Well we finally heard back yesterday that Nationwide also agreed that Cades scans are all clean and that any spots present were scar tissue from continued surgical changes and just a vessel in the spine. This was very reassuring. I will honestly probably not be 110% reassured until Dr Ruge also views the scans, but that’s just because I’m bias and I trust him so much after everything he did for us and the amazing care he gave to Cade. Nonetheless, it is great news and a big reassurance/relief that they viewed it as, what they call, a “complete response” to therapy so far. We also learned that since he moved forward in that bracket, they did the trials randomization and he was randomized to receive the 3 rounds of heavy dose chemotherapy.
Chris actually knew this before me as he had talked to our nurse on the phone. When he walked in the house and told me this my heart sank. I made sure he wasn’t kidding, because he likes to do that to me a lot. He said no, he wouldn’t kid about this. Then I cried. I was so hoping that he was going to get the 1 super heavy dose round and then we would be done. It would have been only one more month until this would be over. Now it will be three more months. But then again, I guess it’s never really over. There will be years of repeat scans and tests. And worry. Worry that it will come back. But that’s neither here nor there right now. The light is still at the end of a long tunnel. A longer tunnel than I was hoping for. Chris and I talked more about it and he reminded me that from the beginning we had said that whatever happened in the trial would be what is meant to happen. That God would know what he needs for whatever the reasons are. This treatment, the 3 heavy doses, is no different than the standard protocol treatment that he would have received had we gone anywhere else. The standard treatment is 3 regular rounds and 3 heavy dose rounds. We chose to do the trial in hopes he could possibly be spared some of the heavy medications. Knowing that if anything, he would still get the standard treatment anyways so we felt there was nothing to lose. Chris knew I was upset and he tried to comfort me. He said to me that maybe his little body just isn’t meant to tolerate the one extra heavy round and he pulled up the information from the trial and showed me the difference between the extra heavy dose and the heavy dose. The 1 extra heavy dose consists of 3 chemo medications and he would receive chemo drugs for 6 days straight then have 2 rest days and then the stem cell transplant. The 3 heavy doses consist of only 2 drugs and he will get both drugs for 2 days. Granted he will get this 3 times. But each round he will get only 2 drugs for 2 days and then he will have 2 rest days followed by the stem cell transplant. When he showed me this it put it in to a better perspective for me. He will be spared 4 days of chemotherapy. Even though technically he will still get 6 days total of chemotherapy drugs, they will be separated by a month each time. He will only have to get 2 days worth each round. I started to feel better about it. Afterall, this is the standard treatment that has already been proven for treatment of medulloblastoma.
I had shared with Chris that I was texting with my mom about it and she had replied to me that she hadn’t been sleeping well the last few nights. She had been praying a lot for Cade for the trial, but was not feeling peace about it. Something seemed scary and very intense and she was sleeping restlessly waking up praying in the middle of the night. Then she told me that last night (Tuesday night) she prayed that it is in Gods hands and he knows what is best for Cade and said she felt at peace just praying that and because of that she believes that the selection of 3 will be the best choice. Then I got to thinking about it more. Maybe this was why we had to do the harvest for 3 days. That somehow, in a round about way, while they weren’t hopefully they would, they did manage to collect the 8 million stem cells they were ideally wanting for Cade in the event that he was chosen for 3 rounds and not 1. We have the amount they wanted to be able to give him after each round. God already knew then that he was going to get the 3 rounds. I trust in God, he has Cade in his hands, and he has done an incredible job at protecting him thus far. I felt more at peace with it.
