Author Archives: Chris
I sincerely apologise that you all had to wait 8 months for an update. Hopefully you will all understand why it has taken so long, once you’ve read the update.
Things have been really busy and we are currently deeply involved with 24 different families who’s children have also been diagnosed with SPNET and going through the same circumstances that we went through. We have found that children who only receives primary care does much worse in general than children who’s parents are actively involved with their child’s treatment, with a hands on approach. We noticed that children who’s families are doing more than just primary care; who focuses on complimentary treatments and have a holistic approach, are doing much better during and after treatment. Because of that, we got involved.
Chiane only had her MRI scan last week and Monday, which was her follow up scan since January this year. It has been a very long stretch for us, waiting 8 months since her last scan.
There has been a few new developments but first of all, we had a meeting today at Great Ormond Street Hospital to discuss Chiane’s MRI results. It was good news but under unfamiliar circumstances. Chiane is still clean, and by clean I mean, there is no “solid matter” that is growing. However, there is constant changes in the fluids in her brain, and it looks like “white fluids”, that no one seems to know what it is, as it’s not something the specialists have come across as yet. You all know from previous updates that this is no new news, but what is puzzling everyone is that this white fluids is spreading…it’s not cancer, that has been ruled out since it’s not taking a shape of “matter” that takes up volume in the brain. It’s been confirmed that it is a fluid and so far, the only explanation is “post treatment changes” after 3 years. This is something we will have to watch closely. It has been a very long 2 weeks, waiting for the results. Our stress levels were high until we got the news today. It was a big relieve when we were told that her MRI doesn’t show cancer, but unease to know that there is some changes in her brain taking place and they are not sure what it is.
We have now entered a new phase on this long journey that was laid in front of us. Which is hormonal treatment. Since Chiane finished treatment, we knew that her whole lymph system switched off, including all functions of all her glands. It was very clear to us early on after treatment and it became more prominent as time went by. Chiane will be bone dry, while every one around her will be sweating in the hot summer sun. Everyone will have red cheeks while Chiane stays as white as a ghost. All her peers have grown the last 2 years and Chiane looks like a dwarf compare to her friends, as if she is 2 years younger than them. We had to push Great Ormond street extremely hard the last 8 months for Chiane to start hormonal treatment.
The aftercare of cancer patients in the UK is terrible and lacking on so many levels, which is something that every parent or patient will agree on. Getting primary treatment for cancer, is very good, but once they are done with you, you need fight your corner. It seems he who screems the loudest and making the most noise, gets help first. He who doesn’t, are left behind and forgotten. It has become very transparent to us that aftercare in the NHS is under staffed, and we had to fight and scream for Chiane to get what she really needs. Once they hear you, the care and service is good, it is there, and it works well, it’s just getting it in the first place and then staying on top of aftercare putting pressure on aftercare consultants that takes time, until they hear you and take notice. We have been putting pressure on the aftercare since January this year, and it felt like we did enough blood tests to last us a life time. It was test after test after test before they finally said in August, “Chiane needs hormonal treatment”, which we knew and they knew already. It was a painful 7 months getting to that point, but we got there eventually.
They required “indisputable proof” that Chiane needs hormonal treatment before they do anything about it. Us saying she doesn’t sweat at all, or she is gaining weight despite eating healthy and exercising, or that she has grown 1 cm in 2 years falls on deaf ears.
Once they agreed Chiane needed hormonal treatment, her case are put forward to the UK medical board, as hormonal treatment are strictly controlled in the UK and has to be approved by the medical board before anyone in the UK can get it. You consultant or doctor can’t just go ahead and prescribe it, it is strictly controlled in the UK.
Chiane finally got approval and she started treatment to kick start her thyroid gland again as it was not working at all. We administrate it at home, and it’s our responsibility to make sure she gets it on a daily basis. Within a week we saw healthy looking red cheeks for the first time since she was diagnosed with cancer in June 2011. I know it sounds silly, but we cried with happiness the day we saw that. We were extremely emotional that day. We waited 3 years to see our little girl with healthy glowing red cheeks. It was beautiful… Something people just accept to see looking at their kids running around, we came to wish for our little girl…and it finally happened. Chiane has been exercising every day, but dispute doing exercises, yoga and eating healthy, her weight was a challenge. She gained a lot of weight. Since we started the thyroid treatment we slowly saw her weight coming down to a more healthy level in the last 6 weeks. When she’a outside, she sweats a little and her cheeks is red. It’s so beautiful to see that.
Other than thyroid treatment, Chiane also started on growth hormone treatment. Chiane has to get an injection every morning at home, and we administrate that too. It is part of her daily routine now and it will carry on until she is a woman in her late teens or early 20’s.
Blood tests will be done every 6 months and analysed. The dosages of her hormonal treatment will be amended accordingly to the blood results every 6 months. It was hard, difficult and time consuming getting to this phase but we finally got there in the end.
