As if life isn’t hard enough, things continue to get crazier and crazier in our world with COVID. I find more people than not are complaining about having their kids at home with this whole new e-learning school approach that was forced on to everyone and the social distancing and remaining in their homes isolated from people. Truthfully, this is nothing new for us. What many, many people don’t realize is that this is normal life for cancer families. For families with immune compromised children and loved ones. I can’t tell you how many birthday parties we have missed and gatherings we have had to say no to for the safety of Cade when his blood counts were to low to risk leaving the house and going in public. Or the number of times in the beginning of all of this that we were inpatient at the hospital for 2-3 weeks straight. Two to three weeks that Cade never saw beyond the entryway of his hospital room because it wasn’t safe for him to leave. The slightest cold virus could have been detrimental to him. So social distancing really is not new to us. What is difficult for us through COVID is not that we can’t go to parties and the mall or out to eat. It’s that at a time when we are breaking inside. A time where we literally don’t know much time we have left. Is also a time that we cannot be surrounded by those that love us and want to comfort us, visit with us, love on us. That has been very emotionally challenging and heartbreaking. So I offer you a new perspective through these crazy times- Even though kids are home, working your last nerve, making it challenging to work from home if you are having to do that….think for a moment, of the families like us. The families who are longing for one more day. One more week. Please stop and remember this every time you are ready to lose your mind, and be grateful that you have your healthy kids at home to drive you crazy.
Since finding out last month that the cancer had spread to Cades bones, a lot has happened. We have gone once a week to the hospital for transfusions. To have his blood counts checked and get blood or platelets, or both in his case. Our goal was to get to a good plan in place where he comes on a planned once weekly basis for these “tune-ups” as we call them. Our first week coming in for transfusions I could tell he was symptomatic and definitely needed blood. I was not at all prepared for them to tell me his hemaglobin came back at 4. I’m not sure I have ever seen a level this low. Dr Dobrozi was on that day and when they told me the levels my eyes filled up with tears as I asked if they are this low because his body has no room to produce against the space the cancer is taking up in his bone marrow. I was still having a hard time swallowing all this as it had only been one week since we were told the news. She said yes as she hugged me tightly saying this doesn’t mean anything. This doesn’t mean he has 1 week or 2 weeks, we still don’t know. We were there for over 10 hours between the amount of blood he needed and platelets, we even had to go to the inpatient unit for the last hour because we were there so late. At the end of his blood he was giggling away and being super silly just cracking up. I wish I would have caught this on video because it was priceless. It was our old Cade again, just laughing away with that infectious laugh that everyone loves.
We ended up starting with a hospice company by the advice of our team who felt it was better to start early and become familiar with their faces and not need them often vs. starting with them when we really needed them and having strangers in our home at the hardest most agonizing time. At the end. I felt this was a very good perspective, so we agreed and they admitted us to their service and have been wonderful. This was good because the next week when we went back for transfusions, things took an entirely different turn. We were having a really hard time controlling his pain. When we got to the day hospital he just looked miserable and he had been consistently complaining for a few days about his left wrist hurting. We thought he maybe slept on it wrong and sprained it, but as the pain continued we began giving morphine more and more. The doctors gave an additional dose of morphine immediately and ordered an X-ray to make sure he didn’t have a fracture in his wrist. The X-ray came back normal, which meant one thing. This was disease progression. Disease was in his wrist causing this awful, constant pain for him. They ended up changing him from morphine to oxycodone for better break through pain control and we increased his methadone dose as well. His hemaglobin was in the 7s yet he looked worse than he did the week prior when it was 4. This was also concerning to our team and they mentioned the importance of deciding what measures we want done or not done for Cade when the time comes. I was so caught off guard by this and our oncologist was not on site that day, due to COVID many are working remotely and people are only coming to the hospital on certain days. A doctor I had never talked to came in to try and talk to me. He was very genuine and kind, but I wasn’t ready to talk or hear what he had to say. I called Chris to update him as I was there alone. Then Katie and Ally, who were the NP’s on with us that day, came to tell me that Dr Dobrozi was there she was just on the “dirty side” working with respiratory kids, but that she was willing to change in to clean clothes and come over to day hospital to sit down and discuss with me the DNR in full detail to explain what each thing meant if we chose to or not to do it.
