Yes, summers been great and we've had a lot of fun.
Sean is still doing well. I wonder whether I'm boring people by typing that, but it's good to be able to do it. He's still on daily steroid mouthwashes for Graft vs Host, but apart from that is fine. He's got a dental appointment at the hospital on 23 Feb and a routine follow-up trip to Starship Hospital in Auckland on 12 March.
We had a holiday to Castlepoint which was really great. Cameron went in the surf on a surf ski, we walked, played on the beach, and did a heap of things. We had a day at my brothers place in Palmerston North where the boys caught up with their cousins and also two nights in Wellington at a flash hotel as a special treat, took the boys to Yum Cha in a chinese restaurant, saw the giant squid at Te Papa, and (Sean's favourite and first time) played Laser Force.
Homeschooling is kicking off again, however with a seeming host of pleasant interruptions, its taking a while to really get into it. The boys had a lemonade stand at the local market and that was a thrilling opportunity for us to talk about breakeven, COGS, GP and NP!! They took $41.00 for costs of $9.90. Cameron went sailing for two days this week with the local homeschool group; only his second ever sailing and they had fantastic fun! He's out now doing his paper round (another new thing since just before Christmas) and Sean is helping him.
Thanks to those who are still checking the blog, and especially to those who commented :)
Anyway enough talk for now, here's some photos...
Be awesome,
Mark
Here's Sean on holiday at Castlepoint...
Here's Sean on the beach at Castlepoint...
Forn those of you who haven't been there (which we hadn't until mid January), here's Castlepoint...
Here's the boys at their 'homemade delicious lemonade' stand, last Saturday at the Paraparaumu Beach market, just down the road.
Here's Cameron, looking extremely happy and totally wet through from capsizing and later "sinking" their dinghy, about two thirds of the way into a fantastic day sailing on Monday (he went again today - only weather was beautiful). The day was arranged with Sailing New Zelaand and the Lion Foundation, and the young Brit guy who took it was just brilliant...
For us, the end of 2008 marks nearly a year and half since Sean had his bone marrow transplant, which was the last of his cancer treatment. As for all former cancer people, the longer the time since it happened - the better.
Aside from when we have little frights, or the increasingly less frequent trips to hospital, it all seems like a fading memory.
We still stay in contact with the Child Cancer Foundation and other families, Catherine especially, To all those families out there who are still going through what we are exiting, you have our thoughts and best wishes for 2009.
Be awesome,
Mark
Here's one of the boys...
Cameron showing off his ropes skills after CCF Siblings Camp. He was initially reluctant, but getting away on the 'Sibs camp' weekend was one of his best desisions and he really loved it. Many thanks to CCF and all the leaders and organisers.
Here's the boys with friend Liam on the CCF pirates float at the Wellington Christmas parade. They had huge fun.
Just before being pirates, they were treated to fly fishing by the Kapiti Fly Fishing club, at the Wellington Club's children's pool. They each caught 3 fish and thoroughly enjoyed the the morning! here they display a fish with fly fisherman Maurice Broome.
And lastly, here's Sean going for a drive in a 4WD V8 at the CCF Christmas Party. It was a day of torrential rain, but no ones spirits seemed dampened.
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Thursday, December 11, 2008
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Appointment with Oncologist
Posted By
Sean's Journey
Sean had an appointment with his new Oncologist today in Wellington Hospital, and all is looking very good. The doctor is happy with all his progress, his blood, and everything really. His weight is still low for his age and height, but she is not concerned about this as it is going up, and if you saw pictures of both Catherine and I at his age you'd know where he got it from!
The Oncologist also said that the further out from the bone marrow transplant he is, the more his chances increase. She was quite certain about this and it is very reassuring to hear, especially as some of the earlier advice we had received was contrary.
Sean is doing very well in himself,and while he still has a way to go with his physical confidence generally, we had a big win this week. Over the last year and a bit, we had been finding that any medical procedure, even just taking blood, would produce a huge amount of stress and he would basically "lose it". Well, bloods this week were different! There was a bit of a fuss, but with some excellent needle work, Sean admitted afterward that it "hardly hurt at all". Hopefully this will be the beginning of more of the same.
