“This
blog lets everyone know about Sean and his family
and
their journey on the road to Sean’s recovery.
It
invites you to pray for him and it gives information and inspiration
to
the people who care and to all others who visit."
Wednesday, February 18, 2009
What a Summer!
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.
Thursday, December 11, 2008
Appointment with Oncologist
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.
Thursday, January 10, 2008
Suspected Graft vs. Host Disease
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.
Please read the previous article if you haven’t already. This entry is really just to post a few photos. It’s been a great week in Taupo, superb weather, and we are off tomorrow. Me back down south, and Catherine and the boys up north to visit family and friends for a few days. We have all had a great time.
Be awesome,
Mark
Here’s the photo that Sean asked me to put in. Him with new friend Cheetah.
Here are the boys on the tramp at the holiday home.
The boys in Rotorua at the Skyline after several rides on the Luge. They loved it!
Me with the boys after the Cycle Challenge.
Members of the Oilers and Hinges (L to R, Ray, Alan, Terry, Dermot and Dale) oil the hinges of friendship after the ride and just before the BBQ was ready.
The boys at the AC Baths. These baths are geothermally heated. It was Sean’s first time in the water in over 16 months because we’ve had to keep him away from places like that. The staff were very helpful in wrapping up his tubes and connectors with plastic and rubber bands to keep them out of the water.
Our lovely neighbours, the Fergusons from Paraparaumu Beach, at their holiday home (“bach”)
The view from their verandah (Lake Taupo is 40km long and nearly as wide; it was formed in 179 AD in one enormous blast that at the time was the largest explosion in recorded history).
There was a voucher in the Child Cancer Foundation holiday house for a “free big truck ride”, so we called and Ken arrived to take us for a ride in his big truck. Sean really enjoyed this (as did we all). If there were more people in the world like Ken, then it would be a better place. Ken lost a brother to cancer only two weeks ago.
And finally, a shot of Cameron buried at Hot Water Beach in Taupo (it’s ok he’s only faking). This is a stone beach on the lakeshore in town, but just dig your toes into the pebbles and the temperature rises! Hot (and I mean HOT) water seeps up from the geothermal activity underneath and the lake surface was steaming even in the heat of the day today. This is so normal in this area that the phenomenon is not even signposted.
A gutsy blog article title, but that is what some of the staff at Wellington Hospital have been calling Sean; “our miracle boy”. Gee it feels good to type that. Massive thanks to all of you who have prayed for so many months for this to happen.
First the update. Sean is going great. Really great. It is now 16 months since the cancer first struck, 8 months since his relapse and five and a half months since the bone marrow transplant. His last stint in hospital (a week long due to shingles) was now a month ago. He still has weekly hospital tests on a Thursday and has a round of extra tests (heart function, CT scan, etc) coming up in December. He is off all the serious medications (the immuno-suppressant finished nearly two weeks ago) and is now only on 5 preventative or milder medications. His weight is still down, however the boys are both very slight in build anyway (like I was in the distant past) and his energy levels are still rising. We still await the official pronouncement that he is in remission. He still has his nasal gastric tube and Hickman line.
We have been trying to ensure his nutritional intake is wholesome and healthy, and have him on some supplements, including Manna-Bears from Mannatech (taste like lollies but contain phytoplankton and antidioxants). We will also be starting him on Mona Vie juice as well, as soon as I get time to organise it. Now that the doctors feel they no longer need to suppress his immune system to ensure his body does not reject the donated bone marrow, we are able to start actively building it. And of course each week takes us further from the chemo and radiation treatments and allows his body to recover from them as well. We have also been encouraging exercise and fun.
I was watching him play with Cameron last night and the light was burning brightly in his eyes, as he was having (as my Gran would have said) a “daft half hour”. It was so cool. His character is really starting to both develop and also shine through. It makes me realise how much he has changed, not just because of the experience, but also because of the fact that when the cancer struck he was only 5, and now he is nearly seven and a quarter.
Cameron to is doing well, and he is so good with Sean (most of the time). He is now past 10 and a half and is really starting to grow up.
I am sitting here on a warm and still Saturday morning in Taupo, It’s 10am and I have to leave at 11:30 to catch the bus to the start of my leg of the Taupo Cycle Challenge. The challenge is 160km long and it goes around Lake Taupo. The Oilers and Hinges have three teams of four entered in the relay class and I am doing leg 4 for my team. All the legs are 40km. Many people ride the whole circuit, and there’s even an “enduro” class where they complete 4 circuits. Yes, that is 640km of continuous cycling! Scary. And most of the course is up and down. Mine is the easiest leg (thanks guys), coming back up the eastern shore of the lake and finishing in Taupo township. There’s only one big obstacle in my leg; the dreaded Hautepe Hill, which is a continuous steep hill 2.2km long. I can see myself smiling at the top of it as the grind subsides and the fact that the next 20km is relatively a cinch dawns on my mind! We are doing this to have fun and also to raise money for charity (and have raised over $10,000 so far).
