Sorry for the lack of updates lately but we have had a crazy busy time with hospital stays, Oscar's 2nd birthday, more hospital stays and Auden's 3rd birthday. We are just starting to get back to a slightly more normal life and I finally have a minute to explain where we are up to on this journey.
Oscar has completed the fourth and final methotrexate 24 hour drip (hooray!) and once again got mucusitis and had to go back in to hospital to be put on a drip and given pain medication. He has recovered very quickly though and yesterday in clinic his blood results were so good that they are going to move his bone marrow aspiration forward to tomorrow (he was booked for Monday). This is good news in that he has recovered so well and we can keep moving forward but it does mean we miss out on our two week break we had been looking forward to. Still, the quicker we start the quicker we finish.
So Oscar is fasting from midnight tonight and we are back in clinic tomorrow for the bone marrow aspiration. Monday we go back to clinic again and start the next phase of treatment which we have been advised is the toughest phase for most children. Its a complicated mix of steroids and many different chemo treatments - similar to the beginning phase. We will be monitoring Oscar's blood pressure in clinic as he may get high blood pressure again from the steroid (it is a different steroid this time but apparently stronger). Basically, he will be bombarded by very strong drugs in a specific protocol and due to the fact that his body has been through so much already it can be a very tough couple of months. There are no scheduled hospital stays but most children have at least one or two trips to emergency and stays during this time.
That's what they tell us but we feel positive Oscar will manage to get through it without too much trouble as he has proven time and time again to bounce back quickly. There are some chemo treatments that give mouth ulcers but not as severely as the methotrexate. There will be a lot of time spent in clinic waiting and having treatment but we get to sleep at home every night (not that sleep is likely but still). Oscar will be waking all through the night to eat due to the steroid making him so hungry but we have been through it before and know what to do.
This is the last two months of intensive treatment and all I could say to our Oncologist yesterday was: "Are we there yet?" She laughed and said anything can happen but your getting there.
Wish us luck tomorrow and thanks for all your kind messages and support. It means the world to us. x
Tuesday, November 30, 2010
Tuesday, November 16, 2010
Hospital - take two
OK, Oscar's platelets have dramatically increased from 30 to 170, which they find unusual and think it is possible the blood result on Sunday night was incorrect and that we may have been able to go ahead on Sunday after all. I am going to choose to disregard that information because it doesn't help in any way - it just makes me want to bang my head on the wall. No point in that so we are heading in tonight with a positive feeling that this is our last one of these treatments and looking forward to having a good experience and getting home ASAP and then staying there.
I'll give you an update when we get back. We head in at 7.30pm, which is a total nightmare for Oscar and I timewise but it is definately the last time we will be doing this particular dance. Must go, repack, cook, load the car up and head out. Wish us luck.
I'll give you an update when we get back. We head in at 7.30pm, which is a total nightmare for Oscar and I timewise but it is definately the last time we will be doing this particular dance. Must go, repack, cook, load the car up and head out. Wish us luck.
Sunday, November 14, 2010
The Roller Coaster Goes up for Oscar's Birthday - and then comes crashing back down again
Friday Oscar's blood results were good and we were booked in for admission on Sunday night, provided there was a bed. We were warned that the bed situation was worse and to expect a few days delay.
Saturday Oscar turns 2 and we have a wonderful day with visits from Nana and Roby (puppy), balloons, cake and a visit to the Koala Park where the boys got to feed kangaroos and pat a koala. (I will put photo's up when I get a chance)
Sunday we head out to visit my Dad - we haven't been to his house since he moved in around January and Pete has never been there so I was keen to catch up with them. Of course, we get there and get a call from the hospital at 10am asking if Oscar has a runny nose as they are sorting a bed out for him. So we race home, pack our bags, get told we have a bed and go in at 4.30pm for the final round of this treatment. Hooray!
On the way to the hospital Oscar is hysterical. He knows where we are going and this time he really is putting up a strong protest. He is screaming, saying, "Mummy, cuddle, scared, no, other way, home, Daddy, brother." and this mantra is repeated over and over until he is so hysterical he is turning purple in the face and dry retching. I'm stuck and can't pull over to help him and have to just keep trying to talk him down. Finally, I am able to pull over but I can't get him to stop dry retching. At the hospital I physically cannot get him in the pram. He is so strong and arching his back and screaming at me to go home. I have to just sit with him and cuddle him for what seems a long time and then have to carry him in, pushing our pram and luggage. We arrive and the nurse messes around with Oscar for an hour and a half, overstimulating him until he is psychotically charging up and down his cot. It takes me three hours to settle him.