Both Chiane and Estian are on a very intensive integrating holistic care plan that still involves a lot of organic food, eating healthy, a lot of various homeopath medicines on a daily basis, and complimentary treatments that builds their immune systems from time to time. Yoga and stretches has become a daily routine for both of them and they enjoy it. An intensive integrating holistic treatment plan is extremely hard work, and we have a lot of balls in the air, but we are doing it with a smile! A holistic approach does involve a lot, from special water they have to drink, to special bath water, to a radio active free home, to air purifiers, to water filter systems, to electric pulsing to balance the body etc. Some might frown and say it’s too much, but if you as a parent come face to face with this deadly illness, and you look your child in the eyes, and you know maybe in 6 months you won’t hold their warm body in your arms… You step it up and you don’t leave any stones unturned.
Schooling was a very difficult choice to make. We didn’t know if Chiane should stay in a “normal academic school”, or if she should go to a “special needs school”. It was clear that Chiane needed help, more help than what she had in January. The radio therapy and her harsh cancer treatment did leave her with a permanent academic disadvantage to those of her peers. She struggles academically. Everyone around her in class was accelerating while she stood still and we knew it was something that we needed to sort out but we didn’t know what was best for her. And so began a long 6 months of fighting for her and what she needed.
We wanted to keep Chiane in a normal academic school. We felt that this would give her as much normality as possible and prepare her for life after school. Keeping Chiane in a normal academic school would only work to her advantage, if she got the academic support she needs, and it was clear despite the schools best effort, and doing everything they could with the resources they’ve had, it just wasn’t enough for her requirements.
We felt a special needs school would cover her academic requirements but they would also bubble wrap her which we didn’t want for her, because life in the real world is not all sunshine and roses. It’s much tougher. We established in a special needs school, they very much go on the vibration of the child and if the child don’t want to do something, they don’t push the child harder.
Real life doesn’t work that way, and sometimes, it doesn’t matter if you like something or not, you still have to do it! We felt a special needs school, didn’t cater.
We felt if Chiane was in a normal academic school, with Chiane among her peers, it will pressure her to work harder. It was tough choices that we had to make. If only we could keep Chiane in a normal academic school but with the extra special needs support she would get in a special needs school, that would be perfect. Integrating the best of both worlds will be the best option for her. So we began the long battle to get just that for Chiane. We spoke to local authorities, the school which already did what they could, the UK educational school authorities and we eventually got an educational psychologist on board who was appointed by the educational board to evaluate Chiane. It took months and months of meetings, paperwork, knocking on doors, and we had to get a private organisation on board to help fight our corner. The school joined in and helped us, and after 6 months of endless paperwork, we got what we wanted.
The educational board with the local authorities, build a special needs academic plan tailor made to Chiane’s academic requirements, based on the recommendations of the educational psychologist and the school board. Additional funding was pumped into the school by the local authorities, and a care plan was put in place with staff for Chiane to cater for her needs. After a long struggle we finally got Chiane what she needed. She is still in the same academic school, but with an academic plan tailored to her needs. She is very happy in herself. She still has her friends and her brother in the same school, but with much more academic support than what she had. Chiane started full time schooling from September this year. It was the first time she went to school full time with all the other children since she was diagnosed in July 2011. Prior to September, Chiane only started school at 10:30 am, but now, she is going to school in the mornings with her brother when school is suppose to start. She looks very happy in herself.
As for the genetic treatment, we are not quite there yet. Lynch syndrome is something that can spark her cancer to start at anytime again. For those that doesn’t remember, Lynch Syndrome is a genetic defect that makes you more susceptible for cancer and when you’ve had cancer you a more likely to relapse than those who doesn’t have it. Since Chiane was diagnosed, and various genetic tests were carried out on her, they eventually looked at me and tested me. I was diagnosed with Lynch syndrome too. I volunteered to be the guinea pig because we felt Chiane has been through enough, and she had to underwent a lot of testings herself regarding the hormonal treatment, etc. Until such time, that we have a solid cure for it, I will do the testing relating to lynch syndrome. Needless to say, the last 8 months has been anything but pleasant. Tests after tests. I feel like I’m getting attacked by vampires looking for blood. Some tests are painful, some tests are extremely uncomfortable, but I do my part in the hope they will have something soon. I’ve had more endoscopy’s to last me a life time. They have covered a lot of ground the last few years in this field and many lynch syndrome studies are being carried out, the most advanced are being done in Germany and Switzerland at the moment. Until there is a way to alter this syndrome to a less threatening state, there isn’t much that we can do relating specifically to genetic treatment. We can take Chiane and Estian for genetic treatments, but what is out there at the moment, will not help specifically for lynch syndrome. It’s a waiting game at this stage for us and we hope they will make a satisfying break through soon in the future. Until then, we can only keep going with the holistic approach, alternative complimentary treatments, immune treatments, eating healthy and do what we can to deprive any cancer growing again inside Chiane.
In July, we lost my mother and it was a massive set back to both Chiane and Estian. Losing their grandmother had a huge impact on them, because they were extremely close. It has been 3 months, but it has hit Chiane very hard. She is a happy child during the days when she is kept busy, but evenings and weekend she is very quiet and often cries about her grandmother passing away.
