Calling all triple negative breast cancer patients in the UK
Comments
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Hello Michael, We have missed you over the festive season.
I do hope you are well and that 2014 will be a good one for you.
Keep in touch.
Fond thoughts, Sylvia.
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Hello Jenn-UK,
I do hope you are now feeling much better now after your surgery and do hope that 2014 will be a good year for you.
Thinking of you,
Sylvia.xxx
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Hello Carolben,
I am concerned that we have not heard from you for quite a while. I do hope you are making good progress. If you are still viewing please let us know that you are fine.
Fond thought,
Sylvia. xxx
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Hello big leggy(Sandra),
I hope you are making good progress after your last session of chemotherapy. I hope 2014 will be a good year for you.
Fond thoughts,
Sylvia. xxx
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As ever Sylvia, you are so thoughtful!
I wish you and your family all the very best of health and happiness for 2014... :-) xx
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hi Sylvia
No I missed the displays on the tv....we used to have a really good display on the river Mersey down by the Albert dock on New Year's Eve, we used to go down every year but due to cut backs they scrapped it,
I love all stand up comedy and John bishop is my favourite....I've met him a few times and he's lovely in person too, I've seen him on every tour he's done, also my sister has already got me tickets for this years tour for dec 18th so I'm looking forward to that
I havnt read about the trials for radiotherapy during surgery...I had a lumpectomy and it would of been something I would of been interested in but my hospital mustn't be part of the trial
Take care
Gill
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Hello Jackpot (Gill)
I was interested to
know that you love all stand up comedy and that John Bishop is your
favourite. He is probably mine as well. He is so charismatic and I do
love that twinkle in his eye. I like to watch Live at the Apollo and
I am amazed at how one man can stand in front of such a large
audience and just talk. I do no know how these comedians remember
everything. I also like Michael McIntyre. He is so energetic, even
hyperactive, but he has me in stitches. Lee Mack is another of my
favourites and again there is that twinkle in his eye, which is
rather hypnotic. Another is Tim Vine, his humour is a bit different,
but his puns are so clever. I find that it makes me feel so good to
laugh. I am sure you will enjoy your next show with John Bishop.I think this latest
news about doing radiotherapy during surgery is something to bring up
with oncologists as it could be that it will go through pretty
quickly with NICE. If I were you I would have a read of the article
that I saw in the Daily Mail on Tuesday December 31st
2013. The title was 'The one-stop breast cancer op that spares women
weeks of radiotherapy' and the subtitle is 'Me and my operation –
targit therapy for breast cancer'. The article is by Diana
Pilkington. The paragraph heading is 'Women with breast cancer could
soon be spared weeks of radiotherapy after a major study found that
giving it during the surgery to remove the tumour is just as
effective. Rita Rose, 64, a retired Civil Servant form Highgate,
London, underwent the one-stop treatment as she tells Diana
Pilkington'. The article is dived up into two headings, The Patient
and The Surgeon. It all makes interesting reading. The link to this
article, which I think everyone should read, is:The word Targit =
Targeted Interoperative Radiotherapy. The article is very easy to
read. The woman in question accepted to go on the trial and was lucky
enough to be one of those who got the treatment in the trial.With this treatment
patients get a lower dose of radiation than with conventional
radiotherapy but it is more concentrated on the area that needs it.
There are fewer side effects, such as heart disease, because the
radiation does not reach other organs. By having this all done in one
sitting, it saves time and money. The trials began in 2000. the
latest results, published in November 2013 in The Lancet, show
comparable results with Targit and external beam radiotherapy. Please
read for more information as the surgeon explains exactly what he
does. He points out that the tumour must be no bigger than 3.5 cms,
so would be no good if a patient needs a mastectomy.This method has become
standard treatment now in many hospitals in the US, Germany, Denmark
and Italy. It is expected that NICE in the UK will recommend that it
be used for treating breast cancer, which will mean that all breast
cancer centres in the UK will use it. I hope you will find this
useful information.Another article I
noticed in the Daily Express on Thursday January 2nd 2014
was that the TV sports presenter on Sky has revealed she has breast
cancer. She is just 46. I am sure that all of us on this thread wish
her well. The article can be found at:On the same page the
following headline caught my attention. 'Nano-jab 'reverses'
disease'. The article starts with 'A revolutionary treatment could
'reverse' cancer, scientists say.''The therapy could save
the lives of millions, particularly women with breast cancer, with
just an injection'. This is a short article but well worth reading.
