Update!!

Lauryns neutraphils finally reached the dizzy heights of 1.2 on Thursday so we had a nice rest from hospital on Friday!! Her bloods were done today and everything is fine to start next block of chemo tomorrow-FINALLY!!! HOWEVER, Lauryns neutraphils have dipped again to 0.9 and she has a bad cough, which is still ok for chemo but indicates that she may have an infection brewing, alongside this, we have been told that theres a fair chance that we may get to Addenbrookes in morning and be turned away because of the cough and the anaesthetist who puts her to sleep may refuse to do so. Bit annoying really, seen as how tomorrow kicks off with a 'special sleep' (General Anaesthetic) so chemo can be adminstered into Lauryn spine, which means we have to be in Cambridge by 8am (setting off at about 6.30am) so is an early start, plus, as her chemo has been delayed so many weeks already, I am anxious that it must start tomorrow.

Lauryn has 'special sleeps' quite often, as its the only way to assess the bone marrow and give certain types of chemo straight into her back. This block of chemo involves alot of chemo including Methotrexate being given every 10 days straight into her back.  She will also have cyclophosphomide infusions, but that is done without special sleeps. They escalate the chemo in toxicity each time until it makes her unwell and/or her blood count drops too much. Is not a nice block because it can make her very poorly and lethargic.

She has Bone Marrow Aspirations regularly, and everytime is as nerve wracking as the first, you always want the 'remission marrow'. Special Sleeps dont get much easier either. General Anaesthetics are risky as it is for anyone, so I always secretly dread her having them, especially when sometimes they are done weekly. Anyone who has ever been with their child while they are put to sleep will know its not a pleasant experience at all, which is sometimes made harder when Lauryn fears them. Some weeks she thinks its great that she gets to have a 'nap' especially after a long, early drive to Cambridge !, but other weeks shes less enthusiastic and gets scared because she doesn't like being made to go to sleep when shes not tired. This ends up in a bit of a struggle as the anaesthetic kicks in and is not a nice thing to watch.

Anyway, Dezzie had a day off today so after the community nurse came to do Lauryns bloods, we went out and had a lovely day at the park, we took a picnic and allowed Lauryn to take her scooter (after making her promise that she would actually use it rather than get fed up and have us carry it!) and sat in the sun for the afternoon. Both girls enjoyed themselves on the swings and slide etc, as did Mummy and Daddy! Was so good to have a beautiful day today as we know we will be stuck in hospital for the next 3 days...

 

Belated Post!!

Well, I just realised its been almost a week since I last posted. Not much has happened to be honest, I just haven't got round to getting on the laptop for long enough to update!
I have found, also, that sometimes I don't like writing here because I like to forget whats going on! Its going to sound stupid, but we come across days where Lauryn is her old self, and we (well I) like to keep away from anything oncology related and almost pretend that we are a normal family..... haha!!

We have been to pboro every day for a week and a bit for anti-biotics, as Lauryns neutraphils have still not recovered from the battering they have taken from the chemo and the infection (whatever it was). So they have been, up to today that is, 0.1. However, today they are 0.3!! As soon as they get to 0.5, we can stop going for the anti-biotics!

Had a bit of a panic, as I often do, because Lauryns next stage of chemo has obviously been delayed for a 2nd week due to low count. This has happened before and each time, I always worry...silly really because the doctors never seem concerned, but I think that if shes not on chemo, then it may come back? I start checking for signs, and yesterday got Dr to feel her tummy incase her liver might be enlarged. It isn't. I often feel that this is never going to get easier. I find myself worrying most of the time about it all, and It scares me to think that next year the treatment will be finished and I won't have any reassurance that chemo is starting again. Trying to remain positive almost drains you sometimes, but is a necessity in this situation!!

Glad to say, Lollys weight is no longer an issue, she is now eating more and more and her weight has crept back up to 19.4kgs which is a reasonable weight to be at this stage.

