Yesterday we received the worst news imaginable. The worst case scenario that could have come out of this situation. The outcome that we were praying for anything but. Dr Tanaka called us to tell us that the biopsy results were done and that they show that the medulloblastoma is in Cades bones. He said that he would really like to talk more with us in person and asked if we could come in. My mom happened to be at my house and stayed with Cade. Within the hour Chris was home and we were in the car for the most agonizing hour long drive to the hospital.
We arrived to the hospital and were brought in one of the conference rooms, a place we have never had to sit in before. We were met by our nurse Suzie with a tearful hug. Dr Tanaka, our NP Katie, Laurie the NP with Palliative Care, and Jeff the child psychology all came in to speak with us as a team. Dr Tanaka walked in the room straight to me and hugged me while saying sorry, he wished so much he had better news for us. Hugs followed from everyone else. Then we all sat. Dr Tanaka explained that the pathologist looked at the bone marrow under the scope and saw a lot of medulloblastoma cells present in the marrow. He said he then went down to the lab personally to look at the sample and see it for himself. He too saw very many medulloblastoma cells. This unfortunately tells them the answer for why Cade has had a hard time with his count recovery. The medulloblastoma cells are occupying the space of the marrow making little room for the bone marrow to produce healthy cells. It also explains why Cade is having such a hard time walking and Dr Tanaka went on to say that when it takes over in the bones, it is very painful. The lumps and lymph node reaction may very well be tumor as well, especially if they are continuing to get bigger.
The next words were words we anticipated, but that no parent is every truly prepared to hear.
“There is nothing more that we can do.”
Dr Tanaka explained to us that once medulloblastoma figures out a way to move outside of the central nervous system (the brain/spine/spinal fluid) it finds another spot to aggressively attack. Medulloblastoma spreading to the bones is incredibly rare and only happens in about 1-3% of cases. Dr Tanaka worked at St Jude prior to coming to CHW and he said that in 400 cases he had there, he saw it happen in about 6 of those cases. Medulloblastoma can reach a point where it becomes resistant to treatments and when it gets to that point and it gets bad, there is no stopping it. Never in a million years did we think we would be here. Cades original tumor pathology seemed SO favorable. He had no amplifications or gene mutations, his cells were not aggressive in nature, he had 99% of it removed surgically. But he was young and he was not a typical WNT or SHH as they refer to the types of tumors, and for his age at diagnosis, and not having those styles of tumors it was rather rare and I guess made him more of an unknown category. Just goes to show you, you never know what can happen no matter how favorable you think your odds are. I honestly remember thinking and feeling that we were so lucky to have his tumor pathology end up as it did. There were times I truly thought to myself as I learned how many brain tumors and pediatric cancers there were out there, that we were lucky to end up with this one if this is what our path had to be. Feeling grateful in the beginning, that our treatment was done after only 6 months and he was in remission, knowing other families battle other even rarer cancers for years. Watching other families heartwrenchingly lose their children, all the while feeling so grateful at how incredible Cade did every step of the way. Little did I know or understand what an absolute beast our particular cancer really was. I remember always being terrified of having a baby with Down syndrome or some type of disorder, feeling that God would chose me to have such a child because I’m a nurse. Stupid, I know. Not once for a second did I ever fear having a baby who would one day end up with cancer. Yet here I am. God chose me after all. Seems like the joke is on me. How naive to have had all these thoughts and now here we are in the same damn spot as so many families my heart has ached for since entering this world that everyone thinks is so rare. Pediatric cancer is not rare.
Our meeting continued with the plan for Cade. My broken hearted husbands one request as he sobbed next to me trying to get his words out, was that he just doesn’t want him to suffer. (My hands are now trembling as I try and type this) The main focus going forward due to the pain that his body will endure with it now attacking his bones, is that he is comfortable and not in any pain. The palliative nurse advises using methadone with morphine as needed for breakthrough pain. Our hope is to be able to alter his CBD/THC oil concoction so that it can provide more relief to him and we can avoid or minimize the use of these opioid drugs. Our team is willing to completely honor this and be transparent between themselves and our cannabis doctor to find a safe and effective balance or plan for him regardless of what drugs end up being involved. They will support him as needed with blood and platelet transfusions in order to help him feel better so that he may have the best quality of life with the life that he has left. While I know they can’t give us a definite answer, I asked Dr Tanaka if he had a guestimate of how much time he is referring to. His answer was it’s hard to say, but probably months. There was a lot of silence as they gave us all the time and space we needed to even try and absorb this. They talked about comfort measures and the involvement of hospice care, asking what is most important to us if we are comfortable being home or would rather be at the hospital, etc. Every person in this meeting was so compassionate and empathetic towards us. You could see it in their eyes that they are devastated as well. Cade has a way of getting in to your heart, and everyone who has ever taken care of him there and really gotten to know him, just adores him. There was mention of possibly admitting Cade in order to get some stuff done and Dr Tanaka so kind heartedly said that he would prefer not to do that. Admitting him means delegating what he wants done to the inpatient team, and he wants to look after Cade personally himself. We made a plan for Cade to come back the following day, today, for some blood, platelets, and fluids and possibly a feeding tube. The meeting concluded on our terms, when we were ready. We walked out of the room numb and drove home in silence taking turns crying. The weather cold and rainy with the darkest cloudiest sky. A complete reflection of our day.
