Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 21, 2002

BMT + 19

The situation for Robert is very serious. The doctors told Mark that Robert’s VOD is moderate but if his bilirubin continues to climb it will become severe. Once it becomes severe, they use anti-coagulates to stop blood clotting. Thinning the blood is also very dangerous; it can cause internal bleeding that can not be controlled.

Mark and his father spent most of the day today on the internet reading everything they could find. In the papers on adult VOD there were some graphs that showed the rate of rise of bilirubin. The onset of problems was much sooner in the adults and the rise was much greater in severe cases. In fact, if you adjust for Robert’s later onset the graphs match; with Robert’s current quick rise in bilirubin overlaying the severe case consistently.

The doctors have said the next two days will tell which way Robert will go.

If you have any extra time for more praying for Robert, could you do it now? He could still use some extra help.

Counts

Update: Sun, 21 Apr 2002 23:22

Robert did go a second day without fevers; his highest temperature was 37.7. He seemed more comfortable, except his stomach area is very extended. It makes it hard for Robert to sit up right.

The doctors now believe it is a case of VOD and are treating it with TPA, a blood-thinning agent. This will hopefully break down blood clots forming in his liver. The side effect is more bleeding than we want or can handle.

The Doctor who is a fellow, Dr. Lieuw said the mortality rate in children from VOD is less than five percent and fatal bleeding from TPA is less than 1%. They wanted to start him on TPA at 2:00 p.m. but he needed platelets and he needed the platelet counts checked and a lot of other medicines delivered. It was after 8:00 p.m. that he received the medication.

Mark has been reading everything he can on the Internet for the last few days. He told me tonight that Robert’s latest counts would likely signify some renal failure.

All we can do is wait and see how Robert does and continue to prayer.