We are staying at the Child Cancer Foundation holiday home for a week. A modest but well appointed and clean home, sitting on maybe not quite 2000 square metres of basically flat land with great views across the lake and Waikato River (Y-cat-o) entrance. It has a large trampoline, swings, a playground style like you’d find in a park, and plenty of run to run around. There’s a single room off the main bedroom which has an amazingly cosy feel and is full of stuffed toys – Sean was most impressed. It’s obviously suitable for sick kids and one of my first thoughts was of all the other boys and girls that would have stayed there, and how many of them would have been much worse off than Sean is at the moment. Checking the visitors book we have seen several names we know, including a couple where Catherine had (subsequent to their visit here) attended a funeral. We are so thankful for how things have gone for us and how well Sean is doing at the moment.
We are also so thankful for all the support from Child Cancer and for the people (such as The Professionals real estate agents) who make this holiday home possible. After the year we have had, we would not have been able to justify spending money we don’t have on a holiday like this.
Both the boys were really excited to arrive here yesterday tea-time. They immediately got out of the car and started running around excitedly. I booked this week back in February, before the relapse, knowing that by late November, we’d either be right, or we wouldn’t. Well, we are right, and I have a feeling that not only is this week going to be great fun for us all, but also that it will stand like a milestone between the challenge of 2007 and the remainder of our lives.
Tuesday, October 30, 2007
An uneventful eventful week
Wow, another week has gone by.On the one hand it has been beautifully uneventful and on the other hand it was been quite a week.
Uneventful because Sean has been doing great.The only thing that remains of the shingles is a red scab and a couple of tiny marks which may be scars.If they are little scars then they can just join the other ones that he has received over the last 16 months.There haven’t been any other niggles at all and he seems just a little more animated and lively than he was even just a week ago.He seems quite happy most of the time.
Catherine went to friend’s 40ths down in Christchurch over the weekend.Helen and Paul both celebrated their 40th together.She enjoyed her trip away, although she did lose her voice and seems to have come down with something nasty.Any other time and I would have gone too, but Sean is still delicate and not yet to a stage where we are happy to leave him with anybody else for a couple of days, so I stayed home and we had a boys weekend together.It really was great and I even got the multiple medications at five different times during the day off down pat.I’ve noticed that since we have had Sean home I have been spending (investing?) more time with the boys than ever before.Like I said many months ago; I’m looking for the good to come out of this.Sean said he really enjoyed the fireworks display I took them to on Saturday night (we have been every year since he was born).Cameron has been very helpful around the house and Sean has been following his lead!
Catherine wrote a substantial blog entry late last week, and she emailed it to me (what did we do before technology!) and I thought, “Great I’ll post it tomorrow” which would have been Thursday.Well before I could post it we had some more news from the hospital; Sean’s doctor, Dr Ann Mitchell has resigned.Big shock.Many of you will be aware of the challenges facing Wellington Hospital in trying to keep the children’s cancer service operational and how these challenges were exacerbated in July when one of only two paediatric oncology specialists resigned.Well, now Anne’s going too and that really let the cat among the pigeons as they will have no more qualified doctors come January.So, on Thursday morning both our cell phones were ringing with the media wanting comments.Catherine did a great job talking to them (among the two of us, she is now leading up this area) and we had news crews from TV1 and TV3 here and we were on the main evening TV news on both channels that evening.Once again Beth from TV1 bought along Lego for both the boys – thanks Beth, you are very popular!So, some excitement with more cameras at the house, but of course our spot was small as the story was about the situation here in Wellington, not us.It’s very interesting that half a dozen news organisations including two TV stations ring us for comment and background material whenever something happens. Here's links to TV1 and TV3 news stories as they were aired.
We are concerned with what is happening to the service here in Wellington, but mainly for other parents who are about to make this gruelling journey, as we are now largely through it.It’s not a good thing having Ann leave in January as she knows Sean better than anyone else; however it shouldn’t impact on us too much.Have to wait and see.
Yesterday was the first day of home education for both the boys.I took them and we did maths in the morning and investigated time and calendars in the afternoon.Great fun!I’m looking forward to many more days like that, and no doubt Catherine is too – as soon as she gets over whatever it is that has laid her low at the moment.
