[Esther]

What a lovely reply simplistic – and though one can never totally understand another person’s situation I hear what you are saying about your son and how very very precious you are to each other!!

Cathie too wAs a ‘solo’ parent to her daughter for many years and made a mighty fine job of raising her – the thing is that her daughter is settled now with two children of her own and is 35 years old though there were times when we worried she never would be.

Your boy is still, indeed, at 22, very much a child though they would hate hearing us say that!!!! I do hope you are crediting him with what most of us as parents do not do – the ability to comprehend the truth. I hope you are sharing with him your concerns because if you are not he may be worried sick about some vague thing going on with his Mum (are you his Mom or Dad simplistic – I realise I have assumed you are a Mom – you may well be a Dad}! At 22 he is old enough to be given the respect and opportunity to know the truth which provides him with his right to consider the prospects of supporting you through this mess and being forced to face adult responsibilities long before he needed to! A valuable learning curve for your beloved son = simplistic though it be it can only help him to come to terms with the reality of life.

Bless you to bits you sound like a wonderful human being.

Anyone like Mary4Mike to add to this thread? – would appreciate comments on my account of my girl’s death whatever they may be!!

[Esther]

Hello there simplistic007! First off I must say please forgive me for having allowed time to go by in this way before responding to your post but as you can probably imagine the grief in my family has been so intense and I have felt almost immobilised by it! In addition I have been physically unwell too – but my doctor seems to have dealt with that and without all the physical pain I was suffering I seem better able to cope with the emotional loss.

I empathise with the diagnosis you have just received and maybe, like us, you wondered how the dickens did you get such a strange complaint that most people have never heard of.

Anyway – I will try not to draw this out. Cathie’s siblings, 3 of them, could not provide a match for a bone marrow transplant but fortunately one was found in Australia fairly quickly and of course her transplant was an Allogenic one. At the stage that it was decided to go ahead with the transplant she was having blood transfusions every 2/3 weeks. Her haematologist was fortunate to be a social friend of a Professor in Florida and as there were some puzzling aspects she entered into email communication with, from memory, Professor Alan Bent in Florida (I could be wrong and can check it out but it will take me a while to scroll back through all my information.) This highly esteemed health professional seemed to pick up on something that had been missed here in NZ (we saw the email exchange) and pointed out that Cathie had the added complication of a compromised Chromosome 3 (have never been clear about that). He recommended transplant asap as there was a donor available and all stops were pulled out to get things in motion.

All seemed to be going ok. She had the usual very sick reactions to the chemo, severe vomiting etc etc, mouth ulcers, all the reactions we are aware of and she bore it all with great fortitude. The transplant passed with no remarkable happenings. Then, she started to retain fluid – diuretics seemed to ease it initially but then they ceased to be effective and her body was retaining more and more fluid which could not be gotten rid of. She became very confused mentally, highly agitated by which time of course the whole family were on alert and constantly coming and going. It was decided to give her kidney dialysis one Friday and we were hopeful this would help but for reasons which we intend to get explanations for this was delayed until Monday. By this time she had deteriorated dreadfully but still we did not comprehend that her life was threatened. She had that dialysis and became worse. Tuesday they took her for a 2nd procedure but she was too ill to do it and she was transferred to Intensive Care Unit and put on total life support. We were told by the attending doctor at that stage that she almost died prior to the attempt at 2nd dialysis and to get all the family together because it was feared she would not survive the day! At that stage a brain CT scan was done to try to see if she had bleeding in the brain because of her agitated behaviour – she didn’t, it was normal – and all her organ tests before the transplant and during it showed her heart, liver, lungs and kidneys were all functioning normally. She survived through Wednesday but died on Thursday morning and we don’t understand why!! Forgive me, it’s hard to relive this!!! We have questions for the medical profession (of course in this country there is no such thing as suing anyone)and we hope to get those answered in due course.

Simplistic007 – I don’t want this to frighten you – you have comparitive youth on your side should the need for transplant become essential – you are 9 years younger than Cathie was – and the complications in her case were a puzzle to us because in all the literature, and there was heaps of it, that we received, no mention was ever made of possible organ failure so this could be unusual. Go forward love with faith that you will get through this and that you will not be leaving your beloved boy any time soon. My heart is with you, truly, and I trust you will keep all of us informed as to your progress! Put it like this – there were 5 bone marrow transplant patients in the Unit when Cathie was there – only one did not come through it – the others are getting well slowly but surely. For our lovely girl it was not meant to be!!!

Comments from anyone more experienced than I on what you may think might have gone wrong are very very welcome

[Esther]

Post Script – Rachael and choijk I wanted to send condolences on both of your bereavements and failed to do so in my post above! Family is so so precious and the agony when they are not here is intense. I feel deeply for both of you.

Mary4Mike – Cathie was 52 – she had one daughter and two grandsons who she loved to little bits. The pattern of our lives has a similarity in reverse. My own Mother died at 50 when I was 26 and bringing up, at that time 3 small children. My grandaughter Rachel, at a little older, is experiencing the same thing I went through all those years ago, struggling to cope with her children and man and at the same time suffering such tremendous grief. It is rare that one can say those dreaded words "I know exactly how you feel" (because mostly people actually don’t know how the heck you feel!) Of course I am too sensitive to say those words to Rachel but I know from sad experience what she is going through.

[Esther]

I have been trying to get back into the forum for some days now – I just could not log in nor could I figure how to rectify that – I must say my brain has felt like scrambled eggs and I would not normally take so long to solve the problem. However the penny finally dropped yesterday and I can post again.

