1 year.

Disclaimer:

The grammar and punctuation in this post will not be top notch. I'll be lucky if I get through this without flooding my house with tears. Also, there may be some "TMI" parts and I do apologize. This is also super long. And I may say some potty words and believe me, it's the first time I'm saying them....(hehe) I apologize in advance. Also, it says "Amy" as the author, she's my cousin who created the site.

It's been a whole year since Tommy and I were taken to a small room next door to Quincy's room to be told that she in fact, had cancer. When I think about that week, I can't even believe I survived it. There's so much about the last year that I don't even remember but the memories I do have, I can still feel in my soul. I still feel every emotion like it was yesterday. I'll back up just a bit....

On St. Pattys Day last year, we went to the Lawrence parade. I took a picture of Quincy's legs in comparison to mine. I don't know why but I also do. If that makes sense. I remember knowing that on the 18th I had to get her blood drawn. I remember thinking, "oh my god, what if somethings wrong with her?" And I just couldn't get over how innocently small her legs were and how I'd just die if there was something wrong with her. I just knew my heart couldn't bare it. The 18th came and she handled getting her blood drawn like a freaking champ, I couldn't believe it. Her doctor called me that afternoon to tell me the information. Everything was low, hemoglobin, platelets, WBC... but she said, "no cancer blasts, so you relax" she said this because when I initially took her in to tell her about her lymph nodes, I was teary eyed and I just said I need to know it's not something. She said, " I know what you're thinking, and this isn't it"

I tried to breath, but she said to retest in 2 weeks. This was on a Friday. By Sunday, she was limping, she was with Tommy most of the day and I was a little crazy about why she was limping, I just kept asking him why and he didn't have an answer. She hadn't hurt herself. By Monday, she had a fever. My sweet little Mimi was in the hospital, most likely dying during that time and I wanted to go see her. I told tommy I'd go see Mimi and then take Quincy to Children’s Mercy. I called the nurse line and told them about her blood work, limp, fever. They agreed she should be seen. So that's what I did. I remember telling my mom pretty nonchalantly that I was taking her in. I really didn't want to burden her since Mimi was in such bad shape and had been in the hospital for over a week at this point.

It was raining a lot and I cried the whole way there. Something was just telling me something was wrong. They ran all sorts of tests, I remember they'd check it off the list and say "great news! It's not a septic hip, it's not this, it's not that,"etc but in my mind, I was saying no! That's not great news. Everything they listed off were "easy" fixes that I so desperately wanted it to be. The doctor basically said, look we want to confirm there's no malignancy and I was all alone late at night, with my innocent little girl thinking what in the actual hell is going on. So I called tommy and I just said you have to be here. They were admitting us. So in the rain, downtown we went. We got to our room and she fell asleep pretty easily. My little bed was by the window and I just laid there looking at the sky and I remember begging God to protect her. I kept feeling my grandpa really present in my heart. It was so weird. He actually died of Leukemia in 2016.

The next several days were more tests, doctors/ nurses just coming in and us replaying the same shit over and over. More tests, more "great news! It's not this" convos. Every avenue was leading us to cancer. Tom and I both knew it. But I don't think we actually said. I called my sister in law, Hannah (she's a nurse) and I just lost it. I said I think she has cancer. It may have been the first I said the words. This was the day of her bone marrow aspirate.

It was time for her BMA. They took us down this maze to a room. When we walked in, there was a teenage girl, bald. Sitting with her dad and I wanted to puke. They gave her some medicine to make her unaware that we were leaving. One of our nurses, Alex took Tommy's phone with her and wheeled Quincy away from us while she watched a video on his phone. I can still feel the fear in my entire body. I just wanted to grab her and run. After the BMA, the doc who performed it came out and told us it was tough for them to get her fluid out of her back. I said why? And she said, "well it's probably packed with leukemia cells" and I quickly realized that she was not aware that no one had actually said the word to us. She backtracked pretty quick but the damage was done. So we waited for over 24 hours. In the meantime we had been given the "no cancer blasts" comment on another blood test.

Thursday, March 24th.

After basically threatening the staff that if we went another day without a doctor coming to us, I was going to f*cking snap! A doctor came in. This lady wanted to tell us the news in front of Quincy. So I politely (I think) said can we not? So they had a care assistant come sit with her. She ended up falling asleep watching coco melon. We went into the room. I swear to GOD, this lady wanted to talk about everything BUT what was wrong. I finally said something. And then it happen.

