News about Liam

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October 14, 2007

Each day seems as if it is subject to a little good and a little bad… and although it is important to understand the setbacks and challenges of Liam’s recovery, because they may help us in the future, we choose to focus on the good positive steps Liam is taking. Today we are thrilled to report that the preliminary lab results, from tests taken Friday (10.12.07) show that it is very unlikely that Liam has Posttransplant Lymphoproliferative Disease (PTLD). PTLD is a form of cancer that is treatable with chemotherapy that occurs in less than 1% of all transplant patients but is more common in pediatric liver transplants than any other. As we understand it PTLD is caused by either a virus caught during transplant or the immunosuppressant drugs taken post transplant. A bit of a two day scare because Liam is showing all the signs of having PTLD.

A fifth liver biopsy was taken at the same time the bone and marrow were taken for the PTLD test. These lab results were not as favorable. This liver biopsy confirmed the teams suspicion that Liam is currently in the early stages of liver rejection. We are not sure of the level of rejection yet but the transplant team is going to immediately increase his cyclosporine (immunosuppression), and Mephylprednisone (steroids) to attempt to reverse the body’s rejection of the liver.

So the search continues to find out why Liam is unable to tolerate any type of tube feeding, why his nutrition is such a major problem, why his diabetes is out of control, why his blood pressure is all over the board and why from one day to the next his anti-rejection drugs will be therapeutic, then to low and then the next day much too high. Today Liam will undergo a Full Body Scan with contras in the hope it might help diagnose a plan of action. It has also been decided that once Liam is stable enough to undertake another surgery they will be reinstalling a Gastric Tube (GI Tube or GR peg – semi permanent feeding tube placed in the abdomen). This will enable the team to remove the feeding tube he currently has in nose and also stop the TPN Feeds (IV nutrition) that is damaging to the liver and kidneys if used for extended amounts of time.

Despite all the medical unknowns, the constant nausea, the headaches, the 24/7 medications, sleep deprivation, blood transfusions, being woken up every 2 hours for blood work, biopsies, IV lines installed and reinstalled, main port line changes, lack of privacy and loss of dignity, Liam continues to be optimistic and positive. In all honesty there has been days where we have felt less than optimistic, defeated, wondering if Liam was ever going to be able to return home… but on the other hand we watch Liam, never once giving in to the enormous challenges in his life. He continues to fight for his life with great grace which gives us the strength and courage to understand that his unwavering faith will heal him.

It’s interesting to watch Liam in his environment, the hospital room and on a good day the hall way as well. His community is the doctors, nurses and other care givers that interact with him on a daily basis. It’s very clear to us that Liam is making a difference in his environment, to the people around him. You can see it in the way people respond to his warm smile and his ability to make the best out of a bad situation. Doctors, nurses and respiratory therapists have all been in to visit Liam on their days off. Maybe under the cover of needing a Halloween candy, or to play a game, maybe for another attempt to beat Liam at Wii “Dance Dance revolution” , or to settle their curiosity on the results of the latest lab work… But we know it’s much bigger than that. We know these people are watching Liam in amazement of how he is handling his challenges. They are watching and learning.

Our prayer today is that Liam never loses his will to live and continues to mentor those around him with great life lessons. We are eternally grateful for your continued love and support.

Bill, Nancy, Liam & Shannon