Whirlwind

I wish I could say things have been uneventful since my last entry, but a lot has happened since then. The following morning after I called the proton center and gave them a piece of my mind, the nurse had called me back to let me know that they could get us in for a consult appointment that Thursday afternoon. As I mentioned, we had already had the appointment set to get Cade’s port placed on Wednesday and meet with the radiologist at CHW following his surgery. The surgery went great, the surgeon said it went as well as they could have hoped which was a relief. He has adjusted well to having it too. We met with the Oncology Radiologist to discuss radiation. Cade basically slept through this appointment as he was still pretty drowsy from the general anesthesia. 

Dr Firhat basically told us a lot of things that Dr Knipstein had in relation to the effects of photon radiation. Knowing we had our consult appt with the proton center the next day, we informed him of this and asked his opinion of Proton being beneficial at all to him. He kind of said the same thing, that he didn’t feel it would save him much for long term side effects, but could spare him acute side effects of things like sore throat and nausea and vomiting because the proton would not go through the esophagus and all of the other organs. He said he could do Cades mapping, where they do a CT scan and figure out the exact plan and points of the radiation field for the individual patients treatments. And that they could start his photon radiation the following Tuesday (which would have been last Tuesday just to give a time line). We left CHW with this as our plan. 

The following day we went to our consult appointment with Dr Hartzel at the Proton radiation center. He gave us his overall explanations of radiation treatment and it’s side effects. Most of which we had already heard a couple of times at this point. However, he went on to explain to us that the difference between the 2 types of radiation are that with Proton you can tell it where to go and exactly where to stop, whereas you cannot do that with Photon. Photon is like an X-ray that goes all the way through. So in terms of the spine for example, proton can minimize acute side effects because they can tell it to stop at exactly the front side of the spine and keep it from affecting any of the organs in front of our spines. He then went on to discuss the brain. We explained to him that everyone has told us that when it comes to full cranial/spinal radiation that Cade would not really benefit much from Proton and there is little difference between the 2 in this case. This doctor disagreed. While he said yes, there are similar long term effects that are unavoidable when radiating the entire brain and spine, there are still things that we could potentially save him in the long run when it comes to the “boost doses”. Boost doses are what they do the last couple of weeks of treatment. They give radiation directly to those spots of large tumor and growth. Because they can tell the proton where to stop, he went on to say that we could likely save his hearing in his left ear and possibly have better outcomes with his right ear as compared to photon. He didn’t even mention side effects to his eyes and even went on to say that with the proton boost doses we could also see benefit in his learning center from not having to get radiation fully through the hippocampus which is where the learning center of the brain is. So his overall IQ, ability to process information, and short term memory may not be as significantly damaged. He went on to say that this same week he has seen follow up patients of 2 years, 5 years, 7 years, and just 3 weeks ago and they are all doing very well from a cognitive perspective. I asked him how quickly they could start him and went on to discuss our concerns that the scans were done almost 3 weeks ago and we have no idea how fast this is growing. Quite honestly I was ready to just ball. Here we’ve had one thing in our head this entire time, and now this doctor is coming in with an entirely different opinion and stating that he as well as the doctors on the tumor board at Lurie feel Cade would benefit from Proton. 

All I kept thinking was it was 5pm and I have to leave my house in the morning by 6am to get his mapping done to move forward with CHW. How am I supposed to make this decision right now. Dr Hartzel said he could map him monday and then start him about a week and a half to two weeks later. I said absolutely not. I’m not waiting that long. What is the absolute fastest you could start him. He replied possibly the following monday the 13th. He had to look at their schedules and consult his colleagues to see if they could make it happen that fast. We discussed further and came to the conclusion that we were still going to get the mapping done at CHW and that he would call me tomorrow afternoon to let me know if they could start him urgently on 5/13. On the drive home Chris and I discussed our feelings on the matter, both concluding that we said all along that if we could save him anything at all then we would do Proton. Did we have a whole extra week to risk waiting? We decided if he could start him on the 13th then we would risk the wait. As we said this out loud and agreed, a cardinal flew right past my windshield in to the trees. I just smiled. I always was told that cardinals are someone from heaven looking over you or checking in on you. My grandmother told me they are a sign of hope. We got up the next day and had the mapping done, which was a terrible experience that I will spare another paragraph of details about. I was honest with Dr Firaht about how the consult went and that we weren’t sure what to do. And he was very wonderful and professional about it all stating he would still do his job and if we ended up changing our mind to do Proton, it happens, and to just please let them know as soon as we know to cancel future appointments. I was leaving the hospital later that afternoon when I got the phone call from Dr Hartzel. They could start his treatment on the 13th. 

