Kyle's Lymphoma Assistance

$7,350 of $18,000 goal

Raised by 101 people in 5 months
Hi everyone! My names is Kyle, I'm 30 years old, and I live just outside of Atlanta. I figured I'd start with a little bit about me. I have been crazy for a girl named Latavia for nine years now and we have a hilarious and beautiful daughter named Talia who's 3. My sister Kali, my mom Amy, and I are very close and I really can't thank them enough for all the sacrifice they've experienced, especially this last month or so. I'm a huge horror movie fan, I collect VHS tapes and comic books, love Stephen King books, and I'm very big into bands like Coheed and Cambira, Circa Survive, and Say Anything. Going to the movies, flipping though comic book boxes, and hunting for tapes at thrift stores are my favorite things to do, even if I can't buy anything, I like the hunt. I really appreciate you stopping to read my story!

I've been dealing with severe Venus Reflux in my legs for several years and among other symptoms, I've had bouts of dizziness, feeling weak, and restlessness throughout that time. However, over the course of the last few months, the dizzy spells were becoming blackouts and the weak feelings evolved into being out of breath after just walking a bit, going up a few stairs, or playing with Talia. One evening I couldn't catch my breath at all so my sister, Kali, took me to the emergency room.

On October 8th, after all kinds of testing, I was diagnosed with Lymphoma, cancer of the lymph nodes. I have a very large mass sitting in my chest, pushing down on my right lung, my heart, and the pathway from my brain to my heart. I was petrified by the news because my sister and I lost a lot of our family at a young age due to cancer. The sound of someone telling me that now I had cancer just made me think of Talia. I spent the week at Emory Midtown where they did a biopsy procedure that would be preformed by going down my throat and through my lung to get a few samples of the mass. Unfortunately, they didn't get the samples they needed so they did a second biopsy procedure, this time going through my throat, just above my collarbone, and down to get larger samples. Once the results came back, it was determined that I had b-cell non-Hodgkin Lymphoma. My doctor at the time actually suggested opening my chest up to try and get as much of the mass out as they could but deemed it too dangerous based on where it it sitting... 

34049788_1540661994373511_r.jpeg(Photo: Latavia, Talia, and I watching some cartoons while I was admitted)

Since then, I've been going to my appointments at Emory's cancer division where they've been amazing at explaining and helping me get through this as smoothly as possible. My doctor really is an amazing person and always very direct and honest with what's going on, which I appreciate very much. I'm about to do a bone marrow biopsy and a PET scan to determine if the cancer cells are anywhere else in my body and to learn what stage of lymphoma I have. I'm getting my port for chemotherapy installed into my chest this week and I'm beginning my first round of treatment on the 7th of November. I'll update the page after all of this to let everyone know the current situation.

The help my little family and I are asking for will go towards prescriptions I need for treatment, the already countless medical bills, and some of our bills at home as we are unfortunately behind on just about everything. All the tests I've done, that entire week I was admitted into the hospital, and all of the things to come are not cheap by any means. I'm in the middle of trying to get medical insurance but it's incredibly difficult and a long process. Especially since I've been a stay at home dad for last year or two due to my legs. Any little bit helps and I'm hoping to be close to or in full remission by my daughters 4th birthday in April. It's difficult for me to ask for help like this but I to swallow my pride because I need the help and more importantly to me, my family truly needs the help.

Thank you so much for taking the time to read my story. Any questions, tips, or motivations are absolutely welcome. Thanks again! 

34049788_1540662021686679_r.jpeg(Photo: My sister Kali and I just before my second biopsy)
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I have an eventful month up ahead as I begin phase two. I was originally supposed to have my first appointment to meet my radiologist and go over the game plan tomorrow, but I got a call today as they realized that I was scheduled for not only the wrong doctor, but the wrong location entirely. I’m happy they caught that before my mom drove all the way here to get me and then to the wrong place. That appointment has been moved to Monday and I’m eager to get there so I can find out what’s in store for me in the coming weeks.

After that, I meet my new oncologist as my previous one, Dr. AbouYabis has referred me to another branch of Emory that specializes in lymphoma. Why I wasn’t just seeing this doctor to begin with is beyond me. This doctor is working at the Emory Clifton branch where they have a team of folks who are actively trying to find new ways to rid people of lymphoma. They have a study they want my participation in which will entail them getting some of my blood and any of the tissue from the biopsy I got back in October. This will also be the location I’m admitted to for the month of treatment if I end up choosing to do the new rounds of chemotherapy with the stem cell and marrow extraction over the new one dose miracle pill with crazy side effects I have yet to hear more about. Hopefully, I’ll know more with the new oncologist.

