A year has passed

It has been a year since James’s cancer diagnosis and with that came all the fears and anxieties of 21 November 2011.  Throughout this time I have always tried to remain positive and strong but in the last month all I wanted to do was eradicate the memory of that fateful day.  Now that it’s December I can utter a big sigh of relief that the day has passed without a hitch.

 

James has improved leaps and bounds since my last entry.  He is at School most of the week and is enjoying the company of his class mates and feeling a lot more confident in himself.  He still gets tired, sore legs and sore tummies, but for the most part he is feeling really good.  The Consultant  is very pleased with James’s progress but I am still reminded that there is an 80% cure rate for this disease and that every bone marrow biopsy will be an indicator of that success.  There is 2 years of chemotherapy treatment to go with another 3 years of clear results and then we can safely say that the cancer is gone for good.

Much Love x

End of Round 1 of maintenance

On 25 September it was the end of round one of maintenance and the removal of James Hickman Line!  The day started with getting up around 6am as we needed to be at the hospital at 7.30am for surgery.  We met three different doctors – the anaesthetist, the doctor doing the bone marrow biopsy, and the doctor removing the Hickman Line.  James was second on the list but didn’t go into surgery until about 11am.  When James woke up after surgery he was feeling really sleepy, so we didn’t leave the hospital until about 3.30pm.  For the next few days James was not feeling very well, I think in part due to the anaesthetic, he vomited a few times and was very tired.  There are some of the photos from that day in the photograph tab!

School and Choppers

It has been a couple of months since my last update and James is doing well.  He is managing about half a week of school at the moment but I am hoping it will increase next term.  He does get quite tired and has been having tummy aches and a few mouth ulcers as a result of the chemotherapy and he still struggles being around so many people.  It is hard to know when to push him to do things and when not to as he has been through so much and he still has 2 years of treatment to go.  On the other hand James needs to get back to a some normality and gain confidence again.  In the meantime I have decided to just go with the flow because in the scheme of things this is nothing compared to what he has been through and what could have been. 

 

Since the last update, James, Alofa, Ria, Tali and James’s friends Malua, Jade and Hayden,  went to Pak n Save in Petone on 6 September where Josh Kronfeld and Shane Cameron rode from Auckland to Wellington on Choppers to raise money and awareness for the Child Cancer Foundation.  Check out the photos on the photograph tab.

Back at School

I have thought long and hard about James schooling, particularly since he is immune compromised.  James hasn’t attended school for more than 8 months and this year he was due to start a new school - Wainuiomata Intermediate.  Education is extremely important, and although James has had the lovely Lisa from Southern Health School teaching him twice weekly, he hasn’t mixed with children of his age for a long time.

When James was going through intensive treatment he picked up bugs really quickly and would spike fevers and that was without mingling with other children, so the thought of him going back to school with around 400 other students and the potential for picking up bugs – scares me.  Since starting this next stage of treatment James has been really well so it is in his best interests to go back to school and last week he did.  Unfortunately it hasn’t gone as planned so we have decided that he will attend school three mornings a week with 2 weekly visits from the Central Health School Teacher, Sue.  At the end of August we will review this and decide the next step to take.  On an upside he is on his full dose of oral chemotherapy and appears to be coping well.  He has also started his drumming lessons again and is enjoying catching up with his mates in the weekend. 

Maintenance Treatment has started

James has finally started maintenance therapy at half strength.  He was due to start it on 21 May but because the chemotherapy has given his bone marrow a good hiding it has taken it longer to recover.  Because of this it was decided that he start maintenance at half strength.  The doctor told me that the chemo is obviously doing its job and not to worry.  So James is on day 6 of treatment consisting of Tretinoin (Attra) 10mg, Mercaptopurine 50mg, and Methotrexate  10mg.  James still has his hickman line and will continue to have weekly dressing changes until the doctors say it can come out.  This week James will start back at school for the mornings only which is another step at getting back to some normality.  It is important for James that he also mixes with other kids his age as he has spent a lot of time in isolation with his close friend PS3!  I am looking forward to seeing James enjoy school again and will update you with the news soon.

Bye Bye CHOC

We left CHOC on 19 June and came home.  It was kind of sad leaving everyone behind but it was also very cool that James gets to go home after such a long time being away.  James has finished all of his intensive chemotherapy and will start maintenance once his blood counts come up.  Because James has had very intensive treatments his bone  marrow is very tired and his bloods have been slow to recover.

