Adam's disease has, as expected, progressed. There are no new areas of disease, but increased intensity in skeletal uptake is seen on the PET scan. Bone marrow biopsies also confirm extensive progression, neuroblastoma now invades almost all of the bone marrow space. This coming week we are due to start a different combination therapy based upon Adam's genomic profiling. Tomorrow (Monday) he is due to have a new portacath surgically inserted.
His temperatures have been higher than they were last week, but not to the extent that he has spiked an actual fever. His leg is still giving him a lot of problems and he is mostly immobile.
Thank you for Adam's birthday wishes. He enjoyed the day (Friday) as much as was possible, and he had some nice presents. The morning was spent in clinic discussing scan/test results, but living a life that is impossible to explain to anybody who hasn't been through something like this, we got on with his birthday regardless. His leg was much improved from the day before, and I probably encouraged him to do too much. We went out during the afternoon, and stayed out for some food; when we returned he was in a lot of pain and discomfort. Not a good end to the day, so unfair on him, and nothing we could do to help. At one point, when no amount of shuffling would help, and no change of position brought any relief, he resorted to simply thumping his "Stupid, stupid leg".
I'm so sorry to hear Adam is going through that. No child should have to. I'm sorry to hear of the disease progression as well but this battle is far from over! Adam is gonna kick cancer in the face. You guys are in my thoughts and prayers!
ReplyDeleteThough I've never met you, I think about your family every single day. My heart breaks for Adam and for the whole family. No child should suffer like this, and no parents should have to endure what you've endured. What a cruel disease. You're in good hands in Michigan, and I hope the doctors are able to relieve Adam's pain and fight this horrible disease from progressing. You are a remarkable family with a remarkable 9 yr old boy. Hang in there.
ReplyDeleteHi Nick, Just read your latest blog on Adam. How things have changed since we last met, but hoping that Adam has now got some relief from his painful leg. You are wonderful parents and never give up. Adam knows this, and will fight the fight with you. Nils and I send our love and hugs. Keep smiling, and never give up. X
ReplyDeleteGutted for you all, especially Adam. Thinking of you all loads as you continue fighting & hoping things turn the corner very soon X
ReplyDeleteSo sad reading this update. I have no words, other than keep fighting the fight and never give up on hope.
ReplyDeleteAlison thankyou for replying to my earlier post asking where to send a gift to Adam. Do you have an address over there so I can send it to Adam now?
Kind Regards
Elaine x
Absolutely gutted for you all. I know from bitter experience that there is nothing I can do, and wish there was.
ReplyDeleteWe feel for you all and although not particularly religious I will add Adam to my daily prayers.
Until early December, Adam will be staying at Renucci Hospitality House, 100 Michigan Sreet NE, Grand Rapids, MI 49503. Any post probably needs to be c/o Alison Macready as the room is booked under my name. Thank you for everyone's kind thoughts.
ReplyDeleteThankyou Alison, I will send Adam's gift this coming week.
ReplyDeleteLove and Prayers for Adam.
Take Care
Elaine xx