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.

Day 5 Standard Delayed Intensification……

Monday 21^st March was Day 5 of SDI and was able to be done in Hasting Hospital.   The day started with a finger prick blood test for Toby and when the results came back to show his bloods were ok, it was time for the dreaded Peg-Asparaginase injection (or Peg for short).  This is a nasty injection given straight into the thigh muscle and from Toby’s reaction to the last one he had right back when he was first diagnosed - it hurts like hell :(

He didn’t like it very much at all, but he got over it with the help of a cuddle from Mummy and some distraction from the Nurses and Racheal the Play Therapist.

Day 1 of the Standard Delayed Intensification Phase……..

We were due at Starship on Monday 14^th March to begin the SDI Phase which lasts for 8 weeks, but due to the Theatre schedule being too busy we were put off for a couple of days.

In the meantime Toby got his cast off after 4 weeks and 4 days (which was a hideously long time!!!).  He was very brave and didn’t even cry when the big noisy saw cut off his cast - the ladies in the fracture clinic said they have NEVER seen a kid of his age so calm during a cast removal :)  He has had the cast off for over a week now, but still isn’t walking which they said is normal.  He can crawl pretty fast though and it is so much easier for me to carry him around!!!

On Wednesday 16^th we headed up to Starship for a Clinic visit.  This time Bevan and Sam came with Toby and I so that Sam could finally see what happens when Toby goes for treatment etc.  On Thursday Toby went to Theatre for another Lumbar Puncture and afterwards had two lots of Chemo.  One was a drug he had never had before (Doxorubicin) but he tolerated it well.  He also started on a 1 week course of steroids.

We stayed on until Saturday afternoon and had a great little family holiday.  We visited the Auckland Zoo, MOTAT, Kelly Tarltons, the top of the Sky Tower and met up with friends at the Auckland Museum.  It was an awesome trip and it was so good to spend some quality family time together (well after all the yucky bits were over and done with at the Hospital!!!!).

Standard Interim Maintenance Phase DONE!!

Toby's bloods were taken on Sunday 27 February and the results showed we could head to Auckland the next day for Day 41 of the SIM phase (the SIM phase has 56 days).  There was a bit of drama trying to get to Auckland as (I think) due to the Christchurch earthquakes there were no flights left on the Monday morning to get us to our appointment by 10am, so we managed to book a flight to Auckland on the Sunday night and booked a night at Ronald McDonald House.  The DHB paid for a support person again this time to come with me because of Toby being in the cast, so Bevan came with us :)

Our consultant decided again that it wasn't possible to give Toby the Chemo via Lumbar Puncture because of the cast, but he still had the IV Chemo and that all went well.  Toby will have an extra Lumbar Puncture at a later stage to catch up on the one he has missed.

We are due back in Auckland on Monday 14th March when we begin the next phase called Standard Delayed Intensification.  This phase lasts for 8 weeks (56 days) and brings with it some new drugs that Toby hasn't had before.  These are the drugs he will have during this phase:

Dexamethasone (taken orally)
Thioguanine (taken orally)
Vincristine (IV)
Doxorubicin (IV)
Cytarabine (IV)
Cyclophosphamide (IV)
Peg-Asparaginase (injected into the leg muscle)
Methotrexate (injected into the spine)

On a lighter note - we don't get to see many famous people down here in little old HB so it's a big deal when I see someone off the TV!!  This time I saw Mark Ellis :) :)  Other people I have seen over the last few months are Rhys Darby, Dave Dobbyn and Annabelle White the cook from the Good Morning Show!!  I get so excited lol.

Unbelievable!!!

Arrrrggghhh well I totally jinxed myself by writing the last post about hoping to stay out of hospital for a whole 12 days!!!

Toby had been doing so well and was full of energy, which was awesome to see.  Sam and his friend were playing on the trampoline on Wednesday night (9^th February) and Toby decided to hop on with them.  I was just about to get them off but decided to stop and check the tea in the oven first when I heard Toby screaming - both Bevan and I dropped what we were doing and went running to him!!

