Yesterday was a long day. I was doing good until I got out of the shower and then suddenly anxiety of some form took over my body. I wasn’t comfortable with anything I put on my skin and I knew we were going to be at the hospital for hours. I just wanted to be comfortable and read my book as a good distraction while we sat for the few hours waiting. We needed to leave the house or we were gonna be late. I was all out of sorts and kept changing clothes. Chris said he could just see me spinning in circles so he started to get on me about getting out the door. I grabbed our bags and almost forgot our usual stuff we bring. Cade likes to bring his pillow and his little Superman as well as his Superman blanket. And of course monkey blankie. Then I like to bring a blanket that was made and blessed for him too, I just put it in his pillowcase to be close to him. I run upstairs, frustrated, to grab it all and out the door I run. Ten minutes in to the drive I look down at my bag and realize I didn’t put my book in there. I didn’t have my iPad in there because all I wanted to do was read. This was more frustrating. Why did my day suddenly turn like this. This was a bad sign. It had to be. I could just feel the tears welling up in my body and trickle down my cheeks. I started praying to God asking him to help me and take these feelings away from me, I needed him to be with me today. Right now. Then I hear Chris ask me why I’m crying. I don’t know I tell him. He reached over to me and said “keep your faith baby. Keep holding on to your faith. Everything is going to be alright, we’re gonna get some good news today I can feel it.”
We pull in to the hospital and I realize in my craze at home I also managed to leave my phone behind. Great. The day just keeps getting better. We get in to MRI and they tell us that they’re going to have us go to IR first instead because they wanted to do the LP first now. So we get up there get all ready and finally an hour later they bring him back to get started. They let me gown up and go back in to their sterile room with him until he fell asleep from the gas. This is what Cade is used to. It was our routine every day at radiation, so I was grateful they allowed it again. He was so brave and did awesome as always. From there they took him straight down to MRI after they were finished to begin the brain and spine MRI’s. Chris and I got some lunch and then spent the rest of our time waiting in the MRI room. He was nice enough to share his iPad with me and we watched a show together for distraction. The anesthesiologist walked in to update us that Cade was doing well and they had about an hour or so left. We had an appointment to go to clinic right after and meet with Dr Knipstein to get the MRI results before we left. Cade didn’t even get back in to the room with us until 4:15pm. The nurse had called Dr Knipstein to let him know of the delays and he was kind enough to just come right down to our room and discuss with us there instead of making us come up to clinic. He walked in and pulled up the MRI’s on the computer to discuss with us. He had the ones from April, the ones from our admission scare at Lurie’s in May, and then the ones that were just done. He pulled them up side by side and began to go through and compare with us April and May. Basically showing us that everything had gotten significantly larger and there were a couple new spots that had developed by May from the tumor cells continuing to grow that weren’t there in April. Chris was pacing and seemed so nervous. Well what I didn’t know until the car ride home was that he hadn’t heard what Dr Knipstein said right when he walked in to the room. He knew he said something, but didn’t know what. So he waited in suspense as the oncologist slowly took his time going through and comparing every last thing for us. I however, had heard him.
The nurse came in to let us know he was there and opened the other door to let him in. Dr Knipstein entered our room with a smile on his face and said “it looks 5 million times better.” This was the first time he had literally gone through showing us every tumor from the April scan when we learned about the relapse and also the first time anyone had gone through and shown us the details of the May one. All we knew was things were worse on May’s scans and that he was urgently started for radiation because of this. That was scary to see how big everything had actually become. Spots that were specks or small spots that had become large spots and masses or clusters of tumors. Then he finally pulled up the scans that had just been done and went through each spot matching up the same slides across the board. He pulled up the spine and said if he was being over analytical he could maybe see a little something still there, but that really it looks more to be artifact meaning the spot and the coating of tumor that was seen in May that was spreading is all gone. The spine looks good. He went on to the brain and showed us slide by slide comparisons of every single spot. About a handful of the spots are completely gone! The areas of largest concern that were in the cochlear areas of his ears and the tumor at the brain stem that by May had become a huge mass along with several small tumors all around the brain stem. These are all small spots or fractions of a spot now that still remain. He went on to say that it’s hard to say what all these spots are. Whether they are active tumor spots waiting to grow, if they’re spots that are stunned and still being killed off by the effects of the radiation, or sometimes they’ve seen that the spots are clumps of the dead tumor cells that just sit there and show up on the scan, but don’t do anything. For some, they’re always there, other times they may eventually slough off and disappear (if that’s what the spots are). He explained that radiation can continue to work for 2-4 months form the last dose given, so it could be possible too that radiation is still working to kill what we are seeing at this moment. Though things look much better, he would not advise not doing chemo. Which had never crossed our minds either. They will do MRI’s every 3 months through the treatment and see what is happening based on the scans as well as how Cade’s body is tolerating all the chemo and medications to determine how long he will need to do chemo for. Whether it will be for the whole year, longer than a year, or if it will need to be stopped sooner. Cades blood counts also looked great he told us, so the plan will be to start chemo on August 5.
We didn’t get home until 7:30pm so it was a long day and a very late bedtime for everyone. As I laid with Cade for our usual snuggle routine at bedtime, I talk with him always. I know doctors and everyone talk around him and he’s a bright boy so I know he hears things and absorbs at least some of it. So I wanted to address it. I told him how great he did and how brave he is. How proud of him I am. Then I went on to just briefly say that Dr Knipstein said the pictures today (that’s how he understands the MRI’s, we say they take pictures of his brain) looked really good, that the tumor is getting smaller (we don’t speak plural, we’ve never told them there’s multiple). I said we would be starting chemo soon and we just have to keep doing all the medicines and things the doctors are telling us and that he is doing amazing with everything. Then we trade. I snuggle with Ry and Chris with Cade. As he snuggled with Chris they talked too. Cade asked him “is my brain tumor still there?” And “will I be done with chemo some day?” A couple weeks ago he had also asked me if his hair is ever going to grow back. He misses it. This just breaks our hearts. It’s all he knows. This has been his life for over a year now. He knows more medical jargon and info than any toddler should ever know. He turned 3 while in the hospital for chemo, and here he is, about to turn 4. And will do so again, spending his birthday in the hospital for chemo. Yes my sweet boy, one day you will be done with chemo. I pray to the Lord every night that you will soon get to go back to your childhood and just being a little kid again. You and Rylan both.
All in all, this was great news that we really needed. The positive news we had been hoping for. To know that everything that we are doing is working. The radiation. The supplements. Our faith. Everyone’s prayers. Everything is helping. We are moving in the right direction. One step closer to that light we once saw and are confident we will see again. Thank you GOD for your protection and healing. And thank you prayer warriors! Thank you for continuing to keep Cade and all of us in your constant prayers. We love you and are so grateful! ❤️
Our Warrior Journey 