Again, I apologise for not doing an update sooner. As you all can appreciate, we had a lot on our plate, relating to Chiane, research, personal family matters, helping other families who’s children have cancer and it all was very time consuming issues we had to deal with. I am very pleased though, to share the good news with you all relating to the last 8 months. We still have a very long way to go, we barely started the hormonal treatment and we still have many other issues to address. Hopefully in a few months time, we can give you all some more good news. Thank you all for your patience to date.
I lost my dad when I was 20 to cancer and it changed my life for ever. A child should bury a parent, the thought of a parent burying their child is something I struggle to accept. I had a quiet chat with a very good friend of my dad in July this year. He is a close family friend of ours and he said to me something that struck me hard. He said “Chris, if God stamped your passport to go to heaven, you can do all the holistic treatment you want, it won’t work and he will take Chiane if her passport is stamped”. It made me think a lot, just that 1 sentence and it’s very true. We are instruments in His hands and we do what we can, but ultimately it’s His will that Chiane is still with us. I know of thousands of people that prayed for Chiane, and for us as a family to carry us through this, and to all of our friends, family, and people we don’t know that prayed for Chiane…. All we can say is thank you and don’t stop praying with us…
Good evening to you all,
It has been a few months since my last update.
Chiane had a MRI scan on the 6th of January 2014. As always, waiting to hear the results is always a stressful time for us. We had a meeting today at Great Ormond street hospital to discuss the MRI results and it is good news. Chiane’s MRI scans were all clean. It’s almost 2 years worth of clean scans since the end of treatment…her next scan will be in May 2014.
Hormonal treatment is next on the agenda. The end of the month, on the 31st of January, Chiane will be at GOSH all day. They will carry out various tests to establish her hormonal levels. We knew this day was coming, but it is another day that we don’t look forward to, although we are fully aware it’s needed and very important.
The radiotherapy stopped her endocrine system completely which means all hormones came to a halt, including the growth hormone. The tests they will carry out the end of the month will give us a good picture of the various hormonal treatments she will receive. This means, we will need to give her an injection every morning… The hormonal tests will be carried out every 6 months, and the treatment will be altered according to her hormonal “disfunction”. This means, Chiane will receive injections, every day of her life, starting the end of the month until she is 18 years old. Another “new routine” she and us as parents will need to get use to. I’m not looking forward to giving her an injection every morning.
Schooling is extremely challenging. Although Chiane loves being back at school, and being back with her friends, academically, it’s a tough uphill battle. Her school is going out of their way to support her on her level, but mainstream schooling is starting to affect her because she “can’t do what her friends can do”.
As Chiane consultant at GOSH explained today: “having educational problems is the price you pay for clean MRI scans as her brain was fried”. That is very true.
We worked extremely hard getting Chiane back into main stream schooling by giving her home schooling 1-1 with specialist in the field of working with children who had occurred brain damage. Being back in school, although very good socially for her, is slowly starting to have an impact on her academically. It won’t get any easier on her, only harder as schooling will accelerate…
We decided last year that we would first give main stream schooling a fair chance, but if she does find it extremely hard, we will take her out of school.
As things currently stand, we will be taking her out of school at the end of the academic year in September. Finding a specialist school for her needs is a challenge on its own. Most specialist schools are for severely disabled children who are both “fragile physically” and “delicate mentally”.
Chiane would struggle in these type of specialist schools as she is not “physically fragile”.
We eventually found an outstanding school catering for her exact needs. A specialist school catering for children who are not physically disabled but “mentally delicate”. Instead of mainly focusing on stream line academic work, they focus to prepare children for “life after school” to be independent adults…
Each child are evaluated based on their mental capabilities and then classes under bronze, silver or a gold curriculum. Although they still focus on reading, writing, maths and chemistry, it will be done on their level, in a fun learning environment. Children are taken in from the age 8, and they stay in the same school until 18.
The school has daily physio-therapy which is extremely important for Chiane’s muscle growth, they focus a lot on cooking, how to carry out daily tasks safely like working with oven etc, how to work with money, the importance of income vs bills on a very simple level. When children are done with schooling, they are able to be independent in all aspects of day to day tasks. It’s driven on very practical work and daily tasks.
As things currently stand, we can see Chiane’s friends are slowly outgrowing her and the gap will only increase. She is almost 8, and she has a mentality of a 5 year old. The school Chiane will be going to, she will be able to build new friendships with children on her level, growing at the same rate as her, which will be much better for her on so many levels. Weekly tasks will be giving to her on her mental level and rewarded on a weekly basis once she accomplished it. It’s important that Chiane needs to feel good about herself and that she can reach her goals to motivate her positively.
The specialist school we found cater exactly for all these needs…
Gene targeted therapy is still an ongoing battle. We have covered a lot of ground on this subject. I have undergone a lot of blood and gene testing. Some days I felt like vampires was draining all my blood out if me with all the tests that were carried out.
We have an extremely detailed gene mapping after myself, Andia and both kids were tested. We know what went wrong genetically and finding the correct counter treatment to fix it is the challenge. We are working closely with Germany and Switzerland, both doing a combined study specially focused on our genetic requirements. As things currently stand, hopefully June is the time we will sort this out. We keep pushing it back as we need things to be done right. If its not right and tailored to Chiane and Estians genetic requirement it’s pointless and a waste of money, so we have to get this right.
