Thursday, 14 May 2015

Our big girl!

Adi is coming up for her next MRI scan on 5th June. She asked me a couple of days ago when it is and then started to say she didn't want it. 'Why not?' we  asked, 'because I feel so yukky afterwards' she answered. Unfortunately Adi has to have all her MRI scans under general anaesthetic so she doesn't move or get scared by the machine - which is huge and very noisy. When she wakes up she is very groggy and grumpy, so I totally get where she is coming from. Up until this year Adi has been fine about the scans, even though my husband and I get increasingly uptight as we approach scan day but the last scan she started to get nervous the day before and this time it seems to be a bit worse.  We are not sure if she is picking up on our nerves more because the scans are now not as frequent or if she is just maturing in her own thoughts and opinions. Either way we have to find a way to calm both ourselves and Adi. We have told her that we will talk to the anaesthetist beforehand and see if they can do anything to help her feel less yukky. We are also going to have her favourite food and drink on hand when she wakes. Other than that, there isn't a lot more we can do besides keep her reassured.

Asher has been a tower of strength for Adi these last few days...making an effort to distract her when she gets herself worked up and stressed. Making her laugh and playing with her is his speciality. We just found out this week that he might be colour blind for red and green. It may sound odd but Asher seems quite happy about this...we think it has a lot to do with the additional attention that Adi receives...he often says 'I'm deaf' or 'I can't see', when both his hearing and sight are pretty much perfect. Having a sibling with a serious condition undoubtedly has an effect on kids and it is difficult as a parent to work out what to react to, what needs special attention and what is normal behaviour.

On a plus note, Adi has been taking charge of her own jabs of growth hormone. It's quite involved.......Adi screws the needle into the pen, unsheaths it, takes off an inner sheath without bending the fragile needle, pulls back the needle to prime it, sets the dose, finds a suitable site on her tummy, presses the button to jab the needle in, presses another button to release the drug and then counts for 6 seconds to make sure it is delivered properly before pulling the needle out STRAIGHT to avoid scratching! Phew! All I do is hold the pen steady for her! So we were thrilled to hear Adi's endocrine nurse say that, at 5, Adi is the youngest person she has ever seen administering her own growth hormone injections...the next oldest being 7! Our little girl is growing up and just look at her go!

Friday, 17 April 2015

Move over Jo Frost!!

I am feeling like a Super Parent at the moment!

Last Friday, Adi started her growth hormone jab again. She was mentally prepared and even looking forward to starting again!! So, this time we followed the psychologist's advice (see earlier post) and just Adi and I sat down whilst Dave distracted Asher elsewhere. Adi wanted to take control, so I let her put the new needle on the pen, prime it and set the dose. All I did was steady the pen whilst Adi chose where the jab was going to go, pressed the button that released the needle and pushed down the syringe to administer the hormone. DONE! PHEW! Adi was happy, I was happy and I felt that we were back on track. We repeated the same process smoothly on Saturday and I was breathing easy...then....Sunday..........

On Sunday, Adi changed her mind for some reason and began to say she didn't want the jab. We were back to crying and delay tactics. We were all getting stressed and miserable. Dave and I had the psychologists words in our heads that this was NOT optional, so we held Adi and administered the jab ourselves. Adi was distraught, Asher was upset, I beleived we were back to square one and had screwed things up royally. The next hour was pretty horrible. Adi was still upset insisting that she wanted to do it, she wanted to do it! So I took her upstairs, laid out the syringe and needle and said that she COULD do it. I set the jab to the very smallest dose and allowed her to go through the process again but, this time, on her own terms. I explained that she HAD to have this jab and that she had to decide whether to do it herself or have Mummy and Daddy do it. Things were calmer instantly.

