We are all really looking forward to Anna getting back to nursery. She really misses her friends and talks about seeing them again. She is still so weak it is hard to imagine her coping with a full morning but it is just a matter of taking time. Springfield PS and Bonnytoun nursery school have been wonderfully supportive in every way possible, from gifts and incredibly thoughtful gestures such as the recorded nativity play and wall chart of Anna’s nursery friends, to the careful planning of her return. We had a lovely visit on Thursday, only for 15 minutes, but even that was tiring for Anna. We will be back next week for a little bit longer! Thank you also for all the support from nursery mums and dads who have had a letter about Anna avoiding chicken pox, measles, shingles, mumps and cold sores. It will help us enormously if we know these infections are around as they can be so dangerous for Anna. It was such a joy to see Anna smiling with pleasure again, and giving her little wave to her friends. This is Anna all dressed up to go to nursery.
Not long after the last blog post on Sunday, and after having dropped Ann Marie and Nathan off at the train station, at home Anna loudly complained of a pain in her right arm which was obviously very distressing to her, and she seemed to have a redness on the back of her arm which dissipated when the pain receded. This prompted a call to RHSC Ward 2 who advised a trip to their A&E.
Therefore, I gathered some clothes, medicines, etc together. Around 15 minutes after the first “episode”, and whilst I was changing her into some suitable clothing, she then had another painful “episode” in her right arm, but I also noticed that her feet were VERY purple and cold.
A 999 call then resulted in an ambulance at the door after explaining to the 999 operator that I had a 3 year old with SMA Type 3, recently diagnosed with ALL and just discharged from a bout of shingles plus the above and that I was obviously concerned!
The ambulance trip (no flashing lights) to RHSC went smoothly (with a warning message, in error, going off for a deployed step every minute it seemed), with no recurrences of Anna’s “episodes”. Anna was seen fairly promptly: she was very calm and had no apparent symptoms of her “episodes” apart from a slightly elevated heart rate. The upshot from the doctor was that she didn’t exactly know what the problem had been but they would like to keep her in overnight for observation in Ward 2.
After having some swabs taken, Anna had a gripper inserted into her Portocath and some bloods taken. Eventually, Anna and I spent an uneventful night in the same Ward 2 cubicle that we had vacated on Tuesday! Doctors Shona and Alice visited us in the morning and said essentially the same thing as the doctor in A&E had said the night before, but that they would like to keep us a little longer to ensure that there were no further problems. As long as it didn’t happen again it wasn’t necessarily something that needed to be explained/understood (see Note below).
Phone calls/texts to an obviously anxious Ann Marie, in Pizza Express at North Bridge Edinburgh, with Nathan and members of her family, kept her up-to-date throughout but there was no need for her to go to RHSC.
When Ann Marie arrived around 1pm Monday as agreed, it was indicated that we could leave and therefore at 2pm we again departed Ward 2. We will be back on Wednesday for Anna’s weekly intrathecal chemotherapy via a lumbar puncture under a general anaesthetic!
As I understand it, a possible cause is residual nerve pain linked with shingles. Adults have reported pain in an area where they have not had shingles but which has been found to be nerve pain from nerves which serve the area where they have had shingles. Such pain can occur some time after the shingles has been treated. Anna’s purple feet could have been the body responding to the trauma by diverting the blood circulation away from the extremities to the trauma area.
Anna’s chemotherapy via a lumbar puncture went well on Wednesday. We had to wait until around 11.15am before it was Anna’s turn on the theatre list. Once Anna came round from the procedure we had to ensure everything was fine before we left, so didn’t get home until late afternoon.
It was the first weekend back home for Anna since early December. I held the fort as Ann Marie travelled to a Pampered Chef Conference in Birmingham early Friday morning and returned home on Sunday afternoon (There were a number of texts Friday morning/afternoon from Ann Marie enquiring if everything was ok!).
Gran picked Nathan up from school on Friday lunchtime for normal weekly Nathan: Gran time, but he also stayed the night at Gran’s as a treat!
Anna’s NG tube came away from the dressing on her cheek late Friday so that necessitated a call to RHSC Edinburgh, Ward 2 to arrange to go in on Saturday morning to have a new dressing applied to replace my “patch up”! Everything went smoothly and a quick checkup of her chest by Dr Wallace also showed everything in order.
The positioning of her NG tube was also quickly checked as she has been sick a couple of times lately when a water bolus has been given through it, and she has been exhibiting general distress when medicines have been passed through the tube. This may be due to a slight irritation of the throat caused by the tube as the positioning was fine.
Later on Saturday, Anna and I visited Gran’s to collect Nathan, and also Auntie Maureen was able to see Anna for the first time since her diagnosis with ALL. We stayed for tea which was very nice!