As always, we are still very focused on organic healthy food, lots of homeopath, alkaline water, exercising, etc.
It’s an ongoing battle and new lifestyle that we all had to adopt to. In general, Chiane is a very happy child and she does have a good quality life at the moment.
I will do another update in May after her next scan.
Thank you to everyone who is still supporting us on so many levels!
Good day to you all.
It feels like we are slowly gaining back some form of normality. It is a new type of “normal” for us and nothing like what our old lives use to be.
Chiane had an MRI scan last week (02/09/13) and we went to Great Ormond Street Hospital yesterday (12/09/13) for the results. I am very pleased to say it is still a clear scan. I say clear, but it is not as black and white as you might think.
There is “something” but all the specialist (a team of 40 people) who reviewed Chiane scans feel it is nothing to be concerned about. It is the same “something” she has had on previous scans, but it keeps increasing in size. The “something” is the same matter and density than the rest of the brain. Cancer has a completely different matter, density, form and shape. Therefore, the overall feeling is that the “white cloudiness” on her scans is not cancer (it’s not a mass), but still post radiotherapy changes in her brain itself. These changes that are occurring in her brain are still taking place in her motor-skills part of her brain, which is slowly causing Chiane to “regress” little by little and she will continue to “become more and more disabled” until these changes in her brain stop. This is all due to the damage caused by the cancer, operations, radiotherapy and treatment itself. As far as her movement is concerned, she is going backwards slowly and she will continue to go backward until she reaches a stage where healing is complete.
Chiane loves gymnastics. She has had to come to terms and except the fact that she won’t be able to continue gymnastics, but she is very positive and where one door closes, we are forcing another open.
What did we do over the last 4-8 months?
Chiane got all her vaccinations again. It was important for us to get this sorted so that Chiane doesn’t have to be in “isolation” anymore, and it is to enable her to travel abroad. We focused extremely hard on her genes. The last year we kept testing her and Estians genes every 3 months. The homeopath we are using does not fix her genes, but it does change the protein levels in her genes. The homeopathy is a temporary solution helping her body, and preventing her body from developing faulty or defect cells. Her protein levels are fantastic at the moment and we keep it doing to improve her body.
Chiane still has private schooling at home until 11:30. A big thank you to West Lea school supporting us at home with all the academic challenges. We have a teacher coming home every morning, who is a specialist and trained to work with children in Chiane’s situation. Chiane’s teacher, Lesley works with Chiane Monday to Thursday until11:30 am.
Chiane is going to main stream school from 12:10pm to 3:30pm in the afternoon. 12:15 to 1:15 pm the school has a break for lunch and play. This is extremely important for us so that Chiane can start socialising with her peers again. A massive thank you to her school, De Bohun, who have went out of their way to help and support Chiane and help give her a soft landing in school. The school came under new management a little while ago and the support we are getting is fantastic. The school has dedicated and allocated a teacher to Chiane, supporting her academically, in class, sitting next to her.
It was decided that Chiane will only do a few hours main stream school a day, because she gets tired quickly, and this is as much as she can cope with at this point in time.
When Chiane was diagnosed, her brother Estian was only 2 years old. Due to the nature of the beast, his whole little life was turned upside down. There was no stability, no routine. He didn’t have a clue what was going on, and due to many late meetings at Great Ormond Street Hospital, Estian often went home after nursery with staff from the nursery who supported us. By the time Chiane was done with treatment, Estian was a mess… He stopped talking, he had very little security, and this whole routine of never being home hit him very hard. He had so much anger, and we in many ways neglected him. The last year we threw everything in to help Estian overcome this trauma. We felt so guilty and it felt like we failed Estian. We were so focused to get Chiane through this terrible situation, that Estian was left behind despite our best efforts as parents not to neglect him. The last year we worked with 6 specialist to get Estian back on track. We worked closely with a speech therapist, a behaviour therapist, a clinical psychiatrist, a play therapist, a paediatric phycologist and a social worker. It took 8 months before Estian started showing results and it was only in the last 2 months that we saw real positive results. It took us 8 months to potty train him, and he regressed backwards but we finally got our son back. We focus hard on his development, his anger, his emotional insecurity and we build him up again. The guilt we had to swallow was a very bitter pill. We tried our best while Chiane was in treatment but despite our best efforts we did fail him. A very big think you to Enfield Council who worked closely with us, listening and helping us, who have dedicated such a large team and threw endless amount of time and resources in to help us with Estian. We gave him so much love and attention when we could, but it was not enough. It’s only after Chiane was done with treatment that we truly could dig our teeth into Estian and nurse him to the happy child he is today.
I can, hand on heart, say that both Estian and Chiane are now at a point in their lives where they are happy. They have structure, stability, and both children are equally happy and it took a lot of hard work to get here.
Estian started school this week and Chiane started school last week.
Our next challenge is to get Chiane to develop and improve her social skills, because she was in isolation for so long and for most part, the only people she mixed with we’re adults. It is a very scary feeling for us to let go a little. We know it is extremely important that we do so, to help her build her confidence, and to have her own little bit of independence. We still have many challenges to overcome. We signed Chiane up in to music and acting school which is on Saturdays, to replace the routine of gymnastics she use to have on Saturdays.
