Update 13/09/13 – MRI Results and goals.
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.