Madelaine's Journey with Leukaemia

2011-05-10T06:39:00.000-07:00

2011-05-05T04:49:00.000-07:00

Well, Madelaine is now a gorgeously happy and healthy 5 year old. She is in the Summer Term now in Reception Class at Fulneck School. She is a very jolly little girl; she has grown into a very kind, loving and sweet little girl. Her best friends at school are Avantika and Eliza.

She has check-ups at the hospital now once every 4 months. I still have a feeling of dread when I take her. Particularly when I see new children who are being treated and families who are going throught the mill, just like we did. I remember the fear from when she was poorly and the feeling of complete helplessness.

I still thank God everyday for my baby. She maybe 5, but she will will always remain my baby....

From your big sister Beth

2009-12-04T11:19:00.000-08:00

I havent written on maddy's website in ages and well a lot has happened between that time finally maddy is cured and has been for a little while and we are finally getting back on track. Am so proud how well she has done i'm just glad that it is all over now, even though we do have the times when she gets a little ill and goes into the hospital but we know that she will pull through like always. She is getting long hair and we can now play with it even though she doesn't let you touch it she is also a very funny little girl and has a very good personality and when she sings her christmas songs and dances with me and sings the chicken song with me she is hilarious and so cute, I can't wait til she reads this becuase I would like her to know how much i love her and how much am proud of her.
From her big sis Beth :) x

THIS IS IT!!

2009-08-28T02:32:00.000-07:00

Yesterday was a very big day for Madelaine.
She had her very last treatment! She had a Lumbar Puncture and some Bone Marrow taken.

After the op, as soon as she opened her eyes she gave me the the biggest , cheesiest smile ever.
It was wonderful.

For 2 years and 3 months, we have not been able to think about the future, or to think about the end of her treatment for fear of what may happen. It has felt like an eternity since her diagnosis.

Thank you to all our friends and family who have supported us and loved us though throughout this time.
Thank you to all the wonderful people at St James' who are amazing. We cannot express exactly how we feel; you have given her back to us.
Specifically to Dr Geoff Shenton who has been with us since Madelaines diagnosis.
Thank you, Geoff. 'Thank you' doesn't quite seem enough....

I am reminded how lucky I am.

Lisa
x

Can you believe it.....!!!!

2009-08-17T06:25:00.000-07:00

Can you believe it......Madelaine's treatment ends in 10 days time!!!!!
In the beginning I couldn't even imagine it. Nearly 2 years and 3 months Madelaine has been in treatment. That is two-thirds of her entire life.....
At the moment, Madelaine is a little bit out of sorts as she is on a course of Steroids and they play havoc with her sometimes. However.......this is the last course of steroids she will have!!!!
She is still coming on so so well.

We are all counting down to the the 27th August, 2009....its gonna be a great day.......

So proud of you Madelaine, my darling xxxxx

10 weeks of treatment to go!!!

2009-06-19T07:28:00.000-07:00

Madelaine was in hospital yesterday for her Vincristine and a course of steriods.
Her blood count is good and the doctors are pleased with her.
Sometimes the vinc. does have adverse effects apon her. Last night she said she didn't feel very well. We took her temperature and she seemed fine. So she slept in bed with us last night for extra cuddles and comfort. After sleeping all through the night she awoke as bright as a button!
We have noticed that the steroids also have their own effects; Madelaine's mood swings change and are very interchangeable and she also has an appetite of a adult! She eats non-stop on this treatment. Its good to see too.

Here's hoping for a troublefree remaining 10 weeks of treatment for Madelaine.

xx

Madelaine's First Day at Lambs Hill

2009-06-15T03:11:00.000-07:00

Madelaine had her 1st day at Lambs Hill Nursery at Fulneck on Friday. She looked smart as a button and she woke up so excited and wanted to get her uniform on straight away.....we thought it best to leave it till she had at least had her breakfast!
We were met by Mrs Hodgson and Madelaine didn't wait a minute to hold her hand to be taken to the class. She had a little explore around the play area and gave me a kiss and told me she loved me and waved......She obviously wanted me out of there! My eyes filled up and I think they were filling up throughout the day! It was a beautiful Summer's day that she really enjoyed with her new friends. The staff are lovely there.
I was on tenterhooks all day and couldn't wait to see her.
She is looking forward to her next visit.

Very Proud Mummy.

