Welcome 2013......

Well here we are in another new year and the last full year of treatment - yippee!!! Chemo treatment finishes in January 2014 so we are counting down :)

Things have been going along nicely over the Summer.  Toby's health has been great apart from some funny bloods in October/November that showed Toby's liver levels were much higher than normal.  He was tested for a number of things including Hepatitis A, B, C and Parvo Virus (all of which can cause dodgy liver levels), but everything came back negative and his levels returned back to normal after having a 'holiday' from oral chemo tablets for a week.

Toby is now attending Afternoon Kindergarten three times a week and he is absolutely loving it and making some great friends.  I have had to pull him out for a few weeks though at the moment as there is a Chicken Pox outbreak and we don't need that with a trip to Starship coming up in two weeks time!!  Once the Chicken Pox outbreak is over he will be moved to Morning Kindergarten.

Since I last wrote in September 2012 Toby has had two trips to Starship for his routine check-ups and Spinal Chemo (September and December) and has had four trips to Hastings Hospital for check-ups and IV Chemo (October, November, January and February). Those treatments all went well.

Toby is due up in Starship on the 13th /14th March for a check-up and Spinal Chemo.

Toby continues to amaze me the way he just gets on with life despite the fact that some days he must be feeling crap!!!  He is such a lovely little boy - cheeky, sensitive and loving.  I just look at his gorgeous face and my heart melts with love - I absolutely adore him :)

Since May.............

So here’s what’s been happening since my last post in May.  Nothing major, still just trucking along.

7th June

Chemo at Hastings - all went well, but Toby has started protesting pretty strongly about having finger pricks done / port accessed - this makes it quite difficult for the Nurses and horrible for me to watch.

4^th July

Chemo at Starship - all went well. 

Ronald McDonald House celebrated Independence Day today with volunteers Coca-Cola providing an American style dinner.  It was so neat as they had decorated the dinning room with streamers, balloons etc in red, white and blue - it looked so cool and almost brought me to tears seeing how much effort had been put into giving the families such a fun night.  They also had a clown making balloons for the kids.

When we got to the Airport on the Thursday to go home we found out that heavy fog cancelled our flight home which created a bit of a drama!!  We managed to get a taxi back to RMH where they found us another room and we just had to wait it out until flights became available.  No one really knew when flights would be going again and I just wanted to get home (and was running out of clothes, food etc!!), we had the option of going via bus the next day but I wasn’t too keen on that option considering it was a 7 hour bus drive with a 3 year old!!!!!  So we opted to take a 2 hour bus trip to Hamilton and my darling husband picked us up from there (after I twisted his arm big time!!!!!).  We arrived home about 8:30pm absolutely shattered; it was so good to be home.

12^th July

Toby developed a nasty cough again so we headed over to Hastings Hospital for a check up and he was put on a course of Antibiotics and sent home.

17^th July

Toby’s cough wasn’t getting any better so it was off the Hastings Hospital again where this time a chest x-ray was done, Antibiotics were changed to a stronger type and we were sent home again.  I was told 10 days later that it was most likely Pneumonia that he had but that wasn’t mentioned at the time grrrrrrrrrrr!!!!

2^nd August

Chemo at Hastings Hospital - all went well.

30^th August

Chemo at Hastings Hospital - all went well (apart from the biggest screaming, crying and kicking performance from Toby EVER!!!).  Poor little bugger.

9^th September

Our baby turned 4 years old!!!!  He had a fantastic Batman party and celebrated with friends and family.

10^th September

Toby had a really nasty coughing fit an hour after he went to bed.  It came from nowhere and scared the crap out of me - I really thought I needed to call an Ambulance - he just couldn’t catch his breath.  I rushed him over to Hastings Hospital (by which time he had come right).  His oxygen levels were up and down so we were admitted for the night and sent home in the morning on another course of Antibiotics.

26^th September

Due in Starship for his 3 monthly check-up and spinal chemo.

May 2012................

Well not much to report in regards to Toby - he has been doing SO well.  It is so hard to even remember what his body is dealing with when he looks so good.  I’m getting very paranoid about winter coming and all the bugs it brings, but not much we can do about it!!!

