Steroids

Catherine is now back on steroids. She is not very happy. Her neutrophils are also quite low, so she is a bit up and down with that as well.

Oh well, Catherine had two (reasonably) cheerful days...

Please pray for Wouter today. Wouter is receiving treatment for Rhabdomysarcoma but currently has pneumonia. Thankyou. http://krokkenoster.wordpress.com/

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.

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!!!!

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...

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.

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!