All is well in Roebuckland at the moment. Oliver is tracking well, though we suspect that he will have a blood transfusion tomorrow as he is quite tired and ratty. We think his haemoglobin is dropping to the 'we-should-do-something-about-this' level. Other than that he is still happy and playful, and very talkative.
We went to church on Sunday, the first time since Oliver was diagnosed. We also met our life-group down at a park in Joondalup, and Karli went to mother's group today. So we are making an effort to reconnect to the world we dropped out of back in July. Whilst it would be nice to wrap ourselves up in our own little world, it was good to be around other people. Hopefully it will help us to refocus away from our little world on to some larger things in life again.
I am also in the process of trying to renew my abseiling qualifications, so I have done a day with Scripture Union (who I used to work for) out at Statham's Quarry, and am off to Mountain (Boya) Quarry on Monday with Outdoor Discoveries. It's nice to know I haven't completely lost all of my skills and knowledge, though I did ask Jamie and Ross to check my setup a few times on Friday.
I'll let Karli tell you about mother's group today. Needless to say, now that our little monkey is getting better, we are noticing that he is behind in a lot of his motor skills. It's not that this is necessarily concerning, but in the back of my mind there is still the question of 'what if he doesn't catch up'. In reality i know that he has plenty of time before we need to worry too much about that. He seems to be fairly advanced in his talking though. Well, he likes to make lots of noises.
So, again, it seems like it's just normal parenting stuff that is causing most consternation now - and I'm sure I'm not alone in that boat.
Tuesday, September 30, 2008
Wednesday, September 24, 2008
Update
We were back in hospital for Oliver's weekly treatment today. Because he is doing so well they have dropped it to one visit per week on Wednesday when all the other lymphoma patients are treated. So we now have just a midweek trip to the hospital and the opportunity to talk to other's who are being treated for the same cancer.
It's always a bit difficult to deal with the amount of time spent waiting in the hospital. We arrive early and get Oliver's blood tests done, which take about an hour to process. he needs to be weighed and measured, checked over by the doctor, then given his chemotherapy, which 2 weeks out of every 3 takes 10 minutes tops from the time we walk in to the treatment room until the time we walk out. In theory, we only need to be there for the length of time it takes to get his blood test back. In reality it took 4 hours today. We understand that there are many others who are coming in for treatment, that there are only so many nurses, and that treatment is given on a needs basis and not on a first in basis. This is fine by us, but why do we need to come in in the morning. Oliver is doing well enough that he usually ends up being close to the last to receive his treatment, so why not come in after lunch when everyone else has been done. I think next time we are going to head in at 1 and see how that goes.
That said, I have nothing but the highest praise for the medical staff at PMH that we have dealt with. Nearly all of them have been fantastic, aware of peoples desire to be as quick as possible, and always happy to help.
Oliver's 'roid rage' has disappeared as quickly as it came on, and he is becoming more energetic and playful each day, which is both exciting and exhausting. He is yet to crawl, but has figured out how to push himself backwards on his tummy, and is starting to pick up on how to bring his knees forward. Once he learns how to transfer some weight on to his legs and feet he'll be off.
It's always a bit difficult to deal with the amount of time spent waiting in the hospital. We arrive early and get Oliver's blood tests done, which take about an hour to process. he needs to be weighed and measured, checked over by the doctor, then given his chemotherapy, which 2 weeks out of every 3 takes 10 minutes tops from the time we walk in to the treatment room until the time we walk out. In theory, we only need to be there for the length of time it takes to get his blood test back. In reality it took 4 hours today. We understand that there are many others who are coming in for treatment, that there are only so many nurses, and that treatment is given on a needs basis and not on a first in basis. This is fine by us, but why do we need to come in in the morning. Oliver is doing well enough that he usually ends up being close to the last to receive his treatment, so why not come in after lunch when everyone else has been done. I think next time we are going to head in at 1 and see how that goes.
That said, I have nothing but the highest praise for the medical staff at PMH that we have dealt with. Nearly all of them have been fantastic, aware of peoples desire to be as quick as possible, and always happy to help.
Oliver's 'roid rage' has disappeared as quickly as it came on, and he is becoming more energetic and playful each day, which is both exciting and exhausting. He is yet to crawl, but has figured out how to push himself backwards on his tummy, and is starting to pick up on how to bring his knees forward. Once he learns how to transfer some weight on to his legs and feet he'll be off.
