Port Insertion and Day 11 Standard Interim Maintenance

Toby’s Port-a-Cath was finally inserted on the 13^th January.  The operation took around 2 hours and then we had to wait at Starship for 4 hours afterwards to make sure everything was ok.  The operation went really well - Toby was a bit grotty and uncomfortable afterwards, but nothing an ice-block and some Pamol couldn’t fix!!

Toby has a very small cut on his neck and a larger cut just under his armpit where the Port sits - you can see it and feel it sticking out under the skin which is a bit gross!!

Since the Port has been inserted we have been back to Starship for another round of Chemo (Day 11 Standard Interim Maintenance).

Before the Port is accessed for anything, numbing cream is put over the skin where the Port sits and it is left for around an hour.  A special needle is then inserted through the skin and into the Port underneath and is then attached to an IV line which the Chemo gets put in through.  Toby kicked up a bit of a fuss when the Nurse was putting the needle in, but it was much easier than the PICC line and has so many more benefits (like being able to swim and not having lines hanging out of his arm!!!).  The Port will stay in for the next 3+ years.

Toby has been doing really well over the last couple of weeks and hasn’t been showing any nasty side effects of the Chemo.  He has been eating well, running around and behaving like any normal 2 year old!!

He is due for more bloods on Monday 31^st January at Hastings Hospital and all going well we will head to Auckland for the next round of Chemo ( Day 21 Standard Interim Maintenance) on Tuesday 1^st February.

Just woke up after Port Operation :(



Illustration of how the Port looks under the skin and the needle that is inserted to give chemo etc

Standard Interim Maintenance.......finally!!

Toby's bloods were taken at Hastings Hospital on the 4th January and the results were good, so off to Auckland we flew for two days (just Toby and I) to begin Standard Interim Maintenance.  Because his PICC line was removed last week due to the infection in it, Toby had to have an IV line inserted into the back of his hand for the chemo treatment which is never a nice thing, but he was very brave.  He was given IV Vincristine which only takes a minute to go through and then IV Methotrexate which goes in over 15 minutes.

Toby has been doing really well after this round of treatment - he has even been running (a little slower than he used to, but it's still excellent to see!!).  He has been vomiting after big meals over the last two days, which I'm pretty sure is a delayed reaction to the chemo, so that's not very nice but all part of it I guess.

The Standard Interim Maintenance course lasts for 8 weeks (56 days) and requires trips to Auckland for IV Vincristine and IV Methotrexate on Days 1, 11, 21, 31 and 41 of the course, plus on Day 31 Toby will have a Lumbar Puncture for some Methotrexate into the spinal fluid.  He is only on one type of oral medicine at the moment which is great!!

We are off to Auckland tomorrow (Wednesday) until Friday for Toby to get his Port-a-Cath put in finally :)

A week of frustration!!

A wasted trip to Starship

Toby was due to start the next phase of treatment called Standard Interim Maintenance which will last 8 weeks.  For this to begin his Neutrophils (or basically immunity) had to be greater than .75 so on Tuesday he had bloods done in Hastings to check his levels.  The levels came back at .50 so the Doctor told us we would not be flying to Auckland the next day to begin the SIM phase.  However, a couple of hours later Starship called to say that they still wanted to see us even though his bloods weren’t right.  I called Hastings Hospital to arrange flights and the Nurse I spoke to thought it was weird that we were still going to Starship with his levels being so low so rung them to double check and they still said yes we needed to go up.

I dragged my butt out of bed at 5:00am on Wednesday, woke Toby at 6:00am and got to the airport at 6:40am for our 7:00am flight.  I was so brave and went all on my own without Bevan too!!  We were in the middle of talking to the Doctor at Starship when she looked at Toby’s blood results and realised that they were too low to start treatment, so told us we had to turn around and go back home again!!  It wasn’t her fault, it was the Doctor that was on the day before who hadn’t realised it was Toby’s first day if SIM when the levels had to be greater than .75.