I came across this post on Facebook last week by a Mum of a boy here in NZ that has Cancer (unfortunately a far more serious type than Toby).  It really hit home and got me thinking:

“I should have just dropped baby off at crèche, we should have blasted the sounds on the way and sung or little hearts out on the way like we did every morning. I should be now sitting in my office, lost in my chapters.  R*** should be at work. I should be clock watching so I can shave a good couple of hours off my day to pick bubba up early and go play. But I’m not - I’m packing a just-in-case overnight bag, getting meds sorted, telling our neighbour she may need to feed our cat tonight, consoling C**** after telling him he can't eat because he is having surgery, fixing my mascara from tears already and packing us into the car. Our actions are followed everyday by so many other families. We will chat in the waiting room, put on fake smiles, make idle chit chat to cover the angst we are all feeling inside. Just another difficult day on top of an Everest of difficulties to date, this one particularly so. If I ruled the world it would work on a trade system. I would have mums dads and grandparents lining up to trade places with their children and mokos in a heartbeat I’m sure”

I often have days like this where I think of what we should be doing as a “normal” family.  Toby should be at afternoon Kindy having fun, learning new things and making little friends and I would be making the most of the time away from him by catching up with friends, having a wee nap, exercising, baking, shopping, running errands etc or perhaps by now I would even be sitting at home bonding with a new baby? 

As a family we would get out more to playgrounds and fun public places and away on more family holidays.

As a wife perhaps I would be enjoying more date nights or weekends away with my husband. 

Maybe I would have more time to do fun things with Sam instead of having my time taken up sitting around hospitals, keeping records of medications, appointment dates, beads of courage earned, blood test results etc, giving medication, making sure bags are packed ready for emergency hospital trips, packing and unpacking when we head to Starship, taking temperatures, making sure everyone is washing their hands and sanitizing so often, trying to entertain and educate Toby on my own, keeping blogs and of course fighting against people who try to claim they can cure cancer lol ;)

On the upside I have spent the past 19 months with Toby pretty much constantly by my side which has been tiring, but amazing and the bond we share is something I can not describe and as my Facebook cover once said “Be thankful for the bad things in life, for they open your eyes to the good things you weren’t paying attention to before”.

Just trucking along.........

Since last time I wrote Toby has had his usual monthly chemo via IV at Hastings Hospital in February and again in March. 

On April 11th and 12th he had the usual 3 monthly clinic appointment, chemo via IV and chemo via Lumba Puncture - all went well.  His Neutrophils (immunity) was up quite high, so his daily Mercaptopurine (chemo) tablet dose was increased to 100% of what his body should be able to tolerate, so here's hoping that doesn't make things go backwards.

Toby has been doing really well lately (apart from that annoying cough that sounds like a chainsaw and never goes away).  He's well and truly just like any other 3 1/2 year old - energetic, cheeky as and full of attitude and mischief!! 

There are no words to explain how much I love him and how amazing I think he is.  It's hard not to dwell on the last 18 months and think about how much the poor little bugger has missed out on and why this hideous illness picked on him :(

I have heard of and met so many newly diagnosed kids lately and also heard of so many kids that we met at the beginning of our journey that have either passed away or that have relapsed and it's hard not to let that make me think "what if" which up until now I have blocked out, probably because Toby has been so well and all of a sudden something happens to make you realise that this is serious and that he is really vulnerable.  It's like a scary nightmare that you are just begging to wake up from.  Hopefully one day it will actually feel like that is what's happened and it will all be a distant memory, but for now I just have to take what comes my way and make sure I cherish each and every day.

Thank You Anonymous :)

I went to the letterbox today and in it I found a lovely card with beautiful words from an anonymous person who was full of admiration for how we have dealt with Toby's illness.  In this card was also a decent amount of cash and a note in the card telling us to use the cash towards a family outing, dinner or a night out for just Bevan and I.

 

We have no idea who this came from, but if you are reading this then we wish to say a huge THANK YOU to you.  What a thoughtful thing to do, I just cannot even find words to express how grateful we are to you.  We wish we could thank you in person!!

