Back to page

Help Support Jeda's Fight Against DIPG Brain Cancer

  • Six months plus post diagnoses Dipg

      28 May 2017
    Main image

    Hello hello hello to all our supporters of jeda and our journey.

    This will be our final update on give a little and we are closing this page.

    It was advised by other parents in similiar situations as ours to set up a gofundme or give a little page so that when life is unbearable at least the financial pressure will be eased.

    Cancer is not cheap.

    It has been a HUGE journey for all three of us to date. Not having the huge immediate financial burden really helped us. THANK YOU so much. If there was any supporter I didn't thank individually it was because sometimes the system did not display it in date order.

    Every decision we have made for jeda has been thoroughly investigated. if we had this most terrible six months + of our lives back again there are many things we would change and glad of many things that went our way. Education has been the biggest tool.

    Jeda is doing fantastic.

    Significant reduction in tumour.

    Jeda will be in school a lot more. She could do with more weight but that's the nature of the beast within.

    Friends and family have been amazing support and travelled from all over the world to be with us especcially at the beginning. Thank you for that support. Also to the family friend that was there at diagnosis time we are forever in debt. Thank you for putting your own life on hold and being there for us. And giving generously so much of your time. We are deeply grateful.

    Travelling here also is huge in itself thank you family and friends for time and expense.

    To all jeda friends thank you for including her and inviting her to parties. It means a lot.

    Also for the gifts and beautifully crafted presents, it's extremely thoughtful and kind. Our eyes are now well and truly opened to the other side of how life is for some people. Life will never be taken for granted. We are grateful that we got away without deep grief/ shock for so long.

    Every day is a gift, a fresh new wonderful day where ANYTHING is possible.

    Thank you to our friends in whangarei that helped ease the unchartered road. It really helped.

    Thank you so much supporters of jeda and us and helping to create a DIPG awareness.

    The,

    DIPG name, diffuse ( all over the place)

    Intrinsic ( inside the brain )

    Pontine ( in the pons part of brain)

    Glioma ( a glial cell in the brain stem named after where the cancer grows ) it's a common brain cancer

    DIPG Name is being changed by world health organisation to

    diffuse midline glioma. Not sure if it will be DMG

    Hopefully that will help the funding to find a CURE

    DIPG Be gone. Jeda writes this everywhere on everything.

    Special thank you to

    Jeda's hypnotherapist Derry

    Tish for cranial work

    Johnny for homeopathy

    Lou for naturpath

    All work in whangarei and all on jeda's team. We hope to continue this work on a regular basis into jeda's future.

    ***Recommend recommend recommend ****

    Also thank you to jeda gp in environmental health who took us on helped us get on the right road.

    Will post from time to time on caring bridge site. If you wish to follow jeda white journey please find her on caring bridge. im sure she is the only jeda there. Sending back loads of love. Thank you thank you thank you.

      0 comments  |  Login to leave a comment

  • Wow time flies

      15 March 2017

    Its surprising that the last update was just about a month ago! It seems like just a few days. Jeda is doing great and is feeling considerably better overall. the horrid fatigue from the radiotherapy is starting to ease off and there is even signs of some hair regrowth. She picked up a little snuffle a couple of weeks ago and it became an infection that would not respond much to antibiotics. An alternative treatment dealt to it and it is now virtually gone. We have to treat her as immunocompromised for the moment. This is then one of the most important aspects of her care, to rebuild and strengthen her bodys own defences. The human body is an amazing thing, given the right inputs it can deal with almost anything - including cancer. Given early diagnosis.

    Our situation with jeda is a little unusal in that once the one and only "approved treatment" is done there is nothing else on offer through the traditional health system. Radiotherapy is the first and last option, after that its time to go home and....you know....

