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.
Tuesday 28 May 2013
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.
-0557.jpg)
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.
-0557.jpg)
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.
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.
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...
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.
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| Mitch and Harry K |
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| Mitch, Stripes and Tom |
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| 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.
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!
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.
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| Bubble Boy |
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.
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!
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.
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| 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!
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.
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.
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.
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| 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.
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| Siblings |
Saturday 9 March 2013
Home again, home again...
Feb 4 - 9, 2013
So the stay is extending to a little longer than expected. The infection is gone and now we are waiting for the blood counts to come up. A little frustrating for Mitch who doesn't understand why he's still being kept in. He has had a minor reaction following a blood transfusion but nothing that worried him particularly.
Lisa's birthday has been a little different to previous years. A special day spent with Mitch and the fantastic staff at RCH. The girls and I headed in after work with cake, pressies and cards from friends and family. No candles allowed in the hospital though.
A belated present arrived on Wednesday with the news Mitch was being released today. Blood counts were improving. After lots of information about his next treatment block they headed home, arriving early afternoon following a visit to Lisa's work for a catch up. Yay, back to some normality.....I wasn't enjoying the single parent thing! More Power To You; all those SP's out there!
The Interim Maintenance treatment block is an intensive 5 days in and then 9 days out for 4 cycles with oral meds daily too.
Mitch's hair is beginning to sprout and he has a nice soft peach fuzz. Unfortunately it's doomed with the next treatment block but nice to see for now. Some form of appetite is beginning to return for now too, so he pretty much gets what he wants. Just nice to see him eating! Overall we're feeling pretty good.
So the stay is extending to a little longer than expected. The infection is gone and now we are waiting for the blood counts to come up. A little frustrating for Mitch who doesn't understand why he's still being kept in. He has had a minor reaction following a blood transfusion but nothing that worried him particularly.
Lisa's birthday has been a little different to previous years. A special day spent with Mitch and the fantastic staff at RCH. The girls and I headed in after work with cake, pressies and cards from friends and family. No candles allowed in the hospital though.
A belated present arrived on Wednesday with the news Mitch was being released today. Blood counts were improving. After lots of information about his next treatment block they headed home, arriving early afternoon following a visit to Lisa's work for a catch up. Yay, back to some normality.....I wasn't enjoying the single parent thing! More Power To You; all those SP's out there!
The Interim Maintenance treatment block is an intensive 5 days in and then 9 days out for 4 cycles with oral meds daily too.
Mitch's hair is beginning to sprout and he has a nice soft peach fuzz. Unfortunately it's doomed with the next treatment block but nice to see for now. Some form of appetite is beginning to return for now too, so he pretty much gets what he wants. Just nice to see him eating! Overall we're feeling pretty good.
Sunday 3 March 2013
The week that was.
Feb 25 - Mar 3, 2013
Mitch is still in hospital after his high temp due to an infection. There were lots of samples of all sorts taken and tested but it wasn't clear, as it apparently rarely is, to identify the source of the infection. All things going well he should finally come home on Monday. His immune system has to be seen to be recovering before they'll discharge him.
A pretty tough week with lots of antibiotics and his chemo injection every second day.
More tag teams this week with an appreciated third member to ease the load. Thanks Nan!
On Saturday his platelet counts were low so a transfusion was on the cards. Shortly after it began Mitch started itching his ears and said " Dad, I think I might be reacting to this lot too". Surely not. I couldn't see a rash...at first.... Five minute later it was everywhere, his temperature jumped by 1.4 degrees and he was super itchy all over. The nurses administered some antihistamine and then the doctors prescribed some steroids. No immediate relief unfortunately, so out came the trusty Calamine Lotion. Finally, 45min later, at little comfort.
Not sure what we do if he needs another platelet transfusion from here but reports today are saying they are going up on their own.
Finally we are at the end of the 'Consolidation' Phase. No more injections for now and in to 'Interim Maintenance', depending on the results of an imminent bone marrow aspirate. At 25.5 kgs we are hoping an apetite returns soon too.
Mitch is still in hospital after his high temp due to an infection. There were lots of samples of all sorts taken and tested but it wasn't clear, as it apparently rarely is, to identify the source of the infection. All things going well he should finally come home on Monday. His immune system has to be seen to be recovering before they'll discharge him.
A pretty tough week with lots of antibiotics and his chemo injection every second day.
More tag teams this week with an appreciated third member to ease the load. Thanks Nan!
On Saturday his platelet counts were low so a transfusion was on the cards. Shortly after it began Mitch started itching his ears and said " Dad, I think I might be reacting to this lot too". Surely not. I couldn't see a rash...at first.... Five minute later it was everywhere, his temperature jumped by 1.4 degrees and he was super itchy all over. The nurses administered some antihistamine and then the doctors prescribed some steroids. No immediate relief unfortunately, so out came the trusty Calamine Lotion. Finally, 45min later, at little comfort.
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| All Pink...Not Happy! |
Finally we are at the end of the 'Consolidation' Phase. No more injections for now and in to 'Interim Maintenance', depending on the results of an imminent bone marrow aspirate. At 25.5 kgs we are hoping an apetite returns soon too.
