Saturday, 26 September 2009

Hair raising day

Today is the first day for ages that Catherine is acting her old self. She has been out and about with us today and has been inventing craft activities and games at home. The only problem she has mentioned is that her head feels prickly when she lies down due to the roots of her hair on her pillow.

She is now wearing her new hair when she is out and about which is woven in lovely little mini-plaits under a bandana. Everywhere she goes she is complemented on her pretty hair. The only problem is that I get some really evil glances from other mums, as if to say 'When does that woman get the time to do her child's hair like that!'. Little do they know.

Catherine made her usual impact in the cafe today, as she removed her hair just as I was ordering lunch. The ladies behind the counter suddenly looked shocked, so I turned round, only to see my hairless daughter waving her wig. They tried to look like they hadn't noticed and reacted, but it was too late! Poor women. I hope Catherine doesn't make a habit of this. I don't think people's nerves will stand it.

She is still taking all her medicines but is now also back on her chemotherapy.

Thursday, 24 September 2009

Last night at 3am I waved goodbye to my very hot daughter - who was then 38.6 degrees - and a very tired husband. Only one of us could sleep at the hospital so I had to stay at home. It was hard waving goodbye to them, and Catherine was upset because she said she would miss me and 'bump'.

Just before I was due to travel to the hospital, I had a text from Mark telling me Catherine's temperature had miraculously returned to 36.8 degrees and we might be able to come home today. Sure enough, the Consultant agreed at lunchtime that she could come home with oral antibiotics. It is highly unusual for us that her fever has just resolved itself, and normally if Catherine spikes a temperature, we are in hospital for at least three days! As long as her temperature remains stable and no cultures grow at the hospital, Catherine will be able to get better at home. It was such a relief, and it was lovely to welcome Mark and Catherine home at 3pm today.

THANK YOU for praying!!!!

Wednesday, 23 September 2009

What else????!!!!!????

Catherine has just come in this evening with a temperature over 37 degrees, feeling as warm as a cuddly hot water bottle. She also has a runny nose. If her temperature gets to 38 degrees, we have to go to hospital for intravenous antibiotics. At our previous home, it used to be 38.5 degrees, but it is a different protocol here.

Oh boy. What else is going to go wrong this week? Mark has already made the 180 minute round trip to the hospital to get her a prescription for a different oral antibiotic this evening.

So far in the last few weeks Catherine has had, Mucositis, a urine infection, abdominal cramps, vomiting, Methotrexate rash, has lost all her hair again and now has the beginnings of a temperature. She has really gone through the wars this past few weeks.

Please pray that this infection/virus is mild and easily treatable. Please pray that despite me not feeling well, I manage to sort everything out with Cath over the next few days. Please pray that if she goes in, we still manage to balance a busy workload this weekend and that everything goes well.

And please also pray for Naomi Gammie, Catherine's little friend who is in hospital tonight being treated for pneumonia. Naomi is only a baby, and she needs our prayers.

I know we're probably going in because Mark has just started to pack the hospital bag, and he's only just taken Catherine's temperature again...

Tuesday, 22 September 2009

Mohican

Catherine ran into our bedroom this morning shouting 'mummy, I've left all my hair in the bed'. We opened our eyes to see that, sure enough, all that was left of Catherine's hair was a mohican style. Basically, as she tossed and turned in her sleep, it has rubbed off all the hair around the sides and back of her head. She was shocked, but when I opened my eyes, all I could see was how amazingly big and beautiful and blue her eyes were. So the first response she had from her mummy was 'wow, you look beautiful'. This totally calmed her and she started to giggle whilst pulling out remaining bits of hair. However, when she saw the long mohican bit in the mirror, she wanted that bit to go away. So this morning we shaved off the remaining hair and her scalp feels better now and less tender.

She looks so beautiful without her hair. Now that her face has matured, being hairless looks even better on her than it did when she was three-years-old. The only problem, of course, is the reaction she gets from others, particularly other children. If she doesn't wear a wig, she gets lots of stares from children and puzzled comments (see http://catherineisgreat.blogspot.com/2009/02/shes-got-no-hair.html). This is why I wanted her to have her own hair for school. But today we are phoning the Princess Trust to try and arrange new hair for her, as we didn't use them last time because we had hair supplied. She is also seeing the Consultant to see if he has any more NHS hair available for her.

I think the Consultant might be a bit shocked to see her today. Last week she was with hair and this week it has all, unexpectedly, disappeared again. Also she now has a 'Methotrexate rash' - a little red rash on her cheeks. So she looks very different from 7 days ago, bless her.

At the moment, it looks like the Vincristine probably caused the hairloss, but we are not sure whether this has happened as a cumulative effect of taking the drug, or whether the dose increased. Mark will find out today, as unfortunately I can't get to the hospital. Catherine will also have her bloods taken to check that her neutrophils have bounced back.

Please pray that her hairlessness is well accepted by the children at her school. This is a real worry for me as she has had her confidence knocked enough through this treatment.

