for dinner. God's love displayed over and over again. We went down to the playroom on the third floor and Ryan played with everything, and the colored a picture with Mirjan. On the elevator back, Ryan said he was going to pray for us. He put his hands together and said, "Lord, please help my mommy and daddy feel better." We were both taken aback. I asked Ryan what inspired him to pray, and he said, "You guys are always praying for me." We came back to the room and Mirjan ordered dinner for Ryan.



Mirjan took Ryan to get some movies, and he didn't want to walk anymore, so Mirjan brought him back in a wheelchair. He thought that was awesome. We started watching a Pokemon movie.

Melinda and her friend on the prayer team of their church came by with food and cards. Melinda hates hospitals and she has now spent a full day with us here and part of another. Her family has been available to help with anything that we might need. We prayed with them and then they and Mirjan left for the night.

Pastor came by and we talked for about 30 minutes. We talked as he and Ryan were playing catch with socks that were rolled up like a baseball. Ryan was in good spirits and really enjoyed that. Pastor prayed with us and then was going to check on Mirjan. I know that he has a million things going on all the time, and it was nice that he really went out of his way to come by.

Ryan made room for me on the bed and after a while we finally fell asleep together. He is so sweet.

God Bless and heal my little boy.

Day Six

Mirjan took Ryan for the ultrasound, which started around 1:00pm today and finished around 2:30pm. We hoped that the doctor would be able to review the results before the end of the day. He called us and scheduled an appointment for 12:30pm on Thursday. He told us it was a tumor, but couldn't tell us anything else.

I don't think it has really sunk in at this point. We knew that surgery was the next step, but still didn't know what it was.

I mentioned it at the end of our church meeting later that night and others started praying for Ryan. When I got home, all were asleep, and I went into Ryan's room for a while and just watched him sleep. God Bless him and heal him.