January 16th, 2016


Saturday’s in the university area of Philadelphia are much quieter than the rest of the week. Today our friend Phoebe took me outside of the University area on a nice walk/hike. It was great to see a bit more of Philadelphia.

It was a quiet week for the most part. Addie did have a Zometa infusion on Wednesday night. Zometa is used to reverse the bone breakdown in Addie’s body – and hopefully help the bones become more dense and not so brittle.

Addie’s output is still about 1500 ml’s a day – no chyle – just pink lymphatic fluid. The lymphatic team feels like it is time to take out the chest tube and see what happens. The idea is that the body will reabsorb some if not all the lymph fluid. It has also been known with other people with this disease that for some reason their bodies want some lymphatic fluid in their plural lining – and as long as we keep sucking it out – it will just keep producing. So on Tuesday evening the plan is to pull out the chest tube. Addie will be put in ICU so that she can be closely monitored. If it does not reabsorb and reach a happy level within her body – they will put in a different kind- of chest tube that attaches to a chamber that attaches to her body. This is a set up that they feel she will be able to have at home. Addie is ready for the next step. The idea is that we manage this chamber at home – and perhaps as the sirolimus becomes more effective – the output will continue to decrease and then the temporary chest tube can be pulled as well.
There is one other concern at this time. Her shoulder is also full of lymphatic fluid that we believe is coming from lymphatic masses that will not go anywhere, and it appears that the fluid is increasing and accumulating in her shoulder and her back. The current thought is that we really need to do a biopsy of her skin on her left shoulder. The biopsy would tell us if her cells would be receptive to either prednisone or vincristine. If the cells are receptive to either of these medications they think they may be necessary in order to help slow down or shut down the lymphatic masses and lymphatic fluid in Addie’s shoulder and back. They are concerned that Addie’s disease is still being aggressive and that coupling these medications with the sirolimus may be necessary.

Addie and I miss Montana, our home, our family, and our friends. However the support and love has not wavered. Today and tomorrow Brittany McLaughlin with Writing with Light Photography and Design is hosting the 5th Annual Pictures from the Heart Benefit for Addie.

The Lowder’s continue to love and bless us from afar.  They have asked that in lieu of donations to their family after the passing of their precious son and brother that they would like donations to Addie’s medical fund. So far $5,800 have been donated to Addie’s fund in honor of Abe. I only wish I could shower them with as much love and consideration during their difficult time.

We press on – and hope and pray for answers and relief to come Addie’s way soon. Michal