Being an 'oncomom', 'Catherine Confidence' and 'SCB's'















(Catherine and her mum before the latest hairloss.)


I've taken the inspiration for this from Suzanne's post at: http://krokkenoster.wordpress.com/2009/09/15/week-34-day-2/ as it got me thinking (thankyou, Suzanne).

Suzanne writes about how odd it can be being an 'oncomom' - a mum dealing with the oncology treatment of a child. It is quite hard to go through something like this without becoming a bit defined by a child's illness. It is a bit like being a first time mum, when suddenly you become 'Milly's mum' or 'Jake's mum' and all the attention goes from you to your child. Being an 'oncomom' is a bit like doing that again but with the added look of distress or discomfort in people's eyes when they first find out, rather than the one of 'isn't he or she perfect/cute/squashed' that you get with a newborn.

It is also odd how sometimes you end up discussing various chemotherapy drugs and neutrophil counts with complete strangers as if they had any idea what you were talking about. Occasionally, of course, you meet an expert, disguised as a regular individual, who understands the intricacy of different chemo regimes. THEN you get to have a huge discussion about chemo and their experiences either treating cancers or living with them.


I have come to feel, when people ask how Catherine is, that I could reel off any number of deep medical discussions about different forms of treatment. This weekend, for example, I even diagnosed Catherine's infection before the doctors! How can this be? I'm not medically trained, nor did I have any aspirations to be in the medical profession. What's more, I used to have a phobia of hospitals - now they feel like a second home. I walk into a hospital and immediately go into a state of apathy, based on days of being 'inside' and having to turn my brain off because there is nothing else to do. I know where the coffee machine is, I know how 'society' works in hospital. I know what sort of conversation is acceptable with the other parents and what to avoid.


But the most important thing about being an 'oncomom' for me is about remembering that I'm in this for the long-haul (turn away now if you don't like emotional bits).

Mark and I had various aims at the beginning of treatment. Firstly, that we would preserve our daughter's 'Catherine Confidence'; that the assertive, confident little girl that entered treatment in August 2008 would not lose the natural confidence and strength she has displayed, so articulately, since birth. Secondly, that Catherine would not turn into an 'SCB'. An 'SCB', as defined by the medical profession at the beginning of treatment, is a 'Spoilt Cancer Brat'. We had been warned early on that children could become extremely spoilt during treatment as parents overcompensated for their child's illness. Spoiling, they said, results in a child who is more unmanageable and demanding after treatment has ended; one who is never satisfied unless they get exactly what they want, when they want. It is not easy, when you see your child suffering, to not cave in to their demands for anything. It is not easy, when your child is feeling ill, to keep disciplining them - especially when it is hard to tell if they are being a toddler pest or are really hurting. But if Catherine is going to turn into the adult she has the potential to become, we have to keep on with these goals. I don't know if we're getting this right all the time, but it is worth a try.


We might not have had any say in how her treatment was put together. We certainly didn't have any control over the original diagnosis (supposedly 1 in 6 million children are diagnosed with childhood cancers). But we can do all we can to support and strengthen our girl, hopefully without turning her into a pretentious little miss! So if my opinion is worth anything to other oncoparents out there, whilst we might not be able to change the facts ourselves, we can work on our little individuals, focussing on their characters and personality to make the outcome, after treatment, the best we can. Let's take back a bit of control where we can!


In these early years of her life, please pray with us that we can be good enough parents to get our girl through all this in the way that will be best for her in the future. Thank you.



Monday, 21 September 2009

Unexpected hair loss

Catherine is losing her hair again!?!? On Saturday I was cuddling her and when she raised her head from my shoulder, I was covered in her little curls. Mark and I were both shocked (again) as this wasn't supposed to happen during her maintenance treatment. I was dreading telling Catherine but she soon realised, as her curls fell and tickled her face. She was a bit shocked to start with but is bearing up well, although she has started wearing her long wig again to school. Her hair is starting to come away in clumps this evening, so it looks like she will be hairless again by the end of the week.

I spoke to the doctor on Saturday - we had to go and get her some oral antibiotics for a mild infection. The doctor said that maybe Catherine's body was just very susceptable to the slight change in her chemotherapy dose which might account for her Mucositis and hair loss. It is highly unlikely to lose hair in maintenance but it is still possible. We are still slightly confused but will see the Consultant tomorrow.

All these things do not mean that the chemo isn't working - the chemo is working almost too effectively in Catherine's body, and we are grateful for this.

But I am so sad that she is losing her hair again. Only a week ago we were planning her first hair cut!

Thursday, 17 September 2009

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!

Wednesday, 16 September 2009

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.

Tuesday, 15 September 2009

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.

Monday, 14 September 2009

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.

Sunday, 13 September 2009

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.

Thursday, 10 September 2009

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.

Tuesday, 8 September 2009

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.

Monday, 7 September 2009

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!

Saturday, 5 September 2009

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.

Friday, 4 September 2009






















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'.