Hopes and Poop

Well, it's been a busy week for Joann and I traveling twice to Primary Children's in hopes to get some answers as to what's next with Tag.  We were really feeling hope that now that he's 4 months old, we'd be able to have the confidence of the specialists that surgery was imminent and possible.  In this, we were somewhat disappointed.

Also, after the MRI 6 days ago, Tag hadn't had a poop since.  He's been quite fussy and uncomfortable, as you can imagine. Today, I was at the office working and received a text from Joann that said, "We've got poop!"  I shouted out loud and gave Tag a cheer. Funny how my life has changed where I'm cheering for a badly needed poop by another human being. Isn't fatherhood great?

First we met with Dr. Bruggers, the oncologist assigned to Tag, and she reported the results of the 3rd MRI.  She said that the bump has actually grown a little bit, which shocked us all, as word was that typically Myofribroma's shrink over time.  However, we have learned that Tag's bump is so rare that they just don't have anything to go by or compare it to.  Honestly, we're talking only a hundred or so newborns have had anything at all like Tag.. in the history of medical record keeping!  Once again, Tag shows everyone that he's anything but typical.

She recommended that if Dr. Sadiki (cosmetic surgeon) feels it safe, she would like to see the bump come off, so we made an appointment with him.  We drove back up yesterday to meet with Sadiki and another new gentleman who is a neurosurgeon. Sadiki hadn't seen Tag for a few months and he reported he too was surprised that the bump had grown.  He and the new guy (can't remember his name) showed us the cat scans and we talked about what might be the next steps. I say might, because this is really uncharted territory for all of the capable staff up at Primary's.

Sadiki said that if the tumor hasn't invaded the skin (dermis) surrounding the bump, then we could take it off quickly, as the skin could be used to cover the spot.  However, if not, then we'd have to take the skin away with the tumor and in order to have enough skin (with hair follicles) to cover the spot, we'd have to do another surgery where they put skin extenders in another place on his skull to stretch the skin enough to create excess.  However, at Tag's current age his skull is simply too small and not developed enough to handle such things, and we'd have to wait until he's at least one year old to perform these procedures.  UGH.

Sadiki didn't know if the tumor had invaded the skin and he said he'd have to consult with Bruggers.  However, today Bruggers called Joann and said she would have no idea about the answer to that question and that was Sadiki's specialty.  This told me that Sadiki didn't have the answer when we were there and wasn't interested in telling us so.  Come on, Doc.. We can handle it.

The neurosurgeon commented that he was there to make sure that if they did do surgery and they found that the skull had gaps or holes in it, that he would be present to help do what was necessary to make sure Tag's brain was safe.  He felt the odds of this were very low, but that as a doctor in situations like this you want to be prepared for the worst, so that if in case it happens, a plan is in place.  I liked this man and agreed with his sentiments about being prepared.  

So now we await Sadiki's phone call to hear the answer to that question.  Obviously, we are hopeful that little Tag can get the bump removed sooner than later.  It just gets in his way and he is often grabbing and picking at it now that he is gaining control of his arms.

Thank you for all of your kind thoughts and prayers in Tag's behalf.  He really is such a happy little guy and makes people smile wherever he goes. Stay tuned.