We were at sick kids today (Royal Hospital for Sick Kids) Edinburgh in the planned investigations unit to check Anna’s hormone levels. Since finishing her leukaemia treatment almost 2 years ago, Anna has been catching up on her growth. However it seems she might be growing a bit too fast and so today she is having some hormone tests and an xray. Her gripper is in to take bloods and give her some medication. She’s up on the ward and should be finished and back to school in time for lunch. She is thrilled that the play specialist is with her in the playroom.
And especially delighted to get a certificate, medal and gift from the fairy box to take home.
After all that she made her promise at brownie’s tonight. She is a busy girl!
Anna is still in hospital. She’s now had a further two weeks of intensive anti-viral treatments, with the accompanying hyperhydration and anti-sickness drugs. Yet she still has shingles, with a new spot appearing even yesterday. IV acyclovir is generally the most effective treatments for shingles But for some reason it doesn’t seem to be working effectively for Anna. We are currently waiting on the results of blood tests to check how she is responding to the aciclovir.
She has her sixth fracture of the year – in her left ankle. Her bones are now so incredibly weak that the slightest trauma can break them. It’s the result both of being non-weight-bearing and also the steroid treatment. We are trying to use the hoist for any kind of moving and handling. It’s the safest way to do it.
Anna’s recurring infections (potentially life-threatening) and increasing incidence of fractures mean her consultant and medical team have finally come to decision that she will have no further steroid treatment. She would have been due a further five steroid doses before the end of the leukaemia treatment. I’ve found it a really difficult decision and I’m getting emotional again even when I write this. I just want to feel we’ve done absolutely everything to beat the leukaemia. There’s no point in having strong bones and no infections if she doesn’t survive the treatment. I trust the team and know that this is not been an easy decision and there has been a lot of thought and discussion. It’s still hard though…
Nathan is struggling. He’s missing me and he’s missing Anna. I’m so lucky to have good friends who will take him in the morning and after school (thank you Aileen, Louise and Courtnay…) but all he really wants is to be home in his usual routine. I’m making a point of trying to drive back from the hospital to pick him up from school and then bring him back to the hospital so at least he can see me and Anna. And granny, grandma and Clare are all helping out to allow me to do this.
Princess Anna, as she now wants to be known, is on really good form, despite all the difficulties. She is very clear about what she wants, makes people curtesy when they come into the room and and scores them and me for how
well we’ve hoisted her.
I really hope we see improvement tomorrow. It feels like this is never going to end but I know that it willl.
Since being discharged on Monday, Anna has continued to feel really sick.
Although her temp is fine she is clearly not right. Her fracture is still sore, as is her tummy. Her skin is itching and she constantly says she can’t get comfy. She feels nauseous from the moment she gets up right through to going to bed. We’ve tried going to nursery and tried staying at home. She feels sick wherever she is. And going out any distance in the car almost guarantees vomiting. The general feeling is that there is impacted poo in her bowels which is building up higher and higher.
She is taking anti sickness medication ondansetron and metaclopromide, laxatives lactulose and movicol alongside her usual daily cocktail of drugs, but often struggles to keep them down. I’ve been in regular contact through the week with ward 2, keeping them updated, and they’ve been happy for us to manage it at home as she was still taking enough fluids and food. However on Friday, she was sick every time she had anything to eat or drink so we headed back into sick kids.
She’s now on IV fluids, and additional, stronger laxatives and anti sickness are to be given. We are about to go down for an ultrasound. The doctors know that Anna has a high pain threshold (she lived with an undiagnosed fractured femur for 2 weeks) and also can become seriously ill very quickly. So they are being ‘extremely cautious’.
Anna is keeping herself as still as she possibly can, presumably to limit her nausea. Like many children, she instinctively knows what to do when she feels ill.
I don’t think she has smiled all week.
Anna is still in sick kids and feeling thoroughly miserable. After being admitted through A&E on fri night, she was put on ward 4 (not the oncology ward) as the hospital was so busy. Peter stayed that night and then I took over yesterday. She was moved to ward 2, where we always feel much more comfortable as they know Anna so well (although we are spending so much time on other wards other staff are getting to know Anna!).
Her temp has been below 38 degrees for 24 hours. The pain from her fractured femur is being effectively managed by morphine and she seems more comfortable but she is still being sick. She is having intravenous fluids through her portacath, and continuing to have her daily chemotherapy dose of mercaptopurine, as well as voriconazole for the previous fungal infection. Her stomach is very bloated and has been for a while now. It could be constipation from the variety of drugs so she is having laxatives. She has started vitamin d supplement and will also now have omeprozole to counter any stomach acid problems.
All Anna can think about is her next meal. She has been asking what will be for tea since 10am.
Nathan had a lovely afternoon at Neil and Courtnay’s fundraising talent show (thanks everyone for a superb effort!!!) and was then picked up by Peter when he returned from the hospital. Nathan knows the routine when Anna is in hospital. He enjoys getting to choose a sandwich and drink from M&S and eat it in the Anna’s cubicle during handovers.
Weekends in the hospital are much easier to manage than weekdays, when Nathan has to be got to and from school as well as someone being in the hospital with Anna during the day. Hopefully this won’t be a long stay…