Most of you already know, but for those of you who do not, let me start this entry out by saying that his MRI on January 9th was CLEAR!! It showed no evidence of new or existing disease. Thank you Jesus! Thank you everyone for all of your prayers for him. He did very well with it. He had his little dinosaur brave gown on and he didn’t even need versed to calm him. He walked like a big boy with the nurse and anesthesiologist holding his monkey and Superman blankets in his arms. I was so proud of this little 3 year old. I had every intention of putting an update that day while I was waiting, but I found myself emotionally exhausted. I could do nothing but watch TV, drink coffee, and close my eyes in attempt to push all of the fear away. We knew we wouldn’t hear answers that night because his scans were later in the day, but when it was 11am the next day and we still had not received a phone call- I stalked the office until I got the results. And thankfully they were good results. That was the worst couple of days filled with anxiety and stress for Chris and myself, and our family too I’m sure. Even when we got the results I didn’t feel relieved or like a weight had been lifted. I hope to one day feel that way, but I’m not sure if that ever happens.
A friend asked me not long before his scans when we got the “all clear” from the doctors that everything was good. I explained to her that it doesn’t really work that way. I wish that it did. I wish we could say that he’s done with chemo, his scans are good, and that everything is over and done with. But Cade will be followed closely. He will have another MRI in April and then every 3 months thereafter for the next 2 years. They do this because kids that relapse have the highest chance of doing so within the first 2 years off of treatment. If his scans remain NED as they say, which means no evidence of disease, then he will move out to MRI’s every 6 months for another 3 years. Once he reaches 5 years and is NED then at that time he will move to annual scans for another 5 years until he is 10 years post treatment. So truth of the matter is that this is our life now. It’s never really over. We just have to try and adjust to some sort of new normal for our lives now and do our best to not let stress and fear run things. 🙏🏼 I have also learned that I need to stay off of group support sites, because as great as they are, they are terrifying. Full of sadness. Kids having all sorts of long term effects and issues from their chemo treatments and so many stories of relapse or worse. I’ve decided I just can’t. I have to focus on the present. Live in the present. Not in the constant fear of what “could” happen. I have to believe that Cade has beat this and that he will be one of the success stories. That we will never have to look back or experience any of that again!
Cade has been doing great at home. We have slowly been getting rid of things, which is wonderful. I got him off of his marinol and kytrel, so now he just takes his CBD oil and vitamins every day. His magnesium levels are getting better so hopefully he will not be on that supplement to much longer. He had a PT evaluation and they felt that he looked great and was not showing any issues requiring regular follow up. So he’s done wearing the brace and no longer requiring any PT which is fantastic. He continued to eat better little by little. We had gone down to 2 cartons of formula when his tube was replaced and then the day of the MRI I had talked to the dietician about going down to only 1, which we began the following night. After about a week of being on 1 carton, he was at the end of eating dinner last Thursday and gagged. This made him throw up, and I think the feeding tube must have migrated or been sitting funny at the back of his throat because next thing I knew, he threw up again and out came the tube like a little slithery snake in to his bowl of vomit. I was shocked. I didn’t think that you could throw up an NJ tube. I didn’t know what to do, so I followed my initial instinct. I grabbed scissors, snipped the bridal tie around his nose, and pulled the tube out completely. And to no surprise, super Cade tolerated this like a champ. It can’t feel good to have a feeding tube pulled back in to your mouth and up and out of your nostril, but it was quick and as soon as it was done, he was fine. I took this as a sign. This was another challenge to see if he would eat even better without the tube. We were coming to the hospital today anyways, so the nurse Friday said that they’d have us come in for a weight check and decide from there.
So here we are today, Monday, sitting in pre-op waiting. Not waiting for his NJ tube to be replaced though. Cade’s weight was the same as it was on the 9th, which means the feeding tube is staying out! Yay! But today is a BIG day. Today we are sitting in pre-op waiting for Cade to get taken back to the OR because Cade is getting his central line removed!!!! After today, he will have no lines anywhere in his body. We are all so excited! Well Cade’s not super stoked right this minute because the OR is 45 minutes behind schedule and this poor kid is starving! 😔 He just keeps saying he wants to be done so he can eat. But I’m hoping when he wakes up it will be real and he will be thrilled. I can’t wait to see his reaction. His blood counts have been great. He has only needed one transfusion since being discharged last month, which is amazing! They checked his blood counts last week to make sure he would be okay to get the line out as scheduled and wouldn’t need transfusions before hand. His platelets were 70! Wooo hoooo! That’s the highest they’ve been in forever. I was so happy when I learned these results. So it’s happening. Today (hopefully very soon). He is one more step closer to feeling like himself. He has cute little chubby cheeks again, his peach fuzz is coming in more and more every day, he has small eye lashes, and his eye brows are getting some peach fuzz too. My sweet Cade. Powering through like the amazingly strong super hero that he is.
He should be going back shortly. Only an hour and a half past schedule. Ugh. They said it’s a fairly quick procedure. Hopefully it’s quick and smooth. Please continue to keep Cade and our family in your thoughts and prayers. And as always, thank you to all of his prayer warriors! We love you all! 🙏🏼 ❤️
Our Warrior Journey 