Mothers Day was lovely, we had the morning in hospital for anti-biotics, then went for a yummy carvery meal with our families after at a local pub. Although, it is a hard situation, I do feel so grateful to have two gorgeous daughters, and that Lauryn is well enough that I can enjoy special occasions like Mothers Day with her. xx

Weight.....

Second day at pboro for anti-biotics today, arrived at 11am after having a quick look round Peacocks for some 'pretty summer dresses'.  As the sun has come out, so do Lauryns dresses. Yesterday she managed to squeeze herself into her favourite pink party dress that she wore for her 4th birthday party....so off to the shops we went to get her some better fitting ones!

When we arrived at the hospital I was told that although Lauryns platelets are not at their lowest, it was agreed that she would still have a platelet transfusion today because of the bleeding gums and bruising i pointed out yesterday. Its amazing how quickly you pick up on and begin to recognise these symptoms.

So anti-biotics diffused, afew fluids and then a platelet transfusion later and we were on the way home.  Today does bring about a new issue though, as Lauryn was weighed today. We were given a 'cut off' weight at the beginning of treatment, based on Lauryns height etc, which was 18kg. If she goes below that, she will have to have an 'NG tube' which is basically a tube inserted through the nose down into her stomach so that she can have artificial feeding straight into her tummy.  I have always dreaded this, as the tube is put in with her conscious and I am not looking forward to her having to go through that and having to watch it happen. Todays weight is 18.5kg, which means she isn't starting the new block of chemo well and will more than likely end up with a tube. 

I was told early on that the majority of children on Lauryns regimine have to be tubed during the intensive parts in the first year so I should prepare for it. However, somehow, Lauryn has managed to avoid having one, which the doctors have said is excellent, as there are many times along the way where treatment renders her too nauseous, her mouth too sore, her appetite wanes, or generally just too unwell to eat. The dieticians advice is, as always, throw all your healthy eating out of the window and give her as much fatty, high calorie foods as you can. Yes, all those years of getting her to eat healthy and limiting junk are undone while she is on this treatment as the fattier and junkier, the better!! 

Therefore, my mission over the next week or so is to force as much fatty food down her as i can....normally not a difficult task, but at the moment, post infection and illness and with a sore mouth and throat, its proving a real battle.  

ARRRGGGHHHH!!!

Starting to realise that this blog is becoming a place where I constantly moan....oh well!!

We had a bit of a frustrating day today courtesy of unorganised hospitals! Whats new there?! Day started with me going to see the dentist as I've had toothache since last week, but not been able to make it in to get it sorted as was in hospital with Lolly. Going to dentist not really that bad tho, because he is rather dishy....anyway, apparently my wisdom tooth is coming through and because I cant have anti-biotics, thanks to boob monster Evie, I will have to grin (haha) and bear it til it makes an appearance.

Had rung the ward today to tell them we would be there at about 1.30 for Lauryns anti-biotics, due to getting out of dentist later than anticipated, we arrived at 1.45 to pboro childrens ward. Ward was full, so we were taken to the parents 'suite' (comprising a bed, chest of drawers and bedside cabinet) to wait.....and 'wait' we did.....it was 2 hrs before ANYONE even came to see us. Apparently there had been a mix up with medicines....great. I hate that room anyway due to it being the place where the leukaemia was confirmed by the laughing doctor back in July. Plus, the room was stuffy, boiling hot (we were sweating), couldn't open the door (because Lauryn neutrapaenic she has to be isolated), with no tv or anything, needless to say both girls were getting fed up and so were we. Lauryn decided she wanted to play hide and seek.....she gave up that idea when she realised she could actually only hide under the bed! 

Whilst waiting, I discovered that Lollys gums started bleeding (sign her platelets might be low), she complained that she had a sore throat and that she has a funny white stuff on her tongue, so asked doc to check it all out. Still waiting for blood results and swabs to be tested....

Also spoke to another mum who I regularly see, she has a 13 yr old son who has Leukaemia and amongst the moaning we were doing about everything, she told me I need to look into getting in touch with Clic Sargent to arrange one of their holidays. She went to Scotland and said it was lovely, so I will definately get it booked at some stage, I think we all deserve a little break! 

