My last post ended about butterflies and whether or not they were just coincidental or if they were signs and messages to me from God. Well I woke up that very next morning and got my answer. We had a 5K that we were participating in that Sunday for a wonderful organization that has become dear to our hearts- Heroes Like Haley. The boys were sitting at the table in our kitchen eating their breakfast when Rylan says to me “mom, there’s a butterfly outside flying around! Do you see it? Come look mom!” I walk over to the window and look out to see a huge monarch butterfly flying around my big flower pot out there. Which I have to toot my horn a quick second- Chris constantly calls me a plant killer. It’s been an ongoing thing since we’ve met. Sure he may have some stories in the past that warranted that, but I have to say my flowers are looking quite fantastic right now, I’m quite proud. I may get a green thumb one of these days after all. Getting back to the story- the butterfly then lands right in my flower pot and nestles up in between the flowers. At this point Cade comes over wanting to see too. I try and point out it’s coloring as it’s wings are closed up as it’s in the flowers. Then it flies up out of the flowers and begins to fly all around that area for a minute and proceeds to land right there on the grass and sit with its wings closed up again. Just peacefully sitting there. I am just in shock at this. I usually see butterfly’s but they fly right past me, never have I seen them just hover and linger around like this. The butterfly then flies up off the grass and around and lands back in the flowers. Cade watching it sees it and says he wants to go outside and see it closer. I wish I would have had my camera. He walked outside towards the flower pot and the butterfly flew up and fluttered around him a few seconds then landed in the grass again. It was such a beautiful moment. And then Henry charged out and scared it away. Leave it to Henry, our giant dog. Witnessing this though just filled my heart and made me smile so big. It’s not just the season. This was definitely God reassuring me that the butterflies are him.
We went on to have a wonderful day at the 5K and the family luncheon afterwards. The amount of love and support shown at this event for us and several other families fighting this fight was so awesome. Thank you so much to everyone who participated in the 5K or donated to the cause. It means so much to so many!! We look forward to participating in it again next year.
A few days later, last Wednesday, Cade went in to Lutheran General Children’s Hospital to have the Ommeya resevoir placed. It was very weird being back. It ruffled up a lot of memories from the day and weeks after diagnosis last June, which is the last time we’ve been back in those same halls. In the surgical waiting rooms. In the PICU. The surgery was scheduled first thing in the morning, we had to be there by 5:15am, which means we had to drag ourselves and Cade out of bed at 4am and hit the road. It was a long day, that’s for sure. We had seen Dr Ruge in the office the Friday before and he went over the surgery, possible complications, what to expect, etc. His team is always fantastic at updating us along the way which we have always greatly appreciated. Dr Ruge came down after he was finished with the surgery to tell us that everything went beautifully. He had no problems, there was no bleeding or complications. Cade did great. They made a u-shaped incision to insert the resevoir and then guided the catheter into the center of the brain by the ventricles. Dr Ruge went on to say that some times kids will get chemo injected into their spine with LP procedures, but that often that medication only circulates down in the lower part of the spine, but with these Ommeya reservoirs he said it allows the chemo to be injected right in to the central area of spinal fluid production allowing the medication to circulate nicely all throughout the brain and spinal column. This is our hope. That the medication is as effective as possible at getting at these tumor cells. Every last one of them!
We were escorted a short while later to the PICU where Cade was recovering. The man leading us asked if we wanted to take the escalator or the stairs. It’s on the 2nd floor. I was of course fine with either, leaving up to what was best for him. He opted for the stairs. To the right of the stairs is a wall of windows. This is part of the entrance lobby area of the Children’s Hospital. As we were walking up the stairs I was noticing something in my peripheral vision. Enough to catch my eye and turn my head. I turned and looked out the windows as we were walking up, and there fluttering all around the window was a big, beautiful, monarch butterfly. I smiled. God was letting me know that he was watching over Cade. That he was there with us. I never saw another one by those windows the rest of the time we were there. Just in that moment. We got up to the PICU and stayed there over night to monitor his comfort level and his neurological status. Dr Ruge had ordered a CT scan for the following morning to make sure there was no bleeding or issues over night. He came in to tell us bright and early that morning that the CT looked great. Showed us some of the images. And told us that as long as we were comfortable and Cade was comfortable, we could go home later that afternoon. We were pulling in the driveway by lunch time on Thursday with our little super hero. He took a dose of Tylenol before we left, and that was the last time he needed anything. He did so great with surgery and recovery. It’s been a challenge to keep him “relaxing on the couch” watching a movie or doing his iPad for the couple days after discharge. He’s been on the move since. Playing outside, climbing at the park, running around, you name it.
He is a week post op today and was excited that he finally got to get the incision a little wet and take a shower. The little things, right?! We will see Dr Ruge for post-op follow up next week to see how healing is going as well as an audiology appointment to see how his hearing is looking at this time. Right now though, tomorrow is the next big day for us. Tomorrow he will be having his repeat MRI’s of the brain and spine as well as another spinal tap to look if any cancer cells are still present in the fluid. This will be his first MRI’s since radiation ended to have a look at how well radiation has worked and see how the tumors are looking now. In a perfect world, we of course would love to see that every single tumor is gone tomorrow. Truthfully, I don’t think that Chris or I are getting our hopes set on that. At least I am not because I feel that I was so badly blind sided by the MRI in April. I am nervous. We are definitely praying for some positive news to come our way tomorrow afternoon and at least learn that almost all of them have shrunk or are gone. The more the radiation worked, the better! Please storm the heavens above us with prayers for our sweet and incredibly brave Cade. Prayers for continued healing from above. We cannot thank you enough for your continued thoughts, love, and prayers.
Please Lord, hear our prayers. 🙏🏼 ❤️
Our Warrior Journey 