I’m now in training for riding around Lake Taupo with the Oilers and Hinges at the end of November.We are a group of overweight, middle aged, lycra wearing Dad’s who got together to oil the hinges of friendship and along the way enter the Lake Taupo Cycle Challenge and raise money for two worthy charities – the Child cancer Foundation and the Mary Potter Hospice.The group first got together in February and I can remember thinking it would be a good challenge for me, although I had no idea what the year was to have in store.In late February Sean relapsed and we have been back in hospital pretty much continuously since then, up until recently.One thing I did do way back then was book the Child Cancer Foundation holiday house in Taupo – so we have a week in Taupo coming up at the end of the month!Hopefully I won’t be too sore from the ride to enjoy it!Sean is really looking forward to this week as he loves it up there (all the volcanic activity).And I think we really deserve it too.
It’s Tuesday night and I think it is fair to say that we had a very relaxed and restful long weekend.Both the boys have been enjoying being at home.Both the boys are really having fun making amazing things out of their Lego.
Sean has been great; the marks from the shingles are now almost gone and aside from a few bouts of itchiness since the last entry we have not had any leftover niggles from the experience.
One good thing is that Sean has been expressing a lot of interest in physical activity.So, he’s been joining Cameron and me running around on the lawn playing soccer, chucking the rugby ball about and the like.He’s also been a lot more active in indoor rough and tumble games.Great to see him getting this confidence back, as his road to regaining his strength has also been a long one.When he first became sick and very nearly died, his muscles wasted away to almost nothing in the Intensive Care Unit and ongoing chemotherapy and treatments and just being immobilised by the tubes have meant he is still quite careful and restrained in how he moves about.Which is why it is so great to hear him asking to go outside and play soccer!
The boys have, finally, moved into their bedroom.Sean told me last night that “I really love being in my room again Dad”.The room looks just awesome and huge thanks have to go to Nikki who helped so much and to Steve and Sarah at www.kidscapes co.nz for the awesome and huge wall mural.It’s so big it’s hard to take a decent photo of it!
So, all going well here.The next month is quite busy and then of course we get close to Christmas, so i was very good to have a quiet long weekend.
We were hoping Sean would be able to come home on Monday, but the rapid early improvement in the shingles didn’t continue and it was still too angry to allow him to leave.By today, however, it had gone down in size and ferocity and so he is OK to come home – on a stepped up (5 times a day) programme of oral anti-virals.
Despite their rapid and highly visual spread, Sean’s shingles have not caused him any significant amount of pain or discomfit.This has been one more bright point.
Everyone is glad to be home.The boys are playing a game together on the lounge floor as I type this.
Now we keep an eye on everything, while we head back on the track to a healthy future.He has to go in on Friday for his next check-up.
“Our six year old son Sean was a
perfectly normal and healthy boy until he suddenly developed cancer in August
2006. It was so aggressive that in less than a week he went from being a little
off colour to being on life support in Intensive Care and the family was flown
by Life Flight to Starship Hospital where we stayed for nearly three months
before Sean was well enough to transfer back to Wellington.He has an Anaplastic Large Cell Lymhoma, which is a Non-Hodgkins Lympoma
and he has a serious complication in that the disease was also detected in his
Central Nervous System. This disease is treatable and curable, but he is also at
high risk of a recurrence. He came very close to dying in the early days, but
responded extremely well to the chemotherapy and was declared in remission just
before Christmas 2006.He
went onto “maintenance” chemotherapy in January 2007 and everything was
going very well until mid-February.
Tests in the second half of February
confirmed that he had relapsed – the cancer had returned.He started a relapse protocol of chemotherapy on 1 March 2007 – this
protocol will see two intensive chemotherapy cycles each lasting about a month
and then a move to Starship Hospital for a very intensive round of chemotherapy
and also whole body radiation, which will kill off all the cancer.He will then receive a bone marrow transplant to help
him recover. Sean’s brother Cameron, aged 10, is a perfect bone marrow match.
Without
a doubt this is the biggest challenge our family has ever faced, and as
believers in the power of prayer we are asking all of you to keep Sean in your
prayers and positive thoughts. We need to be strong, we need Sean’s medical
team to be at the peak of their powers and we need hundreds and hundreds of
people to pray for Sean and see him as he will be – a beautiful and talented
boy in full health with his whole life before him. Thank you so very much.”
Aug 6: Stomach pains. Weight loss.
Admitted to hospital
Aug 10: Admitted to Intensive Care.
Doctors cannot find the problem
Aug 11: Life Flight Transfers Sean from
Wellington Hospital to the Starship Children's Hospital in Auckland
Aug 15: Doctors discover Sean has
cancer and Chemotherapy begins immediately!
Next 2 weeks: Sean hovers between life
and death, heavily sedated and relying on a ventilator to breathe for him.
Repeated high fevers rack his body as his medical team fight to bring his
condition under control. Aug 21: Still very sick and too weak to
move, but now breathing on his own, he moves from Intensive Care to the Oncology
Ward.
Aug 31. Sean is in a lot of pain with many ailments, but is still starting to move a little on his own and is well enough to start the first of 9 intensive month long chemotherapy cycles. Sept 1: Today is Sean's 6th birthday,
he is excited, but in pain and tires quickly.
