After Round One

May 12 - Thank you for your prayers and thoughts. Lilyana came home on Friday evening and life is slowly getting back to 'normal'. A lot more cleaning and plenty of hand sanitising throughout each day. Lilyana is often tired and when she is awake she is clingy, just wants to be held, in saying that she is still happy. She had gone off her food and drink but has improved today.

Some of you asked about the chemotherapy drugs, she had etoposide all 3 days, carboplatin on day 2 and bleomycin on day 3. Lilyana will have 4 cycles of chemotherapy (drugs probably will be different next time, maybe), each cycle is 21 days, the first 3 days is treatment. So a total of 12 weeks, if her blood counts are good and don't cause delay, by having to wait and/or have blood transfusions.
Cycle 2 begins 26 May, 2 days after her first birthday .

Many of you have asked how you can help us, here are a few ideas

1. Prayer, this is the biggest thing, we pray daily for healing, we believe whole heartedly that God can heal her and we have faith that he will. 
2. Food - meals for our freezer would be appreciated. Please remember (sorry) that meals must NOT have egg, dairy, nuts, and coconut in them. 
3. Food - fresh meals, particularly for the days of treatment when we will spend most of our day at Starship. Please remember (sorry) that meals must NOT have egg, dairy, nuts, and coconut in them. 
4. Baking for Davy and Derek (no food issues here ), fresh or for freezer. 
5. Want to have Derek for a morning (he would love to come play), please make sure you are all well and haven't been in contact with measles, chicken pox, shingles, diarrhoea, vomiting. 
6. Going to pak 'n' save? flick me a text or call before you go, I may need a little something. 
7. Love cleaning, come over and help me clean my house. Please make sure you are well and haven't been in contact with measles, chicken pox, shingles, diarrhoea, vomiting. 
8. Love Gardening? 
9. Baby-sit Lilyana and Derek so we can go to church together or go out for dinner, or just have time together. 
10. Pray 

Lastly, thank you for your kind words, cards, gift vouchers, money, gift for the kids, food, child caring services, phone calls and prayers, you know who you are (even if in some cases we don't know who you are ).




May 14 - Well today started well , then I learnt a few things.

We ended up going to Starship today, Lilyana had a temperature and the Kidz First Home Care nurse couldn't flush Lilyana's Hickman line or redress it because particular paperwork hadn't been done (frustrating). We left home and Lilyana's temp was at 38, she was not herself. On arrival she was up to 38.5. Bloods showed that Lilyana's counts were good . Meaning no blood transfusions and no antibiotics. She is still warm, so just a waiting game to see if she comes right. We are home now.

I have learnt to always have bags packed. It doesn't take long for things to change for the worse. I have a favour to ask of you who live close to us. Can you please let me know if you can take Derek at very short notice, day or night?



May 17 - Lilyana update: A week of high temperatures, tonight she got up to 39.2, so off to starship children's emergency. Red blood cell count was low and an infection (likely to be a bladder infection, or something round there). So antibiotics and blood transfusion. She is very restless and hot. This may be a long night. Not a great ending to a great day.
The youth group came round today and tidied up our garden and made two pallet compost bins. Derek loved every minute. Even though I was inside with Lilyana for most of it, it was most enjoyable. Please continue to pray for her healing and for strength.
Big thanks to all the youth.

May 18 - Lilyana update: They let us come home this morning, but have to return to hospital tomorrow morning for another course of antibiotics. Although she started the day with a 39.6 temperature she has done well and has been happy for most of the day. She had a big afternoon sleep, which was the best because I could sleep too. Last night very little sleep was done and a new game was discovered, how to drop something on the floor and then give a shocked face of 'where has it gone?', sadly it was a hit and Mummy grew tired of it long before Lilyana did .

Thank you to all you peoples who give blood, so people who are in Lilyana's situation can get blood transfusions.

Lilyana's red bloods cells (carry oxygen around body) were in the 90's on Wednesday, last night they were down to 72 (below 80 isn't good), after the blood transfusion they were back up to 92, long may it last.
White blood cell (fight infection) were 6.25 on Wednesday and are down to 2.5 now, below 0.5 is not good. Pray she doesn't get lower.

The past 30 hours have been an emotional roller coaster, really feeling that this journey is not going to be 'fun' .