No doubt I owe you all an apology for my inability to blog lately - we have all taken turns in being sick, when we haven't all been sick at the same time, and our energies have been focused on the simple things - getting food in, keeping it down, breathing through our clogged up mucky noses and trying to fit some sleep in whenever we can.
Oscar's bloods have remained consistently high but that is no surprise given said illnesses. This week he also had a flu injection and even Dr Margaret was away sick. Sydney is full of germs it seems lately and we are definately not alone in our germ frenzy and we are lucky to be in a position where germs are simply something we experience like everyone else as apposed to them being a threat to Oscar's life. So, in some strange way it feels good just to be exhausted and sick from something that we know will run its course (despite all the endless whinging). One thing is for sure if you can whinge about it it really can't be that bad! (Although this does not take away from the fact that the whinging is getting to be very annoying). The lack of sleep is a walk in the park compared to the daylight hours with toddlers who are discontent with everything and generally iritable. And even more annoying, they are still adorable and treasured even when they are out of sorts and driving you crazy!
Nothing much else to report. The hospital car park is being renovated which is a total drag and adds another dimension to our visits that we could live without but we are glad we only go fortnightly. We have been surrounded by such wonderful friends with gifts of incredible generosity and thoughtfulness and Auden has been unconditionally embraced by his Pre School friends and all the mums who help us out. He went home with his best friend and had a wonderful play date whilst Oscar and I were at hospital doing what we do.
We did have a call suggesting that Oscar go ahead for his circumcision last week but he was too sick to go under anaesthetic so he is back on the wait list for now. Waiting is something we are very good at, so definately no rush there.
In amongst all this blur my thyroid was very low and I am waiting for the medication to kick in so that I don't have to do that thing in my head all day where I tell myself to push through the tiredness and fog and keep pushing. Soon I have no doubt a blissful calm will descend upon me and I will become the confident, powerful mummy who knows what's going on around her (although I am not sure my thyroid medication is quite that good)....but you get the gist.
All is well. Thanks for checking in on us and a special thank you to everyone for your compassion and friendship these last few weeks. In amongst all this chaos I have been very spoilt and feel overwhelmed with your generosity. x
Thursday, March 29, 2012
Thursday, March 1, 2012
Clinic Visit Wednesday 29th Feb 2012
Oscar's bloods have been high for a month now so we are increasing his methotrexate dose going forward. Nothing to be concerned about, just a 'normal' part of the journey. All is well.
Going to clinic has changed since Oscar has been going to Pre School as he is so tired he doesn't want to go and puts up some resistance. Plus, we have to drop Auden at Pre School before heading to hospital and often get stuck in horrendous traffic on Pennant Hills Rd. The combination can be intense and usually I distract Oscar and myself by affirming all the positives of our visit: "Margaret will be there". "We will get you a smiley face biscuit." etc for Oscar and for me, "It will be quick and easy today etc." This week my brain was too confused and overwhelmed to get these simple sentences out of my mouth. It was like I had drifted outside my own body and I could see this other me (outer body Cindy) floating above me saying, "I can't be bothered. I don't want to do it. etc". Meanwhile the physical Cindy was telling the outer body Cindy, "Oh shut up, stop complaining, grow up, this is a walk in the park compared to so many other things you could have to be doing today. Get on with it." Still, neither Cindy could get past these thoughts that seem to have taken on their own life and with Oscar screaming, "I want to go home. I don't want the lady to hurt me", I had to surrender to my own inability to get it together this one time and turn some nice music on and just ride it out.
Of course, once we got to hospital and found the ever illusive parking spot in the rain and got ourselves going we switched into our hospital personalities and found some sort of ease in the routines we are so used to. Oscar ran around the poles, weaving in and out to the front door, we greeted Donna with enthusiasm, signed the necessary paperwork, found the food trolley with the biscuits Oscar likes, said hello to Margaret (who has been away for our last two visits and who is such a comfort and joy), and so forth. Oscar changed his entire way of approaching his blood test, wanting to sit on the chair by himself and arranging things the way he wanted them. Soon, it was all done and time to go home. Margaret always looks after us and it was nice to have a shorter visit this week. When Margaret is there we find something incredibly safe and easy about clinic visits that is a real treasure to us and very deeply personal to Oscar's journey.