He was supposed to start maintenance on 21 May so since then we have been waiting and once his bloods were on the up we left Christchurch and came home.  Before we left James had his last IT and a bone marrow biopsy which shows that he is still in remission!!  We said goodbye to all our amazing nurses and Doctors and took a few photos so we can remember them as James will not need to go back to Christchurch unless he gets sick again.

Happy Birthday James

It has been nearly 7 months since James Leukemia diagnosis and on the 30 May he turned 11 years old.  We were hoping to get home for his birthday but that was not meant to be.  James blood results are a bit up and down which is stopping him from starting maintenance treatment and going home.  He had a nice day though - he had a banana cake which he asked for, a visit from Johnson from What now, and a few prezzies.

Check out some of the pics.

James has a visit from the Crusaders in CHOC

Homeward Bound

James last round of chemo has gone really well and we should be going home next week.  The doctors discharged James from the hospital today to Ronald MacDonald House while his blood counts recover.  On Tuesday 22 May if his neutrophils reach 0.75 then he will have his last intrathecal chemotherapy ever and will start his maintenance therapy.

James is really excited about this and knowing that this part of his journey is now over.  He is looking forward to coming home and seeing his dad, sisters, wags, puss puss, and all his friends again.  It will be kind of sad leaving Christchurch as we have spent a lot of time here and have met some amazing people and very special kids.

The next part of the journey is 2 years of maintenance chemotherapy for two years, at home!

JAK

Last round of intense chemo

James started his last round of chemo yesterday.  The doctors are very pleased with his progress and don't envisage there will be any problems.  Once this round is over we wait for his counts to recover and then we can go home for good!  To prepare for this James has had visits from the occupational therapist and other professionals to get him ready.  It has been a tough road at times but we are lucky that his treatment has gone to plan - some children aren't so lucky... James hair has fallen out and he is still being fed by nasal gastric tube but he does manage a few bits of food _ this will increase as time goes by.  God bless Jak

Belated Updates from Jak

Hi Everyone, sorry for the delay in getting these updates to you,  I have been away for a while but all should be fine from here. Raewynne

15th April 2012

James had his chemotherapy last week and his neutrophils are now at 0 and his platelets are down to 10.  A normal persons's neutrophils are between 1.5-7, and platelets are between 150-425, so you can see how chemotherapy affects the blood.   He has had two platelet transfusions since so his platelets should be over 40 by now.   The low neutrophil count (white blood cells essential in fighting disease) contributed to James spiking a fever yesterday so he was given iv antibiotics to fight it.  James was shivering, yet his body was hot and he had a rash of purple and red spots all over his body. Infections are to be expected after you have chemotherapy but they can still be quite scary. To try and prevent further infections James is in isolation which means he has to stay in his room 24/7.

James feels much better today - no fever and the spots are going away. He is back to playing his psp and playing on the computer again.  Ali went home today so we are going to miss him!  This weekend the girls are coming down with Uncle Shane so we are both looking forward to that!

4th April 2012

A lot has happened in the last few weeks.  Alii and I "shaved our lid" for child cancer and raised over 1,300!  We had a visit from Chris Jack, ex All Black and Crusaders player and we got to go home for a week!  While at home James went to Wainuiomata Intermediate for schooling from 9-10.30 each morning where he tried out some baking and also got to catch up with some of his mates.  Last Friday, James, Alii, Uncle Jamie and Malua went to the Phoenix football game in Wellington in the corporate box and on Saturday we watched Alofa and Ria perform with the Kids on Foot hip hop crew at the Children's Pacifica Health Day in Avalon.  On Monday 2 April we arrived back in Christchurch and into CHOC again to start intense chemotherapy treatment.  For the next two months we will be in hospital while James recovers from the treatment, so if anyone wants to write to James that would be awesome as he will be lying in bed most of the time and will be in isolation.  I will try and update James's blog as much as I can and take pictures of him as well.  I wish I took pictures yesterday when he came out of his operation because he just did not want to wake up so the nurse had to try and stimulate his senses by putting a napkin up his nose - it looked really funny.  Enjoy the photos.

Update from Jak

Another two weeks have gone by since my last update and not a lot has happened.   We are still going to the hospital each day for treatment and then returning to Ronald McDonald House South Island. 

James has met his teacher Lisa  from Health School South Island and has started doing work each day. He does maths online and has english exercises to do as well as reading.  

