Thursday, 24 September 2009

Enough is enough! No more tests!

Today we met with a new dr. He's from Oxford. I tend to use abbreviations on here for doctors names, as I feel maybe it's not my place to say their full names. Especially if I'm gonna slate them. Anyway this new dr, who I will refer to as dr p, is gonna take a slating, but he has such a funny name, I can't help but try to share it with you; his first name is the shortened version of Micheal. His second name rhymes with his first name, and is also the name of a kind of fish! ( beggining with a P) lol . Guesses to my inbox lol

Mad Auntie Mary and Jamie came along with us today to take us and for moral support . I needed it today. I was hoping for no more bad news, but suspecting we may recieve the PDCD diagnosis. I also suspected that they may want to do muscle biopsies.

So far, all the results are inconclusive. What we do know, is that Hope has a mitochondrial disease :0(
They have still not yet ruled out PDCD :0(
They still do not have all the results from the previous lumbar puncture. But they, suspect the results will be inconclusive.

So, what next? Dr P wants to admit Hope to Oxford, to have more blood tests and ANOTHER lumbar puncture. As if that's not bad enough, he wants to anaesthetise her and do muscle and skin biopsies.
I questioned the increased risks of anaesthesia associated with those with mitochondrial diseases. He admitted there is an increase risk, but there are more risks due to a) her being a baby, b) her brain abnormalities, c) her being eplileptic. As far as I'm concerned, that's a lot of risk factors. He, felt the risks were still small. He said if it were his baby, he'd take the risk. Yeah right!

And the point to all this?
Will they have definitive answers? Not necessarily.
Will they be able to make her better? No.
Will this change her treatment? No. All they can do, is treat the symptoms ( which is already being done).
What it MAY do; is give us a name (of a mitochondrial disease).
And if we know that, we MAY have a better picture of what the future may hold... Tell us how long we might have her for.
2 years? 5? 10? 14? It's never ever going to be enough. Whichever one of these diseases it is, it's not going to be long enough. But, I don't want to know. For weeks I have had in my head 2/3 years. With PDCD that's about it. In some cases longer. But really, it's awful to think that's all. If it's that , I don't want to know. It spoils the tiMe we have. Also, by not knowing, I am not decieving Dolly and Moo. Anyway, who really wants to know?I mean... None of us know how long we have....but if someone were able to tell you, would you want to know? I wouldn't. So, I guess the moral to this blog is; live each day as if it could be the last! Enjoy!
I'm certainly enjoying each day we are blessed with Hope's presence, as I am all of my kids.

I have ( and Chris agrees) decided to refuse these tests. They seem pointless. They serve to purpose or benefit to Hope or I. They only carry risks and more pain.
So that's it, dr p. Enough is enough. Leave my baby alone. She's my baby, not your guinea pig. It's quite empowering! No more tests!

I may change my mind along the road. Maybe if Hope starts getting sick. If, along the road we decided we need to know more. If, at some point it seems as though there may be some good come from knowing. I will discuss this decision with dr ch of course, but i think he'll understand, Even if he doesn't agree.



  1. You go girl! Take that dr P by the lab coat collar and tell him "NO MORE TESTS!" I have been checking your blog daily for an update since Hope's lumbar puncture procedure. I was so hoping they would have found out more with that test. Keep the faith and you are right, I wouldn't want to know either. Our time is our time. Why live life like it's a ticking time bomb. Take care and give that baby a big Hug from her "fans" in TX. Take Care, Jenn

  2. I 100% BACK you up on no more tests. We refused tests for Jude too, I mean why? There is a part of me that wishes I had resfused the in utero MRI so I could have enjoyed my pregnancy, BUT I guess I would not have known it was a stroke. Your lil one is very strong, and I think she will surprise you!!! Hugs

  3. Caroline & Chris - I think that is a good decision, bearing in mind that as you say mores tests will not necessarily benefit Hope in any way at this point. You can always change your mind if you feel you need to down the line. but for now, no more hospitals, no more painful invasive procedures. Yay! Enjoy your darling gorgeous girl and get back some normality.
    I think you are very wise - sometimes wisdom lies in knowing and choosing when to stop.
    All our love to all of you,
    Rachel, David James & Angel Josh XXXXXX

  4. Hi Caroline
    Just read ur update, Hope is your wee girl and you do what you feel is right for you and ur family.Lots of love to you all
    Marion xxx

  5. Caroline,
    I would respect your decision no matter what but I have to say that my gut feeling is the same as yours and I think you are doing the right thing. They is a strength in your words that shines in this blog and I think it comes from knowing you are doing what is best for Hope right now. Living in limbo of waiting constantly to be told bad news must be devasting and tiring. Taking the attitude you have of accpetance that you cannot change her condition and are therefore going to cherish what you do have is wonderful to read and I have nothing but prde for you.
    From what you've said, it doesn't sound like going through more test will give Hope any better quality of life than she already has and would in fact only satisfy the Doctors. Nobody can truly give you exact ideas of dates and as you said nobody really knows how long we all have. You have an amazing attitude and I hope you are able to enjoy each gift of a new day. Your admiration for all your children certainly shows..
    With love

  6. LIVE AND EAT CAKE and enjoy each tiny mouthful along the way :O)xxxxx

  7. I think you have made a very wise decision. I'm pretty sure I would have decided to do the same.

    Bless you and your family. We think of you often.

    Parker & Amy Hendrix
    (Turtletot and Turtlemom)

  8. Hi Caroline

    I agree with everyone else, I think you are making the right decision. Your daughter is beautiful Caroline and you have all been through so so much.
    Much love Debbiexxxxxx

  9. Caroline,

    As always, you, Hope and your wonderful family inspire me. I totally agree with your decision not to put Hope through any more tests, which like you say, can not help cure her or provide any additional treatment.She is so brave and has been through so much and it seems ilogical to put her through more unless it can really help her or you and Chris feel you need to know everything.

    You are so right, none of us know how long we have left on this earth but what you have, is the determination and the strength to live each and every day to the full with your wonderful family. The majortiy of us fail to do this, too wrapped up in the day to day drudgery and forget that what we have in our children is so special and that we really should make the most of each day. But we don't. I know that you will and Hope will continue to be showered with the most unending and powerful love.

    Sending you, Hope, Chris, Max and Jordan so much love and sending Hope a huge cuddle and a kiss.

    Corinne xxx

  10. A Father's Suspicion is as god as a Mother's intuition.

    I always go with my instincts for James and especially before he had any speech it served me well.

    As all parents know, they know their children better than anyone - and there is also evidence of a special connection (rapport) between parents and children with additional needs.

    You always do right for Hope and all your babies. You are thinking what is best for her. I agree with you.
    Love and hugs to you all, Rachel B & boys XXXX