Friday, October 18, 2019

Suffering for God's Glory


This week has been a rough week...


Tuesday, I took Ilana to her pulmonologist appointment to get the results from her lung capacity tests. Unfortunately, she failed all the tests. Basically, due to the paralyzed vocal chord, she's unable to breathe well. She can pant okay, but anything that involves regular breathing or big breaths, she just can't do properly. He explained that due to the severity of it, Ilana will absolutely require surgery to help fix the vocal chord. Neither of us really wanted to hear that news... We see her original surgeon that did her thyroidectomy for the thyroid cancer when she was 9 in Gainesville in November and we’ll go from there.

Yesterday, I had my follow up with my neuro-ophthalmologist. I went in expecting to hear the news that everything was stable, but unfortunately we got the news that my tumor has progressed more. It’s cutting off more of my optic nerve, which explains why I’ve been experiencing more color changes. We also found out that the tumor has invaded the interior eye muscle and has taken up room in all of the area behind my eye, all the way down the optic canal and is sitting right at the opening of my brain. We were left with 3 options – radiation again, craniotomy again to try to remove the tumor, or wait. I refuse to do radiation again. It was honestly hell to me – the extreme side effects were just not worth it and it didn’t do anything to the tumor the first time.  I’m not ready for surgery again just two years later - I thought I had years before we’d have to do it again. Recovery went relatively well, but it was long, painful, and difficult. This go around will be even more risky, too, as the tumor is made up of brain tissue and lots of veins and capillaries. Cutting it away is extremely risky and will cause blindness… I’d rather wait until I’m closer to blindness to pursue surgery… So. I told him I planned to wait it out as long as possible. He was okay with that and said we will re-evaluate everything in 6 months, but if I notice more vision changes, I have to go back immediately. If the next MRI shows any growth into the brain, at that point I have no option but to do surgery…

Needless to say, I was completely caught off guard and struggled not to cry in the room and was able to contain myself until we got out to the van before I lost it. I honestly was shocked. I really expected just a stable status or was hoping that everything would miraculously be better, but it wasn’t. So I was pretty disappointed and I struggled with the news all evening.

I went through a bit of depression just a few weeks ago where life just seemed to pile up and stress just built up on top of it. Homeschooling 4 kids, raising a teen with adoption trauma (a whole new ballgame I’m still learning and trying to navigate – it’s hard!), and then medical stuff on top of it all is a lot to deal with and I began to question my purpose and worth in life, feeling like I was just failing it all. This past Sunday, I played bass at church with the worship team. When I play music, I feel closest to God… I finally felt joy that I hadn’t felt for a few weeks. After church, one of the sweetest men, Danny, came up to me to tell me that while watching me play and witnessing my faith in Jesus, God told him I was healed. At first I was a little bewildered, but then got excited and prayed he was right. I went into my appointment yesterday expecting them to say “I don’t know what happened, but everything is normal!” But, as you now know, they didn’t say that at all.

I was confused by what Danny said and began to ask God if maybe Danny heard him wrong? I woke up this morning at 5 am. I’m not a morning person, but felt wide awake and felt the urge to write. As I started to write, God told me “Your tumor is not gone. That’s not the healing that took place. The healing was in your heart.” Looking back at this week, I’ve realized God’s right (I mean… when is he not? Ha!). This week my joy is there and my sadness and feelings of doubt and depression are gone.

Now that I’ve had time to digest the news and immerse myself in God’s Word and in prayer, I’m doing better. God reminded me of his goodness and how often He’s answered prayer. Maybe not always in the way I asked for or expected, but he’s always answered in the best way possible. God also reminded me that he spoke to me nearly a year ago, on October 15. He basically warned me of what was to happen, telling me “Your family is about to endure a season of suffering. With Me, you will endure. You will overcome. Just trust Me. I’ve been there before through these seasons. Remember this. Glorify Me through the suffering. You don’t understand it now, but you will soon.” I began to cry and told the Lord that I would always glorify Him. Even through the pain. Even through the suffering. Because He is my Joy! How could I not?? I told Michael that night that I don’t know what’s going to happen, but that God told me we were going to go through another season of trials and pain and that we needed to suffer for His Glory. It’s crazy to think that all happened just a year ago!

It sounds strange when you read the words “Suffer for God’s glory”. Like, why would God ask you to suffer? Could a God who loves His people really ask that? How is that love?? Let me remind you, though. God didn’t create these trials. He didn’t create these moments for us to “suffer”. We must remember that we live in a fallen world and so suffering will just happen. Until we reach heaven, trials and tribulations will occur. But as a follower of Christ, I have a choice. I can choose to be angry at the Lord and blame Him, or I have a choice to remember God’s goodness and that my joy comes from Him and Him alone. If I have Jesus, how can my joy be dependent on my situation? Choosing joy isn’t always easy, but it’s something I have to do. And I have to remember that through these trials, I can be succumbed to anger, frustration and sadness, or I can remember that despite these hits, God is still SO good and I have to trust in His goodness, even when I’m confused and hurting. If God can use us through these trials, I’m ready to glorify Him.