Not surprisingly, given my mental state, when we got back to the car park I couldn't remember where I had parked the car. So I headed up the ramp with Oscar and thought I saw a car like mine and headed towards it but Oscar said, "Where are you going mummy?" To which I replied, "To find our car". "But mummy its up there, we have to go up there." "Where?" I ask and Oscar says, "I show you".
He led the way straight to our car two more floors up the car park and then said, "4 ramps mummy, here it is. Silly mummy." Bless him. I had to laugh and said, "Maybe you should be driving too Oscar seeing you are doing better than mummy today." Oscar then said, "Oh, no, mummy I'm just a little boy not a big boy".
He sure know how to lighten one's mood. Having said that I spent the trip home in a different mental battle, thinking about one of the mums I ran into who we spent a lot of time with on the ward. It struck me how odd it is that I know so much about her life, how she had to sell her house, move to be near the hospital, leave her infant daughter with her mum and live in hospital for twelve months with her son and all the other little details that made up a microscopic part of her journey. And yet, here I run into her to find out her son has relapsed and she is gearing up for another long stint of treatment and all the associated upheaval for her whole family. How much we know about each others journey and yet how little we can protect one another from the personal details that are uniquely our own. My heart goes out to her and it is another reminder of how precious life is and how we have to grab every moment.
There's nothing like a trip to Oncology Clinic to rearrange your head space, give you perspective and a good kick up the pants for any weakness in thinking that is a luxury of those whose lives are running relatively easily. When in the thick of trauma it is so easy to have the self discipline to only give energy to the things that are real and matter and when life starts to even out a bit we can slip into unhelpful resistance.
If we learn anything from trauma it is this ability to focus on what matters most - acceptance of our own humanity and love, love, love. Beyond that the brain needs to just get on with it. Life is short.
Take care beautiful people. Be kind to yourselves and one another. x
Going to clinic has changed since Oscar has been going to Pre School as he is so tired he doesn't want to go and puts up some resistance. Plus, we have to drop Auden at Pre School before heading to hospital and often get stuck in horrendous traffic on Pennant Hills Rd. The combination can be intense and usually I distract Oscar and myself by affirming all the positives of our visit: "Margaret will be there". "We will get you a smiley face biscuit." etc for Oscar and for me, "It will be quick and easy today etc." This week my brain was too confused and overwhelmed to get these simple sentences out of my mouth. It was like I had drifted outside my own body and I could see this other me (outer body Cindy) floating above me saying, "I can't be bothered. I don't want to do it. etc". Meanwhile the physical Cindy was telling the outer body Cindy, "Oh shut up, stop complaining, grow up, this is a walk in the park compared to so many other things you could have to be doing today. Get on with it." Still, neither Cindy could get past these thoughts that seem to have taken on their own life and with Oscar screaming, "I want to go home. I don't want the lady to hurt me", I had to surrender to my own inability to get it together this one time and turn some nice music on and just ride it out.
Of course, once we got to hospital and found the ever illusive parking spot in the rain and got ourselves going we switched into our hospital personalities and found some sort of ease in the routines we are so used to. Oscar ran around the poles, weaving in and out to the front door, we greeted Donna with enthusiasm, signed the necessary paperwork, found the food trolley with the biscuits Oscar likes, said hello to Margaret (who has been away for our last two visits and who is such a comfort and joy), and so forth. Oscar changed his entire way of approaching his blood test, wanting to sit on the chair by himself and arranging things the way he wanted them. Soon, it was all done and time to go home. Margaret always looks after us and it was nice to have a shorter visit this week. When Margaret is there we find something incredibly safe and easy about clinic visits that is a real treasure to us and very deeply personal to Oscar's journey.
Not surprisingly, given my mental state, when we got back to the car park I couldn't remember where I had parked the car. So I headed up the ramp with Oscar and thought I saw a car like mine and headed towards it but Oscar said, "Where are you going mummy?" To which I replied, "To find our car". "But mummy its up there, we have to go up there." "Where?" I ask and Oscar says, "I show you".
He led the way straight to our car two more floors up the car park and then said, "4 ramps mummy, here it is. Silly mummy." Bless him. I had to laugh and said, "Maybe you should be driving too Oscar seeing you are doing better than mummy today." Oscar then said, "Oh, no, mummy I'm just a little boy not a big boy".
