39.4 Degrees

23-24 Feb, 2013

Mitch had been pretty lucky to date, at fending off infections, even during very low immunity.
Saturday however, we watch his temp go from 37 up to 39.4 degrees.  At a sustained 38 the hospital like you to call.  So at around 4 o'clock I gave them a buzz and was told "better to be safe than sorry" and to come in.  So we packed up and headed into Emergency.
The ER team took the usual obs - pulse, blood pressure and temperature and then accessed his port and took some blood.  At around 6.30pm they gave him his first dose of antibiotics and some anti-nausea meds.
By 7.30pm we were admitted and moved up to the ward.  Another blood transfusion, more antibiotics, etc., etc.

Sunday morning was yuck, chuck and teary (Mitch too).  His temperature was down but a sore tummy and nausea meant a horrid morning.  More antibiotics, Panadol, anti-nausea meds and platelets at about lunch time ....Mmmm tasty.

Lisa and I did the tag team at about 2pm just after the (3rd) doctor told us he'd be in until at least Thursday.  They insist he have at least 24hrs fever free and off antibiotics beore being released.

Prep - Day 1

No worse, no better.

Feb 18 - 22, 2013

Following our excitement of the weekend, the week has been pleasantly boring.

Mitch has been very brave during his injections in at RCH on Monday, Wednesday and Friday.  I'm sure if he drank too much he's leak like a sieve.

The boy has been a little up and a little down but pretty stable.  Eating some days and others, not so much.

A visit from his teacher on Thursday was a highlight, well received and very much appreciated.  Thanks Mr Harrop, Mitch can't wait to get stuck into his maths..??!

Mitch and Brodie, Nov 2004

Anna, meet Mitch.

Feb 13 - 17, 2013

Wednesday and Thursday were quiet for Mitch, who we dubbed 'Casper' for the week.  His blood test results, from bloods taken by the Royal District Nurse on Thursday, came back with very low platelet and red cell counts.  The hospital said this would mean top ups on Friday of both platelets and blood and that chemo would now be moved to Saturday.  Pleasingly, he has eaten quite well the last couple of days.

Mitch and Lisa headed in (to RCH) early Friday morning to get things started.  He'd had both blood and platelets before.   A fairly uneventful platelet transfusion first, then blood.  Some minutes into the blood transfusion Lisa noticed a little swelling of the lips and left eye.  A reaction to the platelets apparently, which Lisa was told was a bit odd, especially as this time they were from a single donor, as opposed to a "mixed bag", where it is more common to have an allergic reaction.  A dose of phenergen and a big sleep and 10.5 hours later they were home and all was well.

Saturday morning saw a respectable 9.00am appointment for chemo. Vincristine and PEG Asparaginase today.  Again, he'd had both of these before with no particularly bad side effects.  Anti-nausea meds and Vincristine went in via his port with no dramas.  Five (5) mil into 100ml of the Asparaginase however, Mitch began saying his throat felt a bit funny.  I then noticed a rash starting to form on his head, which quickly spread to his neck and the rest of his body.  The nurse stopped the IV immediately, whilst Mitch's throat and breathing got worse and he (we) got a little distressed.  The nursed called a MET and within minutes we had around a dozen doctors and nurses in the room.  His main oncology doctor for the day, very calm and direct, called for an Adrenaline jab followed by a hydrocortisone and anti-histimine (more phenergen) IV push.  It got worse before it got better but pretty quickly the meds began to work.  They added oxygen and a steriod nebuliser before his breathing returned to close to normal.  Whoa!....So that's what an Anaphylactic reaction looks like!  Sympathies to all you "nutters" out there.....Good ol' Anna Phylaxis.

So, we will be staying overnight for observation and have to move to a different (non-IV), less reactive version of Asparaginase.  Unfortunately, this new version is via injection and spread over 6 doses over 12 days (?), probably starting Monday.

He is closely monitored over the rest of Saturday and apart from the normal nausea from chemo and a few chucks he has no other signs of a reaction. 
We were home by lunchtime on Sunday arvo, after a detour to Hoyts Eastland for some cinema popcorn, which is the only thing he feels like eating.

Little Aths 2010

  

Off to school...

Feb 11- 12, 2013

We were hopeful for a Monday start to the school week.  All looked pretty good Sunday night... until dinner came up at 2.30am.  Monday morning saw a slow start and a visit to his Nan and Grandad's, rather than school.

