Update: May 2017

So much has happened over the past couple of years; mentally, emotionally and physically that it’s hard to put it all down on paper.

Firstly, we would like to extend our sincerest apologies for not providing an update sooner. There are many reasons why we stopped giving updates; some of these reasons we’ll explain below.

There were a lot of criticism out there against us as parents, for wanting Chiané to have additional “alternative treatments”. In many cases, it was bloggers; strangers who knew nothing about us as a family. People who might have read a newspaper article somewhere, or watch a tv program about Chiané and then started to write about us as parents. In many cases it was aggressive, hateful and demoralising.

We came to understand that most of the people who wrote the criticism about us had no medical expertise, didn’t have a child with cancer, never had to deal with a family member who had cancer, and didn’t understand what was involved with a child who had been through what Chiané went through. Bloggers who had no comprehension of the things that Chiané had to deal with and still have to deal with.

The situation we found ourselves in, were stressful enough. We didn’t have the time or energy to deal with ill-informed, hateful bloggers. We didn’t see the need to justify or defend our decisions to do absolutely everything in our power to help our daughter; and we were definitely not going to do so with people who knew nothing about us, or who didn’t have a child going through cancer. We therefore decided to just go quiet and get on with what we believed was the right things to do for Chiané.

Another reason why we went quiet was to give Chiané her life back as best as we could. We realised early on after treatment, by giving constant updates, we took away Chiané’s privacy. With her website getting so many hits and being constantly in the public eye, in most cases she was at her worst, for strangers to scrutinise, took away her self worth too. Chiané was also the victim of online bullying (we can only thank our lucky stars that she didn’t get to see most of it!). She went through so much, she lost so much; she just needed (and still needs) her space to be a child once again and find her place in this world. We therefore decided to go quiet, carry on with the alternative treatments and help Chiané recover by giving her the space she needs to be a child with no constant updates.

As most of you would recall; the year following treatment, Chiané received home schooling because of her immune system being wiped clean. After a lengthy process, we managed to get her re-immunised, got her Special Educational Needs Statement in place and she went back to mainstream school. It wasn’t long before her peers and friends outgrew her mentally, emotionally and physically. And it wasn’t long before her little brother overtook her academically. Another lengthy process and we managed to get her a placement at a Special Needs School.

This process was very tough on Chiané. She lost her friends and she lost the familiarity of the teachers. Adjustment at the new school was very hard on Chiané at first, and honestly, we did wonder if we made the right decision. But the long term pro’s outweighed the short term con’s of her being in a Special Needs School. She is now well adjusted, settled and happy at her new school. She will stay at this school until age 18.

Chiané also went through, and continues to go through, periods of depression, anxiety and mood swings. We tackle things as they arise. She knows she is different than what she used to be and she has a lot of things to accept, deal with and come to terms with. We have the support of GOSH neuro-psychology and their help has been invaluable.

We didn’t fully comprehend the massive impact her specific cancer treatment, the Milan Protocol with rapid radiotherapy, would have on her in the long run. Her primary conventional treatment was so new, even to GOSH, that the best consultants and doctors couldn’t prepare us for what was to come. They themselves don’t know the full extent of the long term side effects as there are no cases to compare it with.

Chiané is the baseline learning opportunity to establish the long term complications for the treatment plan she was on. After treatment, we were informed that the treatment plan Chiané was on, was terminated due to too many clinical failures and toxic deaths; a sad reality for many people fighting cancer.

We have also been informed by consultants at GOSH that they haven’t previously seen many of the post treatment changes Chiané has shown. They consulted other children’s hospitals like St Jude’s in the USA, who have also not come across some of her post treatment changes shown on her MRI brain scans.

Chiané stopped growing during treatment and 18 months after treatments due to the chemo and radiotherapy. In total, Chiané stop growing for two and a half years. This sudden stop in growth did impact her development that lead to all sorts of complication. One of many was her jaw, mouth and dental complications. Her mouth was too small to cope with existing and new dental development and her milk teeth (although extremely loose) didn’t come out. Chiané had 2 visible rows of teeth, top and bottom, both milk teeth and permanent teeth. At some point, Chiané was in so much pain due to dental pressure, she couldn’t eat for 3 months. We had to liquify her food or give her special shakes and smoothies so that she could drink it instead of having to chew it. Chiané had to undergo 2 major dental operations to rectify this problem. Chiané recovered well after her operations and was happy to be able to eat again.

Chiané’s endocrine system remains one of the worst affected by the chemo and radiotherapy cancer treatments. She is still receiving her daily growth hormone injections that we administer at home. She is on thyroid medication and she’s due to start oestrogen later this year. She is also on melatonin to help with her inability to stay asleep for more that a few hours. And this, together with other sleep therapies has only managed to add a few extra hours of sleep a night. By 4am (if we’re lucky!) she’s wide awake and ready for the day. This has a very bad knock-on effect on the rest of her day as she tires extremely quickly later in the day. Although Chiané is much shorter than her peers, she is finally starting to show good growth due to the injections we administrate on a daily basis.

