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...!!!
