Never Give Up

This was the name of a Puravida bracelet my sister gave me in the beginning of Cades diagnosis. She gave it to me one day when she was visiting us inpatient at CHW. She explained that she really wanted one for pediatric cancer or brain tumor, but they didn’t make them for either and she felt that the “never give up” bracelet was the next best option. So she and I both had one. I wore my bracelet every single day for the past 2 years with the exception of a couple times I had taken it off for black tie events. If you’re not familiar with Puravida, they’re string bracelets that have a pull tie closure to get them on and off, you pull the 2 strings in opposite directions to tighten and loosen. Last week I had noticed that my one pull tie had broke, but somehow the bracelet was still staying on and I was able to keep re-tightening it by just the one other side. It literally hung by a thread on my wrist, but stayed put all week. I couldn’t help but think of the irony of this as we woke up each day thankful for yet another day with our baby, and wondering whether or not it would one day just fall from my wrist or would it remain there until the very end. 

This bracelet fully symbolizes our journey. Cades entire battle. We NEVER GAVE UP. Not one day. No matter what awful circumstances were thrown our way, the relapse inside of a relapse. The most rare, unfathomable things. We never gave up. We just kept trying to throw everything we possibly knew at it. Incorporating all forms of alternative medicine and therapies to use in conjunction with his chemo and radiation. We always stayed as positive as we possibly could, as strong as we could. That was always my view point from the beginning. People would say to me they didn’t know how I could be so strong. I would simply reply that I had no choice. I can’t change what is happening, all I can do is be as strong as I possibly can so that he can feel that strength and fight. I never wanted him to feel scared or weak or feel like he couldn’t do something because of the cancer. And let me tell you, that boy became the strongest, bravest boy I have ever met in my life. 

We had to say goodbye to our sweet warrior Cade last night. Our amazing little boy made his journey up to heaven at 5:40pm. It happened so fast. The night before he had a very restless night sleep. Waking very often to drink because he was so thirsty, wanting to have a snack, wanting to get up, asking when he can be done sleeping, wanting to move down to my bed and sleep. I remember getting so irritated by 4am because I was so tired. If only I knew that would have been the last night I would have got to sleep with him and snuggle him. The last night to snuggle him super tight or hold his hand like he always wanted. The last night I’d truly here his sweet voice clearly speaking to me as much as I just wanted to sleep. It was storming, which didn’t help. He kept asking me if that was thunder and telling me he didn’t like thunder. I told him how when I was a little girl, my mom told me that all that thunder was just Jesus and the angels having fun bowling and that it was nothing to be frightened of. At one point he decided he wanted to snuggle with daddy. So I happily got out of bed to let Chris crawl in and snuggle as he rarely got these opportunities. I went downstairs to sleep in our bed where Rylan was sleeping. A short while later Chris came down to get me saying he wants me again now and said to me, “he’s acting strange, I don’t know he is asking me for hugs and kisses, he never does that.” He had asked Chris if he could give him a hug and a kiss, and then one more hug. I went upstairs and crawled in with him and we fell back asleep. 

Yesterday morning around 6 we got out of bed and moved downstairs to the couch like we always do. My dad came by and did his usual early morning visit before heading off to work and my sister came over too to spend the morning with us. Me being exhausted and not a morning person was just trying to quickly get his medications ready and my coffee made so that I could go sit on the couch and snuggle in to him like he was requesting. Of course he’s hollering at me from the living room telling me he wants me to go snuggle. “I know Cade! I’m coming!” And his sweet little voice replies to me “but you’re taking for eeeeever! You’re being a turtle mommy!” I made it to the couch as quick as possible and snuggled. Then he wanted to snuggle on top of me. “No, like ON your body.” So we got him on top of me and he snuggled there for a short bit before wanting to get back on his pillow. Shortly after he had to go to the bathroom. This is always painful for him and he always asks if he can lean on me. I tell him of course, and he leans on me and I sit on a stool in front of him and wrap my arms around him holding him tightly while he goes. I tell him I got him as he usually whispers back to me “ok I got you. You got me.” He was slouching on me and I asked him to pick his head up and he told me he couldn’t. He couldn’t hold his head up or lift it and he slouched it back down on me. Then suddenly I heard some sounds come from him and felt him go limp. I lifted him as I yelled his name at him and he had no response. I continued to yell Cade at him as I grabbed him from the toilet, Chris pulled up his pants, and we quickly got him back to the couch while saying no, no, no, Cade?! Cade! I laid him back on the couch in his spot and he suddenly came to and looked at us with his big, beautiful, brown eyes. I asked him if he could hear me and if he knew who I was. He said “yes, you’re mommy.” After that incident we were shaking. We noticed how cold his feet were and how blue and bruised they were getting. His arms and hands were very cold too now. We knew it was only a matter of time, but what did we know. All I did know was it was Wednesday. The week before, hospice didn’t even feel like he would make it to his infusion appointment that Thursday. Not only did he make it, but he made it an entire week afterwards when they thought maybe a day or few days at best. Leave it to our Cade. Always showing people wrong. Never falling within the norm. So yesterday morning after this happened, I knew it had been a week since his transfusions and he had nothing left in his body. He had no more hemaglobin and platelets to function. Chris and I both new at the start of the week that we, as Chris stated, “were on borrowed time.” 

