Rare & Aggressive Brain Tumour - Kaleigh's Trust Fund

By Wai-Chung (Scott) Lau

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PLEASE SIGN OUR GLOBAL DIPG PETITION:

"Give Back their Childhood! Fund More Research into DIPG Brain Tumours No Child Survivors!"

https://www.change.org/p/jeremy-hunt-mp-secretary-...

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Update: 12/05/17

So our brave little princess completed her second treatment today which involved IA and Immunotherapy. We understand Kaleigh is the first overseas patient in the world to have this combination in Monterrey, Mexico, as she was lucky enough to be off steriods. This is truly a pioneering moment, we genuinely hope we are on route to finding the cure, but this is still a distant dream. We owe ourselves to social media Facebook, other DIPG families for opening our eyes to different options and the overwhelming support from our friends and family. Never would we have thought to be in Mexico, but we are.

We have also received the results from the MRI scan, the doctors are very pleased with the results saying the tumour has shrunk by 1cm from circa 3.26cm, if my maths is correct that is a reduction of over 50%, which is unbelievable and beyond our expectation. I have no reason to doubt the doctors here as they are truly amazing and caring individuals plus I can see from my own eyes the clinical improvements over the past couple of weeks.

Please continue to follow Kaleighs daily blog on the linnk below:

https://www.facebook.com/Kaleighstrust/


Costs: -

These are becoming clearer; however still rather in piecemeal fashion. My figures are rounded to the closest £1,000:-

Intra-arterial - £13,000 per treatment, 10 is recommended as a minimum

Immunotherphy - £13,000 per treatment, 4 is recommended as a minimum

Please note: After these treatments there will most probably be occasional visit for maintenance say every 3 months. All the above is subject to the childs response to the treatment and therefore could change.

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Update: 22/04/17

We arrived in Mexico on 18/04/17 and met with the doctors that evening. Kaleigh had her first treatment on the 19/04/17 and was discharged within 24 hours.

Even though Kaleigh's tumor had progressed since the MRI scan in mid-March the doctors were happy with how the whole procedure went.

Please follow our daily blog to see how our little princess is doing.

https://www.facebook.com/Kaleighstrust/

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Update: 13/04/17

We have decided to go to Mexico for Intra-arterial Chemotherapy Infusion Treatments and immunotherapy, as there is nothing else to offer in the UK. This was not an easy decision but we brought Kaleigh into this world and we will continue the fight to give Kaleigh what she deserves (a chance in life).


Note: Kaleigh knows we are going to Mexico for a family holiday with visits to the doctors to have scans to help with the little lump


This may seem like a knee jerk reaction to some, but people that know me understand I put everything into prospective then make an informed decision based on what I have and what we as a family believe is right.


Unfortunately on this occasion I am flying by my pants a bit, as there are still many risks and still many unknowns, but what have we got to lose.


We really are not sure of how long we will be out there for but would appreciate any help you can give, as Yang and I will no longer be working for a period of time and if you can think of any fundraising ideas or know someone wealthy and would like to sponsor us in any shape or form we would be very grateful of that.


To find out more about the treatment, please read the link below:

https://www.facebook.com/itbebrittany/posts/1328230370591421


Treatment moving forward will be solely self-funding and will mount into the hundreds of thousands. I have based my budget on 10 treatments, but will update once things become clearer


· £88,000 IA Doctors / Drugs (10 no over a 7 month period)

· £48,000 IA Hospital Fees (10 no over a 7 month period)

· £72,000 Immunotherapy (9 no over a 7 month period)

· £20,800 flights (8 no over a 7 month period)

· £14,000 Accommodation (7 months)

· £14,000 Taxi / Translator / Food (7 months)

· £10,000 – Traditional Chinese Medicine (Acupuncture, Moxibustion and Herbal Drink) (5 months)

· Sub- total to £266,800

· Plus costs spent to date circa £40,000 (TCM, Mini breaks, Water machine, private appointments and scans)

· Total equates to circa £300,000


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Update: 28 March 2017

Kaleigh has been on experimental drugs since the end of the reradiation. We really do not know whether it is working, as other symptoms are now becoming more prominent.

Apart from double vision she now has a slightly unbalanced walk. We just pray this goes away and the drugs start to do it job, remember everything moving forward is now trial and error.

On a happier note, we had a mini break at Butlins and Kaleigh enjoyed the slot machines and managed to spend time with her best friend.

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Update: 16 March 2017

The CED team has reviewed the MRI scan, but unfortunately it is not the news we all wanted. Kaleigh will not be eligible for CED.

