“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."
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.
Hope the biking went well, Mark. Great to hear that Sean is off most of the medication. Have an awesome time away. I hope its a time for rest and relaxation and reflection as well. We continue to pray for Sean and for the whole family for that matter. Enjoy your time together and make sure there's lots of fun! Lots of love from the McCrowds! xxxooo
Hi Guys,
Just lovely to hear things are going so well, and that Sean is growing from strength to strength. You are often still in our minds aswell, and our prayers for you all are still with you. Hope this holiday away will always hold special 'milestone' memories for you all.
Love and blessings,
Edwards family.
Kim Philip Sam Alex Isaac.
To God be the glory!! So glad to hear all the updates. I still anxiously await them, I prob will never stop! Give the boys my love and much success to you on your bike ride.
Kristy
Wow it is a great feeling to read this post and know what God has done for your little boy and for your entire family. I can't explain just how great I feel being able to read a post like this after such fervent praying for an entire year. GOD IS GREAT!!!!!! We love your family and are so excited for you all. Sean is such an awesome little guy and is now a sign of exactly what God can do when prayer and faith in Him are involved.
In Christ's Love,
Aidan, Traci and Michael Porter
PS - We found out that we are having a little girl and can't wait.
So glad to hear you are all doing well and having fun. We had a lovely January holiday in Taupo a few years ago. We had lovely walks and swam in the lake every day - even the really cool cloudy days - and we found the warm bit in the river!! Hope you have fun there too and collect lovely memories like we did.
“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.
Posted by Dianne
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