Caroline C
Posted by

Week One 'The Scream'

Caroline C
Posted by
31 Mar 2014

I never really appreciated Edvard Munch's 'The Scream' until this week. 

After a couple of troubling chest infections, a deathly palour and a biblical nosebleed the doctor had suggested some blood tests for our daughter Nicoletta - to 'set our mind at rest'.  But I knew, I must have known, I googled leukemia for the first time a few weeks ago, which must be why I cried the night before, telling Andrea, my husband, how afraid I was.  So When the results came and the doctor ordered immediate removal to Ancona.  (Did I mention we live in Italy?) It was Andrea who was really chopped down at the knees.

The first night after returning home 70kms away, Andrea vomited and virtually collapsed.  It was easier for me, I was with Nico I had something to do to keep the bad thoughts at bay.  The next day tests were carried out and the news of acute myeloid leukaemia, apparently the least curable of the leukemias, arrived.  It seemed one punch after another.  But somehow a kind of massive 'kindness machine' swung into action.  We were given a parking permit, not just for the hospital but for the whole quarter, meaning I could pop into shops to pick up stupid stuff we didn't have, computer cables, plastic slippers - just really stupid stuff that had to be done.  A hotel was booked for the parent not with Nico.  Nico was the happy owner of a new computer and a wii and was visited by clowns and teachers.  Meanwhile the news had travelled in our home town and offers of help were flooding in from people we barely knew. 

The parent not with the child turned out to be me, as I had my own physical reaction and came down with flu on day 3  Obviously this is the worst possible thing for Nico so I was justifyably banished to the hotel room. 

I barely remember the minutae of the week, telling my Mum in Devon, friends.  I think my lowest point must have been on the Wednesday - it was pouring with rain, I couldn't get into the hotel till 2, I couldn't be with my child because of the flu and I was sitting in the car, crying my eyes out.  Everyone kept telling us to be positive but it took a while for it to get through.  The statistics were, still are 50/50 but there is no point focusing on the bad 50 - it can't be helped all we can do is just think about the good 50.  By Friday it occured to me that both Andrea and I were living on occasional pizzas and little else.  I found a fish restaurant that did take out, bought us a decent, protein packed meal and took it to the hospital.

Here we are a week later - Andrea is with Nico and being brilliant, entertaining her, holding her - looking after my littlest baby - whilst I can just wave in a fatuous way over skype.  But slowly we are both learning to live with this new thing in our lives.  We will get through this no matter what.  Meanwhile the medical team had quietly been getting on with it's work and Nico started her chemo on the Wednesday - we are all a team now and Andrea and I can actively contribute towards Nico's cure.

We find ourselves in a very different space, we have another daughter who also needs our care, we have a business which needs to continue.  We will get through this.

Today, Monday, I returned home to really chase this cold away.  I am not a church goer but I did stop off at Loreto on the way home. 

I

Comments

05.04.2014

Hi Caroline,

Thank you so, so much for being brave enough to share your story. Reading it has made me all the more determined to help beat blood cancer for people like Nicoletta and I wish you all the best with the treatment. You and your husband sound determined to help her through it all and I think your determination is admirable. You're not alone through this and we're here to help in any way that we can. Thanks, Andy

Anonymous
28.04.2014

My 4 year old son was diagnosed with ALL six months ago, I can really relate to how you are feeling. I hope and pray you feel better soon ready to support your daughter on her long journey. We still have good days and bad in terms of prognosis, but you rightly put it, get through this is the best mindset to have.

Anonymous
28.04.2014

Hi Caroline

We lived in Ancona for a while, so know Loreto & the area very well. My husband was diagnosed in March 2009 had a transplant in
September 2010. We came back to visit Marche in July 2011 - we're not religious but also visited Loreto. Do you know anyone who's been through AML treatment as I found it good to share the ups and downs. My husband is doing very well, he's back at Ancona University in June giving a conference. I'm happy to email if you want - feel free to send me your email via LLR.