We are all excited about Christmas, and somewhat incredulous that it is here already!
Normally the good people at Ohariu Farm, nestled in picturesque rolling hill country out the back of Johnsonville, host corporate team buildings, weddings and other functions, but yesterday they hosted a dozen or more CCF families. The boys enjoyed the sheep, quad rides, horse rides and just being able to run around with other kids, while the adults enjoyed a bit of clay pigeon shooting and the opportunity to catch-up with other families and hear their latest. We had lovely afternoon tea and the day was beautiful. Standing on the balcony in the sun overlooking miles of green country climbing up to distant ridgelines with virtually nothing manmade in sight, was a tonic just by itself. Thank you very much to Jude and Greg, who own the property and gave us such a lovely day out.
We caught up with old friends and I at least met some new people; including local boy Liam Todd who seemed to be tearing around with a smile on his face whenever I saw him! www.becs.blogtown.co.nz
Home education was been progressing really well over the last few months, momentum is building. Sean’s reading in particular is really starting to come along. After such a disrupted couple of years, this is great news.
Sean himself is well. He has gone back onto a steroid mouthwash as the GVH in his mouth seemed to be picking up again. As we have explained before, this is all part and parcel.
I saw Catherine coming out of the ‘ladies’ at Ohariu Farm later in the afternoon and she looked a little dishevelled and red around the eyes. She’d just heard that one of the three years olds has relapsed. A family’s journey has taken a detour. Looking at the group of people enjoying the sun, you’d never pick there was anything unusual, but we do all share something that most people don’t. So once again, thanks to CCF and to Jude and Greg for giving us the opportunity to get together.
Be awesome,
Mark
The boys with friend Jack Griffith were content just to watch the 12-gauge shooting.
Chatting in the sun at Ohariu Farm.
Cameron is awarded ‘Most Improved Player’ in the Kapiti Coast United 11th Grade ‘Spartans’ Team. He has really come ahead a huge amount this year in participation and skill. (I was the coach for the team, and really enjoyed working with all the great kids).
Sean putting together the Space Marines that Cameron bought him for his birthday. He has wanted these for a long time and has done a great job of their construction and painting.
Cameron addressing the Kapiti Homeschoolers on the subject of ‘Coke helps win the war’ (WW2) at the end of term talent afternoon.
The boys and I went down to Wellington and had a yummy lunch at the Maranui Surf Lifesaving Club at Lyall Bay. It was one of those out of a box Wellington spring days; totally beautiful.
The purpose of the trip to town though was to visit a ‘maritime museum’ in the home of an ex-Navy diver, organised for families through the Child Cancer Foundation. The welcome was warm, and what a jewel he has there in Miramar!
Cameron was fascinated from Roger’s opening sentences! He had been holding what I blithely assumed was a cane (I had paid it scant attention), however he withdrew a sword from it and told the children (all boys incidentally) how gentlemen once carried them to help them fend off footpads and the like. He then showed the four families through his little ‘museum’. Every square centimetre of the walls was packed with interesting artefacts, photographs and well, everything really.
It did not take too long, and we moved upstairs past walls of interesting photographs and shelves of models and artefacts, to the upstairs deck where, with sun streaming in, Roger and his wife Lim and her sister, served us the most amazing and delicious and huge afternoon tea! The kids were in seventh heaven when the trifle and upside down cake arrived. Next the boys all took off and played ball and hide and seek, while the adults chatted and caught up with news as the afternoon became later.
Sitting here now in the evening, I am just full of gratitude and thanks to Roger and Lim for their generosity, and the great day they showed the boys (and adults).
Be awesome,
Mark
Here’s Cameron with Roger helping him try on a divers helmet.
The boys with friend William enjoying the museum.
Sean at his gymnastic class on Friday. His physical confidence is returning nicely.
Sean on his bed on Thursday night. What was the mischievous laugh about?
