How do you prepare for the end? Prepare to say goodbye? That is something that we are trying to figure out right now. It’s hard enough to imagine for a loved one. A parent. An Aunt or Uncle. Grandparent. Friend. But how do you prepare yourself for that final goodbye when it is your sweet, precious child?! It’s unfathomable. It’s something you can never, ever be prepared for no matter what you tell yourself.
After last weeks transfusion Cade had some good days. We got to enjoy the weather and get out for several walks and he even shocked us with randomly wanting to eat hummus and pretzels with me one afternoon to asking me to make Mac and cheese the next and him and Ry sat in my bed enjoying Mac and cheese together. Early Sunday morning though, he began breathing irregularly and when I put the saturation monitor on him he was in the 70’s. I ended up having him up to 4-5L of oxygen to keep his saturation’s in the 90s. I knew that he didn’t have enough hemaglobin in his body to carry his oxygen. He had small bruising that had started on his inner thigh days prior, but that morning the bruising was spreading all over his legs and many of them were larger. Almost like chicken pox, but bruises. I knew he would not make it to his transfusion appointment the next morning, so as much as I didn’t want to, my gut told me to bring him to the ED that morning. His nose had started to slightly bleed too because he can’t keep his fingers out of it, typical toddler. He must have scratched when digging up there and that’s all it takes. They were expecting us at the ED and our team had already put orders in for what they wanted. They did labs as well as a chest Xray because of the increased oxygen requirement. He got blood and platelet transfusions. His hemaglobin was 3.5 and his platelets were 2. Dr Tanaka, our oncologist, had called in to our room a few times over the course of us being there to speak with me and update me. In his initial call he explained to me that the chest X-ray showed fluid in his lungs, which is why he needed more oxygen also. This was because all of the swollen lymph nodes and masses in his shoulders are blocking the normal flow of fluid and blood to his lungs/heart. He went on to say that sometimes they will drain these nodules, but it is painful and done under general anesthesia and he does not want Cade to undergo such a procedure. His hope was that he would get the transfusions and a dose of lasix afterwards and that should help to pull a lot of that fluid out of the lungs and back in to his circulation. I had also asked if we could entertain the idea of transfusing him every 5 days vs. weekly seeing as he seems to bottom out come the weekend. Also understanding that when the need for any more frequent than that comes, then at that point it would be counterproductive. He agreed to try that and said we would plan to have Cade come back Wednesday or Thursday of this week. Once the transfusions were completed Cades nose still hadn’t fully stopped bleeding. The ED doctors talked again with Dr Tanaka and ENT and decided to try a medication in his nose to help the nare to clot. He wanted to be sure that I was comfortable leaving and taking him home and that the bleeding was under control before doing so. Typical ED fashion…something as simple as this had us there for almost 3 more hours. I was so over it by the time we finally left at 8pm. And poor Cade. He was even more so than I. But we had his oxygen back down to his baseline by the time we left, which was a relief.
Monday, Marjorie, our hospice nurse, came by to see Cade that evening. We were not at all prepared to hear what she had to say. Her and our oncology team have done a phenomenal job of reporting back and forth and keeping everyone up to date and on the same page, which has been wonderful. We had actually done a conference call that morning so they could check on how he was doing, how his pain control was going, how he looked after the transfusions, etc. When I described the bruising I was noticing, Marjorie had really wanted to come by to take a peak at him and see how he was doing. He wouldn’t let her listen to him or do anything with him, but she said she was able to see the bruising I was talking about. She went on to say that this bruising is different from the tiny freckled petechia bruising that we had been seeing. That is when the tiny ends of the capillaries of the veins are breaking and can’t clot from low platelets. This bruising is the larger beds of the veins. The larger branches are now breaking and his body cannot repair itself faster than the disease is breaking it down. This type of bruising they see at “the end”. She said she wasn’t sure if he would even make it to his transfusion appointment Thursday and actually got a little teary when saying goodbye as she was off the next day and said to me that she was afraid she wouldn’t see him again after she left our house that night. I was not at all expecting this conversation, but as she apologized she explained that she’d rather it hurt a little bit and we be prepared, than to be completely blindsided. I told her I appreciated her transparency, I just didn’t see it coming at all. I didn’t know that’s what the bruising meant. I just thought it was a more apparent sign of his low platelets.