Cade had a very rough and restless night last night and his morning wasn’t much better. Today we went back to the hospital and the drive there was miserable for him. He just cried that his legs hurt, his arm hurt, his feet hurt. Everyone could see his misery when we walked in to clinic. They got him accessed right away and sent his blood work off and then immediately worked on a plan for his pain control. I had given morphine at home, they gave him another dose as well as a dose of methadone. He surprisingly didn’t need blood, but did receive platelets and some fluids to hydrate him. They were hopeful that this would make him feel good enough to eat in hopes to avoid the feeding tube. But it didn’t. In the end they left the cards in our hands and I told them I wanted it. Yes, it would be miserable putting it in, but he needs it, I told them. He is so hungry. The desire is there. He asks me for a snack every 10 seconds, but wants to eat nothing or says he doesn’t know what he wants and asks for a snack again. His stomach probably hurts from being so hungry and I felt like that was adding to his discomfort and irritability. Plus medications were starting to become a battle and we don’t want to do that with him either. A feeding tube means no stress for him for whether he eats or not or whether he wants to take his medications. Dr Tanaka said that we can continue to give him whatever we want as far as supplements go, and we fully intend to. He is a fighter, always has been. I’m going to do everything that I can to help his body fight and feel as good as possible until the end. So we put the tube in. He hated every second of it as we fully anticipated and tried to pull it out multiple times. Got a good hold of it once actually, the sneaky little thing. I’m hoping he’ll adjust to it quickly like he did in the past. Through all the tears and frustrations I held him tightly snuggled on my lap on the hospital bed talking to him. Telling him he did nothing wrong, the tube is just temporary, and telling him why it’s going to be a good thing. He popped his head up through his exhaustion and tears and just looked at me so matter of fact and said in the sweetest voice ever- “momma, can I have a kiss?” As he came towards my face with an open mouth, gave me a kiss, and then snuggled right back on to my chest. A moment I will cherish forever. The hospital had some samples of the same pediatric formula we had used before, which was wonderful. He tolerated that great before, so we chose to use that again. The dietician gave us a great typed up plan of how to slowly start him off and advance him for the time being until they get the orders sent and approved from insurance. My NICU skills will come in handy after all. They gave him a couple ounces of it before we left along with some oral morphine and some anti-nausea medication through his port so that he would be as comfortable as possible for the drive home and hopefully through the night. It worked. He slept the entire ride home and is sound asleep in bed.
I go from one extreme to the other. Belief to disbelief. Tears to numbness. We are definitely still processing it all as it doesn’t at all seem real. We have made the decision to NOT tell the boys. Not right now. So please, if you have children that are friends with ours, we would be grateful if you please don’t share this information with them. For the time being, when the questions come up, we are choosing to just simply tell them that Cades body has been fighting really hard for a while now, and it is just having a harder time fighting right now and that we are doing different things to help keep him comfortable and help his body feel better. When the time is right to be fully open and honest with Rylan, we will know. But we do know that that time is not right now.
I still have seen signs from God over the last few days. I don’t know why or what they mean or why this is happening. The song “It is well with my soul” literally played like a record in the back of my mind the entire drive to and from the hospital yesterday. It was there even behind all the thoughts in my head. I’ve never had that happen, it was weird. And I don’t know why it was there, a couple times I even looked up at the sky and thought “Why is this song in my head? NO! No it is NOT well with my soul! You better show up God and you better show up big because this is not ok!” None of it is ok and none of it makes sense. Maybe God is still at work. Maybe I’m in pure denial right now, but my heart just doesn’t fully accept that this is the end. That this is how it is all going to end. I’m not accepting that. Not right now. There are thousands of stories out there about “radical remissions” and people exceeding the time they’ve been given. Cade is going to be one of those cases. I’m praying that God somehow still has a plan…and that it is to show us once again, that MIRACLES CAN HAPPEN!!
Thank you all for your immense love and support. From day one and especially over these last several days. Our family, friends, neighbors, strangers…every single one of you is helping to hold us up right now. You’re helping us to keep moving forward. Thank you for loving Cade and our whole family so passionately. Please, please continue to pray for healing for our sweet boy. Pray that God gives us a miracle! ❤️ ❤️ 🙏🏼 🙏🏼 🙏🏼
Our Warrior Journey 