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Wow ..... I wrote this once already and it got deleted so - here it goes again. Nicky was scheduled for surgery to place a shunt this Friday. Monday he woke up and felt warm, I slept next to him on purpose...first time since high dose chemo 2 1/2 years ago he had a temp. So I text my Pediatrician through the day. Mid afternoon temp hit 100.7 She asked to see him to do labs and check him for the Flu. I am beyond grateful that my sons doctor trusts me enough to allow me to draw Nickys labs at the clinic from his port. He was tested for the Flu and came up positive for Flu A the easier of Flu's to fight. well Monday night end by checking him all night and no fever we went all tuesday and no fever - we thought we dodged it! Around 4:40am Wednesday morning he coughed and it woke me up sounding croup like, I leaned up and he was burning up - this is a moment when you dont do a temp you act, I screamed for Nick- ice packs and stripping him down with cold wet towels and advil. The pre op nurse said no advil so we knew we had to get him well and not chance anything and cancel the surgery. So I called the nurse and told her -I was not willing to chance it .... his new surgery date is next Friday Feb 1. at 11am.so Nicky and I will fly in the day before surgery to go to clinic and see our neurosurgeon Dr. Boop. I probably failed to mention that his ANC is 1300 and was 1000 when I drew his labs - this is low - his body is over heating fighting to fix the virus battling him. Tamiflu is a shortage but he did a a few doses under his belt before no one could get it.
While all this was happening I spent last week getting all Nickys records to Dr. Yock in Boston, since she sees the most pediatric proton children in the world. She said that you must take into account all the treatment that Nicky has had, clinically how he looks and is acting. I bluntly asked her have you seen this before she said not exactly like this - yes I see edema with children that have had this much treatment and I think the shunt surgery is the first step because over time his ventricles are slowly increasing. She thinks that there is radial changes in the pons area and that she has seen inflammation when this much treatment has been done. She also thinks scar tissue from healing could also be a cause and so this surgery is quick start to see if it will resolve both issues meaning the spine inflammation too. Only time after the shunt is placed will tell us if it is working with all areas of concern. She said the fact that he has no symptoms for any alarming issues is a great thing. I said, should I be worried.... she said as a Mom i know you are going to worry either way but she said I would not worrry about this being a secondary cancer. He has no signs and in that area you would see clear signs and it doesnt add up with age and being so early out from radiation. ( This is where I am guessing - should I tell you I am afraid .... help me build up my faith? should I not tell you and act like its all fine - because it could be ... ? ) Honestly I don't know the right answer so I will say pray please ..... I can't sleep, I wake up with thoughts I want to erase and at the same time I want to just savor him and not leave his side ...... this seems wrong .... but this is in Gods Hands ... not mine.
While it was comforting to hear all the doctors tell me not to worry, nor do they think this is a secondary cancer - anyone that knows me knows I deal with Nicky stress poorly, hes my baby. So I will fix myself on the word of God and scripture that helps me ...when fear tries to steal my days.......
This wait till the next scan which is March 11 at 7:45am feels like a long wait and a ot of praying that these changes just go away and the shunt will in fact do what all the doctors are hoping it to do. I will update again if I can before or after surgery.
Thank you all for you love and support - and most of all your prayers - sometimes we get a message from you all and it comes at just the moment when we need it most. Thank you for loving our boy!