KELLIE’S STEM CELL TRANSPLANT DIARY

10/5/04 TO 17/5/04

17^th May 04 Monday D-1

(Dad stays over)

Kellie has finished all chemo. She only has anti rejection drugs running through her Hickman line now. This is classed as the rest day. Nasal gastric tube inserted into Kellies nose today in preparation for nutrients and calories to be infused when she can’t eat due to mouth ulcers. About 4pm o’clock Kellie started to get lots of stomach cramps. Lots of vomiting she had a small amount of soup and threw up large quantities as well as her tube. Doctors have requested x-ray to find out if anything is obstructing the large intestine and bowel. Kellie is not very well. Morphine is being infused at a rate of 4 mls per hour to help with the pain. Approx. 9 o’clock Kell has improved out of sight - now playing on laptop. Comfort meter - J Doctors have told us that the large intestine had probably gone into spasm and caused the contents to come up. The morphine helped relax the spasm and everything went back to normal. Today we started wearing gowns and washing before we entered the room. Kellie is neutropenic (no white cells or neutrophils to fight infection).

	Haemoglobin	Platelets	Total White Cells	Neutrophils
Normal Range	120 – 160	150 – 400	4.5 – 13.5	1.8 – 8.0
17 May	115	97	1.3	1.29

16^th May 04 Sunday D-2

(Mum stays over)

Kellie spent her first night on her own. I stayed at Ronald McDonald House. Left Kellie at 11pm. I woke up at 4.20am thinking something was wrong. Nurse said Kell had lots of vomiting and diarrhoea at approx 4.20. This is mental telepathy at its freakiest. Still having chemo to kill off the rest of her bone marrow. It needs to be completely gone so the new stem cells are not attacked by her old cells. Kellie is loosing lots of fluid through diarrhoea. Her fluid intake needs to be adjusted so she doesn’t dehydrate. Kellie is not eating because of the soreness in her throat.

	Haemoglobin	Platelets	Total White Cells	Neutrophils
Normal Range	120 – 160	150 – 400	4.5 – 13.5	1.8 – 8.0
16 May	115	97	1.3	1.25

15^th May 04 Saturday D-3

(Dad stays over)

Woke up with sore mouth and thickened saliva – Not happy – remembering all the bad effects of chemo from last time. Had to have catheter inserted today because one of the drugs causes bleeding of the bladder and we need to avoid clotting in the bladder. One of the main side effects of the conditioning regime is the damage to the cells lining the gastrointestinal tract which may cause ulcers anywhere from the mouth to the bottom. To ensure the risk of infection is minimised mouth care is started today. (Anti-fungal medicine and anti-bacterial mouth wash) Feeling a little nauseas – not interested in food.

Today the diarrhoea and vomiting is becoming quite regular. Comfort meter LL

	Haemoglobin	Platelets	Total White Cells	Neutrophils
Normal Range	120 – 160	150 – 400	4.5 – 13.5	1.8 – 8.0
15 May	112	147	10.5

14^th May 04 Friday D-4

(Dad stays over)

Started all transplant preparation drugs, lots of chemotherapy. The administration of high doses of chemotherapy are to destroy lymphocytes (cells that recognise the new stem cells as foreign) so that they don’t attack and reject the new cells and to kill any surviving leukaemia cells which could otherwise cause a relapse. Started six hourly showers to wash away drug that seeps through skin and causes burning. 8am in the morning then 2 in the afternoon, 8 at night and 2 early morning.

Graham came to relieve me today and spent the night with Kellie. During the day they both dosed on and off, not hard to do in a warm, quite and comfy room. Kellie woke during the night – lost all of last night’s dinner. Diarrhoea is becoming a problem. Comfort meter KL

13^th May 04 ThursdayD-5

(Mum stays over)

Last day of radiation. Still no ill effects. Doctors are happy that she has not been nauseas or sick. Starting to get a little lethargic. After tonight’s treatment we will be transferred to Royal Children’s Hospital (RCH) to start chemotherapy. Finished last treatment at 6.45 arrived RCH 7.20. Duty Registrar Doctor unsure what to do with Kellie. I told them she had just finished 6 rounds of radiation and had been having heprin and antibiotic infusions, surely she should be put on something. Nine pm they finally decide to give her fluid infusions. 9.30 night duty registrar realises Kellie should be following Bone Marrow Transplant protocol. (Only after much jumping up and down by me and requesting the doctor call Kellie’s specialists). Kellie’s comfort meter – very tired. Mum anxiety meter – overworked

	Haemoglobin	Platelets	Total White Cells	Neutrophils
Normal Range	120 – 160	150 – 400	4.5 – 13.5	1.8 – 8.0
13 May	117	401	4.7	4.44

12^th May 04 Wednesday D-6

(Mum stays over)

Woke up with the wards man ready to take us to treatment – He had to wait for us and the pre-medication that the nurse forgot to administer. Pre-med is to help stop vomiting and nausea. Had treatment with no hassle. Robbie Williams is the selected performer for this morning’s treatment. TV people have promised the TV will work today. We wait with anticipation. Graham to bring laptop so we can watch a DVD. No TV so we watched Lost in Translation nice movie to while away the hours.

4.00 they collected Kel for the next treatment. When we got there the machine had broken down and were told this would cause a delay of about an hour. Finally got treatment at 6 o’clock. TV people called to say TV would be connected tonight. Finally at 7.20 we got the TV so Kellie could watch Home and Away and Big Brother J

11^th May 04 TuesdayD-7

(Mum stays over)

Kellie started her first of six treatments of radiation at 8 o’clock this morning. Three six minute zaps on one side of the body followed by three six-minute zaps on the other side. The radiation is to start killing off her bone marrow in preparation for the new stem cells. She enjoyed listening to Queen – Bohemian Rhapsody while the technician controlled the zaps. Little bit nauseas but could be due to no food until after 10 o’clock.

She is totally bored today with nothing to do. No TV, no videos, no D.V.D.’s or computer. Comfort meter – a little depressed - not happy L

4.30pm – ready for next lot of zaps. This time two six-minute zaps to the front of body followed by two six-minute zaps to back. Listening to Avril Lavine. Radiographer very impressed with Kellie’s eclectic taste in music. No ill effects from TBI yet.

10^th May 2004 MondayD-8

Weight 67.4 kg

(Mum stays over)

Today Kellie was admitted to Peter McCallum Hospital for Total Body Irradiation (TBI) in preparation for her cord blood stem cell transplant. In the weeks leading up to this day, Kellie was measured up and scanned for the correct dose of radiation for her bone density. She has been connected up to heprin, fluids and broad-spectrum antibiotics.

We have a room to our selves plus private shower toilet facilities, but no television. (Which makes it quite boring for Kellie). Nice views of the St. Patrick’s Church towers out the window. I get to sleep on a fold out camp stretcher beside Kellie’s bed.