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 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?

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'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)

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)

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.

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).