Dr Ruge updated us this morning that the final pathology report is also showing the tumor to be a Medullablastoma. This of course is not the news we were hoping for. We were still hoping there could be some miracle turn of events and the final path show it to be a benign astrocytoma like Chris had. They have sent it to St Judes to have their pathologist review and anazlye it as well and this is when the tumor will be further broken down into more details like the grade of it and it’s genetic components. This pathology report will give the oncology team here a better idea of it’s aggresssivenes and what route of treatment they will need to prepare for to fit Cades health needs best. We know his treatment will be a mix of radiation and chemotherapy, but they’re not for sure yet how it will play out as they typically do not start radiation on children under age 3. They know he is not far from his 3rd birthday, but likely they’ll still opt to start with chemo treatment instead to be safe and wait until he’s 3 for when the beginning of the radiation therapy would start. The oncologist here, Dr Agrawal, explained that today treatments is done as a standard of care through what is called the Children’s Oncology Group (or COG). This standard of care is used by hospitals across the US, Mexico, Canada, and some of the European Countries. St Judes and Dana Farber Centers are the only exception to this as they use their own individual studies and treatments.
Cade will have a port placed and a spinal tap done at this same time. The spinal tap is to make absolute sure that nothing has spread to the spine. A double check to the MRI of the Spine that was done and saw no lesions. This saddened me to hear, as I thought the spine MRI cleared us of lesions, so I am praying to GOD that the spinal tap will reveal nothing different. Just a normal spinal tap. As the oncologist started talking about a permanent line, I knew she was talking about a port. I found myself fogging over a little as her words washed through me. All I could think to myself was that this is real. This is happening. My sweet boy has cancer. She went on to say that while still rare, brain tumors are the 2nd leading cancer among the pediatric population. They plan to do the port and the tap a couple weeks after we are discharged, and then likely start his therapy a few days after that just to allow him to go home for a few days of normalcy before being admitted back in to the hospital for the start of treatment. We will not know full details of drugs, schedule, cycles, etc. until the St Judes path report comes back. They anticipate this to be by early next week. The radiation oncologist did, however, mention that he feels he will be inclined to send Cade to the Proton Center in Warrenville, IL for his radiation treatment. Proton therapy will be a safer route for him as it has less long term effects, and with his age that is the goal. They want him to have the best quality of life both now, and 10, 20, 30 years from now. The challenge will lie with how we can figure out to have some what of a normal life for Rylan throughout all this therapy in the different places and what Chris and I will both do with work. Obviously that is a HUGE concern, and FMLA allots a total of 12 weeks. They gave a rough ballpark of 9-12 months for his estimated treatment time. This is overwhelming and stressful to me with how I am going to figure out working 4 days a week once my FMLA is up, but I have to figure it out because I hold insurance for me and the boys.
I am trying to remind myself to just breathe. And find some belief in the saying “The Lord doesn’t give us more than we can handle.” So apparently God thinks I’ve got this. Sigh.
Deep breathe. I might have to invest in an Apple Watch now…they do hourly reminders to breathe, right? Lol.
Our Warrior Journey 