Good News

2009-06-05T05:50:00.001-07:00

Madelaine's bloodcount was good yesterday and the lumbar puncture went ahead as planned. Her chemotherapy has been increased as a result. She coped really well yesterday. She was abit 'miffed' that she had to be fasted for the anaesthetic and was a little grumpy that she could not have breakfast. She has exactly 12 weeks left of treatment now. Geoff, Madelaine's consultant, is really pleased with Madelaine's progress. Geoff originally diagnosed Madelaine's illness 2 years ago and we, as a family, have maintained a wonderful relationship with him. I trust him implicitly and sometimes find myself hanging on to every word he says. Madelaine loves him to pieces and is really relaxed and cheeky with him. Geoff and his Team have been amazing and they do not just do their jobs, but they actually genuinely really care about the children that come into their care.
They have saved Madelaine's life and I am eternally in their debt.

Madelaine's Progress

2009-06-03T08:45:00.000-07:00

Madelaine's treatment has approximately three months left to go. She is doing very well. Her chemotherapy was reduced last month as it was really knocking her bloodcounts and we were concerned about it. She is due in the hospital tomorrow for another Lumbar Puncture and we will get her new bloodcounts. Hopefully we will see a healthier bloodcount! She is enjoying the sunshine and has been having lots of fun in the paddling pool and in her tent in the garden. She is very energetic and is a non-stop natterjack! (no idea where she gets that from....)
Another piece of good news is that she is starting at Lambs Hill Nursery at Fulneck a week on Friday. She will be attending the nursery for a few days before they break up for the Summer. She will start full-time in September.
We are all really excited about it, particularly Madelaine who cannot wait to get to school!
It's another milestone for us all. It is now exactly 2 years since she was first diagnosed with Leukaemia and I remember in the beginning the fear of the unknown; the fear that Madelaine would not be here in two years time.....and yet here she is.
My very wonderful and brave little girl, who I will see in her first school uniform a week on Friday......
I think I will need tissues.......

Thank you to Fulneck Junior School!

2009-06-03T08:20:00.000-07:00

I am very happy to tell you that the children of Fulneck Junior School have also been very busy raising money for Candlelighters! They have designed a collection of Greetings Cards which have been printed and they have raised a whopping £150!
Its a very worthwhile cause and a cause that we feel very passionate about. This money is going towards irradicating Childhood Cancer and every contribution counts. Many families have been touched by Childhood Cancer and we know through Madelaine's illness how heartbreaking and scary it is.
Well Done to the Fulneck Junior School!

Tobias. Alfie and Theodore

2009-06-03T07:50:00.000-07:00

We all know that children are amazing, don't we? Well, three really special and very generous children have just proven that this is true. Tobias and Alfie had a joint Birthday Party and they raised £328 for The Candlelighters Trust by forfeiting their Birthday gifts and asking their friends to make a donation to Candlelighters instead. In addion to this, Tobias' younger brother, Theodore raised £230 at his 2nd Birthday!
Tobias, Alfie and Theodore, it's amazing what you have achieved. The money you have raised will be gratefully recieved and will be spent on going towards finding a cure for Cancer in Children. Well Done!!
I have posted a gorgeous photo of Tobias and Alfie having fun on their Birthday! Gorgeous!!

Another Milestone!

2009-03-27T04:07:00.000-07:00

Madelaine was a Flowergirl on Saturday at our friends' wedding. Congratualtions to Mr & Mrs Huddlestone!!
We were a little anxious as we weren't sure if Madelaine would be well enough. As it happens she was super! She was so excited to wear her Princess Dress! She looked like an angel and was as good as gold apart from not wanting to pose for the camera (quite unlike her actually!!! - she must have been tired!)
So yes, it was another milestone for us all, really. I was as proud as punch on Saturday and shed one or two tears (as per!)

She had treatment yesterday and her blood counts are good and Geoff (Madelaine's Consultant) has increased her daily chemotherapy, so he must be happy with her. She is changing everyday and blossoming into a beautiful, funny, inquisitive and happy individual.
Keep it up, Madelaine. We are all very proud of you, darling. xxx

February Update

2009-02-17T04:15:00.000-08:00

Madelaine has been doing really well just lately which is just great. We see her developing just like any other toddler. She climbed onto our bed last week wanting to jump up and down on it...so I told her not to as she would fall and hurt herself and then she would cry. She responded by saying, ' I won't cry, Mummy, I'm too happy!' And she was. She is the happiest child, full of fun and mischief, she is very inquisitive, she loves to draw, dance and sing and she is becoming extremely assertive...or should I say....bossy!
She has about 7 months left of treatment now and we are all counting down.
Lets hope she continues through her treatment as she is doing now xx

How much Madelaine has gone through

2009-01-24T10:37:00.000-08:00

It seems like it was only yesturday we found out that you had Leukaemia you have been so brave and gone through so much this past year. It's amazing how much stuff they can put in a little body like yours but still you find energy to cheer us all up and make us feel like your still you even though you are still really ill. Am so proud of you and how you have dealt with this even though you are only little you still always take your medicine and do everything you are told to do. I can't wait til you are older and you read this because I would like you to know how you have helped us get through the rough patches just like we have helped you. It's really hard to see you ill sometimes because we are use to seeing you so well and smilie and always laughing but when your ill we know when your ill because your not laughing as much or smiling as much and that is a really hard thing to see. You have brought the family so much closer and we will always be there for you no matter what. You are so cute with your little bed hair and your mucky hands and nails and that really cheeky smile and laugh you know how to cheer people up and make people laugh. But I just want to say I love you so much and keep strong like always.

