A difficult few months..

Lauryns latest scan results have shown a slight improvement with the Aspergillus, so even though, after 7 weeks we were secretly hoping that it would have all gone, its better than the infection getting worse....so we're now in for the long haul and daily IV's til at least January. The next scan is booked for 18th December (Just in time for xmas..thanks!) on her ankle because the thought process is that if the infection is clearing from there, then the lungs should also be clearing. Myles (Lauryns consultant) has said that he has to be sparing with how many scans he puts lauryn through because of the radiation, and because she will be having scans alot for the next year of treatment, he does not want her exposed unnecessarily.

The Aspergillus has completely knocked us for 6, I think we were guilty of becoming a little too complacent. We were told that when Lauryn got to maintenence stage, things would get easier...she wouldn't be as sick and that life would begin to take on some normality. This was true for the first week or so but then the aspergillus hit and we were reminded once again that this is serious. It reminded us that we could still lose Lauryn at any moment. I know that sounds dramatic, but that really is how it goes. People joke about swine flu etc, its no joke to us, its a real threat. The other issue with the fungal infection is that because it is so difficult to treat, Lauryn is not able to continue some of her chemotherapies, in fact about half of them have been stopped until the infection clears completely as they can make the fungus worse. This is a major worry to me, as our consultant explained, they have to get the balance between treating the fungus but not getting to the point where they aren't treating the leukaemia. To put it in perspective, the fungus is more threatening to Lollys life then the leukaemia at this point in time.

Obviously, it is a major worry still for my little girl to have this awful infection, I think I took it for granted that once her temperature had settled all those weeks ago, it meant the lungs would be fully cleared....but this infection is so difficult and nasty it really is going to take a loooonnngggg time. It is also a major disruption to our household because the treatment is daily and takes about an hour and a half which at the moment is being done smack bang in the middle of the day because its the only time our community nurses can come out, and when they arent available, we have to drive half hour to our local hospital to have it done there. Not ideal at all. We are all experiencing major cabin fever and I am literally becoming the housewife from hell!! After spending pretty much all day every day cleaning and tidying the house, I scream at the kids constantly and poor Dez as soon as he comes through the door in his steel toe boots!! Our only real option now is for Dez and I to become Lauryns 24 hour nurses, and to learn how to give the IV's ourselves!! Up til now, I have never wanted to give Lauryns IV medicines as it is a very risky, dangerous procedure...just to clarify, the medicines go straight into lauryns heart. That is where my worry lies! But, now I really don't have a choice, it will improve the quality of our life and i am sure that it will become second nature after a while!

As I have become quite hermit like I have found that I have become quite obsessed with both fund raising and also carrying out research into a possible link between pylons in Bourne and leukaemia. This has all come about as there have been 2 other cases of the same childhood leukaemia as Lolly in this small town in the space of a year, all 3 located within close proximity of each other, and within 200 mtrs from a pylon...it will probably amount to nothing, but I feel I'm now at the point where I can't back away from a possible cause of my daughters illness and if it saves another family going through this hell, then it is well worth the trouble!

I have also become an avid member of our local gym!! I need to try and lose weight for our wedding (which is getting scarily close i might add-June), so I now go 3 times a week and also to Legs, Bums and Tums which is quite literally an hour of pure torture! I am finding it sooo therapeutic though and feel almost normal while I am surrounded by healthy gym goers!!

Now, as a few of you will know, Dez and I are getting married in June, and up til now we've put the wedding on the back burner because we simply do not have the time or energy to plan, but as the date is getting closer, we decided to brave a wedding fayre and have managed to book most things so feel less panicked!! I have also decided on and ORDERED!! my dress!!! ! We got Lauryn to try a flower girl dress on, which promptly caused Nanny to cry and me to choke back a tear as she indeed looked like a princess. I am beginning to get silly excited about it now, tho i am being cautious because I am aware that we have a long way to go in terms of Lauryns health before we can fully relax and look forward to a relatively stress free wedding!!