Sept 21: Sean is not eating, he is losing weight, but still spends his first night out of hospital after 46 nights admitted, with his family in Ronald McDonald House.
October: In and out of hospital. Two full cycles of Chemotherapy. Four separate
pain killers on high-dosage. His white blood cell count diminishes as a result
of the chemo. Unable to fight infection, he soon lands back in hospital.
Oct
14:
Sean transferred to Wellington Hospital, family returns home!
Oct
17:
Third major chemo cycle commences.
Nov 10: Readmitted to hospital for IV anti-biotics, high temperature.
Doctors fear infection.
Nov 13: More Chemotherapy. Several blood transfusions to stabilize low
blood cell count. High temperature under control.
Nov 20: Starts 4th major dose of Chemo with IT and IV Chemo. Out of
hospital for one night, but readmitted the next evening with chronic vomiting
and diarrhoea - doctors concerned.
Nov 25-27: Vomits up Nasal Gastric tube three nights in a row. Mum and dad
and staff have to hold him down to get it back down
- horrible for everyone!!!
Nov 25- 13 Dec: White Blood: Cell count stubbornly close to zero. Bone
marrow struggles to recover from intensive Chemo, with help of daily GCSF
injection counts suddenly shoot back up and he leaves real danger zone around 13
December Very susceptible to infection so his friends all need to be kept away.
Back to hospital repeatedly for blood transfusions. THINGS ARE LOOKING UP AT
LAST!
Dec 1: Sean's senior doctor (Dr. Ann Mitchell) says "his cancer is in
remission, as far as we can tell". More tests to come, but fantastic
news.
Dec 5: Sean discharged! Sees his new tree fort for the first time (much
excitement).
Dec 6: Santa's elves deliver first gift of the 12 days of Christmas.
Dec 15 & 17: Sean and Cameron on the TV1 6pm news!
Dec 18: Back to hospital for the 5th major dose of Chemo.
Dec 25: A family Christmas at Uncle Tim and Auntie Lorraine’s place.
Jan 1: Temperature rises, departs for hospital at 1am on 2 Jan for another 2 days.
Jan 15: 6th major chemo cycle starts, the 2nd of the Maintenance cycles and the 8th cycle overall. This cycle is different as Sean does not stay on the Ward overnight, he is able to go to nearby Ronald McDonald House.
Jan
20: Sean discharged for 12 straight nights in a
row; a record!Then high temperatures mean he is readmitted for IV
anti-biotics.
Feb
7: He’s doing great, needs blood transfusions.Couple of funny spots have come up – need to get them checked out.
Feb
12: Chemo delayed; Sean’s spots have increased
and he is now in isolation.Painful
lumps start appearing ion the back of his head, temperatures remain high after
IV anti-bacterials and anti-virals – what is going on?
Feb
21: Sean goes to theatre and has several tests,
including the removal for biospsy of a lymph node.He’s very sore after theatre and has difficulty walking, it’s hard to
know where to hold him to lift him.
Feb
27: The diagnosis is complete – Sean has
relapsed, the cancer has come back.Can’t
believe this is happening.We’ll
have to go through it all again (only this time better prepared).
Mar
1: Commences first major cycle of new intensive
chemotherapy protocol, permanent side effects probable.Expecting lots of hospital time.Sean in great spirits.
Mar
24: Cameron’s 10th birthday party,
Sean very upset as he develops a high temp and has to be rushed to hospital just
as the kids start arriving.Cameron
is a perfect match as a bone marrow donor.
Mar
29: Sean discharged, needs frequent blood
transfusions and white cell oounts remain stubbornly at zero, so needs daily
painful GCSF injections.Other
than that; he’s in great spirits!
Apr 13:
Sean readmitted for 2nd relapse protocol chemo cycle
Postcards
Both the boys are fascinated with travel
and are very interested in geography and different countries.
Many people from
around the world have been sending the boys postcards to help brighten their day
Mailing Address
Sean & Cameron Ternent
PO Box 1702, Paraparaumu Beach,5032 New Zealand
Please include your
e-mail address, so eventually we can reply.
What You Can Do to Help
We've become acutely aware that the kids on the
oncology ward and many other sick kids in the hospital need blood. They are
always asking for donors. One of Sean's transfusions had to be a slightly
different blood because there wasn’t any other available, and he then had to
have antigens to help him cope with the new blood. And this is not an isolated
case. So blood and platelets are in great demand,and they are always trying to
get enough for the blood bank.
So if people want to help, would they consider giving blood or platelets.
Platelets takes longer – possibly about two to three hours.And please ask
friends and relatives. Because there are a lot of sick
kids out there who need it.
What a Summer!
