We are still waiting for answers. They are running a lot of test right now to figure out what the new pain is, why a fever, and more.
- ultrasound, mri, x-rays, blood cultures and more I don’t recall-
Morgan has been in terrible pain for several days and hasn’t able to get relief from the “installed” pain pump in his abdomen. Today they added Delotid to his IV line, he can give himself 1mg every 10min up to 4 times in an hour. I am told that 1mg would stop my breathing.
Kate and I were able to visit him today, Kasha was there and Morgan slept. It was the first real rest he has had in days, while be it from medication, he was sleeping. It’s hard not to be able to visit with him- but worse to see him quietly endure the pain. Even when I leave the hospital, he and Kasha never leave my mind. In constant thought and prayer.
It’s heartbreaking really. all of this, brings me to my knees and breaks me again. I love my Morgan, to have to sit and wait and watch without being able to help, and keep waiting for answers. hurts! I want to know what’s going on in his mind, heart, body, spirit… I don’t want him to be scared, alone, and hopeless. He is accepted and loved- as is. I want peace, comfort, security. I want him to know deep in his heart how much I love him. I say it, I show it, but does he really know? Others too that would stand up and say me too!!! I want him to know how much we admire him and how big our cheers are. How much we want him to be ok, but how we will be here no matter what- all along the way.
We’ve had some great times and experiences in the last three months without chemo and Morgan feeling decent. I am reminded again how special the times are when he is feeling good. We’ve taken advantage- but boy, we should do more!! I’m already planning …
be in touch…
Filed under Family & Friends
Post a comment/ reply below, or follow discussion on our comment feed (RSS 2.0).
WE LOVE YOU UNCLE MORGAN
had to decrease pain med doses, labored breathing. mri today
Hey Melissa, I just wanted to thank you so much for keeping everyone updated by writing on Morgan’s blog. I know I have told him this before however it never hurts for him to hear. Please tell Morgan that he motivates me everyday and that Im praying for him.
Love, Cousin Bryan.
Hi, this is Anjeanette, Steve Klinder’s wife. Our son has some medical stuff that we deal with and it drives me crazy when people give unsolicited advice…but…it feels helpless to sit on the sidelines and not be able to help. I have a friend whose son had Neuroblastoma when he was two, he is now almost 7 or 8. I asked her if she has any advice like something that could be helpful. She told me there is an ACOR list (I’m not sure what that is…I asked her and I’ll let you know when she tells me.) She said that there are two or three other adults she is aware of with Neuroblastoma. She suggested it may be helpful to get in touch with them. One has a site http://www.annabanana.org/ . Sometimes getting in touch with others in your shoes helps. And from the sidelines, it feels like we are doing something by passing on unsolicited advice;) Take care and thanks for keeping us informed as to how Morgan is doing.
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=N-BLASTOMA&A=1
I believe this is the ACOR she was talking about. It is an online support group for cancer. Of course, I bet you already know about this and it may be annoying to have us suggest this stuff to you. It is just our way of reaching out and letting you know we are thinking about Morgan.