Thursday, May 3, 2012

Broken Hearted

I have just spent forever sitting here, staring at a blank white screen, trying to work out what I could write... 

How do I take all of these thoughts and emotions that are rampaging through my head and try to put them down in a way that they are understandable by other people... 

And I guess... I guess really I just need to write. 

 Do you realise that we have been on this journey for 6 months? 

 That's, like, half a year! 

Just over 6 months ago my life was normal, and then it all changed. 

We discovered that our beautiful baby girl had cancer. 

 Three months ago I sat here and I cried as I wrote that the first three months of chemo had been unsuccessful. 

All our hopes were pinned on a six week long intense radiation program that was supposed to light our way to a brighter future. 

Monday Nicola had her MRI and CT scan. Today we got the results. 

The radiation failed. 

The scans show virtually no response in either the primary tumor or the metastasis in her lungs. 6 months after we started this journey, we are still where we were when we started. 

We have not gained any ground. 

 We have not lost, but we have not gained. 

 Today we had a frank discussion with our daughter's oncologist. 

 She has 12 weeks of chemotherapy left in this cycle at which point we stop. 

There is a chance that the masses that are being seen on the scans are dead tissue, but her oncologist believes that there is an 80% chance that once we stop chemotherapy the cancer will start growing again. 

So this is what we have to look forward to. 

In 12 weeks we stop the only drugs that seem to be doing anything to keep this cancer at bay. 

We start a series of scans to monitor the progress of the masses that are spread so profusely amongst her abdomen and lungs. 

At the first sign that there is new growth, which they are anticipating we will most likely see within 6 - 8 weeks at most, we need to stop and consider what we do next, if we do anything at all. 

There is the very very real (and most likely) possibility that this cancer that is attacking my beautiful precious daughter is untreatable. 

There is the very real possibility that in a little over 12 weeks, we will have to make the decision as to whether or not we continue treatment of any sort or we let this demon take it's course... 

There is the very real possibility that they are going to come back to us and ask us to decide what, if anything, happens next. 

How do I make those decisions? 

I know I still have 12 weeks to go, but given that everything so far has been so totally unsuccessful, I can't help but feel like we are just taking steps closer, day by day, to the hardest decisions that I will ever have to make as a parent. 

How do I deal with this? 

I have gotten through the last 6 months by getting up every morning and smiling. As long as I smile everyone else thinks I'm ok, and that has been just fine... but it's getting harder and harder to smile... in fact, tonight I don't seem to be able to do much more than just cry. 

There is so much I want to say, so many emotions I want to get out, so many thoughts that are fighting for air time... but I keep coming back to my Princess Nicola... 

My baby... 

My beautiful, precious princess... 

and I cry... 

because life is just too unfair.



Stephanie Nimmo said...

no words, just love xxxxxxx

Kelli Lester said...

As someone who loves someone with a terminal illness I feel your pain. I would give anything for it to be different for you. I am so sorry

Leonie Rogers said...

I have just spent 2 hours reading your story, cross referencing medical terms and I am astounded at the power of your writing.

You're an amazing lady with an amazing child. Where does Nicola get her strength from but you? And you get your strength from her and your family.

I am humbled by your experience and your words. I will include my prayers with the others I am sure are bombarding God and I send you all the love and hope and best wishes for the best outcome for Nicola and a miracle.

You're an amazing woman. Truly amazing. Thank you for sharing Nicola's story.

E. said...

I am so, so sorry. I hope that the next 12 weeks give better results.

Jennifer Ness said...

I am so sorry.

Alice said...

I am heartbroken and so very, very sorry Jo.
I am also extremely angry at the unfairness of it all. Sweet Nicola has fought the battle for 6 months and deserves to win. My love, support and prayers go to you in the decisions you have now to make and God will support you in whatever you as her parents decide. Much love xxxxx

kmkollas said...

My heart breaks for you Jo. We are praying for you. Hugs from Iowa.

Post Pals said...

I can only echo what everyone else has said. I'm so sad for you all.

I hope Nicola is able to enjoy seeing the snow and can create some precious memories together,

All my love,


wilderones said...

Praying for your beautiful family. I stumbled upon your blog, my son has a very rare genetic condition. Your daughter is beautiful, and has a very special purpose for each day of her life. Wake up tomorrow knowing that she has changed lives, forever...and cling to the assurance of eternity when this life is temporary. It does not make the pain subside, this I know, but it will carry you. God will carry you. Trust Him, always...I will pray for his mercies upon your sweet princess.

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