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| Mmmm...Nutella (Oct 2003) |
Sunday 24 February 2013
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.
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.
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| Prep - Day 1 |
Friday 22 February 2013
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..??!
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..??!
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| Mitch and Brodie, Nov 2004 |
Sunday 17 February 2013
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.
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.
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| Little Aths 2010 |
Tuesday 12 February 2013
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...
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| Bluetack fun 2010 |
Sunday 10 February 2013
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
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| Favourite Past time |
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.
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| 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.
Thursday 31 January 2013
Reality
Preface - by Richard Johnston
"You have Leukaemia."
Nothing prepares you for news like this.
You don't really know how you'll handle it until it's thrust upon you.
And "handling it" isn't a singularity...it's a daily strain / reaction / decision / struggle.
The thing that most will discover is, you are far stronger than you think.
As parents of Mitchell, our eleven year old boy, the experience, whilst not quite the same as for him, was (is) just as emotional and challenging.
Initially surreal, because it's one of those "it will never happen to us" scenarios, reality sinks in very quickly. The paediatric oncology ward is an eye opening, heartbreaking and, sadly, busy place that snaps reality into focus.
How did we find it?
Mitch had a cold that lingered a little longer than normal. By week 3 we decided that a trip to the doctor for some antibiotics was required to get rid of it. After 2 courses of penicillin (Augmentum) the cold gone but, what we thought was a reaction to the penicillin, large welt / rashes appeared on his chest, stomach and back. We treated these with some antihistamine that seemed to relieve it temporarily. One odd result, that followed the rashes, were what looked like tiny blood blisters or freckles, we now know these were petechiae, a common symptom of a low platelet count.
Nearing home we passed Mitch's school and he became quieter than normal. On getting home he put himself to bed and we found him crying quietly soon afterwards. Apart from the relief of being home, he was worried about school and his friends.
Days Seven - Twenty Seven
Taking meds is a daily grind. Lisa and I had said on a couple of occasions over the years that we hoped Mitch never gets sick because taking medicine of any kind has always been a big struggle.
It is definitely a big struggle that takes hours each time.
After his hair started to fall out and start to annoy him he agreed, after many suggestions from Em, to let her shave his head. Wow, seeing the little bald head really hits home that our boy has cancer.
12.12.2012 Em's birthday was somewhat over-shadowed, which didn't really upset her but Mitch did get quite upset that she didn't want a party.
Christmas Day
A little different to past Christmas's. Given Mitch was neutrophilic over this period we decided he should probably minimise his exposure to potential bugs so I took the girls to my Mum and Dads for lunch and Lisa took them to her Mum and dads for dinner.
He certainly didn't miss out on presents although didn't quite enjoy them as much as he had in the past.
Day Twenty Eight
Lumber Puncture and Bone Marrow Aspirate today. This will top up preventative chemo in the spinal fluid and provide a marrow sample for analysis and testing of blast levels at the end of the induction phase.
"You have Leukaemia."
Nothing prepares you for news like this.
You don't really know how you'll handle it until it's thrust upon you.
And "handling it" isn't a singularity...it's a daily strain / reaction / decision / struggle.
The thing that most will discover is, you are far stronger than you think.
As parents of Mitchell, our eleven year old boy, the experience, whilst not quite the same as for him, was (is) just as emotional and challenging.
Initially surreal, because it's one of those "it will never happen to us" scenarios, reality sinks in very quickly. The paediatric oncology ward is an eye opening, heartbreaking and, sadly, busy place that snaps reality into focus.
How did we find it?
Mitch had a cold that lingered a little longer than normal. By week 3 we decided that a trip to the doctor for some antibiotics was required to get rid of it. After 2 courses of penicillin (Augmentum) the cold gone but, what we thought was a reaction to the penicillin, large welt / rashes appeared on his chest, stomach and back. We treated these with some antihistamine that seemed to relieve it temporarily. One odd result, that followed the rashes, were what looked like tiny blood blisters or freckles, we now know these were petechiae, a common symptom of a low platelet count.
At about the same time as the welts, Mitch started complaining of sore joints and bones and then sore ribs. After a few days off school, ongoing bone soreness and a night of having to sit up to sleep because of the pain in his ribs, we decided a trip to the doctor for a blood test was probably best.
Lisa took him to our local doctor on a Wednesday for a blood test. We had a call back from the doctor on the Thursday morning saying he'd like to see us to discuss the results (never good). I left work after completing a meeting very preoccupied (basically saying "I may be back, depending...." and that's about it) and met Lisa at the doctors with Mitch. Lisa went in to chat to the doctors while Mitch and I stayed in the waiting room. After a few minutes Lisa opened the door to the doctors room holding back (more) tears and said I should come in. Mitch was busy reading and was reasonably comfortable. (I really wasn't sure how aware he was that anything was wrong).
Sitting down next to an upset Lisa to be told by the doctor what the results indicated, I think I said "So what does that mean?".
The doctor explained the results indicated Acute Lymphoblastic Leukaemia (ALL) and that we should head directly to the Royal Children's Hospital.
