** Wednesday July 25th 2036**
-taylors pov-
We arrive at the radiation center at the children's hospital where she will be receiving her radiation therapy. Her treatment team have been considering different types of radiation therapy, because aperently there are different types. I thought that radiation was radiation, but aperently there are proton based and photon based. Then you can have internal and external therapy, as well as different types of beams receiving the therapy.
we have agreed to what they called proton beam radiation therapy using image guided radiation. Proton is a more expensive type of radiation therapy, but it has fewer risks for the surrounding tissue, so what insurance doesn't cover we will cover us selves. It's a privileged situation we are in for sure, but in this case, I'm going to use any privilege I can to get my baby girl well again. It's so sad that money is the factor that gives you access to life saving treatment in this country, but that's how it is in today's system.
They call us into the office where a male doctor is waiting along with a few other people "hi I'm dr. henry Torres, and I'm what is called a radiation oncologist that specialize in treating children just like you" he says as he talks to kenzie. I love it when doctors talk directly to her too.
Joe and I sit down on the chairs while kenzie sit in her wheelchair.
"i'm a radiation therapist and work closely with dr Torres. My name is Gina carter" the female in the room says.
They both go on to explain what their job is. Dr Torres explains that he is a doctor that first specialized in radiology, then specialized again in oncology and finally children. He is the person that's going to oversee her radiation treatment for the full six weeks. Then the radiation therapist is the person that gives the daily radiation treatment and make sure that she is in the right position for each treatment. its someone that works as a medical physicist and a dosimetrist who has planned and made sure that they are using the exact right dose of radiation. They work as a team to make sure that the treatment is as safe and effective as possible for the kids.
"that's a lot of weird names for jobs" kenzie says and scrunch her nose "it is. What do you want to be when you grow up" the radiation therapist asks her, and she smiles "i'm going to be a nurse that works with other cancer kids because I know how much it sucks" she says and sigh dramatically. She has been talking a lot about that, how she wants to help kids just like her because she is knows what it's like being a patient.
Dr Torres us a lot of questions about her medical history both before cancer and after. What treatments she has done, what side effects she has had and all that. Obviously, he has it all in his computer, but I guess they just want to confirm that we have gotten the information and there aren't things that are unclear. I appreciate that though because with such a serious illness it's important that we understand everything that's happening with her.
"The tumor is on her liver so the goal of the radiation treatment is to make that shrink so the removal of the tumor will be easier once it's time for surgery. They want to make sure it's shrunken so first of all its easier to remove and make it less likely that you will need a liver transplant" he explains.
Then we go to take an MRI of her abdomen so they can figure out where they are exactly going to aim the radiation. We have to stand in the other room and watch her through a glass while they are doing it. She is nervous, I can see that, but she is doing what they are telling her to get it over quickly. The machine is loud, but it gives them a good image of her insides.
Since we are by the screens the doctor shows us where the tumor is.
We get back to the room we were in before and kenzie have to lay on the bench while the oncologist and therapist figure out exactly where to mark her skin. He holds up a marker "this is a semi-permanent marker. We need to make a black dot where we are going to aim the radiation so we can be more accurate. I need you to not scrub the dot because that can make it go away and we will have to do the scan again. But of course we won't be mad if it goes away though so don't worry about that" he says after he marks her skin in the correct position.
"The type of radiation we are giving you is called proton beam radiation therapy using image guided radiation. I know that's a lot of complicated words so I'm going to explain it to you so you can understand it" he tells kenzie.
Photon beam radiation therapy Is the type of radiation they are giving her. It uses what is called protons instead of the usual photons which is what we find in X-ray machines. Protons is a more directed type of radiation because they only travel a specific distance, which means that the healthy tissue behind the tumor is exposed to little radiation. Even the healthy parts in front of the tumor get little radiation. This has less risk of tissue damage than photon therapy which is why we agreed with the doctors to do that. "All off this means that this special type of treatment means that the radiation can be delivered to the cancer while it does less damage to your healthy tissue" he explains to her and explains things to us too in more complex ways. I like that he gives kenzie a simple verson of it but gives us more details.
"While we are giving the radiation, we are going to do what we call image guiding which is something called a 3D-CRT which is like a CT scan. We do this before every treatment she is having so we can be extra careful that we are focusing on the tumor exactly and not all your healthy parts because that isn't helpful"
Now we follow them into the actual room where the machine is "so you're going to lay on this table, and we will put the mold we made over your belly so we can keep you perfectly still. That's really important so we don't hurt the healthy parts of your body" he explains to her. Then he points to different parts of the machine to tell her what it is.
"This machine is called a linear accelerator that it's going to give the radiation into your tummy and to the sick part of your liver. The liver is really important for your body do we want to make it feel better so you can feel better" he tells kenzie and explains how the wide arm extends over the treatment table where the radiation will come out of. If they need to the arm is going to move around the table to hit the right places, but it will never touch her skin.
