A day in the life of leukemia

Typically on a day like Tuesday, Bianca would stop eating and drinking from midnight the night before to prepare for theatre. We went in early in the morning - We had to be on the ward by 08:00.

Here Bianca is arriving at CHOC - the Paediatric Oncology unit in Christchurch.

Usually she would be seen by a doctor or a registrar and they would typically listen to her heart, have a good look for any spots or rashes or any other problems that might be visible on her skin. They also feel around her neck and on her tummy. This particular photo was taken in Wellington.

A nurse would access her port by putting in a line into the port. The port is sitting under the skin. Bianca likes helping to clean the skin, but the nurse usually does it too. Bianca doesn't always enjoy the experience of getting her wiggle put in and sometimes it makes her cry. Not so much that it is sore (we put Emla cream on and this numbs the skin), and she soon smiles again after this. In Wellington we have Kate (the play specialist) and she is absolutely brilliant at providing distraction and so the experience is more fun than traumatic. We really missed her when we went to Christchurch. Kate is definitely one of the favourites at Wellington Hospital.

The nurse would usually draw some blood at the same time.

Throughout the day, they would take Bianca's saturation levels, check her pulse, take her temperature and take her blood pressure. On Tuesday they also had to check her urine for traces of blood as this is a possible side-effect of the Cyclophosphamide.

On Tuesday they started off by injecting some Cytarabine (chemo) into her line. Previously this would go into her leg just under the skin through a little plastic gadget that we call a butterfly. She really hated this, but it was just fine through her port, so I am very glad they changed it to this process. The nurses have to wear protective clothing when administering chemo.

They then started hydration in preparation of the Cyclophosphomide that is then given after 2 hours of hydration.

Bianca was also given Ondensatron through her line in case she would feel a little sick.

Then it was time for theatre. We waited in a room and we usually complete some forms to give consent and is then seen by an anaesthetist.

After theatre, Bianca was taken to a room to recover.

On Tuesday the procedure was a lumbar puncture into her back and they injected some Methotrexate (chemo) into her spine. The redness on her skin is the stuff they used to clean the area before starting the treatment.

Bianca was all happy and smiley when she woke up.

When we came back from theatre, they started Bianca's Cyclophosphamide (chemo) administered through her IV line as soon as the 2 hours of hydration was completed. This took 30 minutes to run.

I also gave Bianca her morning medicines (Co-trimoxazole and Omeprazole). This is usually given at the same time as breakfast, but on a theatre day Bianca is not allowed anything to eat or drink until after theatre. If it is not a Tuesday, Wednesday or Thursday then just Omeprazole and sometimes a steroid called Dexamethasone.

After the 30 minutes, they then give 4 hours of hydration.

Then in the evening at the same time of supper Bianca got Co-trimoxazole and Fluconozle. If it is not a Tuesday, Wednesday or Thursday then just Fluconozole and sometimes there is also a steroid called Dexamethasone which we don't have at the moment.

Then 2 hours after supper it was time for chemo number 4 (Thioguanine). We have to minimise handling the drug and we wear gloves when we give Bianca chemo at home. This one is a small tablet and Bianca chews it and then drinks water. We are not allowed to crush it, but if we want can dissolve it in a syringe with some water, and this process would take approximately 5 minutes.

So this was pretty much our day on Tuesday which was our Day 29 (Delayed Intensification).

It is not always like that and there are different medicines at different times - sometimes there are lots on a particular day and sometimes there are less.

The medicines we give at home are usually given in the morning with breakfast, then at supper time and then chemo drugs like Thioguanine and Mercaptopurine are given 2 hours after supper and cannot be given with citrus or dairy. Then usually there needs to be an hour after the chemo before she can eat or drink anything again.

There is another chemo drug we sometimes give at home called Methotrexate which she takes by mouth once a week and this is not given at the same time as the lumbar puncture procedure where Methotrexate is given in the spine. All other chemo treatments are usually given at the hospital. We don't have the oral Methotrexate in this phase.

For this phase I created a form that we keep in the kitchen so that we are able to tick off when we give medicines. Thank you Chris at Ward 18, I borrowed your idea.

Every phase has different combinations of different drugs and medicines and there are a few regulars that we have to give on an ongoing basis for now - Co-trimoxozole (Tuesdays, Wednesdays and Thursdays), Fluconozole (every night), Omeprazole (every morning). Some phases have more drugs that require hospital visits and then there are other phases where there are more oral medicines that we can give at home. Either way, Bianca needs to visit the hospital on a regular basis to check her blood levels and so on.

The phases in Bianca's treatment plan are:

• Induction (aimed at getting children in remission by the end of the 5 weeks).
• Intensified Consolodation (56 days)
• Standard Interim Maintenance (56 days)
• Standard Delayed Intensification (42 days of giving chemo with allowance for blood counts to recover).
• Standard Maintenance (84 days repeated until the date on which the Standard Interim Maintenance was started and will run for 2 years, so as an estimate we will be in this phase until approximately 11 September 2009).

We are expecting to start with the Standard Maintenance phase somewhere in January 2008 as soon as her counts are at the required level. In this phase Bianca will get daily and weekly chemo at home (along with the other ongoing medicines), there will be a chemo once a month in hospital through her port as well as Dexamethasone 5 days each month and then once every 12 weeks she will go into theatre for Methotrexate into her spine.

Starting dates and total time on each phase depends on blood count and sometimes there are delays if it takes the body longer to recover after some of the treatment or if there are infections.

Not all kids have the same treatment plan and we are on the IS Study Arm on a clinical trial (AALL0331). There are lots of factors taken into consideration when they choose a treatment plan, things such as age, type of leukemia, response to the treatment, the initial diagnosis and so on.