He sure know how to lighten one's mood. Having said that I spent the trip home in a different mental battle, thinking about one of the mums I ran into who we spent a lot of time with on the ward. It struck me how odd it is that I know so much about her life, how she had to sell her house, move to be near the hospital, leave her infant daughter with her mum and live in hospital for twelve months with her son and all the other little details that made up a microscopic part of her journey. And yet, here I run into her to find out her son has relapsed and she is gearing up for another long stint of treatment and all the associated upheaval for her whole family. How much we know about each others journey and yet how little we can protect one another from the personal details that are uniquely our own. My heart goes out to her and it is another reminder of how precious life is and how we have to grab every moment.
There's nothing like a trip to Oncology Clinic to rearrange your head space, give you perspective and a good kick up the pants for any weakness in thinking that is a luxury of those whose lives are running relatively easily. When in the thick of trauma it is so easy to have the self discipline to only give energy to the things that are real and matter and when life starts to even out a bit we can slip into unhelpful resistance.
If we learn anything from trauma it is this ability to focus on what matters most - acceptance of our own humanity and love, love, love. Beyond that the brain needs to just get on with it. Life is short.
Take care beautiful people. Be kind to yourselves and one another. x
Thursday, February 2, 2012
Clinic Check up Feb 1st 2012
Oscar's bloods results were spot on this week (YAY):
Hb: 120
WCC: 2.8
Neut: 1.6
Plts: 190
I had a bit of a scare at clinic as Dr Mary, our head Oncologist, whom we've only ever seen when Oscar was diagnosed or in hospital in a critical condition, called me into her rooms. My heart dropped and I thought I was going to vomit but she must have noticed the look on my face and reassured me instantly that there was nothing wrong, she was just filling in for Dr Margaret, who was away. Phew. I felt a bit of a wreck after that and probably didn't ask enough questions when Mary suggested that Oscar could go ahead with his circumcision operation before finishing treatment. She said the risk of infection from the operation had to be weighed against the risk of recurring urine infections.
Oh dear, two different opinions from the two Dr's I most respect and another lot of phone calls to make to the Paediatric Urologist to put Oscar's name back on the wait list and reorder all the necessary tests. Ho hum, if only the departments talked to one another. Still, it would get it over and done with so that next year, when he is free of chemo, he is free of the hospital the majority of the time and able to just 'be'.
Whatever will be will be.
In the mean time Oscar embraced Pre School with enthusiasm - jumped in the sandpit and said "Bye Mummy" and when I arrived to pick him up three hours later the teacher said to me - he is in charge. To which I replied, "Tell me about it". Auden is having a bit more trouble settling in because he's Auden and because he has changed days and is missing his best friend and confused by having Oscar joining in with his friends. It will be an adjustment but it is a wonderful thing for them to share together.
This is the best photo I could get - they were too eager to get to Pre School to be bothered with photo's - and they both seemed to have a great day. The staff have been absolutely magic with them!
So, Oscar's journey continues and he embraces it with such clarity of purpose, enthusiasm and passion while Auden takes it all in, thinks about it all and shares his ponderings with Oscar (whose reply is mostly, "oh yeah, but....).
Life is good. May you and your loved ones have the time to share your ponderings, care for one another, laugh with enthusiasm, keep wondering about the next adventure, find passion in your purpose and most of all show each other how much love there is in your hearts. Love is all there is.
Thanks for checking in on us and take care beautiful people. x
Hb: 120
WCC: 2.8
Neut: 1.6
Plts: 190
I had a bit of a scare at clinic as Dr Mary, our head Oncologist, whom we've only ever seen when Oscar was diagnosed or in hospital in a critical condition, called me into her rooms. My heart dropped and I thought I was going to vomit but she must have noticed the look on my face and reassured me instantly that there was nothing wrong, she was just filling in for Dr Margaret, who was away. Phew. I felt a bit of a wreck after that and probably didn't ask enough questions when Mary suggested that Oscar could go ahead with his circumcision operation before finishing treatment. She said the risk of infection from the operation had to be weighed against the risk of recurring urine infections.
