Today started week 3 of radiation. The center was closed for the holiday so it was nice that we got to be home for a three day weekend. Cade has done great with radiation and anesthesia so far. He is a three year old creature of habit, that’s for sure. The nurses all laugh at the Proton center because he has his routine down. When it’s time to go back to the treatment room he has not wanted his music played. He decides on the fly if he wants to put one of his brave gowns on or if he just wants to take his shirt off once he’s on the table. He wants the mask for sleepy medicine when they have to do the poke (to access his port) so he doesn’t feel the poke, but not on the other days and he’ll tell them that. We take his special pillow and Superman blanket on the table every time. When he wakes up it’s a toss up at how angry and irritable he is, but he knows what he wants nonetheless. He wants 3 things every day- his clothes put back on. Apple juice. And to get in the wagon and leave. He often asks me at night whether he has to go to the Proton Center in the morning as he knows this determines whether he gets to wake up and eat whatever he wants, or if he is only allowed to have juice/water, popsicles, and jello for a short bit. He also knows his bedtime routine like the back of his hand and he will let you know if you forgot something. His creams, his spray that we spray his head down with, his medicine, etc. All things that we do to hopefully prevent skin burns and breakdown from the radiation. It’s adorable and incredibly sad all at the same time. No three year old should know a routine such as this.
Dr Hartsell did a repeat CT scan last Thursday. He had told me about it the week prior, explaining that on the mapping CT they could see the large tumor at the base of the skull that was pushing in to the brain stem and that since so much has happened since they did the mapping, he wanted to repeat the CT just to get a quick look at how things were looking now in that area as well as to see how the fluid in the ventricles looked. He came in once Cade was in recovery to tell me that the CT looked great and that the tumor at the brain stem had shrunk a lot. He gave me pictures the next day to show me. Not only could Chris and I not believe how big that damn tumor had gotten to begin with, but it was incredible to see how small it was now. The ventricles all looked better too and are much smaller. Thank you GOD! Cade had been doing well overall with the vomiting once we got him back on Kytrel for the nausea and they had weaned his steroids a little more last week too. After seeing how much smaller that tumor was now that was causing all the issues to begin with on the vomiting center, I wondered if he really needed the Kytrel anymore, so over the weekend I didn’t give it to him at all. He vomited once and it was only because the Zantac he had to take tasted bad and made him puke. Otherwise, he had such a good weekend of eating and no throwing up. I’m really hoping they’ll continue to wean the steroids again this week so we can get one more step closer to getting him off of them.
As Dr Hartsell projected, Cade’s hair began to fall out over the weekend. He had said about 14 days in to treatment, and sure enough it did. His beautiful, silky, thick hair that had finally really began to grow back all over his head, is now falling out in my hands and all over his pillow and clothing. Until now we were just following the routine. Going to and from the Proton Center in robot mode almost. But now it is all starting to feel real. Really real. Yesterday the hair thing was breaking my heart and I finally made him sit in the bathroom and let me buzz cut it down to peach fuzz so that it would hopefully be less bothersome to him as it continued to completely fall out. He was upset saying that he wasn’t going to shave it if Ry wasn’t shaving his and he cried. It made me so sad. Then they informed me Friday that his platelets were continuing to drop and that he would likely need a platelet transfusion this week and would re-check it Tuesday and decide. So sure enough, we went from the Proton Center to the clinic inside Central DuPage Hospital (which is conveniently across the street from the Ronald McDonald House we’re staying in) and sat there for a few hours for him to get platelets. They’ll recheck his levels on Friday to see if he will need a blood transfusion as well before we go home for the weekend because those levels are borderline too. So we’re back to this. My beautiful bald boy needing the help of transfusions in order to tolerate his treatments. Well soon to be bald. Right now he just looks like an old man who is bald almost everywhere with the exception of a strip of thinning hair across the middle back of their head.
Cade still has his sense of humor that just cracks me up. The way he explains things and reasons with me about stuff with such logic. It makes me laugh every time. I wish I could video him every single minute. Last Friday on the drive he told me that he wanted to listen to music that day on his way in to the treatment room. This made me heart smile. He told me he wanted to listen to Sunflower, by Post Malone. It’s from the movie Spiderverse. The boys are obsessed with this song. Today on our drive he said the same thing. Then a couple songs later he said “actually mom, I don’t want to listen to Sunflower. I want to listen to Broken Crown. It’ll be okay, there’s only a swear word three times.” I assured him that there probably is a clean version of this Mumford and Sons song that they could find. Haha. The staff gets a kick out of the songs that he chooses.
We are almost half way done with radiation. I can’t even begin to think about what lies ahead. A year of chemo just echoes over and over again in my head some days. A year. I’m freaked out that it involves putting Cade through another surgical procedure to put an omeya reservoir in, which is essentially another port but in his head instead of his chest, so that they can administer chemo through this port directly in to his brain. All I can think of is how in the hell is this the best treatment options out there for these kids. For my child. How is there not a cure by now. I can’t go down that path though. So instead, I just remind myself to take it one day at a time. Get through this treatment first, then focus on the next awful step of the treatment plan another day. Keep your strength. Keep your faith. And then I just talk to God. Or sometimes cry to him. Beg him to heal my baby and pray that I will never ever know what life would be like without him in it. Without all 3 of my boys in it. And I am given comfort and reminders that God is holding us and carrying us through this. I literally have seen a butterfly or a cardinal every single day since his treatment has began. Sometimes I see both in the same day. Yes, it’s spring, so maybe that’s the reason. But I don’t think it is. I’m pretty sure I’ve never seen this many cardinals in my entire life. A couple weekends ago we went back to Wancket Studios. Audrey, who had taken beautiful pictures of Cade in the middle of his chemo treatment, had reached out to me asking if she could photograph our family for us. I cannot thank her enough and I am so glad we were able to do this before he lost his beautiful hair again. As we left to go home, we were driving down the long dirt road to get back to the main road and I kept seeing something out of my peripheral vision out my window. I finally turned my head to look, and there flying right beside my car on the other side of the window, was a monarch butterfly. I could see it clear as could be and it continued to fly there for several more seconds, as if it wanted to be sure that I saw it clearly, before it fluttered away and in to the woods. Then just this past Thursday my mother in law text me to tell me that as I was pulling out of her driveway, a monarch butterfly flew right in to her garage, landed on the door to the house, and then flew back out. Amazing. You are with us God, thank you for continuing to show us that.
We got to enjoy time with family and friends over the long weekend. I was grateful to be able to get away with one of my dear friends for a group dinner to say goodbye to an amazing doctor that I’ve had the honor to work with. It was an evening full of laughter that both of our souls really needed. Chris and I both got to attend Ry’s preschool graduation on Friday as well. Thankfully it was not goodbye for us, otherwise I would have been a basket case as Natures Scholars has become part of our family and I love them with all of my heart. We are so grateful to everyone for your thoughts and amazing gestures that you continue to send to us. To the meals, the gift cards, fun gifts for the boys, touching phone calls and text messages. For your prayers. Thank you! Please, please continue to send your prayers up to God for Cade and all of our family. May God continue to bless and protect Cade through his treatments and always. ❤️
Our Warrior Journey 