“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 this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.”  - Romans 5:3-5


If you are going through trials, I want to encourage you to look to Him. Try to remember His goodness and remember that your joy is in the Lord, so even when you're struggling, you can still find a peace and joy through Jesus. If you need prayer, please email me at michaelandamanda@gmail.com and I would be more than happy to pray for you and walk through those struggles with you. 




Saturday, September 29, 2018

Dry Tortugas Camping

So last winter, Michael and I decided that if I ever had to have surgery for the tumor around my optic nerve, that before surgery, we would take a trip together as a couple and then a trip as a family somewhere. Just to have some good family time before a major surgery. We just didn't realize that when I went in for an appointment with the neurosurgeon, that they would want to do the craniotomy less than a week later, so we had no time to plan for anything. So, Michael told me that after surgery, being laid up for 6-8 weeks, I could spend time planning for a little getaway for our anniversary for the two of us in August. As our first big anniversary trip celebrating 13 years of marriage and celebrating making it through some difficult years and a major surgery. Originally, we planned to go to Sanibel Island, which is just an hour away, but due to the horrible red tide issues this year, I had to change our plans and began researching other areas to "get away", but were still in Florida. That's when I found Dry Tortugas. After a lot of research and google-ing, we made our plans and went and had the absolute best time of our lives! It's something I won't hesitate to recommend to anyone and because of our experience, many others have had so many questions and are asking for tips and advice, so I figured it'd be best to just write a blog post about our experience! Here we go!


What are the Dry Tortugas? The Dry Tortugas are a small group of islands, located in the Gulf of Mexico at the end of the Florida Keys, United States, about 67 miles west of Key West, and 37 miles west of the Marquesas Keys, the closest islands. Many people don't know that it even exists - I didn't!

There are two ways to get there: a ferry or by sea plane. Neither are cheap, but taking the ferry is definitely the most inexpensive option. It cost us $185 per person for the ferry ticket, plus $15 fee for the National Park. But - that also includes breakfast, lunch, a tour of the fort, and snorkel gear. So overall, it's not too bad. The ferry takes about 2-2.5 hours to get to the Fort Jefferson Dry Tortugas National Park and you get to spend about 4-5 hours there on an entire secluded beach that also has Fort Jefferson - a fort that was used during the Civil War era. It has remarkable history! You leave the island around 2:30-3:00.

So, while you can certainly take a day trip there and enjoy several hours on a secluded beach with about 150 other day trippers, we opted for something else... Camping! It cost just an extra $15/night to camp. We figured, if we've already paid all that to get there, why not pay another $30 to stay for 2 nights? And we are SO glad we did! Once the day trippers leave - you end up being just one/two of 10+ people on the island. The first night, we were there with 10 other campers. The second night we were there with 7 other campers. It's cool to go to a secluded island that you have to share with only 150 people, but it's even cooler to stay overnight on an island with a very small amount of other people!

So... How does it all work? What tips do we have? I'm so glad you asked!

To book, I suggest doing it WAY in advance. They book up quickly, sometimes months in advance, depending on the time of year you want to camp! We camped in September, which is a slower month. They only have 10 campsites, so they will only allow 10 groups of campers, which is why it gets booked up quickly. To book, call Yankee Freedom, which is the ferry you would be riding on. Their number is: 1-800-634-0939 .

Now, keep in mind... When you're camping at the Dry Tortugas... It is PRIMITIVE camping. There are no showers. There are composting toilets, but that's it. You have to bring your own food, your own water (for cooking and cleaning and drinking!), and all your camp gear. The campsites provide a picnic table and a charcoal grill. You have to bring your own charcoal (Propane containers or any other form of liquid or gas fuels are not allowed. For safety reasons self-starting charcoal or Sterno cans are the only form of fuel allowed) for cooking.

Camping for 2 days when the highs are in the high 80's and lows in the low 80's leave you pretty stinky and sweaty... But being able to dip into the ocean to cool and "rinse off" helped a lot. The ferry comes back each day, in which you are allowed to get back on enjoy AC if you want, along with coffee. They also have fresh water showers that you're able to rinse off with - which we did each day. No soaps are allowed, but it's a good way to get some of the sticky salt water/sweat off.

If you camp, you MUST be at the Yankee Freedom boarding site in Key West by 6:00am. ALL your gear must be packed onto the ferry by 6:30am. It is SO helpful if all your gear is in STURDY plastic tote bins and hard coolers. We took 2 large plastic totes along with a duffle bag, 2 backpacks and a cooler. If we do it again, I'd put EVERYTHING into totes, instead of backpacks and totes. It's so much handier, and it's waterproof if it rains. We got a thunderstorm our first night, which was kinda scary hearing all the lightning and wondering how everything would hold up. But, we survived and everything ended up being fine and we didn't get struck by lightning! ;)

To get your gear onto the ferry and off the ferry and to the campsite, they provide large wheelbarrows in Key West and on the island that you can use to stick all your stuff in. It makes it super easy to haul your stuff!