I'm finding myself struggling abit at the moment, my emotions seem to be quite unstable and i hate that. I try to occupy myself with all sorts but sometimes it all just hits me. I felt it more so recently as I've watched Pride of Britain awards and Children in Need. I previously would have watched these thinking how unimaginable it would be to have a child that is so poorly, and this year I realised that my daughter is now the reason that these things exist and that is heartbreaking. You wouldnt wish this on anyone, but at the same time you wonder why it has happened to your 6 year old daughter who has never hurt anyone, and you begin to wonder what it is you have done to deserve it. I know it sounds like im feeling sorry for myself, believe me I dont often get like this but when I do, it overwhelms me.

One of the best things to come out of this situation is the friendships I have made along the way with other oncology parents. I can honestly say, these friendships are some of the best I will ever have and I am so glad I have met such brave, wonderful people. Even on a social network like facebook, you can get support from other parents experiencing the same as you, and each family is linked to someone that you know from the hospital. You get to know the same parents and children and attend days out together, its like a close knit community that I didn't want to be part of at first, but have now come to love and rely on. Especially in my thoughts are Megan and Gracie, twins who were both diagnosed with the same leukaemia as Lauryn and their lovely family. My heart really goes out to them as I know how difficult it is just having one sick child, let alone 2. Parents who have children with cancer have special connections that makes us unique and able to understand what the other is feeling, I have never known such friendship and a feeling that you have an extended family in some ways! There are times on the ward where you can just sit in the parents room and chat, laugh and have a glass of wine together, you meet up in the hallways or whilst standing outside the sluice room gloved up clutching a bowl of your childs nasties and have a quick chin wag and giggle! And then there are times when the ward is silent because a family has lost a child or has been given bad news, and you all share a knowing look and feeling of complete devastation for that family. These are the times when you feel a compulsion to walk up to them and just put an arm around a shoulder and let them know you are there. I remember when we were last in Addenbrookes with Lauryns aspergillus, those first few days I walked out of her room and was met by a mum who I have known since we first shared a bay last year, she asked how lauryn was doing and I told her not good, then proceeded to say that I couldnt bare to sit and have any more bad news in 'that room', that I didnt think i had the strength and she simply put her arm round me and said 'yes you can and you will'. I will never forget it because I then knew I had to do it. Thankyou for all of your friendships. x

Update-OCT 09!!!

Well its been a while!! Few reasons why, we moved house and did not have internet for (too) many months...bloody talk talk. The other reason is because we have been in and out of hospital recently so have not had the time or inclination to sit and gather my thoughts!!

Lauryn started maintenence Chemo in August and all was going well, she even managed going back to school for the start of September and I mustered the strength to make it back to work. I felt better as Lauryn felt better. I dared to look to the future and get on with life as everything seemed to be quite 'normal' and reverted to how we had left it in July 08, school runs, packed lunches, washing school uniforms, work etc... we started to get excited about our long awaited weeks holiday to Dorset as arranged by Lennox Childrens Cancer Charity on the 19th Sept.

However we hit a slight hurdle on Sunday 13th September when Lauryn developed a temperature and was taken into Pboro hospital for 4 days. She had got a bad chest infection and needed anti-biotics to clear it. On the thursday, she was discharged but still had quite a bad cough and wasnt quite right....

Still, we went away on the 19th Sep to Dorset, and enjoyed the best 2 days we could have hoped for, but unfortunately Lauryn still was not right, she remained lethargic and developed bad pain in her ankle to the point where she could not walk properly. On the Monday we had been on the beach all day where the weather was amazing for September, and took the girls swimming on the complex, but that night (21st sep) after lurking for 2 days with the thermometer, Lauryn got a high temp again. We were all so disappointed as we were all really enjoying the break and had been looking forward to it for a year! We took Lauryn straight into the nearest hospital and were then transferred via ambulance to Poole hospital where we remained for 2 more days.

During the time at Poole, Lauryn became completely immobile and could not weightbare on her right foot, her ankle was red, hot and swollen, and an MRI showed up as abnormal. On top of this Blood cultures had shown Aspergillus in her bloodstream. Aspergillus is a fungal infection that creates lesions that eat away at the organs. It is notoriously difficult to treat, and is not known to be found in blood cultures unless a patient is extremely poorly and the main organs are so full of the lesions that it has leaked into the blood stream. Her temperature continued to spike and the decision was made to transfer us back to Addenbrookes. So after 3-4 hours in the ambulance and a few cheeky blue lights when we saw traffic, we arrived at Addenbrookes!

