“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...
Hi to Sean and the whole family,
Its Pip here from Make a Child Smile a few years back. I have been living over in Scotland for a year and half and just returned and was thinking of you so thought I would see how you are doing. And WOW... Sean, you look amazing and so healthy, I am so happy to see how well you are doing. Your mum and dad and Cameron must be very proud of you. And all of you for going through this experience. Kia Kaha to all of you.
Luv Pip
piphickey@gmail.com
Hi, I am a Hospital Play Specialist at Christchurch Public Hospital. I am currently working with a child who will be having a Hickman Line in one week time. The photo on here is fantastic and would like to seek your permission to show the child what it will look like.
Thankyou for your time and great to see your wee man is doing well
Hello - We are homeschoolers in California. My 4 yr old son had a BMT for Wiskott-Aldrich Syndrome and now has pretty bad skin GVHD. He's on about 7 medications. I was just wondering how your son is doing and if you had any recommendations for controlling his skin GVHD.
aimeemcnally@gmail.com
davidmcnally.blogspot.com
Your biggest fan is waiting for a recent update on you all. My e mail changed as we had to move ( so I can be reached at kinley44@gmail.com. I also got a new computer and lost my addresses. so send me your friday updates to the new e mail.Take care all..
Kristy
“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.
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