Hi Everyone!Long time, no write.But we’re back.There’s been a bit of trying to get back to normal – whatever that is.Sean is doing very well.In remission withsome Graft vs Host (GVH) disease still going on.
To recap and catch up, we came out of hospital after Sean got seriously ill with Graft vs Host of the Gut after his transplant.Then ended up back in a few weeks later with what the Doctors thought was a relapse.You can imagine what that put us through.The day we were scheduled for a biopsy, the Doctor took another look and cancelled the biopsy.It turned out to be Shingles!Never been so happy to hear such a diagnosis.You could feel the relief from everyone on the ward.
Then just after Christmas Sean developed a rash and again we thought relapse, but it was the Graft vs Host Disease.But that is a good thing with his particular cancer.We want some GVH, but not too much.The GVH evidently means that any lurking Lymphoma cells will hopefully be dealt with.After the rash came and went, it reappeared in his mouth.Sean is on a steroid mouthwash to keep it under control.
Since then Sean has put on weight, and can be seen running around with his brother and friends.It’s a wonderful thing to see.We’ve been to Australia for Sean’s Make-A-Wish Trip.Visiting Weta Studios, met Richard Taylor, been inFire Engines, ridden in very large trucks, had family visit from Dubai, among other things.And now Sean is about to have his 8th Birthday!!
A milestone for the whole family.Here is a couple of photos of the boys.And the next posting will be photos from Sean’s Make-A-Wish Trip.Thanks again Everyone for your support and continuing interest.
A Bit PS:We now have a dedicated Oncology Room at Wellington Children’s Hospital and two new Oncologists starting in October.Will be great for all the Families.There are about 32 Families who have been having treatment in either Auckland or Christchurch for the last year.They will all be able to come home!
Catherine.
Here is a photo of Sean in First Class on his way to Australia, and with his Cat - Snowy!
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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Thursday, January 10, 2008
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Suspected Graft vs. Host Disease
Posted By
Sean's Journey
Summer fun continues! We haven’t really been anywhere, only small outings, but there’s an advantage to having two houses adjacent to each other with sizeable and well laid out gardens just across from the beach when the weather gets good! I bought a small armoury of water-pistols from the Warehouse a few months ago for about $4.50 each and they have really been coming into their own on the hot days. Plenty of visitors too - Catherine’s brother Darrin and Diane, with cousins Melissa, Rachel, Joshua and Benjamin (collectively and affectionately known as the McCrowds) stayed for a few days. Great fun was had. Now we have grandparents; Catherine’s Dad, Dennis and Penny. Excellent.
The feeling is that Sean’s rash, which has been coming up and going down, is the skin version of Graft vs Host Disease. He’s at hospital today for pre-admittance so he can go to theatre tomorrow for a skin biopsy. Once we get a diagnosis it will be onto some treatment, although hopefully this will not involve prolonged hospitalisation (or even any). It’s not welcome, but we are prepared to put up with just about anything as long as it is not the return of you-know-what. We were told when Sean visited Starship late last year that Graft vs. Host was still a possibility, however if he got something it would likely be chronic and not acute – and that is what it seems to be.
In other news, the doctors are concerned about Sean’s weight, or lack of weight gain, and are thinking of putting him back onto overnight feeding via the nasal gastric tube.
Catherine has been continuity here and has done just about all of the hospital trips of late – it’s quite important that she provides this continuity of knowledge about Sean and his circumstances given the way that Sean is being seen by doctors and others in this time of turmoil in the hospital. Child cancer patients are now being managed from Christchurch, and while the doctor from down there is really nice and seems very experienced, the access to care is poor and there are some gaping holes in the administration and communication that you could drive a truck through. Not at all confidence building. We both feel for the parents of newly diagnosed children and the extra stress and hardship that they must be going through.
Be awesome,
Mark
Here’s one of me cornered on the deck in a close range attack by Cameron, Austin and Morten.
Hi and greetings! Merry Christmas and Happy New Year (for tomorrow).
