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.