Great news to report- yesterday he made it through the scans and they were able to complete everything!! I saw 2 sets of feet walking towards our room and I though, oh no! But the second set of feet was carrying Cade in as they told me that they were able to get everything done. He began to move his feet at the very end of the brain MRI, however, she had his head snug enough that it didn’t effect anything. Thanks goodness! She said they had a half of a dose left of versed that they could have used and then he would have been maxed out on everything. Just barley got through. Her goal was to allow him to sleep 1 hour if possible to sleep some of the sedation off, but if he woke on his own then he did. Well he slept. And slept. It was nice that they were slow though and I wasn’t pressed for time, so the nurse and I decided to let him sleep extra since we could and it would only make him feel better and lessen his side effects of nausea and vomiting, which we’ve had plenty of at this point. As we were gonna wake him up, he stirred and opened his eyes on his own. She let me know that he was going to be very unstable and have difficulty walking and holding his head up the rest of the night. Low stimulation, rest, and lots of fluids would help the medication to wear off sooner. She also said he will think he can do more than he can and that he can be very irritable. Oh was this true! He was hilarious though. His first comments were “I really like this bed” and “mom can I have a bar now!?” As I was explaining that he had to be careful with his head because he cant hold it up well, he proceeded to sit up real tall and hold his head up while saying to me “like this mom?” And then he tipped over. Haha. We made it home through a long ride of sass and crying like a cat. Once we were home it was like taking care of a very drunk toddler. It was a long night. But we were in bed around 8 and we had no vomiting at all, which was great.
Even better news, Dr Knipstein called and left me a message last night that he viewed the scans and everything looked good. He didn’t see anything in the spine and he saw just some residual tumor in the brain, which is likely what Dr Ruge had left behind on the brain stem. He did not see anything new present. Such a relief!! Now the lumbar puncture will be our last check to make sure that there are no sneaky cancer cells present in his spinal fluid and praying that is also negative, then we can breath a definite sigh of relief! 🙏🏼 🙏🏼
Things are moving along with the study as well. Dr Knipsteins nurse called us yesterday letting us know we were scheduled for the last 2 tests Thursday (today) and then we will go to their office Monday morning to meet with them, he will then go to the OR at 2pm to have his LP done and his line placed, and from there he will be admitted and start day 1 of our 1st cycle of the induction chemo. We are at the main hospital today, we have been here since 9:30am. Spending our day in nuclear medicine while he has his kidney function testing done. They did an IV, which is not his favorite thing, but again it only took 1 try (and 4 of us holding/distracting). He layed on the table well while they took a bunch of pictures, and then we got to walk around the hospital, have some snacks, and then return to nuclear medicine for all the blood tests. They do blood work every 25-30 minutes for 3 rounds to see how the dye is clearing through his kidneys. Then they’ll do all the blood work that Dr Knipstein needed as well since we have an IV to draw off of. Yay! Love when they can group everything. From here we get to continue our tour through WI to Mequan to another satellite site of theirs where he will get an audiology test done. All of this is standard testing prior to him starting chemo because a lot of the drugs he will be receiving are very toxic to both the kidneys and the hearing. So they will follow these tests throughout to see if he is in any dangerous levels with either system that would be concerning enough to decrease or stop the specific drugs causing the issue. While all the driving stinks, we are grateful that they were able to get us scheduled for everything out patient today because that means we will get to be home the next 3 days all 4 of us together as a family and have some fun before everything begins Monday. Thank you Lord.
Rylan has been having a hard time with me being gone so long and it’s been hard not having or getting the time to spend with him before its bedtime and wake up to start rushing all over again. He got an unexpected surprise today of getting to spend the day playing with his pals AJ and Haley. I think he definitely needed this today as he’s always asking if we can ride our bikes over and say hi. Thank you so much Meg!! In the midst of our new chaotic life, Rylan learned how to ride without training wheels at AJ & Haley’s house last weekend. Chris held on the the seat for about 5 seconds and then let go and off he went. Those balance bikes work wonders! Yesterday as he was riding his bike in the driveway he said to me “you should haves seen me at AJ’s house, I was riding so fast!” I’m so proud of him!! That’s all he wants to do now is ride his bike, so him and daddy do a little bike ride almost every night. I know he looks forward to this special ride every day.
We are home now and little Cade is still snoozing away for his “nap”. I imagine this may be another night where he sleeps from 4pm until morning. Especially after these last 2 days for him in and out of the car for these long car rides, visits to all the different hospital sites. I’m sure he’s exhausted. I know I am. He’s a tough little trooper though! I couldn’t be prouder of this amazing and brave boy. It brings tears to my eyes just to think about it. I think we are all looking forward to a nice weekend together before our new world of chemo starts on Monday. How do I even begin to explain all of that to a 2 year old. The broviac line is going to be interesting for sure. He is not going to be happy. We will think about that all Sunday night. For now we will just live in the moment and enjoy the next 3 days together having fun. ❤️ ❤️ ❤️ ❤️
Our Warrior Journey 