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Thursday, November 29, 2007

Liam Complaining of Leg Pain.....

The last two weeks have proven to be more of a challenge on the cookie front than we had bargained for and to add further stress things have not been as desired with our Prince. Liam completed his 5th round of 3f8's the week prior to Thanksgiving and then started Acutane the week of the holiday. He was very nauseous all of last week and was not able to keep much of anything down. We of course were concerned since he had not had any issue with Acutane during any of the past rounds and he did not seem to have any flu like symptoms. Anti-nausea medication had little impact and he chose not to eat for fear of throwing up. Liam lost 4 lbs. over the course of two weeks and this was troubling for us to say the least. This week his appetite suddenly returned and the nausea has all but disappeared even though he is still taking Acutane until the end of the week. Unfortunately the nausea has been replaced with something far more scary to any parent who has a child with neuroblastoma....leg pain and a slight limp. The fear this specific symptom strikes in you is all consuming. Liam would not climb the stairs today at school and his loving teacher had to carry him upstairs to the play area. We have been told some kids have severe bone pain while on Acutane so there is some potential reason for his pain other than the first thing that pops into a parent head who is in our situation. Liam just by chance had an appointment today at Memorial for a blood draw to see if he is still HAMMA negative so he can receive another round of 3f8 antibodies (6th round 7 weeks from now). His doctors have been alerted and will see him while he is there this afternoon. I am sharing this with you for the sole reason of sharing the fear of our unknown. Today is one many we will face not knowing if we are to be dragged back down into what can be described as nothing other than hell or if it is nothing to worry about and all due to Acutane. It is ironic this happens now while we are fighting harder than ever, along with the support of many of you, to find away to fight back against this terrible disease. I sit now waiting, worrying, trying to work but hanging on every phone call hoping it is Gretchen. I struggle to find the words to even post and though I have convinced myself it is nothing more than side affects due to Acutane, the fear is real and the feeling felt back in February when Liam was first diagnosed is again present. We of course will update when we know more. Liam is due for his 90 scans and bone marrow tests just prior to Christmas. I guess this is a reminder to continue to pray for him and to keep him in your thoughts. It is a reminder to Gretchen and I that though we have had a small taste of normalcy lately if you take out trying to sell 8,000 dozen cookies, we are always one limp or show of pain away from hell. We need a cure.