Today is a day of joy and excitement…or at least it will be in a little bit when we ring the bell on our way out of the unit. Today we get to go home!Amen! This couldn’t have come at a better time as Cade was sitting on my lap earlier this morning crying and saying to me that he wanted to go home. It made my eyes tear up. I just replied, I know baby, I want to go home too.
Dr Ruge came by this morning and talked with me. He said his MRI looked great, and the little bit of accumulation they saw is not concerning at all. It’s quite possible we drained him a little to much when the EVD was in, and that it is nothing to worry about. We do have a safety valve and he went on to say that if the pressure were to begin to increase, the area at the incision would begin to bulge and/or we would see drips of fluid begin to leak out of the area. Those would be red flags to call him immediately. But overall, if I was comfortable with it, he felt that it was time to go home. That Cade needed to go home and be in his normal surroundings. The vomiting continues, and I was worried it may keep us here another night, but he said, as he’s said before, that due to the area of the tumor and the inflammation that is still there healing, that Cade could continue to vomit once or twice a day. As long as I know what’s “normal/expected” I am absolutely fine with going home and managing him there. Cade has some photosensitivity as well, which he feels should begin to resolve over the next week or so. He said it doesn’t help that he’s in this dungeon, and that it’s not a healthy surrounding for anyone, especially a little toddler. He is very happy with how Cade looks, and I showed him the video of him playing baseball in his room last night, which he thought was great.
We are going to go home on the scheduled zofran and hydroxizine during the day, no longer waking him during the night to give medication. He received his last dose of decadron yesterday, and Dr Ruge had said that being off of that could be an adjustment too, but he’s happy he is off of it. The palliative team wanted to keep him on the nausea medications since vomiting remains an issue so we can try and make him as comfortable as possible at home. They’ll also send the Ativan home because it definitely helped in combo with the Zofran, but just as an as needed basis to use if he had a bad day of vomiting or to maybe give at night to keep the nausea and vomiting away and allow him to have a restful night sleep.
The plan now is to go home and let Cade enjoy his normal life again for the next week. Dr Agrawal, his oncologist, will call us later in the week once she has the results from St Jude’s pathology report and we will discuss from there the types of drugs and more of a timeline for his treatment plan. Next Monday, July 2, we will come back to the hospital for Cade to have his port placed and the spinal tap done. Praying to God that the spinal tap reveals nothing, just as the spinal MRI, then the discussed course of therapy will still be our plan. They will let him go home for a couple days and he will return to their clinic Thursday, July 5, to begin his 1st round of chemotherapy. We briefly discussed chemo, and it sounds like we will always go to the clinic first, which is on the same floor as the Peds oncology unit here. There the nurses will access his port, draw blood work, be sure his levels are all appropriate and see if there’s a need for any blood products. If he were to need anything, they would give it there in the clinic. Otherwise, if all is well, then we would go over to the unit to begin that therapy.
I pray for a week of peace. A week of continued healing for Cade and him to begin to feel like a normal 2 year old again. For him to find happiness when he gets outside and takes in the fresh air and feels the sunshine on his face. Joy when he gets home and feels the grass on his feet, pets Henry for the 1st time in almost 2 weeks, plays in his favorite water table. And lastly, I pray that it is a vomit free drive home!! (Dr Ruge said it is not uncommon for them to vomit when they get home or even on the drive as they adjust to the movement)
Our Warrior Journey 