So, Quincy does have Leukemia, she has Pre-B cell Acute Lymphoblastic, Leukemia. As I'm writing this, I am back in that chair. Her little life flashed before my eyes, I know people say that all the time but I kid you not. I thought oh my god, she's just a baby. If something happens to her I'll die. How can I go from 3 babies to 2? How could Josie and cal not have their sister? The thoughts were spiraling in my head and I just felt helpless. Tommy asked the survival rate. 90%. So like, 10% of kids don't make it???? The cancer was only in 40% of her bone marrow. Hints why it wasn't showing up on blood cultures. We started texting our family and close friends. The text read, "she has leukemia, still with doc" just copied and pasted it to everyone we could quickly while trying to focus. She said if doctors had to pick a cancer for their child, it would be this one. What a prize we just won.

The next day, her port was implanted at 10:00. Handing Quincy over to the anesthesiologist was like ripping my heart out of my chest. Our friend, Hilary (also an anesthesiologist ) was there that day and just having her present was huge. Off to the waiting room we went but it was like I was trying to walk through cement. My legs were like, not today. Getting her back was a mix of emotions. There was something foreign in her body, something that is saving her life. She now calls it her tubie spot and could not care less. She's our very own Ironman.

Port is implanted, chemo is administered and we're officially on this pediatric cancer journey. It all came so fast. I don't know anything about anything but this last year, I can tell you A LOT about pediatric cancer. I naively thought, ok after 28 she'll be remission and then it's maintenance. Boy was I wrong.

The next 28 days don't even feel like my life. I just remember how awful she felt but she didn't know why. We'd get in the shower and she'd just stand there with this look on her face like help me mom. And I'd just telling her how much I loved her, how beautiful she was, how strong she was, how she's gonna feel better soon. I remember washing her hair and just crying knowing it would be gone soon. I almost didn't want to touch it. I thought maybe if I don't touch it, it won't fall out. She didn't eat much for a solid 2 weeks. Got down to 23 pounds. Her days consisted of, sleeping on the couch, wanting food and taking 1 bite and not wanting it anymore. I literally was up and down the stairs making her whatever she asked for. I think the first 6 months we spent a good $600 at least on doordashing food. Just for her to take a bite. She wore a pull up a lot, she had been completely potty trained. TMI* she would fill her pull up with what I can only describe as tan foam. And she didn't even know she was doing it. It would just happen and she's just again give me that look, like help me. Every night she'd just crawl into bed, curl into a little ball and ask for her llama warmie and I'd just lay there brushing her hair just trying to remember what it feels like. I can still feel it. It was so soft and precious. She was so proud of it. Most nights she would fill her pull with the foam, Tom would change it, she'd get up to eat, or just be overall uncomfortable. But tommy was always there. He has slept on her floor every night since because he's the best Dad in the world. 28 days of steroids will F you up. The hunger was wild, getting up to eat breakfast burritos throughout the night. I'd wake up and she's already had 4 burritos. But how defeated and sad she was will haunt me. I remember a chunk of her hair coming out in my hands. I felt panicked like I wanted to stick it back on her head. This can't be happening. The 28 days came and went. We had to wait till Monday to get the final word.

Monday came, it felt like we were never going to get the call. Finally. We did, and we heard the word, REMISSION. I definitely felt my legs go numb. My grandma had passed by the time (2 days after her diagnosis actually) and I just said thank you mimi, thank you Pawpaw. I felt like Mimi had died to protect her in a weird way. Like, she always felt close to her because of their blue eyes and was gonna save her.

