Tiana Pyles
My mom, Tiana Pyles, has developed a cancerous tumor on the back of her left eye which needs to be treated as soon as possible or it will spread to her liver which may lead to even more problems or even kill her. Let me explain:
After not being able to get a regular eye exam for almost a year because of the Pandemic, my mom and I had our eyes checked. Although our appointments started at the same time with different optometrists they kept her for another 2 hours. When I asked her what was going on, she just nonchalantly said they think they may have seen a spot on her eye and just wanted to do some additional tests. That was the last that I heard of it until I pressured her about 2 months later. If you know my mom like I do, then you know that she doesn’t ever burden anyone with what’s going on with her. She feels “everyone has something,but that it’s what you do for others that helps you to feel more fulfilled in life.”
My mom reluctantly told us that she has a rare form of cancer know as Ocular Melanoma in her left eye. This cancer is found in the eye and metastasizes through the liver. Because of this, it can be life threatening. The course of treatment includes radiation placed directly on the eye in something called a plague that can help to shrink the tumor and having multiple MRI scans for the liver. There is a silver lining/blessing in all of this: There are only 4 ophthalmologists in the country that specialize in treating Ocular Melanoma and one of them is here with us in Memphis.My family and I were devastated and are still in shock. My mom doesn’t make it a lot better, because she doesn’t talk to us much about it. She wants us to focus on our own lives. But that is hard to do right now. We have been trying to figure out the game plan for treatment and we have come to find that it’s going to be very expensive. The cost of the initial surgery itself without insurance is $180,000. She does have some help through untraditional means to help with some of that cost. However not all of it will be covered and because this is going to be long term care (5-10 years) there will be other costs associated with her care and treatment. My mom is a single mom of 4. Our finances have always been limited, but she has always done her best to makesure that we have what we need; even if it means putting herneeds last.
This diagnosis will be a financial hardship and until it makes sense for her financially, she won’t address it properly. This year through the pandemic has already been challenging and my mom’s nonprofit work is mixed with a lot of volunteer work and civic engagements, all to support families and their needs. Now we are preparing ourselves to be in a fight for her own needs and I need my mom to know she has others who love her and want her to fight for herself and be well.
I am doing an all call for support in order to help keep our mom here; healthy with us. I know there are a lot of other reasons people choose GFM in order to help their causes, but I can’t think of a better reason to help my mom, a person who has dedicated her life to help others in her family, her friends and community through her work in community development. From helping with emergency housing, hosting community baby showers, building homes and putting on medical conferences for breastfeeding support and awareness, she has always put others before herself. And if you know her like I know her, she will continue to do that until her last breath. Well, I don’t want that to be anytime soon. She is of the generation who would never think to do a GFM; especially for herself, but that is why I’m reaching out for your help. I am a working college student preparing to leave home, but find that I have to stay closer than expected to make sure I can be as helpful to her as I can. But we need some help, helping her. I am asking for your help to cover some of the cost of her surgery, her extensive treatment schedule, and other things she will need through this.
Update: May 2021
After a very long winter of trying to wait for her to figure out when she will have this surgery, we are finally scheduled! Before having her surgery, she decided to spend some time in what she called a “God moment” with all of her children before the big day. Don’t worry, we were all masked up and she has been taking precautions to keep herself safe. But I think we were successful with helping her to re-create a beautiful memory. But now onto the surgery! I will keep you posted….
She had to do one more round of things to get cleared for surgery and they found a heart issue. She says “of course there would be a heart issue, we all have big hearts!” (figuratively) We are getting that addressed and will reschedule the surgery.
Morning of: after one more round of COVID-19 testing, we are cleared for her surgery. I can tell she is nervous, but she is making my Aunt and me laugh. My Aunt and I are there in tag team: My Aunt will be there as she is put to sleep and then we will switch off and I will be there when she wakes up. This first surgery will be the more evasive one because they will surgically place the radioactive plague towards the middle-back part of her eye (nose side) and they will also be taking a biopsy of the tumor for pathology. She will then be quarantined to herself, with very limited interaction from us for a week, because of the radiation.
