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.
We have neither good news, nor bad news. Bottom line, there is something there but they don’t know what it is. MRI scans have changed so much in the last few years, with so many variations of density that they can take pictures of. On most of the different density levels, everything is all clean except one 1 specific density level. The original site where the tumor was, it is all clean. However, on the same side of of the original tumor site, but deeper in the brain there is a fuzzy cloudiness. They don’t know what it is, that’s the bottom line. We have done some research prior to our meeting and found radiation necrosis sometimes occur in a very few cases after radiotherapy. What is radiation necrosis? It is when the radiation cause the tumor tissue to become toxic. Dead or necrotic tissue can become toxic to surrounding normal tissue, and swelling may occur.
This most commonly occur between 6-12 months after radiotherapy but only in a few cases. On an MRI scan, radiation necrosis can look similar to a recurrent tumor. A positron emission tomography (PET) scan may be done to differentiate between active tumor or radiation necrosis. Sometimes, these tests are not definitive.
We will start Chiane on Hyperbaric oxygen therapy again. Just as wounds need air to heal, damage tissue within the brain need a high stream of oxygen to regenerate itself. Vitamin E is also fantastic to promote blood vessel formation in the brain. If all else fails, drugs can be used, but that’s our last option at this point. We have been working extremely hard to build Chiane up and we will try and avoid any pharma drugs as much as possible. The next scan will be end November. If it is cancer, it will definitely show then. If it was radiation necrosis, the cloudiness should be less. We will therefore treat it as radiation necrosis until proven otherwise. We found a few cases where children were treated as if the tumor was back; only to realise months later it was scarring fatigue, or radiation necrosis.
The next scan in November will be the definite verdict. Our plan of action now will be:
1. Hyperbaric oxygen therapy and Vitamin E to reduce radiation necrosis, and to prevent swelling or toxicity in her brain. If it is not radiation necrosis but cancer, it will show during the next MRI scan.
2. Focus on the protein level and markers of the MLH1 gene.
Good afternoon to you all.
Chiane is doing very well in general. She had a MRI scan this afternoon.
We have a meeting scheduled for next week Friday (31/08/12) with GOSH to discuss the MRI results. It is going to be a very long week waiting…till next week Friday. Waiting for this MRI results will be different than waiting for previous MRI results. SPNET usually resurface between 6-12 months after treatment. Today was the 6 month scan. We will be on the edge of our seats for the next week waiting…
We have also been informed that Chiane’s gene results came back. We scheduled a meeting for next week and Tuesday (28/08/12) at UCL Hospital to discuss the Gene results and to discuss what the next step will be.
Chiane is currently being evaluated to decide when she will be ready to go back to school. It won’t be in the next 6 months though.
Her feet has not improved, in fact it got worse. She can barely walk flat on her feet. This was caused by the vincristine chemotherapy. One of its side effects, is that it shortens the achilles tendons at the back of her leg connecting the calf muscles to the heel bone. Vincristine shorten this tendon pulling the feet downwards so that you can only walk on your toes. This doesn’t seem significant but it is. It causes her to be off balance, she can barely run and exercise. Chiane will therefore get casts on both her legs for a minimum period of 8 weeks. Pending on the progress they make pushing her feet back/flat, it might take longer. She is schedule for the end of September to receive casts on both her legs.
We requested that Chiane’s PEG (Percutaneous endoscopic gastrostomy) be removed because it is starting to hurt her. We are not feeding her through the tube anymore. All her homeopath medicines are taking orally. We haven’t used the PEG tube for 2 months and it is time for it to come out. Pending her MRI results on Friday, she will go in for an operation on Friday (31/08/12) in the afternoon to remove her PEG. If the cancer is back, then the PEG will not be removed.
We will do another update on Tuesday after we discussed Chiane’s genes.
Thank you for your continues support and prayers.
Good evening to you all.
We had our meeting today to discuss Chiane’s MRI results.
We have fantastic news. It’s all clear. There is currently no cancer. So far so good. We had a few long meetings today at Great Ormond street. We kindly ask family and friends to be patient with us. We will update the website in a few days. We just need time to process every thing that was discussed…because a lot was said and discussed.
Thank you for the continues support, prayers and help with the fundraising.
Good evening to you all.
Chiane had her MRI today.
We will need to wait 1 week for the MRI results. We have another meeting at GOSH next week and Monday to discuss the MRI.
We had a meeting today regarding her genes and to be honest, we are no wiser after the meeting, than before the meeting. We have been told that they disagree with the gene report that we have provided and further testing is required on the hMLH1 gene which can take anything from 8 weeks to 10 weeks. If they find any loss of expression in the hMLH1 gene, they need to carry out further tests on the PMS2 gene, which will take a year.
Chiane’s cancer can be back by then, or worse, dead. The NHS is either really under staffed or she has now become 100% research and not priority. We were shocked sitting in the meeting expecting to discuss different options of treatment, only to be told, that they require to test 1 more gene, which will take at least 2 months, and maybe a second gene, pending results of the first gene, which will take a year.
Frustration is an under statement here.
We agreed for them to do further tests as chiane is not required to be there. They have her genes and can continue to do the research. We are not going to wait for the NHS. It’s an aggressive cancer that can resurface in 6 months… There is no time to waste. We will get next week’s MRI results out of the way and then decide which way forward.
Andia and I have already decided to get another 3rd party to re-test her genes….again. This time from an approved laboratories in the states. If the gene report is the same from the company we use in the states, as per out first report… Some hard questions will be asked by us to the health system in the UK. To wait possibly a year is insane…
Good day to you all.
