Yesterday we packed up the car and left the house around 11:30 to head back to Children’s of Milwaukee for Cade to begin round 2 of chemotherapy. My drive up was peaceful. As I pulled out of the neighborhood, with my mom following behind me to help me out, I saw a bird quickly fly up and away above my car. I couldn’t get a good look at it, but from the corner of my eye what I saw, I swore it was a cardinal. It made me smile and wonder if it really was. I just thought to myself, the great grandmas. They’re watching over us and sending us off on this next journey. Cade quickly fell asleep as it was his nap time, and I put on my “have faith” playlist of all the great songs that have been shared with me since this all began. I find myself wanting to listen to only this on my drives to the hospital. It gives me a sense of calm and sometimes makes me cry. Well often times makes me cry, but good tears. I love an artist my brother turned me on to, Tauren Wells. Many of his songs really speak to me. His one song called “Hills and Valleys” is a song I have come to love. Over the last couple weeks I have found that I unconsciously have the chorus to this song playing over and over in my head. It would happen every time I would wake up to Cade throughout the night here at the hospital. Especially the awful withdrawal weekend, I found this chorus in my head constantly that weekend. Like God was speaking to me. The chorus is “you’re the God of the hills and valleys, hills and valleys, God of the hills and valleys, and I am not alone.” I used to be the one who would wake up with ridiculous ghetto hip hop song lyrics in my head at 3am. Ones that I had no idea where they were coming from or why on earth they were playing over and over in my mind keeping me from falling back to sleep. Or that stupid “what does the fox say” song. But not anymore. Not lately at least. ❤️
As I continued driving down route 12, I saw a monarch butterfly fly past my windshield (I know Chris is super proud of me right now as he’s reading this that I said windshield and not windowshield! Haha). I love butterflies. Especially monarch ones. Just something about the beauty and simplicity of their black and orange pattern. I didn’t think to much of it, I just smiled. But as I continued to drive, I sat at a stop light on route 12 in Richmond and over my music playing, I heard church bells chiming. I thought, it’s just because it’s noon, they must be ringing for the hour of the day. I turned my radio down and listened as I counted, but as I counted I looked at the clock at the bank on the corner and it said 12:02 and I found my count had gone well past 12. The bells were ringing just because. The light turned green and I continued to drive. As I turned to continue on route 12 towards Lake Geneva another butterfly flew right past my windshield. Coincidence? Probably. I continued to sing the lyrics to these beautiful songs and drove along. Let me just tell you, driving down 43, going like 80mph mind you, I saw 5 more butterflies on my drive to Children’s. A total of 7 butterflies! One time it was a pair of 2 flying swiftly together. I should have never even noticed these butterflies, who would see a butterfly driving this fast down a highway?! I coudln’t believe it. And I know this was not my imagination. There were 7. One was a smaller white one, the rest were monarch butterflies. I thought back to how we were in room 7 at Lutheran’s PICU. Then realized the next day (today) was my sweet boy’s birthday. On the 7th. Room 7, August 7th, and 7 butterflies. Lucky number 7!! My heart smiled.
We got to clinic for our appointment at 1pm. They had to draw his blood to check his blood counts and be sure he was safe to start this next round of chemo. Just to go back quick- on discharge last Wednesday we were thrilled that his WBC were up to 2.5 and his ANC was 1400. His platelets were still on the lower end, but they figured they’d continue to come up. Well his blood counts yesterday were AMAZING!! I couldn’t believe it. Dr Knipstein honestly couldn’t believe it as he was reading the results to me. His WBC were now 7.5, his hemoglobin (which determines the need for blood transfusions) was great at 9.5, his platelets were now actually on the high side at 505, and his ANC was 6500!!!! I couldn’t say a thing in reply other than Oh. My. God. As we sat in the room talking about how his days at home were, how he was eating, drinking, if vomiting was continuing, etc. Cade sat there eating sour patch kids, Doritos, and almost an entire Larra Bar while bouncing and jumping on and off the chairs laughing. He said to me that he never sees medulloblastoma kids at this stage behaving and looking like Cade was. He also confirmed with me that he never ended up getting a fever with the last cycle and when I said that was correct, he just shook his head in amazement. I knew the plan was to place a feeding tube for this round, but when I asked the Dr about it to confirm the plan, Dr Knipstein said that based on the way he just inhaled a protein bar right in front of him, he thinks we can actually hold off on the feeding tube at this time. Whooooo hooooo!!! This was more incredible news. He went on to say that when (I prefer IF) he gets the mucositis and mouth sores again, if he needs TPN and lipids again for several days it will be fine, especially if he goes back to eating as great as he did in the days that followed their healing. I was so happy with all of this news. We sat in clinic waiting for them to get us over to be admitted on the in patient unit. While we waited, the nurse walked in with the yellow masks and set them down and then had to pop out to get something she forgot. Cade took one look at the masks and asked why the masks were there. He started balling and said “they’re gonna change my dressing!? It’s gonna huuuuurt!” And the crocodile tears just rolled down his face. It broke my heart. He layed with me on the table as we always do and I held his hands with his monkey blankie and told him to cry and yell, it’s ok, and to squeeze my hands tight if it hurts, as I always tell him. He does amazing, this is always the case. But it still tugs at your heartstrings nonetheless. He was adorable because he knew he got to go to the “toy closet” afterwards for being such a brave boy. When we told him it was all done, that kid couldn’t jump down from the table off of me fast enough as he excitedly yelled “TOY CLOSET!” Hahaa. He even got to go twice because Miss Suzie let him go back again for being extra brave!
