Saturday, October 21, 2017

Our Next Chapter

What a crazy few years it’s been… Two and a half years ago we had to say a painful goodbye to our son as we watched him join a new family.  We didn’t understand God’s plan and purpose and why there seemed to be such a huge twist in our adoption story. We were heartbroken (and still struggle with grief to this day), but we tried hard to trust the Lord and His timing (to read more about this chapter, you can read it HERE). 

We didn’t expect what would happen 9 months later. I will never forget that moment when Ilana looked up and I spotted the large lump on her neck. After a bunch of doctor appointments, ultrasounds and a biopsy, it confirmed our biggest fear. Cancer. Her surgery was tough. The cancer was all over in her neck. The thyroid, the muscles, the lymph nodes, around her trachea and in her vocal chord. Hearing the doctor tell us that we may never hear our daughter speak again literally brought me to my knees later in the hospital waiting room bathroom as I cried out to the Lord asking “WHY?!?” Her radioactive iodine treatment was even harder. Having a 9 year old so completely alone and isolated for 4 long days. No one could be near her. No one could touch her. No one could eat with her. When she was sick from the medication, no one could be there with her to hold her hair back as she threw up violently. When she cried out saying “Mommy, I need you! Mommy I feel so alone!” I could do nothing. 

We would’ve never imagined that 6 months after her surgery, we would find out that I had the same exact diagnosis. Papillary Thyroid Carcinoma and I would undergo the same surgery (which thankfully revealed the cancer being completely encapsulated and not near as invasive as Ilana’s was).  

Then 2 months after that began the battle of Aydan’s eye pain, caused from prior surgeries on his retina. The pain was excruciatingly debilitating. It got to the point where he could not be outside because he was so sensitive to the light and it caused so much eye pain that he couldn’t function. It’s hard for anyone to go through pain like that, but an 8 year old boy? It was awful…  1 year and 4 surgeries later he is finally pain free and his retina is finally healed and attached. 

This latest hit caught us by total surprise.  I had begun noticing my right eye getting larger/more protruded. I was battling frequent headaches and my vision seemed to be getting blurrier. A few months went by with more symptoms and I began waking up with a swollen eyelid.  I really didn’t pay much attention to it and kinda wrote it off as stress and lack of sleep. It wasn’t until I was reading about my thyroid disorder (Grave’s Disease) and read about thyroid eye disease (TED). My symptoms seemed to fit and I decided I really should talk to my thyroid doctor about it. He referred me to an oculoplastics ophthalmologist who decided to have me get a CT scan to confirm the TED and told me to see a regular ophthalmologist to see about my vision changes.  We decided to use Aydan’s local eye doctor because we completely trusted him, and this doctor has shown us just how much he cares for our family.  This was when we first started to realize there was something more going on. He had me get an appointment with a few other eye specialists and told me to go through with the CT scan, all within the next 2 days. 

As I sat in the neuro-ophthalmologists’ office waiting to see the results of the CT scan, I never even considered or imagined that there would be anything beyond the thyroid eye disease. So when the doctor came in and told me that this was NOT thyroid related and that there was a tumor behind my eye, I was completely speechless. He showed me on the screen and explained everything to me and asked if I had any questions. I sat there, shook my head “no” and walked out pretty stunned. The next day, I was called and they wanted me to get an emergency MRI. This was when it really felt serious… After the MRI and lots of waiting and doctor appointment and a second opinion 3 hours away, we got the official results:

Most likely an atypical globoid meningioma that seems to be fairly aggressive that is wrapped around my optic nerve, which had already begun causing permanent damage to the nerve, resulting in the death of retinal cells, peripheral vision loss, blind spots, diminishing color, and overall decrease in vision.  A high dose of radiation, spread out over 6 weeks (Monday through Friday) is required in hopes that it stops it from growing any further. If the radiation treatment does not work, then that means this meningioma is likely something even more serious and our only other option is a very intense and invasive and scary biopsy/surgery with some very dangerous risks. 

As we drove home from Miami, feeling at peace about our decisions and at peace with what all will entail over the next few months, I listened to Bethel Music on my phone and spent time in prayer. As I looked up at the setting sun, I realized that the sun was no longer bright while looking at it with just my right eye.  I began to sob as reality set in… I began to pray for God’s will. For God’s purpose. That God will be glorified through every day. That He will be glorified with each appointment. And that no matter the outcome, I will always praise Him.

I’ve had people comment about how they don’t know how I can still be joyful. Or how I can still praise Him. Or how I’m not angry over all that has happened with our family over the last couple years.

I’ll be honest. Throughout the last 2 and a half years, I have been angry. I have literally laid in bed and cried out to God asking “Why?” Asking Him where He is. Asking Him why He seems to have just left me alone. So many times where I’ve felt such darkness. And I’ve become so overcome with grief that I can’t see Him and can’t fathom why He would allow all these things to happen to us.  (You can read about it in my last post “Floodwaters”). Eventually the darkness would begin to dissipate and I’d see that God WAS still there.

But this most recent twist in our story has left me thirsty for more of Him. I’ve felt such an overwhelming sense of peace that it just doesn’t make any sense. It reminds me of the verse in Philippians 4 “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” I’ve realized that through prayer and devotion to Him, I’ve become filled with a peace that has surpassed all understanding. 