Thursday, September 18, 2008
People are Wonderful
Hello All
Today I want to thank all those who walked on behalf of Oliver last night in the Light the Night Walk for the Leukemia Foundation. I would have loved to have been there and I know if I had I would have been blown away. Thank you too to all the sponsors of those who walked. My Dad dropped in after the event which was lovely, to give us a balloon with a little light inside and the t-shirt he wore for Simon. After he left I had a little tear as I do now as I consider all those who are caring for us and all that that means for us.
To give you an update on where we are at, I now know the meaning of two commonly used phrases. 'Screaming blue murder' & I have forgotten the other one, needless to say this is Oliver on steroids. I know plenty of you who have seen our little cherub will not believe me, so perhaps I will endeavour to get video footage of this event as proof of his steroid induced disposition. This screaming comes when simply changing his nappy before a feed as experienced this evening and in order for him to stop whilst in his highchair eating, I shove the food in every time he opens his mouth, I laugh now but I tell you, keeping my patience and reminding myself that this is not my child but a monster posing as Oliver is tough at the time.
We are still getting smiles, very little laughter, he is more clingy and is currently doing a lot of nose scrunching, this I dont think is due to steroids, but he has taken after me, if any of you have noticed, I scrunch my nose when I laugh and apparently tended to do this as a kid too. At first it was when he smiled, now it is almost all the time. So often lately I wonder what my little lad is thinking.
Well tomorrow we look forward to a family day, Simon has the day off and we dont need to go into the hospital - thank God (literally)! Our hospital day has now changed from Tuesday to Wednesday as now that Oliver is weller and doesnt need to be seen twice a week, all the lymphoma patients are seen on a Wednesday. This is good for me as my mothers group is on a Tuesday so I can endeavour to get back there with Oliver from time to time, but for Simon this is a pain as he had changed all of his clients around to have Tuesdays and Fridays off. Wednesdays is also one of Simons busiest days. We are fortunate though as his clients are very understanding and accomodating. So the plan is for Simon to go back to working Fridays and just have Wednesdays off.
So we were at the hospital on Tuesday which was Olivers first day of Cycle 2, which is big chemo day, but we got home at 5:30 which was earlier than we expected. Oliver had his echocardiogram and Simon sat by his side and I sat on the chair watching my little babies heart on the screen and shed a tear (glad the room was dark) and thought of how I couldnt possibly handle anymore bad news. Cancer is one thing, but then the side effects of the chemo are something else, sometimes I catch myself panicking about what those might be for Oliver and then I realise that all I can do is pray that they will be minimal if any. However his next lot of chemo went ahead so the echocardiogram must have been ok.
I have had a few tears over the last week, another time was when Simon and I were on our own at a lovely organic cafe in Freo on Saturday having a cuppa in between our good friends Aaron & Narelle's wedding and reception and looking at photos on my mobile phone. Photos of Oliver in the hospital when he was born and thinking how did we go from this gorgeous, vulnerable little cutie to having a little boy with cancer.
A big thank you to Mum & Dad for babysitting Oliver on Saturday, we had 10 hours off, thats right 10 hours, where we thoroughly enjoyed watching our friends get married, then sitting upstairs at this cafe outside on the balcony looking down on the streets of Freo and then partying on at the reception.
Thank God for good friends! Aaron and Narelle have been great and it was so good to see them enjoying their big day and the absolute adoration they have for each other. I too was lucky to receive Narelle's bouquet and no I didnt elbow all the other girls aside to catch it, Narelle gave it to me - so it looks like Simon and I will have to get married all over again - yippee! On the subject of marriage, we are coming up for 10 years this December - I know, whoa and a friend of mine sent me a text saying that aluminium and tin are whats given to celebrate 10 years of marriage so I guess I am looking at getting a shed all for myself.
Lots of Love to you all
Karls
Today I want to thank all those who walked on behalf of Oliver last night in the Light the Night Walk for the Leukemia Foundation. I would have loved to have been there and I know if I had I would have been blown away. Thank you too to all the sponsors of those who walked. My Dad dropped in after the event which was lovely, to give us a balloon with a little light inside and the t-shirt he wore for Simon. After he left I had a little tear as I do now as I consider all those who are caring for us and all that that means for us.
To give you an update on where we are at, I now know the meaning of two commonly used phrases. 'Screaming blue murder' & I have forgotten the other one, needless to say this is Oliver on steroids. I know plenty of you who have seen our little cherub will not believe me, so perhaps I will endeavour to get video footage of this event as proof of his steroid induced disposition. This screaming comes when simply changing his nappy before a feed as experienced this evening and in order for him to stop whilst in his highchair eating, I shove the food in every time he opens his mouth, I laugh now but I tell you, keeping my patience and reminding myself that this is not my child but a monster posing as Oliver is tough at the time.
