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.