When I ask “Why?”, I now realize that all the prior experiences in medical crises, surgeries, and such have prepared us for this moment.  In the 12 years that Michael and I have been married, we have been through 18 surgeries, hundreds (if not thousands) of appointments, and what feels like a gazillion scans/ultrasounds/tests. We have a daughter who was born with a cleft palate and only one functioning kidney with kidney reflux, who was diagnosed with a rare thyroid cancer at the age of 9 and is still battling it to this day. We had a preemie son with the same kidney issues, and who has had eye issues since he was 6 months old who had a detached retina at the young age of 5. We have a son with HIV, a heart condition and endocrinology and growth issues. We battled a difficult surprise pregnancy that resulted in another preemie child. We have battled much more than the average family, and while that really stinks sometimes, I’ve thought about what it says in Romans 5 “We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation.” And I’ve realized just how true this is. Through all these situations, we have developed such an endurance that this newest diagnosis isn’t going to knock us down.  Isn’t it better for us to endure this trial when we are well prepared to overcome? 

All that said, this isn’t easy. This new diagnosis is a hard pill to swallow. This diagnosis comes with a lot of pain and frustration. I wake up every day with my eye swollen and looking like I was punched in the eye the night before. I’ve been suffering a constant headache for over 3 weeks which seems to be getting worse as the days come.  And what makes it hard is that I cannot take anything for the pain, so I’ve learned to just deal with it and I try to ignore the pain as much as I can. I AM angry that we have to endure this on top of everything else we’ve endured. But even so I choose to praise Him. I choose to. Because despite the pain. Despite the diagnosis. Despite it all… God is STILL good. I have to endure this pain and suffering, not because of the Lord, but because we live on earth. This world is a beautiful place. But it’s a fallen place. And because of this, people will endure hunger, pain, and suffering. But this is even more reason to praise God. That because of His great love for us, He sent Jesus. So that one day we don’t have to suffer anymore. One day, we will be healed and whole and pain free. Because He loves us!! Regardless of the pain the world gives me, I still have the hope and love of Jesus. Jesus is still good! This is my answer to my kids who have been asking why God is allowing so much to happen to our family. That we live in a fallen world with sickness and where bad things happen, but to constantly cling to the hope and goodness of our Lord and to remember that God can bring beauty from these ashes. 

Aydan came up to me one evening and said “Mommy, I think I know why God is allowing this tumor. There are still a lot of unbelievers in the world, right? So maybe He is going to use your tumor to bring others to Jesus if you keep talking about Him when you’re hurting. People are going to see the hope of Jesus in you and want that, too!”

So even on days when I’m angry, I will still praise the Lord. Even on days when I’m in pain, I will choose to praise the Lord. Even on days when I have nothing to say, I will STILL choose to praise Him. No matter what the outcome of this diagnosis may be, we will still choose to praise Him. Even when it makes no sense.  I’ve learned that in order to keep myself from constantly focusing on all the hard stuff in life, I have to choose to find joy in every situation. And so I praise Him for all the good that still occurs, in between the hard. 

Lately I’ve been praising the Lord for the support system He has given us. I’ve been inundated with texts, Facebook messages, phone calls and emails. It’s honestly been hard to keep up with everyone. It’s amazing. I never imagined that we’d literally have hundreds of people praying for us all over the country. We have people asking to help with the kids, asking to help us with medical bills, asking to bring us dinner, heck – even people offering to come and clean toilets! We are seriously so blessed by what God has given us – a giant body of Christ who truly loves and cares so deeply for our family…  Along with that, RENU Ranch. Our home. Living next to my sister. The whole point of RENU Ranch was for it to be a place of renewal. We never imagined we’d be enduring something like this, but living so close to family is something I’ve been praising the Lord for every single day. God has blessed me SO much and I am so thankful for all He has done for me. 

For those who have asked for specific prayer requests….
- For God to be glorified through it all
- That the tumor will shrink over the next 6 weeks of radiation and for minimal side effects
- For my kids. They are all reacting in various ways to all the chaos that has occurred over the last 2 weeks. Regression, PTSD, depression, attitudes, worry. It’s been tough and I have a feeling will get even harder in the weeks to come as mommy leaves each day for appointments
- For Michael – that he continues to trust the Lord through it all




I’ve struggled with blogging consistently, and so I’m not sure how often I’ll be able to update this through our latest journey. I will be sure to post updates in our Facebook group that originally was created for Ilana’s cancer, but now has become more of a Warriors for the Nunez page. You can follow that HERE. Another friend created a GoFundMe page to help with all the crazy expenses that will incur with this. She will post occasional updates on there, too. You can visit it HERE.


3 comments:

  1. Beautiful, inspiring and honoring to the Lord. All of you. Constant prayers for all of you.

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  2. Beautifully written Amanda. Your son Ayden is very wise. It’s hard to rest when your on steroids. I was on them for two years. Uggh! I am so sorry that life has been so difficult but I know the strength of the Lord is going to carry you and your family through this. It is so evident you have complete faith for what He is allowing in your life. Even though you don’t like it (who would?), I and so many others admire your complete trust in Him. We will all render the heavens on your behalf and believe God for complete healing.
    Janine Hewitt

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  3. OH Amanda. I am in awe of your strength and how you are reaching out for God more during these times. I ask Him "why" for you all the time! I pray that you and your family would have a time of rest, healing, and a "normal" schedule/life that doesn't include doctors! But I also pray that He would be glorified- and I think He is! You, and all of your children... and your marriage, it all points to Jesus! You are always lifting up praises to God during the good and bad, when it's hard and when there is joy and good news. You are doing just that! The evidence is in Ayden's answer- it's about God! I'll continue to pray for you guys <3 Just because we left a church and moved away doesn't mean we can't still pray or stay in touch! We are here for you any way you need us to be! <3 We love you and your entire family! EVERYONE! Well I kind of have to since I was a part of that family:) LOL <3 I miss those days <3

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