Ann Marie, Nathan and I brought Anna home this afternoon!!
Many thanks to all the staff at the hospital for taking care of Anna for us thus far, and to everyone for their prayers, good wishes and presents for Anna.
We arrived back around 6pm with her medicines and 2 appointments for next week at RHSC Edinburgh.
To paraphrase “… this is not the end, nor indeed the beginning of the end, but it is perhaps the end of the beginning…”
Happy New Year to you all!
It is clearly time for us to go home. For the past few days, everyone who has come into our cubicle has asked if anyone has discussed going home. They (consultants, doctors, nurses, …) obviously have! Today, we have had discussions with the nurses, occupational therapist, physiotherapist, pharmacist, outreach worker, social worker and doctor about discharge procedures/continuity programmes. We only missed out seeing the play therapist because our room was so busy all day.
We are excited but slightly nervous about it as there is so much to learn before we go – Anna’s treatment continues at home with us doing more of it ourselves. We, and all the staff, are now in full agreement that we will (and should) go home once Anna is medically ready and when we are trained and competent to do all the things we need to in terms of looking after her, continuing her treatment and closely monitoring her condition.
One of the key things is (STOP READING NOW IF YOU ARE A BIT SQUEAMISH!!!) learning how to give Anna fluids and medicines through her nasogastric (tube in her nose down to her stomach) tune. This involves a process of checking the tube is in her stomach (checking stomach contents), flushing the line with water and then putting medicines in it. We also have to give her water through her NG tube (she is not drinking enough) by holding up a syringe full of water and letting gravity do its job. Anna isn’t particularly thrilled about this, as you can see!
We also need to monitor closely temperature, exposure to infection, paleness (low red count), bruises/rashes (low platelets), general unwellness, etc etc. Anna will also be an outpatient for the next block of treatment having a weekly lumbar puncture to insert chemotherapy medicine into her spinal and brain fluid.
Oh my goodness – this sounds like it is going to be a full-time job!!! However, we are just THRILLED at the thought of having her back home. One day at a time…
Christmas 2011 is definitely one which we will remember for a very, very long time. It was not as planned and a planned trip early in 2012 will now not happen also. However, this year we made the best of it in order to give Anna and Nathan as “normal” a time as possible.
Ann Marie and Nathan stayed in the Clic Sargent house across from Edinburgh RHSC on Christmas Eve and came across to Ward 2 to open presents on Christmas morning, etc.
Nathan and I then went to my sisters home for Christmas “lunch” at 4pm and stayed over at my mothers’ house, whilst Ann Marie had the pleasure of Christmas Day afternoon and evening in hospital with Anna.
I then returned to RHSC on Boxing Day whilst Ann Marie and Nathan travelled to Dundee to stay over at Ann Marie’s parents.
I have to say that RHSC pull out all the stops to make Christmas as special as possible for the children who have to remain in hospital over the Christmas period.
There was a Christmas party on 21 December with a face painter, magician and a special appearance by Santa Claus (see above), and on Christmas Eve Santa and his helpers went round the wards visiting each child and leaving gifts (including a few for Nathan) which was very nice!
Anna woke up just after Santa had visited her (see above) but although he was still on the Ward she did not want a photograph taken with him but did see him and give him a little wave bye-bye!!
Blood counts have become very important. Anna’s red blood, white blood and platelets are measured daily and give a good indication (to the doctors mainly) of how well she is doing.
This is my understanding of blood counts and Anna’s condition, based on biology O-level (a long time ago), lots of question & answer sessions with the doctors and as much googling as I can on an iPhone in a hospital ward with an intermittent 3G connection.
Red blood cells carry oxygen around the body. A normal level is between 120 – 140. Below 80 is low and is the trigger level for a blood transfusion.
Anna’s red blood count was 29 on the day she was admitted. She was clearly a very unwell girl.
There are 2 main types of white blood cells. Of these, neutrophils are a white cell type that fight infection. A normal neutrophil level is somewhere between 2 and 6. Neutrophil levels below 1 mean that you are neutropenic (a word we now hear a lot), that is, extremely susceptible to infection. Anna’s neutrophil level on admission was 0.96, is currently 0.33 but has been as low as 0.05. Infection is a huge danger to Anna when she doesn’t have the white cells to fight it effectively. So when she is neutropenic it is very important she is not exposed to any kind of infection.
