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Thursday, September 30, 2010

Home again with a smile on our face

We are home already from hospital after only 3 nights! Oscar's little kidneys got rid of the chemo quickly and we were very surprised to find ourselves packing up to go home today. Overall, it was a fantastic visit. We had our own room which was extremely lucky and made a huge difference to Oscar's comfort levels. I spent the first night sitting up with him on me and the next day he was fasting until 1.30pm when they took him in for his lumber puncture. That was a hard day but we are getting better and better at these challenges and finding many ways to get through them without too much distress. Trauma is getting less foreign for us and we are grateful for such a great stay in hospital.

The day before we went in the Dr explained that the bone marrow results from day 33 of treatment (the one we found out he was in remission) and the recent bone marrow of day 79 of treatment were being compared to assess Oscar's risk levels. We were told that there were three possible results:

1. Both bone marrow results showed up negative - meaning there was no leukemic cells in either bone marrow sample. This would mean Oscar would have a 80-90% chance of survival.
2. The first bone marrow showed some leukemic cells but the second showed a reduction in the amount. This would mean a 60-70% chance.
3. The first bone marrow showed some leukemic cells and the second showed an increase. This would mean the treatment is not working and result in needing a bone marrow transplant.

Yesterday our results came through and we were overwhelmed with joy that Oscar's results showed the best possible outcome - number 1 above. That is to say both bone marrow results showed negative for leukemic cells.

So - for everyone out there who has been praying/thinking/wishing for Oscar's highest good I would like to say a huge thank you. We have achieved a wonderful result and I am deeply grateful for your support - it has made a huge difference. More than the limitations of words can express.

I also want to say that I am very proud of Oscar. He has had more trauma in his small life than many people experience in a lifetime. There is so much that goes on that we don't share because it is just too hard and big to explain but no matter how hard or how big Oscar keeps smiling and taking it all in his stride. All of us have really done a great job of putting the next foot forward and sitting in trauma, looking each other in the eye and saying, "It's ok, we can do this".

The Dr's have told us that although this is the best possible news at this stage there is a long way to go and many more procedures to get through. We just need to keep doing what we're doing. So please keep reading this blog, sending me messages or thinking of us - it has helped me in ways I cannot explain.

Thank you and hooray for Oscar! Have a drink or two to celebrate!

Sunday, September 26, 2010

Off to hospital

OK, we are in hospital tomorrow AM to sign the papers for admission and blood tests. Then we come home and go back in for admission before 8pm. Then Oscar is fasting from midnight as he will have a lumber puncture on Tuesday morning and they also start the drip of chemo at 6am Tuesday. Fluids will continue via drip until his kidneys have recovered from the chemo - approx. 3-5 days. Then we come home and do it all again a week later and so on for the next two months.

That is always on the proviso that they have a bed available, otherwise there may be some delay. So, fingers and toes crossed we have a good experience with a nice family to share our room with and a positive and quick recovery for Oscar so he can get back to what he loves best - playing with brother.

I am taking my laptop and will attempt to update the blog from in hospital. Thanks again for all your support and if you are able to please come visit us in hospital some time. I will have my mobile.

Monday, September 20, 2010

Monday 20th Sept Clinic

Thanks so much for all the positivity and prayers sent our way today. Oscar's blood results were OK to go ahead and he had the bone marrow aspiration today. This is the one they send to the U.S. but they will know enough to be able to give me an idea about results by the time we go into hospital next week and if there was anything major they would let us know pretty quickly. I have a good feeling about it and Oscar is well.

He did come out of the anisthetic distressed today as they were rushing through a lot of procedures and woke him too early. He was throwing himself around and was extremely heavy and dopey, hitting me and screaming. Nothing a bit of chocolate couldn't fix eventually though.

So, tonight I go back to giving him chemo and next Monday afternoon we go into hospital for 3-5 days for the 'Block M' treatment.

