And so the 11th creeped up on me. I knew that we were due for a visit to the hospital on the 11th and I even knew in the back of my mind it was today. But somehow forgot to book Caitlyn in for a casual session at daycare for today. And then on Saturday late afternoon I suddenly realised that "oops, I totally forgot to book Caitlyn in". So this morning I phoned daycare and thank goodness they were able to have Caitlyn today. Just imagine us sitting at the hospital for quite a few hours and trying to amuse a busy 2 year old, I get tired just thinking of that...
Anyway, got Bianca from school early and we went through to hospital for our usual blood test and appointment with Bianca's doctor. Bianca's counts are okay, but they kept her at the slightly lower dose oral chemo for now and we are due back again in a month.
I learned a few things today.
I learned that when Bianca gets to the last day of treatment (if all goes well 11 September 2009) then she will need to visit the hospital for a check up and to get her port flushed every 4 to 6 weeks until we've reached the 6 month mark (when, if all goes well, they will remove Bianca's port). Then for the remainder of our first year off treatment, she will need to visit the hospital every 6 to 8 weeks. The following year it is every 3 months. The following year after that it will be every 6 months and the year thereafter once a year until she is an adult. They will need to monitor her to ensure she stays well and to address any possible long-term effects such as with her heart, her growth and her learning abilities. And then when she is about ready to leave school one day, they will meet with her and discuss what happened, they will discuss any potential consequences of the treatment if any, because effectively this will all be a faint memory or perhaps not even a memory then (certainly I can remember snippets from when I was very young, but not really that much). She may very well have concerns or questions and so when she gets to that age, they will discuss with her the road going forward. They will also discuss things she can do to live as healthy a life as possible because there will always be some risk that she may develop a second cancer.
I also learned that it costs $500 a night in hospital (and we don't go to a private hospital) when you are admitted. And Bianca's stayed in hospital for 113 days so far. That is NZ$56,500 so far - just for staying in hospital. A blood test costs around NZ$300 and I'm pretty certain Bianca's had more than 100 of those to date, so that is another NZ$30,000 just for blood tests. An echo costs NZ$500 an hour (and I presume part thereof) and Bianca's had 2 of those so far, so that is another NZ$1,000. A PEG shot (one of the chemo drugs Bianca got in the intesive part of her treatment) is NZ$4,000 each time (and Bianca had 3 of those before she developed an allergic reaction and had to get a different one that consisted of 6 injections - one every second day), so that is another NZ$12,000 right there. So only for that the cost of Bianca's treatment comes to NZ$99,500 (for those of you in South Africa that is ZAR502,855.20). That is not the cost of getting her port inserted via surgery, any of the other chemo drugs Bianca's been getting these past nearly 2 years, or any of the more than 30 blood product transfusions, or the CT Scan and numerous X-Rays, or the 4 NG Tubes, the steroids, time in theatre with general anaesthetic and the chemo they inject through a lumbar puncture into Bianca's spine or the bone marrow biopsies she's had or any of the other countless procedures, clinic visits and tests. It is not the oxygen Bianca's been on earlier on in her treatment or any of the treatment she received to help her when she needed emergency assistance after her bronchospasm and her allergic reaction to her one chemo drugs. And I've lost count how many times Bianca received IV antibiotics. I think it would be quite shocking to know the full cost of Bianca's treatment to date. It is such a blessing that we are where we are, because in all honesty there is no way we could have afforded this kind of money for our daughter (although no doubt we would have done everything we could have to try find the money from somewhere if we had to). I am so incredibly thankful we have one less thing to worry about. So despite what people might say (and yes I'm not a fan of the CCDHB) people here have a lot to be thankful for in the medical treatment they get (in comparison to some other countries out there).
You know just last year I followed the blog of a little boy who lived in the Phillipines and there they have to pay for absolutely everything. Every single blood test, every single time in hospital, every single test, every single blood transfusion, x-ray, you name it. Unfortunately this little boy passed away simply because his mum was unable to afford a much-needed blood transfusion (and it isn't as if you have plenty of notice to try and raise the money for it, if you need it now, you need it now). Please could you keep all these other people in your prayers and in your thoughts, people who tonight are worried and stressed about how they will be affording the treatment to try and get their kids better and to give a chance at life. It is so easy to sometimes forget how much we have to be thankful for and how small our problems are in comparison to some others out there.
Anyway, got Bianca from school early and we went through to hospital for our usual blood test and appointment with Bianca's doctor. Bianca's counts are okay, but they kept her at the slightly lower dose oral chemo for now and we are due back again in a month.
I learned a few things today.