The re-radiation has not shrink the tumour as we had hoped but seems to be stable for the time being, we will continue to explore other options with the help of our doctors, friends and other families going through the same as us.

Thank you for the continued support and we will continue this battle with Kaleigh and give her all the love she deserves.

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Update: 28 Feb 2017

Kaleigh is doing well and continues to attend school everyday. In between school she visits Great Ormand Street hospital once a week and gets visits from her Chinese Doctor 4 times a week. We continue to take every day as it comes.

The next MRI scan has now been schduled for Wednesday 15th March 2017. This will be an important scan, as it will determine our next step of this journey. Please continue to pray for good results

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Update: 10 Feb 2017

Our brave little Kaleigh completed her second round of radiotherapy on Monday 6th February with no complaints or complications. This round of RT consisted of 10 sessions. Her symptoms of double vision hasn't got any worse and we have started to wean her off the steroids, which is all postive. We really need the RT to work it's magic and give us the results to enable Kaleigh to get back onto the CED Treatment in circa 5 to 6 weeks time. Please continue to pray and visualise... the tumour shrinking with no spread and that Kaleigh remains healthy.

In the meantime Kaleigh will go back to school to enjoy time with her friends

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Update: 17 Jan 2017

As you can see from the recent posts, the beginning of 2017 has been tough as things are constantly changing; however we have regathered our thoughts and have a plan moving forward. Kaleigh will be having Re-radiotherapy w/c 23 January 2017 for 10 sessions, MRI scans will then be taken approximately 5 to 6 weeks after RT to review what has happened to the tumour. With all going well, the CED team will then reassess Kaleigh’s condition and schedule in a new date for her to have the CED treatment.

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Update: 07 Jan 2017

No words can describe how we feel at the moment, we are totally devastated as the CED treatment was halted at the 11th hour due to safety reasons. During the preparation period, the doctors saw cysts just outside the pons area, which would have cause Kaleigh more harm than benefit. We will be speaking with our NHS Consultant on 09 Jan 2017 to see what other options are available to us.

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Update: 06 Jan 2017

Kaleigh had an MRI / CT scan today in preparation for the World Pioneering CED Treatment in Harley Street London. The surgery will be taking place on 08 Jan 2017, with infusions on approximately a monthly basis.

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Update: 29 Dec 2016

Kaleigh was experiencing double vision on 28 Dec 2016 and after an MRI scan on 29 Dec 2016 it revealed Kaleigh was in progression and the tumour has started to regrow.

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Update: 09 Dec 2016

Background and Journey to date:

Back in April 2016, our beautiful 6 year old daughter Kaleigh was unfortunately diagnosed with the worst illness a parent could ever imagine, an illness that we had never heard of called #DIPG (Diffuse Intrinsic Pontine Glioma) a Childhood Brain Cancer which currently has No Cure, Less than 1% survival rate and typically only gives the children a median of 9 months to live from diagnosis.

Remember this illness does not discriminate among nationality, colour, gender or genetics but it does target the helpless young children between the ages of 4 & 10.

At the beginning we were feeling helpless, lost, but putting it quite simplistically…….broken, no words could have described what we was feeling. Knowing there was nothing in the world that we could do to save our precious daughter.

However the battle is not over and we would never ever give up on Kaleigh…….never, she is our daughter, our world, our everything.

Since coming to terms with the illness we started 6 weeks of radiotherapy (the only recognised prolongation of life), complimentary Traditional Chinese Medicine, Bio-Energy Healing, Physiokey, change of diet, drinking Alkaline Water and daily foot massages to maintain her health until we find a suitable treatment.

Whilst searching the world for treatments, we also proactively campaigned to raise DIPG awareness through our Kaleigh Bear Campaign, DIPG Nomination Challenge, Governmental Petition, Change.org Petition and weekly Parkruns, so that everybody can understand the severity of this illness.

Next Steps:

Since the diagnoses #Teamkaleigh has been searching the whole world for a treatment to help prolong Kaleigh’s life in the hope that one day a cure can be found and the tumour eradicated. Fortunately, Kaleigh remains well and has returned to normality and is able to attend school every day…..however based on statistics we are running out of time, as we are already in month 8 of a typical 9 month journey.

Since the beginning we have been following a world pioneering treatment called CED (Convection-Enhanced Delivery), which fortunately was in Bristol UK, however it turned for the worst when the programme was suddenly stopped due to resource and capacity issues back in May 2016.