Oh dear, two different opinions from the two Dr's I most respect and another lot of phone calls to make to the Paediatric Urologist to put Oscar's name back on the wait list and reorder all the necessary tests. Ho hum, if only the departments talked to one another. Still, it would get it over and done with so that next year, when he is free of chemo, he is free of the hospital the majority of the time and able to just 'be'.
Whatever will be will be.
In the mean time Oscar embraced Pre School with enthusiasm - jumped in the sandpit and said "Bye Mummy" and when I arrived to pick him up three hours later the teacher said to me - he is in charge. To which I replied, "Tell me about it". Auden is having a bit more trouble settling in because he's Auden and because he has changed days and is missing his best friend and confused by having Oscar joining in with his friends. It will be an adjustment but it is a wonderful thing for them to share together.
So, Oscar's journey continues and he embraces it with such clarity of purpose, enthusiasm and passion while Auden takes it all in, thinks about it all and shares his ponderings with Oscar (whose reply is mostly, "oh yeah, but....).
Life is good. May you and your loved ones have the time to share your ponderings, care for one another, laugh with enthusiasm, keep wondering about the next adventure, find passion in your purpose and most of all show each other how much love there is in your hearts. Love is all there is.
Thanks for checking in on us and take care beautiful people. x
Wednesday, January 18, 2012
19th Jan 2012 Clinic Visit
We just arrived home from Oscar's visit and I have a quick minute to update you. Bloods have improved:
Hb: 12
WCC: 3.0 (target for maintenance is between 2 - 3)
Neut: 1.6
Plts: 229
Dr Margaret was happy, as always, to see us and does not want Oscar having any surgery until after he has completed chemo and recovered from it (a minimum of 2 months after completion). There is too much risk of infection and with his suppressed immune system they would only allow surgery if it was critical.
It has also been explained to me many times that it takes about 6 months for recovery from chemo - for the taste buds to return to normal, the bloods to adjust etc. So, my gut feeling is we should wait until 6 months after he finishes chemo in June this year, have a chemo-free, care-free Xmas and then do it early next year. That's the thought I will be sending out to the universe so feel free to join me. In the mean time, I need to go back to the Paediatric Urologist to tell him and get the other tests done to check how his kidneys are coping.
All in all it was a good visit. We are changing back to Wednesday visits which means Auden will be in Pre School. Dr Margaret was sad and said I absolutely have to bring Auden sometimes as she loves seeing him growing up. Bless her.
Thanks again for checking in on us and I hope you are all travelling well on your own journeys. Take care of each other - love heals - and take care of yourselves too. x
Hb: 12
WCC: 3.0 (target for maintenance is between 2 - 3)
Neut: 1.6
Plts: 229
Dr Margaret was happy, as always, to see us and does not want Oscar having any surgery until after he has completed chemo and recovered from it (a minimum of 2 months after completion). There is too much risk of infection and with his suppressed immune system they would only allow surgery if it was critical.
It has also been explained to me many times that it takes about 6 months for recovery from chemo - for the taste buds to return to normal, the bloods to adjust etc. So, my gut feeling is we should wait until 6 months after he finishes chemo in June this year, have a chemo-free, care-free Xmas and then do it early next year. That's the thought I will be sending out to the universe so feel free to join me. In the mean time, I need to go back to the Paediatric Urologist to tell him and get the other tests done to check how his kidneys are coping.
All in all it was a good visit. We are changing back to Wednesday visits which means Auden will be in Pre School. Dr Margaret was sad and said I absolutely have to bring Auden sometimes as she loves seeing him growing up. Bless her.
Thanks again for checking in on us and I hope you are all travelling well on your own journeys. Take care of each other - love heals - and take care of yourselves too. x
Sunday, January 15, 2012
5th Jan 2012 Clinic Visit
We visited clinic on 5th January and Oscar's bloods had gone up. For those interested in the numbers:
Hb: 129
WCC: 4.4 (target on maintenance is between 2 and 3)
Neut: 2.5
Plts: 170
We aren't sure why they went up but have increased his chemo to get them back down towards the desired target. All is well.
