Pinch Me

Last week was Cade’s Make-A-Wish trip to Disney World in Florida. It was the boys first limo ride to the airport. Their first airplane ride, which they both did amazing with. The trip itself was amazing, the treatment they gave you was a once in a lifetime experience. Rylan had an absolute blast. My giant 5 year old got to take full advantage of his height on this trip and through that, he found that he loves roller coasters. He went on so many roller coasters while we were there. Eight to be exact, as he of course kept count. Cade got to go on a few since he’s pretty tall for a 3 year old as well. There was a water ride we went on that he immediately asked if we could go on again, so we did. And go figure the 2nd time he and I got soaked! The one true roller coaster he went on came to a stop as it ended and Chris said he looked at him and said “that was so much fun!!” We were even able to make a day trip to the ocean so that Cade could swim in the ocean like he said he wanted to do. He didn’t lay on his tummy, he wouldn’t go in the ocean unless he was in my arms. The waves were pretty strong that day though, so who could blame him. But we had fun. We went pretty far in and were jumping in to and with the waves. I think overall, he loved it. You ask the boys about the trip and they will tell you they had fun. Me personally, it was not at all the trip that I anticipated and expected it to be. 

A nasty respiratory virus hit our household several weeks back. Cade and I were of course the last to get it the week before we left on our trip, so he and I were both still fighting this cold on the trip. He didn’t feel very good throughout the week. The first few days we were there he got low grade fevers in the evenings. He was fine the day we drove to the ocean. Then Thursday night he and I were walking back to the villa to relax and snuggle. I had said how I didn’t feel good. I was exhausted. He replied to me that he didn’t feel good either. I asked him what didn’t feel good. He replied, “my head hurts.” Naturally this made my heart stop beating. The anxiety instantly filled my veins. We went in to take a shower and get in PJs and he began crying and throwing a fit that he wanted to take a bath instead. As he was crying I noticed suddenly that the right side of his face wasn’t as symmetrical as the left. It wasn’t moving like the left side. This added to my panic, but I tried to reassure myself that maybe it was just b/c he was so tired. Then less than an hour later after he had laid down he began crying that his right ear hurt. This reassured me, as he had been pointing to the right side of his head by his temple as the area that hurt. Instantly I chalked it up to an ear infection. That night was miserable. He woke up intermittently crying that it hurt. His low grade fever was back. I’ve never had to use insurance in another state so I had no clue what to do, where I could go. Especially with our stupid HMO. I tried calling, of course there’s no one to get through to after hours. We decided to just run to the corner and get Tylenol to give to him to try and help him sleep a little and then take him to Urgent Care near by in the morning instead of trying to take him to some ER in the middle of the night. We didn’t feel it was a serious emergency. Friday morning we woke up and he told me his ear didn’t hurt anymore. However, his facial asymmetry was even more prominent and was freaking me out. When we were finally seen at the urgent care center he instantly told us that this looks to be Bells Palsy and can be serious and with Cades history he is sending us to the nearby children’s hospital to be further evaluated and get the treatment he would need in case he needed IV medications, etc. 

We arrived at Nemours Children’s hospital and were instantly taken care of. They ordered a CT scan, but then stopped it just before he did it because the radiologist wanted to do an MRI to spare him the radiation. I knew he had just eaten something an hour prior and this would not be done any time soon. The Dr came back in saying that he needs to be NPO for 6-8 hours for the MRI since he needs sedation for it. I knew this. So he went back to the plan for CT to see if there’s even anything to be concerned about before we sit there for 12 hours going through the MRI process. He came back with smiles and pulled up the report reading to us that it shows no abnormalities in the brain, that it showed congestion throughout the sinuses, and fluid inside and behind his ear. He felt reassured by this that they could now say that the reason for the facial paralysis was from the fluid compressing his facial nerve. They gave him a dose of steroids and started him on extra strength Augmentin for 10 days and sent us on our way. We were so relieved. We didn’t do anything the rest of our time there. Cade felt miserable and all he really cared about doing was swimming in the pool, so we decided to stay around the resort so that he could relax and nap when he needed to. I remember praying that things would be ok the entire time we were in the ER, and later that evening as we were walking to the pool at the resort, a monarch butterfly flew between all of us and I smiled. Then on the drive to the airport Sunday, going 80mph down the highway, I saw another monarch fly by the windshield (Chris is proud of me right now for that one as I usually love to call it a windowshield. We always battle about who is right on that one).  Even running errands Monday as I was getting back in to my car there was a butterfly sitting on the side mirror of the car parked next to mine. Just sitting there. And Ry kept telling me throughout the whole trip how he was seeing white butterflies. This had to be good signs. Everything was ok. He was ok. 