It is by Sarah O'Grady and she explains that the jab emerged from
efforts to identify genes that drive the disease. The gene most
strongly linked HoxA1. They blocked it, halted malignancy and
returned the cells to health with nanoparticles injected through the
nipples of cancer-prone mice, which stayed healthy while others
developed cancer. Dr Jim Collins from the Wyss Institute at Harvard
University in the US said 'We are hopeful that our approach can help
uncover new drug targets for many hard-to-treat cancers'.Gill, you have an
important week coming up with appointments on the 6th and
7th. I shall be thinking of you and wishing you well. Just
think of John Bishop, see his smile, hear his voice and you will be
OK.Fond thoughts.
Sylvia xxxx
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Hello everyone
I am just popping in to
say that I have just bought the latest issue of What Doctors Don't
Tell You. It is of course the January 2014 edition. It is full of
useful information and it will take me sometime to read.I hope you are all
having a good weekend.Sylvia
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hi Sylvia
I was interested to read about the radiotherapy during surgery I would of definitely have opted for this if it was available but like always we seem to be a couple of years behind with regards to the latest treatment, I'm not looking forward to daily trips for five weeks but I suppose it's a small price to pay...
I read the article about Jacquie Beltrao, there's so many women being diagnosed lately or is it just that I'm noticing it more now since my own diagnosis, I'm ashamed to say I never had much time for woman's health issues before....I led such a busy life
Going back to stand up comedy...the comedy club we run in liverpool city centre called hotwater comedy is going really well...and my eldest son ( the taller of the two in the pic I put on before Xmas ) is a stand up comedian and he's quite a character....people are always surprised when they hear his other jobs are a manager for Royal Mail and a maths tutor at liverpool university I don't know how he fits it all in....I often go the comedy club as it cheers me up and I have become good friends with a lot of the comedians....we've even had a few famous faces turn up to watch like stan boardman, johnny Vegas and chrissy rock
I didnt see the article on the nano jab but it would be interesting to see if a simple injection could be the future of cancer treatment....was it still at the trial stage?
I will be thinking of John bishop and anything that makes me smile during my appts this week especially my MRI scan as I am not looking forward to that at all
Take care
Gill
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Hello Gill
Just popping in to say that the nano-jab has apparently just been trialled on mice. We have to hope it soon goes to trial on humans.
I found this link:
http://www.pressdisplay.com/pressdisplay/viewer.aspx
I found your post fascinating and I shall answer in more detail later.
Fond thoughts.
Sylvia xxxx
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Hi everyone,
I am a bit behind on the posts but I am off to Chelmsford tomorrow so hopefully I can do some reading.
I wish everyone a healthy New Year
Michael
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Hello Jackpot (Gill)
I do think there are a lot of women
being diagnosed lately with breast cancer. It is probably a mixture
of reasons. One could be that with the mass screening through
mammograms, more and more women are being diagnosed with very small
tumours or even calcifications, like DCIS and LCIS. I know there are
differing views about these small things being picked up and one
school of thought seems to be that they may not have caused any
problems, but who is going to take that chance and are the mammograms
giving false positives? I know that a friend of mine, a retired
nurse, and one who has been involved in cancer, believes that DCIS is
not strictly cancer. I feel there is a connection between taking the
birth control pill, especially for a long time, and developing breast
cancer. The pill is quoted as a risk factor. Then, of course, there
is lifestyle, too much junk and processed foods and this seems to be
getting worse, and the environment. There is also a sedentary
lifestyle and being overweight. I was shocked to read that 62% of the
UK population is overweight or obese. I think there are too many
people who cannot be bothered to do simple things to help themselves
and prefer to pop pills from the doctor! Eating healthily should be
our number one priority, as well as taking responsibility for out
health.I was very interested to know that you
run a comedy club in Liverpool city centre called Hotwater Comedy and
that it is going well. Your eldest son does sound quite a character
and I was interested to know he is a stand up comedian. I can quite
understand that he must be very busy with three different jobs going
and very different jobs. I am sure it must be doing you a lot of good
going to the comedy club and making friends with comedians.I have heard of Johnny Vegas but I do
not know Chrissy Rock or Stan Boardman.I do hope all has gone well with your
marking out for radiotherapy and that all will go well tomorrow with
your brain scan.Are you watching the new version of
Sherlock Holmes on BBC1? I do find it very interesting and
entertaining.Are you still eating bitter apricot
kernels? I have been eating them since June 2005.Fond thoughts.
