katja
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So glad it’s all falling into place for you with this visit. You’ll be better at the hospital, there’s a coffee bar, restaurant and shop etc. I hope he can suggest some sort of treatment for your dad. My dad’s original whipple was cancelled because of the snow (among other things) and he had to wait a week. Because his stent had been in since December his bilirubin had fallen (although I’m fairly sure it wasn’t below the range for chemo). I don’t think it always prevents surgery, but obviously other health issues might. Another one of those things the experts don’t agree on.
My dad had had some mild kidney issues before his surgery which they did check out, but was fine. Blood pressure is now a problem for surgery I don’t think, assuming it’s controlled.
REALLY hoping for some ideas from Prof Lodge. He’s the best! If you happen to run into Mr Menon or Mr Smith tell them I love them.
-41 degrees c?!! I was outside Bradford Town Hall today with school waiting for prince charles to arrive and was moaning a bucketload that I couldn’t feel my toes. I feel a bit foolish now.
Andie, I know you will, but go and have a safe trip. There is accompdatipn at st James-holiday inn type thing that you could look onto. The whole place will lift your spirits.
I imagine they’ll do bloods, liver function and of course test bili, but prof lodge will know it’s high. My dad spent quite a time there pre surgery – so take stuff to do. I’ll ask my dad what other tests they did.
Fingers crossed for you all, let me know if I can help any way xWow how inspiring Julia! Thank you for championing cc. I’m from Bingley-did you get to know the two you shared a taxi with?
KateThis is great news, as Lainy has mentioned, surgery is the only chance for a cure. It’s wonderful that he is still a candidate for whipple after six months. My dad had a whipple in January (he had been jaundiced for quite a while and the doctor said ‘it’s a slow growing kind, so a few weeks here or there won’t make much difference’. Dad’s whipple was successful and he had a fairly event free recovery. He’s now back to work and living life to the full.
I wish your dad very good luck with the surgery.
KateHi tom
so sorry to hear of another dad of young children. You put me in mind of Rick.kamp, who was always full of hope and trying lots of options, although he hasn’t been around for a while. I think he had some abdominal ascites/metastases and quite a few chemo cocktails. You might trysearching his posts?
I can recommend andy’s supplement list, it’s so comprehensive and genuinely good for you.
Best wishes and so sorry you had to join us.I LOVE you attitude! You should be posting in the good news section. Keep blasting those tumours. I hate to hear of younger people but you and kris are right-buy enough time til a better treatment emerges. Very good luck with the liver transplant. You’ve been through so much already. What chemo have you had-your onc previously followed protocol with a ‘wait and see’ attitude.
Best wishes, KateThe babies, holidays and happy memories are the thing that give your dads the strength to keep fighting. We all want more time, to see more. They will be valuing every day and be so proud of you all for fighting alongside them.
Andie – my cousin is exactly the same, her second daughter has been so difficult right from day one (christmas day!) ‘if I’d had her first she’d be an only child…’ is a direct quote!
Me, I’m likely to experience a fall – my son slept 7 hours on his first night at home and cut his first tooth today without noticing! And I barely noticed being pregnant (through my dad’s diagnosis, whipple etc) and walked 3 miles over four or five stiles 12 hours before he was born. So any baby with issues or problematic pregnancy would have me reeling.
I’ll just keep on with the assumption that further offspring will be the same…
Andie,
I’m fairly sure that no amount of drinking could produce light coloured urine if no bile was getting through. It has to be draining somehow. What makes you say your dad’s bilirubin must be in the 400s? Is that just because it was increasing all the time? My dad’s was 450 initially, and he was itchy, pale stools, dark urine, and felt really really unwell. As soon as his stent started working some of those things started to improve. So I’d say your dad is draining some bili. Is he a dark yellow colour? Does he take creon? The doctor (who trained in US) told us that it was important dad take creon right from the diagnoses (regardless of whether his resection was successful). This helps with digestion and might be something to ask about your dad’s fullness.Marion, I’m rather worried about your view on the ‘one child policy’ – my baby, born April, has been the easiest baby you could imagine and a wonderful grandson to help my mum and dad through his illness. We are contemplating another child, but I was sort of hoping it would take after its big brother?! I will get a shock if number 2 doesn’t sleep through, or cries etc…
Kate
Linda,
I’m sorry that things were not as you’d hoped at Mayo. Hoping your next options are positive. You have such a hopeful way about you, there must be someone out there who can give you some good news. I love your tag/signature so much.
Is there someone who will help Jim with Kevin? Perhaps a friend or someone from Jim’s family? I hope there is someone who you can trust to keep an eye on them, maybe a god parent? I hate that you have to worry about whether Kevin will be ok.
Thinking of you lots and hoping your degree from the school of intuition comes through soon!
KateThanks for joining us Nancy, I’m sure you will be a big support to parents. I can’t begin to imagine how hard it must be to have a child go through it.
KateYes I’d really like to be involved in that. When were you thinking? Along the same lines as the plans for Canada?
Kate