Platelets make the blood clot. Normal levels are 150 – 400. Below 20 is low. Anna’s platelets were 23 when admitted and 23 yesterday. The level has gone up to 153 over the 3 weeks we’ve been here and then back down again. She has had several platelet transfusions.
Because the chemotherapy kills all cells, not just the leukaemia cells, it is normal for the levels of cells to be varied. However, the neutrophils are what we watch.
I need to apologise to everyone now because I might become quite obsessed with Anna’s neutrophil level over the next 2 years. I’m sorry if I say I can’t travel/see you/meet for coffee/let children play/do anything etc etc etc because Anna is neutropenic. Just please be patient with me and understand my very real concern that it could be dangerous and life threatening for Anna.
The Macmillan website is a fantastic resource for all kinds of information. You can see the website in the useful links page. Or click here to go straight to the section on acute lymphoblastic leukaemia (ALL) in children.
Santa had no problem finding Anna and Nathan, as you can see! Thank you to everyone for your good wishes and presents. We’ve had a lovely day – probably the best Christmas possible in a hospital ward. It will make us appreciate christmas at home all the more next year!
We wish all of you a very happy Christmas.
Like everyone else, we are getting ready for Christmas. We will be at Edinburgh Sick Kids Hospital. Not the christmas we had planned but we are still going to have a great time! Christmas has already started on ward 2…Anna loved the magician at the Christmas party, as well as getting her face painted.
She also loves her butterflies (thanks Auntie heather…)
And getting about in a wheelchair – as soon as we gave her this she pushed herself along the ward. For Anna, it is probably the first time she has been in control of moving around for about a year. We have known for some time, because of the SMA, she would be a wheelchir user at some point soon but have been keen to encourage walking. However, the leukaemia has weakened all her muscles even more so the wheelchair is, for the moment, a necessity.
It is now 2 weeks since Anna was diagnosed with ALL.
In that time I have personally gone from being extremely shocked and being a bit of an emotional wreck, to being more upbeat about the eventual outcome of Anna’s illness.
Obviously part of the reason for being more upbeat is the medical expertise of all the staff at the Royal Hospital for Sick Children in Edinburgh that she is benefiting from, and the high survival rates from ALL nowadays.
However, Anna’s ability to deal with her illness is quite unbelievable for a 3 year old, and is greatly uplifting: she is without doubt a very special young lady.
Of course, she is only 3 years old and therefore deals with things as a 3 year old does: she doesn’t like the drugs, doesn’t like the portocath being attached to drips, doesn’t like the tube down her nose/throat (she gags a lot) …, but I can’t help but be uplifted by her smile, her laugh, her assertiveness, her stubborness, her fighting spirit …
As a family we have adjusted from being a close knit family to seeing very little of each other as a group. In the situation that we find ourselves in, you just deal with the day to day reality and get on with it.
Anna as indicated is dealing a well as could be expected with her illness. Her brother, Nathan is also dealing admirably with the situation. It can’t be easy for a 5 year old boy to deal with not seeing his sister on a daily basis (they are very close), to seeing only one parent at a time, to the general disruption … He knows that Anna has Leukaemia and is very ill, but he obviously can’t grasp the full extent.
Once again I must add my thanks to the many messages of support, gifts for Anna and offers of help: they are all greatly appreciated!
It’s been a busy weekend. Both Grandma and Granny have been able to visit Anna over the weekend, giving me and Peter the opportunity to go out for lunch together and even do some christmas shopping – both things we thought reasonably straightforward up until 2 weeks ago. We realised we have not been together out of the hospital since Anna was admitted. Time together is limited to a quick half hour handover where we try to update each other with all activities in/out of the hospital.