Make sure that you have your nightly camping fees in exact cash to pay when you get to the island. When you first get to the island, they will release all day trippers and keep all the campers on the ferry to have a meeting with one of the park rangers. He will go over all the rules and answer any questions you may have. After that, they will release you to get all your gear, which will have already been unloaded onto the dock. Most people will go and get their gear first. Our recommendation is to go and claim a good campsite first. Then get your gear.  Like I said above, there are 10 campsites. We got a pretty good one that was secluded and tucked away under some trees. We thought this was great during the day. The downfall was at night, it was hot and we didn't have a lot of airflow. If you really need/want air flow at night, you might opt for a campsite more out in the open, especially where you'd get a good breeze. Below is a map of the island. I added an area in yellow and black that says "CAMPING AREA". These are where the campsites are. The part above the "AREA" would be the area where you'd get the nice sea breeze. Our campsite was right about where the "N" was.






After you get your campsite all set up and organized, now you can go and explore! Don't rush to go do anything. Honestly, we took our time setting up camp and then ate lunch there in our campsite and then ventured out. We swam and snorkeled for a bit and decided to wait to check out the Fort once everyone left. By about 2:30, we had the entire island to ourselves and went and explored the Fort. It's eerily cool to see and explore a HUGE civil war era fort and be the only ones in there. We learned so much history, which was super fun for Michael. He's a huge history buff and loves stuff like that. It was still pretty warm so we decided to snorkel a bit more before supper.  We saw so many beautiful fish and coral. The water is SO crystal clear even far out from the land.


For our gear, we brought a tent, an air mattress, 2 battery operated fans (which were a HUGE blessing in 83 degree nights in a tent with little air flow that we got at Walmart HERE. They worked okay for our little tent), cast iron skillet and cast iron dutch oven, camera, GoPro, water bottles, plasticware, and paper plates and bowls, mugs, sheet, blanket and two camp chairs. You don't have to bring your own snorkeling gear, as the ferry provides it for you and you can keep it until you leave the island!

For food, we brought a lot of different items. We brought things like bread and peanut butter, bananas, instant oatmeal packets, granola bars, hot chocolate mix, instant coffee and boxed meals like organic mac n cheese or canned soups. For our first dinner, I made burrito bowls made with boxed yellow rice, a can of black beans, a can of corn, taco seasoning, and then we topped with corn chips and also had tortillas that we could make burritos out of the mixture with.  It was delicious, filling, and super easy to make!





 And of course we brought stuff for s'mores... How can you camp without one of these??



At night it is SUPER important to make sure ALL food is locked up into the plastic totes and put on top of the picnic table. There are rats on the island that come out at night to look for food. We never saw any or had any issues, but some camp mates at a different camp site said they saw a few, but they looked like cute mice, not like the stereotypical giant rats... As long as your food is put up in the hard totes or coolers, you won't have any issues at all.

Make sure you're out on the beach or on top of the fort for the sunsets. They're beautiful and worth the time to just sit and unwind and relax while watching God's gorgeous creation.








One thing I HIGHLY recommend is to go walk at 3-4am and even grab a blanket and go lay on the helicopter pad and watch the stars. It is AMAZING!!!!! We actually slept there on our second night because it was so much cooler out there in the open. Did I mention that there are NO mosquitoes there? Living in Florida, mosquitoes this time of year or just horrible, so to be on an island and be able to enjoy beautiful views of the stars and not get eaten alive is worth all the money we spent! ;) (Be sure to bring flashlights, but you can only use red lights on the beach during certain times of the year because of turtle nests).








You haven't seen stars until you've seen stars here.... WOW!

You may be able to even see some amazing storms from a distance!






Oh, and don't be afraid when you get to your campsite and see a bunch of these:



 Hermit crabs galore! They are ALL over the island - so watch your feet when you walk, especially at night - we stepped on a couple and cracked their poor homes. :(





And while you're up, you might as well watch the sunrise...




The next morning, you'll still have plenty of time before the next wave of day trippers. We got a good snorkel in and walked around the fort again.

When all the day trippers got there, we went back to our campsite and sat and read for a bit, but as the temperature rose, we decided to find a cooler place. That's when we found a great area in the fort on the second floor where there was a great cross breeze. This became our "secret" place where we would get away and enjoy a cool breeze and we'd sit and read for a couple hours while enjoying the view and sounds of the ocean, while also not being in the sun constantly!

I mean, seriously... Does it get any better than this?

When it's time for your camping trip to end, it's important to have all your gear packed up and ready to go on the dock by 10am the day of your departure. With your ferry ticket, like I said before, you get a free breakfast and free lunch. I suggest you save the free lunch for the day of your departure. All your food will be packed up and stowed away on the ferry. Breakfast consists of fruit, yogurt, cereal, cheese, ham, hard boiled eggs, juice, etc. Lunch is sandwiches (lunch meats and cheeses, PBJ, tuna salad), macaroni salad, chips, fruit, veggies, cookies, and drinks.

By the third day, we were definitely ready for a nice bed, AC and a hot shower, but this trip was one of those things that we will never regret and never forget. I would definitely do it again and I would recommend anyone try it at LEAST for one night!!