Alii and I are doing a head shave for the Child Cancer Foundation on the 24 March - donations have reached $700 thus far which I am excited about - we hope to raise at least $1000.

James is in good spirits - sometimes he feels a little sick and gets headaches from the treatment but otherwise is doing very well. 

We are looking forward to next week as we will meet the Crusaders at a Child Cancer Foundation fundraiser and where Simon Barnett is the host.

Thank you everyone for all your prayers and support - it is a long journey for us - but with everyone's help we will be able to get through it.

Hutt News Article - 6th March 2012

Click on the picture to view a larger version.

First week back in Christchurch

James has completed one week of treatment and is feeling good.  He still has an appetite but feels a little sick at the end of the day so he takes an extra anti-sickness pill.  His treatment is the same as before for consolidation one which comprises of 14 days of ATRA and five weeks of Arsenic trioxide.  James receives treatment for five days and then rests for two days - we are now on his two days of rest.

Last week he had a visit from the Prime Minister, the Hon John Key, where James got to show off some of his rugby skills.  The Prime Minister was visiting Ronald McDonald House to have a look at the earthquake damage and to meet some of the families staying here.

For the past week,in between treatments, James has been keeping himself busy with another boy staying here who also has cancer.  They have been playing playstation and riding on their scooters.  He has also had a visit from the Health School and will have his first lesson on Wednesday and another one on Thursday.  He will also have homework to complete each week so he doesn't miss out on school while he is receiving treatment!

James with his former teacher Al Ingham

James with kids at Arakura School

Chilling with the Prime Minister

John Key passing skills impress youngster

James and the Prime Minister - John Key

A brilliant photo of James Aberdein-Tapuai and the Prime Minister at Ronald McDonald House earlier today

Home for two weeks

James was allowed home for two weeks in between his treatments.  His neutrophils were looking good so there was no hesitation in packing our bags.For the first few days when we arrived home we just hung out with our family and became familiar with our surroundings again.  Wags was super excited to see us and was jumping around for ages!  We visited Wainuiomata Intermediate and met James' teacher for the first time and took a walk around the school.  We also visited Arakura school and saw his teachers and friends and took photos of them.  All his friends at Kids on Foot and the Wainuiomata Judo club were also exited to see him.  Friends visited and James had a ball with his rugby mates and family friends - jumping on the trampoline and playing on his scooter.  James had a great time with Jade, Lea and Sam and spent the day in Porirua at the skate park.  It was an awesome two weeks at home and we were sad to leave all our wonderful friends but now we are here back in Christchurch and starting treatment again today on the anniversary of Christchurch's big earthquake!  Here are some of the photos taken while we were home.

Message from Jak

Jak and James have been home for the past couple of weeks but will be flying back to Christchurch on Tuesday for another three months and the next round of James' treatment. Please keep praying that all goes well for the James and the rest of this beautiful family. Message from Jak below...

We have had such an awesome time at home - I am so lucky to have such great friends - to name a few - Lisa Gestro, Lisa Lualua Aati, Leanne Booth, Roxy Johnson, Raewynne McGhie, Frances Easthope, Robyn Crossley, Le-Lee-Anne Murphy, Lauren Anne, Lealofi Nanai, Lynette, Barbara....the list goes on.....I am also blessed to have such a great husband and kids....

The Clown Doctors

Today we had a visit from the Clown Doctors who are specially trained masters of humour and spontaneous play. With all their artistic skills, gags, tricks, improvisation talent and special hospital training, the Clown Doctors help to bring back fun, cheer and a refreshing zest for life (www.clowndoctors.org.nz).

Message from Jak

To all my friends and all of James' supporters - thank you SO MUCH for supporting the Dash n Splash for James - you all Rock!!! It means a lot to me and Alii that everyone has come out to support James in his illness. James has been so brave...he deserves all this attention and more...LOVE you lots especially to Lofisamjade Fuataga and the crew from Kids on f.o.o.t

Bank Account Change

Hi everyone, for those of you who are interested in fundraising or donations for James please note that the bank account details have changed.

His account is:

James Alan Aberdein-Tapuai

12 3141 0369980 51

Thanks for caring.

Visit from Crusaders

Yesterday, three of the Crusaders - Adam Whitelock, Robbie Fruean, and Zac Guildford came by for a chat with James while he was having his chemotherapy treatment.  The Child Cancer Foundation organised their visit to CHOC and the guys were awesome!