We are at the hospital for what seems like forever! But she is finally cleared to go to her recovery location. We of course stop by the house so that she can let everyone know that she is okay. She is always looking out for others. She doesn’t want us to worry. Her left eye is bandaged heavily but she can’t open her eyes because she is extremely sore and if she opens her right eye, her other eye wants to follow, so she just keeps both of her eyes closed. She is tired. I’m not used to seeing her soo tired. I am tired too! I settle her in bed and let her rest. The doctor said that we don’t have to do anything for her for the first 24 hours, but that we are to bring her back the next day to make sure that everything is still in place. The next day her eye specialistsunwraps her eye. Everything is looking good so far. He showed me what I had to do in order to put this thick ointment in her eyeand to redress her bandages. I try to make sure not to miss anything, so I can take good care of my mom.
One of the other possible side effects of this is she may lose some, or all of her sight in that eye. Day 2-5 when I put her medicine in her eye, she would try and look at me (even though I would tell her not to) and she said I looked like a “beautiful brown dot, like the inside of a sunflower.” I told her to stop trying to look at me. I also had to tell her a few times not to take business calls. But that is my mom. The majority of the people didn’t even know that she was in radiation treatment. Or even that she has cancer. But that is my mom.
We go back a week later for the next surgery to get the plague removed. After being cleared with yet another COVID test, we are ready for surgery number 2. Again, my Aunt was there when she was prepped and put to sleep and I was there when she woke up. We thought that it was going to be a lot easier just to get that removed, even though they still had to put her back under general anesthesia. It was not! My mom was super dizzy afterwards and very nauseous. It was hard getting her home because everything bothered her, and she asked to make to stops for work. Of course I said no, but you know my mom. She continued to be really tired and dizzy for a while after the second surgery. She rested a little bit, but also had web meetings to attend. She would just leave her video off.
Eyes are slow to heal and her eye is even slower to heal. Our first update won’t be for another month and a half. My mom’s eyesight is getting better, but she can’t drive and has had to limit some of her work. That of course is irritating to her, but it’s allowing us and others to be able to be helpful. Her schedule is still very busy! There is always a lot to do in community work. I’m trying to have her pace herself, but she feels that if this situation gets any worst she wants to know that she did everything she could do, while she could. If you see her out and about wearing her sunglasses (like she needed an excuse) and you ask her how she is doing, she will probably say that she is “doing okay and hanging in there.” But then she will be very quick to ask how you are doing. That is just her. But please keep asking her and just keep an “eye” out for her!
Next update: Family, the tumor is growing. It is about a third bigger than its original size. And, she has had an “abnormal” liver MRI scan. She is also severely anemic. Her iron level was low before all of this, but now it is really low. You can never really tell how my mom is doing and processing things. I think that she just keeps herself busy with her family and work for the community in order to be a blessing to others, but also to distract herself from all that is going on with her. She once told us that if being allowed to raise stellar human beings with God’s help is the tradeoff for this and her life, then she is ready. That scared me. She says it wasn’t mean to be as if she is giving up by any means, but just also wants us to be prepared. We are not prepared. But we are trying to our best to support our mom as we can through all of this. Keep her/us in your prayers! I will keep you posted.
Some good news: So, she tells us that although the tumor isn’t growing anymore, it has only shrunk .3 from where it had grown to. They are looking for it to be smaller than its original size in order for the treatment to be considered working. There may be a possibility of having to repeat the radioactive treatment, but they would like to see if more time is needed for her eye to continue to heal and to stabilize. Every time the treatment is repeated, it increases the risks of loss of vision and or eye loss. So, we have now been encouraged to wait a few more months until she does her next check in. This hopefully will help give her more time to heal. In the meantime, we will have another MRI of her liver and keep working on her iron levels.
I’m sorry for writing what appears to be a book. I just wanted to truly give you picture of what we are trying to accomplish in asking for your help and hopefully it will give you a better picture of what to pray for.
My Mom thanks you all and has reached out to some of you all in embarrassment (she would have not have done something like this for herself) but also in deep appreciation. We have seen co-payments as much as $2,800 all the way down to $50. But they average around $300 per co-payment. Your help has been appreciated! I ask on behalf of my mom for your continued support of helping to manage some of this financial burden for her long term care and expenses. It has surely been a blessing and helpful to me, in my trying to take care of her. I thank you!
More updates to come soon. Keep her in prayer, please!
Organizer