It’s important for us that she feels good about herself, and to get out there and explore the world again. After endless and endless amount of meetings, talking to various specialist it became imperative that, what both Chiane and Estian now need, is a childhood life after 2 and half years of daily appointments with various specialist. From gene specialists, to physio specialist, to GOSH, etc. It was an endless list of non-stop appointments. All both kids got to know was the “medical field”.
It was the general feeling of everyone involved, including us as parents, that what both children now need, is a “break” to be children again, which both have forgotten a little. Both are at a point in their lives where they need this more than anything. There is no point in fighting something as horrible as cancer with little reward. For us as parents, yes, her life is our reward, but Chiane and Estian, two and a half years of not being able to be children, is an eternity.
What will happen next?
We have set out a few short term goals, medium term goals and long term goals.
Our main aim now is to give both Chiane and Estian a break and let them be children. They both worked so hard and they deserve this! We are continuing the organic food routine, and we are hunting down organic farmer markets as we are supporting local farmers as much as possible.
We see each 3-4 month MRI scan as a battle. So far we are winning each 3-4 month battle but this cancer war is still far from over. We can not let our guard down. Both Chiane and Estian are on strict healthy nourish- and organic nutrition. We change the homeopathic medication according to the 3 monthly gene testing. They drink 9.5 alkaline water, and we still make their juices from scratch. All food we cook are made freshly like chicken nuggets, we know what’s in it because we make it. Chiane still does hyperbaric oxygen therapy, amongst other things.
Keeping this cancer away and not give it an opportunity to come back is very important. We are doing this by creating an “unfriendly environment” for this cancer. By keeping their bodies alkaline, by eating non-toxic food, by using lots and lots of homeopath medicine and by building their immune systems to a super state. All it will take for this cancer to come back, is to drop our guard, stop doing the above and give this cancer a fighting change to come back and we do not want that!!
Their bloods are looking good, their proteins within their genes are looking good, so it was everyone’s feeling that now is the best time for them to start schooling, and to have and gain a form of a new normal life.
Our medium term goals are for both to still get gene treatment, which are still an ongoing process. We found a few centres, and after many discussions, most included more chemo. We felt it is not the right path. We feel more chemo is not the answer, breaking down their bodies through more chemo, after getting it to a state where their bodies are so healthy, and making it so unfriendly for cancer to grow in, is not the way forward. The goal is now to work with the main stream schooling system. During school breaks, we aim to go abroad for further treatment. Germany in the spring (2014) and Ohio in the summer (2014). By then, both kids would have a steady rhythm and routine in school. These treatments will not keep them away or out of school, since it is non-toxic complimentary treatments. All future treatments needs to compliment what we are doing, and not hurt her, or break her body down.
Once both kids have settled in school, and we addressed the genes, we will focus on Chiane’s hair.
Yesterday we discussed with Great Ormond Street Hospital, new types of techniques to help Chiane’s bold patches on her head. We decided not to go with the traditional hair implants, as it is extremely painful and after everything Chiane has been through, whatever we do, needs to compliment what we are already doing. Hair transplant is another challenge and we had to dig a bit deeper with our research.
We spoke to GOSH regarding new hair growing techniques. A small insertion is made on the border of the hair line, between the patch that has hair, and the patch that has no hair. A balloon are then inserted below the skin but above the skull and then filled up. This process will stretch her skin, the part that has hair. Once it’s stretched, the skin will be moved over the bold patch. We will only gain a few centimetres each time they do this, so it will be a process of going in, inserting a balloon, coming home. Leaving it to stretch her skin, go back in, remove the balloon and move the skin with hair that is stretched, down over the bold path, come home, let it heal. Then the whole process starts again and we continue this process until her head is covered again with her own hair. It’s very new technology, with much less risk, it’s not painful and Great Ormond Street Plastic surgeons will be in charge of this process. This is not something that we will do right away, but in 2 years.
This is the plans over the next 2 years. The war is far from over. We focus on 4 monthly battles making sure we keep those MRI scans clean. Most children relapse in the first year, but once we crossed that line, the battle only increase to keep it away, because some still relapse in year 2-4 after treatment.
2014 will be gene treatment.
2015 cutting edge hair implant technique.
2016 we will hit our 4 year all clear mark if all goes well, then we can breath again.
Thank you to everyone for their continued support. I apologise it is such a long update, but I felt it was needed to bring everyone up to date.
Good evening everyone,
Tonight, I am not going to give you an update regarding Chiane. I want to talk about a friend that Chiane made whilst in hospital at Great Ormond Street.
I will never forget the first time that I met Sophia in hospital. I can only describe her as an “English Rose in the making with the humble smile of Diana”. She had the most beautiful red hair, and her eyes were filled with intelligence and love.