We enjoyed our weekend at home and went that next Monday (of last week) to the Proton center and had his mapping done there. We met with one of the Luries oncologists, Dr Waanders. I brought up to her that over the weekend I had noticed Saturday night that Cade’s right pupil was larger than his left one. Having never seen him she said she would note this as his baseline exam and we’ll continue to monitor him from here. The next morning he threw up a couple times. I just figured that meds upset his tummy. Then he threw up again Wednesday morning. I called to have Dr Hartzel notified of this and shortly after Dr Waanders had randomly called me to ask me about something unrelated. I figured while I had her on the phone I would clue her in and let her know between the pupil change and now the vomiting, which hadn’t been an issue this time around up until now, and that I was concerned. She agreed and asked that we go to Lurie’s ER to have a quick MRI done and see if there’s anything going on that would be of concern. Chris came home from work and had a bag packed just in case. I thought he was being a bit overboard. We weren’t going to be admitted. But I threw clothes in to go along with it. Well it’s a good thing he was overly prepared because we definitely were admitted. They did the quick MRI and next thing we knew, the resident neurosurgeon walked in to tell us that Cade was going to need surgery to help drain the spinal fluid that was building up. He would need a shunt or possibly another procedure that could allow a new path for the fluid down to the spine called an ETV, but if that wasn’t successful then he would end up with a shunt. A shunt is an indefinite thing, even when it’s no longer needed it is not removed. I have taken care of many babies with shunts and am very familiar. I hated this idea because it is just another source of infection forever. They were going to admit us and planned to do surgery later that evening around 6. We panicked. Dr Ruge is our neurosurgeon. Why did we come here? Why didn’t we just go to Lutheran?! Do I trust another team doing surgery on my sweet baby’s brain?! We expressed our concerns to them and I immediately called Dr Ruge’s NP Elizabeth and told her what was going on. I was ready to break down. All I kept thinking was how badly I needed a cry/freak out utility closet to run in to like they do on Grey’s Anatomy. The 2 teams spoke, they got the scan over to them for Dr Ruge to see, and Elizabeth called me back. She’s so wonderful and she assured me that they would do whatever we were comfortable with. They would be happy to have us transfer to them and have Dr Ruge do the surgery, but if we wanted to stay, Dr Ruge wanted me to know that Dr Bowman was also the best of the best and that we would be in excellent hands with her. She went on to say that she would trust her own children as well as Cade to have surgery done by this neurosurgeon. That was very comforting. Chris and I discussed it and chose to stay put. They intended to do surgery in about 5 hours, so it wasn’t worth transferring. And we trusted and valued Dr Ruge’s opinion. 

We were admitted to the neuro floor. Transport came for him around 6:45pm and I informed them that we had yet to even meet the surgeon, Dr Bowman, or any anesthesiologist. Next thing we knew, they left, and it wasn’t until almost 9pm that Dr Bowman and her team walked in to our room to tell us that they’re not doing surgery that night. She explained that she really wants to have a full MRI done of the brain and spine to get a much clearer picture of what’s going on prior to surgery, and that she wants to do what is best for Cade by doing all of this under one anesthetic and not have to put him under twice for these procedures separately. Their plan would be to come get him at 5am and bring him to MRI and from there to surgery. Poor baby had not eaten all day and now it would be even longer. We were thrilled to see that transport was in our room at 4:45 that next morning to take us down to MRI. Things were moving right on schedule. I just kept praying over Cade as we rode down…because he wont ride down unless I’m laying in the bed by his side. Praying for God to protect him, praying for the scans to show some sort of improvement. Which in my mind I was meaning tumor improvement. Let the one in the spine miraculously be gone or show that nothing has spread and there are not new tumors that have developed over these last few weeks. The anesthesiologist walked in at 5:15 to inform us that 2 emergencies just walked in and he was really sorry, but he was not going to be able to do Cade now. Chris and I were furious. Had we transferred to Lutheran the day prior, this would all be done by now. Dr Bowman assured us that she was confident it would be done still that day and they were trying to work it all out. They finally got him in to start the MRI at 10:45 that morning. We knew Dr Bowman was going to review the scans and speak to us prior to starting his surgery. She brought us in a room and sat down and pulled up the slides to discuss. She said that there is large tumor growing near the cerebellum that is growing in to or pushing on the vomiting center and that this is responsible for his vomiting that has just started, along with another one that is on the cranial nerves and probably causing pressure responsible for the larger pupil on the paralysis side of his face. She went on to say that she has spoke with Dr Ruge and at this point Chris and I both thought that the next thing that was going to come out of her out she was that he needed brain surgery again to remove the large one at his brain stem. However, the conversation took a very unexpected turn as she went on to explain that the ventricles themselves are only mildly larger than they were on the April scan and that both she and Dr Ruge do not feel that there is a need for any surgery for hydrocephalus at this time. Grateful tears were ready to flood out of my eyes. Thank you Jesus. He is hearing all of ours and your prayers!!! He is still trying to help us move those mountains. She went on to say that she has spoke to every one from all the teams and Dr Hartzel is finishing things up in order to urgently start his radiation the following morning on Friday the 10th. Overall the scans gave them a new baseline going in to this treatment. Things are more grossly evident overall. Whether this meant there are more, I’m not sure. But there isn’t less. The one in the spine is still there and larger. However there was still positive outcome to these scans. It showed them that he didn’t need to have surgery. That was huge. Dr Bowers said it’s a great time to start radiation. 