Love your sister Beth.xxxx

2009-01-09T06:01:00.000-08:00

Happy New Year to everyone.

Madelaine had a lovely Christmas but I think she was a little overwhelmed at first by the whole thing. However, after Christmas Madelaine's health was not so good. We have been in and out of the hospital for the past week. Madelaine's temperature has been up and down, and she has been generally unwell. She had a chest x-ray and they found something different on there. They say it possibly maybe bacterial. She is on antibiotics at the moment to give her a hand. Her HB was low so she has had a blood transfusion this morning so I imagine she will be climbing the walls when I get home! Her neutrophils are decreasing after having a huge increase a few days ago, so we are keeping a close eye on her. We have kept her out of nursery for a few weeks to try and control he environment as much as we can. She is growing up before my very eyes. She is still full of fun and mischief and as adorable as ever.

Lets hope 2009 brings us all health and happiness xxxx

Thank You to the Tuesday Club

2008-12-22T23:53:00.000-08:00

My Auntie Margaret and her Tuesday Club at St Josephs Church have given Madelaine £50 for Christmas. Each week all the ladies say prayers for Madelaine. So thank you so much, Ladies! When she is a little better in the new Year we will visit you and Madelaine can say Thank You in person......Much Love..x

Thank You

2008-12-17T04:50:00.000-08:00

Dave, Madelaine and I were visited last night by Dave's brother, Richard and his wife, Galen. Richard passed us an envelope. Inside the envelope was a sum of money that had been raised for us to ease the pressure over Christmas. The organisers were Colwyn and Denise; both of whom have been touched by cancer in their lives. They also raised an equal amount of money towards the Candlelighters Trust at St James' Hospital. Richard told us that all the family had been involved and doing raffles and such. Dave and I were were absolutely dumbstruck (which is a mean feat!)
I burst into tears (for a change!)
I would like to take this opportunity on this blog to say a massive THANK YOU to everyone who participated in the fundraising, in particular Colwyn and Denise.

The world is full of wonderful people and thankfully, they are in our lives.....

Home

2008-12-16T01:29:00.000-08:00

Madelaine is now home. We brought her home yesterday lunchtime. Her chemotherapy has been stopped till Thursday when she has a Lumbar Puncture.
Its gorgeous having her home.
xx

My Little Girl

2008-12-13T17:13:00.000-08:00

There is not one moment when you are not in my thoughts
Yoy make me laugh..
You make me cry...
Most of all , you make me happy.

You are my angel.

And I love you.

xx

My Beautiful Angel Pie

2008-12-13T14:41:00.000-08:00

Dave and I have taken turns in the hospital to make sure that we each get some sleep at home and consequently give our Mads our whole self when we are at the hospital. Sleep deprivation is just one of those things when you are on the ward as a parent. Tonight Dave is there with our angel.
She is doing well. We thought she might need a blood transfusion as her HB was only 8.1 yesterday.....but today the were 8.5 so well done Madelaine...no transfusion today because you are a strong little person.
Madelaine amazes me every single day. She is my Beautiful Angel Pie.......
xxxx

Poorly.

2008-12-11T11:56:00.000-08:00

Madelaine's temperature was 38.2 at 6:30 yesterday morning. On advice of the hospital, we gave her some Calpol to reduce her temperature. An hour later, we checked again and her temperature was still 38.2. After calling the Childrens Day Clinic at St James' , we were advised to take her in for the staff there to check her out.
Once there, it was clear that her health was declining; her temperature was infact increasing rapidly and her blood pressure was low. She was sleeping all the time. I think she slept most of the day yesterday. Her neutrophils had decreased to 0.11 from 1.63 over a few days.
She was seen by several doctors who expressed concern. Geoff Shenton, Madelaine's Consultant, was (as always) extremely calming and supportive. He informed me that Madelaine's health was unstable and she may need the support of the Intensive Care Unit. He told me that he and the Team would make sure that Madelaine would recieve the best of care. To be honest, I hung on his every word.

At that time, I was in bits; feeling scared and vulnerable. Geoff has a wonderfully calming way about him and I believe in every word he tells me.
Madelaine was indeed very poorly and all I wanted was to scoop her up and make her better.