We are still getting smiles, very little laughter, he is more clingy and is currently doing a lot of nose scrunching, this I dont think is due to steroids, but he has taken after me, if any of you have noticed, I scrunch my nose when I laugh and apparently tended to do this as a kid too. At first it was when he smiled, now it is almost all the time. So often lately I wonder what my little lad is thinking.
Well tomorrow we look forward to a family day, Simon has the day off and we dont need to go into the hospital - thank God (literally)! Our hospital day has now changed from Tuesday to Wednesday as now that Oliver is weller and doesnt need to be seen twice a week, all the lymphoma patients are seen on a Wednesday. This is good for me as my mothers group is on a Tuesday so I can endeavour to get back there with Oliver from time to time, but for Simon this is a pain as he had changed all of his clients around to have Tuesdays and Fridays off. Wednesdays is also one of Simons busiest days. We are fortunate though as his clients are very understanding and accomodating. So the plan is for Simon to go back to working Fridays and just have Wednesdays off.
So we were at the hospital on Tuesday which was Olivers first day of Cycle 2, which is big chemo day, but we got home at 5:30 which was earlier than we expected. Oliver had his echocardiogram and Simon sat by his side and I sat on the chair watching my little babies heart on the screen and shed a tear (glad the room was dark) and thought of how I couldnt possibly handle anymore bad news. Cancer is one thing, but then the side effects of the chemo are something else, sometimes I catch myself panicking about what those might be for Oliver and then I realise that all I can do is pray that they will be minimal if any. However his next lot of chemo went ahead so the echocardiogram must have been ok.
I have had a few tears over the last week, another time was when Simon and I were on our own at a lovely organic cafe in Freo on Saturday having a cuppa in between our good friends Aaron & Narelle's wedding and reception and looking at photos on my mobile phone. Photos of Oliver in the hospital when he was born and thinking how did we go from this gorgeous, vulnerable little cutie to having a little boy with cancer.
A big thank you to Mum & Dad for babysitting Oliver on Saturday, we had 10 hours off, thats right 10 hours, where we thoroughly enjoyed watching our friends get married, then sitting upstairs at this cafe outside on the balcony looking down on the streets of Freo and then partying on at the reception.
Thank God for good friends! Aaron and Narelle have been great and it was so good to see them enjoying their big day and the absolute adoration they have for each other. I too was lucky to receive Narelle's bouquet and no I didnt elbow all the other girls aside to catch it, Narelle gave it to me - so it looks like Simon and I will have to get married all over again - yippee! On the subject of marriage, we are coming up for 10 years this December - I know, whoa and a friend of mine sent me a text saying that aluminium and tin are whats given to celebrate 10 years of marriage so I guess I am looking at getting a shed all for myself.
Lots of Love to you all
Karls
Friday, September 12, 2008
Testing Times
We were back in PMH today. Oliver had a full blood count done, requiring another finger prick and small vial of blood to be taken. Then we had an echo-cardiogram - a heart ultrasound. Unfortunately, for whatever reason, the technicians didn't know Oliver was so young, and as he was required to lay still, he did the small baby thing and cried and squirmed. As a consequence, we will have another done on Tuesday before he starts his new cycle of chemo.
Oliver requires regular tests not only to see how the cancer is responding to his chemotherapy, but also to see how the rest of his body is responding to it as well. The doxorubicin that causes his mucusitis can also affect his heart muscle, with infants being especially at risk. As I am wont to do, I recently raided amazon.com and brought a few books. One of them is "Supportive Care of Children with Cancer" - Current Therapy and Guidelines from the Children's Oncology Group. This is the group who are controlling the study Oliver is involved in. The book is about all of the supportive care measures that must go hand in hand with children's therapy in order to "sustain patients through their therapeutic ordeal and allow each patient to achieve maximum quality of life". It has given me an insight into why Oliver is having certain tests done, or why he has certain observations taken, and why we are asked certain questions. It has also alerted me to be ing more aware of his behaviours and how these may be an indicator of something else. It is at once empowering and overwhelming. it seems that the doxorubicin can be toxic both at certain dosage levels, that Oliver shouldn't need, but also cumulatively, which may become more of a problem as Oliver nears the end of his treatment and the levels of drugs he has received begin to add up. There may be other long term side effects that we will have to deal with further down the track.
