The last several days have been quite a whirlwind of emotions. After my last post on Friday, we received a phone call from our pediatrician, Dr Kaufman late that evening. He called to inform us that he had been on the phone with a man from the Advocate branch of my BCBS HMO insurance and was basically told that my insurance will not cover studies/trials. They will cover the consult appointment we had planned for Monday, but they will not cover the trial. This made our Pediatrician so angry. He said he was arguing and going back and forth with this man regarding the situation and how unfair that it is that they cover a consult just to get a patient/family’s hopes up and then don’t cover the recommended or offered treatment at said facility. He felt terrible to have to call and tell us this on top of everything else we are already dealing with. The insurance will, however, cover the standard treatment at Lurie’s. We didn’t know what to think or how to feel when we hung up the phone. Once again, insurance determining the outcomes of our lives and the direction our health care goes. Incredibly frustrating.
Given this new light, we tried to see it for what it was. Maybe it was a sign that we weren’t meant to be part of the trial. Cade was just meant to get the standard treatment of the 3 and 3. We then began to almost convince ourselves that maybe the trial wasn’t a good idea after all. What if he were randomly selected to get just the 1 dose of heavy chemo and it proved not to be enough. We were trying to find a reason for the situation to make the best of the cards we were now given. We both decided that going to the consult, since it was covered, couldn’t hurt. At best, it would essentially be a 3rd opinion talking to another doctor and getting possibly new or more information and perspective on our new world. Monday we traveled down to Children’s of Milwaukee and met with Dr Knipstein in the MACC Fund clinic. He went over the beginning of the trial, which they refer to as the “Induction Phase” discussing every medication Cade would receive, the most commonly seen and expected side effects, the serious and rare things that are always a possibility of happening, etc. He was a very knowledgeable doctor. We had a lot of questions, which he felt were great questions, and he had in depth answers for everything, which was helpful. We also learned that the 1 heavy dose is actually an even heavier dose than the 3 heavy doses standardly used. At the end of our very long appointment, he asked us how we felt about being part of the trial. We explained how we had been told by Dr Kaufman that our insurance is most likely not going to cover it. Dr Knipstein went on to say that that wasn’t exactly true. He said it’s an out of network issue and the insurance has to decide if they’re willing to cover the entire treatment out of network, or if they will make us go to Lurie’s for in network treatment that is available. He said he would be submitting the consult note along with the signed contract for the trial to the insurance that same evening for them to review first thing Tuesday morning and telling the insurance that they HAVE to give an answer by end of the day Tuesday, period. He said we had to sign the contract in order for it all to be submitted to insurance, but that we were not bound to anything. We were still able to discuss it and think it over and they would call us by the end of Tuesday to inform us of the insurances decision and if we chose not to do the trial, we would not be obligated to participate.
We left the appointment and drove home in shock and debate. What was the best thing to do? What if the one dose wasn’t enough? What if we went with the standard treatment of 3 high doses from the start and the 3 doses was incredibly hard on his body and we had a lot of bad outcomes from it? What was the right answer? What was the best path to take for Cade? We were both stuck solid at this fork in the road, unsure of which path to take. Did we want treatment at Milwaukee or Chicago? Which place did we have a better feel about? What were the pros and cons. We loved Dr Lulla, but that was irrelevant as he told us he was leaving the practice this week. So did we just love Chicago that much more because we loved Dr Lulla? The questions were just flying around our heads. I felt like a deer in headlights. Just dazed and emotionally overwhelmed. It came down to the insurance. We knew that much. So we kind of decided we would just put it in the hands of the insurance. If by some miracle they choose to approve it then we would take that as a sign that it was meant to be. If they denied it, then we are off to start at Lurie’s on 7/17. I didn’t know how to make anything more of it than that. In a way, it was out of our hands still when it really came down to it. Plus, we both knew there was no way the insurance would approve to do this entire treatment out of network.
Chris went out for a little bit to process it all after we got home that night. Ry was having a sleepover at grandmas house. I spent the evening reading, singing, and snuggling Cade. Our little bedtime routine. He ended up throwing up after about 30 min of lying down, which put me on edge. He finally fell asleep at 9pm and I crawled in to bed with the plan to read my book and just disconnect. Instead I found myself on FB on the parents of medulloblastoma kids site. I was looking for a post Chris was telling me about regarding the headstart 4 trial, but instead everything I was finding was negative and heartbreaking. Posts about kids relapsing and kids recently passing. I couldn’t. I turned my phone off and cried. I turned to a book my grandmother had given me of bible verses for anything you’re feeling. I looked up the section about anxiety and read it. I then turned to the section about fear and read it, and I felt so much better. I prayed hard about everything that night. Prayed to God to please give me a sign. To help me know what’s the best thing to do. Prayed for him to please not take my baby from me.
