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.

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.