Round Three - Monday 16 June to Wednesday 18 June

Monday June 16 - Met with Oncologist for update. Lilyana's alpha-feta protein is coming down, which is great news. 

It needs to come down to below 10. 

Lilyana is at 11.1  :-)

Praise God. The cancer is almost gone.

Tuesday June 17 - Came to hospital Monday morning for the day and still haven't left. Lilyana has been getting some real high temperature's and a number of other issues. Looks like she may have a bug in her Hickman line. They may need to remove her line tomorrow. Not sure how day 3 of chemotherapy is going to happen.



Wednesday June 18 - This morning Lilyana was nil by mouth (no food or liquid) just in case they had to remove her line (with surgery). She was not happy about that. But thanks be to God Lilyana's latest blood culture didn't grow anything, so no surgery needed. She was real happy when she could have a breastfeed again :-). Her temperature has been good and she even ate a little breakfast, which is pleasing because she has refused food since Monday morning. Bloods not great, will be doing a blood transfusion this afternoon. Antibiotics has continued and so has chemotherapy. Praying she will continue to improve and that we can go home today/tomorrow.

What a long day. Lilyana had a high temperature again this afternoon. Chemotherapy is all finished for this round. Still in starship. Praying she has a good night. No idea what the plan is for tomorrow apart from antibiotics and fluids. My plan for tonight is sleep :-).

Feeling a lot better today :-)

Thursday June 19 - Lilyana will go have surgery this afternoon to remove her Hickman line. It is currently blocked so they have had to switch to oral antibiotics. Last dose of oral was 10 ml, think we got less than half of it into her, tastes yucky. So another night at our favourite hospital :-). Removal of Lilyana's infected line went well. She is so much happier and looks so much better. However she is not impressed about the 'thing' in her foot, for the antibiotics to go through, (can't think what it is called). Not sure when we can go home, doctors want her to have 48 hours of iv antibiotics, now that the infected line has been removed. About 6 hours down. We will see what tomorrow brings.

Walking the corridors 

Wheel chair rides to pass the time, tick tick tick.

Saturday June 21 - Well where to begin :-). I'm so tired. So Friday came, and the 11 am antibiotics doctor came and said we had to stay till Saturday morning to get as many rounds of antibiotics in as possible. They let us leave in the early morning to go the airport for Christchurch (to see my Daddy, Lilyana's Grandad). They let us out at lunchtime to go home and pack with instructions to be back before 5pm. Well, we returned back to starship only to find that Lilyana's iv thing in her foot was 'broken'.
tick tick tick.
Doctor tried to put one in another place.
FAIL.
tick tick tick.
More experienced doctor tired to put one in.
FAIL.
tick tick tick.
An even more experienced doctor tired to put one in.
FAIL.
tick tick
New plan
tick tick.
10pm decided an antibiotic would be injected into her muscles (in her legs) and then we could continue with oral antibiotics while in Christchurch. 10:40pm doctors and nurses arrived to administer the injection. 11pm we left hospital . 11:45 arrived at home . 

Both children had bad nights. 5:45am get up, 6:40am leave for airport. 

We had a great flight, children were great. Flight even arrived early

Now in Christchurch. Was great to see my Daddy. Lots of tears . Love you Dad. Been twice today to visit him at Christchurch Hospital. Soon he will be moved to Burwood hospital. Finding it hard to see my very active Dad only moving his left arm and his head a little.

Lilyana is doing great. But we are all tired.



Sunday June 22 - Big confusion between Starship and CHOC (Children's Haematology Oncology Centre) in Christchurch hospital. Spent sometime there trying to convince that Lilyana didn't need any medical attention. Told to return Monday for some bloods. Did manage to visit Dad at Christchurch hospital.

Cuddles with Great Uncle Winston

Waiting at CHOC

Monday June 23 - Lilyana's bloods were mainly good except for her neutrophils which were down to 0.1 :-(. Her eczema is bad because her immunity is down. But got the all clear from CHOC that we don't need to go back again while we are in Christchurch, great news because Dad got transferred to Burwood hospital, Spinal Unit this afternoon. Dad also had a meeting with on Oncologist today, didn't have great news.