I truly think God new that Dr Dobrozi was exactly who I needed to be the person to have this conversation with me. She has also experienced the loss of a child in a different way. With Chris on speaker phone, she took the time to go through every single thing in detail. She began with saying that none of this is OK and that she is so sorry we are having to have this conversation. Then with tears falling down her own face, she began explaining that chest compressions, breathing tubes, electric shock all would be very painful for Cade and cause a great deal of suffering to him if we chose to do them and that none of them would change what is happening in his body. If we brought him back in any of those manners, it wouldn’t change the fact that the cancer is still taking over his body. She went on to discuss alternative things we could chose to do or not do which included things like nutrition, antibiotics, and transfusions. She explained that doing transfusions to support him right now in order to give him a better quality of life is perfectly acceptable. But that as the disease continues to progress and Cade starts to need transfusions every few days or daily, then at that point it will no longer be for comfort and the team would advise that we stop doing transfusions. Tears continued to roll down both of our faces as she went on to say that dying from anemia is a peaceful way to go and would not cause him pain. Once we were finished I returned to our room where Cade was awake now, having slept all day, and he was doing his iPad. I sat next to him and called Chris back. As we were talking and deciding that at this point to allow our immediate family over to see him, Cade started to yell about something on his iPad. He was on YouTube kids and his screen had suddenly went black. He was all frustrated asking me what was wrong, what was happening. I looked at it and saw that it was entirely black with a sentence at the top of the screen in turquoise. I told him I didn’t know what happened and leaned in closer to see what it said. As I began to read it out loud, it was a scripture verse.
“Do not grieve, for the JOY of the Lord is your strength” – Nehemiah 8:10
I tried to get my camera on my phone to take a picture, but it was gone and right back to YouTube kids. I could not believe this. I have never seen either of their iPads do such a thing when on YouTube kids. Or ever for that matter. This was a sign, and one of the craziest signs I have yet to receive from God. And of all verses. Of all days. A day completely filled with grief. A day that I had literally just signed a DNR for my son just minutes beforehand. I shared this with my grandma who has been devoted to praying, doing novenas, fasting, etc. for Cade and she shared with me that she and her friend both had visions that same afternoon along the lines of darkness going or turning to light.
The next night as I put Cade in the bath I noticed his left shoulder was red, swollen, and very tender. And that the veins going from the middle of his chest up to that shoulder were very prominent and vascular. This is the same side that all of his lymph nodes/lump had began. In a panic I messaged Katie and she said she feels it is disease spreading to his shoulder and possibly his chest and suggested I call hospice. I was devastated. I did and they doubled his oxycodone dose to get him more comfortable. Pain control has been a continuous battle and work in progress for him. We have worked closely with our team and they have been wonderful at working to keep him comfortable knowing that we had him on the CBD/THC oil as well. We were gradually increasing his TCH every few days with an end goal of 600mg THC daily. With these big changes of progression, we figured what do we have to lose- we are increasing him daily as long as he tolerates it. No surprise at all that Super Cade tolerated it with no problems at all and as of this past Friday we made it to our goal THC. We have made changes to his methadone too, changing it to 3 times a day with a slightly higher evening dose in attempts to keep him comfortable through the night as that seemed to be a consistent time of break through pain for him. He went from using oxycodone 3-5 times in 24hrs to using it basically once a day, which is great. This makes us feel like we are in a good spot right now with his pain control for the most part. Initially he was still standing to pee and surprising us by walking or trying to. But sadly, Cade can no longer walk. He hasn’t taken a step since March 22 to be exact. He cant even stand to pee any longer because the pain is so great. He just cries and hangs on to my neck as I try to get his pants down and get him on the toilet as quickly and gently as possible. One day Rylan was about to play with the special ice cream cart toy we had bought for Cade that he had yet to touch. When I explained that he hadn’t even touched it yet and it has been sitting there for days so Ry can play with it, he about jumped off the couch to try and walk to it to play with it first. I could hear in my head him saying “Like hell you do Rylan, that’s my special toy!” Haha. He made his point, so I moved him to the floor and he got to play with it first.
