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.