If you are in Christchurch or going to Christchurch please visit him, helps the time go faster :-).

Dad (Grandad) in his wheel chair eating lunch

Dad and I

Dad and Nathan

Dad and Joanna

Tuesday, Wednesday - Visited Dad as often as we could, between Derek and Lilyana's sleeps


Thursday June 26 - No place like home.

Cancer buddy

About an hour after posting our last blog we found out some bad news.

The doctors finally figured out what is wrong with my Daddy, Lilyana's Grandad. They found a secondary tumour on the top vertebrae (his neck). He had lost most movement of his limbs. Since finding the above they have also found secondary tumours in other places.

They operated on Monday 9th to remove as much as they could of the tumour in his neck as to relieve the pressure on his spine and hopefully give him back some movement. Please pray for my Daddy.

We hope to find out some more information this coming week.

Grandad with Derek as a baby

Grandad with Derek

Grandad with his Kerkhoven grandchildren

Grandad with Lilyana

Meanwhile we can confirm that Lilyana does not react well to touching raw egg. On Friday night Derek had broken an egg on the floor and I found Lilyana playing in it. She came up in hives on her lower face and neck. Thankfully it all disappeared after an hour or so. But oh what a fright.

Lilyana starts round three on Monday. Please pray she continues to do well and be all good to go visit Christchurch on Saturday.

Walking :-)

Thank you all for your prayers, cards, meals, baking, child minding, vouchers for petrol and supermarket, fire wood, gifts and messages. We have been very blessed. It has been nice to not have to worry about our finances during all of this. God has been very good to us as a family and to Lilyana who has been doing amazing after round two. Our prayers have been answered in regards to Lilyana not experiencing most of the bad side effects. Although she doesn't always sleep well at night and can be very fussy when it comes to food (treatment can affect taste buds).

May 31st - The start of a great weekend. Jo and Roley came to stay for the long weekend with Heidi (Big thanks to John and Harriet for looking after the other 3 kids). Lilyana thought Aunty Jo was the bees knees, as did Derek. 

Very blessed with some fire wood too, had lots of fun stacking half of it. Actually Lilyana wasn't very impressed because she just wanted to be held :-(.

Lilyana had a bad night, she was so itchy from her eczema that she itched off the dressing over her Hickman line, we tried to redress, but failed. Went to A&M clinic here in Pukekohe to get it dressed properly as soon as they opened Sunday morning, by this time she had pulled on her line and scratched around it that it had bled some.

June 1st - My beautiful niece's 3rd birthday :-). A great day. Lilyana decided to walk today, not just a few steps but walk. Davy got a clip of it, see below.

June 2nd - My beautiful niece's 2nd birthday :-).
Got the rest of the fire wood stacked. And sadly all good things have to come to an end. Real sad to see Jo and Roley leave, and Derek was most upset to wake from his afternoon sleep to find them gone.

While Jo was here she made Lilyana a few things, she made a crochet Lily which became the pompom on one of the hats.

Back view of the lily hat

Front view of the lily hat

The lily pompom

June 3rd - My beautiful niece's 5th birthday :-).
Not much happening today. Lilyana has slept a lot and feels cold to the touch, going to have to put layers of clothes on her. Tante Jody and Uncle Ben made us a roast for dinner and came to help eat it too. Lilyana was happy to show off her walking skills but mainly enjoyed the fact that there were more people to hold her.


June 4th - This morning we had a visit from the Kidz First Nurse to change the dressing and to flush the Hickman line. And a visit from Lab Test to do Lilyana's weekly blood test. Lilyana does so well not to wriggle and scream, she just sits/lies and watches. Visit from Oma after work, once again Lilyana willingly showed off her new skill and to get lots of cuddles.

Lilyana already for breakfast

June 5th - Lilyana was cold this morning. Got the fire blasting and she warmed up. This week blood tests results are Haemoglobin 93, platelat 282 and neutrophils 1.1. Praying that these don't drop any more over the next week.

Davy and I got to go out for dinner tonight (without kids), was lovely.


Sorry this wasn't a real interesting blog, nothing really to report, things are going well :-)

Praise God