He wanted to go up to his bed. That’s all he ever wanted to do, was to be in his bed as long as I could snuggle next to him in his bed. I often tried to persuade him to go in my bed to rest or nap so that I could have more room to be in and out. But not yesterday. Yesterday I honored exactly what he wanted to do and I carried him up to his bed where I laid with him the rest of the day snuggling him and holding his hands. He asked me to sing to him and then we put on a instrumental lullaby station and with my sister curled up at the end of the bed, we all just quietly enjoyed the music and fell asleep together. Around noon we gave him more pain medicine and haldol to keep him calm and comfortable. He was starting to struggle a little bit to breath. I knew we could give morphine as well for this, so we did. It wasn’t working. He was still struggling. We turned up the oxygen. Our hospice nurse was on her way and when she got there she immediately started working with the doctors increasing orders for both haldol and morphine to get his breathing in a comfortable spot. At one point, I asked him if it hurt to breath or if he was uncomfortable. When he said no, I reassured him that it was ok if it did, it’s ok to tell us things, we just need to know so we can know how to help. He then said that it was uncomfortable and I asked him if it’s scary and he said it was a little bit. The next couple of hours were a blur. Marjorie, our wonderful Hospice nurse, was working really hard to get him comfortable and we did get him to a good place. The chaplain had been there as well as Rachel with Child Life who has been wonderful working with Rylan. They were having a nerf gun battle and had made targets for him to shoot with the words that he thought of when he thinks of cancer. As time went on it was getting harder and harder for him to talk, but he kept trying. He had so much he wanted to say and it broke my heart that I couldn’t understand him. I was lying next to him, arms around him, crying, and just talking to him like I always do. Things he has heard me say to him over and over. I was telling him he was such an amazing little boy, and he mumbled back “and brave?” Because I always follow it with that. I said “absolutely brave! you are the bravest boy I have ever known in my entire life and you are so beautiful. I am so proud of you! You have such a beautiful soul and a heart of gold that has touched the hearts of so many people all over this world.” I went on to tell him how much I love him and will love him forever and ever and that I will always be his mommy no matter what and that he will always be my sugar bug, as days before when I called him peanut, he asked if he could still be my sugar bug. I told him that me, daddy, and Rylan will love him always. I cried that I wished I could make him better and said how sorry I was that he was hurting and sick and sorry that I couldn’t make him better. I told him that he soon would be walking and running and playing and he would be so happy and the pain would all go away. Marjorie, my sister, and I all worked together to get his hand and footprints and trace his hand for a family tree we are going to make. She had gotten all the medication ready for us for overnight and discussing with me what to do, what to look for, etc. We gave him more medication around 4:30pm and he seemed more comfortable. Rylan came in to say goodbye to him and give him kisses. I told him he could sit or lay with him for a few minutes if he wanted to and whispered to him that daddy told you that he may not be here when you come back home, he said “I know.” Then he said “love you bug bug, bye” and walked out of the room. My sister then brought him to a friends house we had made arrangements with for when this time came. Then a short while later Marjorie noticed that Cade was having apenic episodes where he would stop breathing. I put my hand on his chest and I couldn’t feel his heartbeat like I always could. She listened to him and said his heart was slowing down. It happened quickly. He was no longer breathing and his heart rate was slowly fading. She asked if I wanted her to turn off the oxygen machine and we did. We took the oxygen off and the feeding tube out so we could just see his beautiful face and she helped me get him on my lap to hold him. I finally got to hold him in way he had been longing for me to do. And I held him and sobbed with Chris next to me. I knew I needed to let Chris hold him too, but I didn’t know how to let him go, I couldn’t move. I couldn’t hand him over. I told him he would have to take him from me. But he let me hold him for a while. He knew I needed to. We just sat there and talked to him, telling him how much we would miss him here and how he would be seeing Boomp and Boosha and Misha up there, and his great grandma he never met, and Auntie Heidi. I also told him there’s a sweet little boy named Noah up there who is the same age as Ry is and that they could be buddies. 

