Year 2

It's been a while, a year to be exact. I'm not 100% sure I know how we got here. I feel like 2023 did not even happen. Most of the memories I can retrieve quickly are from March 2022- December 2022. It's an odd thing, being told your child has cancer. Everything stops, life before was over as you knew it, you can't see the future. It has been two whole years since we were taken into a small room with really uncomfortable chairs to be told our girl, in fact did have cancer. I remember we immediately started firing off texts to family and close friends. I imagine that text came as a bit of a surprise. Not because we were so sure she didn't have cancer but because we actually heard the words and had to actually say it. It was a simple text, "still with doc, she has leukemia." I think I've said this before but that moment was like a movie scene where a bomb goes off and there's no sound but you feel like all of your senses are so heightened and then the sound comes back and you're trying to recover. We've come a long way since that night. She's now officially been undergoing chemotherapy for 730 days. We still have two months of chemotherapy left, port removal, 6 months of monthly antibiotic transfusions, and then a regimen of monthly to yearly blood draws and count checks. If you saw Quincy now, you'd have no idea the hell she has been through. I say this knowing full well that Quincy's cancer is the "good kind" and we are so "lucky" for that. When I complain, I am quickly reminded that someone somewhere has it worse. Quincy still fights every day to get through. She is nauseous most days, her legs and feet hurt, she gets tired so easily still, and she has the shortest fuse. 🤪

We have had a pretty decent year honestly. She has not been admitted one time, we've only had a handful of ER visits but for the most part, her counts have remained pretty good. She takes Mercaptopurine daily with Methotraxate on Thursdays. We have found a good friend in Zofran! We discovered last spring that she did in fact have some bone issues due to this whole

Ordeal. Her limp was a sign to me that something was wrong in the very beginning. Once she entered long term maintenance, her limp came back. That was obviously very stressful as my first instinct was, "relapse." It took a few months of bringing it up to doctors until I finally requested another bone marrow aspirate to convince me that she was not relapsing. Doctors are hesitant to do something like that because it does require another time under anesthesia and it could all be for nothing. But, when you're dealing with a potential that your child's cancer could be back, her being put under is the least of your worries. Her counts were so good, but if you remember, there was never cancer blasts in her blood or spinal fluid so those don't always bring Tom and I comfort. We settled on getting full X-rays and then we'd discuss. Low and behold, she had Kohler disease or basically Avascular Necrosis in a bone in her foot. It basically cuts off oxygen to the bone and kills it. She was in a protective boot for 8 weeks- during summer 🥴 and now wears orthotics daily. We're not real sure if that's a permanent thing or what. It's something we need to revisit. She kept being in constant ear pain. She would have liquid coming from her ears often, we'd go to our pediatrician and be given antibiotics over and over. Until one day, she had blood. It was quite frustrating to me that we were constantly bringing her in and was never once referred to an ENT. Finally our oncologist referred us and she ended up getting tubes put in both of her ears. I didn't realize how triggering that process was going to be for me. It was something about them taking her from us in the same hospital gown she wore for her bone marrow aspirate and watching her disappear behind the doors for surgery that kind of sent me into a bit of a spiral. She recovered quickly and we've had no issues since.

Again, if you saw her and didn't know she was battling cancer, she would look like any other child. I wish that brought me comfort. The fear of relapse does not go away. Her looking so good does not bring me comfort, in fact it scares me. It's scary because we could be on top of the world and it could all come crashing back down in an instant. I can tell by her mood and behavior that she isn't doing great mentally so when I see her struggle, I just want to scream "she's been battling cancer since she was three, this isn't her! I'm sorry" but I don't. I just let my heart break in silence. It's hard to hold a child accountable for things they can't control. We're trying, don't get me wrong but it's hard. We're trying to set boundaries again and have expectations for her. In the beginning she felt so awful and was so physically beaten up that she just laid on the couch or slept. Now, she has energy but it's chaotic energy. It's like having the flu but not being tired and feeling like that all day long. Some days, I feel personally victimized by her and who doesn't with small children?! But, she has such big emotions and is so out of control of her own self that it's actually sad to see.

