We have more than our fair share of planned medical appointments – oncology, respiratory, endinocrology, spinal, neurology, physiotherapy, occupational therapy and orthotics as well as all the other school and social care meetings. These range from monthly to annual and everything in between and so there is rarely a week that goes by without some kind of appointment. There are also frequent unplanned events around Anna’s care needs. There is not much I can do about this. I just have to plan our lives as best as I can and make sure that I’m always available.
Anna has had three appointments in the last two weeks, all worth a mention.
The first was her 6 month check up with the respiratory team at Edinburgh Sick Kids. Anna’s muscles are weak due to SMA. Not just the muscles that would allow her to walk or make more of use her arms but internal muscles as well. When she gets a cough she doesn’t have the strength to clear her lungs so phlegm or mucus build up. That leads to two main problems. Firstly, the build up of phlegm/mucus creates an ideal breeding ground for bacteria, leading to infection such as pneumonia and then hospitalisation. Or secondly she manages to cough it up just far enough to fall back into her stomach, leading to severe nausea, dehydration and again, hospitalisation. Although she finally has a cough assist machine which helps clear her lungs, I’m still paranoid about letting her get near anyone with a cold or cough. It’s not a big issue for most people but for Anna it can be serious. Maintaining good respiratory health is essential for Anna and anyone with SMA.
Anna’s second appointment was her annual bone density scan. A combination of being non weight bearing and receiving steroid treatment for leukaemia meant that her bone strength had deteriorated to the point that her bones were were beginning to break when she simply bent an arm. Because of that, her leukaemia treatment was stopped early as the consequences of such serious bone fragility were too severe. She had bone strengthening treatment for over a year and her bone strength now sits just within the normal range for a child of her age. We go to the Medical Physics department at the western general hospital in Edinburgh for an annual scan (she lies under the machine in the picture) to monitor ongoing strength. Obviously it’s important that her bones are as strong as possible for lots of reasons.
Anna’s third appointment was for surgery. We’ve been waiting almost a year to get her portocath (click for more information) removed, due to illness on either her or the surgeon’s part or higher priority patients bumping her off the lists. The first procedure she had done after she was diagnosed with Acute lymphoblastic leukaemia (ALL) was the insertion of the portocath. I remember clearly the trauma of trying to get a cannula in Anna’s hand in those immediate hours following diagnosis. She was so dangerously ill at that point, and her red blood cells down to next to nothing, and they couldn’t find a point to get it in. We were all traumatised. Having a portocath made it easier to give her the hundreds of procedures needed such as blood or platelet transfusions, steroids, chemotherapy, antibiotics, fluids, anaesthetics, etc. Anna’s general anaesthetic/surgery was scheduled for Tuesday afternoon so she had to fast from 7.30am. She had an early breakfast at 7am of porridge and then nothing until after surgery around 6pm. It all went well and we were able to get some painful dental work done at the same time while she was anaesthetised.
My beautiful, gorgeous girl is now 8 yrs old. 5 years ago today she was diagnosed with Childhood acute lymphoblastic leukemia. After 2 years of intensive treatment she remains in remission.
Our lives had already been changed forever with the diagnosis of Spinal Muscular atrophy only a few months before the leukaemia diagnosis, but now we are through the intense and traumatic period of critical illness we focus on allowing Anna to be the best she can both now and in the future. She is just like many other 8 yr old girls. She loves arts and crafts, singing dancing and (still) loves anything pink and sparkly. She has a full and busy life with school, after school activities, play dates and holidays. She expects to be able to do everything and that’s what we try and make happen. However we face challenges on a daily basis in terms of the level of care and support needed as well as ensuring accessibility in its broadest sense as we go about our lives. Anna still doesn’t sleep through the night, needing help to turn over or move her covers, which means I live in a state of constant exhaustion. She remains under the care of 6 consultants across 3 hospitals and 2 countries. She needs help with every single aspect of her life both day and night.
I’ve struggled to blog in the last year or two (mostly because I’m just so tired all the time) but I know there are lots of you who want to know how Anna is doing. We still have a story to tell – not so much now about leukaemia but more about how we deal with disability and ensure accessibility in every aspect of Anna’s life. I’m going to do my very best to continue the blog to tell you that story.
It’s probably clear to even those who don’t know Anna personally that she is a strong willed, assertive and (at times) confident young girl. She places no restrictions on herself and expects the same from others. I am very lucky to have her. x
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!
24 hours on IV antibiotics, fluids and anti-emetics has an amazing effect. Anna is back to her usual lively self. We’ve been discharged with agreement that we go back as day patient to monitor low potassium levels as well as oral medicines for the next week. Back to school on Monday…
Happy new Year from me, Nathan and Anna.
2014 had some real highs… Anna finished active treatment for leukaemia and is now in remission (although under regular review) and we had the most amazing time in Disney world.
However, some difficult times too. Our family life is very different. It’s just the three of us living in the house now and it’s unclear whether or not we will be able to stay in our current home.
Best wishes to everyone for 2015 – I’m sure it’s is going to be a better year for us.