Obviously............I can't.

It was decided that Madelaine should be monitored and treated within Ward 10 at St James'.
She recieved antibiotics and fluids. Her chemotherapy has been ceased for a time in order to allow her neutrophils to recreate themselves.

A day later, her temperature has settled down, she is eating, drinking, talking, watching her DVD's and drawing pictures and is like different child. I know she is still poorly, but being with her today has warmed my heart and I feel so much more reassured that she is getting better.

The staff have performed several tests that we are waiting results from to allow us to understand the infection she has.

I am so thankful for the amazing people who have been involved in her care at St James' Hospital. I am very reassured to know that she is recieving the very best of care and support with her treatment.

We are not sure how long she will be in the hospital. I guess it will all depend on how she is over the next couple of days.

So lets hope and pray .........

xx

Viral Infection

2008-12-09T07:09:00.000-08:00

Madelaine has a virus just now. On Sunday we whisked her onto the ward as her temperature flew. Her neutrophils were good at 1.63 though. However, 3 days earlier, her neutrphils were over 3. She had Vincristine on Thursday so we think that this alongside her virus is attacking her neutrophils. As such they are diminishing quickly. She had an overnight stay on the ward which she really was not at all happy with. Particularly as she had to be segregated from the rest of the ward to prevent the spread of her infection.
She is home now and due back in for a blood check on Thursday.
Lets hope her body is fighting back and her neutrophils have at least balanced out..

Well Done, Beth!

2008-11-24T03:19:00.000-08:00

Beth has raised £85 for Candlelighters by organising a sponsored walk. This took place at Yeadon Tarn and she was joined by her sisters and friends. Candlelighters have presented Beth with a certificate which is on our kitchen wall.
Well Done, Bethany. Me and your Dad are very proud of you.
Much Love xxxx

Miles

2008-11-21T07:52:00.000-08:00

Miles is a little boy who was diagnosed with Leukeamia within a week of Madelaine's diagnosis. His beautiful Mummy is called Wendy. Miles also has a handsome brother called Morgan. Miles is currently in the Bone Marrow Unit. He is very poorly. When you say your prayers tonight, please remember Miles. He and his family need all our prayers. xxx Thank you xxx

Hospital Visit

2008-11-21T07:46:00.000-08:00

Last Sunday, Dave and I had a panic on. Madelaine's temperature flew up to 38.7. We called the hospital who advised us top whizz her in. She is hadsome kind of viral infection and has been coughing and spluttering. W e were very concerned.
On arrival they took a sample of herblood for analysis. To our amazement, Madelaine's bloodcount was fantastic! Her neutrophils were over 2!!! We couldn't believe it. This is a great sign that Madelaine's body is fighting the virus herself! So we brought her home. She isn't well, but we are relieved that she isn't neutropenic and that she doesn't need a spell in the Ward.
Well Done , Madelaine. You amaze us every day. xxxxx Love you so much. xxxx

Cheeky

2008-10-20T23:57:00.000-07:00

When I picked Madelaine up from Nursery last night, she sat in the car telling me all about her day. She told me about all the the songs she had been singing that day. She asked me 'what shall we sing, Mummy?' I asked her to choose. She asked me to sing 'Heads, Shoulders, Knees and Toes'. So I did as she asked and sang it for her. She laughed and tried to join in and then, at the end of the song, she said, 'Stop Mummy, that WASN'T very nice'.............

Nice.....

Thankful

2008-10-20T07:13:00.000-07:00

I just wanted to say how thankful we are to have our little girl. We are constantly reminded how lucky we are; as everyday passes by she is learning something new and changing all the time.
And its just extremely humbling. I thank God everyday for Madelaine. I know there are families out there who have different experiences. Both Dave and I have felt completely helpless. We have depended on the wonderful people at St James' and they have been amazing.
Madelaine is doing so well. And we are blessed.

October Update

2008-10-15T05:37:00.000-07:00

Its been a while since I last updated the blog, so I apologise for the lateness.
Since the last update, the hospital have reduced Madelaine's chemotherapy from 100% to 75%. This is due to the fact that at 100% she was regularly becoming neutropenic. Since she has been on 75% chemotherapy, her blood counts have been really good. She hasn't been neutropenic, which is just fantastic. Last Thursday, Madelaine had her monthly Vincristine treatment. She always is a little under the weather after that and has been a liitle out of sorts. Alongside the Vincristine, she takes a 5 day course of steroids......and boy do we know about it...
It affects her mood swings and her appetite. She is eating EVERYTHING in sight. Food bills are increasing!!! Bless her...
She has developed a taste for dancing and wiggling her bottom to Music.....nothing in particular - it could be Mozart to Muse. She just loves dancing!
And we love watching her enjoying her little self, with her little wiggle.......

