The Breathing update....

After a long drawn out mess; the verdict is; that in order to do surgery Carson would need to not have Chemo for 6+ months the risk of infection is WAY too high; they would want a normal child to have a very high immune system to do a surgery like this; it is one that requires them to break the chest bone; and be-build the airway that is weak and narrow. So the risk is too much for him at this time; but we are going to be doing some more testing to find better ways to help him breath, and not get sick so often. The doctors have really never faced a child who has cancer plus Bronchial Malisia. So he is a “odd” case, and I hate, despise, and want to strangle doctors when they say he is “odd” I want normal I want my child to be NORMAL not to be the “odd” case that they don’t know what to do.
We had a very long week. We started with a PFN (Pulmonary Function Test), Then Pre-school graduation, The next day we had an MRI to find out about leg pain; there is some blood flow restriction in his lower calves; so we will be working with doctors to make sure we are being proactive. He then had Chemo. Yesterday we met with the Pulmonary Doctor to get the results of his PFN; he takes twice as long to empty his lungs as a kids his age would, we are going to work with the Pulm doctor to try to avoid surgery and try all options even out of the box ones. We were really hoping the medication he was given at CHOP would have helped much more than it did, so now we in un-charted water .He is very excited about our upcoming trip to Light House Retreat. It sounds amazing, and I hope it is all we are expecting as we embark on this journey, a nice vacation and relaxation will do us great. 

Pulm test He did great even though it required him to breath 20+ TIMES  into a machine. The results told us that a normal child his age would empty their lungs in 6 seconds and it takes carson 12-14 to do so. :( not the best but we already knew this. 

GRADUATION 

As a mom with a child with cancer; we celebrate everything! I have too often been hit square in the face with when I attend services for my friends children that it could be me in those shoes; so again it reminds me that we have to LIVE we have to make the most of everything; because it could be taken, I pray it won't but it could be. 

MRI- He sat still for just over an hour for this test! He did amazing! The doctors and nurses were worried he would have trouble sitting still for as long as he did but to our surprise he did awesome and did it with out problem.. 

waiting for chemo

Chemo

I love his selfies!!!

T-bone part of the Mascot Miracles Foundation is the boys fav.