I learned that when Bianca gets to the last day of treatment (if all goes well 11 September 2009) then she will need to visit the hospital for a check up and to get her port flushed every 4 to 6 weeks until we've reached the 6 month mark (when, if all goes well, they will remove Bianca's port). Then for the remainder of our first year off treatment, she will need to visit the hospital every 6 to 8 weeks. The following year it is every 3 months. The following year after that it will be every 6 months and the year thereafter once a year until she is an adult. They will need to monitor her to ensure she stays well and to address any possible long-term effects such as with her heart, her growth and her learning abilities. And then when she is about ready to leave school one day, they will meet with her and discuss what happened, they will discuss any potential consequences of the treatment if any, because effectively this will all be a faint memory or perhaps not even a memory then (certainly I can remember snippets from when I was very young, but not really that much). She may very well have concerns or questions and so when she gets to that age, they will discuss with her the road going forward. They will also discuss things she can do to live as healthy a life as possible because there will always be some risk that she may develop a second cancer.
I also learned that it costs $500 a night in hospital (and we don't go to a private hospital) when you are admitted. And Bianca's stayed in hospital for 113 days so far. That is NZ$56,500 so far - just for staying in hospital. A blood test costs around NZ$300 and I'm pretty certain Bianca's had more than 100 of those to date, so that is another NZ$30,000 just for blood tests. An echo costs NZ$500 an hour (and I presume part thereof) and Bianca's had 2 of those so far, so that is another NZ$1,000. A PEG shot (one of the chemo drugs Bianca got in the intesive part of her treatment) is NZ$4,000 each time (and Bianca had 3 of those before she developed an allergic reaction and had to get a different one that consisted of 6 injections - one every second day), so that is another NZ$12,000 right there. So only for that the cost of Bianca's treatment comes to NZ$99,500 (for those of you in South Africa that is ZAR502,855.20). That is not the cost of getting her port inserted via surgery, any of the other chemo drugs Bianca's been getting these past nearly 2 years, or any of the more than 30 blood product transfusions, or the CT Scan and numerous X-Rays, or the 4 NG Tubes, the steroids, time in theatre with general anaesthetic and the chemo they inject through a lumbar puncture into Bianca's spine or the bone marrow biopsies she's had or any of the other countless procedures, clinic visits and tests. It is not the oxygen Bianca's been on earlier on in her treatment or any of the treatment she received to help her when she needed emergency assistance after her bronchospasm and her allergic reaction to her one chemo drugs. And I've lost count how many times Bianca received IV antibiotics. I think it would be quite shocking to know the full cost of Bianca's treatment to date. It is such a blessing that we are where we are, because in all honesty there is no way we could have afforded this kind of money for our daughter (although no doubt we would have done everything we could have to try find the money from somewhere if we had to). I am so incredibly thankful we have one less thing to worry about. So despite what people might say (and yes I'm not a fan of the CCDHB) people here have a lot to be thankful for in the medical treatment they get (in comparison to some other countries out there).
You know just last year I followed the blog of a little boy who lived in the Phillipines and there they have to pay for absolutely everything. Every single blood test, every single time in hospital, every single test, every single blood transfusion, x-ray, you name it. Unfortunately this little boy passed away simply because his mum was unable to afford a much-needed blood transfusion (and it isn't as if you have plenty of notice to try and raise the money for it, if you need it now, you need it now). Please could you keep all these other people in your prayers and in your thoughts, people who tonight are worried and stressed about how they will be affording the treatment to try and get their kids better and to give a chance at life. It is so easy to sometimes forget how much we have to be thankful for and how small our problems are in comparison to some others out there.
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5 comments:
Just another reason to be glad that you live in such a wonderful country!
Oh my golly!! Thats an awful lot of money. I understand this all too well. Christophers treatment has come up to about R98 000 this year so far, not to mention the R250 000 from last year!! Thank the Lord for Medical Aid!! lol
Thank you for your beautiful updates. It helps to know that other cancer parents also go through these thoughts and strange calculations...he,he,he.
Lots of love and blessings
Lauren
Hi you are so right about some people and the huge burdens they have to handle. You have certainly had your fair share. You, Bianca and your family are also in my prayers. The road you have travelled has been a tough one. I also had a member of my family who also suffered for many many years with a lung problem so I understand a little of what you have had to handle. Bianca has probably taught you so much and I would like to say that she has amazing parents. We all try to do the very best that we can for our children and you have certainly achieved that. May Heavenly Father bless Bianca and her precious family EVERY day. With love from Felicity
Such a true update. Having a child with cancer is not easy and certainly not cheap! Everyday we are grateful that we have a Medical Aid that pays most of our expenses. Christopher's total costs for this year are at R96 000 and thats not including the R250 000 from last year. This amount does not include petrol, snacks, toll fees, special items/toys/food etc.
Nice to see that you are all doing well despite all the accounts!! LOL.
Lots of love and blessings
Lauren, Christopher & Family
www.carepages.com/carepages/christopherslighthouse
That is a huge amount of money Lea, thank goodness you are able to give Bianca such good care there. It's very sad to know that people out there are struggling the way they do, so many deaths could be prevented if it wasn't for poverty. Thank you for this post, it's very informative.
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