First and foremost, I can’t remember if I let everyone know this already or not, but the spinal tap was clean of any cancer cells!! Thank you God! Tuesday nights chemo doses went good, we had no allergic reaction to the Etopocide, which is great! However, between the Cisplatin Monday night and the Cytoxan he received both Tuesday and Wednesday, he has been pretty nauseous and miserable. He has not eaten since lunch on Tuesday and has barley drank either besides a few sips here and there. They say the mix of these drugs can be pretty nasty and this is not uncommon that he feels this way. Yesterday he was coughing and dry heaving most of the day and then finally it got the best of him last night and he vomited. We had been trying a different mix of anti-nausea medications to see what would work and help him the best. Yesterday afternoon he had a visit from Aunt Shalina and we walked down to the Healing Garden thinking it would be good for him to feel the sunshine on his face and get some fresh air. Shalina and I were more excited about this than Cade was. He wanted to no part of it telling us he wanted to go back inside as soon as we got out the doors. We did a quick lap (I told him it was the way we had to go to get back inside…shhh) and went back in. Then Grandma visited in the evening and he got some new spider man pj’s (which he’s had on all day today) and read books. I continued to try and get him to eat and was unsuccessful. I was at the point of even letting him eat a cookie if it meant he was going to eat. As soon as the package opened and he got the waft of cookie smell, he gagged. I put it away. He was willing to try Grammie’s famous Chex mix, but as soon as it hit his mouth he was gagging and dry heaving. My poor baby. At that point I told him it was ok, lets not worry about it. He tried, bless his heart. He did have a good night sleep though, which I was grateful for.
This morning I was so hopeful when he awoke at 5am ready to start his day asking if the kitchen was open. It does not open until 7am. So we talked about where the kitchen people go and why it’s not open. Haha. Then we took a walk to the water room where he remembered seeing Gatorade in the fridge and brought one back to our room. We played in the play room about 5 or 10 minutes and then headed back to the room where he drank none of the Gatorade and fell asleep by 8am. I was happy that he got the exercise and walked around a little. Today hasn’t been much different from the nausea standpoint unfortunately. He still hasnt eaten a thing or drank much at all. He has thrown up a couple times today and took another long nap from about 11-3pm. All in all, its been a restful day for him, which I’m grateful for. I’d much rather him be sleeping comfortably than awake miserable and vomiting all day. We have watched Despicable me at least twice. Maybe three times. I’ve honestly lost count. Haha. We tried to do art therapy, but he wanted nothing to do with in once she had the paint and paper all set up for him. He’s moved from the bed to the couch and back and at least walked a couple more times with me to the “water room” to look in the fridge more and help me fill my water bottle up. I’m happy with that.
We haven’t had any more vomiting since he woke this afternoon…knock on wood…though we’ve had a couple close calls that had the nurse and I in position and ready to go 😉 We have to do “spongey’s” as we call them which are little spongettes that are dipped in a special mouthwash to swab around their mucosal cheek area in their mouths because the medications, especially the one he got today- Methotrexate, is almost guaranteed to cause some form of sores in the mucosal lining. Be it the mouth, throat, GI tract. This totally sucks and I’m absolutely dreading this happening. So we are trying to do this to prevent/minimize this side effect by keeping the mouth as clean from bacteria as possible. He’s supposed to do this 4 times a day. He hates the spongey’s. Hates! Always tells me he wants to do them in a few minutes. Anything to delay a little. If we get 3x a day I’m happy, and so are the nurses. He’s also had some diarrhea that started yesterday too, so we are dealing with “juicy farts” as we call them and his scence of smell is heightened due to all of this as well so he freaks out the second the diarrhea comes out in the potty and wants me to flush it instantly. We tried a couple more IV medications this afternoon that seemed to help him for a little bit. He perked up and was being his silly giggly self. We even thought maybe, just maybe, he would eat. But no. He did drink about 1/4 of his bottle of Gatorade finally though, so that’s something. He actually let me return Despicable Me3 this evening and has moved on to Polar Express. The nurses were laughing at his choice. I said I’ve always wondered if I was the only person with children who love Christmas all year around. Literally. I’m talking, they save their singing cards from their Grammie and I’m driving in the car in May listening to “Deck the Halls” playing from the backseat, they walk around the house singing random Christmas songs, they request jingle bells and Santa is coming to town as bedtime songs when we sing songs at night, and they love watching Polar Express. So it’s no surprise to me that it is Christmas in July in room 88 tonight!
A couple of my signs today…which you all know by now that I’m famous for closing with. One was a text sent to me from my mother. She was sharing with me that as she was driving down a certain road this morning on her way to work, she saw a red cardinal fly over the front of her car right before she came to the stop sign. Then it dawned on her that she realized it was the third time this week that this has happened on her drive to work. The red cardinal is known as a divine messenger and she believes that God is telling us that he is here with us. I also know my gram, as well as Chris’ grandma, loved cardinals. Any time I’ve looked out the window or been outside and seen a cardinal in our yard I have always thought of my Gram. She never got to learn of or meet Cade, but I know she watches over our house and checks on him and us often. When I see cardinals I smile. The other thing today that made my heart smile was another beautiful song shared with me from my brother. It’s a song by Micah Tyler called Different. The video is also beautiful and the story this man shares as the background to his song at the intro of it is heartbreaking. If you’re moved by music like I am, I highly recommend you check it out- https://music.youtube.com/watch?v=xUT4trsrBCw
Chris and I continue to be absolutely astonished and overwhelmed by the amount of love reaching us from every and any angle possible. It is filling our hearts with so much joy and continues to make me cry. I read a perfectly fitting quote that speaks to this-
There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love. -Washington Irving.
My tears lately have been more of happiness than sadness. They have been tears of unspeakable love felt from everywhere. The outreach from the T-shirt’s alone has blown our minds! The benefits and things that people want to do, both from close family and from strangers. The sweet gifts we’ve received from people- gift cards, packages, etc. The thoughtful delivery to Cade’s room from The Doyle Family. A sweet surprise of a visitor today in my room who was a friend of a friend and she just so happens to work here. The unbelievable, and I truly mean UNBELIEVABLE, amount of support from Nature’s Scholars where the boys go to daycare. In honor of Cade, they have been holding a bake sale this week. Their “Cookies for Cade” bake sale has raised over $3,000 as of today and still has one more day to go to close out the week. I am absolutely speechless!!!! If you are in the mood Friday for some sweet treats, please stop by this amazing facility in Johnsburg and say hi to these incredible people, staff and family, who have shown so much love for my boys and for our family. We truly cannot thank our Nature’s Scholars family enough for all of your love and support! ❤️ ❤️
My sweet boy is sleeping peacefully. I’m praying for a better day for him tomorrow. Praying that the nausea will finally begin to subside.
Our Warrior Journey 