The next few days proved to be the most difficult I have had to deal with since diagnosis, and to be honest this was probably worse. Due to the fact that Lauryns temp had not settled at all and the Aspergillus was presenting in her blood stream, the doctors were extremely anxious at to what was going on as they had never seen Aspergillus presented in this way. We were taken to 'the room' on the first day by Lauryns consultant and told that they might not be able to treat the infection. I remember Richard asking the question 'can she die from this' and the answer was not one I was prepared for. Yes there was a chance we could lose her to this infection. I can't remember ever being so terrified as I was for those first few days. I got to the point where every time i saw Myles (Lauryns consultant) walking towards me I would literally hyperventilate because every time we saw him, it was to call us back into the room for bad news.

Myles told me on more than one occasion that he was concerned that they did not know what was going on with Lauryn and that worried him and us! He was having to research around the country to see what might work. It felt like we were waiting....waiting for answers, results, treatments to work, improvement. I was constantly told that Lauryn should be more clinically ill than she was, by rights she shouldnt have been up sitting playing Nintendo DS, she should be flat out, even in Intensive Care. Everytime she laughed and played around, doctors were amazed that she had such a serious infection and wasn't showing any outward signs of being poorly. Each time someone asked Lauryn how she felt, the reply was a shrug of the shoulders and 'I feel fine!'. I have never felt so proud of my little girl, she showed such bravery, through all of the scans, tests, poking and prodding and watching us anxiously hovering by her bedside. People always say, try and be brave for your children and dont let her see you crying. This has to be the first time I have not been able to hide my anxiety infront of Lauryn, and for that I feel awful.

Relief came in small doses and not fast enough! Firstly, Lauryns CT scans showed that the A Aspergillus was in her lungs, and on a scale of 1-10 was at 4-5. The scan showed that her lungs were the only organs to have lesions on, her liver, kidney, sinuses, were clear, which was both reassuring yet worrying at the same time, as Docs had presumed that the only reason Lauryn had the fungus in her blood stream was because her organs were so riddled with it, it had leaked into her blood. We weren't home dry yet. We were then told that ontop of the Aspergillus, her blood cultures had shown that there was some viral infection present and that it could be a strain of MRSA, though not as bad. So Lauryn was put on some high strength 'back shelf' Anti-biotics as well as the high Strength Anti-fungals.

Next came a new worry that after an Echo-cardiogram of Lollys heart, they had seen some lesions on her Pulmonary valve. This meant that we might have to be transferred to Great Ormond Street for intensive treatment on the heart. Lauryn had a second ECG by a top consultant. I couldn't sit through it and had to go to the playroom. I am usually able to watch every scan, blood test, hold my babies body whilst she is being put to sleep and deal with the last minute struggles before she goes under, but this time I couldnt sit and watch, afraid to see anything abnormal in my little girls heart. We were again taken into 'the room', heart racing and hands shaking we were told that 'we have good news!'. RELIEF!! The consultant told us that firstly we have an amazing little girl, to say she is so ill yet so happy he said she is unbelievable! Secondly he said he could find no evidence of infection on her heart, no lesions, no aspergillus, she has a healthy normal heart! He told us he was not one to sugar coat the pill and always tells parents exactly how it is, so when he told us there was nothing to worry about in terms of her heart, I was inclined to believe him!!

This just left us with the lungs, foot and blood problems. The decision was made to remove Lauryns central line (wiggly) as her temperature was still not settling, even with paracetamol it was reaching 39.8. This was not a easy decision to make as it requires surgery that runs its own risks, lauryn would have to be cannulated in both hands and have peripheral blood tests every day and lastly as she had already had 2 lines previously on both sides of her body, we were running the risk that when we came to put another in, her veins might not take it. Nevertheless, research had suggested that fungus can indeed stick to plastic, so we had no option but to remove the line in case it was harbouring infection and making her more poorly. The line was removed and sent away to be tested.