The next night, Adi tried to protest, cry and tried to delay but I was firm that if Adi didn't do the jab, Daddy and I would intervene. I had to call Daddy to the doorway abut it was enough to get Adi to deliver the dose herself. Tuesday, just threatening to call Daddy to help was enough incentive and Wednesday and Thursday Adi was calm and even instructing Asher in how to do the jab. She is back in control and back on track. 

To say this hasn't been fun would be an understatement. Encouraging your 5 year old daughter to stick needles in herself isn't something I can recommend, even if it IS for her own good. In fact, our victory is tinged with a lot of sadness.....I hate that she needs this, I hate how it is administered, I hate that we've had to bully her, I hate why she needs this BUT it is another challenge we have overcome together and we have come out stronger again. We are learning so much through our little girl.

Tuesday, 31 March 2015

Learning curve

A quick update on Adi's eye. It seems that no matter how much we patch Adi's eye, she won't improve significantly. The hospital has said that we COULD improve the sight by a couple of lines on the optician's chart but that in order to achieve this we would have to continue to patch intensively and that will have a major impact on her schooling, ability to interact with her peers and general enjoyment of life. So we are going to continue to patch for just a couple of hours a day for the next couple of months, for a sort of last try...but it is a bit of a half-hearted try I think. On the plus side, Adi could read the chart better than me, when she was allowed to use her good eye AND they don't think she will completely lose the sight in her left eye, which is what I had been led to believe previously. I have to admit to feeling relieved that we don't have to do the patching anymore....but then it's not my eye is it........?

With regards to the growth hormone, the psychologist was very helpful. She has suggested making a date with Adi when we are going to start and we will not move from that. Adi is very aware of times, days and dates - so she understands the count down to restarting. I told Adi that we can do it in her tummy again or her leg and that would mean that SHE could give HERSELF the jab. Her face said it all - the relief and joy that she would be able to take control again showed me that control was the major factor in Adi's fear. Another interesting thing is that we have tried to include Asher all the way along this journey. Making sure he knew what was happening, visiting hospitals, watching some procedures (such as blood transfusions) and even helping to give medicines or calm Adi. We did this for both their Adi had her big brother nearby and Asher did not feel excluded and so he could better understand what was happening. So we did the same for the growth hormone jab, which was fine when Adi was happy to have her jab but turned out to be very distressing when Adi started to fight it. Asher would try and calm her, get upset, get in the way and then get shouted at........the psychologist pointed that by having the whole family present when Adi had her jab, we were making it into an EVENT, when really it should be something as mundane and accepted as brushing teeth or getting dressed. A good point, we hadn't considered. Soooooo at the end of the school holidays we will try again. Adi is practicing with her dummy needle and starting to reintroduce a routine and when the day comes, Dave will take Asher upstairs to play and, I hope, we can start again without too much fuss. Keep your fingers crossed for us!!!

Thursday, 5 March 2015

Growing pains

Things have been a little hectic this month. The brilliant news is that Adi's scan at the beginning of February was stable and the oncologist is very happy with her progress. Onward to the next scan in June! Adi is very happy in school, her speech is improving, she has good friends and she is enjoying learning so much.

But in other areas we have work to do. The oncologist is referring Adi to an ear, nose and throat specialist to investigate why she is permanently bunged up and nasally. The sight in Adi's left eye has worsened and will continue to decline if we do not make it work. We have been patching the right eye but Adi is prone to cheating and, because it makes her so vulnerable, we haven't been enforcing it so stringently at school or when we are doing active things. The ophthalmologist has given us a slap on the wrist, a stern talking to and some eye drops to blur her vision in her right eye. The school has been fantastic and is now enforcing the patch all day long, I have been putting the drops in at night so Adi doesn't know but it is heartbreaking as she tries to look at books and can't understand why they are all blurry. I hate doing this but if we can save the sight in her left eye then it will be worth it - we find out later this month if the intensive patching has been working.

