Sean went to theatre today and had his Hickman Line removed. This is a major positive milestone for him and for us all. His Hickman Line was fitted when he first got cancer, back in August 2006 and has been his constant companion since – 16 inches of plastic tubes dangling from his chest, and internally placed into his artery and ending near his heart. The fact that the doctors have taken it out, means that they do not now expect Sean will need more IV treatment. It also means that this entry to his body (an infection risk) can now be allowed to close and heal. All in all, it is a significant milestone on his journey to full health.
Over the last couple of months Sean has shown a steady improvement in his general fitness and health. We have had several incidents of mild Graft vs Host Disease (body rejecting donated bone marrow) of the skin, especially back in January and February, but these periods of intense itchiness gradually became less frequent. There are still some signs of GVHD in his mouth, but obviously not enough to concern the doctors. In fact a little bit of GVHD is exactly what we want as children who experience that after a procedure such as Sean’s have a lower rate of relapse.
His hair has grown back, and he even had a haircut this week!
His nasal gastric tube disappeared some time ago. The doctors have been concerned about his lack of weight gain (an indication of ongoing mild GVHD of the gut) and they asked us to put him back on to overnight feeding through the tube. Well, the first night Sean threw up the whole tube, despite being on a low flow rate. We decided not to have the tube replaced partly because it causes so much stress to insert it, and partly because we felt we could feed him up! So we did. We encouraged him to eat and one startling realisation was that he had simply got out of the habit of eating anything. No wonder he wasn’t gaining any weight. We also helped with supplements, notably Mona Vie – a juice very high in good stuff. He has put on a bit less than a kilo since the New Year.
He may not be gaining much weight, but he has gained height – he has sprung up over the last few months.
Sean went back onto fortnightly visits to hospital about 6 weeks ago, and also a quarterly CT scan. The last CT scan was 2 weeks ago and everything was clear (they carefully measure the size of his organs as an early sign if the cancer was returning would be enlargement of the spleen).
So, what next? In the main just getting on with life as usual and encouraging Sean to eat, move and get back on with life. Cameron has taken up soccer again (I am the team Coach!) but Sean declined – we think he’s just not physically confident enough yet. Sean participates in all the big water pistol fights we have and the like, but is still gaining strength. Sean does really enjoy his gymnastics. From today we go to two monthly hospital appointments, four monthly CT scans and monthly blood tests. He has an appointment in Starship Hospital on 23 April. We are also expecting approval any day for Sean’s wish from the Make A Wish Foundation – a trip to Australia Zoo (now that will be welcome).
We are not out of the woods yet. It’s been 9 months since the bone marrow transplant and we really need to get to the 2 year point. There’s a significant probability that he will be fine, but there are still things that can spring up.
We are all VERY happy that the line is out, at last. We popped into the Sushi Train on the way home at Sean's request, as a treat and as breakfast because he could not have anything prior to theatre of course. Getting back into the car, Sean said "I'm glad that beeping line is gone."
Wellington Child Cancer Services
The headline in the Dominion Post yesterday was how a solution has been found to the problem of providing child cancer services in Wellington. Two doctors have been recruited from Germany and arrive in October (so patients and families will continue being sent out of the region until then) and the DHB is still looking for a third pediatric oncology doctor. The Children’s Hospital will also end up moving into larger premises. This is simply great news. Not for Sean, but for all the other families who have yet to go through what we have been through and for the people in the Wellington region in general. Many thanks to everyone who did something about this when we asked for help last year – we are very pleased with the DHB’s action, however the political pressure that was brought to bear once politicians were made aware of the situation by ordinary people was absolutely crucial in motivating the DHB to rectify the situation satisfactorily (in our opinion). The nurses are also very happy with the outcome.
All in all, a very good week.
Mark
This is Sean about 2 weeks ago at Cameron's 11th birthday.
Here's a shot from just before theatre early this morning showing the Hickman Line
And here's a shot about 30 minutes after theatre, with Cameron showing the line to a still a bit groggy Sean.
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