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Well, I am a little late with my post. I think the end of treatment was anticlimactic. I don’t know what I was envisioning really but, it just came and went so fast. It was something that I built up in my head for so long. It was something that my whole body ached for honestly. May 26th, she took her last chemo pill. When the timer went off reminding to give her medicine at 8:00pm, I cried. It was a wave of emotions really, mostly happy, a little bit of shock, and a lot nerves. When you get told your child has cancer it is really hard to see the light at the end of the tunnel so at the time, May 26,2024 seemed unattainable. Over the last two years, we’ve had to mourn a lot of our children’s lives. When you are in fight or flight for so long, it’s really hard to come down from that. I think I haven’t been able to update our blog because I’ve been on an emotional rollercoaster since port removal, last spinal tap, last chemo, ringing the bell, all of it. We are obviously so so grateful for her to be done and to start to feel normal again. But, I think now more than ever we are constantly slapped in the face with grief. I feel like we hit the ground running to save her life that we couldn’t fully comprehend what was happening. Sure, we had moments throughout treatment but we didn’t know what watching your child fight something that could kill her would look like. And now we do. The fear that comes along with it coming back is literally something that I can’t handle at times. When I look at her doing things that kids her age get to do, I am instantly filled with gratitude. It’s something that I didn’t feel with Josie or Cal. Of course, I love watching all of my kids grow, smile, laugh, accomplish things. But there is something uniquely different about watching Quincy. She is getting stronger every day. Her body doesn’t move like it did on treatment. She has more energy, her moods are getting better, she is smiling more. It will never be lost on me how far she has come. She started Kindergarten last week and I wasn’t sad. I know most parents dropping their kid off for Kindergarten probably had the sadness that comes with your child growing up, just like we did with Josie. But, we are so freaking grateful to watch her put her little “pack pack” on that is almost bigger than she is and go off into this great big world because that means our girl is still here. I love that she is thriving and enjoying school so far. I love that she is starting to not look at herself like the kid with cancer. She doesn’t introduce herself as “I’m Quincy, I’m 5 and I go to children’s mercy.” She doesn’t talk about Tubie stuff anymore. Her body is not in pain all of the time like it was (although she still does have some aches and pains) she is sleeping better. We didn’t realize how uncomfortable she was when she had her port. But the day it was removed she rolled to sleep on her right side for the first time in 2 years. Tom still sleeps on her floor as he has since she got diagnosed and he can’t believe how much she moves in the night! She is able to stay up late, the night after she got her port out she stayed up until 10:30 running around the culdesac. I couldn’t believe it! She still has a lot of trauma that we are working through. We can see her retreat in a lot of situations. Her avoidance means word vomit, she will just start saying mean things to try and avoid situations that she is scared of or is unsure about herself in. She gets a look on her face that breaks our hearts. It is the look she would get when the room would fill with doctors and nurses. She knew something was about to happen to her. That’s a look that I will never forget.
When I look at Quincy, I am filled with so much gratitude. And then I am quickly overcome with fear and anxiety. I think, wow she looks so good, no one knows what she’s been through. No one knows she was bald and weak for so long. She’s happy and looks healthy. But is she??? Are her counts ok? I saw her limp, is her cancer back? She has a bruise, where did it come from? She isn’t hungry, is she nauseous? Her eyes look different, is she tired? Is she in pain?? If it’s back, how will we tell her? She will know so much more now, she will lose all her hair again, she will notice that more this time. She will once again, miss out on all of the things kids her age are doing. Would she beat it again? If she does, how will the rest of her life look? Will she be happy again??
It’s literally never ending. Trust me, we are trying SO hard to be positive. We are trying so hard to trust that she is always going to be ok. We are trying SO hard to move on and not look back. But it is SO HARD!!! In time, I am sure this will lessen and I look forward to that. We are constantly grateful for her strength and her health. We pray constantly that she always stays healthy and lives a long long healthy, normal life however she chooses.
We want to thank you all for ALWAYS being here for us. We don’t know what we did to deserve such a wonderful support system. We will never forget the kindness we were shown over and over. It truly kept us going. It still does. Please continue praying for her health. Please think of us if you ever come in contact with a family touched by pediatric cancer who may need support. And please, never forget what she went through and what all the children battling cancer have to experience and get involved whenever there is a chance to make a difference. Thank you.
We love you all. We appreciate you all.
Katie
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