For a camping checklist from the Yankee Freedom ferry, go HERE.
For other camping info, go HERE, HERE, and HERE



Tuesday, March 13, 2018

God uses all things for good...


I’ve often wondered why we’ve gone through so much. Why it seems like from the very beginning, we’ve been hit by medical problem after medical problem. 


Pre-eclampsia, cleft palate, Vesicoureteral reflux (kidney reflux), Grave’s disease, preterm labors (31 and 34 weeks), detached retinas, thyroid cancer (in two of us), tumors, broken bones, cardiomyopathy, just to name a few.

Surgeries (I think I’ve lost count. There’s been at least 15 in the last 5 years.) Biopsies. Tests. MRI’s. CT’s. X-rays. Radiation. Radioactive Iodine Treatments.  

Specialists. Too many to count! Cardiologists, pediatric infectious disease doctors, endocrinologist, pediatric endocrinologists, craniofacial teams, plastic surgeons, urologists, nephrologists, pediatric ophthalmologists, retinal specialists, neurosurgeons, oculoplastics ophthalmologists, neuro ophthalmologists, radiation oncologists, oncologists, ENT’s, etc. 

It seems that we just are always hit with one thing after another and I’ve been almost habitually asking God “WHY?” But yet I’ve never gotten an answer. I mean, I know He uses all things for good. I know He will take ALL these ashes and turn them into beauty. But how? What’s His plan? 

Through it all, our family’s relationship has drawn closer to Him and to each other. Was that His whole plan all along? 

Then He began to speak to me through recent situations and I began to see that He maybe is going to use us for something greater.

Let me introduce Peter. He’s our friend from Uganda. Peter runs a ministry called Kyampisi Children’s Ministry (KCM). KCM is a ministry that rescues and cares for children who have been sacrificed by witch doctors. This is a terrible thing that still happens today. Through Peter, we have learned of so many kids with mutilated genitals and bodies – sacrificed for wealth, health, fertility and other various things. It’s sickening! But KCM is doing an amazing thing by rescuing these children and helping them through the physical and emotional trauma they have been through. Many of the kids have to fly to Australia for life saving surgeries. Peter is there now with a little boy named Benson. Benson just underwent one surgery, where they had to take tissue from inside his mouth to recreate a new urethra. In two weeks after recovery from this surgery, they will do a reconstruction surgery as the witch doctors removed his entire penis. I know that is “taboo and personal” to talk about and many don’t want to hear or know about it. Well if that’s you, I’m sorry. But unfortunately this type of thing happens way too often and here we sit in America without any knowledge of it and quite honestly, I think we need to wake to the realities of what happens in this world. We sit in our quiet little corner of the world and feel like all is okay. It’s not. We need to wake up and do something. Of course we can’t help everyone, but we CAN help some!

Through Peter, we have “met” a sweet young lady named Gladys. 


Gladys is a 15 year old orphaned girl who lost both her parents to HIV when she was just 2-3 years old. She has been a part of KCM since. I was contacted by Peter who inquired about medical advice for Gladys’ neck. Peter had followed our journey with our daughter Ilana (who had thyroid cancer) and Gladys’ neck reminded him of Ilana’s. She had a large lump under her chin, similar to Ilana’s, but a little higher. This lump had been there for several years and had been continuing to get worse to the point of affecting her ability to swallow and breathe well. I suggested that an ultrasound should be done. During this time was when I was deep in the midst of my radiation and then later underwent my craniotomy and so I never followed up to find out how she was until February, which I regret waiting so long. Turned out, due to her orphan status and lack of funds in the ministry, no imaging or tests of any kind had been done, since the cost would be around 850,000 Uganda Shillings, equaling around 230 US dollars. 

Here in America, if there’s an urgent need, you go to the ER and you can get medical care whether you can afford it or not. In Uganda, they have to have the money ahead of time before anything can be done. Since she had no money, nothing could be checked. This broke our family’s hearts. Our kids said that wasn’t fair. And quite honestly, it’s not. How is it that we live in 2018 and there are still so many kids in the world who cannot get medical care? It’s something I’ve taken for granted many times… We have been so blessed by so many that have helped us with medical costs and so we felt it was necessary for us to pay it forward and we decided to pay for all the initial testing to be done.
She had a couple ultrasounds done, in which Peter forwarded us her reports. We forwarded them on to Ilana’s thyroid specialist. This is when we began to realize how God was using all that we’ve been through medical wise… I was able to read the report well (as this was NOT my first look at a neck ultrasound report. I've read and researched more about neck ultrasounds than most!). I was also able compare it with Ilana’s and I knew everything it talked about. Thankfully, her thyroid looked okay, but she does have a large growth above her thyroid, which doctors think is a thyroglossal cyst. They won’t know for sure until it is removed and they do pathology on it, but we are praying it’s only a cyst and not cancer. That said, she is in urgent need of surgery to have this removed so she can finally breathe and swallow without complications and to also verify that it’s not cancer. The costs will be roughly $3800. This will cover the surgery, the hospital fees, the labwork and pathology, the room fees, and post surgery care. 