    Anyone that knows us will know that is not how we roll. Pulling the blankets over our heads and waiting is not an option that sits well with us. And so began a journey of discovery and learning such as we have never undertaken before in our lives. It seems that when our backs are to the wall we are not the kind to shrink and fade away. The first thing was to find the good sources of information and sort them out from the mounds of over dramatised, politicalised, self serving, quackery that abound. The information is out there. We then set out to learn as much as possible about cancer. Why it exists, how it starts, what happens in the body when cancer is there. We researched the most eminent scientists, educators and scholars works and built up a thorough understanding of cancer. The answers were not at all what we had expected. In fact they were so different that it was something of an eye opener on how the whole 'cancer industry' actually works. Armed with a solid understanding of cancer from a genetic, biochemical, biological and physiological view point we now had the tools to learn about how to actually do something to alter the course of this cancer in jeda. This is no mean feat, we have spent hundreds of hours researching and learning and gathering information from the four corners of the globe. If that sounds a little harsh then let me explain. Everyone has seen the news headline 'new miracle cancer drug almost here..." well how do you think they find these miracle compounds? They are found in nature. Plants mostly. The problem is that you cant patent a plant or anything from nature so there is no profit in it. The pharma companies spend huge money creating a synthetic 'replica' of the compound and give it a fancy name. They can then say its theirs and charge a fortune for it. The only problem is its not exactly the same molecule as nature provided so it just doesnt work the same. Usually its toxic!

    We then set about finding what medical trials are being done around the world and if jeda could be eligible for any of them. Some are crazy expensive, millions in US dollar, some are phase one only which is a real hit or miss. None of the options or trials are available in the sothern hemisphere and none of them have really created a better outcome overall as DIPG has one of the worst overall prognosis in childhood cancers from the traditional mainstream figures.

    We have not ruled a trial out but for the moment it is not a great way to go. A trial is not a proven therapy with efficacy, it is designed to test the safe dosage amounts in humans where the toxicity levels are high.

    We have never really had any particular interest in anything outside the mainstream medical world, no need too i guess but now we are faced with a situation that there is nothing on offer. We began researching alternatives. Ok i hear it 'its all quackery...mumbo jumbo.....etc' well where did the pharma companies come up with their base compounds from? Yes nature. Nature is a great and complex provider of many things that we just dont know about. We discovered a wealth of facinating research and information on what can be done to influence cancer. cancer is much better treated with naturally occuring compounds than synthetic ones.

    This is where the strict diet comes in. Animal protein contains growth hormones that feed cancer in a big way so thats out. Including dairy and to an extent fish as well. Sugar is the enemy. Cancer directly feeds on glucose in an anaerobic environment so thats out for cancer sufferers. What is left is vegtables, fruits, nuts and seeds. The foods we are actually designed to live on. It so happens that there are a group of foods that not only nourish but actuall act to kill cancer cells and it is these foods that now form the basis of our diet. There are many and complex biochemical reasons that these foods do what they do but they really do!

    Normal cells require oxygen to metabolize their food but cancer is allergic to oxygen and needs an anerobic environment. This gives us an opportunity to attack the cancer with antioxidants. Cancer is also only able to grow in an acid environment so another attack is to alkalize the body with alkaline foods and water. Hence the water machine. many of the compounds found in nature are able to be extracted and are available as supplements. Curcumin, black pepper, frankensence, botswellia to name a few are super powerful at fighting cancer and break the blood brain barrier. But diet and supplements are not going to do the job alone. After a lot of digging the next line of attack was to purchase a resonance machine. This is essentially a very much updated version of rifes machine and has shown itself to be highly effective at killing cancer cells.

    Over the last couple of months we have developed a highly complex, detailed multi modal protocol to hit that cancer where it hurts. This is only a very basic overview but we believe it will be vastly more effective than pretending its going to go away by itself.

    We would like to thank all those who have contributed to Jedas cause and helped us with support and prayers.

    There is nothing cheap about cancer, the cost of supplements alone runs into the thousands every month. Without givealittle we could not have purchased a water treatment machine or resonance machine or done much of the treatments and research we have done We appreciate every penny.