We decided from that point to take it hour by hour and see how Cade did. Tuesday we spent time with family here visiting with him. Trying to process all of this. Process the fact that we have a matter of days left with our beautiful boy. Wednesday we didn’t allow anyone here. We just kept it the four of us. Cade had a restless night sleep and Tuesday he was very tired. He was a little confused that afternoon, which while I’m sure could have been a mix of all the medications and what not, I knew it was also an additional sign that things were in fact going down this direction. He would wake up and ask me if we could go home now or what food I got from the cafeteria. Sometimes he’d say he wanted mommy and I would explain that I was mommy. Wednesday (yesterday) we had a wonderful photographer friend come to the house and take some pictures of us with Cade. Just capturing moments snuggling and loving him while he was sleeping. I figured I didn’t have to ever look at the pictures if I didn’t want to, but it wasn’t something that I could go back and do and I didn’t want to WISH I had done something like that. So I am very grateful for her coming and doing that for us. I can’t imagine how awkward and sad it is to come in to someone’s home in this type of situation and do that. He slept most of the day from 10-4ish. He was awake for a little bit and wanted to go lay in Ry’s bed and read books, which we of course did. Then he was in bed for the night again by 7. Chris and I were very torn with what we wanted to do. Whether we wanted to take him to the transfusion appointment today or not, knowing very well that if we did not go, then we had to the end of the week at best. He was showing us that his body was struggling already and it had only been 3 days since he was transfused in the ED. His gums were bleeding and I was still battling him to keep his fingers out of his nose so that he didn’t disrupt the clot that had finally formed. I can’t imagine how annoying that had to have felt in his nose though, poor guy.
He woke up today and was stable so we decided we would take him. Knowing that today would be the last time we would take him. He hates going and is always asking to go home before we are even started with the transfusions. And we know the drive there and back is hard on him. But we figured lets go one more time if it means he could have a few better days for the days he has left. His counts confirmed what we all thought. It had only been 4 days since his last transfusions and today his platelets were already 3 and his hemaglobin 5. The team came in to talk to us. Dr Tanaka explained that we are giving platelets in hopes that this would prevent any massive bleed out when the time comes. He was ok either way with giving him blood, but explained that he feels today needs to be the last time we do that. I replied to him that Chris and I had already decided this was our last trip today. So we decided to give blood as well in hopes that it would keep him more comfortable by giving his body more cells to carry oxygen through his body and not cause a lot of pain and added discomfort with breathing. This would hopefully help him. He went on to say that they would give lasix again afterwards so that they don’t fluid overload him and flood his lungs making him miserable. Due to the lymph blockage in his shoulders/chest, it is preventing blood from circulating as it should and his heart is having to work extra hard to pump blood. He said that based on how Cade looks today, he only has a matter of days left. It could be tomorrow, it could be a few days from now, but it will be soon. We want to be home and not in the hospital, so they made sure I had any medication I could possibly need in the home to keep him comfortable. Their hope is that he continues to sleep more and more and at some point, that he passes comfortably in his sleep.