We got to know Sophia’s parents, Rob and Christina, and quickly became friends with them. It’s very difficult to explain it, but when your child is diagnosed with something like cancer, your whole world stop. You are torn away from the life as you know it and you are almost like a fish in a fish tank. Life around you continue… But you yourself, are in this bubble, in this fish tank, in a completely different world, that the outside world has no clue about. The only people that truly understand you, are those who are also in your situation or position. As parents, we use to meet up in the kitchen after our kids were sleeping, a “quick coffee” or a “quick dinner” and in those 10 minutes at 1 am in the morning we don’t say a lot or we do say many things. Our eyes and faces spoke a million words. You could see as soon as a parent walked in, if it was a “good day” or a “bad day”. We become like a family, we support each other, we listen to each other, we off load and vent now again, we motivate each other, we share information and knowledge… And sometimes crossing paths in the corridor during the day, a glance could say a book and we understood each other without exchanging a word… “Just keep going….”That is how we got to know Rob and Christina…we all would get excited for one another when out children’s platelets or white blood cells were above a certain level, or the stool colour changed etc. The small things excited us.Then comes the end of treatment, the phase of excitement until you are home for a little while and you catch yourself thinking…”what if my child relapse”. That is a feeling that haunts you, constantly…
Good afternoon to you all.
Chiane had a MRI scan on the 7th of May 2013. We had to wait two weeks for the results. Today, we had a meeting at Great Ormond street to discuss the results (21st of May 2013).
I am pleased to say we have good news once again. It’s still all clean. Obviously MRI scans can not pick up “loose floating” cancer cells, only lumps or tumours.
However, it’s all clean. This is very very good news. The part I hate the most, is the waiting period between the MRI scans and getting the results. Everything is going well until Chiane has her MRI scans, then the sleepless nights kicks in and I start to worry. I often find myself staring at the ceiling at 3 am during the night. I struggle to sleep and I constantly walk around thinking about it, until we hear the results… Then I’m all good until the next MRI. It’s something you don’t wish on anyone, to say the least.
Chiane’s immunisations started only at the end of April (and not as scheduled/ planned to start the beginning of March). We are running a little behind schedule but the plan still is for her to start school in September this year.
Schooling still continues as normal at home, with the help and support of specialist visiting us every day at home.
Chiane and Estian’s latest blood results are very good. We have therefore slightly decreased, the amount of homeopathic medicines, they take in on a daily basis. The homeopathic medicines have come down from 36 to 25 a day. Some medicines they will be on for life, but this has become 2nd nature on a daily basis for them.
Obviously, we still continue with organic food only. This is 2nd nature now, and part of our daily life’s for over 2 years. The kids eat no crap or junk food that can hurt the body, everything we make, we make it from scratch in the kitchen, no matter what it is. It is so vital to stop eating food the harms the body and to eat food that is healthy, food that builds up the body.
We still have the air purifiers cleansing the air in the house, we still continue with water purifiers, water alkaline machines, hyperbaric oxygen therapy, bathing in special products that kills off anything on their skins that is harmful.
The kids still eats no sugar products, unless its in its natural form like fruits. Fighting cancer is a never ending battle but its not difficult once you get into a routine.
We still go to the park once a week, getting them to exercise on all the different climbing frames. They still jump on the trampoline and Chiane’s energy levels increases slightly, month by month. When she came out of hospital, after treatment, she was so weak, I had to carry her up and down the stairs. She would be flat and tired after walking around in the house for 5 minutes. At this point and time, she can play and run like a “normal child” for an hour and half before she hits a wall. Because of the treatment and brain damage caused by the tumour, Chiane has a slight “disability” in her legs and arms, but it has become a new normal for her. We are teaching her how to adopt and how to work around it.
The most important thing is, she is very happy in herself. She never complains and she always has a smile on her face.
Above all, nothing of this is possible, without mercy from above. We are so grateful and relieved that Chiane is still with us, healthy and cancer free. The All Mighty decided that its not yet the end of her journey, and for that, we are grateful.
Thank you to every one, that has been so supportive, through all this time… for your words of hope, for your prayers, for your time helping with donations and fund raising, for your emails, cards, text messages, flowers, for dropping off food, help around the house, none of this would have been possible, if it wasn’t for every one that supported us, on way or another.
When the immunisations are over, the next step will be gene treatment, then the transition from home schooling to main stream schooling.
Chiane will get her MRI scans every 4 months now, instead of every 3 months. Her next MRI scan will be in September just before she goes back to school, and then end of December/beginning of January 2014.
I will do another update when I have more news regarding the gene treatment.
Good evening to you all.
Chiane had a MRI scan last week and today we went to Great Ormond street hospital for the results.
Chiane finished her primary treatment last year February, and today we were told that her scan is clean. Chiane passed the first year after treatment, which is a golden mile stone to reach, for children that are diagnosed with StPNET. We were so relieved to hear the good news today!!
Chiane had various tests done at GOSH the last few weeks. The main focus was psychosocial testing to establish her mental capacity for schooling, memory, learning etc.
What will happen next?
Over the next 3 months (March, April and May) Chiane will receive all her immunisation again. It’s a long list of immunisations but its important for her to receive it. We were told she might get sick during the next 3 months, because the immunisations will follow each other fast and hard, with very little gaps between injections.
