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