Our son's NF journey

Josiah has Neurofibromatosis (NF-1). (Here is a brief overview of what NF is) Last week we took him to Cincinnati Children's Hospital to see his specialist, Dr. Hopkins. Dr. Hopkins wanted to be proactive and ordered an MRI with orbits to look for optic gliomas. Which 1 in about 20 kids with NF-1 develops. Most of the time by the time the child is showing signs or symptoms of one their vision is already affected and the loss vision cannot be restored. So the thought is to get regular MRI's done to look for the first signs of one so if there is one there it can be monitored and treated before any vision loss has occurred.

Because we live a good 3 hours away from Cincinnati we had his MRI done on Thursday and spent the night at the Ronald McDonald house that night. We saw his specialist on Friday. Josiah had to be sedated to get his MRI done due to him only being 2 year old. He would not be able to lay still enough for the images to be taken. So the rest of the day he was pretty wobbly and could not get his bearings. Which frustrated him to no end!

Friends of ours who live in KY were actually at Cincinnati Children's on Friday with their oldest for an appt (different type) and we were able to meet up with them! It had been a good 4 years since we last got to see them. We were only able to catch up for about 20 minutes before we had to get to our appt. But it was really nice to see them again.

Dr, Hopkins did find something on the MRI. Smiles has an optic glioma on his right optic nerve. The thickening is not bad right now. So in 3 months we have to go back and get a repeat MRI to see if there has been any changes. We also have to get an eye examination done to check for vision loss, pupil responses, etc.  If there is any changes then Dr. Hopkins will refer us to an Oncologist so they can start Chemo. (they do not want to do surgery unless it is a last resort. If surgery is done then the surgeon would have to remove the optic nerve which would result in blindness in that eye)

If there are no changes then we will go back every 3 to 6 months for MRI's to continue to monitor the tumor.

I am thankful that it was caught so early. This is not the path I would have chosen for us but I need to put my trust in God. We are 3 hours from a hospital that has a research clinic for NF. Which is fabulous and such a blessing. Josiah has not shown any symptoms of the tumor right now which is promising.

 "Trust in him at all times, O people; pour out your heart before him; God is a refuge for us" Psalm 62:8

"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

Fervent- Your Past

I had planned on posting about the each section of Fervent as I read it, but life happened. I do want to post about the chapter on your past (chap. 5) because of how impactful it was on my life. I recently started meeting with someone I asked to be my mentor. I had shared with her some of my past sins and current ones that I was struggling with. "Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results." (James 5:16)

She asked me if I had forgiven myself. I hadn't. I know that God forgives. I had asked Him to forgive me; I knew in my head that He did but my heart was having a hard time accepting it. That night I was really beating myself up about it. The next morning I looked up scriptures on forgiveness.
"But if we confess our sins to him, he is faithful and just to forgive us our sins and to cleanse us from all wickedness." I John 1:9


I also read the next chapter (chap. 5) in Fervent. It was about your past. How timely! The introduction really opened my eyes and hit me. Yes, Satan does this to me!
"If I were your enemy, I'd constantly remind you of your past mistakes and poor choices, I'd want to keep you burdened by shame and guilt, in hopes that you'll feel incapacitated by your many failings and see no point in even trying again. I'd work to convince you that you've had your chance and blown it- that your God may be able to forgive some people for some things, but not you..not for this." (pg. 93) 

Instead of feeling and celebrating God's grace and forgiveness I felt shame and undeserving. This chapter reminded me then and now, almost a month later, that instead of feeling guilt and shame and guilt I should be celebrating all the grace that God has given me! And that it should bring me closer to God not make me feel like I should be running in shame from Him like Adam and Eve did. 

I still struggle with sin (who doesn't?). I need to be remembering that God's grace is freely given and when I mess up I need to turn to God instead of the wanting to hid from Him. Satan loves to rewind scenes from my past (even as recent has yesterday) in my head taunting me with them, even though I have confessed them to God.  It is a hard thine accepting forgiveness. I forgive others easily. I just need to learn how to forgive myself!

Being Brave

I don’t feel brave. I am one of those people who when told bad news immediately start thinking the worst and sometimes the fear paralyzes me. I start wondering all the “what if’s”. The summer of 2014 I got to see how brave I really was and how I can face multiple health crises with God.

My husband has Crohn’s disease and has brushed death multiple times. That summer he really struggled with his hemoglobin levels. My husband always pulls through and I manage to deal with the children, the household, and the reality that he might not make it this time. Our children watch him faithfully praise God in midst of consistent immobilizing pain and seek God no matter what. I see him as being brave; a wonderful example to our 3 sons.

That summer my baby, Josiah (4 months old at the time), needed surgery for his kidneys. While I was pregnant we knew that his kidneys were not functioning correctly. After he was born, we found out that his good kidney was functioning at 80%, while his bad one was only functioning at 20%. Amazingly, I had peace about the surgery and thought we would get through this and life will get back to our normal.

Hours before we left for his surgery I got a phone call from a surgeon who removed a cyst from my underarm earlier that summer. It had been there for over a year and I showed it to multiple doctors but none of them were concerned about it. He wanted me to come in right away. I had cancer, a very rare form of skin cancer that only 300 people worldwide has been documented as having.

I was scared. Cancer took my mom the fall of 2010. Both my husband and my baby were having health problems of their own. I was suppose to be the healthy one! I had 2 other sons to raise. I needed to be able to take care of my husband and the baby and the other boys. I had this lump for well over a year. Did it spread? What kind of treatment would I need? How will I tell my children, especially my oldest who knows how my mom died and understands this all? How will we manage?

I did not have time then to try to Google what little information was available because as soon as we left the office we had to leave to head to Columbus for our Josiah’s surgery. His surgery was on a Friday and they kept him all weekend. I had a lot of time to think that weekend while in the hospital room with him. At night was the worst. That was when the fear started to creep in and made it hard to sleep. God gave me this verse, “God did not give us a spirit of fear, but of power and of love, and of a sound mind” (2 Timothy 1:7). He also brought to my attention that it is not my diagnosis that will affect my children as much as how they see me handle it. This was their only childhood and I am leaving them a legacy.

What they see from me has a great impact on how they will remember me. If I run from my fears and ball up and shut down- that is what they will see. If I embrace life and seek God and show that I am scared but I do not fear because I know who controls my destiny – that is what they will see. I want them to see mom seeking God, because that is what is important. I want them to know that they can be brave despite being afraid because God is in control. Showing my emotions of being sad or upset is okay, because it shows them you can be authentic. That being brave does not mean you can’t ask for help or that you need to do it on your own. But admitting that you cannot and seeking God and asking others for what you need. Thankfully, I am now cancer free and the bravery that came from my summer’s experiences are now part of the testimony I share.