Every day it seems like I find a new swollen lymph node or lump and it kills me. His left arm is swollen and his entire right leg and foot are swollen. These are areas of disease and are very painful to him. Then it moved to his groin and the other weekend his scrotum was so swollen it looked like a water balloon ready to pop. Initially I saw his face round out a bit and thought he was gaining weight from the nutrition we were giving him in the NG tube. But then as I began to piece everything else together I realized it was edema. The more I observed his body and found new lumps, the more I began to realize that the swelling wasn’t fluid retention, it is his lymph system. The cancer most likely has moved to his lymph system as well and is doing this. The other day a lump I knew was in his armpit like a small node, became the size of a large gumball overnight. We are trying to be hopeful that maybe his body is fighting and trying to react and respond. But the nurse in me feels like it’s the cancer spreading through the lymphatic system. Which if you don’t realize and have never seen it, its pretty incredible to see how this system intertwines throughout our entire body head to toe. You don’t really ever think about it until you’re sick and feel a tiny lymph node swell up along your jaw or on your neck to warn you. That’s also what’s happening with his face. It’s swelling the lymph nodes along his jawline too.
It’s a lot to take in. And it’s heartbreaking when he cries that his knee hurts or his arm and asks if it will ever go away or if we can fix it or whether or not they can fix it at the hospital. He’ll cry and ask for ice or more pain medicine. With Cade progressing like this, we felt it was time to tell Rylan the truth. We told him a couple weeks ago and it was heartbreaking. He took it well for a 6yr old in the simplistic, black and white way that they view and understand the world. We told him that Cade is having a harder and harder time fighting and he said “so we pray…at least I do…to myself” and I explained absolutely we pray and told him that I pray every single day, constantly, praying to Jesus and asking him for a miracle to help heal Cade. Then went on to explain that we just don’t know. None of us know how much time God gives us on this earth, and while we can pray every day, we don’t know whether or not we will get a miracle for Cade…and if we don’t, we don’t know when, but if we don’t then that means that Cade is going to have to go to Heaven one day. He looked at me, not one tear in his eyes (as Chris and I are practically balling) and said “he’ll be back though” and as I thought to myself oh boy and took a breath to explain this more, before I could get a word out, he continued with “as your angel. He’ll be back for you mom.” I choked back my tears best I could and said that he was absolutely right, Cade would be back as an angel for ALL of us. We let him know it was ok to cry or be angry or upset, that all of those were valid and appropriate feelings. We apologized for being short tempered with him at times and for not being able to give him the time he deserves some days because Cade needs our attention so much, and assured him that NONE of this was his fault and nothing that he did. And that was that. He had no questions. We keep periodically checking in on him asking if he wants to talk about anything or if he has any questions. Whether he understands what’s going on with Cade. Right now he says no, he’s fine. He just loves on Cade as much as he can saying good morning and goodnight. Saying prayers to him some nights, reading to him others. Asking to crawl in to his bed and snuggle with him in the mornings. He isn’t always welcomed by Cade, and on those occasions he does his best to shrug it off and say it’s ok and give him a kiss and walk away. But I know it makes him sad. It fills my heart and breaks it all at the same time. All of it.
This past weekend Cade continued to decline. He was napping on me on the couch and I noticed his breathing was irregular and he was going apenic occasionally. I put the finger pulse ox we have on him and his saturation’s were in the 70’s. I immediately put him on a little bit of oxygen and they came up to 99%. We were 5 days out from his last transfusions, I knew he already didn’t have enough hemaglobin left in his body to oxygenate on his own. We worried what this meant, whether or not he would make it to his transfusion appointment today. We weren’t sure how bad of a sign this was. Regardless, it was definitely another sign that the end is getting closer. We had our family over on Easter so that the cousins could see him just in case they wouldn’t have another opportunity to do so. We also had Father Christian from my grandmas church at our house and had both of the boys baptized. Then to our surprise, Cade wanted to go for a walk that afternoon, so we had a big family walk…probably getting glared at by everyone for totally disregarding the social distancing rules. But we didn’t care. This was an exception. We did make it today to the hospital, his hemaglobin was 4.2 and his platelets were only 2. The lowest they have been ever. He got blood and platelets and we tried to take him off the oxygen after he got the transfusions, but he slowly dropped to 90 and his HR increased which were signs his body was working to hard to breath without that little bit of help. So he remains on oxygen continuously now to help him. We will continue to transfuse him for comfort and quality of life as he has been having a lot of great moments getting up to the table to play and going for walks enjoying the fresh air and sunshine whenever we can. Dr Tanaka came to say hi to us today and told us how impressed he is with everything we are doing for Cade and how we are handling all of this. I asked him if these changes meant anything imminent to him and he said no. We still don’t know. It will depend on his organs and how well they tolerate things going forward, as they are starting to show us signs of having a hard time. Mainly his heart, lungs, and blood/bone marrow. He said it could be a few more weeks, but that truthfully only God really knows and to just keep doing what we are doing for him. Continue to utilize and communicate with hospice and them and they’ll continue to support him with transfusions while they can.
