Wednesday morning Cade was back on the board with a white count of 0.2 and an ANC of 64. I had decided not to give Ativan at all over night and he did great. I feel like his cells started to come in and healed his gut from the mucositis first and then they began helping his body to increase its overall counts. He had just received platelets the day before, so in rounds the attending physician said that Cade would be here for at least another week to make sure he’s not needing several infusions a week to support his counts. I thought to myself, not a chance. But maybe she’s right. This is his 3rd heavy dose chemo round, maybe it will take him longer to recover than it did the last 2 rounds. But I still thought this was unlikely. Chris & I felt by Monday at the latest he would be ready to go home. Thursday morning his white count had increased to 0.5 and his ANC jumped up to 385. That same attending told the resident to prepare his stuff for discharge just in case he could go home in the next day or two. In rounds that morning she said he needed an ANC over 500 in order for his counts to be considered safe enough to leave the hospital. She admitted that she didn’t expect his ANC to jump from 64 to 385 in one day. Clearly she wasn’t familiar with Cade’s pattern. Haha. The past 2 rounds, his counts returned enough to go home at the week and a half mark from his cell transplant date. When he could go home would just depend on his counts. The unfortunate part of this was that ALL of his favorite nurses would not be there for the next few days, which meant none of them would get to be there to see him leave. They were all there Thursday though, so since we knew it was highly likely he would be leaving in the next couple of days, they all said their goodbye’s. Lots of hugs to Cade, lots of hugs and tears from me. At one point I kind of lost it after hugging one of his favorite nurses “Miss Brooke” that Cade looked at me and asked why I was crying as his lip began to curl as tears formed in his eyes. I tried to explain that they were happy tears. That sometimes you are just so incredibly happy, that you cry, but that everything is OK. They were just happy tears. He replied “ok mommy” to me in a cracked, sad voice. I was happy he got to see so much of his favorite nurses this whole week though and that many of them got to take care of him for days or nights in a row.
Friday morning the day began with it’s usual question from Cade that wakes me out of my sleep. “Can I be done sleeping mommy?” Lol. I always look at the time before I decide my answer. It was almost 7am, so I said- of course you can honey. If you know my children at all, 7 am is sleeping in! Then the first thing he likes to do is check his Santa mailbox. My mom brought him a little mailbox and told him that while he’s in the hospital, Santa comes every night and brings him a little gift. So every morning it’s the first thing he wants to do is check his mailbox to see what he got. And then he tells his night shift nurses when they come in to say goodbye. It’s pretty cute. What’s not cute is when I realize at 3:30 or 4 in the morning that I never put anything in it. Then I have to get up and quickly, quietly put something in there. As he opened his mailbox, the first thing I did was open up the My Chart app to see what his lab results were from that morning. I opened it up and saw that his WBC was 1.9 and that his ANC was 1500!! I looked over at him with a huge smile and said “guess what buddy?! We’re going home today!!” He squealed with excitement and said “Right now?!” “Did my counts come in yet?” ❤️
I couldn’t believe it. It was here. The day we have been longing for since June 13. The day that often felt so far away. The day when it would all be over. All I could think of was that we made it. We made it to the end of the tunnel. We can finally see and feel the LIGHT. Thank you GOD! It was bittersweet though. The MACC Fund Center has been amazing. Of all the places we could have ended up for his treatment, I am so grateful that fate led our path to them. The unit and the staff made the place that no one ever in their lives want to be, feel as much of a home as it possibly could have under the circumstances. His regular nurses and favorite people became our family over these last 6 months. Saying goodbye was hard. They truly fell in love with this little boy, who as many of them said to me, is the exact example of why they choose to do what they do. “Of course we don’t want you here, but we are going to be so sad to see you go.” It is families like us and children like Cade that make them love working on the HOT unit they would tell me. Hearing them say this truly fills your heart. Chris and Rylan came up for his last farewell. My mom had called on face time to say hi to the boys and Rylan said to her with excitement “Grandma, Cade gets to come home today and be home FOREVER!”
Cade anxiously waited all day until we could finally leave. He had to get platelets and get his dressing changed and get some final medications before they could disconnect him. But as soon as she disconnected him he screamed with joy and smiled ear to ear. He knew what that meant. It meant he was finally out of isolation and going home. He ran out of his room with excitement saying goodbye to everyone. Even the attending who he wouldn’t give the time of day to for the last week. He saw her way at the end of the hall. I said yes she’s leaving. I saw her turn around as she heard him so I told him look, wave goodbye, she heard you. He turned and saw her standing there and instead of waving, he took off running. He ran all the way down the hall and gave her a big hug. Then he turned and ran to another nurse who has taken care of him and said “bye Miss Linda!” as he hugged her. And then ran and gave one of the care partners Tracy a big goodbye hug. It was precious. And I’m pretty sure it made Dr Browning’s day! As soon as we got off the elevator he screamed “the gift shop is open!!!” This was one of his favorite places to visit when we used to get to walk around the hospital. He just adores the man Mickey in there. They are buddies. Cade saw him and ran in and gave him a huge hug. We finally pulled away from the hospital around 3pm. The boys drove with Chris, and I drove home by myself. This was probably best as I cried on and off the whole way home. Cried tears of relief. Of shock. Of pure gratitude to God for carrying us in his arms through this storm. And some tears of fear as I pleaded for him to please never let us have to experience this again. Cade will have follow up MRI’s to be sure the heavy dose chemo continued to work at keeping the tumor cells away, but this is not until January 9th. I want to breathe a sigh of relief, but I feel like this is keeping me from fully exhailing. I wish they were sooner, just so I could feel like we could fully celebrate. But I need to just believe in my heart that they are going to be good. That Cade is doing great and will continue to do great. I can’t let fear run the rest of my life. It will probably always live there now, sadly, in the background, but I need to keep my faith in front.
Today the sounds of laughter fill my heart and my home. Of course not without yelling and rectifying arguments and fights over who took what toy from who. Some things never do change. But the laughter. Listening to the boys as they laugh and play together upstairs. Being thankful for this beautiful winter day full of sunshine as I sit outside watching them laugh and play as they ride the gator and Jeep around, playing in their swing set, Cade going down the slide. Imaginations running wild as they use their nerf guns and squirt guns on pursuits to put out fires and catch bad guys. Thankful to be home. As my dear friend said to me- it’s amazing that you guys were able to be home for every holiday, he got to be home to trick or treat for Halloween, home for Thanksgiving, and now he gets to be home for Christmas. She is absolutely right. There is no greater blessing right now than getting to be home for Christmas, together as a family. I have met many families on this journey who will not be as lucky this Christmas or whose homes will never feel full again and I pray for peace for each and every one of them. Thank you everyone for your continued expressions of love and kindness in all the forms that you send them. They are truly appreciated. Please continue to keep Cade in your thoughts and prayers, especially on January 9th for his MRI’s. I wish the happiest of holidays to each and every one of you. May you enjoy every minute with your loved ones. Merry Christmas! 🎄 ❤️ 🙏🏼
Our Warrior Journey 