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.

First Day!

It was Catherine's first day at school today. She was very nervous in the morning and in the days running up to school day, but I knew she would be fine. She went up to her new teacher, and as we were leaving, all we could hear was Catherine chatting away to her teacher. Sometimes I think Catherine is such a grown-up. She just went inside and started discussing what she was worried about with her teacher. I think Reception teachers deserve a medal when all the new children arrive. They all wanted her attention, plus the teacher had to deal with all the parents as well.

It turns out that Catherine's main worry was whether the other children would end up knocking against her portacath, but tomorrow, her teacher is going to explain about Catherine's portacath to the other children.

Catherine is now so excited about her new school. She told me she loved using the computers today, doing her drawing and storytime. So much so that I was told this evening to get everything ready for her tonight for tomorrow!

Sick and poorly

Catherine has been vomiting most of the night and has a tummy ache. It is not caused by her chemotherapy. She is feeling very miserable. The doctors are concerned that she might get dehydrated and need to go in for rehydration. However, at the moment she is still drinking. Her temperature has gone up a bit, so we are praying she doesn't need to go into hospital today. Please pray with us.

Catherine has been poorly on and off all week. Mainly she has been nauseous and has had headaches but today she was actually sick, so I'm now hoping she will soon start to feel better, especially as she starts school on Monday. Thankfully she still has one neutrophil (!) so she has a very small immune system. She also has no temperature so we can look after her at home. She is currently fast asleep on the sofa. These are some recent photos of her, one from at church and the other when she 'met' Dorothy from the Wizard of Oz. We had a very good day at the hospital on Tuesday. The consultant has told Catherine that they will continue to take her bloods from her portacath, so she is now not terrified to go to the hospital for her treatment. I think the nurses were amazed at how calm she was about having her portacath accessed. She even refused to have any cold spray to numb the area. I think she was just so happy not to have to use the 'finger clicker'.