MacDonalds had a farm......

2008-09-10T07:45:00.000-07:00

Madelaine's neutrophils were just over the neutropenic threshold at 0.79. We were advised to start her on her treatment. Tomorrow, Madelaine has a visit to the clinic where is due some chemotherapy. Lets hope the chemo this week hasn't knocked her too much so she is neutropenic again. This will decide whether or not the treatment tomorrow will go ahead. My personal thoughts on this are that she is neutropenic. I doubt very much that she will have the treatment. I hope I am pleasantly surprised with her bloodcount tomorrow.
Madelaine has learnt a new song called 'MacDonalds had a farm...' God love her....I am sure she thinks its a happy meal farm....maybe it is!
xx

Update

2008-09-03T04:55:00.000-07:00

Madelaine's blood count last week was low. Her Neutrophils were 0.38 so she has been off her chemotherapy this week. Jill and Julie, our community nurses, came to visit today to check her count. Hopefully, her neutrophils will have increased and she will be able to continue with her treatment tomorrow. x

Neutropenic again....

2008-08-28T07:38:00.000-07:00

Just had a call from Miranda at St James'; Madelaine's neutrophil count was 0.38. She is neutropenic so we now have to stop administering her chemotherapy for the forthcoming week to allow her neutrophils to recover and increase. So we will need to keep an eye on her for the next week, I think. But she is still eating and drinking well, and is as cheeky as ever. As I write this she is eating an enormous cookie whilst watching ' The Incredibles' for the 3rd time today.....

Back from our hols!

2008-08-26T06:01:00.000-07:00

Well, Madelaine had a lovely time in Bridlington at the Candlelighter's chalet. She absolutely loved the beach and it was a joy to see her so happy. Everytime we get in the car now, she wants to go to the seaside..bless her. The weather wasn't too bad. We has a mixed bag, really. Raina and Beth both had a nice break too. They too love the beach.
Her health has been good. We had a little scare as the Nursery had a little boy with 'chicken spots', as Maddie calls it......The hospital have given Madelaine a jab that hopefully will prevent her from getting it. They have advised us that there are no guarantees though. But we are hopeful that she won't get it. I keep having to remind myself that I cannot put Madelaine in a bubble and protect her from the World...
We have the nurse visiting tomorrow to take some blood from her. It will be interesting to see what her blood counts are now.
Some days Madelaine seems just like any 2 year old and yet some days we are reminded that she isn't...
She is changing by the day; her hair is really growing now and it is quite thick. Her vocabulary has really developed and she natters away all the time and sings her songs (which is just gorgeous). Her potty training is coming on too and she feels very proud of herself when she has a pee in her potty! (she is going to hate me writing this in years to come!). Her character is really blossoming. It is very clear that she is an independant character, stubborn in nature with a very sweet, gentle side and a very cheeky sense of humour.

Seaside Bound

2008-08-01T12:10:00.000-07:00

Madelaine has been mostly well for the last few weeks. Apart from a couple of weeks ago. Her stomach swelled up and was very hard. She can now communicate verbally very effectively and told us that her tummy was hurting. As we are aware of the side effects of the chemotherapy, we took her to the ward for advice. The staff were (as usual) very attentive and Madelaine had an x-ray within a very short time. As it turned out, Madelaine was constipated and they gave her medication for this. We were pretty relieved as our imagination ran wild with us...
Madelaine is now doing well. However, she is neutropenic again and the hospital have advised that we take her off her Chemotherapy for a week. Her neutrophil count was 0.22. It may be an indication that she is coming down with something. She is a little pale but happy in herself.
Candlelighters have given us a weeks holiday in a log cabin in Bridlington at South Cliff. We are due to set off in the morning. Madelaine hasn't yet had a holiday so we are really excited for her.
I will bring Maddie back on Thursday for a blood count check and then drive back to Brid.

Speaking of Candlelighters, we have recieved a donation from the Customer Services Team at Linpac Packaging in Featherstone. I was lucky to meet all the wonderful people there. We have another 150 pounds for the Candlelighters Trust. One of the girls (Gail) is married to Paul who also has Cancer. They are a family who are also facing daily challenges in their lives. Paul is doing well and has recieved funding for his treatment now. He also recieves his treatment in St James'. So when so say your prayers for Madelaine, please take a moment and pray for Paul and Gail and their family.
As I said to Gail, I know the angels are looking after us all; making sure the Paul and Madelaine's lives are full of hope, love and laughter.

xx
Lisa

Back on track.....