Sylvia xxxx
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Hello Michael
It was nice to have you back on the
thread.I hope you have a good time in
Chelmsford. It is, as you know, a town that Raymond and I like very
much and we would be interested to know of any changes. We have such
happy memories of that town.Wishing you all the best.
Sylvia
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Hello Gill, again
I did read recently that the US had the
highest number of cancers in the world. I know that it is a big
country with a big population, but this was calculated per 100,000.
Ireland was number 2 and the UK was number 3. That is not very good.Best wishes.
Sylvia xxxx
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hi Sylvia
I've just got back from a long day at clatterbridge after the first two scans it seems they cant do normal radiotherapy on me because my heart is too far over to the left and in the way and they can't avoid radiating my heart...they said it would cause permanent heart damage....so I've got to have it done another way that's only been available the last year or so were they will avoid my heart,
the only downside is I've now got to have all my radiotherapy in clatterbridge now which is a 32 mile round trip everyday for five weeks because fazakerley which is up the road from me doesn't do this particular type of radiotherapy so that's a bit of a pain....
I havnt been watching Sherlock Holmes but a few friends have and were saying how good it was....I might try and have a look at it
I stopped eating the kernals during chemo because of he taste changes they tasted revolting and I didn't want to be put of them for good but I'm going to start eating them again as soon as treatments over,
That's a bit scary to know we're the third worst in the world for cancer isn't it
Take care
Gill
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Hello Gill
Thank you for your post. I am wondering how they are going to do the radiotherapy.
I shall post later when I have finished my morning chores.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot (Gill)
I was sorry to read
that you cannot have the normal external beam radiotherapy because
your heart is too far over to the left and would get radiated with
this type of radiotherapy. Thank goodness for the scans that have
shown this because you would not want permanent heart damage.I cannot think what the
other way of doing it is but if it has only been used since last year
it is good that there is an alternative that will avoid your heart.The only other
radiotherapy with which I am familiar is brachytherapy which I think
is a more targeted therapy and is used for prostate cancer.I shall be interested
to know what this radiotherapy is.I can understand about
the downside of all this because of the travelling involved on a
daily basis over five weeks. That will be very tiring. All I can
think of to help with this is to ask for a hospital car and driver.
