Sean's Journey - All going well

Sean's Journey

“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, 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

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Comments

Friday, September 7, 2007 - Untitled Comment

Posted by hsmom210

So good to see Sean enjoying a sandwich! (and it looks like what we call here in the states on an onion roll?)
Glad the steroids are also being halved...his GVHD must be much improved?
Still praying...so glad you all can be home together now. The Born Family

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Saturday, September 8, 2007 - Looks good

Posted by ThePortersOfNY

That sandwich sure looks good. We're very excited to hear of your progress with the steroids and are praying for you each and every day.

In Christ's Love,
Aidan, Traci & Michael

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Tuesday, September 11, 2007 - Hi

Posted by Kinley

So glad to hear all is going well!
Kristy

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Saturday, September 15, 2007 - Untitled Comment

Posted by Isa

I am visiting this site since a few months and this is my first comment. I got the link via postcrossing and hope you got my card from Germany.
I prayed for you and I am so happy for you and your family that all is going fine. :-)
Happy belatet Birthday brave Sean.
Isa

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Monday, September 17, 2007 - Untitled Comment

Posted by Anonymous

I will pray for sean.

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Thursday, September 20, 2007 - No News for awhile

Posted by Liz Austin

Im hoping and praying that no news is good news

Hows things?
Liz

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Friday, September 21, 2007 - Worried

Posted by Kinley

I am just checking on you all. No new updates and no answer to e mails. I am praying all is well and that we will hear from you soon.

Kristy

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Friday, September 21, 2007 - Email Answers

Posted by ThePortersOfNY

I did have email contact with Mark earlier in the week and he has a new computer with Vista on it and it has been giving him problems with the blog. He did say that they were just very busy getting everything done and sorted after a year of not knowing what was coming next. Hopefully this will ease some worries for everyone.

In Christ's Love,
Michael Porter

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Saturday, September 22, 2007 - Untitled Comment

Posted by hsmom210

Thank you (Michael Porter) for the update...have been really wondering. Glad all is ok. The Born Family

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Saturday, September 22, 2007 - Untitled Comment

Posted by Stef McMurchie (Hooper!)

Wow. Mum (Cath Hooper) just emailed me the link to your blog, which I've been wanting to look at for ages. You guys are amazing, I really admire the huge effort and commitment you're all making as a family, and your positive thinking and belief in prayer :) I have been/will be praying for you and thinking of you all xoxo

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Sunday, September 23, 2007 - Untitled Comment

Posted by Lyric

I added the Pray for Sean button to my blog. God bless your family!
Jen

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Friday, September 28, 2007 - Update

Posted by Cherry

For those of you wondering how things were, like I was... I also had an email from Mark on Wednesday. All is well. The family is enjoying the normality of having Sean at home, away from all the cancer stuff. Mark has needed a break from the blog but plans to post an update soon when he has a new photo of Sean, "with his hair coming back and cheeks receding." :-)

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Sunday, September 30, 2007 - Hope all is ok..

Posted by Anonymous

From Kate

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Monday, October 1, 2007 - Enjoying Time at Home

Posted by Anonymous

Hope you are all enjoying some normal family life. It has been a lovely warm and sunny day here in Edinburgh, but the leaves are turning and autumn is clearly on its way. I know this means you will be enjoying some nice spring days and the lovely optimism that it brings with summer all stretched out ahead of you. How lovely that Sean is home with you now too. Enjoy your break from the blog, your whole family needs to recuperate. Be sure that even when we don't hear from you we pray for you and Sean every single day.

Love and prayers from Scotland.

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Tuesday, October 2, 2007 - thanks for update

Posted by Liz Austin

Hope you are all doing well
In my thoughts

Liz

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Friday, October 5, 2007 - from murray and sonia

Posted by Anonymous

so glad to hear all is well, enjoy your time together and we look forward to seeing you all very very soon. love from murray and sonia
xxxxx

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Saturday, October 6, 2007 - Tagged!

Posted by ChessBoy

I tagged you!

CessBoy

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Saturday, October 6, 2007 - Update

Posted by Cherry

I had a brief email from Mark on Weds this week in which he said "Sean is going well. As of yesterday he only has to go into hospital once a week, and they will start the process of weaning him off the immuno-suppressant (exciting stuff!)." What great news.

Catherine was also talking to Newstalk ZB radio station about Wellington child cancer services, and was expecting to be on the radio on Thursday. I was working so was not able to hear it.

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Sean & Cameron

Christmas 2005

Cameron has his own blog

please visit also and leave a comment

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Feel free to add a Praying for Sean button on your blog.

Code for Sean Button can be found at this entry

Please Pray for our little boy

“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.”

Mark and Catherine Ternent

Six things to pray for

Click here to view

Recent Posts

Ohariu Farm
A Jewel in Miramar
We're Back!
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Suspected Graft vs. Host Disease
Merry Christmas!
Starship Visit
Some Photos for You

A Little Boy's Diary

- From Aug 6 2006.

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 10^th 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.