Bloods this week:
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.