Sunday – easy day at home. Ann Marie returned home in the afternoon (we all collected her from the airport), and later on today Ann Marie and Nathan will be travelling to Edinburgh to meet and have a meal with some of her family [Grandma, Heather, Clare (plus her sons Zak and Ben), Mary (plus her daugthers Katrina and Lotte)(who are visiting from Cambridge) and Jamie]. I will be staying at home with Anna, as she cannot be in a busy public location at present in case of contagion which would be potentiially life threatening for her.
Anna remains very, very weak but since she came home we have been delighted to see her smiling, laughing and generally interacting a lot more than of late. She finds standing impossible without help so we will have to concentrate on helping to get her leg muscles working again.
Ann Marie and I brought Anna home this afternoon, together with her medicines.
Anna has to go back into RHSC tomorrow at 8.15am for her weekly lumbar puncture chemotherapy under a general anaesthetic, but that’s only for the day: should be back in time for tea. Anna will have to fast from 2am latest and no fluids from 6am.
At the time of writing this blog, Anna is sitting snuggly wrapped up on the couch watching “Shrek Forever After”!
Anna made a trip to the WRVS shop today in her wheelchair to buy a Barbie magazine! The shop is sitiuated just outside the ward at the front entrance to the RHSC Edinburgh. It was lovely to see her propel herself (albeit slowly) for a fair part of the way there and back. She wasn’t up for showing herself smiling much but you can see she was pleased with herself!
Anna then had a playtime with Charlotte the OT, supported in a piece of equipment designed to allow her to stand and her legs to be load supporting – the idea being to build back up the muscles in a childs legs after treatment with e.g. chemotherapy.
Anna has been getting gradually better in terms of her shingles rash, her temperature and the amount of pain she is in. But she still is in pain from her reflux (although that is also much better) and she is anticipating pain from being lifted, etc when none actually exists (understandable given what she’s been through!).
She is so much better that we are anticipating coming home again very soon, although she remains very weak.
The more accurate test results from her lumbar puncture of a couple of weeks ago have come back and we are told that Anna is now officially designated LOW RISK. This means that the eventual outcome of her Leukaemia (ALL) is more likely to be positive!!!
Daily chemotherapy plus other drugs via her NG tube (delivered at home by Ann Marie or myself) and weekly visits to RHSC for chemotherapy via a lumbar puncture will be required for the next block of her treatment.
I’ve had a few technical difficulties over the last few days. I usually write my blog on my iPhone at night in the hospital when Anna is asleep. The new cubicle we are in has no outside windows (we can see into the ward and windows across the other side) but it means there is absolutely no signal even for phone calls, let alone Internet. Also, last night when I had finally managed to get my post written and uploaded photos, I pressed the wrong button and deleted the whole lot. It was late and I was tired (had busy but fantastic day training on time management with Anna Davis (Achieve Balance)). Anyway, I hadn’t the energy to redo the whole lot. So here is version 2!
The ward never sleeps. Lights are dimmed but activity continues through the night. Anna’s obs (blood pressure and temp) are taken every few hours. Sometimes she sleeps through it, sometimes she doesn’t. She is, at times, on an overnight feed or water drip which the nurses set up and take down in the night – we will have to do it ourselves when we get home. And of course,she needs the toilet in the night, especially when on any kind of drip. When Anna wakes in the night, then so do I.
Medicine rounds are at 8, 2 , 6 and 8. Depending on what day it is and what additional drugs are required (eg painkillers) she might have between 1 and 5 to take at any of those times. The nurses measure and fill the syringes and then Peter or I put them in through her ng tube. We will do the whole process at home.
‘Mummy, I’m hungry’ is something Anna says a lot. A side effect of steroids is a feeling of being really hunger but it seems to be a hunger that is difficult to satisfy. So, at any time of night or day, she might ask for olives, cucumber, rice crispies, cheese dip, nachos or pasta and butter. These seem to be her favourites. The night time hunger has abated since stopping the steroids – I’m very glad as making pasta at 3am wasn’t much fun!
On weekdays, Anna has sessions with Jenna, her physiotherapist and Natalie or Charlotte, her occupational therapists. Her interaction depends on how she is. On a good day she will be on her feet (supported) for a while, sitting at her table or playing with them on her mat whereas when she is weak and feeling rubbish she will struggle to even be sitting upright in her bed ( this is how she was most of last week). We also have exercises to do with her during the day.
The play therapists are on the ward Mon – Fri and organise activities, mainly arts and crafts, which Anna enjoys, again depending on how she is feeling. She loved making this dragon on Friday to celebrate the Chinese new year.
Other times we play with some of the lovely gifts Anna gets.