Karli had some blood tests done today as well. They weren't exactly painless, and it was a stark reminder of what our little boy has been through during his stay in hospital, and will continue to go through as he continues his winning fight against cancer.
I meant to say something on Wednesday, but thankyou to all those who choose to avoid us when they have colds and other illnesses. A number of my clients who are a little under the weather have put their training sessions to the side in order to avoid taking the chance of passing anything on to me, and then possibly on to my little boy. This may not seem like much, but Oliver's immunity is such that it doesn't take much for him to catch something. Unfortunately, that can start a serious downward spiral.
On a similar and much sadder note, I was told today that one of the children in the ward passed away recently. It's hard to consider that this is happening in the rooms around you, especially as your own child only seems to get healthier. Our prayers and thoughts are with the family.
Oliver requires regular tests not only to see how the cancer is responding to his chemotherapy, but also to see how the rest of his body is responding to it as well. The doxorubicin that causes his mucusitis can also affect his heart muscle, with infants being especially at risk. As I am wont to do, I recently raided amazon.com and brought a few books. One of them is "Supportive Care of Children with Cancer" - Current Therapy and Guidelines from the Children's Oncology Group. This is the group who are controlling the study Oliver is involved in. The book is about all of the supportive care measures that must go hand in hand with children's therapy in order to "sustain patients through their therapeutic ordeal and allow each patient to achieve maximum quality of life". It has given me an insight into why Oliver is having certain tests done, or why he has certain observations taken, and why we are asked certain questions. It has also alerted me to be ing more aware of his behaviours and how these may be an indicator of something else. It is at once empowering and overwhelming. it seems that the doxorubicin can be toxic both at certain dosage levels, that Oliver shouldn't need, but also cumulatively, which may become more of a problem as Oliver nears the end of his treatment and the levels of drugs he has received begin to add up. There may be other long term side effects that we will have to deal with further down the track.
Karli had some blood tests done today as well. They weren't exactly painless, and it was a stark reminder of what our little boy has been through during his stay in hospital, and will continue to go through as he continues his winning fight against cancer.
I meant to say something on Wednesday, but thankyou to all those who choose to avoid us when they have colds and other illnesses. A number of my clients who are a little under the weather have put their training sessions to the side in order to avoid taking the chance of passing anything on to me, and then possibly on to my little boy. This may not seem like much, but Oliver's immunity is such that it doesn't take much for him to catch something. Unfortunately, that can start a serious downward spiral.
On a similar and much sadder note, I was told today that one of the children in the ward passed away recently. It's hard to consider that this is happening in the rooms around you, especially as your own child only seems to get healthier. Our prayers and thoughts are with the family.
Wednesday, September 10, 2008
So Much Endured, So Much Needed
Oliver turned 10 months old yesterday. It's hard to believe that someone so young could have endured so much so early in life. It's harder to consider that there are others who are younger who have endured more. I have had the privilege to meet some of the most amazing children and parents over the past few months.
In some ways I am embarrassed to say that my son has already beaten his cancer and is just going through the motions to make sure it's completely defeated. Maybe I am being a little too optimistic, but as far as I know that is the truth of the matter. Whilst I know that he may relapse, and that he will have a greater than average chance of developing a new cancer, for now he is a healthy normal little boy.
Next Wednesday is the Leukemia Foundation's "Light the Night" (http://www.lightthenight.org.au/). Oliver's Nanna has a team called the Ollywalkers. They will be a group amongst others who will walk with different coloured glowing balloons to signify a different journey -
How sad it is that fundraising is required by hospitals and other foundations and groups to provide the care, support, vision and research to fight sickness and disease. How amazing that there are so many individuals and businesses who give so generously because they know how important it is. May I encourage you to give as you can to whichever cause most touches your heart. There are many organisations that are in desperate need of funds - I'm sure you can find something to support.
Having just endured the somewhat farcical WA election I am sure there must be something that can be done to put pressure on our politicians to direct funds to areas that will best serve our society. I'm sure it's not easy to do, but I'm sure it's not that difficult to direct funds towards improving the quality of life of everyone in our country.
In some ways I am embarrassed to say that my son has already beaten his cancer and is just going through the motions to make sure it's completely defeated. Maybe I am being a little too optimistic, but as far as I know that is the truth of the matter. Whilst I know that he may relapse, and that he will have a greater than average chance of developing a new cancer, for now he is a healthy normal little boy.