We had his 3 month MRI scan scheduled for April 16, a couple days after we returned. I had talked to his oncology team a couple times throughout everything in FL on that Friday. I figured that since we had his MRI Tuesday we would just talk with them in more detail about the Bell’s palsy and when to anticipate it resolving, etc. We felt like the CT gave us reassurance. I remember having no concern at all about this MRI, the issues were being caused by the fluid around his ear they saw. I trusted that DR at Nemours. It was false hope. Looking back there’s things I wish I would have thought to ask or that I would have demanded he called to speak with our oncologist team and not just suggested it and then agreed with him when he said he’d only call if there was something of concern. Or thought and realized that they never put in an IV so they didn’t do a CT with contrast, just without, which would only pick up something very large and obvious. Nothing small in the soft tissue. I wish my brain was working that day as we sat in the ER. Instead it was consumed with worry and fear. 

We had an appointment later Tuesday afternoon which was good because our oncologist told us he would be able to give us a preliminary report of the MRI so we wouldn’t have to wait for results. When the doctor finally walked in he asked if Cade at least had fun. And then Suzie the nurse took him out to get some juice. Chris said that he knew at that moment something was wrong. I was still oblivious, my mind still being reassured by that stupid CT that said there were no brain abnormalities. Then Dr Knipstein said we have to talk about his MRI, there are some concerns. I don’t remember hearing what he said after that as I was crying and walking away to blow my nose, but I remember hearing him say then that there was also one on his spine. I repeated this loudly in shock back to him as I felt the air leave my body entirely as if I was hyperventilating. I wasn’t, I was just crying that hard. Maybe I was doing both. How was this possible? It’s only been 3 months since he ended treatment. The pathology of his original tumor did not show it to have an aggressive nature. It didn’t make sense. Just as I was about to get him back in to daycare and go back to work full time. Why?! I do remember the brief discussion that I already knew in my heart the second he told us it was back. That this meant the only next step for treatment was radiation. And I remember asking if I was gonna lose my baby. I remember him saying that he wasn’t going to dissect every single slide with us at this time, but that there were many areas and he showed us most, explaining that one is in the right temporal lobe area of the brain which is the reason he is having the facial palsy, not because of the ear infection. Only half of my sweet boy’s beautiful face doesn’t work right now, he can’t smile normal because of a tumor. 

I called my boss from the lobby while waiting for our car and I just broke down to her as I tried to explain what was happening. I was supposed to work the following day. She of course continues to be a phenomenal blessing to me and told me to not even worry about a single thing, just take care of my baby. We called our family and some of our close friends on the drive home to tell them the news. They all new of the scan and were anxiously waiting to hear from us. We cried a lot Tuesday night. Chris poured a drink the second we made it home through the door. I didn’t even want a drink. My body was so exhausted and numb, I just wanted to sleep. I couldn’t even process this all. I laid in bed and just cried. Cried and talked out loud to God that I didn’t understand. Why did you send me the butterflies? I thought that meant everything was going to be ok? How is this happening? This can’t be real, please don’t let it be real! Please tell me there’s another explanation. Once of Cades blankies was in my bed and I just held it close to me as I cried myself to sleep. 

I woke up Wednesday and felt ok. The Dr office was working on getting insurance approval for them to do an LP so that they could look in his spinal fluid for cancer cells. Chris and I kept talking about everything and how it didn’t add up and didn’t feel right in our hearts and guts. This feeling was shared also by two of my best friends who are also nurses. I felt like there had to be something to this. I reached out to the infectious disease doctors I work for and explained it all to them asking what else they would test the spinal fluid for in event that this could be some crazy infection in his brain and spinal fluid. Chris and I had found several stories and I knew of several patients where similar situations were the case. Granted none of them had histories of brain tumors, but it still was something we decided we wanted ruled out. We of course got no answers from insurance on Wednesday. I wanted to rule everything possible out before accepting the answer that this was for sure cancer. Before I accepted that the next move was to blast my 3 year olds beautiful and bright brain and spine with radiation, possibly destroying him in the long term. Long story short, after a long day of phone calls, the LP was approved by the end of the day Thursday. I told the NP everything I wanted to have tested on the spinal fluid in addition to just looking for cancer cells. I explained that she could think I was absolutely crazy or in pure denial, but I just needed it done. I needed to know for sure based on everything else, that this wasn’t a crazy infection causing these lesions and spots. I wouldn’t be able to move forward with radiation without knowing for sure that we looked at every other option and that if the path still pointed in the direction of cancer, then we would move forward at that time. Chris had spent those 2 days on the phone with anyone he could think of, including St Judes. Reasearching other avenues. Every medical expert ended at the same thing- the next step he needs is radiation. St Judes explained to him that there are 3 legs to treatment, radiation being the one we didn’t do, and when they see that one leg not used, they very often see that the medulloblastoma comes back. But we still weren’t convinced. We were so hopeful that it being an infection was our answer. That the doctors were going to be wrong. We prayed so hard for this and called in on all of our prayer warriors to pray hard for a miracle for us. This was the miracle we were hoping for. 