They started him on high dose steroids that afternoon and kept him at Luries for close monitoring. Friday morning Chris stayed with him and I went home to go to the Mother’s Day Tea with Rylan at his daycare. It was a nice morning. Chris went with on transport and they transported Cade to the Proton Center to urgently start radiation Friday morning vs. waiting to start Monday. They were planning to re-evaluate Friday afternoon to see if he could discharge sometime over the weekend. To our surprise, Dr Bowman was very happy with how he looked and allowed us to go home Friday night. We spent the weekend at home with steroid devil monster Cade. It was exhausting. An emotional, hypersensitive roller coaster of drama and anger the entire weekend. I wanted to cry a hundred times on Mother’s Day. Monday morning we drove to the Proton center to continue radiation treatments and we also had a follow up appointment with Dr Waanders. She too was happy with how Cade was looking. The steroids were helping and the pupil size was getting closer to normal so she was comfortable lowering his steroids from 3x a day to twice a day for the week and see how things go. The radiation itself can cause a lot of inflammation in the beginning, so they did say that if things got really bad, there was always the possibility that he could still end up needing the ETV/shunt surgery in the middle of treatment. We’re praying this will not end up being the case and praying that the steroids help everything hold steady and that they are able to continue to wean them as they see fit without any problems arising. 🙏🏼 

Radiation treatments have gone good so far this week. We are still having some troubles with vomiting, which we have to watch really closely to determine whether it’s from inflammation and build up of fluid concerns again, or if it’s just from the tumor interference with the vomiting center, or from the anesthesia. Cade is only 3, and because you have to lay as still as a statue in the exact same precisely lined up position every single time, not to mention with a skin tight netted looking mask strapped down over your face, he has to be sedated every single day. Otherwise there would be no way he would tolerate everything. The Proton center has been absolutely wonderful so far. It’s a beautiful center and they do everything in their power to make Cade comfortable and entertained. We are about a 1.5 hour drive from the center. It takes longer to drive round trip than it does to get his treatment from beginning to end. Cade was already getting really tired of being in the car on day 2, so we checked in to the Ronald McDonald House to help. We stayed today after treatment and have had a lot of fun eating, playing in the play room, going to a nearby park, and now we are just relaxing having snuggle time and watching the Backyardigans. He told me he wasn’t taking a nap today, so he’s struggling right now. Typical 3 year old. Haha. I figure the poor thing gets put to sleep for hours every morning, so why not let him enjoy his day while he has the energy to do so. We are going to stay tonight and maybe tomorrow night and then go home for the weekend. It will be good for him to have nights at home and then stay a couple nights here and there throughout the week to be in his own bed as well as take breaks from the commute. 

We cannot thank you all enough for your continued love and your prayers. Especially through our admission last week and surgery scare. I remember I just kept thinking- he made it through major brain surgery without any complications, without needing a shunt. He has not made it this far to now end up with a shunt. This can’t be happening! So I am beyond grateful to every single prayer lifted up for him because I know that the Lord heard us. Those emergencies and those delays happened for a reason. So that he could use his healing hands and that extra time and help Cade as much as he could in that very moment. Those prayers and pleas for mercy and healing were heard. So thank you, from the bottom of our hearts, thank you!! ❤️