I spoke to the dr and the reason we are waiting is because once the bleomycin is injected in the cysts it also travels through the other channels and scars up the area around the actual cysts. We've notice major improvement in the back of his neck! He also doesn't want to keep pumping this little baby full of anesthesia. Understandable. We will re-access in about a month and schedule another injection after that.
Assessment went well. Dr was happy with the recent results on the back of his neck. He will get another injection set up within the next 2 weeks. Can't wait to keep seeing good results. The area under his chin is where the small cysts are, so we will start working on that now. I actually met a lady in the elevator on the way to this appt whose daughter also has this. Except hers is all over her chest, arm and side. She is dealing with the other dr we met before and I think this might be the lady he was telling me about when we met him. She had an injection appt that morning and we didn't have a lot of time to chat. I wish I would've got her email just to keep in touch. Her little girl was born 7lbs with 4lbs of tumour. She said it was slow going but seems to be working better lately. She couldn't believe how smooth Kaiden's skin still was after the injections. Her daughter's skin is puckering and leaving little scars all over. She said surgery wasn't an option for her girl because there are so many arteries and nerves throughout her cysts. They also almost lost her at 28weeks gestation when her cysts ruptured. I'm not sure if they had to deliver early, but just another
time when I realize how lucky we are to just be dealing with this. Things could be a lot worse.
Kaiden at 6 months
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