2008-06-22T01:14:00.000-07:00

Madelaine is back on track again. Her blood counts on Thursday were good so she was able to start her chemo again. Just now she is also on a course of steroids and she most definitely feeling the side effects. She has mood swings and little mini tantrums and she also is constantly eating.
She seems to have so much energy at the moment and doesn't like to walk anywhere; she sprints...!I foresee a few little scuffed knees shortly.......

Back on the Ward

2008-06-05T05:22:00.000-07:00

Last Saturday Morning, Madelaine awoke and was sick as a parrot. Her temperature had risen to 38.1. I checked her temperature again after 20 minutes and it flew to 38.7. Needless to say, we took her straight to Ward 10.
She has now had 5 days of antibiotics on the Ward and another blood transfusion. Her blood counts aren't great but she has now had her chemotherapy stopped for a week or so to help her body recover.
She has now been discharged from the hospital and is due in the clinic next Thursday for a check up.
In Maddie's bay on the ward, there were Loui (who is 5) and Anisah (who is 10 months old). Both are adorable little children, who both have cancer. There are lots of new names on the Ward, and lots of new families who are feeling the pain.
It is a problem that isn't going away; Cancer isn't ageist, sexist or racist.

What is wrong with some people???

2008-05-22T02:17:00.000-07:00

Yesterday I took Madelaine to the Clinic for some more treatment. After talking to Natalie the Play Leader in the play room I was horrified to learn that the 'wii' that the kids play on in clinic has 'gone missing'. In other words it has been stolen.......
The only kids that go to clinic are kids with cancer......who would steal that away from poorly kids??????

Some people have no soul or conscience. Its despicable.
Any money I raise from my sponsored detox is going directly to the playroom.
So if you fancy donating, drop me a line at pandahowe@hotmail.com

Thanks everyone.
Lisa
x

Wind the Bobbin Up...................

2008-05-22T02:05:00.000-07:00

Well, our little Madelaine has now started Nursery for a couple of afternoons a week. She has now been going for 3 weeks now. She came home this week swinging her arms around singing 'Wind the Bobbin Up' and clapping.........her first Nursery Song!!!. Just bloomin' gorgeous.........
She is still on Home Maintenance and she is doing fabulously well with her treatment. Her hair is growing too. It lookslike she has a crew cut at the moment...I am looking forward to her hair growing and putting pretty ribbons in it...
She is talking non-stop and loves to dance and sing (of a fashion!).
She found it difficult at Nursery at first as she hasn't really any experience with playing with other children apart from the children on the Ward or at the clinic. She is still slowly coming out of her shell as far as her playtime social skills are concerned. I am sure, though, that this will soon change and she will learn to relax and build relationships with the other children at the Nursery.
Martin, our Macmillan Liaison Nurse, visited the Nursery to give the staff an overview of her illness and issues surrounding it. The staff found it helpful and I feel more reassured too.
The staff are wonderful with Madelaine. Her keyworker is called Sam and Madelaine has really bonded with her which is wonderful.
So times are changing, the sun is in the sky, and my little girl is growing up......

Life's good. xxx

Fulneck

2008-04-28T00:44:00.001-07:00

Dave and I went to Fulneck School in Pudsey for a look around. We would like Madelaine to go there. What a wonderful school! For some some reason I was a little nervous before I went. I felt a bit like a schoolgirl myself when we first arrived! The school itself is quite traditional. Its not a modern building and it is set in the most gorgeous grounds overlooking fields of green. All the children looked so smart in their uniforms and were very well behaved. We were shown around the nursery and the Junior School. The children were having so much fun learning! Its just the atmosphere that Madelaine will flourish in. The staff were very friendly and open. Both Dave and I loved it. I fell in love with the school and I so want Madelaine to go there even more now. She will love it.

Home Maintenance

2008-04-24T06:03:00.000-07:00

Madelaine is now on Home Maintenance. Madelaine now only has the visit the hospital every 4 weeks. Today she had her Vincristine chemotherapy and she begins a 5 day course of steriods. Her neutrophils were a little low so they have reduced the chemotherapy that we administer at home by 50% in order to try and give them a chance to improve. It has wiped her out a little and she fell asleep in the car on the way home. She was nattering about having sausages for her lunch, so they are cooked and ready and waiting for her to wake up...!

Thank you to Jean and Uncle Don!

2008-04-24T05:53:00.000-07:00

Thank you Jean and Uncle Don for your donations to the Candlelighters fund! Mum gave me it yesterday.
Have a lovely holiday! xx

Happy Birthday, Madelaine!