3 years ago today Anna was diagnosed with acute lymphocytic leukemia. She has spent 2 1/2 years undergoing aggressive life saving treatment and suffered numerous infections and medical traumas.
However, since finishing treatment in March, she is in remission and looks increasingly healthy and and well. She goes to school every day and loves being with her friends. She can read, write and do sums. Last night, she danced at the school disco, this morning she met Santa at the school Christmas Fair. She is practising her lines for the nativity play and loves her weekly after school music class. She is just a 6 yr old girl doing all the usual things you would expect.
We continue to face daily challenges in terms of her spinal muscular atrophy but today, we celebrate the fact that 3 years on, she is still here.
We have been to 3 parks in three days. The weather has ranged from sunshine to thunderstorms with temperatures consistently around 30° C.
We have been to Animal Kingdom (Nathan’s favourite), Epcot (mine and Heather’s favourite) and Magic Kingdom (Anna’s favourite).
We’ve been on the Kilimanjaro Safari, watched the Festival of the Lion King and ridden the legend of the forbidden mountain. Heather and I have eaten in Marrakech, drunk margaritas in Mexico and tasted Sauvignon blanc in New Zealand at the Epcot food and wine round the world Festival. Heather and Nathan have been to space and back. Anna and Nathan have been transformed into a princess and a knight at the bibbitty bobbity boutique.
But best of all, we have met almost every single Disney princess – some of them several times. Pocahontas, Tiana, Jasmine, Mulan, Snow White, Cinderella, Belle, Aurora, Ariel, Rapunzel, Ana and Elsa.
Anna’s give kids the world badge and our special fast pass meant we didn’t need to queue. We were escorted to the front of every single queue. Absolutely amazing!
Anna and Nathan are both very very happy. Heather and I are both very very tired.
It was a long journey on Saturday – check-in was at 7 AM and we finally arrived at Give Kids The World (GKTW) village around 5 PM local time (10 PM Scotland time). Travelling with a child with additional needs means everyone knows who you are and is ready to help and support you at every stage. From the minute we arrived at Glasgow airport right through to final destination, we were well looked after. We were paged at the same time as the flight was called and everyone greeted us by name from then onwards – at the gate, baggage handlers and cabin staff. The Virgin Atlantic crew were absolutely amazing, checking we were all ok throughout the flight, bringing special treats for Anna and Nathan, helping as much as they could with getting Anna to/from the incredibly small airplane toilets, organising a captain’s announcement to the whole plane about Anna’s wish trip and bringing us some of the perks of first class (even though we weren’t sitting there) such as a gorgeous miniature tiered tower of cakes. We met not just the captain but the entire crew!
Anna’s snapdragon wheelchair survived it’s first plane flight with lots of comments from fellow passengers, airport staff and small children (especially boys) about how they’d never seen anything like it before and how cool it was!
The GKTW village is amazing – it’s really hard to describe how welcoming everyone is to Anna (known as ‘the wish child’) and us, her family. However we have already had to address some misconceptions from some of the local volunteers – namely German is not the native language in Scotland, my 21yr old sister Heather is not 28 years old (she was horrified) nor the mother of Anna and Nathan, I am not their grandmother and Mary Poppins is an English nanny character not a disney princess. Other than that, all is well.
The gift fairy comes ever day when we are out and leaves presents for the children. Anna and Nathan both have chosen their pillow of dreams and Anna’s wish star now rests with over 100,000 others on the ceiling in the castle of miracles. Taxis are organised to take us to and from the parks each day and there are activities and events in the mornings and evenings such as character visits, a pool party, Halloween event (tonight) and Christmas celebrations (they try and cover all seasons/annual events as some children may not have the opportunity otherwise). We spent Sunday here just taking it easy after a very long day travelling – both Anna and Nathan are loving swimming- and we are off to the parks tomorrow.
Anna has been off treatment for six months now and the difference in her is unbelievable. It just shows how ill she must have felt whilst on all the different medications. She is stronger, louder, happier and really just back to being Anna.
So what have we been up to during this time? Just normal day-to-day things which have missing from our lives for so long. We’ve enjoyed the summer holidays, spending time at Crieff Hydro for mum and dads 50th wedding anniversary,, the wonderful fully accessible crathie cottages in braemar and the beautiful Callum’s Cabin on the isle of Bute . Since term started in August, Anna has been going to school almost every day. She is now also going to after-school activities – music buds and drama classes. She goes swimming once a week with me and spends time at Barnardos each week. We go out at the weekends to shop, eat out, visit historic Scotland places,… just much more like a normal life.
We are still regular visitors to sick kids – Anna has monthly haematology reviews as well her bone strengthening infusion. We work closely with the physiotherapist and occupational therapist to continue to build whatever strength Anna has left. But dealing with all of this with Anna as well and strong as she can be in herself makes such a difference. We can deal with any challenges that come our way.
I’m having trouble uploading photos tonight so I’ll need to add them later. But the other really exciting thing that is happening six months after treatment ending is that we are off to Disney World! We fly out tomorrow morning…
Happy 6th birthday, Anna. My gorgeous, beautiful Princess.