2007 almost over......

Well, 2007 has been a year and a half for Madelaine. And us.

We all had a lovely Christmas. Madelaine has been really well and is now building up her walking skills and she is becoming a little Natterjack too! Her hair is growing back a little bit. She has a wonderful character and is loving, mischievous and very funny. Right now she is enjoying her life. She has her medication everyday and it has become a part of her life and she is so good with it.
Shw has come on in leaps and bounds over the last few weeks. Its wonderful to see.
In 3 weeks time she begins an intensive block of chemotherapy which will last for 2 months. Very much like last time, Dave and I are a little anxious about it, naturally. We now know that it is likely that she will become neutropenic within this time and will have a spell in the hospital.

She is being a little darling.

1st Intensive is over!

Madelaine has now completed her first intensive block of treatment. She recieved a blood transfusion last week as her blood counts were extremely low. I think the blood donor was an olympic athlete as she was climbing the walls afterwards!
I am so pleased that this block is over now. We were dreading it. She has a maintenance block of treatment that lasts 8 weeks and after that she will begin another intensive block. That will happen in the beginning of 2008, so we are hoping that she will be well over Christmas time.
Its been tough for her, the last 6 or 7 weeks. The treatment has really taken it out of her. We are so proud of her and the way she deals with everything. She just gets on with it. She is talking, walking and laughing her way through.
What a star.

Little Sweetheart

Madelaine is at home now and in the last 2 weeks of her first intensive block of treatment.
She is more aware of what is happening to her now and she becomes very upset when anyone tries to administer drugs via her portocath or take blood from her. She is changing from our little tiny baby to a lovely little girl. She is becoming more and more confident each day; talking more and becoming increasingly amusing. She has started to walk and her hair is beginning to grow back. Her treatment is tough but she is coping very well with it all.

She is a little sweetheart.

Back in.....

Well, she is back in again. She is neutropenic again. Poor love. Her temperature peaked at 38.0.
She has lots of sores in her mouth. Mark, who is the Charge Nurse has said that its expected that she is experiencing this at this point in the intensive block of treatment. Its still quite soul destroying though. She isn't eating much or drinking. I know she is so uncomfortable and it must be painful for her. She still can manage a cheeky little giggle though, when she is drawing in her cot. Raina and Beth came to see her today and Madelaine's face just beamed when she saw them. It was just lovely.
All the staff at the ward are again being really great. Madelaine is in Bed 15 this time. In the bay we have Olivia and Miles. LilyMai was in until today but she has had her last chemo now and has gone home for good and she looks really well. How wonderful. I am itching for that.
That day will come...
Dave and I are taking turns again at the hospital. It really helps to have a decent sleep when you are home as you don't really sleep in the hospital at all. There are some parents who don't have each other to lean on, so I think Dave and I are very lucky in that respect.
She is due more Chemotherapy on Thursday but it will depend on her neutrophil count. They may delay it yet.
Watch this space.....

Home Again

She spent five days in Ward 10. She is home now. She is eating all the time as a result of the steroids she is taking. Up most nights requesting bacon, dindins and 'pottage' (porridge to you and I). I love to see her eating. I get comfort knowing she is eating. She isn't herself just now. She is uncomfortable with herself and I think her body is aching. Her hair has almost gone again now; just a few little sprigs of hair here and there. She has no more chemotherapy for another week, thankfully.
She is doing well, though. She still has a giggle from time to time and is hooked on drawing and reading (about cats, mostly).
She'll come back to us soon.

Any excuse to get back in the playroom!!!

Madelaine was taken into Ward 10 yesterday afternoon with a temperature of 38.8. It increased from 36.7 to 38.8 within 1 to 2 hours. She was very lethargic and has been of her food for a few days, only nibbling at her food. As a result she has lost weight. After having her blood analysed, it was clear that Madelaine was Neutropenic. Her neutrophils were 0.08.
Dave and I are doing shifts at the hospital. We have learnt that despite wanting to stay with our little girl 24/7, its better for everyone all round if we take it in turns to stay with her. We can both get rest then and ultimately we can give more to Maddie when we are with her. She is still tired, however, she has created 2 painting masterpieces in the playroom of abstract art today which are now hanging above her bed with Pooh.......
We both feel a little down hearted that she is unwell, but still positive that she will bounce back after this block.
We will have our beautiful baby back.

Her confidence

Her confidence,in her soul and mind,she's the most exotic colour..my baby's one of a kind.
...and so with every step she takes,i'm behind her.
Every book she reads,i read along side her.
Every pain that she feels,i go through it too.
Every day that she smiles,my world turns too.

daddy xx

Chemo Kid goes to the seaside!

