anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

School holiday week

In many ways last week was a quiet week.

Nathan was on school holidays last week. Anna had no unplanned visits to Sick Kids, just the scheduled  intra muscle (peg) injection on Monday. Sore but quickly over.

Trip out to the parkWe are trying to take Anna out a little bit more so we went to the park one day (what good timing to see Isla too!) and also visited my parents for an overnight stay. We do feel quite restricted in terms of going out – we have to get the balance between giving the children as normal a life as possible but always being cautious about infection. It just isn’t worth the risk.

Visitors to the house in the last week included representatives from Barnardos, social work, Council for Independent Living, outreach nurse  and OT. It is all to support and help us but we are still in the process of discussion to make sure the help we are getting is what we want.

Medicines have been light this week, probably one of her lightest weeks since treatment began. Antibiotics Mon & Tue, stomach protector and fluoride daily, and chemotherapy every day. Although she is not on steroids this week, the effects are definitely still there. She  still has nightly hunger, irrational behaviour and general mood swings. My sister Clare said it sounded like a child at the end of their tether and that is exactly it…but for hours at a time and the knowledge that it will happen all over again the next day.

Luckily, she didn’t show Grandma and Grandad any of this behaviour on our mid-week overnight stay. She was at her best most gorgeous self! She is still very weak but certainly keen and willing to do more. At the moment, she is able to stand (with full support) for as much as 20 seconds when transferring from sofa, chair or bed to us. It may not sound much but this is an improvement.

Peter and I have been choked with the cold this week. No matter how much we try to avoid infection, it sometimes can’t be helped. Our main aim is then not to give it to Anna and Nathan. Presumably it isn’t flu as we have all had our jabs now. I think we are just exhausted and not able to fight off infections ourselves.

Although we didn’t get out as much as we had hoped, it was lovely just to spend time all four of us together, and reassuring for Nathan, who is continuing to deal with all of this in the most fantastic way. Even when Anna is at her grumpiest, he is patient and kind (teacher material…?).

Re our cancelled trip to Disneyland, Paris, Easyjet refunded all of our flights. Thomas Cook felt unable to go out with their refund policy, although individual staff really tried to help out as much as they could. However, we do have enough vouchers to maybe go and stay in a nice hotel for a night (or longer if we think we can manage that…).

Today, Anna and I headed off to Sick Kids at 7.15 am for her to have a general anaesthetic and chemotherapy injected into spine and brain fluid. The steroids effect hasn’t worn off from last week (and we start it all over again tomorrow) so not only was she irrationally hungry, she had to fast from midnight. So she was ABSOLUTELY STARVING… and she didn’t hold back in telling everyone about it.  She screamed almost non stop from our arrival at 8.15 until she was taken into theatre at 10.30am. It was hard going! Poor, poor Anna. That really is too much to ask of a little girl. We had to go to the day care unit as Ward 2 was full. So no-one knew Anna and her particular ways and they didn’t really see her at her best. However, the good news is that there are no more theatre procedures (planned) for another 6 weeks.

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A busy week

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Bloods this week:

Haemoglobin 85

White 5.9

Neutrophils 4.55

Platelets 257

It’s been a busy week. We had our planned weekly physiotherapist appointment on Monday (didn’t happen for various reasons) and also met Stephanie, from Barnardo’s, who is going to spend some time with Anna and/or Nathan each week. On Tuesday we went to Newcastle for our rescheduled 6 monthly visit, mainly to discuss Anna’s treatment (more on this later). On Wednesday, it was our now fortnightly trip to Sick Kids clinic for Anna’s updated treatment plan, plus weight (slight increase so we have stopped the overnight feed for the moment), bloods (see above – generally ok) and discussion with doctors, dietician and pharmacist. Thursday we had an unplanned visit to Sick Kids as Anna hurt her leg and we needed to check it out (sore but recovering – using codeine for pain relief). And on Friday Anna stayed at home all day!

We are all very tired – Anna has been sleeping through several nights in a row now that we have stopped giving her an overnight feed but her routine is relentless. For this next block (weeks 9 – 17), she is on steroids for 2 of the weeks (2 times a day), chemotherapy (once a day), antibiotics (one 4 times daily to hopefully prevent further shingles during her steroid treatment and one twice daily on a mon and tue only as part of her regular routine). Plus 2 tablets daily – fluoride and one to protect her stomach from all the other drugs. We have a variety of other medications for use as needed eg codeine, peptac, lactolose…. and there are various procedures which will be done at sick kids (including another general anaesthetic). Syringes have to be cleaned and sterilised (and then reused – no waste in the NHS) and each medicine carefully measured out. She struggles to drink enough fluids so persuading her to take a small cup of milk can take half an hour. And aspects of personal care can take a long time depending on how she is feeling.

As we found during her first block of treatment, steroids can cause excessive and irrational hunger as well as mood swings. Within 4 hours of her first dose, the effects started. She is currently a very, very, very demanding little girl. It is hard to help her as she often doesn’t know what she wants and will change her mind as soon as you give it to her. We have explained to Nathan that she is behaving like this because of her medicines but it is hard for him.