Whoa! With Mitch in the waiting room we couldn't break down and didn't want to alarm him. So we left the doctors room and told him we needed to go to hospital, possibly overnight, to have some more tests done. He seemed OK with that.
Day One
Mitch and I were at the hospital by lunch time and being guided through their emergency procedures to confirm the original blood work results.
With Emily having just started a year 12 induction week at her new secondary college and Brooke finishing her last few weeks of year 8 at Parkwood, Lisa stayed home while we decided how and when we were going to handle letting them know.
After more blood tests, seeing nurses, doctors, consultants, social workers and a play therapist, we had another doctor come in to our emergency ward room and ask Mitch whether he knew what was going on. He said "No". She said "We think you have Leukaemia". Tears. I guess there really is no easy way to say it.
Peripheral lines were put in and lots of fluids administered to begin flushing the kidneys and spleen....which was enlarged in trying to cope with expelling the excess white blood cells and explains the pain in his ribs.
Lisa and the girls arrived at the hospital sometime in the mid afternoon. More tears and lots of cuddles.
By early-mid afternoon we were taken to a room in the (near new) Children's Cancer Centre - Kookaburra Ward. That was the first time it really hit me....Mitch has cancer!
The RCH team are certainly a well oiled machine. Highly organised, very friendly, compassionate and accommodating.
After a few hours of resting and waiting the girls and I headed home while Lisa stayed with Mitch for the night. A lumber puncture and bone marrow aspirate were scheduled for the next day - day 2. Deep breath....
Day Two
Day 2 started with the procedure. A sample of spinal fluid was taken, precautionary chemo injected to control any Leukaemia that may be in the spinal fluid (and Central Nervous System) and some bone marrow taken to send to pathology (and the USA) for testing. Results of this determine initial treatment.
These results confirmed Acute Lymphoblastic Leukaemia - Pre-Type B with no sign of cancer in the spinal fluid and a "favourable" result on the DNA/genetics of the Leukaemia. All good results...in the scheme of things.
The most common type of Leukaemia, that they know the most about and have the best treatment and cure rates for.
Lisa headed home to change and begin the difficult task of informing family and friends what was going on. A tough gig.
After receiving the results from the mornings procedure I met with the nursing coordinator, doctors and the oncology consultant to discuss ALL, treatment, side-effects, etc. A stressful meeting with lots of information that was hard to take in. Fortunately they also provided copious amounts of literature.
Chemotherapy started pretty much straight away, both oral and intravenous. The injected stuff doesn't really phase Mitch. The oral stuff however..... For a fussy eater with a hyper-sensitive gag reflex anything that doesn't taste like something familiar is tough to swallow...literally. Apple juice, strawberry milk, chocolate syrup - nothing can make it taste nice, especially when you know it's in there. A definite challenge ahead.
Days Three - Five
Lost of rest, lots of fluids, more chemo, more information, more doctors, time to contemplate. Lisa and I haven't really had time alone to talk, let alone come to terms with things. Good thing or bad thing?....I'm not sure. We have both adopted a no nonsense, positive, 'let's just get him better' mindset. No real thoughts of any other outcomes.
Lots of playing on the iPad, watching television, sleeping, playing Lego and visits from his sisters.
Genuine comments from Mitch like - "I'm glad it's happened to me and not my friends" break our hearts and affirm our knowledge we have raised a mature and thoughtful boy.
Day Six
As soon as Mitch was told he may be going home today he was packing his bags and getting ready.
Lisa and I were taken to be inducted into the Cancer Day Centre (out-patients) procedures. Another eye-opener. A waiting room full of kids in various stages of treatment. As Mitch is at the top end of the ALL age he will be one of the older ones in the waiting room in the coming months.
A final visit from the doctors, good-bye's to nurses and it was homeward bound.
Nearing home we passed Mitch's school and he became quieter than normal. On getting home he put himself to bed and we found him crying quietly soon afterwards. Apart from the relief of being home, he was worried about school and his friends.
Days Seven - Twenty Seven
Taking meds is a daily grind. Lisa and I had said on a couple of occasions over the years that we hoped Mitch never gets sick because taking medicine of any kind has always been a big struggle.
It is definitely a big struggle that takes hours each time.
After his hair started to fall out and start to annoy him he agreed, after many suggestions from Em, to let her shave his head. Wow, seeing the little bald head really hits home that our boy has cancer.
12.12.2012 Em's birthday was somewhat over-shadowed, which didn't really upset her but Mitch did get quite upset that she didn't want a party.
Christmas Day
A little different to past Christmas's. Given Mitch was neutrophilic over this period we decided he should probably minimise his exposure to potential bugs so I took the girls to my Mum and Dads for lunch and Lisa took them to her Mum and dads for dinner.
He certainly didn't miss out on presents although didn't quite enjoy them as much as he had in the past.
Day Twenty Eight
Lumber Puncture and Bone Marrow Aspirate today. This will top up preventative chemo in the spinal fluid and provide a marrow sample for analysis and testing of blast levels at the end of the induction phase.
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