Wednesday, August 20, 2008
We're Back!
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 with some 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 in Fire 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!
Friday, April 4, 2008
Hickman Line Removed
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.
Settling down for a BBQ dinner with the McCrowds
The main house.
Sunday, December 30, 2007
Merry Christmas!
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.
Wednesday, December 12, 2007
Starship Visit
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.
Sean looking relaxed.
Finishing touches
Thursday, November 29, 2007
Some Photos for You
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.
Saturday, November 24, 2007
"Our Miracle Boy"
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.
Now, on with the next steps of Sean’s Journey.
Be awesome,
Mark
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.
Be awesome,
Mark
Here's TV1...
and here's TV3...
Tuesday, October 23, 2007
Restful Long Weekend
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.
Be awesome,
Mark
PS – Here’s some shots of the boys a home
Wednesday, October 17, 2007
Sean at home
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.
Be awesome,
Mark
Sunday, October 14, 2007
Blustery Weekend in Hospital
Sean has been pretty relaxed about his weekend in hospital. It’s an easy routine compared to what we have been through previously. On Friday evening when I went in to take over from Catherine, his red spots had developed into something of a large rash across one side of his tummy. By Saturday morning I noticed a definite reduction in how angry the whole area seemed. The anti-viral (Zofran) seems to be working.
Catherine went to Steve and Lisa’s wedding on Saturday afternoon. She said it was great. A blustery Wellington day.
Then Catherine took over from me so I could go to dinner at Geethals. Geethal is both a client and a friend and he has been doing authentic Sri Lankan banquets for all the members of my BNI business networking group and their partners. Cameron came with me (at Geethal’s invitation) and he had a great night. He said the food was “absolutely beautiful” and he enjoyed hanging out with the teenagers who were serving dinner and cleaning up. He had dinner with 22 adults and he was an awesome young man! It was a most enjoyable night out.
Sean has had some bouts of nausea (likely to be from the Zofran) on Sunday and has gone onto anti-nausea medication. He’s also pretty much stopped eating again, so Catherine had him back on the nasal gastric feeding tube last night. It’s great that Sean’s shingles, nasty looking though they are, have not been giving him any pain or itchiness at all.
I felt really shattered this morning, just a reaction to the week I think. I missed an Oilers and Hinges bike ride I had wanted to go on, but to be frank felt I needed to spend time with Cameron and also by myself. I came in again and took over late this afternoon to spend Sunday night with Sean, so Catherine can go to a meeting tomorrow that’s been arranged by the office of our local National list MP (Nathan Guy) between the National Associate Spokesperson on Health, Child Cancer Foundation and Catherine.
Kristy asked via a Comment about the sports Cameron is playing. Well, he’s finished soccer for the year and so is between activities at the moment. Knowing we had the bone marrow transplant and time away in Auckland coming up, we only put him into soccer this year. I’m going to be investigating tennis this coming week. Cameron has been spending time with a few of his friends – which is good.
Be awesome,
Mark
Here’s one of Sean. I asked him for a serious photo. He said "ok" and promptly ran away to get his two of his animals
Here’s one of Steve and Lisa on their warm but blustery wedding day.
And here’s one of Wellington city.
Thursday, October 11, 2007
Quite a Fright
Yes, that’s pretty much what this week has been. We were keeping an eye on the red spot that I mentioned in the last article; and Catherine noticed another one starting to come up, so she took him in to hospital on Monday morning to get it checked out. Sean’s doctor took literally one look at it and said “we need to biopsy”. At the moment there’s pretty much only one thing that we would biopsy for.
They couldn’t get Sean into a theatre that day, so he was booked in for the biopsy on Wednesday.
We had two days to wait, and then the time it would take to get the result.
Was it the cancer returned?
To say we were scared would be the least of it. But we were in clear agreement about one thing – now was the time to start to act. With the immune-suppressant having just started to be reduced; we had already talked about what steps we could take to rebuild Sean’s immune system. Things we could start to give him that we had been advised not to while he was on the immune-suppressants. Ways in which we could improve all our diets to help Sean along the path to health. We also talked again about Mexico.
Then on Wednesday Sean was in to the hospital very early (he took a blanket and pillow in the car) with Catherine ready for theatre, but by midday they were still waiting to be called. Then Catherine rang again to say that Sean’s doctor had been back in and had a good look at Sean and from the change in the spots she was pretty certain that it was shingles. So, she had cancelled the biopsy and instead they would take some swabs. The relief that went through me when Catherine said this was huge.
But the suspicion of shingles meant that Sean needed to go onto IV Anti-Virals and so he was admitted. Cameron and I took clothes and some extra supplies in. Sean was in great spirits.
And that’s how it is this evening - Sean and Catherine settling in for their second night in hospital; Cameron and I at home. The boys return to home education this week has got off to a slow start. Catherine and I have had a fright, but just at the right time to help us focus back on all the things that we can do to help make a difference now that he is coming off all the drugs.
Be awesome,
Mark
PS – Thanks for all the comments and kind words; appreciated by us all.
Guess who was just ambushed!
Sunday, October 7, 2007
Overdue Blog Post
Hi and sincere apologies for the amount of time since the last entry.
It’s also been good to just be out of the hospital system, at home, with spring coming on.