In really great news, lifelong family friends of ours offered to help get my teeth fixed and my wisdom teeth removed in between all the radiation and chemotherapy. I get the wisdom teeth and the two broken teeth removed in a few weeks and I can’t wait. After all, my goal is to have a smile like a Jack-o-Lantern. We’ve all talked about the possibility of this causing the lymphoma and in truth, having these teeth, one of which formed an abscess, certainly contributed. I’m so grateful for their help in getting me the appointments and thankful that dentist is offering to help me with all of this on the house.

Aside from having my final appointment with Dr. AbouYabis after my dental appointment, Talia’s birthday is rapidly approaching, and I honestly can’t wait. I love doing this kind of stuff for Talia. Our party theme this year, as chosen by Talia, is Daniel Tiger’s Neighborhood. My mom and sister came together to help us get her a trampoline that I totally won’t be on every day, pollen or not. A few days after her actual birthday, her friends are coming over to break the trampoline in and play some Daniel Tiger themed games as we grill up some hot dogs.

I’m ready to start driving regularly and I’ve been dipping my toe into it again but I’m still getting incredibly nauseous which makes me go fuzzy. Probably not the best idea to sit in an hour and a half of traffic in the morning and another hour and a half in the evening to get Latavia from work if I randomly can’t see from time to time. So thank you all for the donations. I can’t believe this GoFundMe is still alive and kicking. It means so much to us and dramatically helps us with the $60+ it takes to get Latavia to and from work five days a week in her Lyft rides. On top of that, the prescriptions, which it seems I’ll be on more of, and all kinds of other things that helps us get through all of this.

Seems like May is when everything will be in full swing, so I’ll have a larger, more informed update around then. Thank you all again and I hope you’re all well and happy.

(Pictured below are photos of Talia pulling off her best Robert DeNiro as well as Latavia and I taking selfies with Talia just before her friend Elliott's birthday party at Dave and Busters. He and Talia were born just a little over a week apart. Side note: our selfies with her are blurry because Talia can't sit still for more than a half a second at a time.)
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It’s been another draining couple of weeks and I’m not ready to drive all the time just yet. That is definitely one of the harder parts of all of this. The dizziness is still here and, on some days, at an all-time high. It’s gotten scary a few times. That coupled with the weak old man feeling and joint pain from lying down all of the time has all continued. My last checkup, my oncologist, Dr. AbouYabis, said that the mass was still oddly active, but this was before my last two treatments, so we were hopeful. She told me that I’ll be doing some form of radiation, details still pending, and will need more chemotherapy.

Last Monday, I went in for my first post-chemotherapy PET and CT scans to find out where we are now that I’ve finished those six treatments. I thought I’d have to wait until today to find out the results, but Dr. AbouYabis called me directly on Thursday. I knew from her calling me herself and not her RN who usually does, it’d either be really good news or really bad news. The good news is that the PET shows that the cancer hasn’t spread to anywhere else in my body. The bad news is she told me that the mass is still 2cm and hasn’t gone down in the last three months, even though there were two treatments that should have knocked it out. Added to that, the mass is incredibly aggressive and active, which is worrisome. She said the one lymph node is difficult to cure it seems and it’s the “nucleus” of the tumor. Basically, the cancerous material is not dying without a fight and is able to evolve in order to survive. My head is just now growing a little peach fuzz but that’ll stop here shortly with the new rounds of chemo. Keeping it bald in 2019.

I got further details after my appointment from today telling me I have two choices when it comes to the chemotherapy. Since the mass is so aggressive and active still, my treatment will include them pulling stem cells and marrow from my blood, freezing it, and then giving it all back to me in the end, acting as my own donor. I’ll also have to be in the hospital for three to four weeks to complete this some time in most likely May which is something I’m absolutely dreading if it’s the route we go. The second option is to hear out a new procedure involving just one pill with a crazy amount of side effects that is still in its clinical trials and hope it doesn’t kill me. But I’ll know more about what that is in a couple of weeks.