Another post treatment complication we had to deal with was calcified skin cells in her ears that formed as a solid mass in both ears, that no amount of any of the different ear drops the ENT (ear, nose and throat) consultant gave us, softened. And before you ask; yes, we tried olive oil too with absolutely no luck. Because it was skin cells that formed a solid mass and not ear wax, and none of the drops helped to softened it, Chiané had to have an operation in both ears to have it removed under general anaesthetics. It was only when she has healed and went for her check-up and follow-up ear test, that they realised just how bad her hearing really was. Previous bad hearing test results was written off due to these blockages. We now have ENT appointments with hearing test every 6 months. Each time Chiané has a hearing test, the results comes back worse. The latest test revealed that Chiané has now lost around 80% hearing in her left ear and she can’t hear general conversations with this ear (the side radiotherapy treatment was given) and her hearing continues to decline. She will be fitted with a hearing aid to help her, though this might not stop full loss of hearing in that ear. An imprint of the inside of her ear was made and sent off. She should receive her hearing aid in the next few weeks.

Her ENT consultant also sees her for her mucus membranes that was damaged as a result of the chemotherapy and radiotherapy. She still continues to have a chesty cough and a runny nose since treatment ended in 2012 and everything conventional or alternative that we have tried, hasn’t helped with this complication so far. We continue to explore possible treatments for this.

Another post treatment complication is her eyes. Chiané is extremely photosensitive and has to have the curtains drawn when inside or wear polarised sunglasses when outside. Chiané is also seeing the ophthalmology consultant every 6 months. A couple of years ago, they noted cataracts behind both eyes. They’ve been keeping a close eye on this and we were told the end of last year that the time has come for the operation on the right eye. The vision in that eye has rapidly deteriorated to the point where she would have lost it completely if an operation wasn’t done soon. The cataracts has grown to the point where not having the operation outweighed any possible complications of having it. She had the cataract removed and a new lens implanted in her right eye on the 25th April. The eye is still healing and eye drops are administered every 4hrs. They will continue to monitor the left eye and we were already informed that an operation on that eye is in the near future. Chiané will wear glasses for the rest of her life, due to the artificial lens that was implanted. These artificial lenses can’t contribute to focus like normal natural lenses. Therefore, she will require glasses for near vision. We are hopeful that her vision and photo sensitivity will improve.

As a result of the radiotherapy treatment, Chiané has permanent hair loss at both the entry site and exit site. She has large patches with no hair growth and very fine hair at the areas where there is growth. As a girl, it affects Chiané greatly. Her self confidence has received a big knock and the constant stares from other children and adults makes her extremely self conscious. She doesn’t want to wear a wig (mainly because it makes her itch) and we respect this, but it has impacted her nevertheless. She is under the care of a consultant dermatologist who specialises in hair. Chiané has both, dormant follicles and scar tissue. She doesn’t make a good candidate for hair transplant as she doesn’t have enough hair in the ‘good’ patches to cover the ‘bad’ patches. We are in the process of ‘waking up’ and stimulating the dormant follicles. After years of expensive treatments that is not available on the NHS, we are now starting to see a difference in both the thickness of the hairy patches and hair growth in the bald patches. Although nothing can be done to stimulate growth in the scared areas, we are hoping to stimulate enough growth overall to help cover that up until an alternative treatment becomes available.

We are also keeping a close eye on clinical trials where they cultivate your own cells to make follicles; making hair transplant to bigger bald patches without using hair from another area on your scalp, possible. Given the demand for this kind of treatment, we believe this treatment will be privately available sooner rather than later and it’s definitely something we will consider for Chiané.

Another apparent problem is her digestive system that also received a massive knock from the chemotherapy and radiotherapy and it hasn’t recovered as yet. We are using alternative treatments and homeopathic medications to help her digestive system as much as we can.

Something else we never thought of was the decline in muscle growth, coordination, motor skills and balance. Back then, we had no idea that it will be a permanent problem, and certainly didn’t think that it will become worse once the problems were established. Chiané’s balance is so bad, she seems to fall over thin air for no obvious reason. Accompanied with her absentmindedness and forgetting to look what she’s doing and where’s she’s going; you have the perfect recipe for disaster! She falls over or knocks into something constantly. We have had many hospital trips as a result of her falling; where concussions were confirmed. The biggest scare was with a massive haemorrhage after a school playground incident and blood collecting in the cavity in her brain that took months to drain. Because of this, Chiané was referred to Orthotics and a special helmet was made for her that she now wears, mainly at school. We are hopeful that with the school’s onsite physiotherapist supporting Chiané, that this problem will not worsen.

