The same Friday that we were driving home from having the LP done I was talking to God. I was talking quietly to myself so that Chris and Cade didn’t have to listen to me. I remember talking to him and begging for there to be a red flag. I wanted so much for there to be some sort of red flag in the spinal fluid that they would see that pointed to something else as the reason. I was asking him to please give me a sign, please God let there be a red flag. Then I suddenly noticed what looked like a red sock in the middle of the lane next to me as I drove 70 down the highway. I thought, hmmm. Thats weird, a red sock on the road. I returned my focus to God and continued to talk to him asking him to protect us, stay with us, help us through, and to keep showing himself and signs to me. As I’m doing this, shortly after seeing the sock, I noticed a long red rope or plastic tape of some sort in the ditch between the 2 highways. I looked up and laughed a little. Is this you? Are you trying to give me a sign? That there is a red flag? At that moment I looked back to the road and a cherry red sports car drove past me in the opposite way across the ditch on the other side of the highway. I had not seen a bright red car the entire drive there or back up until now. It’s not exactly a popular car color around here. God was hearing me. He was showing me red flags. I laughed and told Chris. As we learned though, it wasn’t the red flag I had hoped for. But God wasn’t wrong, there was definitely a red flag, and that was the fact that there were cancer cells visible in the spinal fluid. Confirmation to us that this is in fact the cancer without question and that it is metastatic. It’s time to focus on our plan of action. To prepare for war.
Many people have said to me since the last update, that they believe the butterflies are still a sign that God is with us and protecting us. A sweet woman I don’t even know sent me a message sharing with me that a mutual friend shared our story and after she had read it she saw a ton of monarchs, and she had sent me a beautiful picture of them on a rock outside. Even on Easter I was sitting outside with the boys enjoying the beautiful weather when a big monarch butterfly flew past me up towards our roof. A while later, Rylan said to me that he just saw one of the butterflies I love. I asked him what it looked like and he described all the features of the monarch. Easter I debated about going to church. I wanted to join my family, but I just felt like I would be a basket case through the whole sermon so I had just decided to stay home with my boys. My sister sent me a text afterwards saying she was glad I chose not to go because I would have lost it, but she wanted to share something that the pastor had said. “The storm is not God. It is our broken world where bad things happen to good people. God will walk with you through the storm.” All of these signs, including the red flag signs, they are all God letting us know that he is with us and he is walking by our side through this storm. I know that in my heart. It doesn’t make it any easier or help me to cry any less, but I do know that he is with us holding us close, helping us fight forward.
Last week was trying. The first few days were spent waiting and calling and trying to figure out what was going on. It was incredibly frustrating and by Wednesday I kind of took my frustration out on Carrie who is the NP of our team at CHW. I told her I felt like no one was fighting for him and we weren’t getting any answers and it made no sense that things had to be done this way. To explain that last part a little more- there are 2 types of radiation. Proton and photon. When radiation is delivered it scatters beyond the point of intended delivery, causing the array of long term side effects from damage to other, unintended areas. Proton delivers the radiation in a different way and it doesn’t scatter as much across the body with the goal and hope of reducing those long term side effects. Chris and I wanted to do proton to spare Cade anything we possibly could. Monday, Carrie spoke to the proton center and learned that their “system” is that they require Lurie Childrens tumor board, and only them, to review neuro-oncology cases and then if they recommend Proton treatment then they refer the case to their Proton center and the center then moves forward from there. It doesn’t matter that OUR team at CHW has their own tumor board that they do, their opinion apparently means nothing. The recommendation HAS to come from Lurie’s. The amount of records they need in order to do so is excessive and their tumor board meets once a week on Tuesday afternoons. So needless to say Cade’s case was not part of their meeting last Tuesday. Which meant we have been sitting here and twiddling our thumbs for an entire week waiting for their stupid meeting tomorrow, on Tuesday. It was infuriating to say the least. Not to mention the frustration already stemming from the insurance side of things. It was a very frustrating week for all of us- our oncology group, our pediatrician, etc. Carrie explained to me Wednesday that she felt like she was in a corner with this proton center (which is the only one in IL by the way) and that no matter what she does, she is stuck by the way they do their system and can’t get around their rules. So there we all sat Wednesday. Stuck in a corner, unable to move forward with anything. I was talking with a dear friend that week about it all saying that God needs to help us move mountains, and that I meant that literally. I was going to need to move mountains to get anywhere with things. She replied back to me that as she read that, she was literally driving through the mountains. And had a shirt on that said Only You Can Move the Mountains. I couldn’t help but smile at that.
