EUA's Today 4-16

I wish so desperately I could write a post that says, "The EUA's went great!  No new tumors for anybody!  No issues!  They are headed home!"

But instead, all our hearts are heavy.  I can't imagine the anguish Leslie and Richard must feel each time they get these devastating updates.  I am amazed at how they are holding it together, and doing what needs to be done.

Let's start with the good and work our way to the bad.




THOMAS didn't have an EUA today.  His new eye looks good.  He's doing well.



MASON's Right Eye is good.  They had to laser one tumor again, but no new tumors have formed in the last few weeks.

Mason's LEFT eye has some retinal detachment, due to a large tumor.  So, they left the eye alone today.  They have been treating this larger tumor with localized chemo and it appears it has responded to the previous treatments, so that is good.  Due to the retina detachment, they don't want to aggravate the eye, so they will wait 2 weeks and see what happens.

The retinal detachment occurred along the edge of the tumor.  The tumor has 'collapsed' and started to calcify.  This is good, it means the treatments are working, and killing the tumor.  It is possible the detachment was there previously, but just wasn't visible yet.  Retinal detachment is never a "good" thing, but according to Meredith (another awesome Rb mom who we go to often for clarification) her daughter had a few retinal detachments that healed themselves eventually.

Like everything having to do with Retinoblastoma - this doesn't mean vision is restored to perfect...  It just means the retina can heal and vision can return to normal - whatever normal is for that person.  Obviously, retinal detachment comes in varying degrees depending on how long it has been detached.  This sounds like it will be a wait and see scenario for Mason over the next few weeks.

He has already been released from the hospital.

Here is a diagram of the eye.  This shows what a retinal detachment is.  I don't know exactly WHERE Mason's retinal detachment is on his eye.  This is just a generic example below, as I am a visual learner and do well with diagrams for explanations... :)

LUKE's situation is not clear cut.  This is uncharted territory.  If you are a frequent visitor, you may remember from their last EUA visit (link here) the localized chemo treatment wasn't administered as anticipated.  Topotecan (a localized chemo) and a jelly substance were inserted into the vitreous area of the eye instead of in an outer layer.  They watched him closely last week, and didn't see any side effects.

During today's EUA it was discovered that the "jelly like substance" hasn't dissolved, infact, it's spread throughout the vitreous area of the eye.  This was not anticipated.  Previously, it was staying in more of a 'mass'.  As this "jelly substance" is not normally inserted into the vitreous area of the eye, they just didn't know what to expect.  With the substance throughout the vitreous area, the Dr.'s can't get a clear view as to what is occurring inside the eye.  Are there complications?  Is the retina affected?  etc.

Therefore, they will perform a vitrectomy on Friday, on his left eye.  Visual below (since I am a visual learner...)

 Basically, they will go in and remove the chemo and jelly substance, and the 'vitreous fluid' from the eye and replace it with a saline type solution.  Dr. Gallie does not perform this surgery.  They are bringing in a specialist (not sure from where) to do the procedure. 

Once the cloudy fluid has been replaced it will give Dr. Gallie a chance to see what's occurring inside the eye.  In that this is new territory, they just don't know what to expect.  Therefore, she suggested that Richard come and be here for the procedure and for any news that may follow.

Luke's Right eye was pretty good.  He had 2 tumors that were small and lasered last time, and re-lasered this time as well, just to be safe.

In that Friday is also Good Friday, we are grateful that the specialist is willing to come on a holiday to do the procedure.  Let's pray for good news on Good Friday!  (Yes, Leslie was planning to return home to Edmonton tomorrow, but as we are learning, things don't always go according to the plan...)

Link to a description of vitrectomy here if interested 
(Not that this is the Dr. that will be operating on Luke.  I just liked the simple descriptions and visuals on this website.)