Short story is that Sean is going great and so is Cameron. Sean did not have his Hickman Line removed, basically because of the way the staffing is at Wellington Hospital. He has had a rash come up around the entry point in his chest and we have been keeping a close eye on it and aside from occasional bouts of extreme itchiness (for which we have Phenagen to help) it has been no bother.
There’s three events I would like to tell you about today.
The first is the Child Cancer Foundation Christmas Party. What a great day for kids of all ages! So many activities! So many people who have been a part of our journey! So many people whose journey’s we have been a part of too. We were entertained by Frankie Stevens, well known to Kiwis as a great entertainer, actor, and long time judge on NZ Idol. He was great and the warmth in his heart was obvious. I could go on and on about what a great day it was and how there was so much for the kids to do, even down to the Police car taking kids racing around the school field where the event was held; and I mean racing! But the only other thing I want to mention is the farewell to Dr Ann Mitchell. As many of you know she has held together Paediatric Oncology in Wellington over the last couple of years despite enormous pressure and it was largely through her decision to leave, as the last doctor remaining, which has led to where we are at now – Government intervention, media scrutiny and ACTION. If Ann had not made that hard decision to leave then it is likely that the DHB would still be working her like a dog and keeping up the pretence that things were not that bad. If she gets half of what she deserves then she will have a fantastic future.
Second; we had early Christmas at my brother’s place up in Palmerston North (that is what happens when families are in different locations around the country). The boys enjoyed catching up with younger cousins Nathan and Ava.
Third; we had a very nice Christmas Day at home, starting with the stockings that Santa leaves on the bottom of the boys beds and going through a relaxed and fun day with friends Denise and Paul and their three boys. The weather changed and it absolutely chucked it down for most of the day, but it was warm and we really needed the rain desperately – it’s been so dry for weeks now with warm temperatures and most days dawning beautiful and sunny.
The Pohutakawa’s that line two sides of our properties and are all around in this area are magnificent in full bloom. For our overseas friends this is a NZ native tree that flowers each year for two to three weeks over Christmas.
We have been relaxing and having a holiday at home. Of course with the beach just across the road we have been spending time there.
My folks (Bernard and Maureen) arrive today and are staying for a few days over New Year.
Be awesome,
Mark
Here’s Sean at the CCF Christmas Party. He loved the shooting gallery (his first time firing a slug gun).
Here are the boys at Tim & Lori’s for early Christmas, with Granny & Grandad and Cousin Nathan and Mum. They’ve just finished decorating the gingerbread house with icing and lollies!
Here are the boys again at Tim & Lori’s, acting as Santa’s helpers.
The boys on Christmas morning with cap guns from their Santa stockings. I asked them to pretend they were starring in a movie and the photo was for the DVD case cover!
Here’s our Christmas lunch, with the Dacombe-Bird’s.
Here’s Cameron on the surf ski yesterday. The water is lovely and warm.
He has been doing really well.Had a CT scan in Wellington Hospital on Monday (no results from that yet but unlikely to show any cancer – if he had cancer then I think we would have known about it already).
Catherine and Sean flew to Auckland today for an appointment with Sean’s specialist who oversaw his transplant; Dr Nyree Cole.She was very pleased with his progress and has given us the official word – Sean is in clinical remission.We still have to be wary of a few things, including a recurrence of Host vs Graft Disease, however the chances of this are now slim and if it did recur it would not be as severe as last time.She also said that it was time for him to get his tubes out, and so Sean’s Wellington doctor, Ann Mitchell, will arrange this as soon as she can – maybe even before Christmas! This will just be day theatre.Gee, that would be fantastic!Make him even more like a normal boy.
Oh yes, and the Christmas tree went up yesterday.An annual family occasion.
Be awesome,
Mark
Here’s Dr Ann Mitchell with Sean on Monday.
Sean in the CT scan.The process was not easy.
Cameron put the traditional hand painted star on the top of the tree.
Hi I'm Cameron and I'm 9 years old and live in New Zealand. This blog is about Lego things I have made, and what it is like having a brother with cancer.
