Tuesday, 28 May 2013

So much for time off!

May 20 - 28, 2013

So our 2-3 weeks off started off OK with good times on Monday and Tuesday at school.
On Tuesday night however, it all went a bit pair shaped.

At around 11.00pm Mitch woke up shivering and them vomiting.  His temperature went from 37.1 to 39.7 over the next 30-40mins.  After a call to the hospital and some consternation about whether to call and ambulance, Lisa drove him in to Emergency arriving around 12.35am.

Straight to ER and onto broad-spectrum antibiotics to try and cover off any number of infections.  His blood pressure dropped and heart rate increased during the night until the ER doctors started talking about an induced coma to 'slow things down'.  They had told Lisa that he had a blood infection (Sepsis) and, at that time, the infection was winning.

Fortunately, by the time I got to Resus that morning, where he had been moved during the night, his BP was starting to rise. Over the next hour he stabilised further and was moved up to ICU.

After more needles and arterial tubing was inserted, we spent the rest of that day and half of the next in ICU being tended to very closely and pumped full of various drugs and solutions. 

Sunday, 19 May 2013

Only so much iPad...

May 1 - 19, 2013
The start of May was good and bad.  Bad because the first week was a bit yuck and then Mitch's platelets were too low to start his next round but good because it means another week off and now feeling pretty good.

This meant a full week at school and almost normal life for us all.  It also meant Mother's Day was spent at home with all of us at home and a chance to catch up with some family.

A blood test on the Monday after Mother's Day saw platelets still low, but close enough.  The doctors didn't want to wait too long before getting the next block underway, so in on Monday night for our last session in this Interim Maintenance block.

The week was pretty standard for this block.  Flush with saline, Chemo, more flushing and waiting....and waiting... 
A little different this time as we were confined to one of the "Transplant" wards because the normal ward was full.  This is an air-locked ward with far fewer people, visitors and  passers-by.  Mitch entertains himself on the iPad pretty well between visits from nurses and the RCH teachers but towards the end of the week there's only so much iPad you can play to pass the time.
Saturday's residual chemo levels were so close... but yet so far.  That meant one more full day in because blood test results don't come back until 4.30-5.00 in the afternoon.
...at least it gave me time to catch up on this blog.

Doc's tell us we have 2-3 weeks "off" now until the 'Delyed Intensification' block begins.  We'll try and forget what we expect that to bring and enjoy the time at home.

Cheers all.  Until next time.

Tuesday, 30 April 2013

'Ding'...Round 3

Apr 16 - 30, 2013

So, to recap....Challenge in conjunction with the Richmond Football Club, offered Mitchell the opportunity to run out onto the MCG with the team at the against Collingwood.

Mitch and Harry K
Melbourne-town turned on a pearler of an Autumn day.  When we arrived we were greeted by the very excellent Tigers PR crew.  We met up with Thomas, the other little boy who was involved too and were taken down to the warm-up room with Aussie international soccer star, Harry Kewell in tow; he was doing the 'coin toss' for the day.  We saw the boys doing their final warm-up and met ex-captain Wayne Campbell.  Just before game time Mitch met and held the hand of 'gun' midfielder Brett Deledio.  They were taken up the race and on to the ground in front of the 85,000 strong crowd.  Through the banner with Captain Chris Newman and into the centre square and then back to the sidelines with Tiger Stripes.

Mitch, Stripes and Tom

The Mighty G

The 5 days in hospital the following week were fairly standard and ANZAC Day on the Thursday meant I could spend the day in and give Lis a rest.

This week we also got an update on the next phase of treatment and it wasn't quite as expected.  We thought that 'Maintenance' would follow 'Interim Maintenance' but not so.  The next phase for Mitch is called 'Delayed Intensification'.  This phase is nearly as intense as Induction.  So, back to a bit of a hard slog.

All done and home on the Friday night as scheduled (yay!) followed by a normal weekend full of netball, gardening and a little relaxing.

Monday was looking good for school but ongoing nausea meant he lasted only a couple of hours and only 40 minutes on Tuesday.  Let's hope it gets better for the rest of the week...

Tuesday, 16 April 2013

Boring is good....

Apr 4 - 15, 2013

I figure the fewer posts I do from now on, the better.

Round 2 of Interim Maintenance was a tad boring....which is good.

Mitch pretty much stops eating when he goes into hospital, so loses any weight he puts on when he's home, but his spirits were generally high for the 6 days he was in this time.
An interesting rash is about as exciting as it got medically this time.

Six long days of lying in bed connected to bags of various concoctions.  First a good flush that results in lots of peeing.  Then a slow bag of toxins, followed by more flushing with saline and 'antiserum'.....and lots of peeing - day and night.  Mitch definitely doesn't suffer from a shy bladder.  He can pretty much pee in front of anyone...and does.