I still continue to see signs this past month. Cardinals flying from our trees. The crazy iPad message. Another woman named Rita who I spoke to when trying to set up a payment plan for a bill, which is a long story. Then last weekend I was trying to print out the next weeks of e-learning for Ry and was on FB to see what I was supposed to do. Opened another tab for our school district, then found the stuff and printed it. As I was printing I heard this lovely instrumental music. I thought weird, maybe the district has music playing on their page?? I just continued to enjoy it as I finished printing and organizing the weeks of work. Then all of a sudden this man started speaking from the computer. Scared the crap out of me. I had no idea what was happening. I went back to the tab with the FB page that was open to our Kindergarten private class page, and somehow it wasn’t in our private page, but instead there was a sermon of some Christian church and it was their live streaming service beginning. I found this very strange, but wondered if there was something in this message meant for me to see. So I watched it and the entire sermon was about Faith and trusting in God. It referenced Psalm 31 and went on to say that God uses stormy experiences to build faith. I still continue to have multiple different Christian song lyrics that come in my head throughout the nights when I’m up and down with Cade. This past Friday night I had a dream that Cade was walking. In my dream he was having trouble walking, like he just got up to start and was weak, but he was walking. Then last night, Easter night, I had another one. In my dream I was talking to one of my best friends and here through the doorway towards me walks in Cade just giggling away like he knew something I didn’t. I was shocked and was trying to get a video of him walking to send my friend because I couldn’t believe it, and I tell him to go and show daddy and Ry, who were sleeping in the next room, to go in and surprise them. And then I said to Chris something like “if this isn’t a miracle straight from God, I don’t know what is.“
I don’t know what any of it means. Maybe that our miracle is coming? Maybe nothing at all. Maybe God is simply letting me know that he is here, giving us strength, and letting me know that Cade is going to be alright. Because I tell Cade this a lot. He wants to play and jump on the trampoline and ride the gator and do things with Ry that he used to always do. And when I tell him that he can’t and remind him why, I immediately tell him that I promise he will walk again. He will run and play and jump on the trampoline and play in his tree house. He will get to run and play with Ry and his cousins again one day soon. I promise him all of this and he says ok. And I know he will do these things. It just may not be here on this earth, but I know he will run and play again like every little child deserves to do. I am trusting in God. Trusting that he is going to take care of everything. I know I need to prepare my heart for the strength to say goodbye, while at the same time praying for the miracle that we won’t have to. 🙏🏼
The one thing I do know, is that there are truly no words for the amount of love and support that has been given to us since receiving this devastating news. The donations that have been given to us to help us pay for all the supplements and THC oil that we are doing for him to try and help him. The meals that have been sent to us and made for us. A sweet woman who is a friend of my friend, she doesn’t even know me personally, but has literally dropped dinner off to us a handful of times, even homemade treats for Henry. The thoughtful gifts sent. Heartfelt messages checking in on us and letting us know you’re loving and thinking of us. And the parade!!! The parade that began as Cades sweet daycare teachers wanting to do a “little” car parade to make him smile when they learned that things were quickly progressing and it turned in to 200 or more cars, police cars, fire trucks, tractors. Friends from an hour away in multiple areas came. Coverage of it in news papers. A family friend even saw it on the TV news in Phoenix!! This parade was an absolute INCREDIBLE outpouring of love from our family, friends, and community. We were moved beyond words. It is THIS. ALL of these things. Every single one of you are helping to carry us through this storm. You are making this the best that it can be for as dark of a time as it is right now for us and we cannot even begin to thank you all enough. It truly means more than you will EVER know. Your prayers, your love, and your constant support. God bless you all. Thank you! We are still praying for a miracle. But in the meantime, we know that every day is a gift. And we are blessed for every single one that we continue to get with our precious warrior Cade. Sending love to you all. Stay safe and healthy. ❤️
Our Warrior Journey 