Sunday, 31 October 2010

The Godfather

I have been thinking recently about the people who have helped and cared for us whilst we were going through the rubbish that was Catherine's illness, and today I thought I would tell you about her Godfather!

When Catherine was in Leeds hospital, the only friend we had who was nearby was Jonathan. Immediately that he heard about Catherine's diagnosis, he was at the hospital. I remember the first time he visited, in his Salvation Army uniform to make sure he could get to see us (supposedly Army uniform gives a little bit more authority than just wearing civvies!). We were so pleased to see him, and practically every day after that, Jonathan was at the hospital, being a huge emotional support for all of us. He helped me move my stuff in to the 'Home From Home' house for parents of ill children. He even took me to ASDA where we bought some stuff and some very stylish (and funny) slippers for Mark, and he bought copious amounts of chinese take away. He spent his own money travelling to-and-from that hospital, coming to visit even when he had had long days at work. Basically, he was a God-send. And if it wasn't for Jonathan, we would never have had the Pray for Catherine site which still has 1092 members, all who prayed for Catherine to be healed: http://www.facebook.com/group.php?gid=71748450211&v=wall

Jonathan also arranged for Catherine to be prayed for by members of Rick Warren's Saddleback Church (then 15000 people), the General of The Salvation Army and other important figures in the Christian Faith. For this we are so grateful, as it made sure that God was able to do all the miracles we so wanted him to do. So much so that it only seemed right that he became 'The Godfather' to Catherine in April this year. His wife Nikki, who also travelled out of her way to visit Catherine in hospital, is now her Godmother. So now I have fully embarrassed them both, I shall go to bed. But thank you SO MUCH guys. We love you :)

Saturday, 30 October 2010

What to say?


Two years of constant stress, worries about infections, side effects of treatment and getting a little girl through chemotherapy have really taken their toll. I am coping and getting through every day and I'm not even depressed. But emotionally there is a knot that I cannot untie. Mention Catherine to me and how great it is that she has finished treatment and you will get the expected 'Yes, it is great isn't it'. But I am not great.

My little girl has got through all this and mentally she is pretty much unscathed. She has a phobia of needles and sometimes talks about when her hair fell out, but otherwise she is doing ok. But all the 'keeping a stiff upper lip' and jollying Catherine along that I have been doing the last couple of years has not been good for me. All the playing down of Catherine's sickness and nausea, all the chivvying along telling her she would be ok, all the bouncing around to try and make her feel better, all the 'making normal' has driven me, quite frankly, mildly insane.

Smiling on the outside whilst my head was screaming 'MY LITTLE GIRL HAS CANCER. DOES ANYONE KNOW WHAT THAT MEANS??????'

Every day thinking and feeling I LOVE MY KID. WHY DOES SHE HAVE TO GO THROUGH THIS?

I sat with Catherine tonight on the sofa as she had leg pains. She had been out walking and her legs hurt. I nearly cried there and then. Painful legs were the first symptom of Leukaemia. I remember reading in my home doctor journal two years ago about painful legs and they were either a sign of growing pains or leukaemia. At the time I thought 'growing pains...that must be it. It could NEVER be leukaemia'. Oh how wrong I was.

Now I live my life in a weird sense of tension, constantly on alert. It is almost like I have been through a war zone and am now trying to believe it is over. And whilst I keep trying to fool myself that I am ok and Catherine is doing ok and everything will be fine now, my subconscious mind keeps telling me that life is actually quite dangerous and anything can happen at any time. Seriously, if in the next few days some trick-or-treater comes up and whispers 'boo' over my shoulder, I will leap out of my skin!

It isn't just Catherine's illness that I have dealt with over the past few years. I was diagnosed with heart failure after the birth of Catherine's brother and was told that I might live or die and that it was too early to tell (I was diagnosed April this year). Miraculously, God healed my heart but even after a miracle, I still feel like I have been in the trenches for too long.

So there you have it! And whilst I am so grateful to God for his healing of my child, and whilst I am so lucky that medical treatments mean she is still here, I am hurting. And I imagine that Suzanne is probably the only other person who reads this who might have some understanding of what on earth I am going on about...but then again there may be others and I might be wrong...

Tuesday, 12 October 2010

12/10/2010

12/10/2010 - the final day of Catherine's treatment.

A much different day from 25/8/2008.
You may remember the blog posts from those early days:
http://catherineisgreat.blogspot.com/2008/08/discussion-with-specialist.html

Our Consultant is very pleased with her and is now referring her to a surgeon to have her portacath removed. We await the results of her bone marrow tests tomorrow. These tests check the bone marrow to make sure her cells are all working correctly and that all signs of disease have gone.

Our consultant says that based on the type of leukaemia she experienced and her responsiveness to treatment, statistically it is highly unlikely that it would return. She will be monitored closely for the next two years and will continue to receive check-ups until she receives the final 'all-clear' when she is ten. So whilst the treatment is over, for which we are so thankful after two years of constantly being 'on alert', we have to adapt to a different normal again. Catherine will receive monthly blood tests to begin with via a 'finger prick'. She feels pretty confident about having these tests done but is now starting to ask lots of questions about her treatment. Tonight she asked about what they did whilst she was having 'wobbly medicine' (general anaesthetic) - she has never asked about this in such detail before. She has also asked about writing her own story down to give to her school teacher as one of her homework projects.

She has also asked about when we are having a party to celebrate the end of her medicines. I replied that after she has her portacath removed, we will plan something special for her!

Thankyou so much for your support and prayers x

Monday, 11 October 2010

Tomorrow we are taking Catherine for her final bone marrow test and chemotherapy. It feels like it has been a long journey getting to this point, but one we have travelled with God. I feel it will be a hard day tomorrow. Catherine cannot eat until after her general anaesthetic and that may be at 3pm! I am hoping and praying that all goes well.

Saturday, 9 October 2010

Photo evidence of the last days...



Evidence of the last dose of daily chemotherapy. Here we have on the right, 'strawberry medicine', otherwise known as mercaptapurine. The left syringe is 'banana medicine' otherwise known as Septrin (to stop lung infections). The middle syringe is Dexamethazone, otherwise known as 'grumpy medicine' (Catherine's steroid). A daily occurrence that is no more...only Septrin for a little bit longer.

Friday, 8 October 2010

Final bone marrow test and final chemotherapy

On Tuesday Catherine is having a general anaesthetic and her final bone marrow test to check that she is completely well. She will also be having the last intrathecal chemotherapy into her spinal fluid. Please pray that this all goes well. We are getting so close to the end. By the end of this month, Catherine's treatment will be over :)

Saturday, 2 October 2010

Last daily chemo is TONIGHT!

This week we have seen the very last of Catherine's steroid treatment and tonight Catherine's daily chemo comes to an end! It will be very odd for Mark not to be giving her the nightly syringes of medicine. We now await a time for Catherine's final bone marrow test which will look at her cells to ensure she is completely well before stopping treatment. Thankyou for your ongoing prayers :)