Finally after many months of hard battling behind the scenes, we have heard the CED treatment will reopen very shortly in Harley Street, London and we are desperately hoping that Kaleigh will be one of the first children to be treated under the watchful eye of Prof Steven Gill and Dr Stergios Zacharlious. It has been a painful wait, but it seems like it is actually going to happen very soon.

Just to be clear this treatment has been showing encouraging signs for prolongation of life for DIPG sufferers, but cannot be confirmed as a cure yet. This treatment is anticipated to go into Clinical Trial later in 2017 funded by Funding Neuro.

Fundraising:

Unfortunately, moving forward none of the treatments will be funded by the NHS as these treatments have not been approved by NHS as they are too new. From now on every pound, every penny will be from our own pockets and it could lead into Hundreds of Thousands of pounds as follows: (approx. spend in the coming 12 months)

• £115,000 - CED installation of device and approx. 10 infusions (allowance)

• £20,000 - Re-radiotherapy (allowance, if NHS cannot provide)

• £45,000 + £10,000 - Immunotherapy in Germany + travel & accommodation

• £24,000 – Traditional Chinese Medicine (Acupuncture, Moxibustion and Herbal Drink)

• Totalling to £214,000

Therefore if anybody knows of any wealthy, kind & generous individuals who would like to donate or sponsor us to give Kaleigh a chance of survival, please get in touch to let us know how you would like to help. Also any friends or family considering organising any fundraising events, please remember us.

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Original - Post

Our Story

Like most girls her age, our Kaleigh enjoys being a princess, attending dance lessons, singing, swimming and playing with her friends. But more importantly being the loving daughter to us and the caring big sister to her 4 year old brother Carson.

However, on Thursday 14th of April 2016, something didn't seem right; she wasn't her usual self. She had complained of double vision which we had put down to the cold she had been carrying, which we thought was getting heavier and had decided to keep her home from school.

To our relief, everything appeared to be okay the next day and Kaleigh was well enough to attend school and get back to being the vibrant little girl we all knew and loved.

We were eating breakfast on the morning of Saturday the 16th of April 2016 before getting ready for Chinese classes, when Kaleigh laughed that she could see two of me, and we noticed her left eye turning slightly inwards. I got in contact with a friend who is also our optician to ask for his opinion. He suggested we took Kaleigh to Moorfield eye hospital where they confirmed double vision but the eye was healthy but suggested we should get further checked out at a general hospital. We were taken to Royal London, where they carried out a CT scan at 4.30pm, followed by a MRI scan at 9.30pm, with results close to Midnight, when we were told abnormal tissue was found in the brain area but weren’t able to elaborate on the information.

We were transferred to Great Ormond Street Hospital at 3.00am on Sunday 17th of April 2016, where we met with other doctors and they showed us the scans and highlighted the abnormal tissue they had identified.

My wife and I was taken to a room to have a further discussion with the consultant at 11am regarding the abnormal tissue, and advised they would provide a plan of action by Tuesday morning after their multi-disciplinary meeting.


Tuesday 19th April 2016, this was the day our world turned upside down and heart shattered to pieces as the consultants confirmed the diagnosis that Kaleigh had developed a condition called DIPG. At the time, we had little knowledge of what this was except we were told there is currently no known cure and this news left us devastated. Like any parent in our predicament, we will do everything we can and cling on to even the faintest of hope.

Monday 25th April 2016 saw the first of 30 scheduled sessions of Radiotherapy which is due to be completed by Tuesday 7th June 2016 at University College Hospital. Kaleigh is currently doing very well with her radiotherapy and she has managed to go into school occasionally to see her friends even if it's only for an hour. We try to keep her life as routine as possible.


We are currently travelling into hospital everyday during the week, which has been tough for the whole family. This is where we are thankful for the support of family and friends, as this have given us the strength to keep going.

We are thankful for all your support and we will continue to be strong, as we believe no cure today, does not mean no cure tomorrow. We will keep believing.

Lots of love

Scott, Yang, Kaleigh and Carson.


What are we up against:

Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumours occur in the pons (middle brain stem), are diffusely infiltrating (they grow amidst the nerves), and therefore are not able to be surgically removed.

Approximately 40 children are diagnosed with a DIPG in the UK every year. Very poor prognosis with an average survival time of approx 9 months from diagnosis.

How we intend to use the generous donation:


  • Ongoing Care for Kaleigh including supplementary medicines and transportation
  • Things to keep her smiling like outings and special treats
  • Future treatments which we are currently discussing with Kaleigh’s Consultants, which could mount up, if Clinical Trials can not be sought.

For further information on Kaleigh's progress and updates, please visit the following:





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