Wainuiomata News 18th January 2012

Hutt News Article 17th January 2012

 

Beads of Courage

Beads of Courage is a unique program designed to honour the challenging journey kids take while receiving care for cancer.

Each collection of Beads of Courage symbolizes the courage and honours the milestones achieved along the treatment path (CCF).  James has collected 157 beads of coverage so far and today he decided to thread some of them together.

Update for today

Yesterday I met the mother of the only other patient who CHOC have treated for APML (Leukemia) in recent times.  She told me her son has undergone treatment for approximately 3 years; including 8 months in Christchurch and a further 2 years on maintenance at home.  It was awesome meeting this family to find out more about the treatment and what we can expect in the future.  The last patient that was treated for APML was 10 years ago!

Exciting News - James' Leukemia in remission

We received the bone marrow results today and Doctor Mike told us the good news that James's Leukemia is in remission.  This means that the treatment has been successful and that so much of the leukamia has been destroyed that it can no longer be detected under a microscope. This does not mean James has been cured but it does mean he is on the way to being cured.  Treatment will continue here in Christchurch for a while yet and then onto Wellington for maintenance.  Needless to say we are very happy!  Thank you everyone for all your prayers and support!  God Bless xxxx

Memphis sings for James

Follow the link below:

Memphis sings a song for James from Kids on F.o.o.t.

Kids on Foot Splash n Dash for James!!

GET IN THERE AND SUPPORT ONE OF OUR BOYS CURRENTLY BEING TREATED FOR LEUKEMIA ... CHALLENGE FROM OUR Kids on f.o.o.t TO MAKE A DIFFERENCE ... if you can't be there, sponsor some of our kids ... ♥ xx This is for you James, Jak and family!!

Check out the Ways you can Help page for more info.

Heartfelt from Jak

I met a family today at CHOC whose 4 year old son was just diagnosed with Leukemia and I could see on her face that she was in shock and I then realised that was me 2 months ago - James and I have been in Christchurch for 2 months! I really felt for this woman.

Chemotherapy has started

Today is James's fourth day of treatment.  He is managing this really well and so far there have not been any side effects. The chemotherapy treatment is given intravenously through the Hickman line over two hours.  Once treatment is finished we head back to Ronald MacDonald House for some rest and relaxation or playstation 3 in James's case!

Update for Today

James blood results today show that they are high enough to start his next stage of treatment, which will go on for 41 days.  From here on in James will be considered an outpatient and will therefore receive his treatment during the day and will stay at Ronald MacDonald House at night.  

Tomorrow he will have a bone marrow aspiration which will show how his bloods are doing. The Bone marrow aspiration removes a small amount of bone marrow fluid and cells through a needle put into a bone. The bone marrow fluid and cells are checked for problems with any of the blood cells made in the bone marrow (web.md.com).

On Friday James will start his chemotherapy which is a combination of two types of medicines - trentinoin and aresenic trioxide.

Please be sure to leave a comment for James - he would love to hear from you. 

Blessings from the Word

Your 'faith' is what activates the power of God. Before a stone becomes a diamond it's just carbon put under extremely high pressure. The Bible says, 'These trials will show that your faith is genuine. Trouble not only places a demand on your faith, but reveals the depth of it. You don't really know much about your faith when your bills are paid, your body is healthy, you...r children are acting right and your marriage is intact. But when all hell is breaking loose and you trust God to bring you through it, you know you've got faith.

So Put your faith to work 'Take the helmet of salvation and the sword of the Spirit, which is the word of God...' Ephesians 6:17 and Say, 'Enough is enough,' and begin to take back what the enemy has stolen from you.

As we approach a new year may you take a closer walk with Thee...

God Bless ... Admin 1Luv

New Years Eve from Jak

I can't think of a better New Years Eve than being with my family - I am going to cherish every moment that I spend with my husband Alii, son James, Alofa, Ria and Tali - I love them sooo much - next year will be the year for our Family with James being cured from Leukemia - BRING IT ON 2012.


It has been an awesome week. It's like James is his old self again. Treatment has been delayed for a week due to his neutrofils being too low. On Wednesday they will do his bloods again and if everything is what it should be he will start chem on Thursday. Will load some photos up on his website. Happy New Year everyone and thank you again for all your support and making James' Christmas a good one! xxxx