Meanwhile, Lauryn could still not walk and was requiring us to carry her or push her in a wheelchair wherever she went. It is heartbreaking to see your daughter who was previously so full of life, running and jumping everywhere so confined and reliant on other people to get around. The physio continued with the lovely Lucy and PJ who Lolly fell in love with, meanwhile a second MRI scan on her foot showed that her ankle bone beared infection, there were lesions in the bone and although its not possible to find out what type of infection it is, it was assumed that the aspergillus had found its way into her foot bone and was causing the infection in her bloodstream.

Finally, 2 weeks later, Lauryns temperature started to settle. Instead of being high 39's it was high 38's, and after another few days she was spiking just a few times a day rather than every 2 hours. We all became obsessed with her temperature chart and would literally cheer when the nurse came to do her ob's and her temp was 37.9- a temperature that would normally disappoint us was all of a sudden good news!! Every spike after that would send my heart plummeting but soon it was just just high once a day around dinner time.

Her line showed no sign of infection so the only possible explanation would be that her ankle bone was infected. This left us with the possibility of Lauryn having surgery to go into the bone to wash out any infection as bone infections are also very difficult to treat. After much deliberating, it was decided that we would stick to the anti-fungals, and rescan in 2 weeks to see what was going on.

So we got out of Addenbrookes almost a month later, as soon as the doctors were convinced that her temperature was indeed settling. Her CRP (infection indicator from bloods) was previously over 100 (it needs to be below 10 to show no infection), was getting lower, then staying the same, then got lower, higher and is currently at 29. We are continuing the anti-fungals until the next scan which will show us what the Aspergillus is doing in the lungs and bone and Lauryn will continue with one of the anti-fungals throughout the rest of her treatment now to make sure it stays away. Her chemo, which was the other real worry in this, has been restarted, though only on 50% so that it doesnt wipe all her neutraphils away (as they are needed to fight this infection), but I am so relieved as she has missed 5 weeks of it. There is always that feeling that, if shes not on chemo, what is stopping the leukaemia from coming back...

Last week, we went to Addenbrookes for a check up with the consultant and whilst we were there, Lauryns temperature went up to 38.4....PANIC, was this a sign that the aspergillus is getting worse? she was taken in for 48 hours where she was given anti-biotics and it appeared to be a normal cold, and her temperature didnt spike again so we are now at home...for the time being...!!!

A sad week

I really don't feel like writing much on here at the moment, but am going to make special effort today! Unfortunately we had some bad news. When Lauryn first got diagnosed back in July last year, we spent 4 weeks in Addenbrookes whilst she had her first block of chemo. Whilst we were living in the hospital, we met Linza and Steve Corp, whose 5 month old son, Max had been diagnosed with Neuroblastoma a week before we arrived. I felt like we were all sharing the same emotions, and were going through the same initial stages together, and whilst our time in Addenbrookes was extremely difficult, we also shared times where we could laugh together in the parents room and make the best out of an awful situation and environment. I was so sad to leave them when Lauryn got discharged, and everytime we have been back since I have missed seeing them in the room next to us.

We managed to stay in contact, even after leaving Addys, and have kept up to date with our childrens progress. A few weeks ago, Max took a bad turn, and a scan revealed that he had relapsed. This news was devastating as there is no cure for a relapse in Neuroblastoma in the UK. Linza and Max were told that there were weeks left. However, Max fought and they were given news that there was a hospital in New York that offered a trial treatment, but at a huge price...$350,000. Fund raising began, but unfortunately Max lost his brave battle against Neuroblastoma and passed away this week. I am still at a loss for words as to what the Corp family must be going through, and can only hope that they find strength to cope together as a family, as they have always done. Max was a brave little boy, and endured suffering that noone should go through, let alone a baby. Rest in Peace, Max Corp. x

Panic Over!

Its thursday and we were woken up this morning early by the surgeon ready to take Lauryn to theatre to have her Wiggly removed. After signing the consent, which always panics me slightly, as they run through the complications that could occur, we got sorted and headed over once her platelets and anti-biotics had run through and started the process of being put to sleep. Lauryn was very apprehensive being put to sleep as she now knows that when theres no wiggly in place, she will need to have a cannula put in, which she absolutely hates. 