Please keep sending us those positive thoughts and prayers that Oscar's results from today are the best they can be and that his treatment in hospital runs smoothly, his kidneys do what they need to do and that it all works out to his highest good.

Thank you. Thank you. Thank you.

And if you do find some spare time and you have the inclination here are a few things that could help us over the next couple of months during hospital stays:
  • cook a meal for us
  • if you have an old toy that suits the hospital environment then maybe you could lend it to us for one of our hospital stays - it would be new to Oscar and keep him occupied
  • visit us - its very lonely and it would help me to have some distraction
  • send me a text of encouragement or just let me know you are out there thinking of me

Thanks again. Every bit of love you send us comes back to you magnified in many ways and especially by Oscar's beaming smile and my heartfelt gratitude.

Sunday, September 19, 2010

Positive People Power Please

OK, I should have done this earlier than now but have been sick and busy and....Anyway, if you happen to read this before tomorrow, Monday 20th then please send us lots of positive prayers and thoughts that Oscar's blood results are OK to go ahead with the important bone marrow biopsy and that the results of that biopsy are for the greatest good of Oscar.

I say a rhyme in my head: "Oscar's blood is well in each and every cell" over and over and sometimes say it outloud to Oscar all the way to the hospital.

If the blood results are OK to go ahead we usually end up in theatre around 10-11am so particularly think positive thoughts around this time please.

Oscar is open to receiving all your positivity so he can move onto the next phase of treatment.

Thank you for your support and we hope you and your loved ones are well too.



Oscar and Auden painting. They both thank you for all your kind words and prayers to keep them safe and healthy so that they can have fun together.

Friday, September 17, 2010

Update

We are all still home but we are all sick. The Dr was right, Oscar is fighting a virus and now we all have it. Not much fun but although Oscar's temp keeps rising it hasn't quite reached 38 yet. I think the antibiotics and antivirals they have him on are just enough to keep it at bay but not enough to totally get rid of it. So, I have my doubts about Monday going ahead. We'll let you know and keep your fingers crossed we don't go to hospital this weekend.

It would be nice to live in a world again where words had meaning and questions had answers and where you weren't constantly barraged with new and varied medical information. One day at a time, they say. You will find a new normal, they say. But this new normal is one where you don't ever seem to know anything and you are blindly trying to find the best approach without any guidance whatsoever. Whenever we ask a question, the answer is: we don't know. It is hard enough that we don't know why Oscar got this disease or whether he will be cured but the Dr's can't even tell us why some blood tests are so different to others and why other children respond differently. They seem to know so very little about this disease and focus on the treatment protocol without much understanding of how to adjust it to individual variations.

One day at a time - that is all we know and that is hard to live but we have no choice and will have to get past all our resistance and just do it.

Send us some positivity to keep the momentum going please and thank you for every little kind gesture, card, gift, comment, food and favours you have done for us along the way.

Wednesday, September 15, 2010

Wednesday 15th Clinic Visit

We couldn't go ahead with the bone marrow today as Oscar's neutrophils are still zero. The Dr is certain he must have a virus or something he is fighting that is keeping them from coming back up. We have been checking his temperature two hourly around the clock now for a couple of weeks and it hasn't hit 38 yet, but it is up again tonight at 37.7 and he has a runny nose. Living like this, with a hospital bag packed at the front door and checking him vigilently is getting a bit tiresome but so far so good, except of course we can't move forward with the treatment. This is why they say it is a 6 to 8 month intensive period of treatment - delays happen.

The down side to this delay is that his name is not booked for the bone marrow so he usually would have to go on an emergency list. This means that he would need to be at the hospital at 7.30am but may not get taken into theatre until 3pm. Given that he is fasting and usually asking for food from the minute he wakes this would be extremely traumatic. Fortunately, we had Dr Margaret today and she has given Oscar an older child's booking. This means she has the aweful job of ringing the parents of that older child to explain but, as she said, they can tell their 8 year old why they can't feed them. So this is an extraordinary generosity on her part and we are hugely grateful. If he can't go ahead on Monday though she is not in clinic and the Dr is not likely to make these arrangements for our next attempt. I will do the best I can to convince them though and hopefully Monday will go ahead and we won't have that problem.

