So we went to Westmead to get our pathology results yesterday. I was nervous and got sick on the way down to westmead - as I do almost every trip, and we have to pull over and I need to sort myself out and take anti nausea medication so we can keep driving. You would think by now I would have learned my lesson and Id take them before I leave but my brain tells me oh, your fine, and confident so you wont need them this trip but my subconscious must be having a secret panic attack. Thank heavens Simmy drives as it would be most difficult if she didnt. I will admit that I was anxious to hear our results yesterday. I had a long list of questions for both our oncologist and our surgeon. Its been really challenging since surgery for little Dasha. She has been is so much intermittent pain, and has had unbearable itching from the pain meds, and as we are now heading for our third week post op, I needed to know how long we would have to see her go through this. And sleep - we need sleep and some nights we are just up with her for hours as she struggles. Other times of the day she appears perfectly fine...... And only occasionally flicks her back or wriggles her shoulders. When she is fine (which is now 22/24 hours a day) she is that usual bundle of deliciousness. Funny, and cheeky and joking around and we are laughing and playing, but when she is struggling she is almost in a panic and so difficult to console, even though she isnt off my shoulder or out of my arm (which is our safe place - where she is always at her best in times of stress. The pain incidence have reduced from 1-2 two to five hour episodes of pain a day, to 1 episode of an hour or two - no more itching as of yesterday, but very specific spinal pain. I cant tell you how that makes me feel. I will be pleased to see this come to an end in the coming days...weeks? Please pray specifically for this spinal pain to melt away for Dasha. So the last thing we were told was 97% survival rate..... Get on with your life, no MIBG uptake from the tissue remaining prior to surgery, you have ended your treatment where you started (hospital ward and bed location wise) - why are you still here? - go home and enjoy life. We will scan her every three months until she is 5 to make sure we dont see anything grow back - 97% chance it wont. Hurray! That has not changed. No more chemo says our oncologist as we walk into his office yesterday ....... Phew but of course not - her cancers gone, right - - right? The chemo shrunk it 75%, and then they took 95% of what was left. Biopsy results conversation. The removed tissue contains a combination of neuroganglioma cells (matured, frozen inactive cells) and neuroblastoma cells (cancer cells) I burst into tears. Its not what I want to hear! Im horrified! This is quite normal, you dont need to cry says our squirming, now uncomfortable at my reaction Dr. We expect some of those to just convert over to matured cells over the next month or do. This is what we expected. So we will do a base line, post op MRI in two weeks, then we wait and watch - scan her every three months to make sure it isnt growing back. Im blubbering questions at him at this point, feeling some obligation to get my shit together because I shouldnt be crying so I hold my breath as I speak, pretending Im ok with the fact there is still cancer in my tiny babies body! Dr Stevens continues - Its more of a risk to her to do more chemo, than it is to wait and watch, you would have to be extremely unlucky to have it bounce back, very extremely unlucky. Im thinking - panic - I AM extremely very extremely unlucky!!!! Im talking to you arent I, Mr childhood cancer specialist!!!!!!! So basically, they watch her closely until she is five as they were always going to do. As this cancer is cancer of the nervous system, and nerve cells only develop in the first five years of a childs life, so they switch off at five and stop growing, including the cancerous nerve cells ... So when she turns five we can finally pop a bottle of champagne. Until then - 3 monthly scans and - prayers and - a choice! I said to Simmy afterwards - how do I ever leave her?, waste a day/minute/second away from her?, send her to kindergarten/school?, let her sleep out of my reach?, spends half my life working rather than being with her........? And Sims answer was exactly what I needed to hear, and what I would advise any of my clients..... She said Because its not about you! She needs to have a normal life, she needs friends and to experience the joy of everything kindy and life has to offer and because nothings changed being told this information, her odds are as good with these cells in her body as they were when we thought the tissue only contained no neuroblastoma cells. This is true - and they said were lucky, shes done great, yahoo its over, go home and get on with your life - chances are those cells are asleep and will stay that way until shes five and then you have made it. So on that note - while nothing has changed prognosis wise, being she has the same chances of bounce back (reoccurrence of the tumour) as she would if they had removed it all - which is exceptionally exceptionally low, everything has still changed. We cant formally declare her cancer free..... She will live with her disease now, in a stable, sleeping state, and we get on with our life in much the same way as we would have if she was declared no evidence of cancer. So we have disembarked the nightmare train and been herded onto the life train with a catch - your choice of daily destinations, polite service, regular maintenance stops and a slightly unpredictable driver who most likely wont, were extremely confident he shouldnt, but just might, crash you into a mountain side..... But sit back, take a breath and enjoy the view as we casually chug you through life, and just trust that driver is in a stable place. Ive cried a lot yesterday, so has papa, we were up with Dasha in pain again last night.... Pain in the spine up mumma until I hit that ouchy point in her vertebrae and rub. That doesnt feel as un scary now..... Now my mind wanders to uncomfortable thoughts. Its going to take some mental willpower to trust were truly going to be ok. It will most certainly be a choice. A choice to provide a beautiful, happy, stress free home and life to a vibrant, enthusiastic, brave and amazing little girl. Already, in the light of our new day as I resume writing this update, I feel better, more like I did 2 days ago, as confident as our oncologist that they have this asleep and Dashas life is no longer going to be under threat. I ask for prays. Endless prayers that it never grows again, that she fully recovers from her treatment, that her bloods balance out again, and that her life from here out is normal. Pray also for Diego and myself to feel that to the core of our being, and feel at true peace with that belief. Dasha is funny and snuggly and kind and amazing. We love her so much. Shes the most amazing kid. She is so funny, and cheeky, and normal - outside her post operative pain..... So we shall now prepare for her central line removal - and the Christmas season..... And life! Treatment has finished..... Healing time begins. Thank you to beautiful Rebecca Tait for Dashas amazing goodie bag yesterday.... She is in love with her cap with that long blonde plait to her bum..... She had them alllll fooled! Hysterical!
Posted on: Fri, 10 Oct 2014 00:24:21 +0000
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