Phew

This morning Catherine's ulcers looked much smaller - by lunchtime, the ulcers on her lip had almost vanished! She is now starting to speak again and she has a bit more energy. Once her ulcers have healed we are then just waiting for her immune system to come back. Then she will then be able to go to school again, which she is actually looking forward to! Thankyou so much for your prayers. I was amazed to watch her ulcers this morning disappearing before my eyes!

Hard going

This is hard. I am tired. I wish Catherine was feeling better. She still isn't speaking and she is just really miserable. Her tummy pain seems to have gone but she is still only eating her cheese spread sandwhiches. This is very demanding.

Catherine is a little bit better today, but still has some way to go. Her ulcers look a bit better and she was able to speak a bit more today, although she prefers to point or signal at things rather than speak. It is really difficult seeing her in such discomfort but she is being brave. She gets most frustrated at not being able to do her usual things because she just doesn't feel like it or her mouth hurts. She is always pleased to use her mouthwash because it seems to really soothe her mouth.

She is currently living on cheese sticks, yoghurt, bananas and cheese spread sandwiches (made with soft bread and without crusts). It is her decision not to eat anything else. She had a small piece of chocolate today and it really inflamed her ulcers so it put her off trying anything else apart from her 'safe' foods. She is still able to eat and drink though which is good for someone with mucositis.

We went for our twenty week scan today and we had to take Catherine with us as she can't go to school (although we kept her away from other people as she is still without an immune system). We also had her bottle of hospital-strength hand gel with her! Once we had the photographs, Catherine decided she wanted to get one framed and put in her bedroom. So this evening, we have been framing a picture of 'bump' and it is now a surprise for her for the morning. I asked Catherine what we should call bump. I'm not sure why, but she decided we should call baby 'David'. Then she thought again and said, 'let's call baby Jesus, mummy'. Then she changed her mind and thought that actually perhaps David was best!.

Thankyou for your prayers.

Mucositis and no neutrophils

Catherine has mucositis, the painful inflammation and ulceration of the mouth and digestive tract.

It is no wonder she has had a painful tummy. Yesterday, she stopped speaking because of the pain in her mouth, and only today did we spot ulcers which had formed on her bottom lip. She is also only eating soft foods. The Consultant said she also has an ulcer in her mouth and on her tongue. This condition is a side effect of one of her chemotherapy drugs - Methotrexate. He said it could be very painful.

Mucositis at this stage in her treatment was a bit of a shock to us as it is usually something experienced during the intensive blocks of chemotherapy. We hadn't even considered it as an option before we saw the Consultant today. Also, because we have had no real side effects from her treatment until now, it added to the feeling of shock. However, we are relieved to know what is going on.

Chemotherapy kills off all the fast growing cells, and this includes those in the mouth and stomach. She also has no neutrophils (absolutely no immune system), which is why the mucositis has become so bad.

We have been told to continue her antacids as this will help relieve her tummy while the ulcers heal. She now has a special mouthwash, lots of painkillers, and a gel to help her mouth heal.

So now Catherine is on:
Anti-sickness medicine
Gaviscon
Omeprazole for stomach acid
Preventative medicine against chest infections
Painkillers
Medicated gel mouthwash
Gel

They have stopped her chemotherapy until she recovers. Normally she takes these drugs:
Methotrexate (weekly)
Mercaptapurine (daily)
Vincristine (monthly)and Dexamethasone (steroid for five days a month)
Methotrexate into her spinal fluid (every three months)

She is going to be off school for quite a while as she is just too poorly to go in. She was upset when I told her as she was excited about going to the canteen for school dinners 'all on her own without mummy and daddy'.

Thank God that we have a Consultant who is both very compassionate towards Catherine and also very skilled. Whilst he said that it is a sad problem for her, he also said that he is pleased she is neutropenic, because if she never became neutropenic in her treatment, they would not be pushing the treatment hard enough to ensure she remains free from Leukaemia.

Please pray that she heals quickly and that her neutrophils bounce back as soon as possible. Please also pray that she doesn't get any more side effects or infections.

No further on...

I have to say I am worn out with trying to work out what is wrong with our daughter. Catherine is still not right and I am lost for ideas. Her neutrophils still need to recover but I'm now starting to wonder whether she is also anaemic. She keeps complaining and then lying down for a bit but not really sleeping. Then she complains of a tummy ache or ear ache. She also has a sore tongue and her lips look a bit red. We are at the hospital again tomorrow morning, so hopefully her Consultant will be able to shed some light on what is going on.

Gaviscon, side effects and neutrophils

We had to go to the hospital today as Catherine was ill all last night, and it seems that Catherine's nausea and vomiting is most likely caused by her stomach having become inflamed from her chemotherapy.

She has become taller recently, and whilst this is a good sign, it meant that her chemo had to be increased to account for her being a larger person! Since then, she has had bouts of nausea and last night she was up most of the night vomiting. It was made more weird by the fact that she only felt really sick at night and in the morning.

So it seems we have a side effect of chemotherapy, made worse by the fact she has felt nervous about school. I had suspected some type of reflux and she is now just like her mummy in taking Gaviscon (Peptac) with Omeprazole. There seems a cruel irony here.

Her neutrophils have also taken a big hit and she is neutropenic (without immune system), which explains why she has been taking naps at odd times of the day. We are waiting to confirm that there is no infection.

Obviously all this has made it much harder for her to adjust to school, and now Catherine feels her nausea will be solved, she told me she is looking forward to getting back to school. She has stopped her chemo for a week to allow her neutrophils time to recover, so we are hoping she will be well enough for school on Monday.

Please continue to pray she doesn't get any side effects or infections from her treatment and that her little tummy soon recovers from all the chemotherapy.

Very stressed small person

Well, yesterday's good start didn't last for long, as Catherine woke up again extremely nervous about going to school. She began feeling nauseous again, and kept telling us she was nervous. She went to school and had a nap for most of the morning. Her teacher phoned me to ask whether this was usual for Catherine, so I told her that it was unusual and explained how nervous she had been that morning. When I picked her up, she was looking quite worried and told me she felt sick and had wanted to come home, but as soon as we left the school building she perked up and told me she felt fine. It was almost an instant state change, so I think it is all nerves related. She hasn't yet plucked up the courage to speak to any of the other children, so I am concerned for her. Everything is so different for her - house, hospital, school and people - plus all the treatment she has had in the last year has been hard and scary. I'm just a bit concerned that emotionally, for the time being at least, she has had enough.

Please pray that she feels calmer about school and that she finds it in herself to deal with her nervousness. She has dealt with so much concerning her hospital treatment, such scary things, but I just think the whole newness of school - without her mum and dad being there as her security - is very difficult for her to deal with.