@castielvscancer: UPDATE - Today was a long day. We got some good news and some bad news. The good news is he has no new tumors and many of his tumors show a decrease in size and the tumor area from the surgery doesn’t show any tumor. That was a big relief. The doctors are happy with his results and we are moving on to the next steps of his treatment. We have more tests this week, checking liver, kidney and heart function. We checked his eyes and hearing today. His teeth next week… All in preparation for his stem cell transplant. Now the BAD news. Castiel has lost hearing. He has lost high pitches and we could not get the actual amount of hearing loss.. well because he is 11 months old and he didn’t not want to participate in the tests haha. More BAD news is we found out today that the stem cell transplant isn’t one transplant… it’s two. So not 6 weeks but 12 weeks in the hospital…. With maybe a week or two between. We also found out the treatment is much more aggressive and difficult for Castiel than we could have imagined. The first three days he can’t be touched without gloves or body protection. Being pregnant, my husband has to change hi diapers and hold him and help him through the nausea. He needs baths every 6 hours and can’t use his own clothes or blankets as they need to be washed every 6 hours. He is going to have sores in his mouth, throat, stomach and intestines. He will be on a constant drip of morphine… but he will still have pain. The week of chemo isn’t even the hard part. Day 8 is the stem cells transplanted back to him so that he can survive the next few weeks. There are risks.. ones that could lead to ICU stays of months and the Doctor told us today that some patients don’t make it through this treatment. The percentage is around 5 percent but that is insane. We have to figure out work and time off, no pay, support and caring for our older son who is in school and has autism. We have family who has been so helpful… but this is going to be a battle. The stress emotionally and physically on Castiel and us is scary. Why they waited to tell us this now makes sense because that stress from the beginning would be too much. Knowing Castiel has to go through this is heartbreaking. We will be there the whole time no matter the cost. Thank you for everyone who has and continues to support us and follow Castiel in this battle. #castiel #cancersucks #neuroblastoma #Cancer #neuroblastomastage4

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Thursday 28 August 2025 00:35:05 GMT