We went in yesterday for the procedure. Of course there was an emergent case which delayed the entire day and put Cade waiting 2 hours past when he was scheduled. This is the story of our life. I swear it always happens to us, despite them saying how it rarely happens. We knew because of this delay that we would probably not get any answers until Monday. We left the hospital finally at 4pm and headed home and straight to daycare to get Ry. As soon as we walked in the building I got a phone call. It was the NP. She wanted to let me know that the cell count looks very normal and is not concerning for infection explaining to me what they would expect to see when an infection is present. She went on to say that the preliminary cultures for fungal and bacterial infections did not show any active infectious cells present, but that they still plated them for growth. She told me they didn’t run anything for viral or PCR panel because it’s highly unlikely given the cell count being normal. I asked her to please do it anyways. I need to see it on paper and know that nothing else is going on. She reluctantly agreed. As I was about to walk out to the car where Chris and the boys were waiting for me, she called me back. She said she went back and forth about calling me back, but chose to call and not wait the entire weekend. She wanted to let me know that the NP who did his spinal tap had just called her. The pathologist called to inform her that in his preliminary start of the cytology to examine the cells of the spinal fluid- he can see tumor cells in the fluid. My heart was beating out of my chest. That’s all I could feel in the moment. We wanted them to be wrong, but they aren’t. They were right. I still demanded that she run the rest of the testing on the fluid just to be sure there is nothing additional going on. There was a lot of silent pauses. I’m pretty sure she wanted to tell me No and to F off. But she didn’t. She irritatingly said ok. And she’s probably right. Nothing will grow out. There is no infection present. But I need to know this. My heart NEEDS to know this for certain to give me any peace with it and be able to put it out of my mind and move forward. 

I told Chris this when we got home. I didn’t want to tell him in the car with the boys. I had no appetite for dinner. Again. The night before I ate a corn dog that Cade decided he didn’t want for dinner. Corn dog and a glass of wine. Dinner of champions. Last night wasn’t any better. My stomach was hungry but my body could have cared less. So I ate a mini bag of popcorn just to have something. We knew this was a high possibility to still be the outcome of everything, but we are still devastated. I’m heartbroken and so sad that this is happening all over again. I sat in bed and tortured myself reading the detailed report of his MRI’s that popped up on his chart. At the time I remember asking how many there were and Dr Knipstein saying that he’d have to look through all the slides because he told us he wasn’t going to point out every single one at that appointment, but that there were 7-8 he could think of off top of his head. According to the report there are 11 spots in his brain and the one spot in his spine. There are 12 tumors in his body and cancer cells still floating around in his spinal fluid waiting to make more. His cancer is back and it is back with vengeance!! We are still mystified, but we aren’t in denial. Now we are scared. Really scared. His cancer is back and it’s aggressive. If there are this many spots, who knows how long it has been back for. Long before the facial paralysis gave us the red flag that something was wrong. Now it’s the weekend and not much can get accomplished until Monday. We should have more answers from the full details of the cytology on Monday and will go from there with the doctors on how quickly we can get all the b.s. of referrals and appointments done to get started at the proton center for radiation. I’m praying that insurance isn’t going to delay things longer than absolutely necessary and that they will be alert to the urgency in starting treatment asap based on how aggressive it is showing itself to be now. I have a good feeling that they are going to force us to go to Lurie’s now too since this is a relapse and no longer part of the trial they approved us to go to CHW for, which is going to suck. 

Please keep Cade and our family in your prayers right now and help us find the strength to start this battle all over again. The boys do not know yet. We figured there is so much we still have to figure out and so many questions that need to be answered. Tomorrow is Easter. We want them to continue to living in normalcy as long as possible. Until we have a definite plan of treatment that we can explain to them when we tell them that Cades tumor is back and this time there is a lot more of them to fight. But have no doubt, we will FIGHT.