Then we will be off for Gene treatment (June-Aug). With the help of GOSH, we found a specialist that was the leading gene specialist in the USA for Lynch syndrome. We have been told that he recently was offered a position in Germany, and he moved from the USA to Germany. Our understanding is that Chiane’s consultant provided him with all of Chiane’s medical files, scans and medical history to bring him up to date. He agreed for us to contact him directly. Initial introduction will take place in the near future, and our goal is to go to Germany (June-Aug). First priority is immunisation, so that Chiane is able to travel, to receive her gene treatment. More information regarding the above will follow during the next few months.
September, Chiane will start main stream schooling with the support of external specialist.
I will update you all again on the 7th of March when I have more information regarding the psychosocial evaluation, recommendations and results.
Physically, Chiane is in a very good shape. All test carried out today showed that she is physically in top form.
For now, schooling continues as normal at home until September. Our goal is to get her back in to school by September when the new academic year starts.
Chiane is still on 36 homoeopath medicines and 3 alternative treatments. Today was a good day. The 1 year clear MRI was a huge relief for us.
Thank you all for your continuous support and prayers.
Good afternoon all.
Chiane is doing as well as can be expected. The main thing is, she is still going from strength to strength, but all the treatment comes at a price.
We have our concerns, but it is good concerns to have. By good I mean, she was not alive, we would not have had these type of concerns, like schooling for example.
Chiane has mentally regress 2 years backwards. She turned 7 last week, and her whole persona is that of a 5 year old. Taken in to account what happened to her, and what she gas been through, she risen above it, and she is a very happy child. She has her moment of course, when she feels sad, or tired, but in general, she walks around with the biggest smile in her face.
We are edgy to move forward with the gene therapy, but 2 things needs to happen before she can starts gene therapy, or schooling, or move on with her life for that matter:
1). Immunisations – when people in general get chemotherapy, there is no need to go through immunisations again. However, if a person had HIGH dose chemotherapy, and it involves stem cell harvesting before treatment and stem cell rescue after admitting the high dose chemo, then it wipes out any immunisations you might have had in the past. The guidelines state, after high dose chemo, that requires stem sell rescue, the waiting period is 6 months before Chiane can receive her immunisations again. However, Chiane received high dose Thiotepa chemo twice, which means, she had to wait 2 x 6 months/a year before they can administrate immunisations again. Over all, Chiane is very healthy, her neutrophils and white blood cells are very good, she eats lots of organic food, and she is still on lots of homeopath medication. However, she is almost like a new born baby, should she come in contact with people who has polio, or rubella, or meningitis C, she can get it…the chemo wiped it all out, completely.
Match this year, it would be a year after her 2 high dose chemo’s, and Chiane will qualify for all her immunisations again, like the illnesses mention above, including Diphtheria, Teranus, IPV, MMR, PCV etc.
Should Chiane go to school, whether its a normal school or a special needs school, or travel abroad, she is at risk of getting any of the above illnesses, due to her immune system being “blank” with no immunisations. At one point we were willing to risk it, but after carefully thinking and after lots of discussions, we decided to wait until she has received all her immunisations again. It will be ironic fighting brain cancer, only to possibly die of something else. She has enough on her plate, fighting cancer and possible getting polio along the way because we as parents were not patient enough, will be ironic. In March, Chiane will start getting her immunisations again, by June, we hope she would have received all her immunisations, and it will be safe for her to travel.
2) A Gene treatment location – we spoke to, followed, and monitored a few children closely, that did go to Burzynski, and we feel Burzynski is not the way forward for us. Although Burzynski is very good, we feel, what Chiane requires and needs, is somewhere that focus more on her Gene dysfunctional diagnosis, which is lynch syndrome. We did have long meetings with Great Ormond street, and our consultant agreed to try and find a different location for Chiane to go to. At the moment, it looks like ST Jude’s children’s research hospital in Memphis, Tennessee (USA) or possibly, MK in New York (USA) are two options on the table, but it is early stages, and still only in a discussion phase. Nothing has yet been agreed.
Schooling is tough and we are extremely patient. Chiane gets 1-1 schooling every day at home. She has good days and she has bad days. Some days she is “switched on and alert”, and can concentrate well, other days she is just not there at all, and we swap schooling then for piano classes when she has her off days.
Some days her brain works well, some days her brain struggles, and it is frustrating for her. We do not push Chiane at all, and I have to admit, one thing we are very happy about is, is that Chiane is extremely eager to learn, she is extremely motivated, and she stays positive. This is all good!
Some days she will sit in front of a book, and it will take her 10 minutes to read 1 line: “the cat sat on a matt” for example. She will sit and try and try until she can read it…even if we tell her to take a break, she will be determine to move until she gets it.
Some days Chiane will describe something because she forgot its name, for example: she would walk up to me and says: “daddy, you know that thing I sat on”. Then I would ask her what it’s called, and she would say “I forgot!” It frustrates her a lot… But 2 hours later she would come running in with a big smile on her face saying.. “It’s a chair!!!” And laugh.
Some days she forgets our names, basic colours like red, blue, green, yellow…some days her fingers will stop working, and 3 hours later her fingers starts moving again.
