Therapy

Today we took Finn to his first therapy session.  He has been exhibiting violent behavior such as bitting and hitting.  He has also been "peeing" out of his pull up at night every night since the news of Elan having cancer.  He was to the point of almost getting rid of them before the cancer.

So the therapist was great - really didn't talk with him much but gave us great ideas.  Finn basically is a great kid in her opinion but acting out as we had gathered :).  Specifically giving a reward for good behavior to mold the behavior we want him to do.  When he is starting to exhibit biting etc we should say positive things to someone else such as Elan.  Of course we have heard and tried in past similar things but she explained he is so bad because of being scared and frightened not because he wants to be bad.  Been doing it for 3 hrs and a full turn around!

We chatted for over an hour with Jessica Bell today too.  Nice to have the time to ask questions again even if on the phone - so much easier than bringing Elan in.  She was pretty frank in that since he didn't have a full resection the likelihood is low.  She also said low that Indiana will take Elan based on his resection. Good to have the information,  she did say that Dr. Heafner did better than we could have expected because it was pretty tangled up as she put it.  Not an easy resection by any means.  All information we had talked about but needed to go over again for our sakes.  Hard but good conversation... she is so good at what she does!  She did say MGH is so focused on a cure regardless of the child's outcome.  She said the kids they have sent basically came home for end of life care where MGH would say they were successful - all we already knew.

She provided me therapy today too.  I talked about how I went on Facebook and friended people who have kids a few years out with no sign of disease and how one said that the only side effect was basically tiredness.  She said if only that was the case!  It is the worst level of chemo they administer and kids are in an out of the hospital for at least a year.  She went on to talk about the other cases the hospital has seen and the outcome and quality of life they have/had.  Really helped us confirm we are making the best choices for our family.

All is riding on the next MRI tomorrow - but pretty low odds of getting into Indiana.  She said no studies on Proton Beam curing the cancer but will buy us time.  I am still not convinced it wouldn't get rid of the cancer all together.  We really really pray Indiana will take him.  Supply and demand.  Demand high and supply low.  Stinks!