By the end of the week, I knew that the Lord was truly trying to move mountains for us and he was able to move a big one. It didn’t change our immediate situation with the Proton Center, but it at least allowed us to continue to follow our care with our team in WI. Friday we went to clinic and met with Cade’s oncologist, Dr Knipstein who doesn’t have clinic on Fridays, but spent 2 hours talking with us about everything. My incredible mom changed her schedule in order to come with us Friday because they wanted to see Cade, but since we still haven’t told the boys, we didn’t want them sitting in the room hearing all about treatment options and outcomes, etc. So Knipstein saw Cade, made him laugh, checked him over, and then off he went to play around the hospital with my mom and Rylan. Afterwards we took advantage of the nice day and went to the Zoo for a couple hours. During our discussion we talked about treatment. Overall between everyone Chris had talked to- St Judes, Dr Anderson in Texas, a group in NY- they all stated that after reviewing his records, they agree with our doctors and the treatment plan they propose. Radiation is inevitably the only next step. We discussed with Knipstein in a great deal the difference between Proton and Photon in Cade’s case. The bottom line is that when speaking about full cranial spinal radiation, proton is not going to spare him much when it comes to long term side effects. His entire brain and entire spine will need radiation. The fullest amount of radiation. 36 Grey is what they call it. Grey is the therapeutic measurement for cancer. He would need full radiation to cranial and spinal areas and then he would get “boost” doses to the areas with the largest tumors. He showed us on the MRI slides again that the largest one is residing in his right temporal lobe area and it is close to another, whether they’re combined somehow is unseen, but they are neighbors and the second is on his cranial nerve that is responsible for his facial movement. Both of these tumors in this area are causing his facial palsy on the right. Whether we can get them smaller and lessen the pressure on this area soon enough to allow his face to return to it’s normal, beautiful, functioning state is unknown. It is possible that if the nerve has been damaged to much, the facial paralysis could be permanent. This area will also be where he will get boost doses and due to this spot having to be hit the hardest in both forms, he is certain that Cade will lose his hearing in his right ear. There is another tumor on the left temporal lobe so he will likely lose hearing in his left ear as well and will require hearing aides. He went through all of the other long term effects with us in detail. Cognitively we won’t see the true result for about 5 years or so down the road, but that we can expect the radiation to result in 30-40 points less than what he would have been IQ wise as the radiation boost areas will effect the learning center of the brain. His attention span and ability to process and retain new information will be effected. Due to full brain radiation it will effect every center that our brain communicates to our bodies for like the growth center, thyroid, sex hormones, cortisol, adrenal glands. Everything. The full spinal radiation will effect his bone growth, so while his arms and legs will continue to grow normally, his torso will be unable to, due to the damage of the radiation, so he will be much shorter than he would have naturally been. The radiation scatter will also go through the torso, which as we all know is home to all of our organs basically. Praying that he never develops any secondary issues or insult to his heart, lungs, or GI system from this. The even scarier part is that radiation in general can cause secondary malignancies. It leaves the risk that it could cause normal tissue to become abnormal causing things like a glioblastoma or a glioma in the brain down the road just from having radiation. The occurrence of this is <5% but the risk still haunts.
Radiation will be done 5 days a week, M-F, for 6 weeks. Dr Knipstein went on to say that following radiation, they would repeat his MRI’s 4-6 weeks after the radiation is finished. Based on how the scans look they would determine what would be needed for the next line of treatment. Either way, he feels he will need chemotherapy again. In a different nature. Not quite like we did the first time around with the extensive inpatient stays. The 2 types of plans he discussed both involved him receiving Chemo over the course of a year and involved about 5 different types of medications. Interchanging with each other every few weeks in order to prevent the cancer cells from adapting and overcoming the medications purpose of killing the cancer cells off. The treatments still sound like a lot of back and forth to the hospitals to receive chemo in IV form or possibly through what they call an Omeya reservoir which would be like another port placed in his head in order to deliver chemo directly in to his brain. I didn’t absorb a ton of this aside from the fact that it was terrifying and overwhelming. And that some kids were able to lead pretty functioning lives going to school or daycare throughout treatment depending how well they tolerated it. All I could think in that moment, was am I ever going to be able to go back to work?! Why is this happening? How is this the best we can do for these sweet precious children? These treatments, these detrimental effects. This is the best we can do to help our kids beat this beast that is cancer?!! And that circled back to anger at the American cancer society for only allocating 4% of their funding towards childhood cancer research. It’s repulsive. These children are the future of our world! They deserve MORE than 4%. They deserve more than a treatment option that fries their brains and bodies and destroys the potential that they had to offer to our world. It is absolutely heartbreaking to say the least.
