Tuesday, September 20, 2011


I'm assuming (hoping) that most of you who read our blog haven't had much experience with radiation. So here's a little explanation of our daily routine...(I don't have any pictures, but one of these days I will take some)

I get up in the morning and get ready for the day. When it is time to leave, around 7:10 am, I get Annabelle out of bed. She is still in her pajamas and wishing she was still sleeping. She searches around and finds some socks and shoes, a jacket, her favorite blanket, a stuffed animal, and ususally some accessory for the day as well. For example, today she wore pink butterfly wings! Annabelle can't eat or drink before radiation because of the sedation, so that saves time. I try and grab something I can snack on while she is getting her treatment so my head isn't pounding too hard by the time we get home. Obviously it can't smell or that would be torture to the poor girl, so no home cooked breakfasts for me. Usually a piece of fruit or some cereal in a baggie.

I load Annabelle up and we drive up the hill to the Huntsman Cancer Hospital. FREE valet parking is as wonderful as it sounds, and then we head in. I tell them Annabelle's name at the front desk and then we walk ourselves back to the nurses station. They tell us our room number and we go back and settle in. Usually they have a TV/VCR set up for her and she can pick a movie to watch. We wait until the anesthesiologist comes in and has a little visit with us. When they are ready, I wrap Annabelle in her blanket and we walk back to the treatment area. We stop at the desk outside the vault and Annabelle has to say her name so they make sure they have the right kiddo, then we head in.

We go to vault number 5. Yes, they are called vaults, not rooms. I won't tell you what I imagine when I hear the word vault! Anyway, they always have Annabelle's vault decorated with princess and fairy stuff. It helps to keep her distracted from all the equipment while they administer the sedation. They also let Annabelle play with the controls on the machine and move the gurney up and down and in and out of the machine. She enjoys that! Then very quickly the anesthesiologist (if he knows what's good for him) pushes the meds (propofol and remifentanyl) through her line and she immediately goes limp. Like, (I hate to say this) dead limp.

I hated today when the anesthesiologist messed around trying to hook up all her monitors first. She only became anxious and upset, plus he made her come out of the sedation more slowly today and she was a beast!!! Which is why I say if they know what's best for them they do it quickly. Otherwise, they get an ear full from mama bear! Once she is out the techs help me carefully lay her down into position. I really don't like seeing her in that state. It's such a cold look to me. Being moved and situated by others while completely unconscious. I admit, it's a little creepy.

Every day when I walk out of the vault I think the same thing...I wonder if that pit in my stomach is because of seeing and having to leave my daughter in that state, or if it's because I am so hungry! But either way, my tough mom face is on and I head back to our exam room to wait.
While Annabelle is in the vault, usually about 30 minutes, I eat my snack and wait for her to come back. I can leave and go to the Bistro or the gift shop or anywhere else I want but I don't like to. I want to be there just in case they need me and I wouldn't want her to get back to the room and me not be there!

One time while I was waiting I heard an overhead page for a Dr to come to vault 5. My heart sank and I immediately worried that something was wrong! I jumped out of my chair and went to the nurses desk and asked them to tell me who Dr so-and-so was and why they were being paged to the vault my daughter was in! Turns out, they sometimes have to review films (whatever that means) so that's all it was about. Then I apologized that mama bear had come out and made my way back to our room. It doesn't matter how many times it happens, my heart still stops for a second when I hear a page to vault 5!

When Annabelle had her simulation appointment they made a mask for her. I heard them talk about making a mask, wearing a mask, yada yada yada but I had no idea what it was for. It wasn't until I saw pictures on another cancer friend's blog that I learned what it was all about.
It is a plastic mesh type mask that is formed to her head. It is placed over her face and then (don't be freaked out mom!) bolted to the table. Yes, my daughter's head it bolted to a gurney. It is to keep her in position so the radiation goes to the exact right spot. She also has a little pinpoint tattoo on her chest for lining up the machines.

I always leave the room before her mask is even on, but maybe one of these days I will be brave enough to ask if I can see it being done. Truthfully, though, I don't know if I could handle it! When she is finished the anesthesiologist carries her back to the exam room and she finishes waking up. Normally she is quite alert and does great. They check all her vitals and we wait for 30 minutes and then we are on our way.

Annabelle always makes a scene waving and saying bye to everyone as we make our exit. The valet brings our car, we load up and back down the hill we go. When we get to the Ronald House, Annabelle is hungry and wants some food! It's only 9 o'clock in the morning and I feel mentally, emotionally, physically exhausted already. Some days we then go to clinic for chemo, labs or transfusions, or we are admitted for inpatient treatment.

I then pray that this treatment kills the cancer, but not my daughter. That's the reality of our life during radiation. And the sad part is, we are only on day 6 of 28. The side effects of radiation haven't even begun. Some won't hit until 6 weeks after she finishes. I am so grateful she has the good attitude that she does. I couldn't do it without her sweet smile!


Heather said...

I used to go with my dad to get the radiation. We called his mask his Hannibal Lecter Mask. It helped the nerves to joke about it. It is comforting to know how careful they are about getting the radiation ONLY where it is NEEDED. I hope Annabelle continues to do well with the treatments, and if you ever need anything I am just a few miles away!

Jenny said...

We will be praying for you and Annabelle during this time. We love you both.

Rachel said...

Sally, Sally, I feel humbled and repentant after reading this post. If God can help you through your trials, surely he can help me with mine.


Connie said...

Man oh man. Radiation sounds so much harder for you guys. I am sorry that you have to go through the entire sedation process.

Our Dr. said that kids don't get fatigued from radiation like adults do, so that is one bonus! Jackson has been doing great- and still no ill-effects on day #10.

I wish Annabelle could come and see Jackson do his radiation (and you too). Then maybe it wouldn't be so scary to you both. Jackson LOVES radiation... the people are so kind, and he says it's "easy peasey, lemon squeezy."

Good luck!

Anonymous said...

Annabelle and you were both an inspiration Monday, and her hug made my day!! You are my hero. Let me know what you need for your "new normal" and I will do all I can to get it for you!

Andersen said...

We are hoping and praying for the best for you guys. Hope this time goes fast and your little sweet heart stays healthy and strong. Our prayers are going out to you guys.