Peter has drawn up an excellent spreadsheet detailing her drugs programme. All liquid medicines are given by us through her NG tube so we have to test that it is in the right place each time (at least 4 times a day), put in her medicines and then flush it with water. Anna likes to get involved in giving her medicines by getting her NG tube out of her pouch or helping push the syringe. We take her temperature 3 times a day, constantly on the alert for any rise which could send us straight back to hospital. My bag is packed by the door at all times.

We have also had 2 major challenges this week.

Firstly, there is ongoing discussion about whether it is safe for Anna to have Vinchristine, a chemotherapy drug. This is because one of the possible side effects is weakening of muscles. As Anna’s muscles are already so weak, the effects could be severe, even paralysis. On the other hand, vinchristine is a proven effective treatment for ALL. So does it compromise her treatment if we substitute another drug or do we us it and risk severe side effects? Our Newcastle (SMA) specialists have been speaking with colleagues across the UK but there don’t seem to have been any previous cases of SMA and leukaemia so there is no precedent. Our sick kids team are in regular contact with them and also constantly reviewing her treatment. We are all agreed that Anna’s leukaemia treatment is the priority and if substitutes can be given that are as effective we should use them instead. There isn’t a definite answer to all of this but we do know that vinchristine was substituted by Daunorubicin in her first block and she responded well, and is currently viewed as low risk. There are generally 3 protocols for leukaemia treatments, protocol A, protocol B and protocol C. There is apparently now protocol Anna. I think this is a going to be a constant issue through her 2 years of treatment.

Secondly, we had asked our local authority for an occupational therapy assessment in light of Anna’s SMA diagnosis, before her leukaemia diagnosis, to consider how to give her independence in the house. We were told that we should convert our downstairs dining room into her bedroom and therefore limit her to downstairs, as well as remove our main family eating area. We don’t feel this is the best solution at all. Obviously, her needs have increased since then so we have requested a further assessment. The assessment is again that we should convert our dining room into a bedroom, despite the fact that now we also need to be close to her in the night as she may be sick (and possibly choke as she is unable to turn herself), need attention, medicines, moving into a more comfortable position etc. Our dining room is the furthest room away from our bedroom (it was suggested that one of us consider sleeping in the dining room with her). The bathroom, with enough space to clean and change her, often necessary during the night, is upstairs.

We want Anna to be able to participate in society in every way possible. She is bright and alert and fully able to engage and be an active and effective contributor in all aspects of her life. We are trying to teach her that there are no limits to what she can do and that society should be accessible for her. She has the right to expect the same opportunities as Nathan, and indeed any other child. We cannot, and will not, be the first people to limit her by telling her that she can never again go upstairs, with her brother and parents, in her family home. Our life feels stretched and chaotic at the moment in terms of dealing with her medical needs to ensure that she has a successful outcome to her treatment but we also have to find the energy to make sure we are doing our best for Anna and Nathan in all these other areas. So the conversation continues…

On a positive note, there is a lot of support and help coming from the local authority in lots of other ways, in terms of specialist services and also giving us the opportunity to identify and direct our own services. We also get fantastic support from a whole range of places such as CLIC Sargent and Kindred.

We continue to be hugely grateful to all those helping and supporting us in so many different ways, whether that is continuing to pray, helping with Nathan, or any number of other things. Thank you.

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New Regime

Anna seems to be improving in her communication and interaction and is on the way back to her former self, which is very heartening. There are needless to say good days and bad days!

She remains of course very, very weak and is currently unable to stand for any length of time, let alone take any steps. Additionally, she is very weak in her arms. All this stems from her SMA exacerbated by the drug regime she is on for the ALL.

The focus will therefore be to ensure that she takes load bearing weight on her muscles and stretches and reaches with her arms to maintain and build strength and movement through more intensive physiotherapy: she will have weekly alternate visits from West Lothian physiotherapist, Dawne and occupational therapist, Clare for the next few weeks, as well as Ann Marie and I giving her daily physio.

Last Friday, Anna had an appointment at A&A Studios, Edinburgh to investigate which wig would be suitable for her. Although she is holding onto her hair well, it is definately thinning and will at some point go entirely due to the chemotherapy. As it turns out the choice of wigs for a three and a half year old is very limited indeed but we identified the best one, which will be ordered as soon as they receive the prescription from RHSC.

Anna is currently on daily overnight feeds through her NG tube, as it has proved difficult to ensure that she takes enough liquid and food daily to maintain and increase her weight. She has in fact lost some weight since returning home. However, she is not taking well to these overnight feeds – she is throwing up 2 or 3 times a night – which defeats the purpose. Although she is only on 300ml per night at 30ml per hour (it should be up to 500ml by now), we will reduce this in an attempt to erradicate the sickness, plus discuss the situation with the dieticians at RHSC.

Today we had a brief visit to RHSC to get a new dressing on Anna’s NG tube as it had once again become detached from her cheek. On Tuesday coming, we have an appointment with Prof Bushby at the Newcastle Institute for Genetic Medicine. Subsequent to that visit and an exchange of information between Newcastle and RHSC, RHSC will decide on the details of the new regime which Anna will follow for the next block of her ALL treatment (daily chemotherapy given at home will continue but she will not have weekly intrathecal chemotherapy). This new regime will start on Wednesday when we have an appointment at RHSC.

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