At this point and time, her brain is adjusting, finding new path ways, repairing itself die to the hash treatment. We are just extremely patient and we don’t push her at all.
Every day that goes by, I look at Chiané, with admiration and I am so proud her. As an adult, I have learned a lot from my 7 year old girl. She has so much motivation, dedication, and perseverance. She refuse to give up. If she struggles with something or a task, she would stop, walk away from it, but she keeps coming back and try until she gets it right. She never complains, and she does everything with a smile on her face even if she struggles. Yes, at times she gets frustrated, but then she just laughs, shake her head and says “I’ll get it right”… And she always does. Her inner strength to not let cancer ruin her life, is remarkable.
She would master something new, 2 days later she would forget how to do it, and she tries again and again until she can master it…she just keeps going until she can do it.
We are trying something new with Chiane, “less is better sometimes”. If she push and push herself we would stop her and say less is better, stop, and leave it for another day. We would constantly have to tell her that because she would just come back and try again. We found by doing less, and focus only on 1 thing, she makes better progress. Instead of doing maths, and reading, and time, and music etc, we only focus on 1 thing for a few days, and we are making progress. It’s slow progress, but never the less, it’s progress.
Chiane has been to GOSH a few times already this year, and she has a few more appointments in the next 4 weeks which I will cover later in the week.
Thank you all for your continues support, and prayers.
Good afternoon to you all.
Good afternoon to you all.
Chiane is doing as good as can be expected. Her casts have been removed a few weeks ago and it seems to have done the job. She is off her tippy toes. She struggled to walk for a few weeks but her walking has improved a lot.
She has gained weight and she is eating very well at the moment. We are still continuing with a vigorous course of homeopath medications. The centre of focus is still very much her genes. The latest gene report have shown some improvement and changes in protein levels in some genes that were previous faulty – are showing normal protein levels. There is still a long way to go.
Schooling seems to be a challenging uphill battle. Chiane is working extremely hard. She is dedicated and motivated but progress is extremely slow. We have noticed that Chiane, unlike other children learning something new, and pick up where you left off the previous day… Chiane can not do that. Everything she learned the previous day is forgotten the next day, and we have to start all over again. We have bought additional material to help with learning, building her concentration, building her short and long term memory, and we are starting to make progress, but it is slow.
As things stand at this point and time, Chiane won’t be able to go back to a ‘normal school’. We are waiting for an evaluation to be carried out on Chiane, and the general feeling is that Chiane will need to go to a ‘special needs school’ for the time being until she starting to make some improvement before we will even consider placing her back in to a normal school system. This really breaks our hearts but we are not putting pressure on Chiane. She is working very hard, and we can not expect more of her.
We have realised that she exceptionally good at music, and for some reason she can continue with music where she left off the previous day. Maths, reading and writing (hand control movements) is a challenge at the moment. We are continuing with the home schooling because she needs 1 on 1 education.
Every day after school, Chiane is stretching her legs and her muscles. The chemo really tightened her muscles, and she is making very good progress at the moment. Once her muscles are loose enough, she wants to go back to gymnastics. She is very determent to go back to gymnastics as soon as her Hickman lines are removed, which is currently still connected to her heart and used on a weekly basis to carry out blood testing.
Chiane’s next MRI date is the 26th of November, and we are meeting with her consultant on the 6th of December to discuss the results. Based on the MRI results, it will be decided if Chiane’s Hickman lines will be removed or not. If the MRI is clean, her Hickman lines will come out, if the cancer is back, then we will keep them in.
Chiane is now strong enough to travel. Her weekly blood results have been stable for the last 7 weeks. Based on her blood counts. platelets, white blood cells, neutrophils and red blood cells, its all looking extremely good. Pending her MRI results, we will decide where to go for final treatment. After speaking to a few patients that have recently been to the Burzynski clinic, and speaking to people who have been treated there this year, we brought it back on to the table. Chiane will start a maintenance program in Texas and we will be going to Colorado as well. Colorado and Denver specifically, is far ahead with homeopath treatment and research. After the 6th of December we will finalise our plans, and be off to the states for as long as it takes to fix her genes.
What ever funding we don’t have in place by then, we will make a loan to cover the rest of the costs.
Estians latest gene report shows a replica of Chiane’s gene report, the only difference is, his genes is in a much worse and extreme state than Chiane. We feel we are running against a clock here and it is worrying us. They both are on the same nutrition organic diet, and homeopath course, and we will push very hard for Estian to get some treatment in the states as well. I won’t expect a no for an answer.
In general, Chiane is doing very well. There has been 2 incidences the last few months where Chiane would be 100% fine, and all of a sudden without warning, out of the blue she would loose complete muscle and body movement in the right side of her body. Her right leg, right arm, right eye lid will be completely paralysed and she would have no feeling what so ever for up to 12 hours before her muscle and body movement comes back. Chiane is still on lots of medication as well, and although she looks well, there is still some major issues to be resolved because she is heavily relying on medication to keep the above from happening. Cut all medications out and Chiane will be hospitalised within hours.
We will send another update after the 6th if December once we have Chiane’s results back.
Thank you for your constant support, fund raising and prayers.