      0 comments  |  Login to leave a comment

  • Jeda rocks

      28 February 2017
    Main image

    This was a copy of last entry so didn't want to duplicate thanks

      0 comments  |  Login to leave a comment

  • Warmth and strength from community and school

      22 February 2017

    We would like to thank St. Francis School, whangarei, the best school in whangarei! For showing so much love and care for our daughter jeda diagnosed DIPG on 12/12/16 at this time. SFX surrounded her with purpose, and facilitated visits. Re arranged much to cater for a newly diagnosed child of DIPG. St Francis are welcoming her back soon and jeda would go right now if she could. Jeda was raging she missed the mufti day 'for her' and wanted them to have waited until she was there! Jeda is in great form, back to our usual girl. Happy and thrist for knowledge. jeda is now plant based foods as one of our methods of attack is to block out the processed sugar and all animal fats. This seemingly feeds cancer. Jeda is coping, it's the parents!

    Jeda own immune system can get through the blood brain barrier to deal to the v.large size tumour in her pons so we have to make sure her immune system is in peak condition.

    Team jeda or give a little have also purchased a Resonance machine from Canada. It. Was 12k incl tax plus and will be here Soon. Yay.

    It is a tumour treating field machine made especially for jeda and the thing in her head called DIPG. Anyone interested in knowing more pls look up mr Anthony holland on YouTube he did 17 mins on ted talks and how he believes it is how cancer will be treated in the future everywhere in the world. Results have been amazing. In the meantime, we hope your finding this journey informative and optimistic, because of the love given and having some time to educate ourselves on cancer we have a plan. A plan is rigid and jeda has to own the plan as much as us. That has every machine imaginable. Now our focus is on living well with Or without jeda tumour. We are grateful to the radiation has given us the time to come up with a plan. 2017 is not going to be doom and gloom it's full of positive plans and fun. Grateful to give a little on helping us pay for this time to catch up with what our new cancer fighting task is. We don't know what we would have done if we had the huge burden of finances on top of our cancer battle. Cancer does spiral you down. Thank you give a little from the bottom of our hearts. Thank you for supporting us, thank you for following our journey, thank you and we will never forget. Also thank you to jeda's Aunty on grandad side who made also a sizeable donation in our cause to help DIPG awareness, and get through the roughest two months of our life. Xxxxx thank you relatives in Wellington.

      0 comments  |  Login to leave a comment

  • The next phase

      14 February 2017
    Main image

    Hi give a little followers of jeda journey. On Friday we are finished with radiation, which in our opinion has been a success. Although no one can tell for sure until a MRI scan. With DIPG you can show NO symtoms but the tumour is growing in the pons so much it can take a child out in days. The last two weeks have been bliss, jeda answers me back, teeters precariously on large trees from a great height, and generally is back calling the shots. I'm so grateful for this it's be like all my wishes have come through. With the support of friends and community and family we have been able to spend the time working on a plan. It is a many pronged attack and we are optimistic. Learning about cancer has been an eye opener and we are going to use this cancer as an opportunity to embrace our new life and learn and grow. This life revolution is about food, medicine, attitude. It's a plan with many different facets. Thank you for caring and wanting to know. DIPG BEGONE

      0 comments  |  Login to leave a comment

  • Over halfway through the radiation

      31 January 2017
    Main image

    Wow its hard to believe its been so long since the last update was posted here. It seems both a blink of the eye and forever at the same time. Jeda is doing really well and tollerating the treatment like a real trooper. We are beginning to think about where to after the radiation is done. About six or eight weeks after the treatment she will have a mri Scan to determine the effect of treatment. Options in public health after that are pretty much non existIng, We are researching many options. CED trials, ultra sonic disruption of blood brain barrier to allow the use of chemotherapy drugs effectively (hifu). It is a steep learning curve but we are up for it. We are formulating a plan of attack. There are quite a few interesting breakthroughs being made around the world and we fervently hope some of them will be accessible in time for our beautiful Jeda. Thank you to everyone who has contributed by donations, please spread the word and keep it coming. Every cent is needed to fight this dreadful disease. On a positive note Jeda started school here in Ronald McDonald house today and had a great time. We have just under three weeks to go here before radiotherapy is done.

