I began writing about Johnny's last weeks a few weeks before he passed, but never completed it. He is in heaven now, and not only mine and his mothers angel, but everyone else's who he had touched, which is many. Thank you ALL for being a part of his life, uplifting him when he needed... his friends meant the world to him. We can't thank you enough for the gift of friendship and loyalty that you gave to him and us... but thank you. You will all be in our hearts.
July 24, 2013
Today was a difficult day.
Johnny finished bowel radiation 13 days ago, and his melanoma oncologist wanted him to get a full body CT scan, and a brain MRI before beginning more chemo. His doctor wanted to see if and how much his disease has progressed before starting back on a chemo regimen. He got the tests 2 days ago, and Johnny, his mother, and I met with her today.
She explained that his cancer has gotten worse in the bowel region, and there are new lesions around and even infiltrating his bladder. The cancer in his brain has also gotten worse. She went on further to tell us that she did not want to give him more Abraxane, the last chemo he was on, because she felt it wouldn't help, and could actually make him more ill. She mentioned putting him back on the first chemo-pill he was on, but again, said it would definitely make him sick, and wouldn't help with the brain metastasis. Then she talked about weighing his quantity versus quality of life, and bringing in hospice so he can pass at home with family. He has decided that he wants to feel the best he can feel for the time he has left. He asked her how long that would be, she said maybe a few months. We will be taking day trips, spending time with family and friends, and trying to stay as positive as possible. It has been an emotionally draining day for all involved, but Johnny seems to be handling the news as well as can be expected. Please keep him in your thoughts and prayers.
July 1, 2013
It has been a few months since the last update. After the last post, Johnny's oncologist decided to discontinue that treatment. Then it was on to the clinical trial stage. We stayed at Jeff for hours meeting with a clinical trial nurse filling out paperwork. Long story short, after many hours of being there & hopes up that he would qualify, we went back the following week, and he didn't qualify. His oncologist recommended another type of chemotherapy, Abraxane. It would be once per week, each week, for 3 weeks, with the 4th week off. He received 2 treatments, and was still experiencing some bowel effects from before. His melanoma oncologist recommended a 10 day course of bowel radiation. The very day that his new regimen was suggested, he lost most of hearing in his left ear. In November 2012, he awoke with severe ringing in his right ear, and lost most of his hearing from his right ear that day. The doctors are still unsure of what has caused his hearing loss... cancer, chemo. Johnny had a few steroid injections in his right ear in November and was on oral steroids for a few weeks after, but it didnt help. He has gone through the same thing this time and it does seem to be helping. he gets rechecked next week. His radiation oncologist didn't want to begin radiation therapy until 6/25. We drove to the beach after I got off work on the 21st, and had such a wonderfully relaxing time at the beach. Much needed. We went straight from Wildwood to Jeff Tuesday. Unfortunately, Johnny was unable to receive radiation that day... complications with the computer systems and the machine. We came back the next day. He got radiation W, Th, F of last week and was ok til Saturday. Since, has been quite ill. Severe stomach cramping, sleeping a lot. He was due for radiation today but he decided to take one more day to rest. Will resume tomorrow, July 2 & 3, then Friday July 5. Then 4 days next week and he's done with this. Back to the Abraxane. Hopefully.
April 24, 2013
He began his 3rd round of chemotherapy yesterday, which will include the drug that will lower his white blood cells. His oncologist lowered the dosage level of that drug, so hopefully his bloodwork levels wont drop so low as to warrant another platelet transfusion, but only time will tell. He will get bloodwork drawn every week to check. I am so thankful that his mom is so close and available all the time now. She takes Johnny to chemo Tuesday, Thursday, Friday, and I do Wednesdays. Like she says, "For Johnny, anything!" Love her :) Here he is today...
April 23, 2013
Today is the one year mark of when Johnny fainted and was rushed to the ER. It has been a long and difficult year for him, but he continues to remain strong. He has been through full-brain radiation followed by months of chemotherapy tablets (Zelboraf). When his oncologist saw it was no longer working, he began an IV immunotherapy (Yervoy). This was supposed to be administered every few weeks, but he had awful stomach reactions that prevented him from receiving anymore doses. These 2 drugs are the first in over 20 years for melanoma, and his body rejected them fairly quickly. So they started him on a more typical IV chemo a few months back, and after the 1st dose his bloodwork results weren't good. His white blood cells were very low, which was caused by the chemotherapy, but his red blood cells were extremely low, which they couldn't explain. He had numerous blood transfusions, and still his red blood cells would drop. After many tests and scans, it showed an actively bleeding, softball-sized tumor in his large intestine. It required surgery to repair. Johnny spent the end of February at Jeff having his surgery, getting an infection at the surgical site, and returning home with a completely open wound because they had to open his stitches to allow for drainage, and left it open. He spent the next few weeks changing his own dressings in pain and discomfort, but his incision needed to heal before his next chemotherapy could be scheduled.
He recieved his 2nd round of chemotherapy March 26, and it continues for 4 days. He will get a certain drug that lowers his white blood cells every other chemo, but that was included in his 1st round and wasn't included in the second. For the most part he handled the treatment ok, with some intestinal side effects, and it was on to round 3.