There are two people in my apartment block that are going to Exeter
for chemotherapy regularly and have hospital cars and drivers laid
on. I told one of them about the charity Hospiscare and I think that
was organised by that charity, but I think the other person is
getting a car and driver organised by the hospital in Exeter. Exmouth
to Exeter is a 24 mile round trip. I did that for three weeks in
June/July 2006 during a heatwave and found it tiring.I do hope everything
will work out and that all of this will soon be behind you.I do hope the brain
scan will go well today.I think you will find
the Sherlock Holmes very interesting, clever and entertaining. The
actors are brilliant.I can understand why
you have not been eating the kernels. You can always grind them up
and eat them with some muesli or sprinkle them on some yoghurt with
some chopped raisins. I tend to have Dorset Cereal muesli, the one
with chopped Brazils, almonds, hazelnuts and dried fruit with
unsweetened fresh soy milk, but I have the bitter almonds whole with
decaffeinated green tea. I also have plain unsweetened soy yoghurt. I
buy both the milk and yoghurt from Tesco's in their Free From
selection.It is frightening to
know that we are not doing brilliantly when it comes to the
statistics on breast cancer. I think it is largely the western
lifestyle.Yesterday I read the
Independent and the Guardian and picked up on the same article in
both. The one in the Guardian was a lot more detailed so I
concentrated on that one. It was on page 7 and entitled 'High rate of
cancers linked to inactivity' by Haroon Siddique and the article
starts off by saying that women in the UK have the 10th
highest rate in the world for cancers linked to a lack of physical
activity, research has found.It goes on to say the
estimated number of diagnosed cases of bowel, breast and womb cancers
in 2012 was 78,935, about 12,000 of which could be prevented if
people were more physically active, according to scientists.The number 12,000 seems
small to me compared to 78,935 but it is still 12,000 that could have
been prevented according to scientists. What I would like to know is
why did the other 67,000 end up with these cancers.According to the
article, the percentage of women who met the guidelines on daily
exercise was only 36%. The guidelines for activity are to do at least
30 minutes of moderate activity five days a week. I would think we
could all do that.Body fats are also
related to these cancers. Once again, we are back to lifestyle.France was 5th
in these statistics and the US 8th.The link to the article
is:http://www.theguardian.com/society/2014/jan/06/uk-women-bowel-breast-womb-cancer-lack-exercise
There are some comments
on this at that link. The one I like was:“This is like saying
that stupidity could be prevented if people were less stupid.”All of this should give
us food for thought. That will be Healthy food of course!Thinking of you.
Sylvia xxxx
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hi Sylvia
The technique they said they are going too use on me ie called DIBH (deep inspiration breath hold)
The idea being it expands the chest wall and moves he heart and lungs away from the area or be radiated but because the radiation can only be done whilst your holding your breath the machines cut out if you breathe and it's all done with computers and is quite technical and hard to understand but it does seem to be my best option and worth the extra travel
Im not going to take up the offer of hospital transport because with the pick ups and drop offs and waiting for everyone to finish their treatment it turns out to be a very long day....here's a link that explains more about the type of radiotherapy I'm getting you might find interesting
http://www.royalsurrey.nhs.uk/adx/aspx/adxGetMedia...
I'm going to try and get back to a healthy diet soon I have let it slip lately and I'm joining a gym and starting swimming soon to try and get back in shape before I go back to work, being very active before I do feel I've become a bit lazy but I think I can forgive myself after everything I've gone through the last few months but I am looking forward to getting back to normal whatever normal is these days
Take care
Gill
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jackpot - I did that special breath technique for my radiation and according to what the technicians told me, it moved my heart and lung out of the line of fire!! I had no problems, so I am sure you will be just fine. Start practicing holding your breath! How terrible that you have that long journey every day for your treatments - that will make it a very long treatment. Hang in there.
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hi adagio
That's good to know...I hadn't heard of anyone else having radiotherapy done this way...I think it's quite new over here..but it's good to hear that it all went well with you, I'm not looking forward to the travelling though but I suppose it's a small price to pay to get rid of this disease once and or all
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Hi Sylvia, Hi Everyone!
I wanted to wish everyone a Happy New Year and best wishes for a very healthy year. I pray that 2014 is kind to all of us! I just celebrated my 2-year healthy victory on January 4th, had my Onc appointment and everything is normal. Stay strong, eat healthy, exercise, treat yourself, laugh and love!
) I hope to catch up and read all of the nutrition, research and collective medical information that you all have been posting. I really enjoy all the new information that you share. My routine is the same as before: 8 hours exercise a week, kale/blueberry smoothie each morning, salmon, veggies, etc. December of course came with a few chocolate splurges ... okay - more than a few chocolate splurges, but all is back to modified behavior once again! I just bought a new book. It's an older book, but had a lot of great reviews, and seems like a good read. It's called: The 22 (Non-Negotiable) Laws of Wellness - Feel, Think and Live Better Than You Ever Thought Possible, by Greg Anderson. I also bought the Kris Karr book, Crazy Sexy Diet.