Well, she has started her Intensive Block. She has coped really well so far. She was a little bit sick this morning and is very tired, but her spirits are still quite high. Dave and I are taking her to the seaside today for some fresh sea air!
I was not looking forward to this block, but we are here now and we have to make the best of it as much we can. We know this block is going to be tough for Madelaine and no parent likes to see their child suffering. I wish I could take it away from her but I can't. But what Dave and I can do is stay strong and calm and hold her hand through it all.
So the seaside here we come! Its bitter cold so Madelaine will be be well wrapped up and her little hairless head will be well covered! Its amazing how many hats we have now for her.

The Next Stage - Intensive Block of Treatment

This week Madelaine is to begin a six-week long intensive block of treatment. I am dreading it, to be honest. Madelaine has been full of fun and mischief since she has been at home. She has become more active; she learnt to crawl again and walk along the furniture and has made her first steps on her own. Her communication skills are wonderful and she natters away.
She is full of laughter and can be so cheeky.
After having spoken with Geoff and the Team, we have been advised that this will be a difficult block for her. She will be undergoing lots of chemotherapy during this time as well as courses of steroids.
I hate the fact that she may be unwell again. When she was unwell in the hospital initially we didn't see her smile for weeks and it was heartbreaking. We have become so used to her laughter.
I know, however, that this treatment is part of Madelaine's journey through to becoming healthy again. She may become unwell during this time. Our role as parents is to be there and be strong and love her through it.
So that is what we are doing.
Madelaine is a strong little person and I know she will work through this treatment and come back to us with a naughty smile on her face.

And The World Keeps Turning.....

It was all abit of a blur for us both. We were whisked very quickly from the L.G.I. to St James' via ambulance. When we arrived, we were escorted to Ward 10....the Childrens Cancer Ward. I don't know whether I can describe the sickening feeling I had in my stomach walking through the doors of the ward. Madelaine was examined again and it was confirmed that Madelaine had Leukaemia.
One of the first people we met there was a Staff Nurse called Jayne. She was so supportive and understanding. She is a very bubbly Liverpudlian with a twinkle in her eye and a wicked sense of humour. To us, Jayne was like having a supportive and loving arm wrapped around us. All the staff at ward 10 were super; such compassion and understanding. I think it takes a very special type of person to work on Ward 10 with all the poorly children.
Within the next few days we were bombarded with lots of information. Some of the information stuck, but alot of it disappeared into the ether. Again, the staff were amazing. They were very patient with us. I know I asked the same questions again and again, the answers never seemed to stay in my head. for very long.
Since those first few days Madelaine's health has been up and down. There have been times when Madelaine did not even have the strength to even turn over in her cot. Her appearance has changed; the steroids in her treatment made her face swell so much you could hardly see her eyes. Her hair fell out with the chemo. Her face has settled down now and her hair is beginning to grow back. At the moment she is walking arounnd furniture and crawling liked greased lightening!
Madelaine is on her 2nd portacath. She had an infection in her first one. She was the poorliest I had ever seen her. We were close to losing her. Thank goodness she is here now making lots of mischief like any other 17 month old.
We are so thankful to Dr. Geoff Shenton and his Team at Ward 10 and the Clinic. They are saving Madelaine's life.

The World Turned Upside Down - June 4th 2007

Madelaine had been unwell for several weeks; lethargy, swollen glands in her neck, a high temperature and she was off her food and sleeping all the time. We has visited the GP 3 times within this time. After speaking to many staff at the hospital, it is clear now that Madelaine's symptoms were almost exactly like those of a virus. Apparently, GP's only ever come across leukaemia patient once in their career. I don't hold any grudges. As far as I am concerned, she is still here now, getting treated and we are hopeful that she will be as fit as a fiddle after her treatment has ended.
We were advised that Madelaine had a virus and medication would not work. After almost 4/5 weeks, we took Madelaine to an emergency Doctors as it was a Saturday. He again, advised us that Madelaine had a virus. He wasn't concerned about her temperature being so high (over 39). He even advised us not to give her Calpol to reduce her temperature.....
8 hours later we found ourselves at Leeds General Infirmary. It was about 1 am. Immediately the staff moved us into the Resusitation Room. There were staff all over the place. It felt surreal. Madelaine was laid on the bed limp, hot and looked very ill. We had no idea how ill.
After about 90 minutes, one of the consultants and a nurse approached us. We were told that our Daughter was 'very poorly'. She had a blood disorder. Even at this point I didn't quite know what that meant. Dave asked the dreaded question, 'Are you saying that this could be Leukaemia?' I nearly passed out when he asked that because in my mind, of course it wasn't Leukaemia.

It was.

Our Daughter has Leukaemia.