Last Round EVER (Lord willing)

Sorry this took so long in coming, And that this update is brief.

Lilyana in Derek's Bob chair holding mummies dolly

Teeth cleaning time

Enjoying Opa

Stories with great uncle Hillary

Monday July 7 - Today Lilyana had bloods tested, which came back all good, meaning all good for chemotherapy to go ahead. Because she has no line anymore, we have to go in tomorrow to have one put in. Lord willing we will be able to start chemotherapy tomorrow and finish on Thursday, really praying for this. If plan A doesn't work she will start Wednesday and finish Friday, however we have tickets to fly to Christchurch Friday morning. Really looking forward to spending a weekend down south with my brothers and sister and their families and most of all my parents. Please pray for our week, with so much travelling back and forth between home and starship and Lilyana's surgery tomorrow. 


Tuesday July 8 - Arrived at hospital at 7am all ready for the possibility of surgery at 8am. Sadly Lilyana ended up being further down the list and didn't get in till 2pm. But surgery went well and recovery was fast. Chemotherapy started at 3pm. Four hours later, home time. Home 8:15pm. Long day. Thanks for your prayers.

Last round of chemotherapy. Through a picc line this time. Like her pig hat?

Wednesday July 9 - Only one more day of chemotherapy for like forever, Lord willing. Today went well. Lilyana slept a lot and had lots of cuddles with all the nurses. The clinic was very quiet, so nurses had time to talk and play with the kids. Our little three year old friend, Moosh, came and played again today. I played hide and seek with her while Lilyana slept and her mum was busy with her little brother. A lot of fun. The hat ladies visited too, needless to say we have an amazing range of hats that should last a few years.

Nearly our whole hat selection for both Derek and Lilyana.

Lilyana eating Derek siblings courage beads, while wearing half a ball on her head  :-)

Derek practising his photography skills

Thursday July 10 - FINISHED. Lilyana did very well today considering she wasn't feeling very well. She even manage to do a big poo (she had been blocked up). When she went to sleep this afternoon I left to go get some food, with instructions to the nurses that if she woke up to call me, they responded with no, because they wanted more cuddles with Lilyana! We played hide and seek again with our friend Moosh, but we were too easy to find. Not enough places an adult, a baby and a pole can hide. Moosh cried when she found out we wouldn't be there tomorrow, such a sweetie.
Well our bags are all packed, we are ready to fly to Christchurch early tomorrow morning.


Tuesday July 22 - We had a great time in Christchurch with a few highlights. The whole family showed up at the hospital for pizza night on the Friday (our wedding anniversary) and it was great to meet other families there. The whole family went to Willowbank on Saturday, Dad (granddad) came in his electric wheel chair and taxi. After looking at most of the animals we had a lunch in the cafe. A lot of fun, Derek loved the roosters and the donkey ride, Lilyana loved eating Ephraim's chips for lunch. And on Sunday we had family photos in the garden outside Dad's room, big thanks to Uncle Allan.

We went as a family to church on Sunday, amazing feeling. Have really really missed worshipping together.

We have an appointment with the oncologist for Lilyana on Monday July 28th, to see where she is at. We will also hopefully find out the long term care plan and get the picc line removed.

We thank God daily how well Lilyana has been through chemotherapy. After spending so much time at Starship, we have seen many kids who get bad side affects and even kids who react very very badly to the chemotherapy drugs with allergic reactions. We have been blessed.

We now pray that the cancer doesn't return and that the operation of the removal of the tumour has done no lasting damage to her control of number ones and twos (something we won't know for a while)

Lilyana's beads of courage, each colour represents something different. White is the days of chemotherapy.

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

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