Katydid is fighting fo her life

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• June 30, 2010 at 11:53 am #22732
  Esther

  Member

  For those who don’t know my daughter Cathie was almost rejected from here – it seemed because she is not a Christian and had plenty to say about Christian values – for which she was almost relegated to a lost cause. She is actually a Buddhist in learning.

  For those who are Christian and have contributed here, = the real ones I mean – could you please ask the Lord to explain where he said that to follow him you have to have no compassion for those who do not follow His word!!

  For those who have had no compassion on here I would suggest you are not following the word of our Lord ! My daughter is in intensive care and not expected to live after her transplant went somehow wrong. But hey – you will bless her and sk our god

  God defend the righteous who pontificated to my girl, on the MDS website! for sn honest- not sufficiiently CV Christanto enmbrace a different belief – and let us get a website that is religion and dogma free` I am led to ask – why do so-called Christians without an oumce of the milk of human kindess ploughing as I mother>

  June 30, 2010 at 1:14 pm #22733
  Rachael

  Member

  Esther

  My heart went out to you when I read your thread. I have no knowledge of what happened to your daughter in regards to how she was treated on this forum, but I know what it is like to go through this type of trauma. My young brother just passed away two months ago from bowel cancer and it was a heart wrenching time for my family. Like you my mother had to watch her child battle with an awful disease.

  It may be difficult but don’t let past words or comments fill your mind because the emotional stress you are experiencing is enough for anyone to cope with.

  Please send my words of support to your daughter. I hope she can fight the good fight and survive her transplant.

  My thoughts and prayers are with you and your daughter at this time.

  Keep strong Esther

  Rachael (South Australia)

  July 1, 2010 at 12:47 am #22734
  Esther

  Member

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

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

  July 1, 2010 at 2:01 am #22735
  Rachael

  Member

  I’m so sorry Esther. All my prayers are with you and your family.

  If you ever need a friend I’m here for you.

  Rachael

  July 1, 2010 at 2:21 am #22736
  Zoe

  Member

  Esther, I am so sorry to hear of Cathie’s passing. She was a wonderful young lady. I know she had a time of it for a while on this board, I wish that wasn’t so. I hope you don’t feel offended but I pray the peace of God fills your family with comfort during this difficult time. I know you loved her so much. I pray that your memories will sustain you with joy for the precious time you had with her. I just put on my Bravery bracelet for her and will wear it 40 days in her memory. It is a small thing I do to honor those who lost their fight with blood cancers.

  Zoe

  July 1, 2010 at 8:41 am #22737
  choijk

  Member

  Renee, I am so sorry for your loss. My sweet father passed away on June 15th from this horrible disease. I am still in the grieving stage and I too can empathize with your broken heart. My heart continues to bleed and I find it so difficult to move on with my own life. Prayers and thoughts to your family during this difficult time.

  One day when i feel more strong, I will post the events that led to my fathers passing, if it can be of help or insight to this disease… Otherwise please feel free to message me… I would like to help or be a friend to anyone in need….

  July 1, 2010 at 11:49 pm #22738
  maggiemag

  Participant

  Renee, I am so sorry to hear about Cathie. I tried to be of support to her, so I hope I am not at fault for upsetting you. If so, I am sorry. Please accept my prayers and thoughts for your entire family.
  Mags

  July 3, 2010 at 12:22 am #22739
  Mary4Mike

  Participant

  Esthe,

  I am saddened to hear of Cathie’s passing. When you feel stronger, please comment on what went wrong with her transplant
  I must have missed the personal attacks on your daughter, but I am sorry to read about that. That is not what this forum is about. I tried to encourage her about living with MDS and not let it become all consuming.

  My prayers are with you and your family at this time. I believe that I remember reading that Cathie had children. This will be a hard time for them, not to mention for you also.

  As far as how we are to treat non believers, the Lord wants us to pray for them that their eyes and ears will be opened to his Word.

  Take care,
  Mary

  July 11, 2010 at 3:27 am #22742
  Esther

  Member

  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

  July 11, 2010 at 5:29 am #22743
  Esther

  Member

  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.

  July 12, 2010 at 4:08 am #22745
  Mary4Mike

  Participant

  Renee,
  My heart goes out to you during this time of loss.
  When you are stronger and your head has cleared of some of the shock and sadness, please let us know of the circumstances that lead to Cathie’s passing. She sounded like a magnificant women and what a beautiful testimony to have 300 people attend her funeral. She obviously touched hundreds of lives.

  Mary

  July 12, 2010 at 4:12 am #22746
  Mary4Mike

  Participant

  June,

  I am so sorry to read of your father’s passing. I know that he gave it a real fight for quite a long time. Perhaps you can also share what lead up to his passing when you feel stronger.

  My heart is heavy these days as my father passed away suddenly in April of sepsis shock. He was the main caregiver of my mother who has Parkinsons. We had to put her in assisted living last month. Needless to say the past couple of months have been hard.

  Please accept my condolences.

  Mary

  August 7, 2010 at 11:53 pm #22767
  simplistic007

  Member

  Renee,

  I am very sorry to hear about your daughter’s passing. If you donh’t mind, sharing what happened with her transplant. What went wrong and what type of transplant was she getting. I was just diagnosed with beginning stages of MDS and Allogeneic transplantation may be my next step in the Fall. Any input is greatly appreciated. I am 43 years old and have a 22 year old only son who is my world. I have great family support and don’t feel ready to leave this world yet. Any input is greatly appreciated. God be with you and comfort you and give you strength throughout this time. God Bless.

  Thank you,
  simplistic007

  August 13, 2010 at 11:03 am #22770
  Esther

  Member

  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

  August 14, 2010 at 11:37 pm #22776
  simplistic007

  Member

  Esther,first and fair most important you have my condolense and my thought and prayers are with you. I truly appreciate your time and telling me this personal story. You do not have to apologize for not responding sooner as If I was in your shoes, I could not even think of answering this personal and delicate questions after losing a child. I have one son and he is 22 years old and he is my life. I raised all by myself and we are extremely close. I can only imagine your pain. what worries me most of all this entire process is my son. I say, I can handle whatever comes to me, but I worry about my son. I don’t this he is ready to lose a mother. He is 22 but 22 years old is still very young and we all need a mother regardless of our age. I appreciate your time and explanation of this whole process. Once again, thank you for your kind time. I would have lots of questions about what happened myself. It sounds very puzzling. Thank you for your time and I will keep you posted. I know that God will do what he has to do and he will not leave my side. The ultimate outcome will be in God’s hands. Thank you.

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