Toby complained of a sore knee and screamed whenever he moved.  I headed over to ED to get it checked out.  I explained to them that he was saying his knee was sore, but that the pain could have been coming from anywhere on his leg.  They only x-rayed the knee, but told me that the x-ray would cover quite a large part of the leg.  The results showed that nothing was broken, probably just some bruising to the knee and that I should just keep giving him Pamol and he should be much better in the morning.

Well overnight and in the morning Toby was still in agony, so I headed back over to ED.  This time they had a proper look at his leg and x-rayed higher up and found that he had a fractured Femur bone right under his hip.  The poor little man must have been in so much pain overnight.  I felt terrible for not pushing for more the night before in ED as I had a feeling it was something more than just bruising, but who was I to disagree with medical experts????!!!!!

The Orthopaedic Doctors decided to put him into a Hip Spica cast (down one leg, half of the other leg and up to his belly button) to keep the leg from hurting when moved and to protect it from becoming worse.  Toby had to be put under a general anaesthetic for them to do it (nothing new for him though!!).

The cast is hideously huge and he gets so frustrated at not being able to move (and I get frustrated at having to move him around the house every 5 minutes when he gets bored!!!!).  At the moment he is sleeping in our bed as he wakes half a dozen times when he gets uncomfortable and I have to change the position he is lying in - much easier if he is next to me.  Bevan has been kicked into Toby’s bed until the cast comes off hehehehe ;)

We had a bit of a drama organising Toby’s next trip to Starship for Chemo (which was just 3 days after his cast went on).  There were all sorts of hiccups which seriously almost did my head in - whether we went on an Air Ambulance or Air New Zealand flight, whether or not I was allowed a support person to help me with Toby because of his awkward cast, whether or not we stayed in Hospital longer so we could get on the Air Ambulance easier and to top it all off when I was told I was going Air New Zealand there weren’t any flights available to get us to the appointment on time because they were all sold out due to the Mission Concert - I felt so overwhelmed and just wanted to run away (it didn’t help that both Bevan and my Mum were away for the weekend and I was trying to sort this all out on my own, but thank God for cellphones though).  It was finally decided we would go on the Air Ambulance and even then on the Monday morning heavy fog delayed the plane!!!!  But we got there in the end, just a little late for our appointment. 

At Starship it was decided that Toby would have his Vincristine and Methotrexate through his Port, but he would not be able to have the Methotrexate via Lumber Puncture because of the cast - our Consultant said this wouldn’t matter, but we can’t help worrying that missing out on some treatment can’t be good? 

We are off to Auckland again on Monday 28^th February (if bloods are ok the day before) for more Vincristine, Methotrexate and possibly the Lumbar Puncture (although nothing has changed with the cast, so it probably won’t happen again this time around).

Toby will have another x-ray in 2 weeks time to see if the cast can come off or not.

So for me those few days were a real low point.  I just felt so gutted that this had happened to Toby when he already has so much to deal with and then to top it off there was the drama surrounding getting to Starship.  It just left me feeling so numb, frustrated and asking “why me” but I’m over it now - onwards and upwards right!!!??

Day 21 Standard Interim Maintenance Complete!!

Toby's bloods were done in Hastings Hospital on Monday 31st January and all the results were good, so we headed off to Auckland where he had more Chemo (Vincristine and Methotrexate).  All went well (apart from a bit of screaming and fighting when the needle went into the Port).  This time the amount of Methotrexate given was increased so it will be interesting to see how he reacts over the next week or so to that.

We are now home (fingers crossed) until Monday 14th February when we go back to Auckland for Day 31 Chemo and a Lumbar Puncture.

All going well (i.e. not ending up in Hasting Hospital or Starship with any infections etc) this will be the longest period of being at home in the last 3 months!!!  Yippee a whole 12 days at home :)