We are hoping and praying that you would be willing to help ease the financial burden from Gladys. Will you come along side us and help?

If we are somehow able to raise even more than the surgery amount, any remaining funds will then be given to the next child on our list. Meet Moris. (isn't he just adorable?)


Moris is a 5 month old boy with 3 significant heart defects (dextrocardia, tricuspid atresia, and double outlet right ventricle) who is also in urgent need of a surgery. This surgery will not be able to be done in Uganda, because it will be a very complicated surgery (or maybe two). This surgery/surgeries is absolutely vital for Moris to live. Michael is looking into US visa requirements to see if it’s possible to get them to the US for surgery. We are also contacting the cardiologists we know and will start contacting hospitals to see if there are any that would be willing to do the surgery pro bono or at a significantly reduced rate. From what I've read, his heart condition is very serious and it's amazing he's lived so long without medical care.

You see? Through all of our medical issues, we have made contacts with doctors in various hospitals, we have learned lots of medical lingo, and we have learned how to fight for good medical care. Perhaps this is what we are meant to do? While we can’t help EVERY child in the world, we can help some and are determined to do so! Which is why we are starting to create RENU Ministries. 


RENU Ministries will be used to support children like Gladys and Moris. Unfortunately, creating a nonprofit takes awhile to get set up, but Gladys and Moris don’t have that time. So we hope and pray that despite it not being a nonprofit yet, and you’re unable to make it tax deductible, that you’ll still feel led to give. 

Like it says in Matthew 25:40, “Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’”

These children are so often overlooked or ignored. Isn’t it time for us to step up and help. Even just a little? 

Would you be willing to give up a Starbucks or fast food run and donate what you would have spent?

Or would you be willing to donate $15 in honor of Gladys’ age? Or $5 for Moris’s age (in months)?
Any and every amount will add up and no matter how big or small, it will help immensely! Every cent donated will be donated directly to Peter and Kyampisi Children’s Ministry to pay for Gladys and Moris’ surgeries. If you have any questions or want to help in any other ways, please feel free to email us at michaelandamanda@gmail.com









As a “motivation”, so to speak, we are going to do a sort of raffle. With every $5 donated, you will receive an entry to a raffle. We at RENU Ranch will be raffling off several different items. Some of our kids are adamant about participating and doing things to earn money to help. They were wanting to sell their bikes, sell their animals, bake items, sew items, and such. Anything they could do, they wanted to try! Here’s a list of items we all came up with:

For anyone:

- A tshirt with a custom vinyl design of your choice

- A hand drawn portrait of your choice drawn by the talented Kaelyn Reese

- A custom wreath for your front door made by Ilana Nunez

- 3 custom headbands made by Lydia Reese

- $100 giftcard to Kallie & Co given by the amazing owner who has already donated hundreds of shoes to women in Uganda. This is an amazing, generous company!



For local supporters:

- A date night experience at RENU Ranch “Restaurant” – A completely homemade meal made by the women at RENU Ranch, served by the RENU kids, in an intimate, relaxing outdoor setting with light dinner music. 

- One dozen homemade cinnamon rolls


- One salted caramel apple pie with extra salted caramel sauce in a mason jar

- A custom pallet wood sign (your choice of wording and color)














- Two dozen homemade cookies of your choice made by Mikiyas Nuñez




To enter in the drawing, please email us at michaelandamanda@gmail.com after your donation with how many entries and which prize you would like your entries submitted into. We will video the drawings on March 23 and will post the video and winners on the blog and my Facebook page. We will also contact the winners via email. 

Please follow THIS LINK to donate:


Monday, January 1, 2018

Even with Unanswered Prayer, God is still Good...

In two days I'll be undergoing a very serious and complicated surgery that, from the human standpoint, terrifies me. Not many people can go into any surgery without any fear, but a surgery where they have to open up your skull to remove or "make room"  for a tumor wrapped around your optic nerve? A craniotomy with tons of risks? It's scary.

Yet somehow, I'm not really worried about it. Somehow I feel pretty at peace. Initially I was in complete shock. I was unable to really speak and my body shook from the nervousness. As it sunk in, and we shared the news with family and then later with all our support and "family followers", I was covered with a complete peace. A peace that I knew could only come from Jesus...

As I began to speak about this peace to a friend, I was asked how in the world I could still have peace from the Lord when he didn't answer our prayer and how I could trust a God who doesn't answer prayer. It was an honest question and one that I've had to ponder for a couple days... 

So. How do you trust a God who doesn't answer your prayer? How can you still have a peace about a situation when you have no idea what the outcome may be? 

It's truly difficult to answer. We had hundreds if not thousands of people praying for me over the last few months. As I endured 6 weeks of daily radiation and the absolutely horrific and painful "rare" side effects from the steroids, people prayed for me. People prayed for my tumor to be shrunk or to disappear. I prayed this prayer. Our family prayed this prayer. When radiation was finally over and symptoms from prior to radiation began to reappear, we had people pray fervently that the swelling of the eye and the headaches returning were from the tumor shrinking or disappearing. When I underwent another MRI to show if radiation had done anything to the tumor, people prayed the tumor would be gone. I mean, again, HUNDREDS or THOUSANDS of people had been praying for the tumor to be gone. It had to be, right?!