Un abbraccio Gillian

Anonymous
28.04.2014

My one year old grandson was diagnosed a year today with ALL. The first few weeks were heartbreaking and we were in a dream. Watching all the treatment making him ill. He had blood transfusions, platelet transfusions and was admitted tO ITC after catching flu. A year on and he is so inspirational, always so happy, except steroid week!
He has two more years of treatment until life returns to normal for him and my daughter, I am so proud of them both. No child should have to go through it. Be strong xx

Anonymous
28.04.2014

Hello Caroline, what a great shock that must of been for you, I was diagnosed with Type B ALL in December of 2013 and just going through my treatments to get me ready for transplant on the 20th of may.
every treatment is different for each patient, but one thing for sure I have never met such wonderful people has the Dr and nurse who look after you. it is a great shock to all of you when your told. please give your daughter a Hugh hug. I wish you all the best. x x < 3

Anonymous
28.04.2014

my heart goes out to you your daughter and family members on this news what can anyone say to you ? my brother and sister-in-law had this news over 9years ago try and keep strong x

29.04.2014

Thanks so much for sharing your own experiences with blood cancer, anonymous. It must have been awful to see your grandson so poorly but it's fantastic to hear that he's now doing well on the treatment and is smiling again. We couldn't agree more that no child should have to go through blood cancer and we're working very, very hard to ensure that one day soon we will beat blood cancer for good.

29.04.2014

Gary - I couldn't agree more with your comments regarding the hospital team that look after you. My consultant and I will be friends for life. As you say, the treatment for every challenge is different but the feelings and journey that we go on is very similar and it's great that there's now an online community of people in similar positions to help each other on their personal journeys. All the best with your treatment in the run up to your transplant which I hope is a huge success. Keep us updated.

29.04.2014

Couldn't agree more, Tracy - thanks so much for your comment and everything that you're doing to help us beat blood cancer.

29.04.2014

Hi Jenny, thanks so much for your comment and sharing your own experiences with blood cancer. It's encouraging to hear that you are staying upbeat about things and are taking a pragmatic approach towards the treatment. We've got everything crossed that the treatment goes well and wish you both all the best for the future. Keep us updated - had you considered writing a blog about your experiences?

Anonymous
29.04.2014

Hi Caroline
I was diagnosed with AML 10 years ago and after going through chemo, a stem cell transplant (from my lovely sister) I am still here today. It is horrid there is no getting away from that fact but with the love of my family and the support and care of the lovely staff at Wycombe Hospital, the Radcliffe/Churchill in Oxford and also St Thomas in London and my own determination I beat it. I wish your family all the very best. Claire

Anonymous
29.04.2014

Hi Caroline
Thinking of you all. Matt age 8 our son was dx with AML Mono 7 in 2003, had to have a BMT thankfully his sister Emma was a 100% match. Now we live in France and Matt has just won Meillieur Aprentis de la Haute Vienne, for his cooking. So proud.
Stay positive. If you want a chat, please contact me. jackie.woodley@wanadoo.fr

29.04.2014

Hi Gillian, thank you for your kind offer. A friend of a friend is kindly 'mentoring' us through this. But every time I hear of someone making it through this it seems a little more achievable.

29.04.2014

Hi Anonymous - so tiny and so resilient. They are a lesson to us all. Many thanks

29.04.2014

I couldn't agree more on the medical staff front. It takes a special sort of person to go into pediatric oncology - they have all been so fantastic, professional and gentle. Many thanks for your thoughts

29.04.2014

I just need stories like yours to cheer us up - thank you so much.

Anonymous
29.04.2014

Caroline and Andrea, my thoughts and prayers are with you and Nico. I know that Nico's feisty spirit is going to see her through this and she will soon be home and running around again.
My ex just went through bone marrow cancer, he was in hospital over Christmas and had a bone marrow transplant. He is doing well now and while he will always have to be careful to avoid infections the future looks good.
Having your child go through this is unthinkable, I know, because I can't even imagine it. You two are a strong, united couple and together you will weather this storm in your life. Please give my love to Nico and to Maize who is the other pillar of strength in Nico's life.

24.08.2016

Just a very quick note to say, I'm sending positive thoughts your way.

 

Stay positive, support each other and keep fighting x