We also have some issues persuading Adi to administer her growth hormone. We were doing really well at first but then it started working. This means that Adi's little baby tummy became firmer and less fatty, meaning the hormone jabs started to hurt and leave small bruises. Our endocrine nurse (from the growth hormone company) has been fantastic and been round to talk to Adi and try to persuade her to let us do the jabs in a new place but this is round the back -where the 'love handles' are at the top of the bottom (if that makes any sense). Unfortunately, Adi has no control over this and can't do the jab herself, so we have had fights and tears, going on for an hour or more. It was upsetting for all of us, especially Asher, so we have had to take a break and tomorrow will be seeing the hospital psychologist to see if they can help us. It's not pleasant but it is just a tiny jab that is over in less than a second, so it shouldn't be quite this tough...but then it is Adi's determination that has got us this far! Someone said to me, 'Can't you just do it? Just grab her and do it?'. Well yes we could, if we want an hour long screaming fit and a child who won't then settle at night. And yes, we would if it was just for a short time but Adi will need this hormone for the next 10 years at least, so we need to ensure she is as comfortable with it as possible. I know this person was trying to be helpful and it wasn't bad advice, I generally am a 'rip the plaster off fast' kind of person BUT we have done some truly horrific things to Adi.  We have had to cuddle Adi and tell her everything is OK whilst poison was being poured into her veins, we had to pretend it was normal that her ears and face were sore when she woke up from radiotherapy, we have to hold her tight as dressings are being ripped off or needles are inserted, we have to make sure she doesn't know how scary it is every time she has a general anaesthetic, and we have to pretend it is normal to have frequent hospital appointments and consult with doctors about every little thing. It's tough and tiring so you'll have to forgive me (and probably every other parent of a special needs kid) if I seem to be looking for an easier route whenever I can!! Trust me, we rally when we need to but when we need an inspirational shot in the arm, all we have to do is look to our kids!

Wednesday, 4 February 2015

Our little girl is 5!!!!

Alice the Tooth Fairy - courtesy of Mystical Fairies
Every 5 year old girl is a little princess but seeing out little girl reach her 5th birthday was so very, very important. I tried to pretend to myself that this was a perfectly normal birthday but it wasn't really, no matter how hard I tried.

We had the most wonderful birthday - a small party at home, visited by the Tooth Fairy and full of lots and lots of fun, dancing and laughter. Thank you to Mystical Fairies for sending us the best  fairy ever!

Adi went on to celebrate her brother's 7th birthday the following week by beating all the 6&7 year old boys at bowling!

It's been a lovely couple of weeks of birthdays but now it is back to business. Tomorrow we have the next scan and next week is full of appointments at GOSH. Updates to follow.

Thursday, 1 January 2015

Happy 2015!

Goodbye 2014 - it's been a bit of a bumpy ride but overall, 2014 has been good to us.

We started with a wonderful holiday in Disneyland Paris, have celebrated a year out of treatment, seen Adi start reception and settle in well, steer a pony by herself, moved from 3 monthly scans to 4 monthly ones (woohoo!) and finished the year off with a party at No. 10 Downing Street!

Meeting Samantha Cameron

Santa....(his reindeer were parked outside...really!)
The party at No. 10 was particularly fun. Adi got to meet Paddington Bear and dance with princesses, Asher got to meet his tv heros, Dick and Dom (who were lovely), I got to have a nice chat with Mrs Cameron and David got to drive the car into Downing Street.

We attended as guests of the wish charity, Rays of Sunshine, who were also kind enough to send us to Disney. It was intimate enough to allow us to talk to other families and make new friends and for the kids not to be overwhelmed. Adi was a little bit miffed at missing her riding lesson but Asher understood the significance of going to No. 10 and meeting the Prime Minister..what with that and meeting Dick and Dom, it was lovely for him to have such a special treat.

Despite the emotional ups and downs, we feel very blessed that Adi is so well at the moment. She is funny, determined and absolutely set on enjoying her life to the full and dragging us with her. Asher is kind and gentle and very, very patient with his spirited little sister. They are our inspiration and we are so proud of them both.