Coming Home?!

We were due to start Lauryns new block of chemo today-the Capizzi block, but it requires her to be fit and healthy with a high blood count before she starts.  The basic aim of the Capizzi, is to give her chemo every 10 days for 8 weeks, with the level of toxicity escalating until she gets too unwell to tolerate anymore...lovely. Today was supposed to be the first of a 3 day week of strong chemo, but unfortunately we are unable to start til she is better, so chemo being delayed.

Lauryn has hospitalised since last tuesday night, when we rushed her to our local (Peterborough) in with a high temperature. As you probably know, due to the chemo, at specific stages through her treatment, her blood count is extrememly low and she can go down to as little as 0.01 of a neutraphil (part of the white blood cell that controls immunity), so even a cold will send her temp soaring and means hospital on anti-biotics for 48hrs minimum, with 24 hrs of a clear temperature.  This accounts for our many many MANY trips to hospital!!

Is very difficult to see your little girl so full of energy and normal one minute, then literally within the next 5, she is lethargic and unwell. Must be even worse for Lauryn, having had a bath with her sister and being put to bed, just drifting off when Mummy comes in, puts a thermometer in your ear, drags you out of your cozy bed, gets you dressed and ships you off in the cold to a busy, noisy hospital. 

So tues, anti-biotics administered, but by Saturday Lauryns temp was still 'spiking' which means it was still above 38 degrees, so we were transferred by ambulance to Addenbrookes for further tests and stronger medicines. By sunday, Lauryns temperature had stabilised and we are now 

waiting for the doctors to release her!!

15.49pm

So the doctors' given us a pass home, we have to take Lauryn to Pboro hospital every day to have anti-biotics-thats fine, as long as we get to stay at home and she remains temperature free!!! Wooohooo, my dad has gone to pick them up because Evie isnt allowed on the ward at all, so should be back home for cuddles abit later this evening!! Cannot wait!! Back to normality for a little while, bathtime with the girls, bedtime cuddles and arguing over bedtimes (!), definately stuff you take for granted when your stuck in hospital. 

I have stolen this poem from another childs blog from C2, it was written by a parent of a child with a rare cancer AT/RT. I'm putting it on here because I think it completely and utterly sums up life at the moment and how it feels:

"Just for this morning,
I am going to smile when I see your face
And laugh when I feel like crying.

Just for this morning,
I will let you choose what you want to wear,
And smile and say how perfect it is.

Just for this morning,
I am going to step over the laundry,
And pick you up and take you to the park to play.

Just for this morning,
I will leave the dishes in the sink,
And let you teach me how to put that puzzle of yours together.

Just for this afternoon,
I will not yell once, not even a tiny grumble
When you scream and whine for the ice cream truck,
And I will buy you one if he comes by.

Just for this afternoon,
I won't worry about what you are going to be
When you grow up,
Or second guess every decision I have made where you are concerned.

Just for this afternoon,
I will take us to McDonald's
And buy us both a Happy Meal
So you can have both toys.

Just for this evening,
I will hold you in my arms
And tell you a story about how you were born
And how much I love you.

Just for this evening,
I will let you splash in the tub
And not get angry.

Just for this evening,
I will let you stay up late
While we sit on the porch
And count all the stars.

Just for this evening,
I will snuggle beside you for hours,
And miss my favorite TV shows.

Just for this evening
When I run my finger through your hair as you pray,
I will simply be grateful
That God has given me the greatest gift every given.

I will think about the mothers and fathers who are searching for their missing children,

The mothers and fathers who are visiting their children's graves
Instead of their bedrooms,

And mothers and fathers who are in hospital rooms
Watching their children suffer senselessly,
And screaming inside
That they can't handle it any more.

And when I kiss you good night
will hold you a little tighter,
A little longer.

It is then,
That I will thank God for you, and ask Him for nothing,
Except one more day!~

HELEN STEINER RICE ~

How we got here!!!

Lauryn was diagnosed with Leukaemia on Monday 7th July 2008. 