So she was put to sleep (by Sam the anaesthetist, who is absolutely lovely and always puts us both at ease, we love him) and I was sat waiting for her to come out when Myles came out to say that they have realised that the line is actually still very secure further up under lauryns skin and that they have tugged on it and it didnt budge. Also, the infection around the exit site seems to have cleared up.... so, the line will not be taken out.

I wish I had got a camera with me to film Lauryns reaction to this when she woke up from the sleep....the first thing she did was to ask where Dezzie was, and the second was to check both hands for cannulas....the confusion then immense relief on her face when I told her she wasn't having her line out and no cannulas was priceless!!!!! Better than christmas morning!!!

So, Lauryn is currently at hospital school and I am sat waiting for the doctors to do their rounds to see when we are likely to be discharged home. Lauryn has not had a temperature since tues at 6pm, so as per protocol she must remain on anti-biotics for 48 hours which takes us to 6pm tonight....but then we have the small issue of waiting for the cultures to return from Tues when they tested the infection site. They are due tomorrow morning, but as Pboro did some on Monday, I am hopeful that Adden will use those results rather than wait for their own to come back. 

I do hope we can go home, I really hate being here. Dont get me wrong, the ward is lovely, staff are brilliant and the facilities are exceptional, but I am constantly reminded of what we're in for. This ward is full of children who are oncology patients and its hard to forget. At Pboro, its different because its a generalised ward, and you can almost forget the reality of the situation, here, there are some extremely poorly children and it truly is heartbreaking.

x

Wiggly problems.....and HAPPY 1ST BIRTHDAY EVIE!!

Well this is a quick update before I go back to Lauryn in hospital. On Friday, Evie managed to have a good old tug on Lauryn Wiggly (Hickman line), and pulled out the stitches holding it in, meaning now that the line is working its way out. It has also started oozing meaning it is probably infected too.

We went in to Adden yest, which was also Evies 1st Birthday, just for routine Chemo (thinking we'd be back home later to celebrate!!)and while we were there, our consultant Myles had a look at the wiggly...and decided that it is best for it to be taken out before it falls out at home (which I think I would be too panicked to deal with).  So we were scheduled to have it removed on Friday BUT as usual, things never go to plan....upon adminstering chemo, Lauryn  went pale and her temperature soared to 37.7 from a normal 36.9, within 15 mins it had gone up to 38.1, so we were admitted and Myles now wants the wiggly taken out earlier than friday incase it is the source of Lauryns illness.  So she is currently in Addenbrookes on Anti-biotics and her surgery is booked for tomorrow morning.

Shall update more when i get time, but just want to say Happy Birthday to my baby girl who is now 1!!!!!!!! and also, that we are still thinking and praying for Baby Max and the Corp family and hoping that this trial can save him. xxxx

Been toooo long!!! update!!

Yes i know, rubbish, i set this up to keep you all updated, but havent....many reasons why really, but none that i can explain! Anyway.....feeling better now so im going to update as much as i can before Evie wakes up!! Firstly, some good news....Dez and I are getting married next June! Something to look forward to, we are all sooo excited, and Lauryn cannot wait to be flowergirl!!

However, amongst the excitement and me wanting June to come along quickly....it dawns on me that Lauryns chemo will be finished completely a few months later in 2010 and then the excitement drains away and fear sets in. I thought i was strange to feel this, especially as everyone else tells me that they are looking forward to the end of treatment...until i spoke to another mum at the hospital last week. Her son is coming to the end of his treatment and she feels the same as I do, complete dread that thats it....treatment over, the best medicine has been used and thats that. Now, what begins is uncertainty...will it come back....the fear of the bone marrows being done and the phone ringing. The fear really is overwhelming and I still have a year to go. It has felt, so far, like chemotherapy, although nasty, has at least been certain. It has been like a security blanket for us, that it is fighting the leukaemia and keeping it away. I feel scared of what will happen when that is taken away.

Anyway....we are now on the last stretch of intensive chemo....the Delayed Intensification Therapy lasts 8 weeks, give or take a few wks for any delays due to low blood counts. We then move onto Maintenance treatment.....HOORAH!! I am told that maintenance means we only have to have weekly blood tests, monthly chemo (at pboro) and bone marrow every 12 weeks at adden.....oh yes....the rest of the treatment will be delivered orally by me at home (which makes me slightly apprehensive incase i do something wrong) but still....wayhay, no weekly trips to Addenbrookes!!

