From Recovery to Refractory

The week of Thanksgiving, we received some devastating news: Corey’s cancer spread.

The technical term is called refractory. Basically, there were cancer cells in Corey’s body that did not respond at all to the chemotherapy he was receiving. Even though the major tumor shrunk and was removed, these tumors hung around and only grew. There were no signs or symptoms of the tumors. There was no explanation as to why one tumor shrunk while these festered and fed. But there they were: little grey spots, bringing with them weighted dread and uncertainty.

Yes, we had treatment options. The unfortunate news was that those treatments had about 50% chance of working. To Moffitt’s credit, they held strong with their dedication to fight for Corey. If one treatment didn’t work, they would move to another. By no means did the CT scan change their attitudes. But we also knew our journey through this storm just got extended, and we were headed for uncertain waters.

As you might be able to imagine, Thanksgiving was not the happiest of family gatherings for us. We were surrounded by family and people who loved and sympathized with us. But, for me, it was the most difficult week to get through. We still had so many questions and only inklings of any plans. We were told we had to wait until Monday before anything could be decided. And Monday decided to drag it’s feet.

When we finally met with Dr. Reed, he told us these were the things he hopes never happens, but he always prepares for. Prepared he was. Dr. Reed told us about an experimental study that showed very promising results. If Corey qualified, he would be receiving treatment likely to be more effective than any other treatments we discussed thus far.

This is how we ended up at St. Jude’s in Memphis, Tennessee.

Corey was accepted into the study conducted by Dr. Sara Federico, a previous protege of Dr. Reed’s. He would still be receiving the typical medicines for refractory or relapse cases, Irinotecan (I) and Temozolomide (T). The difference is the addition of a PARP inhibitor.

Simply, the chemotherapy would break the cancer cells’ DNA. Instead of having a PARP protein come in to fix the DNA, the inhibitor will allow the chemo to kill off the cancer cells completely. At least, that is the theory tested in mice and now being tested in people.

PARP Inhibitor Illistration

Illustration of how PARP inhibitors work. Photo Credit: Scoop It! – PARP Inhibitors Cancer Review

 

With acceptance into this study, additional tests and appointments were required. We flew into Memphis on Sunday, and since then have not stopped. Monday through Thursday was filled with back-to-back scans, doctor appointments, and waiting for the next scheduled appointment. Some of these tests brought good news: no cancer in Corey’s bone marrow or brain. Others brought more concern.

From what the initial CT scan showed, the cancer spread farther and faster than we thought. Not only is it in his lungs, but also surrounding his kidney, in the lymph nodes, and the lining of his lungs. There are no tumors nearly as big as the initial one. However, the wide spread of many small tumors means surgery would not be an option to remove any of them. The ones in the lining of his lung causes Corey to be short of breath and unable to take deep breaths.

I’m not going to lie: this situation terrifies me.

I never imagined my husband would have cancer. I certainly never imagined we would be in Memphis waiting to find out if this treatment is effective against the cancer. I feel like each time we have gained some sort of normalcy, we get upended again. But the doctors at Moffitt and St. Jude’s have never once given any indication this is the end. Dr. Reed assured us, while the trial may be our best option right now, it is not our last option.

For those of you following our journey, it may seem like the prognosis is terrible. To be here at St. Jude’s means there is still hope and there is still chances for Corey. A plethora of chances.

The important thing to remember is we still have hope. We are still fighting. This set back is just that. While I may be scared and question why this is happening, I know my husband will continue on until he beats this thing.

From refractory to recovered.

“Right now your life may be playing out in a way you never wished for. And you want out. Not even just out of your situation, but out of the haze that’s keeping you from seeing your purpose and leaving you to the prison of your doubts and insecurities. And how can anyone blame you?”

“But we serve a God of purpose and pain is part of a journey. Many times it’s much bigger than us, but He never wastes a hurt. He never wastes a season – even the darkest. In fact, He will restore you and your greatest ministry just may arise from this pit.”

