The Results of MIBG Scan

The Results of MIBG Scan

The Results of MIBG Scan

The Results of MIBG Scan are here!  Is it sad to say this is a bittersweet result?  On one hand, Neuroblastoma (NB) is the cause.  Amongst the cases, between 50-80% are NB related.  Some cases are being identified as something that happens after a virus.  Also, after vaccines.  Lastly, autoimmune.

We know that Hunter did not have a virus and he had not had any vaccines (this is not something I am going to delve into further).  So, we had NB or autoimmune to differentiate between.

Testing Time

Hunter has every test known to man.  He has had lots of testing.  In fact, he constantly goes from urine tests to MRIs to CT scans to Xrays to the second largest genetic test there is.  EVERYTHING came back normal.  Well, I take that back.  Everything but 1 thing came back normal.  His Lumbar Puncture (LP) came back with high opening pressure and 5 Oligoclonal Bands.  This means that there is some type of illness present.

Well, Duh.  At the time, he couldn’t even sit up much less stand or walk.

This is what we had to work with.  I had asked a couple of hospitals to do the MIBG scan but all declined.  This last hospital, Vanderbilt Children’s, is the one who brought it up to me.  I was eager.

In OMS world, the longer you are *past* onset, without cancer, the less likely you were to develop it on down the road.  We, at the time, were 2 years past the onset of his illness.  I felt confident that he did not have NB.

However.

In my glorified thinking, I think that if he has NB, it is encased.  If it is encased, it is an “easy” surgery to remove it. Once the removal of the NB has happened, the symptoms will be gone and he will be normal again.  Is this the case?  I don’t know, maybe sometimes.  It really isn’t as clear cut as my glorified thinking.

Reality

Reality is that the treatment system is the same.  Monthly IVIG, monthly steroids, and then Rituximab (which did not work for Hunter).  We now have to decide between Cyclophosphamide or Plasma Exchange (Plex).  Since this is not something we are discussing right now, I am happy to set it out of my mind.

OMS is a life-altering condition that will not go away.  It can go into remission though.  Remission can be from cancer or from being so symptomatic with the autoimmune side of life.

Good news:

Hunter DOES NOT have cancer.  My glorified thinking is putting all the pieces back together.  Hunter has been given complete healing through the stripes of Jesus.  This is not a life-threatening condition, in him.

These are all good things!

Related Posts:

MIBG Scan

One Year

Reflecting on an Open Letter

My Miracle

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