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

Our 6th night in Hospital.........

Tonight will be our 6^th night in Hastings Hospital.  Toby is doing well; he still has a bit of a cough, but is his usual cheeky self.  We are hoping to be allowed home tomorrow.

The next couple of weeks are put aside as a bit of a rest period for Toby’s body to recover before beginning the last phase of treatment called Maintenance which lasts for the rest of treatment (around 3 years).  It is always a bit of a milestone to reach Maintenance, so here’s hoping we can start it ASAP.

Hi Kathryn hehe J J

What’s been happening since the end of March……….

Sorry about the huge gap between posts, I’ve been a bit slack!!

Well just as Toby’s hair was starting to grow back nicely (and still blonde) the new drug that he started taking was making his hair fall out in clumps, so off it came and he was a little baldy again (even balder this time around as it completely fell out till his head was shiny!!!).  He was also on steroids at the time so with his bald head and puffed up face he looked like a little Cabbage Patch Doll ;)  His time on steroids was tough going – it makes him so hungry that he constantly demanded food, which was time consuming and frustrating when he would constantly change his mind about what he felt like.

On Tuesday 12^th April Toby had bloods done at Hastings Hospital which showed that he was all good to head to Auckland to start Day 29 of the Standard Delayed Intensification phase. 

On the Wednesday Toby had a finger prick blood test and a clinic visit.

On the Thursday we headed up to Starship at 7am to wait for Toby’s turn in Theatre.  It was hideous not being able to give a starving kid on steroids any food after 2am that morning!!!  We headed down to Theatre at around 9am where the team were waiting for us.……disaster struck when I picked Toby up off a chair and got his IV line caught under it which ripped the Port needle half way out of his chest!!!!  I felt so terrible, all the Theatre staff were waiting for us and the Nurse had to run around to get new syringes, saline, gloves etc and test the Port it to see if it was still working (which it wasn’t) so that meant having to get a new needle, hold him down while he absolutely screamed his head off and stick it in which Toby’s hates so much.  It was so traumatic for me, as I know how much he hates the Port being accessed and I had caused him to have to have it done twice, plus held up Theatre!!  I had to do everything in my power not to burst into tears, especially when the lovely Theatre nurse put her arms around me and asked me if I was ok!!  It was a nightmare and extra hard to deal with being in Auckland all on my own L

After all that Toby finally went off for his Lumbar Puncture and Ara-C jab (chemo).  When he came too he was given another new chemo called Cyclophosfamide.  He then needed to stay for 4 hours of IV fluids to help flush it through his body.  There was another boy who was having the same thing done as Toby and we had lots of laughs with him and his Mum and Nana throughout the day.  We stayed again that night as it was too late to get home by the time we had finished.  In the morning before heading home we popped back up to Starship where Toby was given another Ara-C job in the leg (this was 1 of 8 that he was to have).

Over the next 2 days we headed to Hastings Hospital (once a day) where Toby had more Ara-C jabs.

He had a break from the Ara-C jabs for 3 days, then they started up again for 4 days in a row.  The jabs went as scheduled on the Thursday and Friday, but on the Saturday because Toby had been having high temperatures the day before and had developed a nasty cough, bloods were taken which showed Toby was Neutropenic (no immunity) and that he also had low Haemoglobin and Platelet levels, so we were admitted to Hospital and on Easter Sunday he was given both Blood and Platelet transfusions which gave him heaps more energy.  He was also put onto some IV Antibiotics and was given a chest x-ray which showed the possibility of pneumonia, which the antibiotics would hopefully sort out.

For the last two weeks Toby has also been taking oral chemo tablets called Thioguanine, these were much like the Mercaptopurine tablets that he took a while ago - they had to be taken at night and on an empty stomach (either 2 hours after food or 1 hour before food).  As with the Mercaptopurines it worked out with Toby and his eating patterns that I had to put him to bed and set my alarm for around midnight to get up, dissolve the tablets and try to syringe them into Toby's mouth without waking him up!!  It went better than with the Mercaptopurine tablets as he mostly stayed asleep this time, but it has still been a testing time for me having to get up at midnight to do it!!! 

For some reason we always end up in Hospital over Public Holidays so it was no great surprise to learn we would be admitted on the Saturday of Easter.  I was gutted at missing the boys discover their Easter eggs and do an Egg Hunt together L

What’s next?

Toby will start another 1 week course of steroids on the 31^st March.  On that date we also have to go back to Hastings Hospital for more Chemo (the same stuff he had on Day 8).

We are not due back in Starship until Wednesday 13^th April (and that is only if his bloods taken the day before are good enough for him to go).  This will be Day 29 and when we start on MORE drugs that Toby has never had.

I have heard from different people that the SDI phase can be a nasty one where the kids get really sick and all their levels go haywire which means treatment has to be delayed for a few weeks, so I am dreading the next 8 weeks thinking that Toby might pick up every bug imaginable and have his treatment delayed.  I hope not, but time will tell.

Day 8 Standard Delayed Intensification……

Thursday 24^th March was Day 8 of SDI and was also able to be done in Hastings Hospital.

At 8:30am we had to put some numbing cream on Toby’s Port site - what a MISSION!!!!  I had to get Bevan to stay home from work for a bit so that he could help me hold Toby down and all it was, was a bit of cold cream going on his skin!!!!!!  He is terrified of his Port being accessed and now even hates it when I take his top off to change him into something else, poor thing.

Once that was done it was over to Hastings where his Port was accessed (more heart wrenching screaming and holding down) and then Toby was given his Chemo (Vincristine and Doxorubicin).  It all went well and we had a lovely morning watching Toy Story 3 and Thomas the Tank Engine DVD’s, painting, playing with playdough, reading books and playing with the Thomas trains.