– Brittney Moses

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In God’s Hands

Corey had the surgery. He was deemed “in remission”. We’ve been in and out if the hospital. There have been fundraisers, family time, and gatherings with friends. There have been good days and bad days.

It’s times like these, I have to remember who is in control. I have to remember there is a plan. Even if I can’t see it.

Corey, Michelle, and I went into Moffitt on November 21st expecting to hear the same things, see the same people, and be admitted for the same stint in the hospital.

That is not what happened.

Corey had a CAT scan done first thing that morning. What the results showed by that afternoon was spots on his lung that were not there in August. The sarcoma metastasized. This means we will have to switch the treatment regiment. The chemotherapy Corey was on before was not effective against some of the cancer cells. There is no reason why this happened; it just did.

We won’t know how effective the new regiment will be for another month and a half. Until then, we can only hope and pray for the best.

As some can imagine, this is a very difficult time for us. We know how much you all are praying and supporting us. We appreciate it greatly.

As we get more information, we will be able to pass it along.

Lecrae – I’ll find you ft. Tori Kelly

S-Day Has Come

And by “S-Day” I mean surgery. This is the drum solo in a rock song. The climax of the story when the hero and the villian face off. The halfway mark on a 10k marathon. We are at the top of the hill looking down.

To say the least, this surgery is a big deal. The chemo treatments leading up to this point have been to shrink the tumor in Corey’s rib. Good news is the tumor is half the size it was when we first began.

Our surgeon, Dr. Gonzalez, is very confident in the ease of this procedure  (as he should be since he is the one doing it, after all). But his confidence has helped Corey’s mother and I to stay hopeful that this will be a simple procedure and Corey will be better because of it. 

Now, the hard part is to come: waiting.

 Corey will be in the operating room for about three to four hours. The small army there to support him will be waiting closer to five hours. And I’m sure with every nurse coming through the door, every name called, we will all be wondering when it will be our turn to hear “everything went fine and he is in recovery”.

Check-in is at 9:45 a.m. and surgery will begin at 11:45 a.m. We have confidence that everything will go as planned. Don’t get me wrong, I have been nervous. I have imagined the worst thanks to my overactive imagination. But I know God has this in His hand and nothing will happen that He did not intend.

So here we go…at the top of the hill looking down. After today, Corey will officially be in remission.

“Dear God, in times of trouble, stress, frustration, impatience, in times of anxiety, help me to choose joy.”

Confession Time

For a few months, I have heard so many statements of “you are strong”, “you will make it through this”, “you have been so calm in the face of all this”.

The truth is, I am not strong. I am frustrated. I am scared. I am angry. I am all these things. But strong is not one of them. At least not lately.

Every time I have thought about writing a post or update everyone, I don’t. It’s because I’ve been wallowing. I mourn for the life Corey and I had before this. I cry about the unknown of his upcoming surgery. I stress about being able to continue our lives in a reasonably normal manner when, really, it’s not reasonable at all.

Of course, when you ask me “how do you stay so positive?”, I give a vague answer I wish I could live up to. And lately, my focus has been on “what else can go wrong?” and “what more in our lives must we give up?”.

I get frustrated because we went from our own house to living in a single bedroom. I get annoyed at all the things we are forced to do now: the precautions, the treatments, the invasive surgery. I feel dragged down by everything I wanted for our lives together and everything we’ve had to sacrifice.

And I know Corey is getting tired of the constant doctors’ questions, the poison pumped into him, the many, many appointments. I know he, more than any of us, wants all of this to be over.

People tell us to be strong and we will get through this. But the truth is it’s hard. Being positive, keeping up our normal selves, it’s difficult. Especially when “the plan” goes awry.

But the thing about wallowing is it can be very lonely and very distructive. And it shouldn’t last. Yes, I will still be angry. I will still be upset and frustrated. But, I also will be happy, and giddy, and content.

For those of you going through your own storms: it’s ok to be upset or angry or scared. What’s not ok is letting those emotions get in the way of your fight. Every storm has to come to an end, but don’t let in drown you in the mean time. This is the lesson I’m learning right now. I would have preferred to get the cliff notes…but then it wouldn’t have really stuck would it?