Yesterday I woke up and didn’t feel like there were any strong signs. No dreams. No whispers of what decision to make after I awoke. Nothing. We had another appointment and then an unexpected venture to a second appointment which together consumed our day. We did not expect this at all! While we were at the second appointment I got a phone call from our Pediatrician’s office. The nurse was informing me that the referral was all set for the MRI tomorrow. This had been tentatively scheduled on Friday because there’s a list of things that has to be done in order for him to start with the study on Monday 7/16. I was confused. Why are they covering the MRI in WI? Then she continued on to tell me that the insurance APPROVED the trial!!!! What?! They chose to cover it? I was speechless. Nauseas. All I could reply to her was “you’re kidding me!!??” I had a hard time concentrating the rest of the appointment. I was very anxious. Not a familiar feeling I have to say. My heart goes out to those of you who suffer with anxiety on a daily basis. We got in the car and I think were both in total shock. I’ll be honest. I was freaking out. I didn’t know what to do. What to think. Which choice was the right choice? On the ride home Dr Knipstein called us. He talked to us a great deal, explaining the insurance and how it was still being worked on because they are contracted with Milwaukee Children’s already, so all inpatient treatment is covered, but they are obviously contracted with Advocate for out patient. So they will have to make a single contract special for Cade to cover essentially all of the out-patient studies and needs that will have to take place out of network. He’s hoping to have this done in the next day or so. We asked if God forbid, Cade ever needed surgery again for any reason, would we be bound to use their neurosurgeons, or could we stay with Dr Ruge. We had both agreed that this would have been an instant deal breaker for us. He said we absolutely could use Dr Ruge. Our next call was from Dr Kaufman, who as always, was wonderful. He gives us great perspectives and always puts our minds at such ease. Talking to both of these doctors left Chris and I both feeling much better. We feel like we asked for a sign, and this was our sign. The insurance is going to cover the trial. We absolutely did not anticipate this. God was directing our path for us and must feel that Cade should be part of the Headstart 4 study. We both still believe that God will continue to direct and protect Cade and if in the end, he gets the 3 treatments anyways, then that’s how it was meant to be. But if he does by some chance get the one, great. If he can be spared the 2 treatments, then why not give him that chance. We both agreed that we are going to do the study at Milwaukee Children’s.
Now I sit in New Berlin, WI. Cade is currently getting his follow up MRI of the brain and the spine. They’re doing a more in depth one of the spine for better imaging. It’s always hard to see your babies scared or in pain. And Cade is no dummy. Whenever he’s told we are going to the doctor…which is A LOT lately…his first question is with teary eyes “is there gonna be pokes?” So when the nurses walked in with the IV tray, he tucked in to me and started crying. Thankfully they got him on the first try and gave him versed right away. He calmed down and they carried him off to get him started. We are at a satellite site, which I was not thrilled about because he has always been intubated for prior imaging mainly due to aspiration risk from vomiting. They felt he was safe to do here under a more moderate sedation. Well they came to inform me that they have used their max amount of Nebutol with him and that they have 2 doses of versed left that they can use. If it’s not enough to keep him still and asleep, then they may not be able to complete the imaging here. He’s just burning through the medication to fast and they unfortunately do not have an anesthesiologist on site here to give him propofol for better sedation. So we will be up a creek, if you catch my drift. Going forward, knowing this, he will have to get all future scans at the main hospital with an anesthesiologist. I guess we’ve said all along that this little child is strong!! Haha. I’m just crossing my fingers hoping that it will all finally set in and he’ll just sleep and be still long enough for them to complete everything. Please! On the drive up here I found myself freaking out a little bit. What if the spinal MRI finds something that the one at Lutheran missed?! I’m praying. PRAYING. That it does not. I’m also praying that there is nothing new on the brain one as Cade is still struggling with vomiting 1-2 times a day. It had been happening the last several times with lying down for nap or bedtime, which was making me slightly anxious. I called Dr Ruge who wasn’t overly concerned based on my answers to his questions, but glad to learn we would be getting the imaging done today so we would be able to see as well to make sure. It will put my mind at ease to hopefully know that it is still just from the shifting and adjusting of the brain from the surgery, and not because fluid is building back up. Or God forbid, the tumor is growing back. 🙏🏼 🙏🏼 🙏🏼
So now we wait. We wait and hope the scans all are able to be completed. We wait to hopefully know results tonight after Dr Knipstein reviews it, otherwise within 24 hours. We wait to hear what the insurance has to say about costs once they figure out this out of network contract. Then we wait to see how probable it will be to get everything else done in the next couple of days that needs to be done in order for him to begin the chemotherapy on Monday. Dr Knipstein mentioned the possible need to admit him early in order to complete everything if it looks like it’s going to be a problem to get done out patient. We are really hoping that it will not come to this as we were really looking forward to one last weekend home together as a family before the chemo treatments begin Monday. Wish us luck! ❤️ ❤️ 🤞 🤞
Our Warrior Journey 