Tuesday was a similar slow and verrry pale start but, after some encouragement, Mitch decided he would head off to school.  Lisa had an earlier than normal start so I dropped Brooke off at school and came back for Mitch.

I asked Mitch if he'd like me to walk him to his class room but he said, "No. I'm right".  As a parent of any sort of sick kid, there's always that "am I doing the right thing?" question that runs through your mind.  We've all had those days where we've told them to "suck it up" and get on with it, only to find they were genuinely ill or had a broken bone.  Kind of the same.. but kind of different with a Leukaemia kid....
It filled me with pride to see him hop out of the car and make his way to the school crossing.

He lasted to recess and Lisa picked him up from the sick at noon....but at least he got there.

Quite a happy evening even though he's white as a sheet.  He actually ate some tea!  Let's see what tomorrow brings...




Bluetack fun 2010

Another day, another med

Consolidation - Block Two

Block Two has basically the same regime as block one but without the weekly lumber punctures (Yay). It started out with the challenge of getting a shrunken stomach used to having something in it again.
Lots of suggestions from friends and dieticians help but at the end of the day its up to Mitchell.

We have been feeling a little guilty about keeping Mitch away from family and friends but are really trying to minimise his exposure to outside influences as possible.  Over cautious...maybe... but a decision we felt has paid off.
With both Lisa and I back at work it has been a little tougher but nice to be able to call on family, who have missed him dearly.  Thanks grandparents, aunts, uncles, cousins and friends who have helped in various ways.

   ----  Finally up to date.  I'll try and post daily updates or milestones at least from now on    ------

Feb 10, 2013

A lazy Sunday morning. An hour to take half his meds but finally there.  Overall he seems to be feeling pretty good.  Good enough to have a friend over.  Sure, they sit and play on the PC but the interaction is nice to see and hear.
A little chuck taking his "anti-chuck" (a little irony) meds but that's about it.  A good day.  Looks like school tomorrow.

Daily challenges

The new reality

Induction Phase Results

Favourite Past time

The steroids really had quite a dramatic effect on Mitchell's appearance.  New chubby cheeks and a mini-pot belly changed his normally lithe look.  He almost looked 'healthier' than normal.

Our high hopes for a great result, given Mitch's high spirits and infection free month, took a bit of a beating when the results of his Day 28 tests came back less than good.
Generally blood components were OK but the percentage of blasts in his blood were significantly higher than expected.

These results bought all our spirits down.  The doctor reassured us that it was common for levels in some patients to take a little longer than normal and that the next phase of treatment would have been the same regardless.

Block two - the consolidation phase - runs for 8 weeks and is broken into 2 x 4 week blocks with different treatments in the 2 blocks and another assessment of blast levels at the end.

Consolidation - Block One
 
New meds and weekly lumber punctures for the next four weeks actually started off OK.  A few less oral meds replaced with an injection 4 days in a row each week that we administer through an Insuflon.  Mitch commented that he much preferred this set-up.
A couple of weeks in and he'd changed his mind.  The Friday lumber punctures plus chemo took its toll.  Even taking meds at home got harder because head aches and nausea made it very difficult.  Lots of vomiting and corresponding weight loss over these weeks changed Mitch's appearance again.

This first week was particularly tough on Lisa because the girls and headed down to Apollo Bay for a week that had been booked last year.  We all felt really guilty but had a great week.  This was also the week Mitch had is port 'installed'.  This will make further I.V . treatment easier and quicker in future.

At the end of the second week continued headaches and a sore stomach meant a few days back in hospital.  Constipation can cause all sorts of issues - in particular sore stomach and headaches.  Lots of saline and laxatives was step one and then getting some food back in a very empty stomach, step two.
The rest of the family were all brave and had blood tests this week for any future bone marrow transplants.  We sincerely hope we don't need to but ....just in case.






Day 1 - 2013

Fortunately Mitch got well enough and was at the right time, in terms of his immunity, to make the first day of school, something we were all very happy to see.  It was a big day for his sisters too, both at new schools.  His next day was a week later but at least it's a start. 

Eating and meds are still big daily challenges.  We have managed to take some pills without having to crush them to a powder....but not often.  All the med taking "logic" we try to convince him of, doesn't make it any easier.