The earliest flight we could get back to Napier was 3:10pm which meant hanging around in the Hospital waiting room for 3 hours and the Airport for 2 hours.  To make the day even worse, just as our plane was called to board, Toby decided to do a huge power chuck all over himself and his pushchair - nice!!!!

Antibiotics again

The day after arriving back from our wasted trip to Auckland, Toby woke happy but his cough seemed to be worse.  He fell asleep in the chair around lunchtime and before I put him into his cot I checked his temperature as he felt hot – his temperature was 38.1.  Any temperature over 38 needs to be monitored closely especially when his immunity is low as it may indicate an infection.  I kept an eye on his temperature while he was asleep and it went up over 39 so when he woke we headed over to Hastings Hospital where we were admitted and Toby was put onto IV antibiotics.  They also took bloods and did a chest x-ray.

I ended up spending New Years Eve 2010 in a very quiet and empty feeling Hastings Hospital – not exactly my idea of how New Years Eve should be spent, but it could have been much worse I guess.  At least I still have my precious little man around J

The results came back on New Years Day to say that there is a bug in Toby’s PICC Line (yes the same PICC line that was meant to be removed before Christmas grrrrr!!!).  I’m not sure what will happen, but for now we are in Hospital for a few more days on IV Antibiotics.

Mercaptopurine Tablets

Every day for a month Toby had to take Mercaptopurine tablets which suppress his immunity.  It is recommended that these are taken at night time and have to be taken 1 hour before eating or 2 hours after eating.  Trying to work that into the routine of a 2 year old that is constantly snacking right up until he goes to bed has been a mission!!!  The best way for us to give him the tablets on an empty stomach has been to get up in the middle of the night (usually around 2:00am).  The tablets had to be dissolved in water first and given in a syringe and then I sat up with him for at least half an hour afterwards to make sure he didn’t vomit the tablets back up (which he did a couple of times meaning another tablet had to be given and another half hour up making sure that one stayed down!!!!).  It was a very tiring month, but for now the tablets have finished for 16 weeks, but then they start up again every night for a couple of years (I think) – fun!!!

An awesome Christmas Day

We had a great couple of weeks leading up to Christmas with Toby almost being back to the way he was before diagnosis.  Active, chatty and cheeky – even getting into my Tupperware cupboard and pulling the contents out like he used to!!  It was fantastic to see, but sad when I stopped to think about the fact that he was still sick and that the good mood probably wouldn’t last L

It did however last for Christmas Day which was all I was hoping for.  We had lunch at my sister’s house and Toby enjoyed hanging out with Sam and his four girl cousins!!  Then we enjoyed a nice quiet tea with Bevan’s Mum and Dad at our place.

No Port yet :(

Starships Theatre schedule was running behind on Thursday so it meant that Toby's Port-a-Cath insertion was delayed.  We are not sure exactly when they will do it now, probably mid January which unfortunatley is a busy time for us, so bit of a bummer!

Toby still had a lumbar puncture and spinal chemo.  That all went really well and we arrived home yesterday.  We don't go back to Starship until the 29th December, but still have to go to Hastings Hospital for Toby to have his PICC line flushed, dressing changed and to have some blood tests, but I can cope with that much better than having to travel to Starship the week before Xmas!!

Fuzz..............

Ohhh I forgot to say that Toby has finally had all his hair shaved off!!!!!!  I kept putting it off, but it was getting so thin and malting so much that it was about time we did it.

Bevan cut it with his clippers and Toby sat there like such a big boy!!

I am happy to say that I love it - it looks so gorgeous and feels devine!!  It's just like having my 4 month old baby boy back again :)  He now has a couple of new nicknames - Fuzz, baldy and Pugsly (from the Adams Family!!!).

He still has a little bit of hair there, but the specialist said that a new drug he takes in the next stage will make that all fall out.

Showing off his new hair cut

Checking out CCF Auckland's Xmas Tree :)