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Tuesday, August 31, 2010

A Visit to Nuclear Medicine

Oscar did well today. He went to Nuclear Medicine and had a die put into his system with a nasty needle in the back of his hand and didn’t even cry. The Dr’s thought this amazing. Then, each hour, they took blood from his central line to test how his kidneys were doing at excreting the die. He slept through one of those blood tests and generally made everyone’s day easy by cruising through without complaint. I can definitely learn a thing or two from him.

We will get the results on Friday. We are also hoping on Friday that his haemoglobin has come back up and he doesn’t need a transfusion.

Thanks for your positive thoughts and keep them coming please. Oscar is a wonderful magnet for positivity. Unlike his mother, who is struggling to keep the momentum going and wishing for a shoulder to lean on, a sunlit spot to sleep away the exhaustion and a day filled with dreaming. Oh well, tomorrow is another day and Oscar seems to know the way. (OK, yes that last sentence did rhyme and I am a little delirious with overtired brain fog so I will log off now, I promise).

Monday, August 30, 2010

Monday 30th August Clinic

I woke up this morning and declared to anyone who would listen that it was going to be a good day. Nothing was going to stop us from having a good day. Clinic was insanely busy - some people waited 4 hours just to get a blood test. There were people having blood transfusions in the hall way. Total chaos.

We were lucky. Oscar's bloods were good enough for him to go ahead with the 6 hour treatment. There were few seats left in the treatment room so we cruised around on his IV drip stand. Children were fighting over the DVD player and ended up breaking it. I was determined to have a good day so I took control (yes, I know, I can't help being a control freak). I fixed the DVD player and told all the children they could choose one DVD each and would have to take turns waiting for their choice to be played. They had to choose G rated for the little ones. I gave them limited options but they seemed to go along with it. The nurses were way too busy to be dealing with stupid fights over the TV.

It ended up being a good day - my determination to make it so actually worked. Just goes to show the power of the mind when you can get it working for you (which can be a challenge at the best of times). I even convinced Oscar to sleep in his pram for two hours, then stole a pillow from a room down the hall and curled up on the floor for my own nap. Seriously, you gotta do what you gotta do sometimes.

Blood results:
Haemoglobin: 78 (will need a transfusion if it drops below 70)
White cell count: 1.1
Neutrophils: 0.3
Platelets: 123 (within normal range again!)

Tomorrow is the kidney function test so please send us some positive thoughts that his kidneys are up to the task of coping with all this chemo. Friday, back in to check haemoglobin levels. This is supposed to be our two weeks off and is more hectic than an average week but as long as Oscar gets better who cares?

Saturday, August 28, 2010

Photo's


Eating a cup of chocolate after Oscar's meds




Oscar after a month on steroids




We have a picnic every sunny day we can



Wrestling with brother - almost every minute




Chasing and loving the cats


In between hospital visits we try to fit in as much fun as we possibly can. I never get time to write about the fun stuff so here are some pictures instead. Oscar has lost more hair this week and is looking different still so I'll try to get some more downloaded soon.

Friday, August 27, 2010

Friday's Clinic Visit

Today Oscar's platelets had risen slightly to 30 so they are on the way up and he should be ready for treatment on Monday. No transfusion was given.

So, next week should hopefully be a full days treatment on Monday and another long day Tuesday for a kidney function test and then I think we get a short break before we start the next phase of treatment.

Blood results today were:
Haemoglobin: 88 (normal 120-160)
White cell count: 1.8 (normal 5-10)
Neutrophils: 0.0 (neutropenic again)
Platelets: 30 (normal 150-300)

Wednesday, August 25, 2010

Wednesdays' Clinic Visit

Oscar's platelets have dropped lower so we could not go ahead with treatment again today. The Dr said it was nothing to be concerned about because platelets are produced by the bone marrow, platelet counts decrease during chemo treatment. A transfusion is only given when they drop below 20, Oscar's are at 23, so no transfusion yet. We go back to Clinic Friday when the Dr thinks one of three things will happen:

1. His platelets will have dropped below 20 and he will be given a transfusion and sent home to come back on Monday for treatment.
2. His platelets will have started to rise again but won't be above the 50 required to go ahead with treatment - so we will go back home and come in for treatment on Monday.
3. His platelets will have risen above 50 and all the other blood levels will be sufficient that he can have the treatment on Friday.

The Dr's bet is that it will be number 2.

I gave Oscar his last dose of chemo for this phase of treatment last night so his body will start to build back up again. Once the chemo with the 6 hour drip is complete, most likely on Monday, then he gets a break before we start the fortnightly hospital stays of 3-5 days.