So when we found out last week that the tumor was still there, and not just that, but that the tumor had not done a thing, we were obviously very disappointed. Along with the tumor not shrinking, we found out my vision had gotten worse, I had gotten more blind spots in my vision, my retina was damaged, my cornea was damaged and my optic nerve was even further compressed. We didn't realize how serious the situation was until we met with the neurosurgeon 2 days later, who said something like this can't wait and surgery needed to be done ASAP. We assumed we had a month or so. We didn't realize he meant 5 days later...

So... Back to unanswered prayer. Did God answer our prayer and our kids' prayer and the thousands of other prayers that were prayed on my behalf? No. He didn't. At least not in the way we had planned. My tumor hadn't shrunk. My pain hadn't gone away. The radiation didn't work. Is it disappointing? Yes! Is it frustrating? Absolutely? Was I angry? You bet...

But just because God didn't answer those prayers doesn't mean that he is not a God who listens. That he's not a God that doesn't answer us when we cry out to Him. You have NO idea how many prayers He DID answer while I underwent radiation. You see, while going through the radiation and my head being strapped to a table for 15 minutes everyday, I decided I'd spend that day in prayer. I fervently prayed that entire time every single day for all the prayers people asked me for over 6 weeks. It was a time I spent fully one on one, with no interruption with the Lord. I prayed fervently for friends, for people I didn't know, for health, for marriages, for finances, against difficult things like depression, divorce and cancer. I prayed and prayed and prayed. And you know what? I have gotten COUNTLESS responses near the end of my radiation where God answered the prayers. Where marriages were restored, cancers were gone, finances were suddenly better, and health problems were healed. There were times where I wasn't sure exactly what to pray, but prayed for what the Holy Spirit laid on my heart. And would find out the next day that that exact prayer was needed at that exact time. SO many times where God proved He was listening to my prayers. 

I'm sure some are wondering "Well why didn't He answer the prayers about you?" I really don't know. But what I DO know is that He IS a God who answers prayer (and sometimes His answer to that prayer is different than we hoped for). I DO know that He IS a God that cares for His children. Sometimes His answer to prayer takes time. While my tumor hasn't shrank yet, whose to say it won't shrink eventually?  How do we know that God doesn't have a better plan? How do we know that God doesn't plan to use this horrible tumor for something SO much greater than we ever imagined? While I AM disappointed that the tumor is not gone and I am sad that I have to undergo this surgery, I am most thankful to have that hope in Jesus and that no matter what the outcome may be, God is there with me. That God is good, despite the diagnosis. And for now, my prayer is that God will use this for something great. That He will use this for something so much better than we can even fathom or imagine. 

He hasn't shrunk the tumor, but do you know what He HAS done for us? He has given us the best support system ever. He has given us countless amounts of people who pray daily for us. He has answered our prayer for financial stability as we've been so blessed by countless amounts of people who have given to us financially which has allowed us to not worry so much about medical bills and travel bills. We found out that Michael will have to take off this entire week to be with me in the hospital. And because of all the health issues in our family, he has used all his sick and vacation days (which doesn't renew until July) and will have to take the week off unpaid. We were worried, but I said we would be okay and God would provide.  In just the last week since sharing the news of the upcoming surgery, we have been given almost the exact amount of Michael's paycheck. For 4-6 weeks, I will be unable to cook or clean or do much of anything. I was worried about how I'd be able to do it. But my sister and mom will be stepping up majorly to help and we've gotten a bunch of people on standby, ready to help with anything needed. Along with this, we are being blessed with giftcards for gas and giftcards for food for us after surgery because I can't do anything for 6 weeks. And in addition to that, my sister set up a mealtrain for us for every other day for 4 weeks and within 2 days it was filled.  Our church has rallied behind us and yesterday we had dozens of church members and elders surround me and my family to pray for us. It was amazing and I'm so absolutely grateful to have a church that has such huge prayer warriors!

We are so grateful to each of you who have supported us and are continuing to support us on this long and difficult journey. Thank you for showing us that even if the tumor hasn't shrank, God still is answering our prayers. Through each of you. Days when we can't pray, you're covering us. Days when we worry about finances or a bill, in comes a random donation. He has answered our prayers and given us such a huge support system and we are SO grateful...

Please continue to pray for us this week... Tonight Michael and I head to Miami and will stay in a hotel so we don't have to wake up super early where we're able to get one more good night's sleep and we can get one last date night, before all the chaos begins. Tomorrow I meet with the orbital surgeon and then in the afternoon I will be admitted to the hospital as they prepare me for surgery  Wednesday. I will be in the hospital until Sunday. Please pray that the surgery goes well. Please pray that the kids do okay with Mommy and Daddy being gone for so long. Please pray for them to be covered in a peace that surpasses all understanding. Please pray that God uses this situation and that He gets glory throughout it all! 