Ah, I get my coach bed made up and fall asleep. An hour later, at about 10.30pm, a nurse wakes me to tell me that Oscar's blood results show his platelets have dropped dramatically and they can't go ahead with the treatment. She says I should go home and come back into clinic on Wednesday to start the whole process again. His platelets either will naturally recover or he will need a platelet transfusion. Oscar has only been asleep an hour and after how upset he was I can't bring myself to wake him so I ask if it is ok if we stay overnight and leave when he wakes. I also don't want to go out to the carpark on my own in the middle of the night as its not the nicest of places. So it is that we have a sleep over in hospital except I can't go back to sleep. So I repack all our belongings, get a cup of tea, read a number of magazines, do my meditation tape three times, finally drift off for an hour and Oscar wakes at 7am and we go home.
Poor little Oscar. He just keeps getting kicked in the teeth again and again.
On the bright side we were very lucky to get to be home to celebrate Oscar's birthday and it was a great day. Also, Auden was overjoyed we were back so soon (although we will have to do the whole separation dance again later in the week) and Oscar gets some more time for the ulcers in his mouth to heal before they hit him again with the chemo. Mum raced down from Armidale for no reason and I missed out on yet another nights sleep but at least we found out before they accidentally went ahead with the treatment.
So we keep riding the rollercoaster and find a way to stay positive amidst the sleep deprivation and chaotic disappointments. Hopefully we will be in hospital later in the week and Oscar will be treated and recover before Auden's birthday on the 27th. Finger and toes crossed. x
Saturday Oscar turns 2 and we have a wonderful day with visits from Nana and Roby (puppy), balloons, cake and a visit to the Koala Park where the boys got to feed kangaroos and pat a koala. (I will put photo's up when I get a chance)
Sunday we head out to visit my Dad - we haven't been to his house since he moved in around January and Pete has never been there so I was keen to catch up with them. Of course, we get there and get a call from the hospital at 10am asking if Oscar has a runny nose as they are sorting a bed out for him. So we race home, pack our bags, get told we have a bed and go in at 4.30pm for the final round of this treatment. Hooray!
On the way to the hospital Oscar is hysterical. He knows where we are going and this time he really is putting up a strong protest. He is screaming, saying, "Mummy, cuddle, scared, no, other way, home, Daddy, brother." and this mantra is repeated over and over until he is so hysterical he is turning purple in the face and dry retching. I'm stuck and can't pull over to help him and have to just keep trying to talk him down. Finally, I am able to pull over but I can't get him to stop dry retching. At the hospital I physically cannot get him in the pram. He is so strong and arching his back and screaming at me to go home. I have to just sit with him and cuddle him for what seems a long time and then have to carry him in, pushing our pram and luggage. We arrive and the nurse messes around with Oscar for an hour and a half, overstimulating him until he is psychotically charging up and down his cot. It takes me three hours to settle him.
Ah, I get my coach bed made up and fall asleep. An hour later, at about 10.30pm, a nurse wakes me to tell me that Oscar's blood results show his platelets have dropped dramatically and they can't go ahead with the treatment. She says I should go home and come back into clinic on Wednesday to start the whole process again. His platelets either will naturally recover or he will need a platelet transfusion. Oscar has only been asleep an hour and after how upset he was I can't bring myself to wake him so I ask if it is ok if we stay overnight and leave when he wakes. I also don't want to go out to the carpark on my own in the middle of the night as its not the nicest of places. So it is that we have a sleep over in hospital except I can't go back to sleep. So I repack all our belongings, get a cup of tea, read a number of magazines, do my meditation tape three times, finally drift off for an hour and Oscar wakes at 7am and we go home.
Poor little Oscar. He just keeps getting kicked in the teeth again and again.
On the bright side we were very lucky to get to be home to celebrate Oscar's birthday and it was a great day. Also, Auden was overjoyed we were back so soon (although we will have to do the whole separation dance again later in the week) and Oscar gets some more time for the ulcers in his mouth to heal before they hit him again with the chemo. Mum raced down from Armidale for no reason and I missed out on yet another nights sleep but at least we found out before they accidentally went ahead with the treatment.