Before I start, our next important date is Monday, 28th of May. Chiane will get an MRI scan and we have meeting to discuss Genes, gene therapy and gene manipulation.
We have not done an update for a few weeks, because we are extremely busy at the moment. It is a very slow, time consuming process, that can’t be rushed. We are focusing on a few things at the moment:
2. Blood counts
3. Physical strength and energy
4. Mental state
5. Home schooling
1. Chiane is doing fantastic. Her weight is far under those of her peers and school friends as expected. It will be for months to come, as it is a very slow process. However, Chiane got her appetite back, which is important. From experience, we know, after each chemo she develop a taste for some food and lost interest in previous food she use to love. This is because the chemo constantly changed her taste buts. Once we got home after the last chemo, it took us a week to get her off the feeding machines and on to solid food. Once she was on solid food we relaxed completely the first 2 weeks, as we wanted her gut to get use to solid. What she wanted to eat, we gave it, healthy or not. After the first 2 weeks, it was chaos in the kitchen, making literally over a 100 different dishes for her to try out. Things that taste normal to us, might have a “metal taste” for her, or no taste at all. We therefore had to establish what food she could taste, how it tasted, what she liked and what she didn’t. Remember, we make everything from scratch, even our tomato sauce and mayonnaise. We use only organic and healthy products and after making about 156 different small dishes for her to taste, we established what she could taste and what it tasted like for her (mental taste or not). Once we had these dishes on a list, we could start cooking for her on a daily basis. She loves ice-cream, even this, we make from scratch using organic mangos and other fruits that we put through the juicers, and freeze. She is slowly gaining weight, but as her activity levels increases, she is burning more energy so it’s a constant battle for her to gain weight. The good news is, she is eating constantly, and all the time. Not large portions at a time, but it is constant.
2. Her blood counts are fantastic at the moment. Since she left hospital, she was not once at local hospital for blood transfusions. This means, her blood has recovered unsupported since she left hospital.
Normal blood levels of a healthy child:
Red cells: 11-13 (g/dl)
White cells: 5-10 (x trillion)
Neutrophils: 1.5 – 6 (trillion)
Platelets: 150-400 (trillion)
Chiane’s bloods today:
Red cells: 11.6 (g/dl)
White cells: 6.4 (trillion)
Neutrophils: 4.6 (trillion)
Platelets: 106 (trillion)
Although her platelets are still a bit low, it is going up without transfusions meaning her body has now repaired all damaged cells and the body platelet count is going up. This is fantastic news, taking in to account after the first high dose Thiotepa, she was still receiving transfusions 3 weeks after her chemo. this time, she had no transfusions what so ever.
3. A week after we got home, we took Chiane and Esrian to clown town. Clown town is a place where children can run and play, lots of climbing frames, slides etc. The last 2 high dose Thiotepa’s hit her and she was on a machine for 11 weeks in total (6 weeks first round and 5 weeks the second round). We knew she would be weak, but we wanted a bench mark to work from (a base line). After 30 min, Chiane was flat and tired. She use to run 2 hours non stop, playing and going crazy. She was so excited to go but after 30 min she just couldn’t anymore. She was disappointed to say the least. We wanted her to understand what energy means and how it works, there is no better way to explain this than for her to experience it herself. That’s the best lesson. She had lots of questions as to why she can’t “do what other kids do” and “why she can’t do what she use to do”. We explained to her that she didn’t eat for 12 weeks, was on feeding machines the whole time to keep her alive but it is not proper food. We explained the true value of food, and what it does .. Why it is important to your body. We used lots of different examples and she understood it. that was it… When we got home she wanted to start eating. She started to exercise to get her muscles going again as she was so weak after coming out of hospital. We do NOT PUSH Chiane at all, we let her guide us, and to be honest, she is working so hard. She is working out on her, every day, to build her muscles up again. She started doing yoga to stretch her muscles. Yoga is very safe. She wanted yoga weights to push herself a bit harder (very light weights) and she practice every day.
She started jumping on the trampoline again and she loves “rock climbing” strengthening her legs and arms.
We visited clown town again and she was running and playing for an hour. She was so happy and now she understand the value of good healthy food, the energy food provides the body, why the body needs it and the function of muscles in the body. I know children understand this, but unless a child have been starved for months from food, and stripped from their muscles and Strength, and then experience ‘just how weak they have become”, they don’t completely get it at their age unless they have experience it. Chiane is now working hard to get back to where she was when she fell ill last year.
She is exercising every day, a little at a time. This is a slow process to build her up again but it is going very well. She does exercises when she wants, we gave her the tools, but we don’t push it at all. She is in charge when it comes to exercising.
4. Chiane knows full well the road ahead will be a long, tough road, involving lots of hard work, medicines, homeopath medicines, complimentary treatment, gene therapy, supported treatment like hormones, working harder at school work than her peers, and she is motivated to fight. She said to us last night, and I quote “I’m not scared of dying, if it is my time, it is my time, but, I am a fighter and I want to beat my cancer”.
Chiane understands what death is. We saw a few children passed away during her course of treatment, and it is heart breaking to say the least. She knows it’s a tough battle because she has been following Ellie’s battle:
Ellie has been clear now for 4 years and latest scans have shown a small enhancement and change to the shape of what is there but they got the all clear. It is not a short “get over with” process. It is a battle taking years. Chiane is mentally in a good state.
5. We are working very very hard at home home schooling Chiane, using books written by Oxford university For her age group. It is extremely hard work, but we are getting to a level that we are comfortable with, and a level that she can cope with.
The next 4-8 weeks out focus is the above, while strengthening her, we will sort out the next step in her treatment.