Next Wednesday is the Leukemia Foundation's "Light the Night" (http://www.lightthenight.org.au/). Oliver's Nanna has a team called the Ollywalkers. They will be a group amongst others who will walk with different coloured glowing balloons to signify a different journey -
- Light a gold balloon to REMEMBER a loved one lost.
- Light a white balloon to CELEBRATE being a blood cancer survivor.
- Light a blue balloon to GIVE HOPE and show your support.
How sad it is that fundraising is required by hospitals and other foundations and groups to provide the care, support, vision and research to fight sickness and disease. How amazing that there are so many individuals and businesses who give so generously because they know how important it is. May I encourage you to give as you can to whichever cause most touches your heart. There are many organisations that are in desperate need of funds - I'm sure you can find something to support.
Having just endured the somewhat farcical WA election I am sure there must be something that can be done to put pressure on our politicians to direct funds to areas that will best serve our society. I'm sure it's not easy to do, but I'm sure it's not that difficult to direct funds towards improving the quality of life of everyone in our country.
Tuesday, September 9, 2008
End of Cycle 1
Oliver had his last lot of chemo for this cycle today. One down, 14 more to go. We are thankful that he hasn't responded to the treatment as badly as he has previously. Hopefully he won't have any nasty side effects any more and we will be able to go about life as normal as possible with a regular little boy.
He is able to spend a lot more time on his tummy now, and has started to move himself around to grab objects that are to the side of him. It's slow, but I don't think it will be long before he gets the hang of it. He doesn't seem to have the strength to get his legs under himself at the moment, but again I don't think it will take him long to figure it all out. He will soon be impressing us with his daily new tricks and keeping us on our toes.
He is able to spend a lot more time on his tummy now, and has started to move himself around to grab objects that are to the side of him. It's slow, but I don't think it will be long before he gets the hang of it. He doesn't seem to have the strength to get his legs under himself at the moment, but again I don't think it will take him long to figure it all out. He will soon be impressing us with his daily new tricks and keeping us on our toes.
Monday, September 8, 2008
Happy & Healthy
Yesterday was my first Father's Day. It was nice to be able to thank our dad's for their support over the past few months. We had breakfast with my dad, and then lunch with Karli's dad, and just lazed in the sun or played with Oliver. What more could you want from a Father's Day? Thankyou to all those who wished me a happy Father's Day.
Oliver continues to do well. He was a little bit ratty yesterday, and has been a little tired today, but is still laughing and playing. He also seems a little pale. We suspect that his haemoglobin and platelets are down, and that his neutrophils may also be low. We head back in to the hospital tomorrow for another round of chemo and more blood tests, so we will know what is going on then. For now, here is the little boy we have at the moment. If this last cycle is anything to go by, he should go from strength to strength.
Oliver continues to do well. He was a little bit ratty yesterday, and has been a little tired today, but is still laughing and playing. He also seems a little pale. We suspect that his haemoglobin and platelets are down, and that his neutrophils may also be low. We head back in to the hospital tomorrow for another round of chemo and more blood tests, so we will know what is going on then. For now, here is the little boy we have at the moment. If this last cycle is anything to go by, he should go from strength to strength.
Friday, September 5, 2008
We haven't posted anything for the last few days because things are going well. We started this blog to help keep people up to date with what was happening for Oliver with his cancer. At the moment, there is no news.
We have been waiting for his mucusitis to worsen over the past few days, but it hasn't done much at all. Our little boy is happy and playful, just a regular little 10 month old boy. We have only made one trip in to the hospital lately, and that was because he pulled his nasogastric tube out while he was sleeping last night. If not for that, we wouldn't have even gone in today since they told us not to bother on Tuesday.
What can I say? Things are fine. I feel kind of sheepish talking about all that has happened because to look at him, you would never believe he had been so sick, or even that he was on weekly chemotherapy. He is truly a remarkable little boy.
We have been waiting for his mucusitis to worsen over the past few days, but it hasn't done much at all. Our little boy is happy and playful, just a regular little 10 month old boy. We have only made one trip in to the hospital lately, and that was because he pulled his nasogastric tube out while he was sleeping last night. If not for that, we wouldn't have even gone in today since they told us not to bother on Tuesday.
What can I say? Things are fine. I feel kind of sheepish talking about all that has happened because to look at him, you would never believe he had been so sick, or even that he was on weekly chemotherapy. He is truly a remarkable little boy.
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