I have spent hours staring at a blank white blog page, trying to find the words, to put words together, to try and do something to explain...
But words fail me.
I think the problem is that when I write, I write my feelings, I write my emotions...
And right now, I am just emotionally numb.
8am this morning we got the phone call we had been waiting on... a call from Nicola's oncologist in Brisbane... with the results of Nicola's MRI from yesterday.
We knew yesterday that it wasn't going to be good news.
Today it was confirmed.
The cancer has spread, aggressively.
It is impacting most of her major organs, but predominantly it is impacting on her kidneys and her bladder. Both her kidneys and her bladder are swollen and not emptying properly.
Her blood tests show that her kidney function is impaired.
There is nothing that can be done. Surgery is not an option, no surgeon will do anything invasive because it will only cause her pain and will not buy her any more time.
Further chemo is not an option because she has severe renal impairment.
We are officially out of options...
And with how rapidly she has shown progression of disease we are now fast running out of time.
If we are lucky, if we are REALLY lucky, we may have a few weeks.
If her health deteriorates, we may have a matter of days.
Days...
That is what my daughter's life has been reduced to.
This time last week we were in California. We were high on happiness at Disneyland. We were celebrating and enjoying the time of our lives...
Today...
Today I don't know what to think or feel.
I feel hurt and angry... I feel confused... I feel alone in a room full of people.
I want to pause time, I want to pick her up and hold her in my arms and make time stand still so I can stay in that moment for ever...
But I can't.
Instead every hour seems to be zooming past at an alarming rate and I just don't know what to do next.
I feel overwhelmed... and lost.
I feel numb.
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A story about dreams for a special little girl.
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15 comments:
I am so, so sorry :( I have no words for you that will help. I just wanted to say that although you don't know me... I am here and sending every thought, feeling and vibe to you and your precious little girl xxx
Tears flow freely for you, I really wish I had a magic wand. Words are not enough so I will pray and pray for your princess.
I am so sorry to read this post. Thinking of you and all your princesses.
At this time, words may not mean much. Please be aware that Nicola and your family have touched so many people's lives. I hope that Nicola's pain is manageable.
I pray for peace and acceptance for you. I can't begin to imagine the depth of your despair and I'm so sorry.
I wish I could take some extra hours from my own life and pass them to her. I can only imagine how you must feel, I'm not sure I could be as strong as you if my baby girl were to go through this. I send you prayer after prayer in hope that your wish of more time with your precious daughter is granted. All I can say is how sorry I am to know you and your family are going through such pain. Your daughter is beautiful and she has touched so many hearts, I don't know you but my heart is breaking for you and I offer my love and hope towards all you xxx
I agree with Jemma Edgarton. I wish I could give Nicola some of my life, some of my health (I have lots to spare). I wish I could do something that would make a difference.
Instead, all I can do is pray like mad - you're in my thoughts so much during the day that I find myself thinking more about you and your family than I do of my work.
I don't know what to pray for though. Strength for you, your husband, your princesses. Love to wrap you all up in its warmth and comfort. Support to carry you all through this time. I don't know if I can pray for peace because I cannot feel it so I can't pass it on to you.
Please, please know that although there are so many of us who have not met you or Nicola you have come into our lives in such a way that they will never be the same again. We will value our health, our families and the medical profession in, perhaps, ways we hadn't done before.
I have only been on this journey with you for a short time but I am changed by your strength. You are an amazing woman and I am humbled by your grace and eloquence in a situation I cannot even begin to imagine.
All of my love and thoughts and prayers for anything and everything that might help are sent to you.
xxxx
I am so sorry to read this blog, cancer is devastating at the best of times but in one so young then there are no words that come to me, God Bless and our thoughts are with you in this difficult time
My heart is broken for your family. You are in my prayers.
So sorry for the devastating news you have received. I have not yet read through the entirety of the blog but I am assuming it has been four years of not very good news. I can see however that you have loved Nicola an infinite number of years beyond her four and will continue to pour that love into her for however much longer you have together.
I lost my daughter March/11. She too had what was labelled a devastating condition by way of missing the majority of her brain. She survived and thrived by way of her brain stem. Not expected to survive past her a few months she lived her biggest life though profoundly disabled for eleven. Knowing your child will pass makes it no easier. There is no way to prepare for it. Losing your child has a profound impact for the rest of your life. There is no soft selling it. As you love on your baby for whatever time allotted you, however I thought I would share with you that the road ahead of you is paved and should you need to reach out there unfortunately is a whole world of us forced to go on without one of our children to help you.
Jo......there are just no words.....even th/ugh you feel alone, you are in so many people's hearts, & thoughts......devastating situation, just try to keep holding on!
Love & comfort to you all XX
Alice
Jo,
I tried to comment last night but I was just so sad, and felt so clumsy with it, I didn't know what to say.
Joel and I both read your update together, tears freely flowing for both of us as we tried to imagine for a moment the grief and terror and pain you must be feeling. It defies belief. I don't know what the right thing to say. I of course, want to hope and pray for a miracle. But if not, I want to pray for more time, less pain for Nicola. I want her to feel peaceful and as happy as she can be. I want peace (or whatever version we must have of it when facing something so catastrophic) for you all.
I want it not to be true. More than anything I want this whole damn thing to not have been true for you. Or for any other family (Tricia Wheatley ,I'm so sorry for your loss. Reaching out right now to Jo is a wonderful testament to you, and to the courage your daughter must have taught you all).
I agree with Leonie and Elizabeth. You've shared something (and someone) truly special with us. We may not know you, but Jo, none of us will ever forget Nicola. We will be forever changed by your daughter and your family's courage and endurance and hope.
Dear Jo,
God sent you an angel. He saw Nicola and decided you would be the perfect family for her. The love you guys share, even though it is for a short period is exactly what she needed. All she is doing is going back to her place in Heaven, so she can be the angel looking out for you and your family. I know this is hard but try see this as not a loss but as an opportunity to love more then you can imagine.
I believe everything even something so painful happens for a reason. You may not know that reason now but it will come to you.
God bless you and your family
:-)
Alone in a room full of people...
I hope that the numb sensation gives way a little so you can somehow, by some miracle, find a strand of peace or love or joy (crazy, I know) to enjoy your baby for the time you have with her. Your life is something I am reading about, but I try with all my heart to grasp the fact that what I read is your reality. And I am so sorry for this reality. I pray for you and your family. May you stumble upon complete surprises in these days that will give you strength, smiles and some measure of peace. And may your precious little girl's life continue to remind people like me about what truly matters in this noisy world of stuff, nonsense and clutter.
Jo,
I wish I could be there with you to hold you as you hold Nicola. No words are necessary. No words can adequately express things right now. Please allow the sisters and Dad a little time with her also (I know you are).
I truly believe what "Unknown" said about God placing Nicola with your family. Her earthly purpose may be fulfilled, but her life and how it affected each of you will live on with you.
Our family is praying for strength for all of you, support from everyone everywhere, peace in knowing that you all did the very best for her medically and in loving her as part of your family, and loads of love for all.
Please consider Tricia Wheatley's offer to contact her to just talk and share. Maybe not now, but down the road. And please know that you are not alone.
Cheryl Keeney
Chris -- 29 yrs -- Costello
Oregon
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