 

We are going to use the money to do something fun as a family - we enjoy our family time together and it is great to spoil the boys for both being so brave throughout this journey.

 

Thank you so much, it is nice to know there are still people out there in this world that do kind things for others.

 

"The smallest act of kindness is worth more than the grandest intention.”
Oscar Wilde

Welcome to 2012

Well here we are in February of 2012 already!!!!

When I last wrote Toby was due for his routine monthly chemo in Hastings Hospital - this was a straight forward visit and all went well.

I was holding my breath as we approached Christmas (especially because we were having Christmas Dinner at our place with 18 adults + 6 children!!!) so i really needed Toby to be well.  Luckily he was 100% and we had a fantastic day with our families.  I can't describe how good it felt for everything to just feel "normal".

On Wednesday 18th January we headed up to Starship for the usual stuff (clinic, bloods and chemo via Lumbar puncture in theatre) and all went well again.  Bevan made the trip with us for the first time in ages which was neat.

Toby has been really well since our last Hospital stay (for high temps) in early November.  He has put on weight, his hair has grown like crazy and he has SO much energy!!!  I even asked the Oncologist at Starship if it was ok for him to be doing so well as I was a little worried he wasn't looking sick enough!!!  He said that he was just one of the lucky ones.  I guess the summer months will always better with less bugs around than in winter though anyway.

We have had a busy month with our Annual family trip to Palmerston North (for speedway) and a trip to Mount Maunganui (for Bevan's Great Aunt and Uncles 60th Wedding Anniversary celebrations).  We are just so thankful that Toby was well enough to make those trips with us :)

The latest dilemma in our lives is Kindergarten.................to send or not to sent?  That is the question!!! Basically if we put Toby into Kindy then we are putting his health at risk due to all the bugs he can catch easily from other kids (so he would end up in Hospital lots and possibly extremely sick) and if we don't put him in then he won't be getting that interaction with other kids, or the learning and skills he will need in preparation for School.  Arrrggggghhhh it is seriously doing my head in, but I am the only one that can make the decision and I'm not so good at making decisions!!!!  It's just so frustrating having to rely on other parents not sending their sick kids to Kindy in order to protect mine (and don't even get me started on parents who don't immunise their kids grrrrrrrrrrrrrr).  Anyway, that's just a little rant and I'm allowed right??!!

Next on the agenda is Toby's routine monthly trip to Hastings Hospital for chemo on the 16th February.

October / November / December 2011 Update………….

Since my last post things Toby has been doing pretty well.  His nasty cough has continued to come and go which is always a bit of a worry, but numerous x-rays have been taken and there isn’t really much that can be done other to put him on Antibiotics as a precaution when it flares up.

September 29^th Toby had his routine monthly Chemo at Hastings Hospital - all went well.

October 26^th / 27^th we went to Starship for Toby’s 3 monthly trip to see his Specialist and to have his Chemo via Lumbar Puncture - all went well.

November 11^th Toby’s temperature got up to 39.3 so he was admitted to Hastings Hospital for 3 nights for IV Antibiotics.  It was a bit of a nightmare stay as he was so full of beans that he almost drove me insane being stuck in the tiny Hospital room!!!

November 24^th Routine monthly Chemo at Hastings Hospital - all went well.  Bloods showed Toby’s immunoglobulins are low so he may been given a boost of these next time he has Chemo.

November 29^th I had a call from Starship to say that they would like Toby’s oral Chemo dose increased a little to see how his body reacts.  Before now he was only on around 75% dosage for his age as it kept knocking his neutrophils (immunity) too low.  Will be interesting to see how he goes.

November 30^th Toby’s cough got quite bad and his temperature got up to 39.1.  He had some bloods taken at Hastings Hospital which showed he wasn’t Neutropenic (low immunity), so he was able to come home with oral antibiotics - whew!!!

December 8^th Bloods taken to check levels and all looking good :)

Toby is due for his monthly Chemo at Hastings Hospital on 22^nd December and then we are due in Starship for his 3 monthly trip on the 18^th / 19^th January 2012.