2008-04-13T12:54:00.000-07:00

Madelaine was 2 years old today! Even though she keeps telling everyone that she is 7!!
She has had a lovely day and lots of the family have been bearing gifts and cards. At the moment she is sparko in her cot. All that playing takes alot out of a little girl........xx

So far so good

2008-04-08T01:39:00.000-07:00

Madelaine is due to the clinic on Thursday for a Lumbar Puncture and some bone marrow taking from her for analysis. She is coming on wonderfully. Her hair is growing back a little and it looks quite fair this time. She is becoming cheekier by the day and her mobility is great. She is wanting to walk everywhere and ocasionally attempts to run......
She definitely has her own sense of humour, that is no mistake and she loves to laugh.

On Maintenance at Last!!

2008-03-28T01:33:00.000-07:00

Madelaine started her Maintenance block yesterday. Its a real milestone for us. I shed a tear in the clinic yesterday. I am sure the staff think I have screw loose somewhere. The relief at getting through her intensification blocks is immense, We are looking forward to the summer more than ever. x

Home

2008-03-26T01:01:00.000-07:00

Madelaine is home and, all being well, she should be starting her Maintenance Block tomorrow. She seems well just now. She is laughing, eating well and being very, very cheeky. Just as she should be. We are going to visit the park later today and have a play on the swings. She loves it. I think we have a little thrill seeker on our hands. Please Madelaine, don't get into extreme sports when your older. There is only so much a Mummy can take, you know!!! x

Back in again

2008-03-18T08:17:00.000-07:00

Madelaine's temperature spiked to 38.0 yesterday and she quite unwell. She seemed to be aching all over and she was crying as she didn't quite know what to do with herself. Her nose and eyes were running too. We took her to the day clinic where they took samples of her blood for analysis. Not surprisingly she was neutropenic. Her neutrophils were 0.16.
So we are back in the Ward for another few days. Madelaine is to have a course of antibiotics to give her a hand getting rid of whatever infection is inside her. We are awaiting results of what it is she has.

Despite all this, she is still a little gem. Still mischievous and full of fun. Hopefully she will be home on Friday or Saturday

Intensification Block is Over..

2008-03-16T07:03:00.000-07:00

Well, Madelaine has now had the last of her chemotherapy within this last intensification block of treatment. Its quite a milestone for her and for for us as a family.
She has a week off any treatment and then begins her Maintenance treatment for the next 14 months.
She has been wonderful. She is currently eating segments of orange whilst watching one of her favourite DVD's 'In the Night Garden'.
We know that her journey is by no means over, but she has come so far since her diagnosis nearly10 months ago.
We are very proud of her and so very thankful for all the love and support we have recieved throughout her illness so far.

Not a care in the world.....

2008-03-12T05:05:00.000-07:00

Madelaine today is just super. She is giggling at everything and is mischievious and talkative. Just like she should be.
The intensification block finishes in 5 days time and Dave and I are counting down the days. After that she has a weeks break from medication and the she starts 14 months of Maintenance treatment. The maintenance is a nice and steady treatment and previously when she has been in Maintenance she has built up her strength and developed beautifully. So we are hopeful that this continues to be the case.
Monday is a milestone for Madelaine and for us as a family. It is the beginning of a new chapter.
At the moment she looks like she hasn't a care in the world; eating sausages and watching Happy Feet for the umpteenth time....

Back at home

2008-03-05T00:49:00.000-08:00

Madelaine is now out of the hospital and at home. She restarts the chemotherapy tomorrow.
She is full of fun just now and is eating everything in sight.
Its almost like she knows that the intensive treatment is almost over. We see more and more of the fun Madelaine. She is coming back to us now.
Once this is intensive treatment is over it will be such a relief. Madelaine has come a long way since she was diagnosed and she is still smiling.
Roll on summer when she can play outside in the sunshine in her paddling pool in her little cozzy.

Back on Ward 10

2008-02-23T09:40:00.000-08:00

Madelaine came out of hospital last Saturday. She completed a 5 day course of antibiotics. When she came home she didn't really pick up. She never really moved from the sofa and had no interest in walking or even crawling anywhere on her own. Like having a little baby again. On Wednesday we spoke with the clinic and Martin, our Liaison Nurse came to see Madelaine and take a sample of blood for analysis. It seemed that her bloods were fine. Her neutrophils were 0.96 and her HB was 12.4. I was relieved at her counts and we all thought that the influenza must be the cause of her lack of energy. At this point she hadn't experienced any high temperatures.
This was was shortlived. Yesterday lunchtime (Friday) she was on the sofa again and just looked so weak and poorly. Her temperature soared from 37.4 to 38.4 within 30 minutes.
She was admitted to Ward 10 and has started another course of antibiotics to try and fight whatever infection is inside her. Her neutrophils plummeted to 0.08 so they cannot fight whatever is there. We are now awaiting results from blood cultures to try and identify what and where the infection is.
I will be saying an extra prayer for my baby tonight.

