Round Two

May 25 - Day before round two starts. I didn't expect Lilyana's hair to fall out so fast, feeling like her hair has dramatically thinned out, finding it a little sad because she had such lovely thick hair. I have a roller thing with sticker tape on it, I'm always rolling over clothes and bedding to pick up all the lost hair. Hair everywhere. Praying that Lilyana's bloods will be good so chemotherapy can start tomorrow.

Lilyana managed to climb into this little trolley
in the child waiting area, pretty proud of herself.

May 26 - Left home at 6am to get to Starship. Blood test done at 8am and then up to level 7 to wait. 8:30am chemotherapy drugs were ordered (same drugs as last time). 9:30 meet with oncologist who was happy with the bloods and gave the all clear to begin. Haemoglobin 103, platelet 239 and neutrophils 1.23 (up from 0.46 on May 22) AND alpha fetoprotein down to 86.8.


We had a long wait because the chemotherapy drugs didn't arrive until 12pm, our nurse was not impressed, because she had ordered them so early. They brought up a cot so Lilyana could have her treatment while sleeping, this spot will be our home for these three days of treatment.

Lilyana's cot was for resting, sleeping, playing and eating :-). She loved walking up and down the corridors. Before treatment this was fine, but during became a little harder, I had to hold both Lilyana's hand and line and the pole on 'wheels'. I say 'wheels' because only 3/5 of them went round, meaning I was kind of dragging it over the floor. Not looking forward to the day she can walk, think I'll be running after her with her pole :-). Got through the traffic before it got bad. Home sweet home, but oh so tired physically and mentally.



May 27 - Day two, left home at 7am. Started treatment at 9:30. Today was the longest day out of the three (1st day -4 hours, 2nd day - 5 hours, 3rd day - 4.5 hours). Lilyana is so tired and cuddly. 

Lilyana had a number of rests today, and even though the room was completely full (all six beds plus parents). Lilyana even had a good afternoon sleep. She was gone. Slept through loud talking and the tv blasting. When she went for her walks she randomly holds out her hands to strangers to get them to hold her hand so she can walk faster. All the staff know her name and make an effort to play with her as we go past (e.g. peck a boo).

Spending so much time at Starship means you meet so many people who have interesting/sad/amazing stories to tell. Most kids seem to have some kind of leukaemia, which means their treatment will be for years. Have meet two kids with cancerous tumours in the brain, one the them is 5 years old and can not walk unaided, development has been very slow. Have meet a number of Christians who have been full of great advice in many areas. And sadly we have meet the parents who are very bitter about everything and it seems understandable after you find out the years of suffering their families have been through.

Feeling blessed that we have God's peace and comfort through all of this.

I think that God has placed us here for a reason.

May 28 - Day three, so many cuddles today. Short walks with many rests. Lilyana did very well today. Had a good afternoon sleep and cooperated with dressing changes and obs. Had a lovely visit from Tante Jody (even though it took her ages to find a carpark) a nice way to end round two. Oh and thanks to Sarah who helped with our car seat issue, after I left for starship with Derek's car seat, oops. 

May 29 - Life goes back to "normal" with a lot less hair. Please if you feel like you really need to give a soft toy to Lilyana, please refrain she already has lots and lots :-).

So pleased I don't have to drive into Auckland everyday. After three days of travelling in, I calculate 8 hours spent in the car, double what it would take in nice traffic. Pleased we can have some home time now.

Birthday

Happy First Birthday Lilyana :-)

May24 - Feels strange that our baby is one. One year has gone so fast and so much has happened for us all.  We had a quiet day. Grandma came from Christchurch to spend the day which was a real treat. Lilyana didn't really understand the present thing but Derek understood very well and was very willing to help unwrap and play with the new toys. Lilyana was very spoilt by family and friends.

Lion from Oma and Opa Posthuma

Duplo from Daddy and Mummy

If you know Lilyana's sounds you should be able to hear surprised voice.

Lovely Necklace from Uncle Louis and Aunty Joanna. 

She didn't want it on, but it proved to be very yummy.

Lovely jacket from Uncle Ben and Tante Jody

Beautiful dressing gown from our neighbour

Derek enjoyed the digger that appeared next door.

Grandma cuddles

Just Before Round Two starts.

NEGU t-shirt from the Jessie Rees Foundation

NEGU - Never Ever Give Up

May 23rd - Derek and Lilyana had haircut day today. Lilyana's hair has been falling out like crazy. Feels sad but we decided to cut it shorter to make less mess. She has been getting hair everywhere, and often pulling it out herself and then eating it, even though she hates having hair in her mouth. Her hair looks darker without her blonde ends.

Oma got the fun job of cutting the hair for both Lilyana and Derek, marshmallows were a sweet reward today.

AND 

we got the blood results from yesterday's bloods. Red bloods cell are climbing up to 100 now. 

Platelets (stop bleeding) are down to 62. Lilyana can now bruise very easily and already has a few on her arm and head.

Neutrophils are down to 0.46, not good if they are below 0.5, these help fight off infection. Please pray that she doesn't catch anything and that they rise so treatment can begin again on Monday.