So we keep riding the rollercoaster and find a way to stay positive amidst the sleep deprivation and chaotic disappointments. Hopefully we will be in hospital later in the week and Oscar will be treated and recover before Auden's birthday on the 27th. Finger and toes crossed. x
Sunday, November 7, 2010
Hospital, home and healing the hurt
We were discharged from hospital on Thursday afternoon. Oscar cleared the chemo from his system very quickly and his recent kidney function test shows that he is within the normal range. So this is very good news and better than our Oncologist expected.
The time in hospital was very intense and without any sleep for me. I found a way to get Oscar to sleep a lot in there by closing him up in his pram and playing his ocean sounds music. He needs almost triple the amount of normal sleep when he has this treatment I have discovered and that seems to make a difference in his comfort levels. We shared a room with a newly diagnosed little boy the same age who did not speak or even move much. He has a different kind of cancer and his treatment and prognosis are considerably less positive than Oscar's and the family were really struggling to come to terms with the diagnosis. My heart goes out to them and I tried to give them any help I could but it was very distressing having the Dad sit on my bed at some crazy hour of the night asking me questions like, "Why has god done this to me and my little boy. He hasn't done anything to be punished for", and so on. I tried to gently explain that all the energy he has at the moment needs to go into helping his son and asking questions like that won't help and will just drain precious energy. I managed to calm him down but that night was very rough with many Dr's and nurses trying to help his little boy who has had temperatures for days without a cause, despite every test known to man. Oscar, as always, picked up on the energy in the room and kept saying "Boy crying, crying" and looking concerned. It is becoming clearer each time we go to hospital that part of Oscar's journey is to witness the journey of other little people facing similar and tougher challenges than he is facing. It certainly helps you keep perspective on how lucky you are and how there is always someone worse off than you.
We also discovered that the Camperdown Ward is like a crazy war zone these days as it is always completely full with between 10 and 15 people being refused beds every week. This just increases the intensity of the experience for everyone, especially the nurses. I had one nurse walk in and say, "Don't expect us to be nice to you, smile, talk or doing anything other than administer medication today. We are flat out, worked 12 hours straight without food or a break and still can't get to the buzzers on time. People are vomiting because we can't get the medication in on time every time and there are some extremely critical children needing extra attention." These nurses work long hours in difficult conditions with traumatised children and parents every day. The things they have to deal with are incomprehensibly challenging and I wish I could find a way to thank them and give them back some of the care they give to us and all the other families. I try to remember that as hard as it is for us to be there it is even harder for them to manage all the different levels of care, varying personalities of both parent and child and still keep on schedule and smiling. They deserve more help, more money, more volunteers and more gratitude than they get and I will find a way to thank them before we are through with this treatment.
Since we got home we have been anxiously waiting to see if Oscar would get mucositis and yesterday he woke with severe mouth ulcers throughout his mouth. He has been in a lot of pain and I have no doubt that if a Dr had seen him yesterday they would have admitted him to hospital straight away. I held off taking him while I was able to keep the pain medication and fluids in him. This is a huge responsibility and a tough call because he can't speak to tell me how bad the pain is and I have to be guided by my intuition. If I keep him home he heals quicker for obvious reasons and the minute he is in hospital all eating and drinking will stop and he will be anxious. On the other hand, in hospital they can give him all his medication through the central line and that is less painful than trying to swallow it at home. I made a decision to stick it out and was able to get the pain medication down his throat and continue enough fluids to get hims through the night and he seems slightly improved today. He has managed to play in the sandpit and forge ahead with some normality as long as I keep the pain medication and the mouth wash in. It is a huge relief that I made the right decision and I was able to manage it exactly as they do in hospital - setting my alarm two hourly to check his temperature and maintain medication and offer fluids throughout the night. Oscar slept much better than he would have in hospital and that also helps.
He's very brave as the pain is pretty excruciating at times and he has been nauseous and vomiting for days as well. All this is improved a little today. So hooray for Oscar and I feel certain we won't have to be in hospital now until the next treatment on Sunday/Monday.
The good news is we have only 1 more of these treatments to go. Yay!! It is a 24 hour, 7 day job keeping up extra medication and focusing on getting him through each one of these nasty treatments so it will be a relief to get that last one over and done with.
We feel like we have dropped out of normal life completely during this phase of treatment as it has taken up our entire concentration. We hope to be able to see everyone soon. Oscar turns 2 on Saturday, goes into hospital Sunday for the last treatment and we are hoping he will be fully recoverd by Auden's birthday on the 27th so we can have some form of celebration. I'll keep you posted.