We also visited the Paediatric Urologist on 12th Jan, who confirmed that Oscar will need to have a circumcision and a nuclear test to check how his kidneys are doing. Recent studies show that ongoing antibiotic treatment only reduces the incident of urine infection by 6%, whereas circumcision is almost always successful at eliminating them. In the past we did not want to go down this road and perhaps that wrong decision has contributed to his journey so far so we are going to move forward and get it done. There is a 1 in 20 chance that he will need a second operation because his penis may open as a result of the circumcision and this would mean he would wee over the toilet at a funny angle so they would operate to remedy that if it occurred, which we doubt. Finally, he may need another operation down the track, once we have identified if his reflux has fixed itself. If the valve in his urinary system is still not healed they may need to do a further, more invasive surgery to remedy that - again, we will cross that bridge if it presents itself along the pathway that is his journey.
It is an exciting year for Oscar as he starts Pre-School and he will also finish his chemo treatment in about June or July - both important milestones for him. He is certainly growing up by the minute and making a mark for himself in all that he says, does and shares with all of us. Auden is excited that his brother is going to be at Pre-School with him and can't wait to get back there. All in all 2012 is likely to be a fantastic journey for both of them.
I took the boys away for a holiday at a friends house and only just arrived back yesterday and it was a wonderful gift of kindness and generosity of spirit that really helped me and the boys had so much fun playing with the big boys, staying up very late and generally enjoying the freedom of new adventures. Thank you to the special person who made it happen and gave me a feeling of safety and sanctuary when I needed it.
Life is good. May 2012 bring you the healing, love, light and the listening, respectful heart of fellow travellers on this journey of life. We are all human, full of frailty, faults and fears as well as strength, courage and compassion - may we accept this truth, respect our differences, listen to each others stories, hold each others hand and unite in the knowledge that we are all one.
Thanks for checking in on us. x
Hb: 129
WCC: 4.4 (target on maintenance is between 2 and 3)
Neut: 2.5
Plts: 170
We aren't sure why they went up but have increased his chemo to get them back down towards the desired target. All is well.
We also visited the Paediatric Urologist on 12th Jan, who confirmed that Oscar will need to have a circumcision and a nuclear test to check how his kidneys are doing. Recent studies show that ongoing antibiotic treatment only reduces the incident of urine infection by 6%, whereas circumcision is almost always successful at eliminating them. In the past we did not want to go down this road and perhaps that wrong decision has contributed to his journey so far so we are going to move forward and get it done. There is a 1 in 20 chance that he will need a second operation because his penis may open as a result of the circumcision and this would mean he would wee over the toilet at a funny angle so they would operate to remedy that if it occurred, which we doubt. Finally, he may need another operation down the track, once we have identified if his reflux has fixed itself. If the valve in his urinary system is still not healed they may need to do a further, more invasive surgery to remedy that - again, we will cross that bridge if it presents itself along the pathway that is his journey.
It is an exciting year for Oscar as he starts Pre-School and he will also finish his chemo treatment in about June or July - both important milestones for him. He is certainly growing up by the minute and making a mark for himself in all that he says, does and shares with all of us. Auden is excited that his brother is going to be at Pre-School with him and can't wait to get back there. All in all 2012 is likely to be a fantastic journey for both of them.
I took the boys away for a holiday at a friends house and only just arrived back yesterday and it was a wonderful gift of kindness and generosity of spirit that really helped me and the boys had so much fun playing with the big boys, staying up very late and generally enjoying the freedom of new adventures. Thank you to the special person who made it happen and gave me a feeling of safety and sanctuary when I needed it.
Life is good. May 2012 bring you the healing, love, light and the listening, respectful heart of fellow travellers on this journey of life. We are all human, full of frailty, faults and fears as well as strength, courage and compassion - may we accept this truth, respect our differences, listen to each others stories, hold each others hand and unite in the knowledge that we are all one.
Thanks for checking in on us. x
Friday, December 23, 2011
Christmas Clinic Visit & Christmas Joy
Our clinic visit on Thursday went well. I had baked some ginger bread cookies in the shape of stars and angels and my friend Mel kindly helped me ice them. I took them in for all the staff who have done so much for us and we also gave Dr Margaret and Donna a special christmas cake each. Such small offerings for such amazing and caring people who give Auden and Oscar so much love in amongst the chaos and the care - how can anyone adequately say thank you. It was such a wonderful thing to be able to say thank you, however small, and very emotional as well.
