“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."
Monday, June 25, 2007
Could be going home earlier than expected
Sean was slightly better today. He slept well last night and after the morning doctors’ visit and medications was able to leave from about noon till 8pm. Catherine took the boys to the Zoo and also the Butterfly Centre. They had a great day. Sean was a bit perkier too and asked for some water and food at tea time – he had 3 or 4 plain rice crackers. It is very good that he is showing interest as it is his eating that we would all like to see improve now.
He had an hours tummy pains this morning, but apart from that was fine, is not on any painkillers other than Panadol and did really seem to enjoy getting down to Ronald McDonald House and away for the day. The nurses and staff have all been wonderful; I think it was just a spot of cabin fever.
The consultant, Dr Lockey Teague, said this morning that things are going well and if they continue at this rate we could possibly be home as early as the end of the week. This is great as we had understood that at the very minimum it would be 6 weeks (11 July) and that we should expect 8 weeks away (25 July), all going well.
Sean is not out of the woods yet but all going well the next steps are continued monitoring of his recovery and the GVH (graft vs. host) disease. His immuno-suppressants (which he has twice a day orally) will be reduced as fast as possible to give the Graft vs. Lymphoma effect the chance to kick in should there be any cancer cells remaining.
Our room, or apartment more accurately, is great and will be even more useful once Sean becomes an outpatient, which could be from tomorrow. We still have to keep him away from any bugs and we know that Starship Hospital is full at the moment with many such ailments. We have our own kitchenette and are pretty much self-contained which makes living much easier than it was last year when we had a small room and used the (lovely, spacious and friendly) communal facilities. Of course this means we don’t socialise as much as we did last time either, but the staff here are great and we have met many nice people.
There goes the rain again; absolutely hammering down. I can hardly see the Sky Tower. It’s cold, but the air does not have the same bite that it does down our way, or further south.
It was my Mum’s birthday today! Happy Birthday, Mum.
Be awesome,
Mark
Here are the boys butterfly hunting. Sean’s new fluffie is called Wolfie and came from the Zoo. CCF have organised that we can visit the Zoo everyday this week if we are able.
With all my worldly knowledge, I’d pick this as either a moth or a butterfly. Too late to Google the difference!
...to start my (and I'm sure yours) week with. I'm so happy for you and praise God for this wonderful blessing he has bestowed. Our prayers will continue. Happy B'Day to Mark's mom!!! What a great present.
In Christ's Love,
Aidan, Traci & Michael Porter
Canisteo, NY
wow, what fantastic news, you must all be sooooo pleased with the progress, i have let everyone know at work of the progess you have all been making, and they send all their love and best wishes.
mmmmm not sure if its a butterfly or moth????
Hi! Sean
Its great to hear you could be going home earlier than expected. I knew you would pull through.
I love the butterfly & your new friend Wolfie he looks nice & cuddly. So glad you guys are starting to have some fun especially at the zoo and its so good to know that your Mum & Dad & the rest of your family can start to breathe a little easier, now that you are on the road to recovery.
Well thats all for now
Take Care little Buddy, God Bless you & your family
Best Wishes
Elizabeth Rose & Family
That's fantastic news for you all, and glad to hear (from aunty dianne) that you enjoyed the basket of goodies! (and cameron especially enjoyed the chocolate...)
The butterfly place looks cool, we haven't made a trip out there before, I think we just might do that soon though. Alex thinks it's a moth!
Blessings, Edwards family;Philip,Kim,Sam, Alex, Isaac.
“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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