"Something cool about it is that the radiation is invisible, so you won't feel anything while its going into you which is pretty cool. But the machine makes lots of noise, almost like the vacuum, you know when your dad does that around the house and it makes a lot of noise, but it's not dangerous" he continues to explain all the different parts of the machine.
Then he shows us where the radiation therapist and we are going to be while she is in the machine. We need to be a separate place, so we don't get hit with radiation too. There is a tv there so we can watch her and then the therapist operates the machine. "There is a special intercom that you can talk to us with if there is something wrong or you re scared. If it ever gets uncomfortable or you feel ill, please tell right away so we can stop the machine and help you if that is needed" the therapist tells kenzie.
They have her lie on the table to try the mold which fits perfectly. It clicks around her stomach and into the table to hold her in place. It seems drastic but to me it's actually comforting because I know they do it to make sure that she is still enough to not have the radiation hit where it shouldn't hit.
Kenzie is starting to get really tired, but we have to go back to the office for a few final details. "We need to talk about the Side effects that might happen during your treatment kenzie so you know what can happen" he explains that basically the expected and possible side effects are pretty similar to those you can have from chemo. We are to handle them the same way and come in right away if there is something going on.
"then I will see you on monday miss Mackenzie. You will be here for at least half an hour, but the treatment itself takes only a few minutes. What takes the longest is all the things we need to do beforehand okay?" the doctor says and kenzie agrees.
**
By the time we get home we are all exhausted from a few hours at the hospital. It took a while but it's so important to go over all of this. Not only for the sake of them getting their information but also for kenzie to get to see what it is like beforehand. She got to touch some of the stuff and shown all the different things that she wanted to see. I think it made her more comfortable with the whole thing and that's what we want, we don't want her to be scared.
"When can we get the new kitten?" she whines as we get her to the couch and her body slump together as she is really exhausted. When she gets fatigued, she is like a noodle, her muscles get so tired. "If your numbers are even better on the next blood test then we can get the kitten. But we can't get it before your immune system is stronger remember?"
I only get a grumpy grumble in response, but I wasn't expecting more either. I put a blanket over her, a thin one though since its summer, and let her get some rest.
Joe and I meet in the kitchen for some coffee "that was a lot to take in for one morning" I say and chuckle. "Medical talk is overwhelming that's for sure. We have a lot of practice though, we got plenty of medical knowledge when aurora was in the NICU" he says, and I sigh thinking back to those days.
Thinking about the days when she was so little, and we didn't know if she was going to make it makes me appreciate who she is now even more. There was no guarantee that she was going to pull through and there was no guarantee that she was going to have disabilities or not if she made it. Now she is a pretty healthy 12-year-old, almost 13-year-old, she still has problems with her lungs, but she does her nebulizers in the morning and goes to checkups. So far, its stable and that's even with the high intensity training she does for gymnastics.
That's where she is right now, at gymnastics. she is an elite gymnast and train long hours. We were hesitant to let her work out this much because we don't want her to put too much pressure on herself, but on the other hand that's what she wants. She wants to work towards getting to the Olympics and we want to support her in that. We don't push her or promise her that she is going to get there, but we are supportive and cheer her on. We make it clear that there is no guarantee she is going to make it, but by the way she is placing in competitions she is doing well. She placed high at nationals this spring and is now on the national team. That's a huge step in the direction of getting what she wants in the end.
It's also a huge ting for her to be still training at the same gym where she was sexually assaulted because that means that she is working on feeling safe there again. I've heard stories about people that have been sexually assaulted in gymnastics quitting the sport all together because it's too much, but that has never even been something that aurora has wanted to consider. We have tried to tell her that it's okay if she felt like she couldn't do it anymore, but she furrowed her eyebrows and told us point blank that if she quit it would mean that he would win, and she wouldn't let him take that away from her.
"Aurora is just... shining these days and that makes me really happy. Going from screaming bloody murder and wanting us to let her die, to spending all her time at the gym training and doing what she loves. It's incredible to watch how she has bounced back. I'm a proud mommy that's for sure" I tell him. And he agrees. "She is a fighter. Stubborn just like her mom but that works to her advantage now" he says, and I playfully hit his arm. "you're just as stubborn joseph"
Aurora and Ellie aren't home that much anymore, which is hard as a parent because we want to soak up all the time, we can with them. But it's also good to see them growing into their own person. Aurora is at the gym all the time or hanging with her friends either here or at their house. While Ellie is usually either at her boyfriend's house, here with him or they are out with their friends doing something fun. Normally she would have dance almost every day, but because of her injury and the pain that has caused her leg she isn't able to dance at all. She has tried to do some basic barre in the basement to see how it feels, she can do things on her good leg but the other one hurts too much. Hopefully she will be back in the studio after the nerve transplant, we know how much she wants that she keeps talking about it all the time. But I can also see that there is something she isn't telling us, she is hesitant and something is up with her.
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