The doctors come round every day to discuss Anna’s progress. We also see the dietician (Leisa), out reach nurse (Bernadine), social worker (Elaine) and kindred (parent support group) worker (Veronica) on a frequent basis.
At times, it can get very busy in this little cubicle!
Anna’s temp has now been down for 48 hours so we will have a discussion with the doctors about going home. I hope it is very, very soon.
Just a quick update tonight. Anna’s shingles is almost gone. However, she still has an unexplained pain in her upper chest and her temperature over the last few days has been high, going over 38 * today. She has had blood cultures, nose and mouth swabs, chest X-ray, scan and ECG ( piggy has had one too – you can just see his tags). We are all a bit puzzled. Maybe it is reflux? She is a lot better in herself today, chatting and engaging much more ( although you can’t see that from the look on her face in the photo!) Home looks unlikely before Saturday at the earliest…
Update by Anna’s Dad:
Have been advised that Anna will be moving from Ward 4 back to Ward 2 this afternoon as Anna’s shingles are no longer considered contagious.
Anna has been in a lot of pain with her shingles. It is so sore that she is reluctant to move. At all. We have finally moved her on to morphine tonight. It has been difficult to get her to speak, let alone smile. You can see how miserable she looked when Nathan arrived.
However, Nathan is the one person who really knows how to make her laugh. A few minutes with him (and a whoopee cushion) and the following happened…
What a fantastic big brother!
We’ve had really good news regarding Anna’s 28 day bone marrow sample. At the beginning of the block, a bone marrow sample contained massive amounts of leukaemia cells. In a bone marrow sample taken on day 28, none were visible when viewed down a microscope. This is as good a result as we can get at this stage! The bone marrow sample will be analysed in greater detail in the lab to identify if there are any non-visible cells remaining but certainly we are delighted. We are told by the doctors and consultant that this 28 day sample is considered to be a very effective indicator of progress. We are so pleased!
Anna’s first block of treatment has come to an end. Children can be put on regimen A or B (I think that there are only the 2 regimens but not sure) depending on how they first present. She is on an adapted version of regimen A. It is adapted as one of the chemotherapy drugs can cause weakness in the leg and arm muscles. In Anna’s case because she already has an underlying weakness due to her SMA, the worst case side effect could be permanent paralysis – so everyone agreed she should have an alternative! During this 5 week block she has had daily steroids and weekly chemotherapy. It seems to be the most intensive and aggressive part of the 2 year treatment. For the next block we will (hopefully) be back home with weekly trips in to RHSC for Anna to have chemotherapy under a general anaesthetic. It will be inserted into the fluid around her spine and brain as a preventative measure. She will have other medicines to be given at home. Poor, poor Anna. She is being such a good girl but really is very weak at the moment. However, the shingles seems to be responding well to the anti-virals and we are hoping to get home sometime next week. Although she has isolation nursing, Peter, Nathan and I can come and go. Nathan continues to be a wonderful big brother, giving Anna hugs and kisses.
Tonight, we should have been in Disneyland Paris. After Anna’s Spinal Muscular Atrophy diagnosis in June 2011 (see The Jennifer Trust for more information on SMA), we wanted to organise a special treat for both Nathan and Anna. The diagnosis for Anna’s neuromuscular condition had taken around a year and a half, starting with self referral to our local GP when she was 18 months old and then subsequent referrals to St Johns Hospital (Livingston), Royal Hospital for Sick Kids (Edinburgh) and The Muscle Centre (Newcastle upon Tyne). That process, along with coming to terms with her lifelong muscle weakness/wasting condition which would severely impact on all aspects of her movement and mobility, was hugely difficult. For me, organising something that would give the children absolute pleasure was a way of trying to do something for them since I couldn’t do anything about Anna’s condition itself. The Family Fund had given us Thomas Cook vouchers which covered the cost of 5 nights accommodation in the Disney Park hotels and park passes for the family – what a fantastic charity they are! We had used up about 10 years worth of nectar points to buy Easy Jet flights to and from Paris for all 4 of us. Nathan and Anna (luckily) didn’t know anything about it – we were going to tell them on Christmas day.
Instead, Anna and I are in isolation due to confirmed shingles (quite literally – this is the sign on her cubicle door)
What about our travel insurance? Well, we are insured but the excess seems to be £30 per person per section of the holiday. So we would end up paying a huge excess to recover vouchers for a holiday we couldn’t use. That seems ludicrous! Rather than do that, we have gone directly to Easy Jet and Thomas Cook.
Easy Jet have responded fantastically well, agreeing to refund all flight costs at no charge.
We are still waiting to hear if Thomas Cook will look at the circumstances and be flexible.
Anna is sleeping. She will wake in the night, hungry, but for now she is happy and comfortable.