Our family came over after a while to say goodbye to him. Chris and I washed Cade up and put new clothes on him. He had been wanting to wear pants so badly all this time, but it got to painful for him. So I put him in a comfy pair of sweatpants with pockets. Those of you who know him well, know how much he loved and would only wear “comfy pants” and that they had to have pockets. Oh how much he loved pockets. Then I picked out a red shirt, his favorite color, that said Hero Squad. I wanted to put a blue one that said Brave…but days earlier he had told me that shirt was stupid in his adorably sassy way. Then I tucked his monkey blankie (the stinky one of course, not a clean one!) in his arms and Chris and I sat there with him. As I looked at his face, I told Chris he almost looks like he is smiling. His face had this peaceful look to it and his mouth looked like it was half smiling, half grinning. He looked happy. We wrapped him up in one of his favorite super hero blankets he always snuggled in, and Chris carried him in his arms outside when it was time for him to go. We watched them strap him in and drive off as the dark night sky dropped rain down on us and the wild, cold wind blew across our face, our family by our side. Then we came back inside. I didn’t know what to do. I was so numb. I went up to his room, took a monkey blanket from his closet, grabbed his giraffe noise machine, and crawled in to my bed. I woke up this morning, almost for a second forgetting it was real. I couldn’t bring myself to get out of bed. I turned the giraffe on the birds and bullfrog sound, which was Cades favorite, and went back to sleep. I laid in bed until noon, and quite honestly the only reason I got out was because Ry came home. He had been asking to come home so Chris went and picked him up. He said when they pulled in the driveway he asked if Cade was gone already. He told him yes. He came in the house and in to my room and gave me a big hug. We talked a little bit and reminded him that it is ok for him to have tears of his own and that it would not make me or daddy think he is any less strong or that it was making things any harder for us. I told him that Cade would ALWAYS be a part of our family, he just won’t be here in this house with us any more. 

I didn’t want to leave my room. Didn’t want to go out to the living room to not see Cade in his spot on the couch. But I finally got out of bed, brushed my teeth, made some coffee, and came up to Cades room where my iPad and things were. And here I sit. In his bed, in his room, where I have slept snuggled next to him for the last month and a half. Looking around his room at all of his books and stuffed animals. His super hero capes and pictures hanging from the walls. His Cade backpack hanging on his closet knob. I sit here and I long to hear his sweet voice again asking me to snuggle him or to hold his hand. Or to battle him to wash his disgustingly smelly monkey blankie. He was my buddy. Everyone always says how much Ry is like Chris. Cade was a mini version of me. He was bossy, sassy, a total rule enforcer, a lover, crabby in the morning, loved coffee, loved music and dancing to it. And he was the sweetest spirited little boy with the most beautiful soul to the very last breath. Always worrying about everyone else and never complaining about a thing. The amount of swelling and lumps he had all over his sweet body, and his only complaint was his knee. He never got a normal childhood like he deserved, and I’ll never understand why. Why from age 2 to age 4 he had to deal with the life of cancer. Tubes, tests, meds, pokes, missing out on so many childhood activities. But through it all his spirit never faltered. He made the best of every moment he could when we were home. Even all the time we were in patient in the hospital. The videos and pictures we have are the best, despite being in the worst circumstances. 

I try to hold on to my faith the best I know how, but I’ll never understand why Cade didn’t get a miracle of healing. Of all the stories I have heard and read in the Bible of how Jesus healed people with just a touch, why he couldn’t do that for Cade, why he chose not to. Why he chose not to heal Cade and let him stay here on this earth with us to have the childhood he deserved to have. Chaplain Joel and I were talking a couple weeks back and he left me with a good perspective. He told me that in all the years he has done this work, he has only seen ONE true miracle…and it was a family who didn’t even believe in God. And while we may not get a big miracle for Cade, he himself can see all of the small miracles that God has blessed us with along the way. And he is absolutely right. The fundraisers, the car parade, the gifts sent to us in the hospital or to our home, the meals and care packages left on our porch. The TREMENDOUS amount of love and support that has been given to us the the last two years, the people that have been put in our paths. From my wonderful and compassionate company and our daycare Natures Scholars, to every single nurse and doctor who cared for Cade, to the staff from Journey Care at the very end, and every single person in between. ALL of it has been Gods plan. His gifts to us. His small miracles as Joel said. Every single thing has been to strengthen us. Although we still have an incredibly long journey of healing ahead of us, I know without a doubt in my mind, that we would not have survived these years without EVERY single person. EVERY single prayer. EVERY single person who has loved us beyond measure, whether it was as a stranger or as a close friend/family member…we thank you from the very bottom of our hearts. In the end, Cade was and will always be the true miracle. His sweet soul has touched the hearts of people all across this country. He had a way of making everyone fall in love with him, and while I have no idea how to walk this earth without him next to me, I will honor his warrior heart and soul every single day. I hope you are running those beautiful fields with Misha my sweet boy, happy and pain free. I will love you forever and ever sugar bug. ❤️