To everyone going through treatment or newly diagnosed, you are stronger than you imagined, and be proud of yourself for what you have thus far accomplished. Don't be too hard on yourself, don't try to please everyone and don't overdo it. This time right now is about you - take time to focus on your treatment and do what is best for you. Know that everyone is behind you 100%, whether they express it to you or not, family or friends - everyone is so proud of you and praying for your speedy recovery.
xoxo
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inspired - good to hear from you and glad that all continues to be well with you. Your lifestyle sounds very healthy - I hope it serves you well. We all need all the help we can get! Congrats on the clean bill of health - may it continue!
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Hello Jackpot (Gill)
Thank you for
explaining about the technique that is going to be used to do your
radiotherapy. I had never heard of Deep Inspiration Breath Hold
Radiotherapy and I have just been reading about it in the information
on the link that you posted. I am now wondering how many women have
had this kind of radiotherapy. Do you know when you are going to
begin your treatment? You must be keen to get it all over with.When I was talking
about the hospital transport I did not mean the mini-bus that goes
around picking up patients. My friend here goes in a private car
driven by a volunteer from Hospiscare. She is picked up at her door
and driven straight to the hospital. The same for the other
neighbour, but I think that private car is driven by a hospital
volunteer driver.Give yourself time to
recover from all this treatment before you get into too much
exercise. Gentle walking is good enough and swimming should be fine.
I can understand that you want to get back into shape before you go
back to work. You will find that you will gradually pick up after
your treatment has finished.Wishing you well.
Sylvia xxxx
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Hello adagio
Just popping in to say
hello. I was interested to know that you had had the same method of
radiotherapy as Jackpot is facing and that all went well for you.
This will be encouraging for her.How are things going
over there in Vancouver? I cannot believe some of the bitterly cold
temperatures in the US. Here it will just not stop raining and there
are floods everywhere.Sending fond thoughts
your way.Sylvia xxxx
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Hello InspiredbyDolce
(Debra)I was so glad to find
you back on the thread and am really happy for you that you have now
celebrated two years out. Well done! You must be so glad.I am sure we all
appreciate your words of wisdom and you know that I share your
feelings. We all have to stay strong, do our bit to stay healthy by
eating properly and exercising and we all need treats, definitely
need to laugh and love. We have to banish pessimism and look forward
to 2014 with optimism and hope.You are an inspiration
to all of us to look after ourselves.I was interested to
know about the book you have just bought and I must say the title
sounds very interesting. Both books that you mention sound
interesting. I look forward to your telling us about them.Keep up all your good
work.Fond thoughts.
Sylvia xxxx
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Sylvia - I am actually in Hawaii right now enjoying some warmth and lots of sunshine - very soothing and healing to the body. Lots of walking on the beach and swimming daily. Yeah!!
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Hello adagio
Lucky you with all that sunshine. It sounds as though you have joined the snowbirds! You will be getting plenty of vitamin D and I shall think of you as I faithfully swallow my softgell vitamin D supplements every morning in wet, damp and sunless England.
Thinking of you.
Sylvia
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Hi Sylvia
I am just back from Chelmsford which was delightful as ever. Did you know it has been rated the 10th best place to live in the UK? Nothing has changed much there but they are starting major road works at the Army and Navy.
I have another interesting Irish radio broadcast for everyone to listen to. I heard it last week and it was thought provoking. I will paste the into and link below. It would be interesting to hear your views.
Michael
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It seems that the forum doesn't allow HTML so I will try another way
Now we all know that when you cut your finger or get a bite or a skin infection - your body will react with red skin and swelling, that's a normal inflammatory response that’s all about healing. However, when inflammation goes rogue it can have catastrophic effects in the body - it's now being linked to diseases ranging from cancer to atherosclerosis. Keelin spoke to Professor Luke O'Neill, who leads a team from Trinity College that is at the forefront of international research into the inflammatory response. The team are looking at how it works and how to use what they ...
http://www.rte.ie/radio1/today-with-sean-o-rourke/.
I think I just made a mistake in the previous post
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Good morning all.
Before Christmas I posted about a 14 year old boy that was expected to die before Christmas day. He has cancer but is not suffering from it at the moment. He had a bone marrow transplant which did not work which means he will die.