In October 2016, we had our worst nightmares confirmed when her MRI scan revealed a white mass that wasn’t there on her previous 6 monthly scan. It wasn’t the ‘cloudiness’ that has been on her old scans. This was different, a solid mass that appeared from no where. We were told to enjoy Christmas and to come back in 3 months for another scan to establish the rate of growth of the mass. We all know that when StPNET relapses, it does so with a vengeance, like cancer on steroids. Spreading through the body like a wild fire.

We wanted to do an update then, but equality didn’t want word to get back to Chiané and we didn’t want friends and family to treat her differently or having sadness in their eyes every time they look at her. Children are just too fine tuned and feel emotions, they know when something is wrong. We decided to share the information with only a few people, and we carried this heavy load by ourselves and we created as many memories as we could in the time we have.

“How much time do we have?” Is a question no parent ever want to think about. We wanted to be prepared and had to get our ducks in a row; go to places in our minds no person should ever have to go to. The 3 months went by so slow and just too quick at the same time. Before we knew it, it was time for her next MRI scan. The days waiting for results is always tough, but it was brutal this time.

We made arrangements at both Chiané’s and Estian’s schools to take them out of school for one last trip to visit the family if Chiané did indeed relapsed. We were as prepared as we could have been by the time we went for the results meeting at GOSH. Walking into the consultant’s office was one of the most nerve wrecking things we’ve done to date. The consultant told us “whatever it was, it’s now gone. We can’t explain it, it’s just not there anymore. We can only put it down to post treatment changes”.

Can you imagine the emotions going through your body at that point? Utter disbelieve, extreme happiness, shock, relieve. We couldn’t believe our ears! The consultant showed us her previous scans where the mass was present and compared it with the new scans where no mass was visible. The rollercoaster of emotions from high to low to high is indescribable. We left hospital that day feeling like Chiané got another miraculous shot at life! To say we were living in hell for 3 months would be an understatement. We are now back to 6 monthly MRI scans and Chiané remains cancer free.

In general, Chiané is a happy child but it took her time to come to terms with, and accept her disabilities; something she still struggles with at times. She has permanent physical and mental disabilities that seems to worsen with time. She had to come to terms with not being able to do all the things she used to be able to do (from reading and writing; to gymnastics, running around and even little things like now unable to go on monkey bars). It really is a lot to take on board for any child; especially one that isn’t fully able to understand.

Chiané will forever be dependent on someone to look after her and help take care of her. It’s a tough balance of protecting her and giving her independence and we continue to learn each day.

We are still very busy with homeopathic medications and alternative treatments. Chiané have had and continues to have many hospital appointments and many clinical visits; both conventional and alternative. We are not going to go into details about all the treatments and medications she is receiving, hoping to keep the online criticisms and ill informed trolls at bay. However, we will state that we are still approaching her healing from a holistic point of view. From organic foods, to alternative treatments coming from the Far East, Europe, Canada and the USA. Once Chiané completed her primary conventional treatment at GOSH in 2012, we did not stop there. To us, it was the starting point of her alternative treatments because, we then had the freedom to take Chiané where we felt was needed. We crossed the globe and left no stone unturned to help Chiané fight her cancer and help prevent a relapse. We try to give her the best possible chance to fight and to keep her cancer away. Our main focus is for Chiané to have a quality life with the disabilities she has.

We might have been quiet, but by no means were we passive or inactive.

We are still trying to establish a ‘new normal’ as things keeps on changing and new challenges keeps on arising. For now, the most important factor is the well being of our children and allowing them to grow, explore and be as carefree as any child deserves to be. Updates will remain sparse in the future, especially with everything that’s been going on. We feel our first priority is to protect our children, one that every parent can relate to. But we thank you from the bottoms of our hearts for keeping Chiané and us in your thoughts and prayers.

Life remains a precious gift and we feel truly blessed.

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About Our Butterfly Girl

Charity based website to support Chiane in her battle against brain cancer.

Posted on May 15, 2017, in News from Chris. Bookmark the permalink. 4 Comments.

  1. Thank you very much for this update. I am so sorry that Chiane has to deal with so many problems, it breaks my heart. But i am also very happy that the cancer did not come back! I wish you all the best, i still think about Chiane very often. Chiane is ja very lucky girl to have such wonderfull parents, you do a great job. Greetings from Germany.silke

  2. Alex Anderson

    Thank you for the update. Sending you all love. xo From Australia

  3. Glad to hear your update! Lots of love to you all xx

  4. Thank you so much Chris,
    I new life had been very tough these last years.
    It was truely wonderful to see the photos of your very
    dear children.
    Chiane is amazing just to be here. So pleased the scan cleared.
    There are no words that really express how I feel only to say
    That I am glad you are all in this world as a beacon of hope, love
    And courage.
    Chiane always reminds me of your dear mother,Chris, who Chiane loved.
    I can see such a beauty growing in Chiane as she approaches adolescents.
    Thank you all for sharing your journey with me.
    Love as always
    Mary Kearns

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