Thanks to everyone who sent me messages, visited us in hospital and kept us in their thoughts during this really challenging time. We are grateful, grateful, grateful.
The time in hospital was very intense and without any sleep for me. I found a way to get Oscar to sleep a lot in there by closing him up in his pram and playing his ocean sounds music. He needs almost triple the amount of normal sleep when he has this treatment I have discovered and that seems to make a difference in his comfort levels. We shared a room with a newly diagnosed little boy the same age who did not speak or even move much. He has a different kind of cancer and his treatment and prognosis are considerably less positive than Oscar's and the family were really struggling to come to terms with the diagnosis. My heart goes out to them and I tried to give them any help I could but it was very distressing having the Dad sit on my bed at some crazy hour of the night asking me questions like, "Why has god done this to me and my little boy. He hasn't done anything to be punished for", and so on. I tried to gently explain that all the energy he has at the moment needs to go into helping his son and asking questions like that won't help and will just drain precious energy. I managed to calm him down but that night was very rough with many Dr's and nurses trying to help his little boy who has had temperatures for days without a cause, despite every test known to man. Oscar, as always, picked up on the energy in the room and kept saying "Boy crying, crying" and looking concerned. It is becoming clearer each time we go to hospital that part of Oscar's journey is to witness the journey of other little people facing similar and tougher challenges than he is facing. It certainly helps you keep perspective on how lucky you are and how there is always someone worse off than you.
We also discovered that the Camperdown Ward is like a crazy war zone these days as it is always completely full with between 10 and 15 people being refused beds every week. This just increases the intensity of the experience for everyone, especially the nurses. I had one nurse walk in and say, "Don't expect us to be nice to you, smile, talk or doing anything other than administer medication today. We are flat out, worked 12 hours straight without food or a break and still can't get to the buzzers on time. People are vomiting because we can't get the medication in on time every time and there are some extremely critical children needing extra attention." These nurses work long hours in difficult conditions with traumatised children and parents every day. The things they have to deal with are incomprehensibly challenging and I wish I could find a way to thank them and give them back some of the care they give to us and all the other families. I try to remember that as hard as it is for us to be there it is even harder for them to manage all the different levels of care, varying personalities of both parent and child and still keep on schedule and smiling. They deserve more help, more money, more volunteers and more gratitude than they get and I will find a way to thank them before we are through with this treatment.
Since we got home we have been anxiously waiting to see if Oscar would get mucositis and yesterday he woke with severe mouth ulcers throughout his mouth. He has been in a lot of pain and I have no doubt that if a Dr had seen him yesterday they would have admitted him to hospital straight away. I held off taking him while I was able to keep the pain medication and fluids in him. This is a huge responsibility and a tough call because he can't speak to tell me how bad the pain is and I have to be guided by my intuition. If I keep him home he heals quicker for obvious reasons and the minute he is in hospital all eating and drinking will stop and he will be anxious. On the other hand, in hospital they can give him all his medication through the central line and that is less painful than trying to swallow it at home. I made a decision to stick it out and was able to get the pain medication down his throat and continue enough fluids to get hims through the night and he seems slightly improved today. He has managed to play in the sandpit and forge ahead with some normality as long as I keep the pain medication and the mouth wash in. It is a huge relief that I made the right decision and I was able to manage it exactly as they do in hospital - setting my alarm two hourly to check his temperature and maintain medication and offer fluids throughout the night. Oscar slept much better than he would have in hospital and that also helps.
He's very brave as the pain is pretty excruciating at times and he has been nauseous and vomiting for days as well. All this is improved a little today. So hooray for Oscar and I feel certain we won't have to be in hospital now until the next treatment on Sunday/Monday.
The good news is we have only 1 more of these treatments to go. Yay!! It is a 24 hour, 7 day job keeping up extra medication and focusing on getting him through each one of these nasty treatments so it will be a relief to get that last one over and done with.
We feel like we have dropped out of normal life completely during this phase of treatment as it has taken up our entire concentration. We hope to be able to see everyone soon. Oscar turns 2 on Saturday, goes into hospital Sunday for the last treatment and we are hoping he will be fully recoverd by Auden's birthday on the 27th so we can have some form of celebration. I'll keep you posted.
Thanks to everyone who sent me messages, visited us in hospital and kept us in their thoughts during this really challenging time. We are grateful, grateful, grateful.
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