The Biggest Storm in History

Genesis 6:7a, 8

And the Lord said, “I will wipe this human race I have created from the face of the earth. Yes, I will destroy every living thing…But Noah found favor with God.

This morning’s sermon at Bridgepoint Church was an important one. Especially for me to hear.

Most of us know the story of Noah. At one time, God looked at the people he created and only saw corruption. Because of that, he wanted to wipe the slate clean and start new. Every person and every creature was going to be destroyed. Except for Noah, a man who walked closely with God.

Noah built the Ark, per God’s instructions. And when the floods came, Noah and his family were spared.

Pastor Tim loves this story. It shows what faithfulness and walking with God can do. He told us that Noah was available to God and faithfully did the work planned for him. 

Pastor Tim asked: are we being available for God?

God has a plan. God will give us the parts we need to follow His plan. But to get the instructions, we need to walk with God. He revels Himself and what He wants when we have a relationship with Him. Noah did. Noah knew what God was going to do from the beginning.

Pastor Tim also pointed out that whatever God has us do is a means to an end. Should we do our part, God will most certainly do his.

“If you aren’t getting all the parts, you aren’t getting God’s plan.”

All throughout this message, all I could think about was whether I was following God’s plan. Do I have the pieces I need to be successful in this venture?

I realized that the parts I need are the people around me. My parents and my in-laws who make sure Corey and I have what we need. My friends who make sure I have more in my life than work, home, and hospital visits. All the people who have given us their food, their time, their strength, their money. These are the parts Corey and I need to continue through this journey. Hopefully, we can be a light for others.

We continue to battle our fears of the unknown. We fight through the tiredness and doubts. We do so because of what God has equipped us with to make it through our own storm.

Noah built an ark to survive. We are building a life focused on God and His plan for us.

Gearing Up For Round Two

It’s been a minute since the last blog update. But honestly, there isn’t too much to update right now. Which is a good thing.

Corey is feeling good. The pain in his rib is basically gone. He has more days where he is awake and alert and able to visit with friends. In fact, Sunday night he had some friends over for the annual E3 video game conference.

Exciting, I know.

On Wednesday, Corey, Michelle, and I had to go to the hospital. The doctors told us once his temperature goes above 100.4, we would be taking a trip down to the ER. Well, that’s exactly what happened.

At midnight, the three of us left for St. Anthony’s in St. Pete. He was checked out by nurses and doctors and technicians.

6 a.m.: We were admitted and sent to a private room.

“There aren’t many good things about cancer. But let me tell you, getting a private room is one of the few benefits,” said Corey.

We had stayed at St. Anthony’s all of Wednesday. Continous antibiotics were pumped into Corey to make sure any infections would be taken care of.

Ultimately, Corey was fine. He felt good and it was a boring visit. 

Better boring than the alternative

He had already had some really good days, even though he was at his lowest immunity strength. Really, he just wanted to get out of there and go home. Which he finally did on Thursday (albeit with a bit of fighting).

Other than that short stay, our days consist of TV, medications, fluids, and family.

Corey is starting his second cycle of chemo in just a little bit. We aren’t sure how this will effect him since it is different medicines. But Dr. Reed tells us by Friday he should be feeling much better.

For now, we keep our spirits up and hope for the best.

One Down…Thirteen to Go

Corey, Michelle, and I made it home from the hospital today. It was a long five days. After awhile, it was hard to keep track of what day it was.

However, we met so many wonderful people that really made our first time at Moffitt much easier and smoother. Everyone from the doctors to the nurses to the food serivce, we owe a debt of gratitude.

So meet the people responsible for taking care of our boy!

Meet Christen, ARNP. She was one of the first people we met in the very beginning. She was very up-front but very calm when she explained what would be happening during our stay there. And thankfully, she was patient enough to answer all our first-day questions.
We also had a wonderful chemo nurse by the name of Melissa. She had such a great sense of humor! She would make funny faces and just talk with us outside of all the medical mumbo jumbo. Even though she would poke Corey with a shot everyday, she was still one of our favorites.