She has continued at her preschool she has been at since she was 2.5. She likes going there and she has some little buddies she loves! She is doing dance again this year and will have a recital again this summer. Which, last year at her first recital I'm not sure she did one correct move but man was she feeling herself! I don't want to say she stole the show.... but she kind of did. We went on some trips last summer to see family and got to go the beach again. She LOVED staying at "Aunt Mary's" condo on the beach in Marco island, Florida. It was the best of both worlds for us. The ocean was right there but it also had a pool. Since Quincy has a port, she can't be in unfiltered water. So we spent a lot of time at the pool and playing in the sand. She asks to go back often. Our friends had another Quincy 5K for us in September which was completely ruined by a massive storm. The lightening was striking all around us and we were just trapped in dugouts and the box. We had a lot of really cool things planned too. Oh, and I was getting over Covid so I was able to go but stayed away and left early. That night, she got to be a part of the Braden's Hope for Childhood cancer 2023 Gala. It's a massive fundraiser. Tom took her in a pretty gold dress with new black heels and lipstick, of course 💁🏼‍♀️. I knew she was going to have to be on stage and honestly, I thought that it was about to be a disaster. But I got video sent from a friend in attendance and our girl got right up to the mic to introduce herself. I could feel the audience response through the phone. Here's this little four year old saying, my name is Quincy and I have cancer and I have a Tubie spot. 😭 I was so sad to have missed it but I heard she really tore up the dance floor. She also got to help dye a fountain on the plaza gold for Childhood Cancer Awareness month with other amazing cancer warriors from our area and ride in a BMW motorcade from Union Station to the plaza. She loved her new car 😂. We also attended our second Leukemia Lymphoma Society light the night walk. The difference a year makes in pictures was really something. She was completely bald the year before. She started dance again this season and she is back in gymnastics. It's really important for her to rebuild her strength and stamina. I know people look at her and think nothing of what she's doing, but when I look at her I see such a transformation. I know people don't know how weak she was. I know no one understands how different body moved while she was receiving Vincristine weekly. But all of that is etched in my brain and to see her flourishing sometimes brings tears to my eyes. She is starting the evaluation process for Kindergarten next year. She will hopefully qualify for an IEP as she is very behind her peers. The medicine changes their brains. It's not necessarily always permanent. But most children face cognitive challenges from treatment throughout their entire life. It's something we wanted to get out ahead of so she will go into K with a solid plan. She is excited. She has ONE more spinal tap. She's has so many, I've lost count. I cry at every one of them. When you watch your child's eyes change and watch them fade into an unconscious state, you shouldn't have to be used to that. It's that combined with the needle going into her back and having a chemical injected into her spine and then anticipating the results of their findings. It's all too much.

I don't know how I feel as we are ending treatment this summer. I don't ever want to go back but the farther we get from frontline and the hospital stays and the bald head and weakness of her, I find myself being sad. I don't want to ever forget everything we have been through. I don't want anyone to forget what she's had to do. I feel like from March 2022- whenever it hit me, Tom and I had both been in such a manic state of mind that once things settled down, it hit us like a freight train. We were in fight or flight with the only option being, fight. We were both just always living in panic and fear. So, I guess this is PTSD? 🥴 I can't tell you much about 2023 but I can tell you that we've been struggling. The world truly doesn't stop. I feel like it's changed us both. I'm kind of ok with it though. I don't care about a lot of things a lot harder than I ever did but the things I do care about, I care so much harder. I'm not sure we will ever just "fine" ending treatment brings so much anxiety. I hope I will find it exciting at some point but right now, I do not find it exciting. Tom and I were basically just thrown out of an airplane with a malfunctioning parachute. We were shown more love and support then we ever thought possible and that was the beautiful part of it like being able to see the world from a different perspective. And now we're safely on the ground but still just trying to recover from what the hell just happened. When you're faced with a life threatening illness, you have to out yourself in a space where you lose that person. There been many times where I've had to internally process the thoughts of Quincy dying. I've Had to think of what that would look like, what our future would be, etc. it's pretty suffocating thoughts. I never said it but it turns out Tom and I have had the same feelings. It's really something you can't forget. I will never get over this experience. All I can do is be an advocate for her. I find great joy in researching, advocating, and supporting others through their own journey. It's crazy I can go from fine to fear in the matter of seconds. I pray every day that she will be completely cancer free and live a long, healthy, happy, successful life well into her old age. I pray she uses this experience, whatever she remembers of it to strive for something great in her life. I hope she forgets the physical pain but remembers how strong she is. I hope she forgets the fear in our eyes but remembers the pride we have felt in her bravery.

There was life before. There was life during. Soon, there will hopefully life after. God willing.

Cancer sucks. In children it should never happen. But Tom and I both feel so deeply connected to cancer that it doesn't matter how old a person is. It's heartbreakingly unfair. Our family has been touched by cancer is so many ways. Just recently at the funeral of an amazing cancer warrior, I heard a song. Do you ever hear a song and it literally stops you in your tracks? This song is so beautiful but also a punch to the gut. I played it in the car because I needed to hear it again. When I got back in after getting the kids it was playing. Everyone sat in silence just listening. The next morning, Quincy requested it. And she was immediately humming along and singing the chorus as best as she could. She's requested it several times since. 🥰💔 For me, it was how I have felt this whole journey. the first part rattled me to my core.

Rescue

By: Lauren Daigle

You are not hidden

There's never been a moment

You were forgotten

You are not hopeless

Though you have been broken

Your innocence stolen

I hear you whisper underneath your breath

I hear your SOS, your SOS

I will send out an army to find you

In the middle of the darkest night

It's true, I will rescue you

There is no distance

That cannot be covered

Over and over

You're not defenseless

I'll be your shelter

I'll be your armor

I hear you whisper underneath your breath

I hear your SOS, your SOS

I will send out an army to find you

In the middle of the darkest night

It's true, I will rescue you

I will never stop marching to reach you

In the middle of the hardest fight

It's true, I will rescue you

I hear the whisper underneath your breath

I hear you whisper, you have nothing left

I will send out an army to find you

In the middle of the darkest night

It's true, I will rescue you

I will never stop marching to reach you

In the middle of the hardest fight

It's true, I will rescue you

Oh, I will rescue you

Thank you. For the bottom of my heart for continuing to support us through these last two years. I'll never be able to adequately express our gratitude but just know, it's kept us going. I can't believe how fast and slow this time as passed. It's truly mind boggling.

Thank you for reading my horribly embarrassing, no spell checked, grammatically errored, cluster of a blog post. I'm not a writer and I write how I talk..... which is, not great. 😂

Love, Katie ✌🏻🤟🏻🫶