......and of course the Prime Minister!

As we start the new year, we have a lot to look forward to. We are now starting to get on top of the housework, Dave is looking for more secure/regular employment, I have joined the gym to try and regain some semblance of fitness so I can keep up with Adi's furious energy. I am even planning to repaint the house  - it is time to refresh and move forward. Every couple of weeks, life will be interrupted for a scan, assessment, meeting or check up but it is our new normal and we are grateful that is all we have to deal with, especially in light of what some families close to our hearts are dealing with right now.

We are making a start with a party for Dave's birthday on Friday and also to mark 2 1/2 years since Adi's diagnosis. We have a lot to celebrate and we are going to make the most of every opportunity. Happy New Year everyone...we hope that 2015 brings happiness, peace and many, many joyful times xxxxxx

Wednesday, 26 November 2014

Growing up and up and up!

Even though Adi's radiotherapy was targeted and limited to the site of her tumour some of it still scattered and effected other areas in her brain. This may well lead to a 10% decrease in her IQ and effect her memory and other cognitive processes but we may not know exactly what impact it's had for some years. A more immediate effect, however, is that on her pituitary gland, which is where the growth hormone is made. The radiotherapy knocked the pituitary gland out and though it is making some growth hormone, it is not making nearly enough, so Adi needs a helping hand. The endocrinologist predicted this a while ago and gave us a pile of DVDs showing the different options available to us. Essentially, Adi will need growth hormone every day for the next 10-12 years and we had to choose the best method of delivery. The hormone is just replacing what Adi would produce normally and won't have any adverse effects.

Bearing in mind that I had stupidly promised Adi a while ago that she wouldn't have to have any more needles (why did I do that?), I was twisting myself in knots knowing that she was facing a jab a day. We put off looking at the DVDs for as long as possible but started working our way through them the night before we got the results of her endocrinology test. We didn't get very far as I had already decided that the needleless method was the one for us. With one click it whooshes the hormone through the skin into the body. That was the one for us.....well it was until our friend said that her daughter was getting very bruised from it. Adi suffered badly from bruising when she had to have jabs to increase her neutrophils during treatment, so I wavered and went back to watch the other DVDs. I was watching one showing a young girl giving herself a jab when Adi came along to watch. She is very interested in all things medical and was asking what she was doing. I explained and then said....'do you think you could do what she is doing?', Adi asked a few questions about the size of the needle then said 'yes'. Wow. 

After talking to the endocrinologist, we settled on a brand that comes with very good homecare - they send a nurse to show you how to administer the hormone (she used to be an endocrinology nurse for GOSH, so result there) and she is on call if we have any problems at all. The other benefit to this brand is that we can keep the stuff out of the fridge for 20 days, so can just take the pen with us and not worry. SO, last night was the big night.....we had the box of equipment - Adi had been looking through it, examining the pen and the needles. She was fine about it all.....she had watched the explanatory DVD several times and even taken it to school to show her friends. Asher was quite apprehensive, he was very worried about the needle thing. I was very, very nervous.

Sinead the nurse came bang on time and spent an hour making sure that we all understood how to work the pen, load it and use it. Adi and Asher both practiced pressing the button and giving the dose. She then showed us with a saline solution how to do it to ourselves....I made myself do it...after all, if I was reassuring Adi, surely I should have the guts to do it myself! I did it and felt barely a thing! David had a go...he's more sensitive than me and kept staunchly quiet.....then it was Adi's go...she took a sharp in breath and that was it! 

'It didn't hurt at all', she told Grandma and Grandpa later. She is very proud of herself and of the certificate and star chart she got...she is also very happy with the dolls she was given. We are hugely proud of our brave girl and I am so, so relieved that my fears were hugely out of proportion with the reality! Once again Adi knocks it out of the park!! When will I learn?