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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.

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