The rain brought in more cold weather. It was in the 40’s when we woke up this morning, so we all bundled up and headed out for the day! (side note: Caleb rocked those fuzzy Batman pants ALL day!)
Caleb’s day started with his weekly biometrics and a blood draw. He has maintained his weight through radiation which is great, and he even grew a little taller since last month.
Caleb had his radiation appointment next (#23… only 7 to go!) and I got the opportunity to watch his treatment today. I went back to the area where they monitor everything, and one of the radiologists talked me through his treatment. I wasn’t allowed to take pictures, so I’ll describe what I saw. There was a video monitor with a view of Caleb in the treatment room. No one can be in the room with Caleb when the radiation treatment is happening, so he is monitored the whole time on video. The anesthesiologist is monitoring his vitals from right outside the room. Along with the video monitor there is another monitor with an image showing Caleb’s targeted treatment area. It is extremely important that Caleb is laying in the exact same position every single day so they can make sure the radiation beams are hitting the right area. So on the screen you can see two overlapping images. The first is the image they took of him the very first day they lined up his treatment, and the second image is the one they took today. They compare the images by looking at the bone structure and making sure it lines up exactly. The other thing that helps them line him up the same way every time is the mask he wears during treatment. It’s a mesh like material that was fitted for his face and helps them get him into position. If the images don’t line up perfectly they are able to move the table (the guy was controlling it remotely) so that he lines up perfectly. With the combination of the Proton Beam and using this imaging method, they can target the beam perfectly every time within 1 millimeter. Sounds pretty darn precise to me!
The monitor also showed his tumor bed plus the margin around it (they treat the tumor bed plus the margin) and another part of the screen showed the exact area and how many lines of radiation was hitting a certain area at a certain time. I won’t pretend that I understood or remember everything the guy was showing me, but I was in awe of the precision and care that goes into these treatments. When you look at Caleb’s tumor area plus the margin, the margin ends just where his eye socket is beginning on his right eye. I am so thankful St. Jude has Proton therapy as an option, because with the Proton radiation they are able to stop the beam so that it does not penetrate any healthy tissue. In Caleb’s case, this would mean other healthy brain tissue but also his vision would most likely be affected if they were using any other method. There aren’t many Proton therapy centers in the country, (I think 27 in the whole US), so we are very thankful St. Jude has this.
Lastly I’ll just note that you could see the radiation beam on the monitor. It was a large green beam. I thought it would be scary to see Caleb laying on the bed getting his treatment, but it wasn’t scary at all. It just looked like he was sleeping with a laser on his head. I was honestly just fascinated by the whole process.
The first treat Caleb asked for when he woke up today was skittles. He is definitely enjoying all of his Halloween treats!
Tonight at our housing place they had a band playing outside on the patio, and also free funnel cakes. Of course I thought, “let’s just go check it out”, not thinking that eating funnel cakes would totally ruin our appetites for dinner. Ooops! I guess we win parents of the year for the Funnel Cake dinner ha ha! They were delicious and totally worth it! We ended our evening by letting the boys run out all of their energy on the playground!
As the end of another week comes to a close I can’t help but think about all the sad events that happened in the news this week… everything from children getting hit at bus stops, to shootings, to car accidents. I really feel for the families that experience those sudden tragedies. I thank God every day that we didn’t lose Caleb suddenly. He has given us the opportunity to live life to the fullest every day. We don’t take a moment for granted. No matter what the outcome will be for Caleb, we have been able to make the most amazing memories, and we aren’t done yet! I pray for the families that weren’t able to do the same with their loved ones. We have been through a traumatic experience, and a lot of hard decisions, but we definitely do not have it the worst. I keep all of those families in my prayers tonight as I thank God for how lucky I am for my family and another fantastic week.
You have the biggest heart Christina and are an inspiration for us all! ❤️. Big big hugs! Rachel liked Caleb’s fuzzy pants, lol
What a blessing you are to your family Christina…life is short so eat the funnel cakes 😋😘 keeping your family in my prayers and enjoying reading your blogs every day. Big 🤗 hugs and prayers for the whole family and of course the other families going through these hard times.
It sounds like a busy but interesting day! Hoorah for the funnel cakes! Big hit! Susan Willis
I read your journal each day and I’m of the opinion that there is more than one super hero going into that hospital each day. As a grandfather my heart swells and aches for what you, as a mom, are going through.
May God continue to wrap you in his abundant grace, strength and love.
Thank you for sharing your journey. Continuing prayers .
I am so grateful to God that you all were led to this place at this time. I’ve said it before but it bears repeating: Christina, you all are facing this with such strength, faith, poise and a positive attitude. Your examples will help many.