Emily's Journey

Not the best week in the Wooddin household this week! Charlotte and Luke have had the flu all week, both spiking temps of 39.5 degrees at times and Emily has been experiencing ongoing back and leg pain over the last couple of days. Any bony or muscular pain Emily experiences concerns me as prior to her initial diagnosis in 2010 her bone marrow was heavily infiltrated with Neuroblastoma and the pain in her bones was HORRIFIC! Whilst her pain over the last couple of days has not nearly been as bad as the initial diagnosis pain, I had her checked out by the Oncologist at the hospital today anyway. Her pelvis was x-rayed to look for any obvious signs of tumor activity and her reflexes, range of motion in legs and hips etc were checked. Nothing blatantly stood out in the tests, however to investigate further Em would need bone marrow aspirations and a CT scan (with an injecion of dye to highlight the Neuroblastoma). Emily does not want these so we will NOT be putting her through them. And at the end of the day, doing the scans will not change the outcome unfortunately . The constant guessing re what is going on in her body whenever she experiences pain or illness is very draining and completely messes with our heads, but if she doesn’t want the scans then we will have to just live with the not knowing and cope as best we can I guess. Her needs come first and managing any pain will always be a priority. I also asked about doing the urine test to check for catecholemine levels (the hormone excreted by Neuroblastoma tumors) as this is a non invasive test for Emily that she would happily do. Docs said that doing this test would not provide us with any useful information as the hormone could still be present in the urine from the tumor she had in her jaw in March this year. So basically there are no non invasive ways of getting information, so we continue with the dreaded guess work.

Ignorance is bliss while Emily is feeling well but when she has pain part of me needs to know the exact cause. Such a catch 22!  Ahhhh cancer sucks sooo much!  Emily is also extremely anaemic at the moment but her energy levels remain really good???  She is amazing. I spoke to the Oncologist re an iron supplement for the anaemia, and basically, if the anaemia is due to the Neuroblastoma invading the bone marrow then iron supplements would be of no use. I am guessing that Neuroblastoma is the cause given that she has the same diet as my other kids and they are rosy cheeked and healthy looking, but without all the examinations I will never know for sure……???

So after the visit to the hospital today I feel like I am no further ahead (and cancer mums never have “peace of mind”) however for now the leg and back pain is being put down to sciatic nerve pain caused by Emily trying her hardest to walk on flat feet and over stretching the the sciatic nerve over the last few days!! Needless to say she is back up on her tip toes which is the least of our worries. I will be keeping an eye on her pain levels over the next few days and we’ll go from there. We have many a cocktail of pain reliefs including morphine for over the weekend should her pain worsen. She is watching a movie and singing along to it as I write this so hopefully sciatic pain is the cause of her current complaint and the pain will ease up!! WHO KNOWS??????

P.S. Just tucked Jack into bed and he said to me “Why did Emily get cancer?” And I said “Nobody knows why people get cancer Jack” and he said ….. “I think Emily got cancer because I hit her with a pole when I was 3” …..Not only does it mess with our heads as parents but it upsets Jack too. This statement came completely out of the blue. I have not even mentioned cancer to him for a very long time and he is unaware of what is yet to come… or is he more aware than we think?! Needless to say I completely reassured him that he was NOT to blame for Emily’s cancer. Poor wee man. 

Right now that I have had my rant I am off to bed after an exhausting week (thanks Mum for all your help with the kids this week!). Hopefully next week is more pleasant : )

Kath