We finally got to the unit, a new room this time. It was funny and sad at the same time as we walked down the familiar main hall and Cade automatically veered down the first hall to the right- towards our old room. I had to stop him and tell him we were going the other way to a new room this time. In the clinic he asked when we were done if we were going to the car to go home now so I was a little nervous with how he would do being back to stay. But surprisingly he has done well since coming back to the inpatient unit and having to remain here. He had even asked me if we were here for a long time again and I sadly said, yes we are honey. We unpacked and settled in to our new room and I hung all the amazing poster boards filled with pictures that my family made for him to make his room feel more homey. A wonderful recommendation by a new friend I’ve met along this journey. Thank you Courtney! Today his room looks even more incredible and warm as today is his birthday and it is filled with banners and balloons and painted windows. Today my sweet little boy turned 3! And given the circumstances of being stuck here in the hospital, I have to say that I think this kiddo had a pretty fantastic birthday for himself. His nurses came in the room this morning with birthday banners to hang and a couple big presents for him to open. Then he got a delivery from my friends sweet aunt, Lisa. It was a bundle of balloons and a big chocolate lollipop that said happy birthday. Adorable! The day got even better when Daddy and Rylan walked down the hallway as we were on our way down the hallway on a walk. They were coming towards us with another big bundle of balloons in hand and Cade was so excited the second he saw them. He just started yelling “hi” and “hello” over and over again. It made me laugh, it was so cute. While we were hanging out in the family lounge, we were informed that the hospital was having a special event in the lobby from 2-3pm called the Taste of the WI State Fair and we could go down if the nurse said it was ok. The afternoon got even better for this guy as he had a very special birthday cake delivered and a couple special visitors that came with a basket of gifts.
My aunt got wind of an organization called Icing Smiles who make cakes for kids who are sick and hospitalized on their birthdays. Usually they require at least 4 weeks notice to find a baker and get the arrangements all made. My mom had submitted an urgent request, and while we weren’t sure it would work out, Icing Smiles made it happen! They found a baker who was able to make him a cake on such last minute notice and her daughter delivered it to us here on the unit. They dropped of THE CUTEST Minion cake ever! Cade absolutely loved it! I cannot thank them enough for making that happen! Then a couple of my sweet friends, Jamie and Laura, came to visit. Jamie, who is his birthday buddy, took it upon herself last week to put a post on facebook that I stumbled upon that brought me to tears. She had shared with everyone that she just learned her bday buddy was gonna be in the hospital on his birthday and for her birthday all she wanted was for people to help make HIS birthday as best as it possibly could be. So instead of doing something for herself today, she and Laura took the time to drive here to the hospital, bring me Starbucks, give me huge hugs, and deliver an adorable basket full of fun snacks, cards, and sweet little birthday gifts for Cade to open. It was so great. An incredibly huge thank you to each and every person who was part of making this happen and to Jamie for having such a big heart to even ask for such a request!! I love you girl.
After all the cake and present craze, we all ventured down to the lobby for some fun. There were cream puffs from the state fair along with other snacks. Games. Entertainment. Dogs dressed in costumes walking around. It was so cute. Cade, having not napped, was suddenly hit by his super busy and exciting day with pure exhaustion. He just wanted to go back to his room. We got back to his room to another bundle of balloons and a delicious edible fruit bouquet from his Grammie, Aunts, Uncle, and Boomp. He enjoyed this a lot! The nurses walked in to get his chemo doses started today at 5pm and I was able to quickly get him in his PJ’s and brush his teeth as he was half asleep. By 6pm he was out cold. Maybe the chemo drugs from last night are starting to hit him, maybe just the pure fun of today and all the activity wore him out, maybe it’s a mix of all. I just hope he sleeps comfortably all night, right through tonight’s doses. The last cycle, it was Wed that everything started to hit him and I feel like he threw up a handful of times and slept most of the day. Today he didn’t throw up once. It was so wonderful. Tomorrow I pray for the same thing. I pray that his body will just be comfortable and sleep it off as much as he can through the day and night. I pray that his counts being so high as we went in to this round will only help him, and that maybe, just maybe, he can somehow avoid getting the mucositis. We will wait and see. One day at a time. All that matters right now was that today was his 3rd birthday. He had an absolutely wonderful day. And I know in my heart that we will be celebrating his birthday for decades to come. Thank you to each and every one of you for making his hospital birthday extraordinary. Thank you to all of his prayer warriors for continuing to protect him and strengthen him with all of your prayers. God bless.
Our Warrior Journey 