I begin radiation in April, trying to make sure it’s past my Talia’s fourth birthday party, and then I’ll be back in the chemotherapy chair it’s looking like. I can’t say I’m not disappointed as I thought that light at the end of the tunnel was getting bigger. I guess I had in my mind that I was almost through this and I’ll be doing radiation then I’m golden. I’ll have an appointment with my radiologist to find out how many treatments and how much radiation there will be. I know Dr. AbouYabis says that it will be very localized so hopefully it won’t drain me too bad.

So, the cruddy news is all out of the way, let’s end with something a bit more uplifting. Growing up, my mom always had the coolest crafts for us to do. The night before St. Patrick’s Day each year, we’d set out a green castle we made from oatmeal containers and random items to ‘trap the leprechaun and steal his gold’. I wanted to carry that on for my daughter, so we made a big castle out of some of those same materials, painted it three shades of green, set up a trap, and Talia was so excited about it. So excited in fact, she woke us up at 4:30am to look inside. There she found a bunch of gold chocolate candies as the leprechaun escaped. We left a trail of the golden candies to the door where we had a rad little locket with a four-leaf clover inside for her. It’s one of her new favorite things.

Aside from that, I’ve been in bed a lot but at the same time, on my feet a lot more. I’ve tried to do a little yard work (terrible idea) and I’m able to help clean the house and cook dinner most nights. I know that sounds trivial, but when you go from puking in a bucket, unable to move much for months, anything one your feet will be welcomed. Plus, when the looming chemotherapy part two coming up, I must get as much done as possible. Still not driving unfortunately and those expensive Lyft rides for Latavia to and from work every day is rough.

All-in-all, bad news aside, I’m ready for whatever. Even if it’s as bad as before or worse, I know more now on what to do to block 85% of that nausea coming from the chemotherapy. What I’m unable to prepare myself for, and I just shivered now as I thought of it, is the taste of those damn Prednisone pills I have to take for a week after each treatment. Literally, the nastiest tasting thing I’ve ever put in my mouth and it doesn’t matter how much water’s in your mouth or how fast you swallow it, you’re gonna taste some intense bitterness. I hope everyone is well and doing what makes them happy. Thank you so much for the continued donations, I cannot stress enough how much it has saved us. We are tapped out and without your continued help, we’d be screwed. So thank you, a million times over. Shares are all helping as well, so keep it going if you’d like to!

Photos: Talia rocking my Halloween mask, our Leprechaun castle, and Talia being happy.
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Over 1500 shares on Facebook alone. I can't tell you how thankful we are. After this month especially, it truly means a lot because the struggle has gotten so, so real. It's difficult to constantly try and bring humor to this or be lighthearted when sharing a story but it's something I've always done in awkward situations. When in doubt, turn everything into a joke and act like it's no big deal. But I feel in doing so, I may be watering down this experience and what's been going on yet at the same time, I don't want to be that guy complaining once again. So what to do? I wanted to stray from the norm and really detail what's been going on, get it off my chest. I need to be a bit more transparent this time for my sanity so I'm sorry if this gets dreary.

If you know me, I'm typically a private person but there's something therapeutic about sharing this lengthy, cruddy journey. Thank you for allowing me to do so and a bigger thank you for all of the posts, messages, texts, calls, care packages, shares, and concern. I really didn't know how many folks cared and it means a lot. A huge thank you for the donations because we would've lost everything while going through this without. More on that towards the end.

I'm trying to remain as positive and as optimistic as possible but I'm not going to lie, it's difficult and draining. I've been battling depression well before this all happened and the last few months, it's shown its ugly face again. The medications I'm on have caused a weird chemical imbalance making me irrationally sad or angry in an instant. It's the worst part of this because I feel like I'm losing what little control I have. I'm already still weak, blackout dizzy every time I stand, and so tired but adding that seems unfair, especially to my daughter. But I'm working through it best I can, trying to catch it and stop before it escalates. She's a handful to take care of alone while Latavia is at work but I'm doing all I can and she's generally happy. She loves snuggling with me and I definitely love snuggling with her. I can say I am so sick of puzzles and board games but it's the easiest thing for us to play right now. Just please make Candy Land stop.