Blood results were:
Haemoglobin: 96 (normal is 120-150)
White cell count: 3.1 (normal is 5 - 10)
Neutrophils: 2.1 (not neutropenic)
Platelets: 23 (normal 150-300)

Monday, August 23, 2010

Platelets too low for treatment today

Today Oscar's blood results prevented him from having the chemo and 6 hour drip they were hoping to give him. His platelets were too low - they needed to be at least 50 and were 47. It took 4 hours just to find this out. We will be back in clinic again on Wednesday and hope his blood results are good enough to go ahead.

For those who are interested his blood results were:
Haemoglobin: 102 (normal 120-160)
White cell count: 3.6 (normal 5 - 10)
Neutrophils: 2.6 (the highest they have ever been and no longer neutropenic)
Platelets: 47 (normal 150-300, transfusion required when they drop below 20)

Don't ask me how the platelets are going to go up without a transfusion as I have no idea, especially as I am still giving him chemo each night (which kills blood cells and platelets) but we will wait and see. I'll update you Wednesday.

Keep sending us the positive vibes. Oscar loves receiving them.

Saturday, August 21, 2010

Oscar's Central Line




I thought you might be interested in seeing Oscar's central line. In the picture he has the ends of it in a monkey pouch given to him by the nurses. The central line is a soft flexible tube made from silastic, which is placed into a large vein near the heart. This is done in surgery as soon as possible after diagnosis. Oscar had his within 24 hours.

Basically, the central line is the easiest, least painful way for the nurses to take blood and administer intravenous chemo or other drugs. It's pretty ingenious and we are very grateful that he doesn't have to have a nurse search his collapsing veins for hours, which is what happened our first day in casuality.

He will have it in for two years and can't get it wet at all. We've developed a special apron for bathing and will have to sort something out for summer water play. Many, many kids end up, at some stage, pulling it out. This isn't that easy to do because there is a loop in the line so that if they accidently pull on it they don't actually tear at the skin that it is encased in. Many other children sometimes actually chew through the line as well. Some manage to do both at the same time. Hard to believe but they tell us its more common than not and to expect it to be part of his journey. We have emergency procedures if any of those things happen.

Eventually, I will need to learn how to change the dressing and how to flush the line with saline solution. For now, the nurses are kindly doing that for us.
So far Oscar pretty much ignores it unless a nurse is taking blood and then he sits in complete facination watching her with it. They all think he's exceptionally good at letting them take blood and give drugs which are cold when they go in. Many kids scream. Oscar just laps up all the attention and asks constantly for a sticker (they give them out as rewards).

Wednesday, August 18, 2010

Quick Update

We've had a long day in hospital today so this will be a quick update as I know people will be wondering how it went.

Basically, Oscar had a lumber puncture today and a blood transfusion. His haemoglobin was only just below the minimum before transfusion but we opted to give it to him today so he can feel good over the weekend. He took a long time coming out of the anaesthetic today but seemed fairly happy tonight.

On Monday, if his blood results are sufficient, he will have a full day of chemo and a 6 hour drip of fluids. If his blood results are not what they require he will come home and go back again on Thursday to see if he is ready to have the chemo and drip then. This will complete the induction phase of his therapy.

After that, he has two weeks off treatement to allow his white cell count to come up. Then he will have a bone marrow biopsy. This is the really important one they send off to the United States to confirm what level of risk he is and therefore which protocol of treatment he will receive. We are hoping that he is in the standard risk category with the least intensive treatment.

Once he has had the bone marrow biopsy he starts the next phase of treatment which involves a 3-5 day stay in hospital every second week for two months. The length of each stay will depend on how quickly his kidneys are able to excrete the excess fluids from the treatment. This will be a true test of Oscar's kidneys due to his kidney reflux condition. We are hoping he doesn't have to stay longer than the average of 4 days.

Please keep sending those positive thoughts and prayers toward Oscar's greatest good in this journey he is taking.

Aside from that, we have also been busy with a visit this afternoon from Sydney In Home Child Care. This is a service offered to families with a child with a life threatening illness and allows the siblings to have child care in the home (because going to a child care centre is not appropriate due to the germs the sibling will bring home). We have been approved 50 hours a week of care by centrelink and are waiting to meet a carer tomorrow. We are hoping she is the perfect match for our family, especially with all this hospital time coming up. Auden will be needing some special attention too during this time so please send him some positive vibes that his carer and his experiences during this time are full of love and light.

We will also be needing help from family and friends, particularly during hospital stays but I will explain more about that when it gets closer.

