Good morning. Things have been going good, so naturally Cade has been keeping me busy! I’m trying to squeeze in the time this morning to get an update out to everyone before another crazy day begins. Last update Cade had spiked his first fever ever. Well thanks to all the prayers and this little guys amazing strength, it lasted only that day through the night. By Thursday morning he was below 100 and continued to sit that day around 99-99.5, which is great. They aren’t concerned unless it’s over 101. If he were to have continued to run fevers over this, they would have to repeat the blood cultures every day that it continued and likely change his antibiotics around to figure out what is going on. Thankfully, we did not have to do any of this. He remained on the one antibiotic they put him on with the fever and once his blood counts began to come up and allow him to fight things off on his own, they stopped that antibiotic. We were so happy that it worked out this way and was a one day thing. Such a relief! As the week went on, he began to feel a little better each day. Eating bites of things here and there, drinking, and being his typical playful self. Our usual field trips all over the hospital continued, so at least we are both getting our exercise! Haha.
Sunday my mother in law came and stayed with Cade at the hospital so that I could go home and be at the benefit that my brother had organized for us at RJ’s restaurant. Once again we were blessed with a beautiful day for a big event, and let me just tell you it was quite a day! My brother and family put on the most amazing event ever. I am truly speechles at the amount of people that were there. Our hearts were beyond full. A huge thank you to every single person and company who donated items to support this fundraiser as well. There was an incredible amount of donations that my family received for the silent auction and the raffles, it was awesome. Thank you to every single person who came out to support us with your love and incredible generosity. Whether it was because you knew us personally, or because you knew one of our family members or friends and you extended your love and support to us out of your love for them. We are beyond grateful. Every single one of you helped to make this benefit the success that it was. You made it a truly priceless and unforgettable day for us and we thank you from the bottom of our hearts!
Chris was off Monday and Tuesday so I actually got to stay home for a couple days which was really nice. I got to spend some time with my Ry. Naturally he requested I make hamburger hand pies for dinner, his favorite. Monday he and I enjoyed a little breakfast date at Starbucks (his choice. Hah) and then I brought him to daycare. Then I did a couple normal things like laundry and going to the grocery store, relaxed a little bit. It felt good to be home. Then I got Ry early from daycare and we went to Stades to get some delicious corn on the cob for our dinner…and of course left with peaches and apple cider donuts. You can never leave Stades without apple cider donuts. It’s impossible! We went home, enjoyed our evening together, and then Ry went to bed and my sister came over to have a sister night. A good movie, glass of wine, and some delicious cheesecake. It was a perfect night. Just what I needed. Tuesday I got to go to the DMV to renew my license, as I had 4 days to do so at this point, and then it was back to the hospital. Chris informed me that Cade had been doing great, eating and drinking well, and that they were allowing us to go to the Ronald McDonald House and just come back and forth for the tests we had to have over the next few days. This was so exciting! We got over to the RMH Tuesday evening and got to spend yesterday enjoying walks outside, playing, and having lunch with Aunt Shalina. We walked back over to the hospital at 4pm for his hearing appointment, which he still is passing with flying colors! Thank you Lord! Then after dinner it was movie night at RMH in their movie room. This was our first movie night we have been able to go to when we are there, and it was so cute! They had different snacks, drinks, popcorn, blankets. We only made it about half way through the movie because he was getting antsy and over tired so we went up for bed.
Today we are back at the hospital. Today is a very big day. We are sitting in the MRI room waiting for Cade to be taken back. Today is a day full of tests. The most important of the tests is the repeat MRI of his brain and spine and a repeat spinal tap to look at the cells of his spinal fluid. The results of these tests will show us if he is responding to the chemo treatments he has had so far. We know what his pre-treatment scans looked like. There was the small spot of tumor still left that we knew Dr Ruge had to leave behind. The 1%. There was nothing seen in his spine or in his spinal fluid. What we want to see today is that there is nothing seen anywhere!! That the small spot in his brain responded to the treatment and is gone. What we do not want is to see the spot is still there or that there are new areas of concern in his brain/spine/or spinal fluid. Based on the scan results, it will determine what branch of the trial and treatment we go forward with. If everything is gone and the spine and spinal fluid remain clear, then they view this as a complete response to the chemo treatments he just had and he will then move forward in the trial and be randomized to get either 1 or 3 rounds of the heavy chemo with the stem cell transplants. If, God forbid!, there is anything concerning or remaining, then the direction of treatment is that kids in this bracket receive surgery again if it’s necessary, and then 2 more rounds of the chemotherapy that Cade just completed 3 rounds of. Then after the total of 5 rounds, they would move forward with the heavy dose chemo rounds. We are praying to God that everything is gone! Cade is an incredibly strong young boy and we keep getting told by doctors that they don’t often see kids in his case looking as good as he does. This has to be a positive sign. And we have a good feeling about today. It’s going to be a good day, I have to believe this.
Today he has, as the anesthesiologist just called it, a “buffet”. Haha. After his MRI’s he will go up to CT and get CT scans of his sinuses, chest, abdomen, pelvis. This is a requirement for the bone marrow transplant team so that they can see if there’s any questionable areas of concern for infection. They want to know if there is before they absolutely wipe his immune system with the heavy chemo. After the CT’s he will then go to IR and have the spinal tap done and they will also place the feeding tube at this time. The benefit of this buffet is that he can remain sedated for everything, including the feeding tube! I asked if they could combine at least the feeding tube with the MRI so he wouldn’t have to be awake for the placement of it. It will be a long day for him, but I’m happy that it worked out this way because it will be better for him. He has been eating pretty decent the last few days, so instead of providing 100% of his food through the tube, the dietician decided we can instead start with providing 50% and we can always go up if he doesn’t continue to eat as well. This was exciting! And the tube is only temporary. We are hoping he will quickly get used to it in the same way he did his broviac lines. The child life specialist from the oncology floor came down here to our waiting room and talked to him about it too just so he didn’t suddenly wake up today with a tube sticking out of his nose and going down his throat. Hopefully this preparation will help him to be less scared by it. And he got to keep her Mr Potato Head doll so that he had a friend who also had a feeding tube ❤️
The team just took him back to begin. He needs his prayer warriors today! Please keep him in your prayers all day today that everything goes smoothly, he tolerates the sedation, there are no issues, and most importantly, that everything is GONE!!!! 🙏🏼 🙏🏼 🙏🏼
Our Warrior Journey 