Well we have started another round of the good stuff and already the pain is kicking in. Oh how I HATE vincistine. Scotts counts were high again today at 2245, and as I suspected, they are planning on yet another chemo increase if they remain that way over the next few weeks. I believe he is close to the upper limit on how much they are allowed to give. Whilst I understand the need to keep the anc low it is upsetting that he has to be pounded by additional chemo. All these toxic drugs can have lifelong effects and so each increase raises my anxiety.
His platelets took a hammering which ofcourse has spooked the hell out of me. The wonderful Nurse Vikki (again!!) told me to look into her eyes whilst she spelled out - D O N O T W O R R Y!!!! If only it were that easy.
I was SO relieved to recieve his x-ray results - no signs of anything abnormal. This is very, very good and means the steroids have not caused bone density damage. It still may happen but for now, all is well.
So we have another steroid/vincristine bitch of a week ahead and I am thankful. Unfortunately the worst day of pain will fall on Scott's birthday. We'll just have to do our very best to make it perfect. Stick the cancer in a drawer out of site and refuse to mentions it's name. It still seems surreal. My baby has cancer?
Thanks for checking in and have a great weekend.
Oh and a ps for Ben ... thanks for following Scott's progress and no, he hasnt been prescribed anything to help his bones. I do give him tums, yoghurt and as much milk as he will tolerate (which is not a lot) almost every day, for the calcium benefits. I hope that this will be sufficient. I will be mentioning this to the docs though. Thanks for your advice. :)
One more ps for April ... my emails to you are bouncing back and I think that yours to me are being blocked. I may regret doing this on the internet but here is my phone number - . Call or text when you get a chance. Hope Logan is doing good and we'll see you soon. :)
Last ps I promise ... It was on the BBC today that childhood cancer survivors are more likely to become smokers, I guess that whilst this is sad it is also understandable and no big shock. It is becoming clear to me now how much Scott is starting to become rather blase where medicines are concerned and also how he relies on drugs to keep him stable, drugs such as ativan, paxil (which doesnt seem to work all that well) and tylenol/codeine. This is a worry. Whilst he is incredibly clever and sensible I can absolutely see how he could/survivors may feel a pull towards risky behaviour. Perhaps due to long term depression or stress or maybe because you have an increased sense of being "untouchable" or invincible. Something most young people feel, yet possibly amplified among survivors. You kicked cancer's arse the first time and if need be, could do it again. When you spend 2-3 years being pumped full of toxins and "stuff to make you feel a little better" whats a little cigarette/joint/cocaine between friends??!! Whats the next big thrill??!! Or maybe, what is simply going to keep you stable? Or, what is going to take away the fear of it returning? If anyone has an 'addict' gene it is most definately Scott. I will be like a damn hawk. The doctors already call me 'hover-mother', well they aint seen nothing yet!! Hopefully my training and years as a youth and special needs worker will stand me in good stead. I hope so!! I think I may need ALL the help I can get.
Scott & Sunny
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4 comments:
Glad there is no bone density damage Steph - but as you say it's hard that Scott's birthday will fall on a rotton day of his cycle.
As for addiction - I know there are a lot of things out there a lot worse than cigarettes but to date he has been so anti smoking it would be hard to imagine him going down that road. It really is hard to try to comprehend what he must be thinking about himself and the world.
Tell him I love him and am always thinking of him - and hope you all manage a little pleasure in what is going to be a bad weekend.
love nana/mum
Tums are a good source of calcium. The yogurt is also a good source of calcium, and yogurt also has additional benefits to the immune system. Yogurt has Lactobacillus casei within it, which helps boost the immune system. Wishing Scott an amazing birthday!
Benjamin,APRN,MA
I am so glad to hear that there is no bone damage. Dark leafy greens also help with calcium intake.(i just know this somehow)
Hang in there Scott and have a happy birthday.
Nina
Happy Birthday Scott!
I know she may not be as thrilling as (insert name of bloody video game) but you ought to consider your outstandingly lovely, strong and otherwise fantastic hottie of a mom to be the greatest gift ever. Derry and David are none too shabby either. But I do hope you got some (insert current synonym for cool) new games.
Oh and Steph. I've written your cell number on several bathroom walls. So you should be getting some interesting calls shortly. : )
Lots of love to you all
xoxoxox
S.
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