We went to the hospital today for his kidney function test and our clinic appointment. When we got there he asked me if we were getting a room today. I told him nope, we get a few more days at home and would be back next week to see all his friends. Cade did amazing with his dressing change, like always. This time helping the girls to put on the “sticky remover” so it didn’t hurt as much to take it off. He had even handed our masks to us and asked for his special little one with the smiley faces on it. This kid cracks me up. Then we had our appointment where we talked to the doctors all about the next phase, the consolidation phase, and gave our signed consent that we wanted to continue with the trial and treatment. We learned about the 2 drugs he will receive, Thiotepa and Carboplatin. Thiotepa is one I had heard about from another parent I talked to as our little ones stormed the halls around each other, both close in age and early risers. This one is excreted through the skin and because of that, they have to take special mineral baths three times a day. Yes, you read that right. THREE TIMES DAILY! I am not at all looking forward to this, especially because we have to wrap his line every time because if it gets to wet then the dressing has to be changed. I mean don’t get me wrong, he loves water. He has taken a couple baths since we’ve been home and it was actually quite adorable. He sat in the small amount of water in the tub and let out a delightful little sigh as he said to himself “ahh the water feels so good.” And he is adjusting to the press-n-seal Saran Wrap better. But still, three times a day, and for at least a week they said because it has to be done for so many additional days after he receives the doses until it clears from his system. Otherwise I believe it can cause burns and sores on the skin which is why they do this. And this same drug, in heavy dose rounds, can cause mucositis too. Just when I thought we were out of the woods with that since he was done with the Methotrexate. I was wrong. His boughts of mucositis were pretty mild his last 2 rounds, knock on wood, so hopefully he doesn’t get it much worse with these rounds. Fingers crossed!! 🙏🏼
They submitted everything to the insurance late this afternoon when we left. Now it is just another waiting game with my insurance and how quick they will approve the next phase of treatment. The doctor intends to call them tomorrow and essentially stalk them for the next 2 days urging them to expedite this process in hopes to be able to start round 1 on Monday. As she put it, “we don’t really like to give cancer long vacations.” If the insurance doesn’t approve it by Friday, then they are hoping to start no later than next Thursday. But everything is on such a time line that if we can’t start until Thursday then both his hearing test and the kidney test we just did today will have to be repeated because one has to be within 14 days of start of treatment and the other within 7 and Thursday would be 1 day past both of those requirements. Very annoying. You’d think that insurance would look at it from a cost effective standpoint that if they make an urgent decision then they will save themselves from having to pay for both of these tests to be done again. That just makes sense though. So now we just wait. We’ve gotten pretty good at this. It’s become a common theme since this all began. Wait. And pray. Pray that the good guys are working tomorrow and Friday. The ones that have a heart and can understand where our oncologist is coming from in the urgency behind her voice as she explains the importance that treatment begins Monday.
Until then, we are going to continue to enjoy our time at home. Cade was pooped today. He didn’t get a nap and finally passed out at 4:30 on our way home in the car. We transferred him to bed and he has yet to wake up. Just woke him up to make him pee, change him into pj shorts, and put him back in to bed. Maybe the whole week of fun is just finally catching up with him and he will have one of those 15 hours of sleep nights he sometimes does. Or maybe I’m going to be up with him at 2am pulling 7 different things out of the fridge for him to snack on. I’m hoping it ends up being the former. I should probably go to bed though just in case.
Oh, I almost forgot. He’s doing amazing with his feeding tube. He adjusted to it within 24 hours and is very conscious of it. He gets very upset at Henry because he sometimes sticks his face really close to Cade and I think his big nose bumps Cade’s nose just right that it hurts him and he cries. He has not shown Henry as much love as normal this time home. But he is doing good. He is doing great with the Kate Farms pediatric formula. We gradually advanced his feedings per the dietician’s instructions over 4 nights working from 1/2 of a carton to 2 cartons which gives him 50% of his daily caloric needs and 100% of his daily protein. He is tolerating it without any issues and has to poop almost first thing every morning. Sometimes he wakes up from sleep saying he has to poop. Haha. This morning I had run some water through the last hour while he was sleeping just to give him a couple extra ounces of fluid, and when he woke up he saw the tubing was clear and said to me “I’m pretty sure that’s done. It’s all done. You can unhook me now please.” He asks at night if it’s time to hook him up. He likes to help flush both his feeding tube and his lines. And he’s loving not having to take his medicines by mouth. Even his marinol that he usually takes in applesauce, he sometimes still does, and other times (like this morning) he says to me “no, you can just put it in my tube.” So funny. I’m very grateful at how well he adapts to all of this. Though no 3 year old should ever have to be doing any of this. He should just be getting to be 3 and playing with his friends. He does make it easier to tolerate as a parent though when he’s so darn cute and funny about it all. My sweet boy. Best part of it all is that today in clinic he weighed in at 15kg which is 33 pounds! This was so exciting to see. At the end of his last round when we decided on the feeding tube he was down to 29 pounds. The IV nutrition he had for a few days and the pediatric formula have done wonders already. This was so reassuring. We made the right decision.
Uh oh. I spoke to soon. Cade was just crying from the bedroom. I walked in there and he said to me “I wanna eat a waffle.” Haha. So now we are sitting in the living room having blueberry waffles with butter and chocolate milk. And now we are moving on to turkey and pickles. The snacking begins…
Thank you all for your continued love and prayers. Goodnight.
Our Warrior Journey 