Anna has been tired, grumpy (fair enough) and hungry. Blood counts (red) are in the low 80s. Normal would be up around 150 (I think) and below 80 they would immediately do a blood transfusion. A transfusion can sometimes cause a temperature increase which in turn can lead to the need for antibiotics – so not something to do unless necessary. Yesterday, the consultant (on over the weekend) decided not to do one and wait and see if she improved. However, seeing her today and how weak she was (unable to even really stand up) he immediately got bloods ordered. She is much improved this afternoon! Her blood pressure has been high so she is now on medicine for that as well. I thought these things must mean she was not doing well, but in fact it is just an illustration of how any issues are addressed very quickly to keep our little girl as well as possible. They keep telling us that she is responding well to treatment .
2 weeks in hospital. another 3 to go? Today, I met another mum who arrived on the ward on friday night to an unexpected diagnsosis of leukaemia – just like us 2 weeks ago. How quickly our lives have changed and yet how quickly we have adapted to our new reality. We have to – there is no choice.
Following on from the last post when Anna wasn’t eating enough, we now have the opposite problem! The steroids give her an insatiable appetite so this morning I was woken at 6.30 by a hungry Anna. She had rice crispies, toast and pasta with butter and parmesan – all before breakfast time! Yesterday was similar, with constant demands for food throughout the day. This is all in addition to the nutritional feed she has through her tube in the night. Peter said his day yesterday was up and down – up and down to the kitchen all day for food for Anna! I’m looking forward to her next weigh in – there will surely be an improvement.
Her weekly bone marrow check up showed good results – leukaemia cells are right down and good cells (red, white and platelets) up.
Steroids can also change children’s temperament – in Anna’s case it has exaggerated her assertive nature. Those of you who know Anna well will understand that she needed no help on the assertiveness front. She is absolutely clear about her demands and has no trouble expressing herself. Although this is fairly demanding for Peter and myself (we are alternating nights staying with Anna) it is really encouraging. It makes us think she must be feeling better and stronger…
Many, many thanks for all the presents arriving for Anna – she absolutely loves getting these lovely letters and parcels. Hospital days can be long, even with the routine of obs, medicines and doctor visits, so it is fantastic to have nice things to do.
Anna chose today’s photo herself – she still wasn’t very pleased about the one I put up yesterday. So I took lots today to give her a good choice.
Medicines and eating are 2 things that Anna has been struggling with over the past week. She has to take a lot of drugs – steroids, drugs to address side effects of steroids, chemotherapy, drugs to counteract the side effects of chemotherapy, drugs to mop up toxins released as the leukaemia cells are destroyed and antibiotics (up until last night). She takes them orally, through her portocath or injected directly in to her brain/spine fluid (last one under general anaesthetic). That is a lot of drugs for one little girl. As she says, ‘they don’t really taste very nice’, and she’s right. Medicine time is a struggle for her and me or Peter and usually results in tears and tantrums on someone’s part. It is very hard to make her take something that tastes horrible but we know how necessary it is for her treatment. The current routine is that pink piggy (her favourite toy) has it first and then Anna has it followed swiftly by a large gulp of milk. But that process for each spoonful can take around 10/15 mins. Ideas on how to make it easier please…
As well as this, she is not eating. Her weight has dropped considerably over the last month and we are being told to offer her a high calorie diet. I’ve never before been encouraged to spread the butter thickly, mix double cream into milk for drinking (in fact mix double cream into anything we can), pour olive oil over everything and give her lots of cakes. It does feel wrong (but sounds delicious!!!) in terms of everything we are told about healthy eating. However, it turns out it doesn’t really matter what we offer her at the moment anyway because she is not keen to eat anything much at all.
The steroids are supposed to make her ravenous but there is usually no sign of this yet. However, this morning, when she wasn’t allowed to eat anything after 4am because she was going to theatre and needed a general anaesthetic she still wanted food (pasta with butter) from the minute she woke up. It was a long morning as we couldn’t give her anything until 11.30am!
The current solution to both of the above is to give her a feeding tube through her nose so she will get nutrients fed in during her sleep and use it for medicines during the day. Let’s hope it works…
She wasn’t too keen on me taking a picture with her tube in her nose which is why she isn’t smiling. Again, I don’t blame her. She is doing incredibly well!