In a nutshell things are going well. His progress is upwards, balanced by a couple of small niggles. Since the last entry Sean has been going for check-ups and blood tests to the Ward twice a week, but from this week onward that’s been reduced to once a week. He is still on three daily medications the major of these by far being the immuno-suppressant (Cyclosporin). Also this week, we began the process of progressively reducing the Cyclosporin. Each week his progress will be reviewed and a decision made whether to reduce the dosage a little bit more. He finished with the last of his steroids two weeks ago – he was weaned off them over a period of several weeks just like the Cyclosporin will be.
I’m sitting here in the lounge with a strong coffee and the new laptop on my knee with the build-up to the New Zealand vs. France game on the TV. It’s 7:30 in the morning – half an hour to go - and looking outside broken banks of cloud are scudding by in the strong onshore northerly. The air really is thick with the smell of fresh air and sea, and the sound of the wind in the trees and the surf on the beach.
The boys are asleep. We were up quite last night! Watching a TV movie and chatting away, after a day when Catherine and I got into the garden – I was spreading a lot of mulch and feeding the citrus trees, while Catherine was planting out some bushes and also preparing to plant apple and cherry trees.
Cameron has had a sore throat for a couple of days now, but apart from that is well and doing good.
Sean was sick a couple of times last night, not sure why, just something to keep an eye on along with the spot that has come up on his tummy.
He still has both his tubes –his Hickman and his Nasal Gastric. We haven’t given him an overnight nasal gastric feed for about a month now and he is maintaining his weight – although he is losing the steroid cheeks! He’s eating little bits and still thinks about food a lot. We were just finishing tea last night and Sean was discussing aloud what he’d like for tea the next night!
Sean is also slowly growing his hair back. It’s still short and thin at the moment but is thickening up and also it is darker than it was! Apparently it is not unusual for children to grow back their adult hair – and my hair darkened from blond as I grew up.
We have had a bit to do with the review of child cancer in Wellington; especially Catherine. This week saw a decision from the Capital and Coast District Health Board to commit to maintaining a full service in Wellington – subject to conditions being met. This is a very welcome decision, but there is still danger of losing the service and we need to now keep on to them. I’ll go into more details soon.
Both the boys have been good. They really are good lads. I was thinking last night of how much they have both grown in this last year. Cameron has become a big help especially. They are both developing as great people and we are very proud of them.
Be awesome,
Mark
Here’s a photo of a good friend, Steve Gibson, who came to see us. He lives in Melbourne and is one of the people who has been asking what has happened to the blog!
Here’s the boys and others at the Westpac Stadium in Wellington, meeting players from the local Phoenix soccer team. Terry Serepisos, who owns the team, hosted 60 or 70 Child Cancer family members to a view of the game from a corporate box. Great game (Phoenix won 4-1) and great also to meet up again with some of the other families.
Finally, here’s a photo taken just a few minutes ago, in the boys beautifully redecorated room. Even though it is finished, Sean has not slept in it yet, as he is still sleeping with one of us each night and will be for a little while longer until things settle more and he gets his tubes out.
Thursday, September 6, 2007
All going well
Another visit to hospital today and all is going well. One of Sean’s steroids was halved for the third time; blood pressure is OK. He still has his ups and downs. He is eating well during the day, still interested in food several times a day, which means we have not been giving him the liquid feed at night, which gives his stomach and gut a rest – more natural than pumping liquid feed into him all night long. He also sleeps better when he is not on the overnight liquid feeds.
I’ve been in the local papers twice more in the last week and a bit, making the front page of the Observer today with a call to action about the child cancer situation in Wellington.
I also went to see our electorate MP, Darren Hughes last Friday, but didn’t feel he was really very interested. He is going to ask the DHB to keep him up to date with events, so that is good as it will help show the DHB that they are being watched. One thing Darren Hughes did do was show me an email from the DHB to people such as himself saying that the DHB were committed to keeping child cancer services in Wellington. Darren thought this was positive, and he is right, however there is a huge BUT after the statement and so once again my concern is that the public is told the right thing and then later when the fuss has died down, the solution is enacted and the devil proves to be in the detail.
Thank you to all those people who have taken the time to write letters.
Cameron was in a radio commercial today. It was for the Oilers and Hinges bike group I am involved in – 10 middle aged guys in lycra raising money for charity. The group is away this weekend up in Taupo doing a reece for the race. I’m looking forward to it, and have retrieved my golf clubs from the garden shed in preparation!
Next visit to the hospital is Monday.
Be awesome,
Mark
Monday, September 3, 2007
Close encounters of a furry kind
We took Sean and Cameron to the Zoo today, where they had a “Red Panda Encounter”; a part of Sean’s birthday treat. It really was a treat. The boys went into the panda enclosure with the keeper and the male panda sat on Cameron’s lap while it ate! Sean too fed them by hand! We were very impressed with how close they were able to get. The boys also fed the female panda, but they had to do that in another part of the enclosure as the zoo suspects she is pregnant and she is keeping to her private areas.
Prior to that, Sean had been for his checks and blood tests. All is going well and one of his steroids has again been halved. His blood pressure is a little bit up again, and so that will be rechecked on the next visit (Thursday).
Our thoughts are with the Ferris family, who posted a comment on Saturday’s blog entry.
Our visitors have now departed. It was great having everyone here for the weekend. Grandma and Mark from Auckland, Uncle Nigel, Auntie Joanne and Anika from Hamilton, Granny and Grandad from Feilding and Uncle Tim, Auntie Lorraine, Nathan and Ava from Palmerston North. Also, Sandy and Tom from Auckland as well.
Be awesome,
Mark