Lauryn did relatively well in her Capizzi block of chemo, she only missed 2 doses of it due to low count, but her weight did drop considerably, so she is very skinny again. However, in the 2 weeks break she had between blocks, she has managed to go to school every day (!) and has put on a over a kg of weight, so was starting this block relatively well!!!

Knowing that the chemotherapy will be getting less intense in August is a major relief to me. I really cannot complain as Lauryn has pretty much sailed through treatment so far....compared to other children I meet in the Day Unit....without too many problems eg walking problems, feeding tubes, major side effects etc. Having said that, the same problems keep cropping up at the moment....one being her tummy aches which seem to be getting more intense. She is now on codeine pretty much every day to cope with the pain, but our consultant, Myles has said they will think about doing a scan on her tummy if the pain worsens or she gets other symptoms....which obviously worries me no end.

Tonight, Dez has gone out with his workmates, so this would normally mean that Lauryn and I have a girlie night and watch tv with sweets and other tasty treats while we have the tv to ourselves....but unfortunately she was in agony with her tummy, so i gave her some codeine and she wanted to go straight to bed.... These are the small things that really get to me because we were both looking forward to spending proper quality time together but she is just too poorly.

Anther recent problem is that Lauryn is on a course of steroids for 2 weeks, with 1 wk break inbetween. Obviously, this is not the first time Lauryn has had steroids, hence the chubbster we bought home from Addenbrookes back in August last year, but these short sharp doses seem to be having awful effects on my little girl. She has become subdued, grumpy and aggressive...not my Lauryn at all, and I think its scaring her a bit. Lauryn isnt able to cope with such emotions and anger and its taking its toll on her. Thankfully, the side effects should subside next week when we have a weeks break, but this week is proving difficult. We have had bone marrow and IT chemo (delivered into spine under general anaesth) on tuesday, vincristine on wed and PEG (nasty injection into thigh muscle) on Friday. This has rendered Lauryn very nauseous and achy in her legs.

Roll On Maintenence!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

What next.....!

We headed over to Addenbrookes yesterday for Lauryns chemo, however due to her platelet count being too low, she couldnt have her Methotrexate so only had her Vincristine (a quick batch of chemo put straight into her hickman line).  I dont know if i have ever explained Lauryns Hickman Line (Wiggly), so I probably should do. 

Basically it is a central line that is inserted into the main vein in the side of her neck, down into her heart. It is used to take bloods, and deliver chemotherapy and other medicines without having to constantly use needles. Lauryn is on her second line now after her forst kept getting infections.

At first, the prospect of the line going was horrifying to me. She had it inserted in August under general anaesthetic in the big theatres of Addenbrookes-they do small all the big surgeries up there and her small procedures in the day unit.  Its all very daunting up in the big surgeries, and I hate leaving Lauryn there especially as it is quite far to get to. I take her up with the nurses, and once she has been put to sleep, they give me a pager so that I can go off safe in the knowledge that they will beep me when she has come out of theatre. In reality, I actually spend most of the time she is in there pacing, worrying and loitering round the long main corridor until I get that beep.

When her first wiggly was put in, I hated it, it looked scary to have an incision mark on your 5 yr olds neck and a tube hanging out of her chest, and 7 months later, it still has the same effect, only now I am completely indebted to it. This line has proved an absolute godsend as it has eased treatment for Lauryn, and taken away the traumas of cannulas and endless peripheral blood testing which proved exrememly difficult after a while because Lauryns veins were so overused. I still go abit funny when Evie goes to pull on it, or if other kids get to close to it!!!

Lauryn has coped remarkably well with her wiggly and is fiercely protective of it when others go near it. The problems we have with it, are of course the risk of it getting infected, not being able to go swimming or getting it wet, and Lauryns allergy to the plasters that cover the hole where her line comes out.

So, anyway, we went to have chemo yesterday, and I showed the doctor a rash that has appeared on Lauryns back. Unfortunately they have said that it is shingles, so she now is on anti-biotics to try and get rid of it. Im trying to get Evie to catch it so that we can get chicken pox over and done with but shes just too healthy!!! Thank god!!