Category Archives: News from Chris

Update 15/11/12

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.

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Update 03.10.12

Good afternoon to you all
Chiane is doing well under circumstances. We are currently doing hyperbaric oxygen and lots of homeopath medications. Chiane is still on a very strict organic nutrition intake.  We have done blood tests last week to review both Chiane and Estian’s genes again. Hopefully the latest Gene report will have more positive results. We are working hard to alter the protein levels of the MLH1 gene.
Chiane has been in casts for 2 weeks now. Every week she gets new casts to push her feet in to the correct position. She finds it hard to walk with the casts. She looses her balance a lot. On Sunday Chiane fell through a glass door, head first, due to balance problems. Chiane was in hospital for a few hours and glass pieces had to be removed from her head. Some cuts were very deep. Luckily Chiane fell backwards through the glass door and not face first. All cuts are in the back of her head. She was in shock for a few hours but by the time that all the glass pieces were removed from her head, she was laughing again. After we got home, we found out that she tried to climb up her rabbit cage, with her casts on! She slipped and that is how she fell backwards through the door.
Due to the accident, we build in some rubber soles for Chiane to help her keep her balance and help the casts grip on to slippery surfaces. She is forbid to climb trees or her rabbit cage with her casts!
We will continue with the casts for another 5 weeks, getting a new set every week, pushing her feet further back with each new set of casts.
Schooling is going very well. We now have Lesley on board. She has been working with children with difficult learning problems for over 20 years. She gave us a lot of advice, and having her around everyday has made a huge difference to Chiane’s schooling. We had to change the way we school Chiane completely and it is working very well with promising results.
As things stand at the moment, we will probably be off to the states in November or December, to continue further treatment in the states. The main focus would be the manupilation of genes.
Chiane is gaining weight, and she is looking much healthier than a month ago.
Thank you for your continues support
Chris

MRI Results

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.

Chris

Chiane’s progress

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.

Chris

Gene results

Good afternoon
We had a meeting on Tuesday to discuss Chiane’s genes because the Gene results came in.
The MLH1 gene provides instructions for making a protein that plays an essential role in DNA repair. This protein fixes mistakes that are made when DNA is copied (DNA replication) in preparation for cell division. The MLH1 protein joins with another protein, the PMS2 protein, to form an active protein complex. This protein complex coordinates the activities of other proteins that repair mistakes made during DNA replication. The repairs are made by removing a section of DNA that contains mistakes and replacing the section with a corrected DNA sequence. The MLH1 gene is a member of a set of genes known as the mismatch repair (MMR) genes. When the MLH1 gene is mutant, these mutations prevent the production of MLH1 protein or lead to an altered version of this protein that does not function properly. When the MLH1 protein is absent or ineffective, the number of mistakes that are left unrepaired during cell division increases substantially. If the cells continue to divide, errors accumulate in DNA; the cells become unable to function properly, and as these unrepaired cells multiply and divide it turns in to a form of a tumor, which turns in to cancer.
When the MLH1 gene is out of sequence, as described above, it is called Lynch syndrome.
After months and months of refusing to give up, it has become clear that Chiane does not have Li Fraumeni syndrome. as previously though, but Lynch Syndrome. It’s been rubber stamped. The MLH1 gene has been tested in her blood and in the tumor, with staggering results. All fingers are pointing towards this one gene based on all the results recieved.
This is a huge concern to us. Gene sequence can not be fixed. What can be changed though, is the markers and the proteins of genes. After tomorrows meeting with GOSH (to discuss her MRI results), our focus will turn towards the MLH1 gene and treating the protein levels/ markers of this gene. If we don’t alter it, her cancer will come back. So far, only the symptome has been dealt with. The cause of her cancer is still not fixed; unless we fix the gene – Chiane will be at high risk of relapsing. We will let you all know tomorrow, the MRI results.
Chris

Update 11/07/2012

Good evening to you all.

Apologies for the late update. Everything that we are focused on at this point and time, is time consuming and it’s not “over night quick fixes”.

We are focused on the following:
1. education and support, 2. Chiane’s weight, 3. further treatments, 4. Physiotherapy and 5. Alternative treatments.