Again, naively I thought ok, maintenance here we come! What a fool. I thought the hard part was over. But the hard part was just beginning. The steroids made Quincy so so so incredibly swollen. I could hardly hold her, her belly felt like it could burst at any moment. The few times she would try to dance, all she could do was sway. The chemo (Vincristine) that she was taking weekly affected her nerves so she walked weird. Like she was just learning how to walk, her body just didn't move like it used to. Her face was puffy, she looked strung out, her bright blue eyes weren't so bright, her hair was frizzing and falling out, she has sores on her cheeks from picking at it when she felt anxious. Before all of this Quincy loved her binkies. But she didn't need them all the time, post diagnosis, she's got her 2 binks with her ALL the time. What most people see is a now, 4 year old with a binkie. What Tom and I see is a f*cking warrior who doesn't remember life before feeling like shit all the time. Who finds a sliver of comfort in a bink in her mouth and one rubbing under her nose. Yea, sure her teeth are gonna be so messed up. But when you have inject poison into your kid daily, cosmetic issues kind of fall by the wayside. She was hospitalized at least 5 times during the next 8 months. ER visits more than I can count. You see, cancer kids are in danger for a fever. EVERY. TIME. They have to be seen immediately to get antibiotics to protect their ports. The port feeds straight into their bloodstream so if it gets infected, things go south. QUICK. Blood transfusion, platelets transfusions, fluids, fentanyl, so much fentanyl, Zofran, so many spinal taps I've lost count, the lists goes on and on. It's like you treat one thing but here comes another med to treat another thing. I feel like she missed out on a lot. There's been so many times over the last year where she was in the hospital or so crummy that she'd lay on the couch and ask me to open the window so she could hear the kids playing outside. She'd just smile. Her dancing, her tiptoes, her little voice, all went away. Her binkies were in her mouth so much over the last year that when I hear her voice without them, I'm so overwhelmed with our precious it is. She lost a friend. How f*cked up is that? She's 4 years old and lost a friend. I'm 34 years old and I've never had a friend die. They saw each other several times while inpatient and in clinic. They'd talk about their hair coming back, their tubie spots (port), ya know.. things kids shouldn't even know about. To this day, everytime we pull into Children’s Mercy she asks about her friend. Today, we took blankets from our church to donate and she said, "can I pick one out for Axlyn ?? So she did. There's so much that nothing in life can prepare you for when your child has cancer. I could write a whole other blog on shit life can't prepare you for. But, I won't. Life will never prepare you for hearing your child has cancer. Life will also never prepare you for meeting people along the way and losing them. Life will never prepare you for the reality of " my child has a disease that could kill her" sets in. It will never prepare you to watch your child fight for their life. So many days I wished it was me. I can make myself sick over it. Just why? Why couldn't it be me?

But, your child having cancer can also bring out a side in you that you didn't know you had. Tom and I aren't special. Any parent would just put their head down and just do whatever needed to be done to survive and to save your kid. I tell you what though, I don't care about much outside of my family. This has changed me. No doubt. I hope for the better but the jury is still out. You can be pretty cold about a lot of stuff when you watch your baby fight for her life. The day to day nonsense that would have bothered me before doesn't really bother me anymore. I've learned to let a lot of crap go (well I'm trying) I've learned also, to tell people how you feel. Even if it's strangers (which can be a bad thing if you comment on my kids bald head or call her a boy) but I've hugged a lot of people in the last year. I found this need to want to help other families like us. I hope I can someday. This entire time, we've been utterly overwhelmed by the love and support from everyone around us. There will never be enough words to express our gratitude. It's literally kept our heads above water. From the food, to blankets, clothes, toys, gift cards, thoughts/prayers, the gofundme (shout to Syd.), the 5K (shoutout to Meg and Bold Dog Trainng), the website thanks to my cousin, Amy, people wearing her shirt, the Dunkin Donut crew, KU game shout out, the foundations that have helped us, therapists, everything. Everything has kept afloat and we can never thank everyone enough.

Quincy continues to be cancer free and we thank God every day. We know we're some of the "lucky" ones who's child ONLY has ALL. Our grief for what we lost over the last year with Quincy but also Josie and Calvin will never compare to those that have lost a child and we know that. It's never lost on us how blessed we actually are. This. Rocked. Our. World and we are forever changed. But we will come out of this stronger. I definitely get in my own head on all that has changed with Quincy but she's still here and that's all that matters. We will get her completely back one day. We see snippets of her feeling good and I long for the day where she feels great and feels at ease. I still cry almost everyday and that's ok.

For the sake of anyone who reads this, Ill cut it off now. But thank you for reading, thank you for being there for us. Please continue to pray for Quincy. We still have 14 months of this battle. So, here's to year 1 down. May year 2 be less eventful, I hope I remember more of it!

With love and hope,

Katie