The other down side to this delay is it means we have to wait longer to get Oscar's official full diagnosis from the U.S. Given that he has been undergoing treatment for three months it would be really good to find out exactly what situation he is in. Also, this extends the period of time he is going without chemo. The Dr did say it wouldn't make any difference to his overall outcome though but I'm not sure how long that remains the case.

The up side is that we just had our first consecutive run of 4 days without hospital or clinic visits since he was diagnosed on June 22nd. It has been a nice break from the endless packing, organising, waiting in queues and so on. Now, if his temperature stays down, we have been granted another 4 days. You've got to take the good stuff and really treasure it.

If we don't end up in hospital before Monday and if Monday goes ahead then we are likely to go into hospital the following Monday to start Block M (if they have a bed). One thing is for sure - there are a lot of 'if's' on this journey.

His other bloods are maintaining well at the moment. Here are the blood results for those who are interested:
Haemoglobin: 114
White cell count: 1.9
Neutrophils: 0
Platelets: 206 (they have dropped by 56 which does concern me a bit as the disease causes this and as he is not having chemo to treat the disease)

OK, if that all makes sense to you then you are doing better than me tonight. Sorry it is so all over the place but well - it just is.

Please keep the positive vibes coming that Monday goes ahead and that Oscar's sniffles don't turn into a visit to the hospital. Who knows, maybe this is a blessing in disguise and we will get 4 full days without treatment and trauma.

Friday, September 10, 2010

Friday 10th Sept Clinic Visit

Oscar's blood results were good today except for his neutrophils which are still at zero. We need his neutrophils to get up to a minimum of 0.5 before next Wednesday when he is scheduled to have his important bone marrow biopsy. All the other blood levels are good to go for Wednesday so I am sure his body will do what it needs to do to get the neutrophils up so he can have the biopsy and move onto the next phase of treatment, known as 'Block M'.

Block M requires 3-5 day stays in hospital fortnightly for two months. If all goes according to plan we will be admitted into hospital on Wednesday 22nd ready to start the drip of chemo at 6am on Thursday 23rd. That drip goes for 24 hours and is coupled with a special vitamin and fluids to help his kidneys excrete the chemo. We will be discharged when his kidneys have done their job which varies from 3-5 days but we are expecting it to be 5 for Oscar with his kidney's. Anything can happen though (and tends to) so we hope for the best and go with the flow.

Today's blood results:
Haemoglobin: 118 (normal is 120-160)
White cell count: 1.7 (normal 5-10, and need to stay above 1.5 for bone marrow to go ahead)
Neutrophils: zero (thinking positive thoughts that they are at least 0.5 please)
Platelets: 262 (normal 150-300) - very happy that they have remained strong this week

We will be staying in seclusion while Oscar has no neutrophils but we will be sure to fit in as much fun as we can. Please keep thinking those positive thoughts and have a great weekend.

Tuesday, September 7, 2010

Tuesday Sept 7th Clinic Visit

Oscar had a great day in clinic today. His blood results were good and we go again Friday to have them checked. Also, his kidney function test showed he is within normal range, although on the lower end of normal range. This is good considering his kidney reflux condition.

Next Wednesday 15th Sept Oscar has the big important bone marrow biopsy. This is the one they send to the U.S. to find out what risk level he is and what treatment protocol he will continue on. Please send out the positive thoughts and prayers that he is within the standard risk. Whatever the statistic, we know he's going to be just fine.

Today Pete took Oscar to clinic and I took Auden down to Long Reef headland. Ah, it was so good to go back to a place where I feel such belonging. The ocean (which Auden calls, 'big water') was a great reminder of how small I am in the big universe and how much energy and power there is out there in the world beyond my own confused brain. Then we stopped in at Ingrid's for a visit which was pure magic. Thank you Ingrid and thanks for all the food too.