Photo's below: Fun with hats, now she just has to learn how to not pull them off :-)

Big Birthday Tomorrow (24th May). 

Turning the big ONE

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' .

Early Cancer (First Treatment)

Lilyana and Daddy

April 16th - Today we went into Starship hospital to hear the results of the tumour, for Lilyana to have a CT scan, and talk to the 'cancer doctor'. Lilyana's tumour was cancerous and they are not confident from their tests that they got it all. CT scan showed that the lungs are clear from cancer, hopefully indicating it hasn't spread through her body. Continued blood tests have been showing a decrease in the alpha-fetoprotein (cancer indicator). We now ask for your further prayers as we make the decision to either wait and see what happens or to start chemotherapy now. With both having so many pro's and con's and so many risks it will be a difficult decision. 

Lilyana before Chemotherapy starts

May 1st - Yesterday (30 April) we went to Starship hospital to talk with the surgeon and oncologist. Blood tests were showing a decrease, however the rate at which it was decreasing was slowing. We had to wait till this morning for yesterday's blood results. The Oncologist rung this morning. Lilyana's alpha fetoprotein has started to rise (indicting growth of the tumour). Thankfully this has made our decision a lot easier. Lilyana will be starting chemotherapy next week. Monday will we meet with doctors to discuss the plan in detail. Wednesday she will have a Hickman line put in and will start treatment Wednesday

May 5th - Not really much to report. Lilyana got a Hickman line put in today. I'm learning doctors like to change their minds. Tomorrow Lilyana will have some tests done and should be starting treatment on Wednesday if all is good. Hopefully we will be able to go home Friday. The plan at this stage, is for 4 treatments over 12 weeks. We will be able to be home for the other three treatments, just come into starship during the day for treatment but be home for the night. I'm learning lots and I'm sure there is a lot more to learn, a lot more.

Wagon rides in 27B. Cut on her neck is the entrance for the Hickman line

May 6th - Well today has been go go go which is a nice change to waiting. This morning Lilyana had hearing tests, blood tests and her kidneys tested. Hopefully we are all good to start chemotherapy tomorrow. We also talked with a dietitian and allergy specialist. Lilyana got to enjoy a bath in a little baby bath, she ended her day with Opa and Oma cuddles. Praying she will sleep well tonight. Thank you all for your prayers.

Toys

May 7th - Today had a very slow start. Lilyana played for an hour in the playroom, loved it, so many fun toys and lots of things to practice walking around. She will be walking before I'm ready for it. This afternoon Lilyana had an x-ray of her chest. And started a four hour round of chemotherapy (etoposide) at 2:15. She did very well, being connected to a machine that isn't mobile, she sat on me for most of it, either sleeping, cuddling or just chilling watching some cartoons. She is heavy, I experienced a number of dead arms. 
Lilyana is doing better than I thought she would. Praying she has a good sleep tonight. Tomorrows treatment will be the same as today plus an extra hour of a new drug (carboplatin).

Pre-Cancer

January 22nd - Lilyana had an MRI. She has Sacrococcygeal Teratoma, basically a tumour that has developed at the tail bone. Should be benign. Haven't seen anyone about it yet, we have a pencil booking at Starship for just before Easter, but sadly nothing finalised. So some more waiting. Thankfully I'm at ease about it all and am thankful that Lilyana doesn't seem to be in pain or uncomfortable.

March 18th - Went to Starship hospital today for Lilyana. A lot of waiting which was to be expected, some information and bloods tests were done. Monday 24th Lilyana will go in again, they will put her under GA and have a good feel to confirm that it is a tumour on the tail bone and to gain needed information for surgery. Date for surgery is Monday March 31st.

March 24th - Lilyana and I will be admitted into Ward 24B at starship on Sunday afternoon all ready for Lilyana to have the tumour removed on Monday morning. Lord willing she will be all good to come home on Thursday 3rd April. Would appreciate your prayers during this time.

April 4th - We came home from hospital yesterday afternoon and had a very restful afternoon. Derek is struggling to be even more gentle with his sister than usual, hopefully he gets the hang of it. Lilyana is happy and active. At times she seems uncomfortable and sits on a strange angle. Sadly on top of it all her top two teeth are trying to come through.
For those that don't know they removed a tumour on Lilyana's tail bone, the surgeon wasn't happy with the tissue and suspects it may be cancerous. They also removed the last tail bone and some of the next bone. Being close to the spinal nerves it may have affected those that control bowel and bladder movements, only time will tell. We are now waiting for test results from the tumour and bone they removed to know what the next steps are, this will take some weeks. For now life goes back to 'normal' except for regular blood tests for Lilyana.

April 16th - Today we went into Starship hospital to hear the results of the tumour, for Lilyana to have a CT scan, and talk to the 'cancer doctor'. Lilyana's tumour was cancerous and they are not confident from their tests that they got it all. CT scan showed that the lungs are clear from cancer, hopefully indicating it hasn't spread through her body. Continued blood tests have been showing a decrease in the alpha-fetoprotein (cancer indicator). We now ask for your further prayers as we make the decision to either wait and see what happens or to start chemotherapy now. With both having so many pro's and con's and so many risks it will be a difficult decision.