Deryn was told he would survive for approx 3 days. he is now on day 30.
Deryn and his family had come to terms with the fact that he was going to die within a few days
Well it is now the 10th January, he is still alive and getting better.
The doctors have said what's happening to Deryn is impossible.
I have included the link below to their Facebook blog but have also copied and pasted their last blog
https://www.facebook.com/DoEverYthiNgFoundation
312 days since first donor transplant
78 days since final Deryn transplant
29 days since we moved to the hospice to start end of life care...
...
I haven't updated for a few days, mainly because I can't get my head around what has been occurring but also because things have changed so rapidly and so dramatically that I'm struggling to keep up at all - oh and also because we were at a Russell Howard and friends charity gig last night until midnight
The last post I wrote, I spoke about how Deryn had somehow managed to heal his own fingers - this in itself seemed to be impossible given that he has NO immune system and NO white cells. The body cannot heal without white cells and neutrophils.
That is a scientific fact - apparently!
So on New Year's Eve, Deryn had some platelets as they were a measly 1, they had been 1 for quite some time and as we know, he never incremented with a transfusion but he did get some relief symptomatically (his bruising would disappear)
Dr Barbara came to see Deryn on Saturday and was flabbergasted when she saw his fingers, she called for another blood test and that was taken away.
Now this is where is starts to get a little, no sorry - VERY confusing!
The blood results came back on Sunday morning that Deryn's platelets were 7!
Ok so 7 isn't great, they should be between 150 - 400 but 7 for Deryn is great because we've not seen them above 1 for weeks.
How on earth had he managed to hold platelets for four days?
There could be a simple answer to this which is that he had been on a three day course of Dexamethazone, a steroid that can help the marrow produce more blood products. Deryn used to be put on Dex one week out of four during his intensive chemotherapy as the three weeks chemo killed the bloods, the one week of Dex would build him back up in preparation for the following three weeks of chemo - this was an ongoing cycle.
However - HOW can steroids help the marrow produce bloods when there is apparently (from the bone marrow aspirate that we asked to be done three weeks ago) NO bone marrow there?
On Saturday, Deryn's WBC (White blood count) had risen very slightly and his Neutrophils had gone from 0.2 (he came to the hospice at 0.05!) to 0.25 so a very small increment again.
The Drs at the children's hospital decided that we needed to have some sort of meeting to discuss what seems to be going on here so on Tuesday we had a visit from Dr Ponni and Dr Michelle.
The discussion mainly focused on the question of whether or not the hospice is now the best place for us as a family.
We came to the hospice because the Drs all said that Deryn was dying and they have been very honest with us now and told us that they believed that we would possibly have had just three to four days with Deryn once the support of anti-biotics and anti-virals was taken away.
For Deryn to still be with us four weeks later and in a much healthier state than he left the hospital in has absolutely thrown them. They have no answers as to how he could have even done what he's done.
The fact that he's healed his fingers and his mouth is one thing but he left that hospital with TWO catastrophic infections which should have killed him.
Both of those infections have now gone!
There has also been the issue of his NG tube and his stomach - up until about a week ago he was producing a lot of bile and I mean a lot, up to 500ml in one go. We were having to aspirate his stomach quite regularly and if we didn't it was emptying by itself.
Since his tube came up, he's been sick three times and they were nothing to phone home about.
I weighed Deryn about 10 days ago and he had lost 6kg, this didn't surprise me as we knew that his stomach had stopped absorbing food, hence why he was put on TPN the last time he was in hospital.
I weighed him again 3 days ago and he had lost just a pound in 7 days!
This says to me that the small amount that he has started to eat this last week has been being absorbed and that his weight loss has been dramatically slowed down.
The hospice are not going to kick us out, we can stay there for as long as we need to but they want us to know that they will help us in any way they can if we choose to try and have more of a normal life away from a hospice.
Our options are limited, there is no way in the world that we will take Deryn home to Norfolk. The level of support that we need for Deryn and have become reliant on will completely dissipate if we go back to Watton. The nearest hospital is over and hour away, the nearest hospice again takes some getting to and there are no community nurses so we really would be on our own.