OK, big positive vibes for next Wednesday and here are the blood results from today:

Haemoglobin: 117 (Friday's blood transfusion has lifted these to within almost normal range)
White cell count: 0.9 (they were non existent last week)
Neutrophils: (still non existent but they take longer to recover)
Platelets: 236 (normal is 150-300 and they have been staying steady so far for the past week)

Friday, September 3, 2010

Preparing for Hospital

After my last stay in hospital I am determined to ensure our next stay is as harmonious as possible. Now that I know what to expect there are some things I can take responsibility for doing in order to make it easier for the nurses and therefore easier on ourselves. I am putting a list here so I can refer back to it. If you have any experience with hospitals and have any suggestions please let me know.

  • Have a typed out, detailed list of all of Oscar’s medications to give to the nurses on admission (last time they forgot to put his anti-nausea medication on the Dr’s list and it took 24 hours to get a Dr to add it to the list, which meant Oscar felt sick unnecessarily for way too long)
  • Make a ‘Do Not Disturb’ sign for the door with the hours of Oscar’s day sleep written on it and explain to the nurses up front they can’t come in and do a procedure during that time unless absolutely necessary.
  • Before I go to sleep (ha,ha) find out who will be our night nurse and explain the tricks to getting Oscar’s observations (temperature and BP) without waking him.
  • Take the black cover for Oscar’s pram so that if we are in a shared room I can put him in that for his day sleep.
  • Take Oscar’s noise machine so I can play ocean waves during his sleep to block out the noise.
  • Do not give Oscar’s formula over to the nurses to prepare no matter how strict they are on this policy (seriously, they will have to strap me down and drug me to get his bottle away from me this time)
  • Take the poster Auntie Robyn made for Oscar to put up in his room to make him feel more at home.
  • Take lots of DVDs for Oscar
  • Take my yoga and meditation stuff and ensure my IPOD charger is with me.
  • Take the Ergobaby backpack so that if Oscar is hooked up to an IV I can still take him for a walk on my back and push the IV stand (I cannot push a pram and IV stand at the same time)
  • Constantly remind my ego that this is not about me and my discomfort at having no control over my environment or the freedom to make certain choices for Oscar and instead remind myself when I get anxious or angry to think about what love would do in this circumstance. In every situation, no matter how hard, the question must always be – what would love do? (Of course, sometimes when a nurse is inconsiderate of Oscar’s needs the most loving thing to do is correct her but the trick is to do it with grace and not anger). OK, I can intellectually know this – the challenge for me is whether or not I can put this knowledge into peaceful practice.

    Things I can do for Auden in my absence:
  • Update the book Auntie Lisa made about what happens when baby goes to hospital and read it to him and get others to read it to him in my absence.
  • Try to have him out to visit each day and spend some time with him in the hospital playground.
  • Remember how intelligent, resilient, intuitive and remarkable he is and trust him to find his own coping strategies.

Friday 3rd September Clinic Visit

Oscar's blood levels have crashed as a result of the chemo he had this week. He has absolutely no neutrophils and can get an infection from his own skin so we aren't having any visitors until things improve. He had a blood transfusion yesterday but it will take at least a couple of days for his levels to start rising. Last time his levels got this low we ended up in hospital as he had a lot of ulcers and developed the herpes virus inside his mouth.

He already has two mouth ulcers, including one in the exact same spot that they found the herpes virus last time. His temperature was 37.2 when I checked about an hour ago so if it hits 38 we will be heading to hospital again.

There is absolutely nothing I can do to control whether or not we end up in hospital, there is nothing I can give him to stop the virus returning. It has a tendency to do that and I am giving him an oral dose of anti-virals to try to help but it is no guarantee. All I can do is control how I respond and get myself organised in case a hospital visit is required.

Please send us some positive vibes that he is staying home and playing with his brother.