Mummy's Thoughts

2008-02-18T08:57:00.000-08:00

No-one ever tells you how scared you will feel or how helpless. The staff at the Hospital can't tell you that because they don't know. Last night Dave and I cried together as we watched out little girl lying there on the sofa, doing nothing. She looks so pale and fragile. She is sleeping all the time. She has no energy at all. Not even to lift her head from the pillow. I am frightened. I know the chemotherapy has completely wiped her out. I know the reasons why she feels the way she does, but it doesn't make it any easier to watch her looking so vulnerable and so poorly.
I just wish I could do something for her. I want this to be over. I want my Madelaine back.

Flu

2008-02-15T01:40:00.000-08:00

Madelaine has Flu. She has now been moved onto another ward and into her own room to protect the other children from getting it. She seems ok in herself but she is still infectious. I panicked at first but Mark (the Charge Nurse) has reassured me that its ok and nothing to panic about.

Back on the Ward.

2008-02-12T09:27:00.000-08:00

Madelaine's temperature spiked yesterday at 38.5. One second she was playing happily and nattering away and within minutes she became very hot and lethargic. Suffice to say, she is now back on Ward 10. After having her blood count taken, it was clear that she was neutropenic. Her neutrophil count was 0.32. Today her neutrophil count is 0.24. She also had a little nosebleed today which could possibly mean that her platelets are low. Sarah, our nurse today and the student nurse, Donna, checked her platelets and they are 149. We have seen it alot worse, but we have also seen it quite alot higher.
It has been quite some time since we have been back on the Ward. It seems a lifetime ago. Sadly, there are lots of new faces on Ward. It brings it all back. Even though we knew that it was possible that Madelaine would not be well, its still difficult watching her deteriorate. It doesn't really get any easier.
I am very positive, however, that she will bounce back, just like she has before.

The last Intensive Block begins...

2008-02-04T06:16:00.000-08:00

Well, Madelaine has now started her 2nd Intensive block of treatment. Her neutrophils were 0.88, just over the 0.75 limit. She started 5 days ago and she already is losing her energy and feeling unwell. Her hair is disappearing too. I worry about her. She has been so full of life recently and it breaks my heart watching her. But still, the treatment will soon be over and we can get on with being a normal family doing normal things together. She's a peach, that daughter of mine. She's still cheeky. xx :-)

Intensive Block Number 2....almost....

2008-01-16T05:40:00.000-08:00

Intensive block (number 2) was supposed to start today. However, Madelaine's neutrophils were too low. At first I felt relieved but it soon turned to concern. She has had a week off mercaptorpurine (the chemotherapy that we administer orally at home). We hoped that her neutrophils would have recreated themselves and increased, ready for the block. I wish I had asked the doctor more questions now. I will next time. (Note to self - ASK MORE!). I worry when I don't know the answers. So I worry most of the time!
Apart from this hiccup, Madelaine is learning so much. She has much more confidence with her walking and she can now talk the hind legs off a donkey. Her appetite is huge and has a penchant for Happy Meals ('Burger and chips, please, Mummy. Soon.')
I want this intensive to start and be gone. The sooner it starts, the sooner it finishes.

Khadija

2008-01-02T14:06:00.000-08:00

I feel a little low right now. A little girl called Khadija whom we met on ward 10 passed away. She was 10. She played with Madelaine in the playroom sometimes. She was a beautiful little girl; very kind, talkative and very pretty. And always with a sparkle in her eyes and a smile too. My friend Wendy (whose little boy, Miles, was in Intensive Care at the same time as Khadija, and is now doing very well at home and begins a maintenance block of treatment very soon) called me to tell me the news.
I spoke with Khadija'a mum many times on the ward when we wandered up the parents kitchen, not exactly knowing what day it was or why this had happened to our babies and both of us needing an ear to listen and a hug.
I cannot bear trying to feel how Khadija's mum feels. It's too much for my heart to feel. I am just so very sorry and so sad that such a lovely, beautiful, young life has gone. And I feel so much heartbreak for the family.
Khadija. Rest in Peace, sweetheart. It was such a pleasure knowing you and your family. x

2007 almost over......

2007-12-29T12:53:00.000-08:00

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!

2007-11-18T07:51:00.000-08:00

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

2007-11-04T10:40:00.000-08:00

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.....

2007-10-22T13:39:00.000-07:00

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

2007-10-18T09:16:00.000-07:00

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!!!

2007-10-10T06:29:00.000-07:00

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

2007-10-05T08:54:00.000-07:00

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!

2007-09-28T23:44:00.000-07:00

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

2007-09-24T03:09:00.000-07:00

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.....

2007-09-10T07:52:00.000-07:00

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

2007-08-28T12:14:00.000-07:00

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.