anna's blog

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

Final day of treatment

20140205-200118.jpgToday is officially the last day of Anna’s treatment for leukaemia.

It is two years and two months since her diagnosis. She has had oral chemotherapy for most of those 789 days, regular intravenous and brain/spinal fluid chemotherapy, lumbar punctures, daily/weekly/monthly steroids and numerous blood transfusions.

She’s had a portocath put under her skin, a feeding tube down her nose and one very unpleasant bronchial wash.

She has been on antibiotics, antivirals, antifungals, antiemetics and a cocktail of other drugs to counteract the side effects of all of the above. She has had IV fluids, electrolytes, overnight liquid feeds and saline drips.

Pain relief has ranged from calpol to morphine.

She is a frequent visitor to x-ray, and also had ultrasounds, ECGs, CT scans, MRIs and a bone density scan.

She is known to many of the departments at sick kids – neurology, endinocrology, respiratory, orthopaedic and oncology.

I’ve lost count of how many nights we’ve spent in hospital or how many outpatient appointments she’s had.

She still had some walking ability when she was diagnosed but now she isn’t able to bear any kind of weight at all. Her bones are like tissue paper and break with the slightest trauma. She has had seven fractures (femur, knees, ankles, feet, wrists). We have no idea if she will recover any strength.

She’s also had three bouts of shingles, staff epidermidis (at least twice), kiebseilla, para flu, cellulitis, mouth ulcers, UTIs, aspergillus, rsv, septic/deranged liver, various other bacterial/viral infections and an extremely severe skin reaction. And there have been a couple of times when we thought she might not make it.

Although today is a day of celebration, it’s also something of an anti-climax as her steroids were stopped some months ago due to her getting continued infections. She had her last dose of chemotherapy over a week ago as it was stopped due to her low platelets and currently we are in sick kids as she has several infections. She had a platelet transfusion this morning and needs a red blood cell transfusion tomorrow. She’s also had her monthly 4 hour pomidronate infusion today today – her bone strengthening treatment.

She was due to have her final bone marrow/lumbar puncture done today but wasn’t well enough. It will probably take place next week. She still needs to have one catch up intrathecal/general anaesthetic, likely to take place on fifth of March. We will continue to come to clinic regularly and she will be having pomidronate monthly.

However, we are glad to get to today. She is still my beautiful, gorgeous daughter and now we can start planning for the future – Anna, me and Nathan. X

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Back home

20131207-141405.jpgAnna is back home. The newest spot didn’t develop further, all the other ones have reduced so she’s been allowed home continuing with oral rather than IV antiviral medicines.

Fingers crossed that her shingles don’t come back.

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Shingles, fractures and steroids

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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.

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More shingles and another fracture

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Anna’s shingles looked like they were beginning to clear up by the end of last week so she came off her aciclovir (anti-viral medication) and hyperhydration. Everything seemed okay but then over the weekend new spots appeared. So, on Monday she went back on the aciclovir. The anti-sickness medication continued and she’s back on hyperhydration (aciclovir can be quite toxic to the liver so they hyperhydrate to flush it through). It might be another five day course or longer – it depends on how quickly the rash starts to clear up.

Her gripper site (where the gripper needle plugs into the port-a-cath under her skin to give her medicines and fluids intravenously) has shingles around it and was inflamed, bleeding and oozing fluid. Her gripper was taken out for a short period to see if it could recover. If not, she would have needed a cannula in her hand. Neither reinserting the gripper into a sore and open wound or having a cannula put in were attractive options. However, she needed one of them done as otherwise she wouldn’t be able to have anything intravenously. so she was very brave and had the gripper put back in. I think it was very, very sore

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Anna’s bones are so thin and weak that slight pressure exerted in the wrong place can cause a fracture. She woke up on Friday morning with a sore knee. The doctor examined it and she was sent to x-ray. Although initially there was no sign of a fracture, closer inspection revealed a small undisplaced fracture just above her knee in the growth plate. So although the cast on her arm was taken off on Friday, she was only cast free for about an hour. After a lot of discussion with the nursing team we now have a very detailed care plan in place specifying exactly how she is to be moved for toileting or going into her wheelchair, specifying how many people are involved and when the hoist is to be used.

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The daily weekday routine includes a visit from the hospital and outreach teacher, a session with the physiotherapist, discussion with others such as the dietician/dentist, a visit from various doctors (oncology, orthopaedic, general registrar) as well as regular medication (she is currently on metoclopramide for sickness, Oramorph on request for pain, cholecalciferol – vitamin d, posaconazole – antifungal, aciclovir – anti-viral, potassium – blood levels are low) and observations. She is also still having an overnight feed through her NG tube as her appetite has not picked up.

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Her red blood count is still low so she has had 2 blood transfusions in the last week. Her platelets are extremely low so she has had a platelet transfusion. She is neutropenic (her neutrophil count lower than one so she is unable to effectively fight infection). Her liver function has not been good but has not deteriorated further.

Despite all of the above, she is mostly smiling, laughing and singing. She’s in bed tonight with everything she needs – her new doll Emily (thank you Jim), piggy, sick bowl, NG tube with feed, IV tube with fluids and Disney princess blanket.

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… And a fractured ankle…

Anna’s shingles are not too severe and she is recovering well. However, the treatment for it (IV aciclovir) is causing her extreme nausea and fairly frequent vomiting. She feels absolutely rubbish.

Her right leg has looked a bit odd and I asked the physios and doctors to check it. She had it x-rayed and it is fractured too. Just like her wrist, it has happened at least a couple of weeks ago and is now already healing. It is slightly displaced but fortunately should become straight as she grows and the bone develops. Her muscle looks like it is starting to waste which is a serious concern. Physio are coming back tomorrow to review it.

Her blood results have dropped today and she’s had a blood transfusion this evening. She is still getting massive amounts of IV fluids (electrolytes). We’ve tried to give her usual feed over the last few nights but she is simply not tolerating it at all. These are all her tubes and bags hung up, attached to either her NG tube or port a cath (direct into her bloodstream).

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Although she is appearing quite well in herself (apart from feeling so sick all the time), there are lots of things happening. None of it is enough to cause serious concern at the moment but as usual we’re watching very carefully. Luckily she’s had auntie Clare and granny here at various times today to keep her amused and distracted.

Just now, she is coughing, has just vomited and is waiting for her next dose of aciclovir along with antiemetics. She can’t get comfortable and feels so nauseous that we’ve asked the doctor to look at her. Her stomach is severely distended. I’m hoping that both Anna and I have a good nights sleep but I think it’s extremely unlikely.

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Shingles and a broken wrist

Anna has had a rash on her back for the last couple of days and a sore wrist the last couple of weeks. Other than that, she’s been on really good form and we’ve had a wonderful time at Callum’s Cabin on the isle of bute since Saturday. We’ve been to the beach, although it turns out the sand is too soft (I’m just glad I managed to get Anna and her wheelchair back off the beach before the tide came in!), had fish and chips down at the harbour, played board games in the house and just enjoyed time together in a beautiful environment.

However, a visit to sick kids today suggested that she has shingles. The sore wrist was x-rayed and turns out to be broken. It’s in a cast. She’ll be in for at least a week, probably more. She is such a brave girl.

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