An Outside Eye Looking In: Starting The Battle

"Soon after my brother, Devon, was diagnosed with epithelioid sarcoma, we became associated with the Josh Powell Foundation. Fabi has played a pivotal role in providing support not only for us, but many other families as well. Due to her love and support, I was asked to write a testimonial on my brother’s battle, and I couldn’t be happier to do so.

It was back in November that my brother finally got the spot on his leg biopsied. It simply wouldn’t heal and resembled a bruise…. I remember getting the phone call and thinking it was just some messed up joke that he was playing on me. I just didn’t believe it. I wouldn’t believe it. That kind of thing just doesn’t happen to someone you know that you’ve fought so many battles alongside. That is the thing though; cancer doesn’t discriminate. It will affect whom it wants to and when it wants to. There may be some genetic predispositions or lifestyle choices that may affect its formation, but ultimately, it carries its own path. When he asked me to come over with the 35-minute drive in between us, I knew he was serious. I was told to take it slow getting there, but my foot couldn’t have felt heavier. My brother needed me, so 80-85 felt like nothing to me. Having a previous medical background, the histology report I read when I got there only confirmed what I didn’t want to hear. It wasn’t only cancer, it was a rare form of sarcoma that affected the soft tissues of the body in young adults. I feel like it didn’t truly hit me then, everything came in the weeks to follow.

We had some imperative choices to make in the weeks to come. We contemplated MD Anderson in Houston, Texas with it being one of the lead sarcoma centers in the nation, but the insurance wasn’t accepted there. We then settled for a cancer clinic in St. Louis that I will leave unnamed for the time being. Initially, the care was great. There was an established game plan to cut the mass out if his leg, scans and tests were being done, and it felt as though there was a good care plan involved. I thought it was odd for them not to do any chemo or radiation before a large surgery like that dealing with a cancer with a high rate of metastasis. Not only that, but after time, the care plan seemed to be uncertain. Devon was told there was no chemotherapy for his form of cancer, then told there may be, told there wasn’t, and then told there may be one with a 50 percent effectiveness. When they chose to amputate his leg and run the tests prior to the procedure, they found a spot on his groin and a possible nodule on his lung. They wanted to do more biopsies, and that worried our family with the amount of time he would have to wait after with seeing how fast the spot on his shin spread after the first biopsy. We decided against it, and decided to get out of a facility with an uncertain game plan.

Luckily, we ended up having coverage at MD Anderson after some more work and phone calls. People should always try to get a second or third opinion when dealing with issues this serious. First and foremost, I highly recommend the care there. From day one, my brother was informed that the way the STL clinic was handling his case was wrong. I acknowledge every case is different, but overall, everything seemed so wrong. There were better ways to go about his case. There is a chemo effective in handling this form of cancer. That same chemo and radiation should have been implemented before the tumor extraction. There should have been more communication and collaboration for a common cause in STL, and the first doctor he met with in Texas noticed all of this. Since that meeting the other day, they addressed the issues the other clinic was worried about and believe the swollen lymph nodes in his groin are from the massive surgery he received and the abnormal PET scans of the lung was a possible lung infection, not a tumor. More testing will only confirm that, but the specialist was very confident with the findings.

It has been one hell of a roller coaster with learning of my brother’s illness and losing my grandfather to leukemia in the past two months. My brother is my best friend, and my grandfather was my main father figure growing up with not having my father around until my stepfather. How can you fight a battle for your younger brother like you always have? No amount of talking, encouragement, money, or any other idea you can come up with can cure him of the illness. You can only be there, and watch it as it unfolds. That is the MOST demoralizing feeling knowing you cant fix things or fight his fight like how it has always been done in the past.

This is where my advice will come into play. If you’ve taken the time to read his story, I hope this can give you an insight on how to handle your situation, as similar or different as it may be. My number one thing is to get a support group. I’m lucky to have the family and woman I do at home. You truly realize who your friends are and who truly cares about you and your family. Surround yourself with these people. They will become your backbone. I’ve become so much closer to my friends, and came to the conclusion that the woman I’ve been with for this long is likely the one I am going to ask to marry me. These people will pick you up and push you, even when you feel like you can’t go on. Talk to foundations like the one Fabi runs. These people and their supporters are truly the only ones that know what you are going through. Pray to your God, and do it with the upmost heartfelt words you can manage. There are so many people to talk with to discuss your battle. Bottling things up will only tear you apart, day-by-day.

Get involved with these organizations. Get involved with trying to help your family member surpass this obstacle. Most of my time lately has gone towards organizing a benefit for Devon. You don’t know how many people are in your corner until people you don’t even know want to come out to help, make donations, or contributions for the cause. Most of the people that have helped the team and I don’t even know my brother. If you want to talk about a spirit lifter, nothing else can make you feel like this. Ultimately, this will help alleviate a lot of the expenses of travel, extraneous medical costs, and overall fiscal responsibilities that comes with trying to battle this disease. The feeling of seeing everyone gather to support us come March 10 is going to be overwhelming, to say the least.

Cancer sucks, pure and simple. It has taken far too many people, far too early. People have to realize that it is a fight not only for the one it is affecting, but their family as well. Lives will be forever changed, whether the battle is won or lost. We just have to remember to keep going. We can do nothing else. I don’t know if this will help anyone, but if this provides insight to one person at all, I will feel like my mission here was a success. Keep fighting."

- Josh Glasgow