We are officially admitted for round 1 of Cade’s heavy dose chemo. This did not look to be possible yesterday afternoon. I called to follow up late morning and was told by one of the case workers that the hospital admission was approved, but it was unclear as to whether the chemo and stem cell transplant were approved yet or not. They were clarifying some things and would call me back. That afternoon I received a call from the director of the BMT team himself, Dr Margolis. I knew that could not be a good sign. He told me that things did not look promising and he wished he had better news. He was told by insurance that the request has to now come from his Pediatrician stating that they approve this treatment. Once the insurance received that request in writing, they would then have ANOTHER 4 full business days to approve the treatment. I was livid. Dr Margolis was as well. He said at this point, who is advocating for Cade? He needs this treatment and someone has to advocate to the insurance for him. This is usually best done by the parents and the pediatrician. He advised me to get through to whoever I could and tell them that the approval needs to be done as fast as humanly possible so that the cancer does not spread. NOT in 4 more business days. Because at that point we would be looking at middle to end of next week before we would even hear their response. Starting treatment even later. This was unacceptable.
I spent the next few hours on the phone. I was on a time crunch as it was 1:30 and end of business day for many is 4 or 5pm. I called Dr Kaufman’s office first and spoke to one of the nurses who I was almost in tears with by the end of my plea to her explaining my frustration, my disapproval of this whole process, of the insurance, etc. That this is absolutely unacceptable, this is a 3 year old with cancer we are talking about, what kind of heartless people work on the insurance’s end, and I am about to freak out! Poor girl. I told her Dr Margolis advised me that Dr Kaufman should call the insurance directly about just how unacceptable this is. She told me that they had faxed the letter to a woman named Cindy Mitchell who handles the transplant referrals. Being that these rounds require the stem cell transplants, it changes insurance coding as well as style of referrals. She couldn’t give me her number, just a generic number to Advocate Good Shepard. She instead gave me a patient line number for all issues. I started there. The woman I spoke to said that it was approved and she had a referral number. We went round and round. I was pretty sure what she was referring to that was approved was just the general admission. She wasn’t understanding what I was needing, just kept telling me the auth is approved so everything is all set. I text Dr Margolis this information as he had given me his personal cell and asked that if I got ahold of any names/numbers to get them to him and he would call on Cades behalf as well. I tried to get through to BCBS, unsuccessfully when I got a call from one of the directors from our pediatricians office telling me that she spoke to Cynthia and as of 2:30pm everything was approved. I managed to hunt down the number to this Cynthia woman. I called and spoke to her and she told me everything was approved and she was sending confirmation to everyone who needed to know. I then got a call back from the BMT case manager and told her this. She called to verify and called me right back and then I finally got a call from the oncology team confirming that Cade was to be at clinic Friday morning at 8:30am with kidney function test at 9:30 and admission to the unit after that for chemotherapy to begin Saturday. I finally hung up the phone with a sigh of relief at 4:30pm. I needed some Advil and about a gallon of wine STAT! Dr Margolis was the last to call stating he’s the last to know anything and applauded me and my pediatrician for whatever we did today because he feels it was because of our advocacy that this approval happened so quickly.
I got us all packed up while the boys had a movie night with our sweet neighbor girls that they adore. Then I spent the rest of the night relaxing and drinking a bottle of wine with my hubby. One more night together on the couch before I return to the hospital for the next 3-4 weeks straight. The morning was filled with precious hugs and kisses on Cades head from Rylan as he said goodbye. He is such a strong boy and is tolerating this so incredibly. Or at least seems to be. Chris packed up my car and we pulled out of the driveway at 7:15 yelling goodbye’s out the car window. The day went good. His central line dressing change was the most tearful it has ever been. I think he was very tired at that point, which didn’t help matters. So that was heartbreaking. His kidney function test went good. He sat on the table for the pictures all by himself this time like such a big boy! He funny enough was excited and anxious to get his room, asking if we got to go see Miss Brooke yet, and telling me it was taking to long. I told him I wasn’t even sure if Miss Brooke was here today, she could be off. He said no, she’s here. And of course, luckily for him, she was. Along with a few of his other familiar favorite faces. The nurses are so wonderful here, they make coming back for him something he seems to look forward to. Which is sad, but great at the same time. It could be the opposite. He could be terrified to come back here and that would make this all even more awful than it already is. So I’m grateful for that piece of our journey.
His lab work looked good so he didn’t need a blood transfusion after all. His hemoglobin levels actually increased. He is getting the IVIG infusion right now to boost up his IgG levels. It will run over 8 hours in to the night. He settled in to our room well. Another new room we haven’t been in before, but it’s a good one. It has a perfect view, front and center, of the helicopter landing pad and he loves it. Tomorrow morning chemo will begin. I’m praying he will tolerate these heavy dose rounds just as incredibly and resiliantly as he did the standard dose rounds. Most important thing is that we are here. We are finally done with the insurance battle and are beginning his heavy dose chemo. Thank you God, and please continue to protect my sweet boy throughout this next phase. Prayer warriors, please continue to keep Cade close to your heart and in your prayers that he continues to fight like the incredibly strong boy he is. On that note, that reminds me that the woman from the desk at clinic walked in to our room today and handed Cade a gift. They had one more left for a special boy she said, and she handed him a super hero cape with a little light up badge which she had already put batteries in that velcro’s to the cape. How fitting for our super Cade ♥️ 🙏🏼
Our Warrior Journey 