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!!

Evies turn in ambulance!!!

Today was Evies turn to panic her mummy!! Well, Lauryn gets enough trips in ambulances and to hospital, we like to be fair and give both girls a turn.....!

Breakfast as normal, Evie eating Lauryns scraps of bread from a bacon sarnie...me in my dressing gown picking up the scraps that Evie leaves....I leaned down to pick one bit up when Evie decided to launch out of her highchair and fall on our kitchen floor head first. I would be lying if I said I couldnt remember the last time I was so scared as Ive had my fair share of big scares this year, but Evie really panicked me. She let out a massive scream then went really quiet and very pale, then vomited all over me. This frightened me enough to call 999 and get an ambulance. So we were taken to hospital to get checked out....docs were happy enough to let her come home, as long as we keep an eye out for any drowsiness, sickness or irritability in the next 72 hrs. 

Anyway, lesson learned.......ALWAYS.STRAP.EVIE.IN.

Capizzi Update!

Well, so far Capizzi going ok, we spent Tues, Wed and Thurs in hospital last week and this week we have abit of a break and only have to have bloods on thursday and then to Addenbrookes on friday.

We've been trying to make the most of the warm weather and sun, so have spent more time out as a family over the past week so have not really had the chance to update the blog....i am useless at this!! In all honesty though, nothing significant has happened recently anyway!!

We had a lovely bbq on Sunday and yesterday we had a chill out day and spent most of it in our pj's!! I tend to relish chill out days at the moment, as they can be quite few and far between! Some weeks we hardly spend any time at home and menial tasks like washing, hoovering etc can get neglected, so when I finally get a chance to catch up on housework, it takes up most of the day. Chill out days literally involve sitting on the sofa with the girls doing nothing but watching Spongebob (who both girls love) or catching up with my trash tv while the girls play....BLISS!!

Oh last night, we took the girls to meet Dez's nan. She lives in Scotland and doesnt visit often, so it was the first time the girls and I had met her, and she was lovely! True to form, Evie was quite miserable and wouldnt go anywhere near her Great Nanny but Lauryn was so excited and made up for Evies lack of enthusiam, she loves to meet new family!! 

Health wise, Lauryn is ok at the moment, though I have been panicked a few times. Lauryn started complaining that her back is sore, and upon examination appears to be coming from the sites where her chemo is administered and bone marrow is aspirated. I have left it and not mentioned anything to the doctors yet, because I want to see how it goes but if its still causing her pain I will tell the doctor on Friday.  She has also been having some tummy pains, which I did ring Addenbrookes about, and mentioned to our consultant today at Pboro. He examined Lauryns tummy and couldnt find anything untoward and isnt concerned, so I have to try not to panic about it.

I cant say that this whole situation has made me a paraniod wreck because to be honest, I always have been like this, having a child so poorly has only confirmed my old worries and fears and has made me a more paranoid wreck!!!!! I sometimes remember the things that would keep me awake at night before any of this happened and I realise how ridiculous it was to spend so much time worrying about things that could happen but didn't. This probably doesnt make sense,but basically its made me realise that life is too short to waste, if somethings going to happen, it will happen whether I worry about it or not, so I may aswell just enjoy myself instead of whittling.....easier said than done sometimes!! Lol!

I did take Lauryn into peterborough this afternoon though because I noticed a few new black bruises appear as well as some petichi (small blood spots) on her neck. These are the common signs that her platelets have or are dropping so I take her in for blood tests incase she needs a transfusion. The thresholds for a transfusion are 10 for platelets and 8.0 for her haemoglobin (hb), however if she is very symptomatic but they are slightly above the threshold, they will transfuse. 

Its an irritating part of the treatment because it happens so often, her blood counts drop and she needs transfusions. Platelets arent too bad because they take an hr max, but blood transfusions run for a minimum 4 hours....team that with having a blood test, waiting 1-3 hrs for the results, then waiting 2-3 hours for the bloods/platelets to be sent from another hospital, it can make a loooong day!! Today took 3 hours, but that was just for the blood test results...her platelets had dropped from 200 last monday to 40 today. So no transfusion, but a sure sign that the chemo is taking its toll on her bone marrow. Hopefully the count will come up in time for Fridays chemo or she wont be able to have it....we shall see on thursday.....!

More Park and Sun!!

Well, yesterday kicked off 5.30am, travelled down to Cambridge to start Lauryns Capizzi chemo block. As Lauryn is nil by mouth, none of us (except for Evie) eat until she comes out of anaesthetic. This, teamed with such an early start, makes everyone ever so slightly grumpy!!! The apprehension that we might also be turned away due to Lauryns cough was also on my mind, however, after a quick chat with the doctor and checkover, we were given the go ahead!

So Lauryn had her first dose of Methotrexate yesterday and we returned today for the second dose and vincristine. Tomorrow, she has her Peg Aspariginase. Lauryn dreads her Peg, it is a chemo injection put into her thigh muscle and it HURTS.  Over the course of the treatment Lauryn has had to endure many of these injections and each time is as difficult as the first. It is a traumatic experience that I always dread, tho not half as much as Lauryn does. I now have to talk in code and spell, P.E.G to the nursing staff when it is due so not to worry Lauryn, but she has cottoned in to this so I know have to rethink my plan. Most of the time, the nurses know that the word PEG must not be mentioned but sometimes we get someone new and just when I think i've got away with it they'll give the game away and Lauryn finds out! 

We finished quite early today at the hospital so, as it was hot and sunny out, we decided we'd go to Nandos to stuff our faces and then searched Sat Nav for a nearby park in Cambridge to spend the rest of the afternoon at. We found a spot along the river, so had a lovely day again with the girls, playing in the park, walking along the river and eating yet more ice cream! Hopefully we were successful in taking Lauryn mind off tomorrow.

We found out on Tuesday that we only have 16 weeks of intensive treatment left, which takes us up to August where we will then go onto Maintenance. On hearing this, we tried to contact our Clic Sargent Social Worker to arrange one of the charities holidays for August. The holidays can be taken at certain holiday parks dotted around the UK and one hotel in Scotland. They are free to families and I have been advised that if needed, we would have access to a local hospital in whichever area we are holidaying. 

This has given us something to look forward to, so I hope we can get a break booked!!