“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."
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.
Tuesday, January 15, 2008 - From Lea - Bianca's mom
Posted by Anonymous
Hi there,
Just stopping by to say hi. How are things now? Was Sean admitted? When are you getting the results? Have you met the backup paediatrician? I'm not too impressed that he is the backup as he doesn't seem to enjoy working with kids much. Can't wait for the locum to arrive.
Just wondering how things went with Sean in the past few days. He is still in our prayers and thoughts throughout the day. It looks like you are having great fun in the sun. Sure wish it was summer here too.
Wednesday, March 26, 2008 - Praying for Sean and his family
Posted by From Edinburgh
My prayers are with you and were particularly so on Easter Day. I pray for strength for all of you and I pray continually for Sean.
Once, when my daughter was sick I went for a walk and ended up at the Sacred Heart Church near our Sick Children's Hospital. I walked down the side aisle and there by chance I found a statue of a man holding a small child. A plaque said he was St Anthony and credited with miracles including healing children. I got through that day and returned to that spot at my darkest moments and also on better days. My prayers have again been to St Anthony - this time for Sean .
I do not know how you are Sean but I am always praying for you and your lovely family. I hope and pray for the very best for you and for good days.
“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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