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…