To be honest though, I already knew, and it only confirmed what I had been worried about since her birthday party 2 days before.  

We had taken Lolly to the docs about a week after Evie was born because her tummy was so bloated, she looked pregnant.  That was really the only reason at the time....looking back, it all adds up.....the bruises she was covered in, we all reasoned were down to her being a normal active child who bumped herself and the blood spots that had come up were put down to her having a cold by the practice nurse. 

The GP said that he could feel Lauryns liver was enlarged and that he would refer us to the outpatients but that it would take 4-6 weeks.  We got on with life as usual because again we reasoned 'if it was anything serious the doctor would have her straight into hospital', Lauryn went to school, she competed (well!) in  sports day and she had her 5th birthday. 

On the morning of her 5th birthday party, on a gorgeous hot sunny day, I was getting the garden ready for 30 children (!).  I got a call from the hospital who wanted to see Lauryn that Monday.  I also got a call from Lauryns dad who told me he had been googling enlarged livers on the net and that there were afew causes....one being leukaemia.  Seems stupid but as soon as he said it, I knew it was that, and I cried.  So Lauryns 5th birthday party was completely tainted by the fear of what was to come that monday, despite friends and family telling me she was far too energetic and healthy to have cancer as she was bouncing on her bouncy castle!!!

So monday arrived, and I picked Lauryn up from school at lunchtime to take her to the appointment at hospital. We went straight to the outpatients, she was examined and were told that they were going to give her a blood test. Richard and I knew then straight away what they were testing for even though they didn't actually tell us at first. The doctor then said they were looking for Leukaemia, along with other malignancies because something wasn't right....she ran through the possibilities and said that out of all of them, Leukaemia would be the 'best outcome'. I can remember actually praying it would be leukaemia....how weird is that...praying that your 5 yr old child has leukaemia?! We called mine and Richards parents and we all sat waiting while Lauryn played happily in the playroom, oblivious.

When the results came back, the doctor called me and Richard into a room at the hospital that is used to accomodate parents and sat us down.  He confirmed it was Leukaemia and must have been nervous because I remember he did a weird laugh noise as he told us and it made me mad! I didn't cry, I don't know why because everyone else did and it annoyed me! I felt quite calm, but like something was gone, life had changed forever, an extremely terrifying, awful feeling. 

Next thing is that we're being sent straight to Addenbrookes, arrived at about midnight (?) staying in the coldest room we have EVER been in....otherwise known as an isolation booth....a bloody fridge!! We had a quick tour of the ward (our new home for the next month), and somehow got a bit of sleep...The next few days were a complete blur of endless tests, machines, the first of MANY 'special sleeps' and results. I can honestly say, we have never been so up and down emotionally and it finally took its toll on the friday when i ended up in Addenbrookes A and E, on the brink of collapse. 

Lauryn has Acute Lymphoblastic Leukaemia (ALL). Its a form of cancer that affects the lymphocyte producing cells in the bone marrow.

She has been on chemotherapy for 9 months (since 8th July 2008) and has 2 yrs treatment in total.  The first year (which ends Summer 2009) is the intensive part and after that we move onto Maintenence where Lauryns hair will grow back and she will, in theory, return to 'normal' and not be in hospital as much. Lol!! We shall see.....!

I am so proud of my little girl, she rarely complains about the situation that has been handed to her and astounds me every single day at how brave she is, being taken away from her normal life to one that involves countless injections, blood tests, transfusions, hair loss, weeks spent sat in a hospital bed, appearance change, aching body, sickness, headaches....that no child should ever have to endure.

Exiled from hospital!!

Today started ok,  Evie slept at Acorn House with Dez all night so I was able to spend time with Lauryn. Unfortunatley, Evie now has green poo's and was sick this morning so has been banished from the hospital and Lauryn is being 'barrier nursed' because she has a loose tummy too..... Consequently, due to breastfeeding, I have to go home with Evie and have left Dez there looking after Lolly, which isnt easy, i hate leaving her when she is in hospital. Since I havent been able to physically split myself in half, or get Evie off the boob, i guess its how it will have to be...!