      0 comments  |  Login to leave a comment

  • A Florence Nightingale in the making

      16 January 2017
    Main image

    Today was a day of love, laughter and fun. Jeda had a fantastic day today. Sympoms were at a minimum and she woke up a box of birds this morning. After a difficult week it was heart warming to see her happy.

    Jeda was the star of the show at treatment today when she turned up wearing a fantastic nurses costume that she had spent several hours making. She did it all herself.

    Taking it one day at a time, we'll have more days like today please!

    A huge thank you to everyone who has so generously donated and supporting us and jeda through this tough time. Your love is so appreciated.

    Jeda has six long weeks of treatment to go and is being super brave. She is so great that she does not need any sedation and can hold herself perfectly still while the radiation is administered.

      0 comments  |  Login to leave a comment

  • Enjoying the week

      4 January 2017
    Main image

    This week we're doing lots of fun things while Jeda feels good. We celebrated New Years Eve by going to the new restaurant in town while wearing silly hats and blowing horns. We've been to the beach every other day, and Jeda has become an author and illustrator. She's written five (and counting) books about her kitten, Jonny puss, and his wild adventures. Today she loved sharing them all with her beloved teacher from last year, Mrs. Henry, who came to visit. Tomorrow we're heading to the beach again, but this in time in the camper to stay overnight! Jeda is excited and looking forward to finding more starfish, jelly eggs, clams, and other sea creatures. We head to Auckland Soon to start radiation on, for the first week of treatment. She'll have 6 weeks of radiotherapy so that she'll be finished just in time for her 6th birthday. Jeda has been really well considering the monster in her head. She has some occasional headaches, dizziness, tiredness, and tummy pains, but overall, is doing amazing and loving life. She brings us so much joy and we laugh and laugh as much as possible! Many many thanks for all the love and support, including the donations. The love is working; keep it coming!

      0 comments  |  Login to leave a comment

  • Living life to the max

      1 January 2017

    Hi everyone Happy New Year!

    Since we have been home jeda has gone from strength to strength. The continious play and stimulation seems to be really helping her. It is hard to believe that such an evil thing is lurking in there. Following the visit to starship we now have a radio therapy regime worked out. Five weeks of five days a week and home for the weekends. It will be a tough time but we are really hoping it will buy us some quality time with her. On another note we have started to give her water which is highly alkaline. Apparantely Cancer cells cant divide and grow in an alkaline environment according to alot of the research out there. Time will tell if it helps to shrink the tumour.

    lets hope 2017 brings our Jeda a miracle!

      0 comments  |  Login to leave a comment

  • Home from Auckland, Part 1

      29 December 2016

    29/12/16:

    Journal entry by Lauren White — 1 hour ago

    We just arrived back home and the planning went as well as it could. Jeda was so incredibly brave and didn't have any trouble with having her mask made or the CT scan. She drew a picture on her mask of Anna (from Frozen), which was then molded exactly to her face. The adults found it much scarier than Jeda did! The mask will help make sure she's getting the radiotherapy exactly where she needs it and nowhere else. She earned two more bravery beads from the hospital (added to her already long necklace). She's going to start a 6 week course of radiotherapy sometime in the next week or two (waiting on the exact start date, hopefully soon). It will be 5 days per week, every week for 6 weeks, with the weekends off. We'll be staying at the Ronald McDonald house and coming home on the weekends. Jeda still has a very wobbly tooth. Rose the fairy is on standby, ready to accept and reward! We so appreciate all the support we've already received. Thank you! Please keep it coming in whatever form you can and spread Jeda's story far and wide. Lots of love from Jeda (bubble), Aaron, and Clare.

      0 comments  |  Login to leave a comment