I have to go eat and sleep now so please forgive me if you are waiting on a phone call. I will endeavour to catch up when I can. Just know that all is well and thanks for keeping us in your thoughts.

Sunday, August 15, 2010

What really matters

OK, enough boohooing and back to what really matters: Oscar’s medical status.

They checked his blood levels today and they are ok but he may need a blood transfusion on Wednesday. He is having another lumbar puncture on Wednesday so he will be fasting from midnight tomorrow. We are currently completing the last week in the second phase of treatment so the chemo schedule will change next week but we aren’t sure yet what the next phase will be – it will depend on his blood results. He will be due for another full day in the hospital with a 6 hour drip if his blood results are ok and then we will have to wait and see what comes next. There is a phase where he will be in hospital for 4 days every second week – and this happens over two months so that he has 4 stays of 4 days. This is the only scheduled hospital time – any other hospital stays are due to temperatures, illness etc.

Physically he is improving and starting to stand properly on his right leg now. This is great news as it means he won’t have to have the bone scan that was scheduled for this week. We are very grateful for this as the test is usually done under anesthetic but as he has had so many of them they wouldn’t let him have another – which would have meant strapping him down and letting him scream for the full 45 minutes of the procedure. Phew – so thankful not to have to go through that.

His hair is coming out now in handfuls but we are told it often grows back thicker and curly, which will make Oscar happy as he might get to have curls like his brother and basically all he wants at this point in time is to be exactly like his brother.

His weight is steady which is particularly good as many children have started to lose weight at this stage as the chemo reduces their apatite. He snacks all day and clearly isn’t that hungry but still drinks his bottle and is doing well at maintaining his weight so far.

That’s about it for now. We will update you when we know what the next phase involves.

Many thanks again for all your kind comments, encouragement and support. We are blessed to have so many people caring about us on this journey.

Here are the blood results for those who are interested:
Haemoglobin: 72 (normal 120-160) – may need transfusion Wednesday.
White Cell Count : 1.0 (normal 5 – 10)
Neutrophils: 0.3 (still neutopenic)
Platelets: 196 (within normal range of 150-300)

Wednesday, August 11, 2010

Hospital

Sorry for not having updated the blog but we have been in hospital for five nights, arriving home exhausted and traumatised last night. So this is my first opportunity to fill you in.

Last Thursday night at 6pm Oscar's temperature hit 38 and we had to head in to emergency. They were informed of our impending arrival so that when we arrived we would not be sitting with the general population and exposed to germs. I arrived at 7pm and was put in a small isolation room where the nurses took a full history, took his bloods and did hourly observations of his temperature and blood pressure. Emergency was like a war zone - one of the busiest nights they have had in a long time - and as I looked around outside my window at queues of people sitting on the floor holding sick, injured or hysterical children I couldn't help thinking about what it would be like if you were a survivor of a natural disaster like a tsunami, flood, etc. There seem to be so many of them in the news these days and I cannot imagine what it would be like to be in trauma without any proper care, let alone compromised care. I felt very lucky to have my own room and to have nurses attending to us.

I knew it would be a long wait so I settled Oscar in his pram and sat and read, promising myself no matter how frustrating and exhausting the process was I would stay calm. I would be Gandhi, full of wisdom and non-violent good will. At 2am we were finally sent to a room on Variety Ward where there are isolation rooms - because of Oscar's exposure to chicken pox we weren't allowed to go back to the familiar Camperdown ward, which is the children's cancer ward that we spent 17 days in at the beginning of this journey. I had to wake Oscar to put him in a cot which they wheeled up to his new room. Before we left the nurse took his temperature and blood pressure so I was a tad frustrated when they wanted to take it again when we arrived in the new room just 5 minutes later. It woke and upset Oscar as he was sick of being messed with, scared of being wheeled into a new room in the middle of his sleep and not coping with the relentless poking and prodding. I didn't say anything though as they are just doing their job and it is hospital policy they have to follow. I am getting to know the bureaucracy and trying hard to be patient with it even when it does cause Oscar what I consider to be unnecessary disturbance. Seriously, could his temperature have changed in five minutes? I reminded myself - you are Gandhi - be calm.