He slept comfortably almost the entire time we were there today and I slept by his side as I always do. Our team is so wonderful, that today they brought an inpatient hospital bed over and slid Cade over on to it so that I could snuggle and sleep with him much more comfortably. We have truly been blessed with the most wonderful people caring for us all this time. I just laid next to him crying off and on. Thinking how unfair this is. Not knowing how a miracle could even fix this. How it could fix his poor body and what this disease has done to it. His face is all bruised, his gums have swollen completely in to his right side of his teeth/jaw. You can hardly understand what the sweet boy has to say. The bruises all over. The swelling. The masses and lumps everywhere I look. Crying, thinking why aren’t we deserving of a miracle? Why is this happening? Why did Cade get to have clear scans and ring the bell only to have every rare thing possible happen to him. Why do other kids get to have good scans and be in remission, but not mine? Why does he have to go, why can’t I keep him here with me? Why didn’t he get to have a childhood here on this earth with his brother? With us? Please God, heal him. Let him stay here with us. Why this sweet boy with a heart of gold, why does he have to endure all of this, why him? I just don’t understand. None of it makes sense to me. As much as I believe, I have faith, I trust in God…I can’t make sense of any of it.
Through all of this pain and discomfort he is still the most beautiful soul I have ever known. This has been his life, all he has known for 2 years, and until the pain at the end, he has never complained,
not once. He is the strongest, bravest, most incredible boy I have ever known. Through the drowsiness, the pain, he still says things like “Can you call me sugar bug?” Or “Am I your bug bug?” Yesterday I was crying next to him asleep and he mumbled “is that mommy crying? Why are you crying mommy?” I replied that I was sad. He sweetly, softly says to me “would a kiss make it better?” The other day Chris was working and in his uniform and he woke up and saw him and said “When you’re done with work are you gonna change out of your work clothes and snuggle with your guy?” He will ask for Ry to come and read him or snuggle with him or do beads with him. Playing with all of his beads of courage is one of his favorite things to do. I sleep with him most nights now as he rarely lets Chris or my mom be in there instead. I hate that his swelling is one leg and opposite arm because all he wants to do is snuggle on me and he’ll get so frustrated saying “no ON you, ON you mom, I just want to snuggle ON you” and I’ll explain that it probably won’t feel good for him. But I wish so much that he could do that. That I could have him snuggle on top of me like he constantly did all our days of inpatient. So we compromise with me snuggling really close and I have to be on his pillow, then he’s happy. And my favorite thing he does in the middle of the night, in the middle of sleeping, I’ll wake to him saying “can you hold my hand?” And of course we interlock hands and both fall back asleep.
Rylan is our biggest concern. Chris and I know that this is going to be the hardest thing we will ever have to do. I don’t know how I’m going to survive this, but I really worry how Rylan will cope with losing his brother. His buddy. We continue to talk to him about all of it, reminding him that it is ok to be sad, angry, both. It’s ok to cry. We talked to him last night about the end being closer, and while we still don’t know when, Cade is going to end up going to heaven soon. We ask him if he wants to be here to the very end, or if he wants to say goodbye and then leave and go somewhere else. He says the later. Which is fine. But I let him know that when the time comes, if his heart is telling him something different and he doesn’t want to leave, then that’s ok to. It’s ok to change his mind at any point about anything, he just needs to promise to tell us and talk to us so we know.
Today I got the chance to say goodbye to our team. To thank them for everything they have done for us. To personally thank Dr Tanaka for loving Cade so much and taking such good care of him while not even knowing him for very long. I went on to tell him that he is a wonderful doctor with such a beautiful compassion about him and I am so grateful to him. We disregarded COVID and he hugged me tightly. Not everyone I would have liked to say thank you and goodbye to was there, but most were, and that was a nice bit of closure. By the time we got home late this afternoon, our team had already updated Marjorie and she was calling to check on us and see how Cade was doing. She guided me with what to do in the event something happens overnight tonight, said she was praying for us, and that she would call me in the morning. She is just more proof that God has put exactly the right people in my path for me, for us, through all of this.
Thank you for all of the love that continues to pour in all around us supporting us all the way through. We are so grateful for all of the thoughtfulness and generosity that is being given to us. Please continue to keep us in your prayers as we navigate through these next few days, hoping and praying for a miracle still. A gift of mercy and healing from God. But also praying for the most peaceful situation that could possibly be, if it does have to truly end this way. Sending so much love back to you all. ❤️ 🙏🏼
Our Warrior Journey 