She's turning 4 in a few weeks and she's so sweet but I'm worried she has been exposed to so much that I regret her seeing. Seeing my dizzy spells so frequently that she runs up and grabs my hand to help me sit on the floor where I stood, seeing me fall or hit a wall hard stumbling, seeing me cry randomly or get angry over stupid things or throw up constantly has all weighed so heavily on me. It's stuff your kid shouldn't see, especially so young. I know what it's like to be young and witness a parent go through this type of thing and it's not fun. Talia is so smart and nothing gets by her. She may not comment on it then but she watches and brings it up later. She's been having nightmares about me now and saying she weird things about losing her dad and that all makes me sad. I think Disney movies knock off parents too often because she's definitely noticed there are a lot of dead parents in those flicks. Plus, seeing her papa Vodemort while learning about death on Daniel Tigers Neighborhood probably isn't helpful. I can tell she doesn't totally understand what death is and that I'm going to be okay soon that but knows it's worrisome and is beginning to ask those questions... at 4.

Like I said last time, being in bed this much is a nightmare and sitting to shower is so weird. I never thought I'd hate lying down but cabin fever is very real. I can't wait to get out of here. However, that all seems like small potatoes compared to that previous paragraph. I mostly just miss wrestling with Talia. She always beat me up.

At this point, aside from a few incredible people who have helped us out whenever they could monthly, donations have dwindled down but that's to be expected and totally fine. No complaints at all. I honestly can't believe we made as much as we did. I felt like maybe it was time to talk about what donations are now are going towards.

Luckily, I'm off 3 of the 6 prescriptions I was taking but unfortunately, the 3 I'm still on are the ones that cost an arm and a leg. I price match when I can using the GoodRx coupon app but the price is about the same for two of them, no matter the pharmacy. I'm still not able to drive for very long so I can't take Latavia to and from work each day. For those that don't know, we are 25min outside of Midtown Atlanta if there's no traffic. But of course, her hours going in and coming from work are the busiest tie for that great Atlanta traffic, making trips an hour plus there, an hour plus back. Latavia can't drive due to her eye sight and we've had to use Uber or Lyft, depending on the cheaper rate at the time, twice a day, 5 days a week, for the last two months or so, at an average of $30-40 a ride. That is crazy but the bus system to Atlanta this far out is very flawed. So all in all, anything donated to us goes to my biweekly prescription refills and getting her to work.

I'm sorry if this update wasn't as uplifting as I try to make them. I still firmly believe in positivity, optimism, and pushing through but sometimes you have to take the cape off and just vent it all out. Thank you for letting me do that here. I'm almost done, I know. Radiation in April, rest, remission. It's just mentally and physically taken it's toll. Next update I'll be sure to be more uplifting. I just needed to vent and be transparent this time. Thank you all for everything!

Enjoy a photo Talia took of me below. It accents my best features...
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Post treatment mini-update for those following (posted on Facebook a few days ago):

I can't wait to get out of this house. I've always been a homebody but I'm officially bored as hell. I never thought a day would come where I wouldn't want to lie down and watch movies all the time but it hit hard this past week. Thinking of breaking out the paints but I'm just so bad at it and I never know what to try and paint.

Besides my stomach constantly feeling like it's trying to eat itself and the dizziness making me feel like I got spun around by Cesaro every time I stand up, post-chemotherapy has been okay. Rough, but okay. My family has been so amazing, supportive, patient, helpful, and understanding so huge shoutout to you guys. I'm dreading radiation but I'm almost there. I miss my friends and just going out in general. Cabin Fever is definitely setting in. The perk for me is still being so hairless and smooth. I feel so aerodynamic and clean.

I keep thinking about my aunt Jessie and while she may have lost this last battle several months ago, she beat cancer so many times before. I'm over here like Tom Haverford complaining 'my tummy hurts' when she was so strong, never showing weakness and never showing she hurt. I don't know how she did it. She was so much stronger than I.

I hope everyone's week has gone well and you're all happy, finding time to do what you love. I have used my time on the bench writing a lot and creating something very special to me that I can't wait to show you all at the middle of the year. Spoilers: it's horror related, go figure.

Thanks for your continued support, shares, and donations. Special shoutout to Israel, Jennifer, and their fam for the amazing handcrafted glasses and beanie! It truly means so much. Love and miss you guys. I'll post photos of them soon! Thank you all so much again!
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$7,350 of $18,000 goal

Raised by 101 people in 5 months
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