Firstly, I am deeply sorry for my rude outburst up above, it really was uncalled for. I have no need now to rehash who said what to whom and this kind of exchange is usually a two-way street anyway and my girl certainly could be very feisty. I think she felt that she was being ‘preached at’ by some individuals when she had really come here for support. Thank you Zoe – you recognised that! And thank you all who have posted since my unpleasant lashing out and showed what I think is the true spirit of Christianity – forgiveness.

Cathie’s funeral was last Friday and it was beautiful in the extreme. There were about 300 people there many reaching back years of knowing her and her magnificent Community Spirit which led to a Social Work degree initially and then spread onwards and upwards into working with and on behalf of those less privileged than her own family. She worked with addictions to a large extent and her special area of interest at that time was with narcotics addicted pregnant women and their often born-addicted offspring – she was the Social Worker in the National Women’s Hospital here in Auckland and was attached to the ward treating these children.

That is but a mere snippet of the incredible and wonderful work my daughter did – both in a paid capacity (and she reached major status in her paid work) but in the hours and hours of voluntary work she put in over the years. She may not have claimed to be a Christian (though baptised and confirmed in the Anglican Church)but all of her work was based on Christian principles.

When I feel a little bit stronger I will come and share with you all the events of the last 4 weeks from the beginning of her bone marrow transplant to her dying. We are puzzled about just what went wrong and it may be that some of you on here will have some insights.

Thank you all Renée

[Esther]

Thank you from my heart Rachael – from me to you across the ‘ditch’.

Our beautiful Catherine Amanda died just before 5a.m. this morning.

[Esther]

Nasty stuff from ‘informer’ – I particularly did not like his "next time you want to talk to me" – well hello??? No-one on here as far as I can figure wishes to engage him in ongoing conversation.

Sadly most cancer sites seem to have the odd person wishing to push their own barrow – and it usually involves purchasing some unproven treatment or other. I came across it a great deal when I was battling through breast cancer.

[Esther]

Thank you Mary. Your response is very sweet and I appreciate your words and your prayers.

[Esther]

Hi again Jodi – any updates on how your Mother is doing?? Would be really interested to know. If it’s all happened when you have time would love some feedback.

And for all the lovely Christian people out there of which there are many – does your God encourage compassion to even non-believers? If that’s the case please spare a thought and maybe a prayer for my daughter who will start her Day 7 on 11th June!

Thank you very much.
Renée

[Esther]

Thank you and bless mtair for your inclusive message.

Tough new times ahead for a couple of our families and much knowledge thankfully coming from those who have already ‘been there, done that’ and continue to box on. I appreciate everyone’s input.

[Esther]

Hello Jodi,

I am Renée (though my user name is Esther – my bad, I thought we had to have a nom-de-plume here.)

I am the mother of Cathie who has not posted here for a while for her own reasons I guess and I hesitated to do this but in fact our positions are reversed – you are the worried- to- bits daughter and I am the anguished Mum (we are English so are more familiar with Mum than Mom but what the heck??)

I just wanted to give you the warmest hugs and thoughts it’s possible to send you for your Mum’s transplant and how very cool that her sister was able to be a donor. You will keep us all in touch won’t you because I read these threads daily.

For anyone who knows something about Cathie’s case – her transplant too is looming – she will be admitted to hospital June 11th for 7 days of intensive chemo – no radiation therapy – and her work up begins this coming week. Unfortunately none of her 3 siblings were a match but a suitable donor has been found and is having his work up as I speak. There has been a complication in that Cathie has a defective chromosome 3 which is not good and her transplant has been brought forward.

I do apologise for not being so intimate with all the scientific and medical terminology which is such a feature of this site and which I applaud – people knowing exactly where they are at must be a good thing.

Bless Jodi, and I hope you will come back and share with us again!

Renée

[Esther]

Gary, how very sad this news is, and you must be devastated. Please accept very sincere condolences to yourself and the family and it’s a wonderful aim to bring this dreadful disease and it’s consequences to the attention of a public who seem largely almost unaware of it. I wish you every success in your endeavour and I truly feel for you in your sorrow.

Renée

[Esther]

The relief must be fantastic Mary – what great teamwork and such a good result so far.

Fingers and toes all crossed for the next 10 days and beyond.

Renée xx

[Esther]

My heart is aching for you.

May you find strength and courage to move gently into the future. Sincere condolences to you and your family.

Renée

[Esther]

Hello again Ray. Thanks for the suggestions – I don’t have a laptop though, just an ordinary computer with built in speakers. I have noticed quite often when trying to watch videos that I am straining to hear what is being said despite my volume control up to the fully-on position. Anyway Friday my younger son is coming to stay for a couple of days – he is our family IT whizz kid so I will get him to see if he can help with the problem.

It would be very unlikely that there are any MDS Forums (as in meetings rather than message boards) here. We are a small country of only 4 million people (including many Americans who have discovered our beautiful land and come to live here)and as this is considered a rare disease (hope I am correct in saying that) there probably would only be a few people scattered around the country who are experiencing this. Perhaps there is a need there that could be addressed and I will suggest to Cathie that she ask her haematologist what would be the number of MDS sufferers in New Zealand.

Will let you know if I can successfully access your videos – and thank you again.

Renée

Edited to rectify a spelling error!

[Esther]

Thank you so much for that Ray. For some reaon I am having trouble with the sound on your videos but that is probably either my computer or my ineptitude!! I will sort it out. However I can see that visually it is most beautifully presented and I look forward to reading (or I should say hearing) all three volumes in their entirety in order to learn from your knowledge!!

Renée (Cathie’s Mum )

– funny that – I have always wondered why it is ‘Mom’ in the USA and ‘Mum’ in some other places!! Doesn’t really matter – the relationship is the same – lol)

[Author]

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