We have been home for two months now. Hard to believe that time has gone by so quickly. My last update ended with Cade getting his central line out. He did great with it! It was so quick, Chris and I barley had time to grab food and finish eating before he was already done. The surgeon was fantastic and sat with us to update us on how well the removal went. He didn’t even need to put a single stitch in. It came out without any difficulty and they put a small pressure dressing over it that had to stay on for a couple days. Once that could be removed then he was ok to submerge himself in water. When I went back to recovery to see him it was the sweetest kodak moment ever (and I of course had left my phone behind with Chris). I was expecting to see him still very sedated and even asleep as I usually had. Instead he was sitting up, propped a little with some pillows, and drinking some apple juice from a straw. He just looked adorable I had wished so much that I could take a picture and capture that image to save forever. The nurse said he was doing so good that they were already ready to transfer him over to the post-op unit to watch him for a little while. Over there he was eating popsicles and popsicle slushees. Drinking juice and water. By the time they were letting us leave he was eating some of my left over cookie I had from lunch. He was good to go!
He knew the rules. The dressing stayed on for two days and then could come off. He also knew what that meant- in 2 days he could jump in the bath! It was hilarious. Cade woke up on that morning and literally the first thing he said was “can the dressing come off!? And I can take a bath!?” I said yes, and he was giddy with excitement. He even wanted to take the little dressing off all by himself. He instantly wanted to take a bath in our whirlpool bath so that he could fill the bath tub up super full and turn the jets on. And add bubbles. So that is exactly what we did. He was on cloud 9! It was the cutest thing. The first thing he did was sprawl out on his tummy. All you could see was his little head above the water. He was flipping all around. Getting up on the little seat and sliding off in to the water. He was having a blast. It was so precious. From this day on he has wanted to take a bath literally every single day. Often times trying to take two baths in one day. He would wake up and ask me “is I stinky mom?” If I’d answer him no, he would get so disappointed and whine in disagreement saying yes he was stinky and needed to take a bath! I laughed and told him just because he isn’t stinky, doesn’t mean he can’t still take a bath. He laughed with happiness. I think this week is finally the first week that he hasn’t taken a bath every single day. Haha.
We have had some big things happen over the last couple weeks. We had a fundraiser at our local Culver’s in Mchenry, which was amazing. It was something they decided to do for us and the amount of people that came out from the community to eat there and support us was amazing. I cannot thank everyone enough. We had a wonderful photographer come out to the house to take some pictures of Cade and learn about his story for a wonderful organization called Destination Dino-Liam. They are putting on an event on March 23 called Hope for Heroes Gala at the Gallery of Wisconsin Art in West Bend, WI to raise money for childhood cancer awareness. They will be featuring 16 families, displaying pictures of each child along side their story at the event and we get to be one of the families. Tickets are only $20 which includes appetizers, drinks, and live music. Tickets can be purchased at the door or on their website if you’re interested- https://www.destinationdinoliam.com/hope-for-heroes-gala/ It is an adult only event, cocktail attire. Should be a nice little date night. We would love to see you there. Next on the list, Cades big brother Rylan lost his first tooth! He just turned 5 this past November and he lost his first tooth just last week. We were eating lunch at Costco. I told him that it was going to happen when he least expected it, and that it did. And he swallowed it no less. Happened so fast while he was eating that I think the tooth was long gone probably in a chunk of hotdog or bun before he had even realized he had lost it. When he told us and we asked where it was, my husband and I both simultaneously said “you must have swallowed it!” Rylan was instantly in tears explaining “now the tooth fairy isn’t gonna come!!!!” But the tears quickly stopped once we explained she would absolutely still come. She knows these things happen and will still know that you lost the tooth. Then last, but certainly not least, Cade had a follow up appointment with his oncologist. This was a very special appointment for us all. It was at this appointment that Cade got to ring the bell.
Ringing the bell is the celebration at the end of treatment, celebrating your victory of cancer. The sign under the bell reads: “When your last chemo has come and gone. Ring the bell to tell everyone! It’s a time to celebrate, hip hip hurray! What a great feeling, what a great day!”