Thursday night Chris and I had been messaging with a few people that had reached out to us with similar stories of their children who were the same age as Cade and both had relapsed. Their stories were shattering. The one woman said her sons cancer came back before they had even completed the original treatment. They had to wait 2 weeks or so on the proton center as well and by the time all the “mapping” was done in order to begin treatments, her son made it through only one treatment before they lost him. Learning this just made me even more frustrated with the system of the Proton center and left Chris and I with food for thought going in to our appointment Friday. Would Proton therapy spare him enough in the long term to make the wait worth the risk. We have no idea how fast this beast is growing. Is it just sitting there? Or is it spreading by the day, or by the minute, while we wait? Chris said to me Friday morning that he isn’t sure he wants to wait for Proton. He would rather have Cade be more delayed if it meant he was still here with us. So this was what we heavily weighed and discussed with Dr Knipstein on Friday. He said several times that by no means is he talking down on proton therapy, it was developed with good intentions and purpose. But he didn’t believe that in the case of full cranial/spinal radiation, that there was much difference between the two long term. He recently had his first baby, so I asked him the unfair question. What if this was your daughter? What if you were in our shoes and she was 3 and this was happening to her. What would you do? Would you try and spare her what you could? He looked me in the eye and said without question, he would start immediately. He would not wait. This cancer is a beast when it returns. Which we knew that much. But when you hear it out loud, it’s scary. It’s scary to hear or read the statistics of survival and success rates. It’s terrifying actually. We left there with pits in our stomachs and the decision that we weren’t willing to risk the wait. Especially if him starting at the proton center wouldn’t be for 3 more weeks, possibly more. We decided to take action, as hard of a decision as that was. Knowing the extensive treatment plan ahead, we also knew the best thing for him was to get a port placed. No sooner than it took for us to get to the zoo, I got a phone call from scheduling that they can place his port this Wednesday afternoon. The radiologist will meet with us at some point this same day and see how fast we can get the simulation and plan made in order to start treatments. Their hope is that they could start him next Monday.
We enjoyed the rest of our weekend as best we could. Friday night we celebrated my nephew’s birthday with the family. Saturday we went to Medieval Times with one of our favorite organizations- Kisses for Keagan. It was the first time for all of us and it was a lot of fun. Cade of course had the typical attention span of a 3 year old and asked about 5 times if it was over yet. Rylan was supposed to have his first Tball game Sunday, but that got canceled due to the lovely snow. Because it’s totally normal in IL to have a flipping snow storm a few days shy of MAY. We still haven’t told the boys, but we will be telling them today. We decided to just let them have the weekend without this weighing on them and tell them only once it was necessary. I felt that since his port placement was set for Wed, that we had to tell them tonight. So that is our plan. I’m dreading it. Especially as Rylan asked me today at breakfast, “once Cade is all better, can we go back to drinking cows milk instead of Fairlife milk?” I think I am more concerned about how Rylan is going to take the news over Cade. I know I am. I feel like this is going to hit him harder. I talked to God a lot through the weekend. Through my long prayers at night when Chris is already asleep next to me. I woke up today and even knowing that we made the choice to go the route of traditional radiation, I still felt the need to call the nurse in the proton center and give her a little piece of my mind. I told her that their system is ridiculous and it is beyond frustrating. Anything she had to say back to me as the reasoning, I had something to say right back. I told her that OUR hospital in WI has THEIR OWN tumor board as well that should be fully capable of giving their opinion. That St Jude, MD Anderson, and everyone else who has seen his records agree with this same plan of action. That I didn’t understand why the be all end all sits with Lurie’s. One of her things she said was his consult is to get clearance to be sedated because of his age. I said he has been sedated a bajillion (no clue how that’s spelt) times why does he need “clearance” for that. That the fact that their process takes weeks is ludicrous. Kids have metastatic disease that is spreading by the minute and trying to kill them and it’s absolutely repulsive that they take so long getting things started and went on to say to her that I quite frankly didn’t even know how she could stand it, how she’s not disgusted with it all. She tried giving me some more of her defense and I basically told her I wanted to let her know that as terrified as we are about doing photon, we aren’t willing to wait and risk him not being here due to their system. I let her know that his port placement is scheduled for Wednesday and their hope is to start him by Monday. Suddenly she said she would have to speak to the insurance coordinator and doctor and would call me back by the end of the day. Now whether or not this will make a difference in our treatment plan and they will miraculously get him started just as fast, or if it will just simply leave me feeling better that I let her know how I really felt. Who knows. I do feel a little better though. Maybe God is still helping me to move mountains.
Thank you all for your kind, heartfelt messages. Your phone calls. Your texts. The gifts, donations, dinners. Everything. It means so much to us and we can’t thank you enough. Most importantly, thank you for your PRAYERS. That is what fills our hearts the most. Knowing that Cade and our family have so many people rallying behind us. Holding us up. Your prayers are all helping in one way or another, so please, please continue to pray to him. Continue to pray for Cade. Chris and I had said over the weekend that all we can do now is pray that GOD and all of his magical healing powers and angels and the CBD oil we give him can hopefully protect every healthy cell possible in his sweet little body. That God can somehow in some way, protect him from all of that horrifying damage. That he can help my sweet boy be a medical miracle in the years to come and prove all these medical statistics wrong. Please Lord. Protect my boy. 🙏🏼 🙏🏼
Our Warrior Journey 