June 5, Day +19

Sorry I haven't been posting, the last few days have been difficult and blurry. Unfortunately, we don't have any good news to report...we are getting admitted today due to a fever. He received more platelets on Monday but despite all the transfusions, his platelet counts are still very low and his little body is bruised all over. He is in so much pain that my normal cuddly son does not want to be touched, not even on his feet. He has also been suffering from a combination of a hemerroid along with an internal tear or abcess, the pain from the bottom is excruciating for him, he cannot walk and we spent the past 2 days laying down watching netflix and a little light reading. His energy level is very low, doesn't have an appetite and he is overall feeling very crummy. He just received his first dose of morphine for the pain and is now sleeping. There isn't really any sign of engraftment yet, all of his counts are just really low. We were really hoping for some sort of upward movement in his counts. The good news is that because his counts are so low, the tear or abcess doesn't have anything to grow on, so we are lucky in that regard because it could have been worse and turned into a really bad infection. Right now, it seems as though we are one step ahead of the storm-but then again he does have this lingering fever... The nurse just came in and now gave him some FLAGYL, an antibiotic for any sign of infection in his gut. He will need to have another blood transfusion and some other kind of broad spectrum antibiotic. I wish that we had been giving him colace the entire time that we were here, it may have possibly prevented all of this pain for him. Our friend Andrew is still in I.C.U. The doctors have told them that the next few days are critical for his survival. He is sedated now since he is intubated and still fighting his pneumonia. He has some signs of VOD, where the tiny blood vessels around his liver are not working, and is awaiting approval from insurance to receive a trial drug that may help with this issue. PLEASE pray for Andrew and his family-I can't even begin to imagine the anguish that they are going through-it must be sheer torture. Connor asks about Andrew daily and is so worried about him and feels terrible that he has been stuck in the hospital for so long. Sorry we don't have better news to share. We hope that things will turn around soon and are hopeful that it will soon. It is very difficult to stay optomistic and positive and patient when your child is suffering. And to make matters worse, the Kohl's house is closing on Friday so sometime this week we have to find time to pack (and we now have double the stuff that we came with due to all of your generous gifts) and move to the Ronald Mcdonald house in Lincoln Park where we will stay for 2 weeks and then we have to move again to the new Ronald Mcdonals house near the new hopsital. All of these moves are going to be difficult b/c Connor does not like change and he just got used to the Kohls house. Looking back, we were so naive- we thought that we would be able to go home after Friday and just go back and forth but it looks like our bumpy patch is just beginning and we may be here a lot longer.