Thursday went good. I had a calm feeling of peace with me all day. I knew God was with me. Cade had all of the tests and scans done and the feeding tube placed and everything went great. The feeding tube was a little more obnoxious looking than I was expecting. They put in a NJ tube, which means it actually goes just past the stomach and in to the jeuodenum of the intestines. They did this because he continues to throw up and they don’t want him to throw up and have the tube come out and need to be replaced multiple times. Also because of this, they did what they call a bridal. So they tie it with a string around the septum of his nose to keep it very secure. I invisioned just a tie, but there’s actually a fairly large plastic piece that is involved with it that the tie is part of and sits right at his nostril/upper lip. Also the way they taped it on his cheek had the tub bowing out a good couple of inches in the way of his mouth so every time he’d try and eat or drink the tube was in his way. Why on earth it took me an entire day to re-adjust it and retape it myself is beyond me! But when I finally did, it was so much better! It was out of his way and more flush with his cheek. Now he looks even more adorable with it and the cute little animal critter stickers they gave us to use on his cheek ❤️ He was not happy with it that day when he woke up. Naturally. And he was so funny because he kept telling me how much it was gonna hurt when they took it out. I kept saying he was gonna have it in for a while so lets not worry about that right now. I don’t think he understood because he continued to ask. Then when it was time to leave he said to the nurse “you have to take this tube out first” and I said it was gonna stay for a while. He cried “why” and I explained that it was just like his chest ones. He didn’t do anything wrong at all. It was just another tube we needed for a while. He excitedly said “well then lets get outta here!” Haha. We were in the car and home by 5pm. As if being home wasn’t surprise enough, Cade got another great surprise that evening. He cheated and saw it out the window before we even had the chance to bring him out back. He squealed with laughter and excitement. Another incredible organization, Bear Necessities, gives kids a generous gift in the form of a “Bear Hug” and for Cade, since he is restricted to home and loves to be outside, they got him a brand new play set for his back yard. So amazing! Thank you so much Bear Necessities!
We patiently waited for results all of Thursday expecting we wouldn’t hear anything until Friday. But as 11am came and went on Friday still with no phone call, I was starting to get impatient. Our doctor, Dr Knipstein, is now on paternity leave but had told us to call his nurse Suzie if we hadn’t heard anything by Friday. So that is just what I did. I expected Suzie to take a message and have to have one of the covering doctors call me back with the results. Instead she seemed surprised that no one had called us yet and said she had the report right there and began to read it to us. She said everything in the brain looks good. There were a couple areas noted on prior scans of the brain relating to the hydrocephalus that were now completely resolved. Other areas relating to the surgery and the shifting of the brain as result of surgery were also looking better compared to previous scans and some areas of expected scar tissue from surgery were noted. She also said that the small spot that was the residual tumor we knew was left behind by Dr Ruge, is now GONE!
She continued on with the results of the spine MRI and as she read the report it stated that there was an area on the spine at C5-C6 that cannot be completely ruled out as artifact or blood vessel vs. metastasis. This is when I almost had a heart attack. I think I actually felt my heart stop. Was she telling us that the tumor possibly has spread to a small spot of the spine?! This is not happening. I felt my body get a little bit weak. Then she went in to more detail about that exact piece of the scan explaining to us that they have had 4 different doctors, including their neurosurgeon, review the pictures and they all agree that it is not tumor, it is just a blood vessel. I looked at Chris and saw the relief in his tear filled eyes. This was good news, I knew that, but why didn’t I feel elated? Why weren’t happy tears falling down my cheeks?
Suzie called back a few hours later to inform me that they had sent everything to the national headquarters for the trial. I told her that I don’t know why I didn’t feel relieved. She told me no, this is good. The scans are all good. We as nurses know that there can be different things that highlight on CT and MRI’s for different reasons that didn’t highlight that way before. A specific spot that the picture took at this precise angle and it was slightly different than the way the picture took that area on previous scans. And that reports have to state everything for legal purposes, and that’s why it read out as it did stating unable to rule out blood vessel vs. metastasis. But she assured me that 4 doctors looked at them and ALL 4 doctors agree that it is not metastasis. It is not tumor. I thanked her and said ok, I feel better. At a later point Chris and I continued to talk about it and he said it must have been when I walked away to find Dr Ruge’s numbers (because I wanted everything sent to him for review as well) that he had asked Suzie if this is what Dr Knipstein was hoping to see on the scans. She had told him yes. The MRI results are exactly what our team of doctors would want to see at this stage in his treatment. Whooo hooo!
Now we just have to wait for Nationals to review. This is the next step. Even though our doctors reviewed everything, it still has to go to nationals and be reviewed by their own board in order to determine what they say is the next step in treatment. Our team is praying that they will see that 4 different doctors, including a neurosurgeon, have already reviewed and agreed that the scans are all clean and that they will not determine a differing opinion on that one spot of the spine. If they are in agreement that the scans look good and show, what they call a “complete response”, then we move forward with the trial and Cade then gets randomly selected by computer to either get the 1 extra heavy dose or the 3 heavy doses of the next conduction phase of chemotherapy. They have to give an answer in 24 hours. But of course since it was a Friday, we now wait until Monday to hear back. Once we know what the next step is, then we can get everything submitted to my insurance to approve the next phase. Always a game with insurance. Hopefully they will get it all finalized and approved by the end of next week as the doctors are hoping to start his heavy dose round(s) on Monday, September 24. If not, then by October 1st. That would be the absolute latest he could start per the trial and treatment regulations. The bright side of this, is that we get to be home until the start date. Home for over a week!! Again Cade laughs his giddy laughs of excitement when I tell him this.
So we have had some amazing news this week. Follow up MRI’s look good!!! Thank you God! All of his CT scans were normal as well. An added piece of amazing news we got back this week was the genetics test results. They sent off a bunch of blood work on Cade to see if he had some other disorders that medulloblastoma can be a result from or to see if it was something linked to his genes that he could have been given from Chris, myself, or the combination of our genes. As I mentioned way back in the beginning, both Chris and his sister had brain tumors. Chris’ sister having the same one as Cades. They both were diagnosed at the age of 8. No, they are not twins. We had seen a genetic doctor prior to having kids to determine if this was a genetic thing that could be passed along to our children. That doctor ran some basic tests that came back negative. You can imagine that the news of Cades tumor came as a complete shock to us, not to mention raised red flags to every doctor who saw him with this type of family history. Our biggest concern was, as time goes on they learn more, so as that testing was 5 years ago, there were new markers they were testing that weren’t tested on Chris before. So this could still be genetic. If this was genetic on our part, then our bigger concern was Rylan. Would this undoubtedly happen to Rylan as well. Did he already possibly have something? Every time Rylan trips or falls my breath catches in my throat. I have been praying every night that Cades tumor is just another fluke. Freak of a fluke at that. But please Lord, let it be a fluke. Please do not let it be something that my baby Rylan can get too. Well God answered another prayer for us. The doctors told us that the genetics tests were all negative. Hallelujah! When Chris told me this I was in the middle of checking out at Old Navy and I started crying. Then I had to explain to Rylan that they were happy tears. I told Chris thats all I keep praying for is for this to just be some absolutely unrelated freak thing. And that’s what it is. It is one crazy coincidence to add to this jaw dropping family history we now have. But in my opinion, that’s great news.
Thank you God. Thank you prayer warriors! ❤️
Our Warrior Journey 