Matthew was moved to the PICU last night for observation as his blood pressure had dropped and his fever remained fairly constant. Since then, his blood pressure has returned to normal and he has been fever free since this morning. He is still battling a very nasty blood infection and has been for the past several days. The nights are sleepless. He is in considerable pain and we are giving every pain medication we can as often as we can to try to make him comfortable. This afternoon, he did start to calm down and he has also napped for a couple of hours straight which is a huge improvement. He had a tube put into his nose and down to his stomach for suction. There was indication of a blockage of some sort that the suction was going to help alleviate. As his vocabulary is limited, it is difficult for him to tell you what hurts. He cannot eat or drink anything and is all he says is 'tummy hurts', 'water', and 'chocolate milk' (pronounced 'chalk-it milk'). I tend to joke around but it is the most hellish and unbearable experience imaginable. The exhaustion, anger, frustration, confusion will (not can...will) wear you down. The support from everyone has been awesome and we need it now more than ever.
Just learned that a friend of ours is running the chicago marathon for the leukemia society. Other friends of ours also have been involved in activites for leukemia awareness. I know with a great deal of certainty that matthew would not be alive without this research. I do not think I mentioned this before but the reason that there is little data regarding matthew's current relapse is that until recent advancements, kids simply did not live this long. They are seeing more cases like matthew's because more and more kids are living longer and longer as the treatements for leukemia improve. I am sure there is a fundraising component for her marathon training and will post that info when I get it.
Matthew and Claire's new ipad arrived with little fanfare. I am surprised at the amount of time I have had to devote to playing with configuring it to maximize their educational experience.
An aggressive (fast-growing) disease in which too many myeloblasts (immature white blood cells that are not lymphoblasts) are found in the bone marrow and blood. Also called acute myeloblastic leukemia, acute myelogenous leukemia, acute myeloid leukemia, acute nonlymphocytic leukemia, and ANLL.