Good evening to you all.
We are back at out local hospital. UCHL is closed over weekends. Mainly, all the children on the wards are there for radiotherapy and receive general anaesthetics. They don’t give radiotherapy on weekends, thus the reason everyone goes home. We arrived last night at our local hospital and Chiane will be back at UCHL on Monday morning.
Regarding Chiane’s case, it’s a slightly different matter. The reason why she was and still is in hospital is because of the seizures. Last weekend, after the seizures they decided to put her on anti-seizure medication. They have “changed” the dosage a few times at GOSH to get it to work as best as possible. She was moved to UCHL to start radiotherapy and she stays in hospital so that they can monitor her until they are satisfied that the medication is “just right”. The fact that she is also receiving radiotherapy makes it more likely for her to get seizures because the brain swells. Since she started anti seizure medication on Sunday last week after the Saturday seizure ordeal, she since had 3 “small episodes”… Not seizures, just signs that she “should be having a seizure” but she is not getting a full blown seizure attack due to the medication. The first one was last Sunday evening when she was on the toilet. Her arms and legs started shaking a bit, but she was fully conscious and said “daddy what’s going on with me, my arms and legs are moving and I can’t stop it from moving”… It lasted about 2 minutes and it was over. A massive improvement on the original seizures, she then just carried on as normal – which meant the medication were working, but needed “twitching” to get it just right. The 2nd episode was on Tuesday at GOSH when her right side of her face started “jumping”, her right arm and leg… It lasted a minute or so and it was then gone… And she was all good afterwards. The 3rd episode was Friday at UCHL when she suddenly looked at us after her morning radiotherapy session, and we could see she looked confused. She didn’t know who she was, where she was, why she was there or who we were. It lasted about 2 minutes and she was back to her old self. Its a bit weird when your own child is 100% fine, talking, walking, alert but doesn’t know who you are! So, the medication is working and has prevented 3 seizures, but the 3 small episodes indicated that they medication is not 100% right yet. They will review her dosages on Tuesday next week. So as a precaution, she stays in hospital just in case she gets a seizure that is worse than a small “episode”… And the radiotherapy is making the changes higher to have one. We are certain by the end of next week the medication that they altered will be right and she will continue having radiotherapy but staying at home.
A second challenge we are facing at the moment is migraines pains. They are back, and very very intense. This is caused by the radiotherapy that makes her brain swell. Friday afternoon, she did her radiotherapy session at 4 pm with a major migraine. For 5 years of age? To deal with a headache and being strapped down for radiation is just remarkable. Other than that, she is good in herself. The headaches should stop by Tuesday as the tissue will be used to radiation by then. If the headaches continues after Tuesday, they will start a short course of steroids to reduce the swelling on the brain. As soon as we are all happy that the seizures and episodes are under control, she will be discharged and we can continue doing therapy but stay home at night time, and travel in every morning, and back home after her 2nd session.
How is she taking all of this? She is very strong mentally and motivated. She still has not complained and she just gets on with it to get the job done.
We also want to thank Helen and her team for the sponsorship walk today. I was told it was a success and they managed to collect a £1,000.00 through using buckets, excluding the sponsors that donated money toward the amount of miles they walked! Hopefully we will get some pictures and an article on the website! Thank you ladies!!!!!!
Thank you for your prayers and we continue to fight for her life!!!!