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.