Blessings,
Amanda

Sunday, November 19, 2017

Weary in the fire


Isaiah 43:1-3

At 2am this morning, I began to read one of my devotionals which really struck me... Here's an excerpt:

"When you determine to take a stand in faith and refuse 
to give in or give up when the fires of life are blazing, 
you’ll make your enemy very, very angry indeed. Things 
may heat up for you before you see the hand of God move
 on your behalf. But never assess the power or goodness of 
your God by the heat of your fire.

The time that passes between the utterance of your prayer
 and when His answer is delivered is called “the testing of
 your faith.” Most people tend to give up when they pray 
and then nothing happens. Most people become negative, 
fearful, or bitter when the temperature of their fire is 
multiplied by seven. However, it is vital that you remember
 that the goodness and power of your God is unaffected by
 the temperature of the fire. "



This is all so very true... And the enemy is becoming very angry with our family right now. Things have been "heating up" more and more and I am becoming so very weary. Between the exhaustion from being unable to sleep from the steroids, and now all sorts of new crazy symptoms, it's getting hard to not give up.

I came down with thrush this week. Fuzzy feeling with white spots in my mouth, bleeding lesions, and then pain feeling like my tongue was being peeled off in strips. Thankfully medicine and natural remedies have helped this tremendously over the past few days and I'm on the mend...

The day after the thrush occurred, I began a new symptom that pretty much showed up out of nowhere as I began walking up some stairs to pick up my kids at our Friday morning Bible study. My knee locked up and it became so hard to walk and bend. I figured I had just moved it weird and continued on. It unfortunately didn't get any better and when we got home, I looked closer at my legs and found my knees were swollen and looked strange. As the day went on, the pain got worse and I had to literally limp out from radiation because my left knee would not bend without tons of pain. Unfortunately this pain has only gotten worse over the last day and I've found I have literal fluid pockets all round my knees. Apparently this can be a side effect from the steroids. It can also affect my thigh and calf muscles which is why my legs are in so much pain. The steroids are also causing swelling everywhere else and in my face as well. These steroids are just horrible! And unfortunately I have no other option as they are completely necessary to keep intracranial swelling down. So unfortunately this is just more stuff to endure over the next several weeks of radiation and being on steroids....

While I know it could be SO much worse, it was just one of those moments where that final straw  kind of broke the camel's back. This whole season isn't easy and these symptoms that keep getting added on make it so much harder. Our fire is being multiplied and I'm trying really hard to not become negative, fearful or bitter as it happens. I'm feeling physically, mentally, and emotionally exhausted and weary and so I guess this is my call out to please, please, PLEASE pray for our family. Please pray for us as we endure this fire. Please pray that we are able to continue to endure and fight and not give up. Please pray that we are able to continue to find and see joy. That we are able to continue seeing God's goodness and promises and power. Please pray for my kids as Satan attacks them each in various ways, trying hard to bring them down. Please just pray for endurance.

Please pray:
Galatians 6:9 
"Let us not become weary in doing good, 
for at the proper time we will reap a harvest if we do not give up."


 and 


Ephesians 6:11 
"Put on the full armor of God, so that you can take 
your stand against the devil’s schemes." 


and 


Romans 5:3-5
"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 this hope will not lead to
 disappointment. For we know how dearly God loves us, 
because he has given us the Holy Spirit to fill our hearts with his love."




(Also, side note. From here on out, my radiation time is at 2:45 instead of 4:00. I know many have chosen the 4:00 time to pray, and so I wanted to share this change)


I have no doubt that some of these attacks are occuring, because this morning, Ilana and Michael both take a full stand in their faith and fully give their lives to Christ in baptism at church! Because of this, I choose joy! Despite the pain. Despite the weariness. Despite the exhaustion. I am choosing joy in that these hot fires of life are NOT stopping my family from fully following our Lord. And I have no doubt it's from being covered so heavily in prayer.... So again, friends, family, and followers, thank you for all you do for us... To some of you, you may seem like a prayer is nothing. But for us. It's holding us up. Especially now where I seem to be hanging on by a mere thread... So thank you for blessing us with your prayer and your time.... Thank you for being constant encouragement to us....




Sunday, November 5, 2017

1:00am Writings - My New Normal

It's 1 o'clock in the morning... But I'm up and writing. God and I seem to have an unending date every day at 1:17am! So here's this week's update!

I'm at 2 weeks of radiation down. 4.5 weeks to go...

Things I have learned... Steroids are awful. They have so many crazy side effects! But I know they are beneficial, especially in my case. With having radiation to my head, I’ve been experiencing increased swelling in and around my right eye and horrible headaches. The radiation is causing intracranial swelling which is compressing on all sorts of nerves and blood vessels, which caused me to be in the most excruciating pain I have ever been in before on Monday. I was in so much pain I told Michael I literally just wanted to die. I’ve given birth to three babies without an epidural. I’ve endured kidney stones which I think was worse than labor. I would have preferred 10 kidney stones while giving birth, over the pain I was in Monday.  That was a really scary moment for me and the rest of my family to see me in such pain.  Michael rushed me to the ER, where they gave me a shot of morphine for pain. 