Speaking of favorites, she was probably one of the top. Jennifer was the pharmacist that made sure everything was good with the chemo and made sure his nedication was correct. She went above and beyond to make sure we went home with the right medication and made sure we understood everything about the next few days. I’m pretty sure she did not know what she was getting into when she came into our room.

We also had a wonderful night nurse the second half of our stay. Her name was Mirium. She was really special in the fact that she made sure Corey got as much sleep as possible. His vitals had to be checked every four hours. Day and night. Mirium would have them check vitals right before he went to sleep and right when he woke up. It really was very helpful since he would already be up multiple times a night.

And finally, we have Neesie. She was most important because she would being us food. Not just a tray of whatever we ordered, but she did so with the sweetest smile and most joyful spirit. Believe me, at 8 pm, a joyful spirit is what you need to make a long day better.

Of course there were many more people who were there to help us and make sure all our questions were answered. They made sure we were taken care of. And most importantly, they made sure my husband was getting better.

One round done. Thirteen more to go. We are just getting started, but the team behind us gives me even more hope for our journey through the storm.

Day One

The big day has finally come. And we’ve been greeted by a slew of information, people, and medication.

Thankfully, the people here are amazing. They ask constantly what his pain is like, if he is distressed, how he feels. Moffitt knows what they are doing. They even went as far as to move us to a bigger room.

For the past few days, we were getting some conflicting information about his treatment. Mostly to do with the amount of time he would be pumped with chemo. We talked with the pharmacist extensively. Corey will be getting two hours of chemo ever day he is in here. And his pain could be gone by the end of this round. An answer to a prayer. 

He has already completed the two hours of chemo for today and he’s doing great. Nothing has changed physically yet. He is a little reminiscent of a cyborg with all the wires coming out of him.

The next five nights Corey, me, and Corey’s mom, Michelle, will be waltzing the corridors of Moffitt. So prayers are so welcome!

Ways to Help

It’s a question I’ve been asked most throughout all this.

“How can I help?”

My response, as elegant as always,

“Uhhh…let me get back to you.”

It seems like a simple question to most. But in reality, it can be very daunting for the askee. Sure, I have to take care of my husband, go to work, pay the bills, help clean the house, keep the animals in line, clean up messes from when the animals got out of line.

But how much can someone really help with that? How much asking for help is too much?

For every situation, there are different answers to those questions. For us at this moment, we still don’t know what would be most helpful to us. However, we do have some ideas for those of you with the urge to serve.

I have an ongoing list of areas we could use some assistance. But I also know there are some creative minds out there. So if there are other ways people have helped you that were useful, throw them in.

1. Donate on our GoFundMe page. The page was set up by Corey’s step-mom and it’s already been so useful. You can follow the link here. You can also go through PayPal or send us a good old-fashioned check. Contact me for more information on that if preferred.

2. Gift cards. Food, gas, pets, other expenses we were not expecting. It can really add up quick. Gift cards are a wonderful thing for a family that will be on the go a lot.

3. Ideas! We will be spending a plethera of time sitting around. We know books and Netflix exist. But after awhile, it gets boring. What are some way we can be entertained for those long days at the hospital?

4. Movers. Because we decided Corey’s treatments wouldn’t be busy enough, we also decided to move during this time. Smart thinking, I know. So we will need those packer, movers, and supervisors  (such like myself) to help. A date for this par-tay will be forthcoming.

5. Have some fun with us. We are not broken. We are not fragile. We will not fall into a puddle of tears at a moments notice. We LOVE when our friends come to hang out, share stories, make jokes. We still have our normal lives and want to keep things as normal as possible. So, please, no sad eyes. Happy smiles are welcome!