Chiane is doing very very well at the moment. We had so many meetings and appointments the last 4 weeks, of which one was with an endocrine specialists. Chiane will now be on hormones for the rest of her life as and when she needs it. Radiotherapy caused a lot of her glands to shut down completely. We went to a park the other day, we were all sweaty but Chiane. She run for 2 hours and were dry as a bone. All future hormone support will be establish through constant routine checks (for years to come).

We also discussed schooling with medical and educational institutions. Chiane will now need special needs help with school. In their eyes, the operations and brain cancer are seen as a permanent brain injury and “should be treated as such”. For now, we are home schooling Chiane and are getting very little outside support. As and when the authorities feel she is ready to go back to school. She will return to a school fit for her requirements and needs, but that is still far down the line. We don’t know yet when that will be, but it is a slow process that will take a long time. Until then, we are home schooling Chiane every day. It was also suggested that we should submit Chiane in to a class year, 1 year younger than her as her “growth rate” will be slower than her friends, and mentally, it will be better for her. As you all can imagine, this is a very intense process. We are swamped with paperwork, forms and meetings.

Currently, there is no visible cancer. We did the high dose thiotepa to push the cancer back as it was too aggressive for us to do anything. Now, there’s no visible cancer, which is good, but now, none of the cancer centres want to take Chiane in to fix her genes, because “there’s no visible cancer”… So good news, but at the same time the worst news! Not even alternative centres want to touch her, because the FDA has a finger in most of them and they’ll get shut down if they “treat someone for cancer who has no visible cancer”… Most centres “treats” cancer and do not “prevent” cancer. Until Chiane relapse, there’s not much that Great Ormond street or us can do…there is 3 very very good Genetic centres. 1) Pittsburg, 2) Vancouver and 3) MD Anderson centre in Houston. None willing to take Chiane until she relapse and the cancer comes back. We are trying our best to get her in to one of the above to give her the treatment she needs but we have had no luck yet. It’s frustrating to say the least, and yet again, mountains of forms and paperwork, hours on the phone and when you get no where it gets us just more motivated.

We are focused on getting Chiane’s weight up. This is not something that happens over night. As she gets more active, she burns more energy. We are slowly making progress gaining 0.5kg on a weekly basis.

Chiane is currently doing yoga to build her muscles, and she sees a physiotherapist every week. Her muscles are still tight and it’s a constant battle for us to get and keep her muscles loose. It was mention that she might need casts soon. Chiane can’t walk flat in her feet and tippy-toe 90% of the time. In itself, this is not a problem but when she start running it is a huge problem. Balance is obviously also becoming a problem if she is all the time on her tippy-toes.

We are still using all her homeopath medicines, are very very focused on the correct diet, nutrition and organic food are still at the top of her nutrition list. Chiane is continuing hyperbaric oxygen therapy.

As you can see, we are running at 110% miles an hour to get Chiane back to a “as normal life as possible”. However, her days are packed with alternative treatments and supportive treatments. Our main focus above anything else, is to get her the correct gene treatment which currently, as a huge challenge because no FDA approved institution is interested to take Chiane.

We will do another update in 2-3 weeks, hopefully with good news regarding gene treatment.

Thank you for the continues support and prayers, fund raising and help at home.

Chris

Today’s MRI scan results

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.

Update 28.05.12

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…

Update 24.05.12

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:
1. Weight
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.

Here is a link to 2 of many cook books we use (both are free online for those that want to print them out)
http://www.kict.info/RecipeBook.pdf
http://www.kict.info/Food-&-Cancer.pdf

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:
http://www.caringbridge.org/visit/ellie1/journal

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.

Chris

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Update 07/05/2012

Good evening to you all,How is Chiane? Her gut has healed and she is eating like a racing horse on steroids. She gained 0.5kg in 2 days. We are repairing her body and we are getting her ready to fly abroad. Within 10 weeks we should be ready to fly.

We have made the decision not to proceed with the Burzynski clinic. We felt as parents that there are better institutions to deal with the Le-Framine syndrome we are currently faced with.
What now? We are currently looking into 3 different institutions worldwide also doing gene therapy and we are establishing which one is the best for both Estian and Chiane.
The funds collected so far will still only be used for the gene targeted therapy, but instead of only one child, we have 2 children now that require treatment. We only have one shot to get this right. We are confident what we need to do, but we are just ironing out a few details before we move forward.
Thank you for your support and please help and continue with the fund raising. We will need every penny to do this.
Chris