He had his appointment first. We anticipated lab work, but the team had changed their mind feeling that it wasn’t necessary at this time. They knew his immune system wouldn’t show to be fully recovered yet and decided to just get labs with his next appointment in April when he will have his next MRI. This was great because now that he has no lines, he will have to get poked with a needle for labs, so this saved him some pain and tears this visit. The oncologist was overjoyed at how wonderful he looked. He said that he was his best looking medulloblastoma kid right now and it was so great to see him looking this good. Cade had also finally seen his neurosurgeon Dr Ruge at the end of January, who at that appointment had pulled his original MRI with the brain tumor up on a split screen with his most recent MRI from January 9 and said to me that his brain looked beautiful! He said you could barley tell that he had surgery it looked so good and that he was so happy with this and how great Cade was looking and doing. Between that and his oncologist now saying multiple times how great it was to see Cade doing as well as he was, it almost had me in tears. My heart was so full of happiness. It is moments like this that give me hope that Cade beat the devil that is cancer and help me to believe and know with all my heart that he will never have to look back. This actually reminds me of a beautiful and moving sign that Chris had made for us. It was made by my sisters friend Erin. The sign reads: The devil whispered in my ear. “You’re not strong enough to withstand the storm”
TODAY, I whispered in the devils ear, “I AM THE STORM”
Getting back to the appointment- it went great. His weight was great, he had even gained a pound since his appointment the month prior. This was exciting. It meant he was doing great without the feeding tube. The dietician didn’t even need to see us, she said keep doing what we’re doing. Since we didn’t have labs done and didn’t know where his white counts were sitting, I had asked the oncologist if we needed to continue to be super cautious of germs explaining that I say no to birthday parties and such because they’re usually at places like jump houses and gymnastics centers. To our surprise he said no. That keeping him away from kids longer will be more detrimental to him, he needs to be around other kids. He still doesn’t want him back in daycare until his immune system is recovered and flu season is over, but that it is ok to start going to more public places and being around other kids while using our best judgement. This was super exciting! Once the appointment was finished we went out in to the waiting room of clinic for the bell ringing. The room was full of our family and friends. It was a waiting room filled with love. Our family, a friend and her daughter whom we had met on this journey, several of his closest nurses were there, as well as his oncology team and a handful of other doctors and NP’s from the inpatient unit. This was actually the same day that we got all the crazy snow a couple weeks ago, but we didn’t want to cancel it because we knew everyone had already made arrangements to be there. It worked out to our benefit though because schools got canceled due to the snow, which allowed my Aunt and 3 of my 4 cousins that live nearby to be there for it too. My cousin Cameron and her fiancé actually drove up from college to be there for us and video it. I was proud of myself that I managed to read the entire passage without sobbing. However, when it was time to ring the bell, Cade was actually resistant to ring it and said he didn’t want to. I don’t know if he was scared for the noise, overwhelmed by all the people there, anxious about it all, or a mix of everything. So Rylan, being the sweet boy that he is, offered to ring it with him. This did the trick and they rang the bell together. Which was even better in my eyes because this was just as hard for Rylan, being 4 and having to see his brother go through all this. Having to suddenly, without choice, accept and adapt to all of the changes with his brother and family. Seeing them ring the bell together was perfect.
I had seen a beautiful video on Children’s of WI website a few weeks prior to our appointment about a family who had hired a photographer to document their sons bell ringing ceremony as a special keepsake to have for him forever. I loved this idea! It turned out I learned a week later that I actually knew the mother of this family. She and I had gone to high school together and she reached out to me in an email after recognizing my name on the MACC parent support group. Such a crazy small world that we live in. I had sent this video to my cousin after seeing it asking if there was any chance that she could do something similar. I was thrilled when she said that they would be able to come up and do it for us and that she was able to make it even with all of the snow. She blows me away with her talent. It is the most beautiful video and I am so excited to be able to share it with all of you! I am so grateful to her for doing this for us and giving us this incredible memory to keep forever. Thank you again Cameron, we love you!! ❤️ ❤️
Here is the link to watch Cade ring the bell 🔔💛
https://www.dropbox.com/s/rkkac10w5wz4zhy/Cade%27s%20Bell%20Ringing.mp4?dl=0
Our Warrior Journey 