5. Love, prayer, and support. I cannot express how touching it is to see all of those people who have rallied around us. A short message of encouragement does wonders. By simply knowing we are in your prayers and you are thinking about us, means more than can be said. So keep up those prayers, my lifeboats! You are the ones keeping us afloat.

The Price of Living

Yesterday Corey and entourage visited Moffitt. Let me tell you, that was a long visit. But well worth it. Some of our questions were answered and we were able to see a glimpse of what the future holds.

Should we choose Moffitt, we would be under the care of pedeatric oncologist, Dr. Reed. He sat with us for three hours answering questions, easing concerns, and setting us up to get started woth treatment right away. He showed just how knowledge he was about Ewing’s and how much he cares about curing his patients. 

He also explained that, really, this was just bad luck.

“The price of living, I guess.”

We met with the social worker on our case and out Guidance Nurse. Both women were ready to help and give us any information we could ask for. Truly we know we would be in good hands here. 

As amazing as everyone was, there definitely was some information overload. Trying to write about every piece of information we found out would not onlt be long, but probably not important for most to know. So instead of droning on with the boring parts, I will highlight a few of the more important facts.

So here we go:

All the Questions!

What is Ewing’s Sarcoma? It is a type of bone cancer that is caused by a genetic break in chromosomes #11 and #22. Apparently our chromosomes break all the time and reattach to themselves. But #11 and #22 decided to join to each other instead. Then, BAM…Ewing’s Sarcoma.

How common is it? ES impacts 250-400 people a year. Sarcomas by themselves make up only 1% of the bone cancers out there. Ewing’s makes up even less than that. In other words: Corey is special.

How big is the lesion? 7.4 cm x 4 cm. Think: about the size of a computer’s mouse.

What stage is his cancer at? For Ewing’s there are only two stages. Stage three means it’s localized, stage four means it has spread. So far, we believe Corey is at stage three.

What is the course of treatment?  He will be going through three months of chemotherapy. After that, they would decide whether to go with surgery to remove the rib or radiation. Then chemo again to make sure it’s all gone.

What is the chemo treatment going to be like? He will be given two types: VDC and IE (they have really long names so we will jus stick with the acronyms for now). VDC he will take for 8-10 hours in one day then go home. IE requires him to be in the hospital for five nights. They switch between the two for each round.

What are the short-term side effects of chemo? He will mostly be nauseous and sleepy. He was told he would loose his hair (that includes eyebrows and eyelashes too). IE causes low white blood cell count and transfusion will be needed. VDC can cause some jaw pain and mouth sores.

What are the long-term effects of chemo? VDC can cause heart issues. Likely he will have to take medication for his heart later on. There is a chance that IE can cause kidney issues or even leukemia later in his life. There is a 10% chance Corey will not have fertility issues.

How much will I be there for? All of it. And one would be wise not to question whether I am allowed to be there for my husband.

Who will be on his treatment team if we go to Moffitt? Dr. Reed would be the lead, but there would also be expertise pulled from a pathologist and surgeon.

What is his prognosis? There are a lot of statistics out there. Between 60% and 80% of the ES cases beat it. Because he is healthy and young, he is in the higher end of that range.

Are we sure there are not any other tumors anywhere or that it has not spread anywhere else? Honestly, we don’t know. His lungs are clear so that’s good. He is getting a bone scan tomorrow at St. Anthony’s and a bone marrow biopsy next Thursday to determine if it’s anywhere else in his body.

What is Dr. Reed’s experience with this type of Sarcoma? He has treated 75 patient. That may not sound like a lot, but remeber: this is a rare cancer. Seventy-five patients is a lot in this case. You can look more into his credentials here.

How soon can we start? Corey can start his first round of chemotherapy on May 27th.

I realize the questions list was a little long, but the questions we asked were even longer. I did not go into great detail with some things and may not have mentioned other things at all. If you have questions not addressed here, I do not mind answering them. Just contact me if you really have a burning desire to know something.

We are still working our way through the staging process. But Corey is a champion. There are still many tests he will need to go through. Prayers of strength are a must.

Our storm continues, but at least we have a few lifeboats now.