Lots of visits again from nurses, doctors, social workers, play therapists, art therapists, teachers, Clown Doctors, etc., etc.  Challenge also visited and offered some footy tickets for the Tigers - Doggies clash; bonus!  They also offered Mitch an opportunity to "run" onto the ground with the Tigers before their match against Collingwood at the 'G' the following weekend, so (if all goes according to plan) keep your eyes out if you are watching the game and you might see him on telly.

Bubble Boy
School term 2 has started well.  Two out of two days so far and looking good up until Friday when we have a blood test and doctors appointment in at RCH in preparation for Round 3, which is slightly delayed to accommodate our appointment at the MCG on Saturday. 
Go Tiges!

Wednesday, 3 April 2013

Easter Break

Mar 25 - Apr 3, 2013

Happy Easter All.

It took a few days to recover after the end of the previous block, with a few worrying tummy pains, but the expectation of a holiday made for a speedy recovery.

For once the timing of treatment was kind to us and we were all able to get away for the Easter long weekend and enjoy time with friends.  Mitch enjoyed some sunshine, feeding the ducks, board games and some leisurely walks.

Easter 2013 - Nagambie

Blood test results on Tuesday indicated that platelets were a little low to begin the next round of treatment planned for Wednesday, so it's hold off on the meds and back in on Friday.
His appetite has returned this week and even a little weight gain.  So we'll try and get as much into him before Friday when the inevitable 'fasting' begins again.

Short, sweet and good!

Sunday, 24 March 2013

Third time lucky.

Mar 17 - 24, 2013

Mitch finally ended block two (with a lumber puncture and bone marrow aspirate) and began the third block of treatment, Interim Maintenance, on Tuesday.

All went well with the procedures and results from the bone marrow tests were promising.  The doctors said the residual levels of the disease were at (low) levels such that he wouldn't need a bone marrow transplant.  Very good news.

The 5 days in, 9 days out thing hasn't started well however.  5 days in has pushed out to 7 days and counting.  The chemo drug they use in this block gets pushed in, left for 24 hours to do its thing and then flushed out with some antiserum and lots of fluids.  Unfortunately, the flushing out is taking a little longer than expected.  Levels were close today but unfortunately not low enough to get to his Grandad's 80th.  Doc's also decided he needed a blood 'top up', so that will be after his levels are OK.

But hopefully home tomorrow....for 9 days!

Saturday, 16 March 2013

Waiting and Generosity

Mar 10-16, 2013

We have been in and out a few times over the last week for blood tests and appointments with the doctor.  Unfortunately...or fortunately, depending on how you look at it, platelets are taking a little longer to get to the required level than normal (what ever that is).  They have to be at 75 before he can have his 'end of consolidation' lumber puncture and bone marrow aspirate.  So, whilst it delays the start of Interim Consolidation, Mitch is really enjoying the break.  He is loving not having chemo or taking meds and has put on almost 2kgs over the past fortnight.

The long weekend was a highlight as he was able have mates over for a swim and muck around.  It was great to see the banter and interaction with his friends, who really just saw Mitch as Mitch...if not a little balder and skinnier.

He has managed to get to school for 3 (part) days this week.  Thursday was school photos and hospital visit day.  Our appointment was for 11.00a, which meant we had to in at the hospital at 10.00a for a blood test.  The school had very kindly scheduled Mitch's class first up for photos and Mitch first in line for the individual, so we were able to head off and make our appointment.  A big "thanks!" Warranwood PS.

Emily - WGS

This week has also been the culmination of the Leukaemia Foundations "World's Greatest Shave" campaign.  Emily (and BF Joycey) have been going door to door collecting sponsorship, as well as on her campaign website, for her to dye her hair for the WGS.  We have also had friends supporting the Leukaemia Foundation and Mitch too; thanks Max and Maddy Stainkamph.  Emily also had some amazing support from new friends in the US...particularly Beth from Montoursville, Pennsylvania who raise around $500 in a very short time.  Thanks Beth.  Funds raised will be over $1800 with her door to door collections added to website donations.

Mitch and I had another 'wow' moment on Thursday while we were shopping.  We'd been into the supermarket and the bakery and as we were leaving the bakery a senior cit (about 80+ at a guess) came up and asked, "Has the young fella had treatment has he?".  As I am replying "Yes, going through some chemo at the moment...", he is putting a $50 note in Mitch's hand and telling him to "buy something nice for yourself".  Taken aback, thanking him profusely and wondering, do we accept this?... or risk offending a lovely old man by not doing so, he casually walks away as if it's nothing out of the ordinary.  Mitch (for which a 50 is quite a windfall) and I are left there still in a little shock.  He and his wife get into a circa 1980 Ford stationwagon a little worse for wear.  Wow.
Mitch decides, pretty much straight away, to give it to Em to support her fund raising.

At Thursday's appointment we were told to come back on Monday because platelets were close but not quite there. So, another weekend free and more time for another catch up with mates.