We are looking into alternatives and I will go into more detail as we progress with our plans.
Right, next issue!
So, after the meeting on Tuesday they took some more blood from Deryn.
I said to the Dr that if his platelets have gone up again by themselves then we need to seriously have another chat - the Dr said that if his platelets go up again that it will certainly be 'interesting'....
Interesting is an understatement but I know that Dr's don't ever like to commit to anything, they were however, pretty happy to commit to the fact that NO ONE can graft after 40+ days of absolutely NO count improvement and that there was certainly no chance that Deryn was going to recover from his aplastic anaemia which was severely complicated by two catastrophic infections.
Yesterday morning, Dr Nikki from the hospice came in to have a chat - she's lovely and we had a good long chat about our options.
She mentioned that things now looked totally up in the air because of his blood count and that the Dr's at the Children's hospital wanted to have an emergency meeting with us.
I made a joke and said "Oh yes because his platelets were 7 on Saturday"
She replied by saying
"Oh I don't know what his platelets are today, (Wednesday) the hospital rang me just now with his blood results from yesterday (Tuesday) because they were shocked with what they saw...have you seen his results from yesterday?"
No, I hadn't but for the Dr's to be ringing up astounded and asking for a meeting I knew something was going on.
"I don't know his platelets or his red count but I can tell you that it was his WBC and his neuts that have shocked them. His WBC is 1.2 and his neuts are 0.5!"
WHAT IS GOING ON????
They had doubled since Saturday!
HOW?
I put my head in my hands and cried!
It was strange, they weren't necessarily tears of joy - more tears of exhaustion.... will this ever end?
Our heads are fried, I can only imagine what this must be doing to Deryn's head. To become accepting of what is going on, to really understand and be ready to face his death is something but to now be told that the goalposts have been moved is actually a little soul destroying.
It's difficult because no matter how much we wish that Deryn would survive this, we only want that if he can be well and no longer restricted in anything he chooses to do in the future - what point is there in surviving if you can't go on to live?
At this moment in time, Deryn is having some red blood cells. He decided on New Year's Day that he wasn't going to have anymore as he is very tired and just wants to go but then he saw his fingers! He spoke to me and asked if he could change his mind... Of course, whenever you want - Nothing is set in stone.
I have just spoken with the Drs here and to say that they are confused is an understatement, Deryn is doing something that they never expected to see.
The RARE word was used again quite freely and the whole thing really has thrown us up, out and all over the place.
The question now is what to do IF there is a temperature or an infection of some type.
I was posed the question hypothetically yesterday - 'If Deryn gets a temperature, do you want antibiotics?'
What? I have signed the forms, we have been through this, there was to be no more intervention, no resuscitation etc - we had bent our heads around that question and had made the hardest decision a parent would ever have to make and now, now you're telling us that things have changed and we should reconsider that!
I asked Deryn, what does he want?
He said 'No- I've had enough of hospitals, leave me alone'
We are all very respectful of that and if things change in the future and he changes his mind then that too is fine. The questions that have been posed to us now are questions that can be asked time and time again and the answers can change quite freely too.
The uncertainty is very hard to deal with, yes there's always been uncertainty and we are no different to any other family who have been dealt a difficult hand - the uncertainty would have been there even if Deryn had finished treatment but the uncertainty for us now after being told it was so certain is very hard to bend our heads around.
Deryns path seemed to be a certain one, we were very prepared for what was happening to us, to what was going to happen in the very near future and now, we have taken a different direction.
What we need to do now is wait to see what his bloods do in the near future. His neuts today are 4, HB are 76 (they were 77 on saturday) and his platelets were 5 so although he doesn't seem to be producing any as such, he is holding them remarkably well for someone with NO bone marrow - apparently!
The Drs have asked for a chimerism to check that his blood products are all Deryn and no crafty donor cells have popped up from somewhere but they believe this is all Deryn.
So as no one can understand how or what has happened, I guess it all we can say is that some sort of miracle has taken place?0
