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