CMML - chronic myelomonocytic leukaemia

Hi there just want to send best wishes to you and your family. I read your article in the press. We too have been in your situation and we know how challenging it can be on the patient and the family. Being stuck in isolation for long periods at a time, watching the person you love coping with the effects of treatment, the good days and the bad. The A TEAM (as i called them) in the unit are fantastic. I will be watching your progress and wishing you a very positive future. KEEP SMILING

Wishing you, your wife and children all the very best throughout this rollercoaster road you are all on at this time.   I do feel for you all. It really does flip yr life upside down and all around doesn't it.   I am from Timaru and my 15 yr old girl Hope is 16 months into treatment for ALL Leukaemia, with 1 yr left of treatment.   We spent the first 7 months of treatment  up in ChCh.   Now we return only once a month to ChCh for certain treatments,  well i should say all going well we would return once a month,   but  more often than not  its been every couple of weeks  due to infections.  BUT we did do a whole month this last one without having to return. A record :)    2Units of blood yesterday at Timaru hospital,  but that doesn't count as we are still home.   There was a time home started to feel like the CHOC ward in ChCh,  and some weekends when i came home it felt like it was my second home.    Sometimes I couldn't even  imagine life getting some normality back to it,   it does come back once yr day comes to go home...slowly...semi normal  anyway :)       Stay positive,  your day will come.   I dont know what your your cure rate is but you did state in the paper it was a high fatality rate.  I can remember one of the Oncologists once saying to me,  you can look at percentages of survival all you want but simplified it still means yr daughter may live or she may die,  and that per centages really dont mean that much.    I thought that was a bit of a crappy thing to say at the time really as Hope has a 75/80 % percent  cure rate.  But when you look at some one else,  like maybe yourself who has different cure rates its not a bad thought.   And theres gotta be something in positive thinking,   I'm sure of it.    Once again all the best to all of you.

Read the article at stuff.co.nz so decided to check out your website since I'm a fellow Timaruvian .... Good luck with the treatment will check out your progress online! Awesome website loads of info and great pics! Be well

I just went to Stanford on Wed and they will decide if I am to take a wait and see approch or go ahead with the transplant. this is made by a panel of Drs. I am at a stage that thing are not too bad. I wonder how many people just developed this out of the blue like me. I am very aware of my health and started to notice my enegy going down and they could not figure out why my blood counts were off. So glad to at least have others with this problem. I am wondering why you are undergoing Chemo as far as I understand you only get this to kill your immune system then put new bone marrow in. Is this what you are doing? I wll keep you in my thoughts since I am not at this point yet. If thoes pictures are of your daughter WoW such a cute one, you are very lucky.

Take Care

Collyn

This site was built by myself while in hospital getting treatment for cmml,

kind regards