Of course, after sleeping soundly in his pram in emergency where I had nowhere to sleep, now that we are in a room with a sofa bed for me Oscar screams his head off for the next couple of hours. The movement into a new room and a new stranger taking yet another blood pressure sent him into extreme distress. I felt my own heart tearing as I tried to calm him but he had been pushed beyond his limit. I wanted desperately to point out to the nurse that he has been an angel and has incredible tolerance. Every other young child in emergency was relentlessly screaming their lungs out and he managed to cope with a team of strangers in a very bright fluorescent room coming at him from all directions with such grace - could they not just have rewarded him for being one of the few children who had required almost no attention in a place of trauma? Could they not have let him alone for another hour to settle? Ahhhh

At 4am he finally slept, at 5am they woke him taking observations, 5.30am back to sleep, 6am more observations and blood taken and then no return to sleep. Oscar was wired and anxious and jumpy for the rest of the morning. Our nurse was unfriendly and gruff with us and wanted to take blood with a pin prick in his finger despite the fact that he has a central line for that very purpose - to make it easy and painless for him. And so on.

The next shift of nurses came to convince me to hand over Oscar's formula so that they could prepare them in a sterile environment and have them in the fridge ready. I resisted this after my experience last time where I was at the whim of nurses to bring Oscar his bottle and ended up setting up my own miltons and making them myself so he wouldn't have to wait when he wanted his comfort bottle. This is the one thing left that I can do for him. I cannot protect him from the pain, the traumatic procedures, the constant stream of strangers poking and prodding him, the exhaustion of the disease and the drugs that cure it. In hospital I can't even give him the comfort of his own bed, his brother, his daddy etc etc. Literally the only things I have left to give him are my good humour, my cuddles and his bottle. So I didn't want to give away control of the bottle but they insisted it was hospital policy. I warned the nurse, "If I can't get a bottle when he is distressed and wants one you will have an hysterical mother on your hands. Please hear me when I say this to you." Don't worry, she says.

Of course when he wanted his bottle 3 hours later they still hadn't made them up and had to go to the dietitians to get my formula back to make them. It took another hour and a half to get it to Oscar's mouth. By that time he was hysterical, banging his head on the cot and saying over and over, "bobble, bobble, bobble" (his pronunciation of bottle). I felt so anxious and distressed I absolutely lost my mind at the nurse who had promised me this wouldn't happen and finally the bottle appeared, not warmed as promised and Oscar threw it at the floor and threw himself down on the cot beyond hysterical. He wouldn't let me cuddle him, he was hitting me and I just couldn't breath. I felt trapped in an isolation ward of hell.

I won't bore you with what the next 5 nights and days involved but it was like that only sometimes significantly worse, sometimes better. The relationship of trust they say they try to build was well and truly broken and I was stuck in a small room with a toddler who wanted to go outside and play, couldn't get his bottle when he needed it, missed his brother and daddy, had a mouth full of infected and huge ulcers, was attached to two iv drips at all times that twisted around his body as he played and tore at his central line - and there was no other choice.

This experience has deeply traumatised me, more so even than the early days of his diagnosis. It is tremendously challenging having a child diagnosed with a life threatening illness but to also feel a distinct lack of professionalism and quality in the care of your little baby going through this journey is another kind of distress. So I feel a need to withdraw, contemplate, do yoga and meditate each night and try to find my way through this darkness back to the light and the positivity that Oscar needs and deserves from me.

I am deeply disappointed in myself for not being as evolved a human being as Gandhi was - but then Gandhi wasn't a mother.

Please keep sending your positive vibes and prayers and I will update you with more of the medical stuff soon. I just couldn't get it all together in my head to explain what is coming up next. We are in clinic tomorrow, lumber puncture Monday, bone scan Wednesday and yet there is more. I will tell you soon.

In this moment of now I must retreat and find some peace.

Thank you again for taking this journey with us.

Monday, August 2, 2010

All Is Well

Oscar had a good day at hospital today. I managed to keep him distracted while waiting for his anesthetic and lumber puncture despite his hunger and he was first in at 10.00am. What a blessing! His blood results were ok - nothing unexpected.

He has a break from anesthetics next week, with his next lumbar puncture the following week. The nurse is coming out on the other days and we are not back in there until next Monday to check his blood results and make sure he is tracking along well.

I actually got to talk to our Doctor today and he explained that the next bone marrow, which is in about 30 days time, is particularly important. They define his current remission as less than 5% leukemic cells in the marrow but their microscope cannot see the specifics of how much withing that 5%. So the next bone marrow sample gets sent to the United States where they can analyse it to a much more accurate level and provide us with more information. His treatment will then be assessed based on those results.

For now, we sit with the uncertainty with grace and have faith that all is well.

Please keep sending us those positive vibes: we are focusing on Oscar staying at home and well, ensuring the chemotherapy does the job it needs to do without compromising his quality of life and keeping him happy, smiling and dancing.