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!

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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.

Diagnosis Confirmed

We got the call this morning. It is now official that Corey has been diagnosed with Ewing’s Sarcoma. Tomorrow we have an appointment with Moffitt Cancer Center in Tampa, Florida. We’ll finally get to ask some questions and hope to make some more decisions about where to go for treatment.

Now I realize I started out with the diagnosis and did not really give any background to how we got there. So cue the swirly flashback scene, because here we go.

We’ve been married for three wonderful years. But throughout that time, every few months Corey would get this sharp, constant pain in his side. Usually if he cleansed his system and changed his diet some, he was fine. But then it would come back again a few month later. For the past three years this pain has come and gone six or seven times.

This last time was the worst.

The pain came, but nothing was helping. It continued for days and it got so bad that Corey was shaking from the pain.

April 11th, 1 a.m.: Time to go to the hospital.

We went to Northside Hospital with a less than stellar outcome. They took CT scans and did some other tests to let us know that Corey had a funky rib and sent him home with the advice to follow up with his primary care. No meds for the pain, no treatment plan to look into.

Thankfully, we have an amazing doctor looking out for us. Dr. Karges looked at the CT scans and the report from Northside Hospital. He told us this was much more than just a funky rib. He directed us to an oncologist.

“I’m not an alarmist, but I want to make sure we get this checked out.”

The best decision we could have made. We got a biopsy of the bone and muscle at St. Anthony’s on May 3rd. What a difference that was! The people there were so kind and so attentive. My favorite had to be the attending nurse, Ms. Helene. She really took care of my husband. Many thanks to her if she ever reads this.

The results took longer than we would have liked (but who ever wants to wait for that to begin with?). But on Friday May 12th, we went to see the Florida Cancer Specialists and we got the news. Then confirmed this morning.

So there it is. It took us three years to get to this point, but at least now we know what we are facing and what we need to do. The next step is to figure out where we need to go.

Just have to take it one day at a time.

Into the Storm

It was something that, once I heard it, I couldn’t stop hearing it. It was a simple truth spoken in a sermon by the head pastor at Bridgepoint Church.

“In life, we are either in a storm, coming out or about to go in.”

As I sat there, I knew there was a storm brewing and I was heading straight for it. Little did I know exactly how big that storm may end up being. On Friday May 12, 2017, my husband, Corey, got the unofficial diagnosis of Ewing’s Sarcoma.

For those of you, like us, who may not know what it is, Ewing’s Sarcoma (ES) is a type of bone cancer. Usually presented in childhood, it is very rare to see it in adults. It is characterized by pain and/or a lump where the tumor is, fatigue, loss of appetite, loss of sleep; all of which can be seen in my husband. Because of its rarity in adults, there is little known about the prognosis and treatment outside of childhood, and most of the research is contradictory.

Now, I say unofficial because the only way to know if it is ES would be to rule everything else out. Multiple molecular tests have to be run on a biopsied sample of his bone and tissue. The final test has yet to come back, but the doctor at the Florida Cancer Specialists was fairly certain.

The cause of this cancer is still uncertain, but it is likely from some DNA change that occurs deep in the chromosome make-up. John Hopkins gives an excellent explanation of what can happen. The treatment for ES is long and drawn out. Likely, Corey will be going through chemotherapy, surgery and another set of chemotherapy. Lots of chemotherapy.

The good news in all this? The sarcoma is localized to his rib and there is a high cure rate with this disease. Once we get a team of doctors in place we can start moving onto the treatment and getting him better.

But this is what this blog will be about. My storm. Our storm. And the journey through it. This is the storm surrounding not only my husband and myself, but also our family and those close to us. We are going through this. But we are going through this storm together.