The next day they decided to put me on a different steroid that’s longer release and something I have to take 3 times a day instead of once in the morning, as the previous steroid was wearing off by the time I’d have radiation and the internal swelling would occur at night, causing the pain. While this steroid seems to be working (as long as I’m taking it at very specific times), it unfortunately is wreaking havoc on my body. My body and mind is exhausted, yet I’m unable to sleep. I’ve slept about 16 hours total in the last 5 days/120 hours. I’m able to sleep from around 10pm-1am and then I’m up the rest of the day... 

In a way, it’s been kind of a blessing, because I get some things done while everyone is sleeping (like making elderberry syrup, snooze tincture - I’m willing to try anything for sleep!!, homemade bread, etc), and I get a good length of quality time with the Lord. I’ve started doing 3-4 various bible studies and I’ve picked back up on writing my book that I’ve considered writing for years. Maybe God will use this time where I may finally complete it! 

But while I’m able to accomplish so much, I know my body is becoming weary and my brain is feeling all the affects from the radiation and the lack of sleep. I’m becoming more forgetful and confused and struggling with basic concepts. It’s weird... It’s like mom brain on steroids. Literally! 

Despite all of this, I find myself just consumed with joy. I’m constantly looking for things to be joyful about because I know how easy it is to dwell in our current situation and see all the bad and I do not want to be consumed with that. I know that despite our circumstances, God is still so very good!! And we are so, so blessed by Him. 

I have some great doctors who truly care... Not many doctors ever text you throughout the week just to see how you’re feeling. What a blessing it is to have a doctor who does this for me. 

My daily radiation time has become such a huge blessing and joy for me. I’m able to sit and talk in a women’s waiting room with other ladies going through cancer. I’m the youngest one in there by about 30-40 years usually, but it’s such an encouragement for me to talk to these ladies each day and I cherish the wisdom they speak of. I go into the radiation room and am literally strapped to the table with a face mask to prevent my head from moving at all during the radiation. This time has been so amazing to me as I lay there, giving back to all those who have prayed for our family over the years and I lay there in prayer for so many people who have shared their prayer requests with me. (If you have a prayer request, I would absolutely love you to email me at michaelandamanda@gmail.com or contact me on Facebook. I would LOVE to pray for you!) 

I have found that through all of this chaos, God has drawn me closer to Him than ever before and I’m just so overjoyed and truly happy... Our whole family is constantly working on choosing joy, as well. It’s been hard for some of my kiddos who already struggle with change and depression and anxiety. This month, during November, we are really focusing on GRATITUDE for how good our Lord is and we plan to use this month to give back to Him by helping others. Whether in prayer or in any other way God sees fit - our kids are thinking and praying for God to give them ideas of random acts of kindness gestures we can do each week and they are just so excited to give to others!! What better way to prepare for Thanksgiving and Christmas than aligning our hearts to give and be thankful?

We are especially thankful for each of our followers, supporters, prayer warriors, family (church and blood) and friends. Your prayers have helped sustain us on the hardest of days. Your monetary gifts have helped ease the burdens of all these medical appointments. Anytime I start to worry about our finances, we get a random check in the mail or a donation on our GoFundMe and it’s just a constant reminder again, that God is good and He will supply ALL our needs and He reminds me to stop worrying!! 

I know so many have asked how you can help tangibly, and I really don’t know right now... Your support and offers truly mean a lot. Really, your prayers are so appreciated and I will try to update once a week with specific prayer needs. 

Here are a few for this upcoming week:

  • For my kids... This is all a lot to endure for them. I’m always the one taking care of them and I’m always home with them. With me being tired and struggling with pain, I’m not able to as much for them and I’ve had to rely heavily on my mom and sister and Michael. They are a huge blessing! But I know it’s hard for my kids to not see me being “normal” and to have me leave everyday for an hour or so for radiation. They’re all still reacting in many different ways to all the change and while I know it’s normal and okay, it’s hard for me to see certain ones struggling so much... 
  • For Michael - it’s hard for him seeing me in constant pain. He’s so incredible though at taking care of me. Such a blessing to have a husband that loves me and cares so much!
  • For my steroids to allow me to sleep a little longer than 2-3 hours a day and for the exhaustion it’s putting on my body to not wear down my immune system.
  • For the amazing people I meet every day at radiation. For their bodies to heal completely of each of their different cancers. 
  • For wisdom for my doctors in knowing what things to do for me, as I’m pretty much a guinea pig/experiment as they’ve never treated this before. 
  • For the deep, internal pressure in my head to subside. While the headache pain has decreased from Monday, I still struggle with the normal "dull, aching headache" I've had for the last 6 weeks. But there's now a new kind of "pain" which is more of just internal pressure. I'm sure it's from the intracranial swelling, but I'd love for that pressure to be minimal...
  • For God to be glorified through our entire family's circumstance. No matter the outcome. 

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.