If any time of the year is special for children its Christmas and it was so hard walking past the Camperdown Ward, thinking of the children and their families and knowing something of how they may be feeling. Last year I remember helping put up the Christmas decorations with the nurses on the ward and it felt strange walking past them this year.
So we were glad to have our visit over, to have given back in some small way to the people who spend their every day giving so much of themselves to the care of sick children and to know that we are so blessed to be spending Christmas at home with our boys and with Oscar doing so well.
I have never been this excited about Christmas, except maybe as a little kid. I just can't wait. I love every minute of it. I took Auden to the shops this morning and there was a queue a mile long for Bakers Delight and just rushing chaos and queues everywhere and all I could think was - I love the energy, enthusiasm and pure indulgence that everyone throws at Christmas. I just love, love, love it after having spent a lot of time around the hospital where there is inevitably so much stagnation.
I felt so joyful I could burst and then when I got home the heavens opened up and Oscar did his rain dance and eventually convinced Auden to join him. Life doesn't get any better than this and tomorrow most of Pete's family and my family are coming to our house for a wonderful celebration. I don't know how we are so blessed but I am just bursting to share it with everyone.
Wednesday, December 14, 2011
Oscar and Auden Photo Published
In the latest edition of 'The Chemo Chronicle', Auden and Oscar appear in photo's of the Oncology Clinic play room. The photos were taken several months ago and I had forgotten all about them so it was with great excitement that I stumbled across them as I was reading the latest edition.
If you have a copy take a look for yourself on page 16 - under the title, 'What's been happening in the Clinic', the top left hand photo is of both Auden and Oscar and then in the middle of the bottom row is a photo just of Oscar. I scanned the page and tried to attach it here but I can only put jpeg images here, not PDF files - so, alas, I can't share their moment of fame with you.
There were a lot of great articles and some friendly faces throughout this edition and it was great to catch up on how some of our fellow families are doing. I particularly want to shout out to Katherine Machon, who appears on page 15 for the great work she is doing in giving back to the Oncology staff through the Oncology Parent Advisory Council. It was so great to see pictures of you and Aiden (he looks so great with all that hair!!). It made my heart sing to know you are going well. I carried around a ginger bread man for some months hoping to run into you as I know that Aiden always loved them. It was a real privilege to share the journey with you and I really hope we run into each other some time soon. Oscar would also love to see Aiden.
Meanwhile, we are getting into the joy of Christmas and revelling in all of it - even the shopping. Last year Oscar was at the hardest phase of his treatment and we had to head in on boxing day to the Camperdown Ward for chemo injections and so forth - so it is a sublime treat to be in a better place this year and all I can say to all those shoppers getting stressed out is - enjoy every minute of delicious time contemplating the magic of giving to the ones you love and spending time with them over the holiday season.
Take care beautiful people. x
If you have a copy take a look for yourself on page 16 - under the title, 'What's been happening in the Clinic', the top left hand photo is of both Auden and Oscar and then in the middle of the bottom row is a photo just of Oscar. I scanned the page and tried to attach it here but I can only put jpeg images here, not PDF files - so, alas, I can't share their moment of fame with you.
There were a lot of great articles and some friendly faces throughout this edition and it was great to catch up on how some of our fellow families are doing. I particularly want to shout out to Katherine Machon, who appears on page 15 for the great work she is doing in giving back to the Oncology staff through the Oncology Parent Advisory Council. It was so great to see pictures of you and Aiden (he looks so great with all that hair!!). It made my heart sing to know you are going well. I carried around a ginger bread man for some months hoping to run into you as I know that Aiden always loved them. It was a real privilege to share the journey with you and I really hope we run into each other some time soon. Oscar would also love to see Aiden.
Meanwhile, we are getting into the joy of Christmas and revelling in all of it - even the shopping. Last year Oscar was at the hardest phase of his treatment and we had to head in on boxing day to the Camperdown Ward for chemo injections and so forth - so it is a sublime treat to be in a better place this year and all I can say to all those shoppers getting stressed out is - enjoy every minute of delicious time contemplating the magic of giving to the ones you love and spending time with them over the holiday season.
Take care beautiful people. x
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