What is Maintenance?

Maintenance therapy is designed to help Toby stay in remission and prevent the Leukaemia from relapsing in the future.

It is usually less intense than the other phases.  For Toby this phase will last until January 2014 (providing there are not too many delays due to sickness etc) and he will be 5 years and 4 month old when he finishes treatment.

Maintenance involves taking oral chemo tablets on a daily basis, chemo via Toby’s Port (in Hastings Hospital), courses of oral steroids on a monthly basis and also Lumbar Punctures every 3 months (in Starship).

Although the Maintenance phase lasts for around 3 years, it is broken down into 12 week cycles (or 85 days).  This is what the drug schedule looks like over those 85 days:

Days 1, 29 and 57

Vincristine chemo via Port done in Hasting Hospital.

Days 1 - 5, 29 - 33 and 57 - 61

Dexamethasone (a steroid) given orally twice a day for 5 days.

Days 8, 15, 22, 29, 36, 43, 50, 57, 64, 71 and 78

Methotrexate chemo tablet given at night (2 hours after food).  This is given every Thursday except for on the Thursday that Toby has a Lumbar Puncture (once every 3 months).

Every 3 Months

Lumbar Puncture (for Methotrexate chemo to be injected into the spine).

Every Day

Mercaptopurine Chemo Tablet given at night (2 hours after food) every single day for the rest of treatment.

During Maintenance, Toby’s Neutrophils need to be kept at a certain level (not too low and not too high), so even though the above is what Toby is meant to be given, sometimes the medications have to be increased, decreased or even stopped for a while until the levels come right and the best dose for his body can be found.

It is nice not having to go to Hastings Hospital or Starship as often now, but I am finding that giving all these medications every day just makes me feel more like I am living from day to day.  Toby has only been on Maintenance for 3 weeks and it already feels like it’s been forever!!  It’s going to be a LONG 3 years.

Maintenance YIPEEEEEEE……………..

So off to Auckland we went starting with a finger prick blood test and a clinic appointment on the Wednesday.

On the Thursday it was up to Starship at 7:30am for all the usual pre-theatre checks - blood pressure, temperature, height and weight and paper work for me.  We headed off to theatre at 9:30am.  No dramas with the Port line this time thank God!!

Toby was given chemo via a Lumbar Puncture and was in theatre for around an hour (I escaped to my favourite place to eat - Café Crema in Park Road for some tasty French toast, bacon and banana!!).  Once Toby was awake he was given a dose of Vincristine chemo via his Port and we headed back down to Ronald McDonald House, packed up and headed for Auckland Airport for our flight home.

6 nights in Hastings Hospital + 9 days of daily IV Antibiotics…………

In my last post I mentioned that we were admitted to Hasting Hospital due to Toby having high temperatures and being Neutropenic (no immunity).  We had to stay there until Toby’s fevers were under control and until his Neutrophils went above 0.5.  We ended up staying 6 nights and during that time Toby was on IV Antibiotics 3 times a day and needed another blood transfusion.  After that we were allowed to go home, but had to return to the Hospital once a day for more IV Antibiotics (which meant we at the Hospital anywhere between 2 - 6 hours depending on how busy they were) and we did this for another 9 days until his levels suddenly shot up to 0.9.  I was fine doing this daily for a week, but after that I was SO OVER IT!!!!!

We were due at Starship on April 11^th / 12^th to begin Maintenance, but were told by our Paediatrician that it was highly unlikely that Toby’s bloods would reach the level required to begin (0.75) and that most kids begin Maintenance a few weeks late after being knocked for a six by the previous stage.  But, Toby the little trooper proved us all wrong and his levels went well above that required meaning he could finally start the last phase.  Way to go Tobz J