Wednesday, 28 October 2015

Looking backwards, looking forwards.......

September was childhood cancer month. I meant to write a post but couldn't quite bring myself to do it. During September we rejoiced in tales of other medulla kids getting engaged, passing exams and living full lives, we were scared hearing of others who have relapsed after 2 and even 9 years, we remembered children who have lost their battles with cancer and offered support to families just starting out on this terrible journey. It's taken me this long to get back to the keyboard.

Childhood cancer isn't something that just happens and you 'get over' it. There are physical and emotional repercussions that last forever. Research into childhood cancer is also woefully underfunded, so if you are thinking of donating to cancer research, please consider a specific childhood fund.

They were delicious cookies!
However, looking to our future.....Adi is growing and fast! She has been amazing, doing her growth hormone jab herself every evening. There are no more complaints or cries, she just gets on with it more need for persuasion, star charts, bribes or threats.....Adi just wants tickles with Daddy as her well deserved reward! The endocrinologist at GOSH confirmed last week that she has grown 6cm in the last 6 months! Adi has noticed the difference, she can reach light switches and is definitely more confident in her movements, so she knows the jabs are helping her. We are thrilled at how well she is doing.

We have had a few hiccups...I have started tutoring in the evenings and have been doing increasingly well but the more nights I was out, the harder it became for Adi and she started to become increasingly unsettled - Asher has been a superstar in helping calm her but I have had to slow things down a bit.  On the subject of work though, Adi is now trying to decide what she wants to be when she grows up..a doctor, a beautician, a teacher or a cook are all possibilities.....and Adi is sweeping us along on this exciting journey with her!

Thursday, 20 August 2015


Would it sound odd if I said I thought we were lucky?
First bunches - only took 2 years!

It was and is the worst luck in the world for Adi to get a brain tumour. There is NOTHING lucky or good about getting a brain tumour and even though we have been blessed enough to have experienced just how kind, caring and amazing family, friends and community are in times of need. Even though we have seen amazing generosity and thoughtfulness from complete strangers, even though we have seen the very best, bravest and heroic facets of our children and others, I would forgo all of that for Adi to have NOT had a brain tumour.

Despite the treatment finishing and clear scans, it is still ongoing - we live in fear of every scan, she has been left with hearing and sight impairments, potential cognitive impairments, difficulties with movement and hormone deficiencies. She is constantly missing school for various hospital and clinic appointments for eyes, ears, MRIs, ENT, speech, endocrinology, neuropsychology and other stuff to address the after effects of the chemo and radio therapies. But I still consider us lucky.

Last weekend we had to stay in GOSH overnight for a sleep study. It was unexpected - we were referred and offered the slot within hours of seeing the doctor - so Adi wasn't well prepared but we thought this was best as Adi can work herself up into a panic if given too much time to dwell on something (like her MRI scans). Adi had objected to going in so I worked hard to be upbeat, the staff were lovely and there were no needles or invasive procedures, only some electrodes stuck to her skin but I could tell Adi wasn't happy by the way she went stiff but she would only tell me that she was OK. For me, sleeping in the hospital brought back really horrible memories, especially when I followed her, hoisting monitors and wires with me, when she needed the toilet. All I could think of was doing the same with drips filled with toxic chemotherapy. I wondered how much Adi remembered, it was clear she hated it all. She hated the wires, she hated the strangeness, she woke in the night crying, asking to go home and needing a cuddle, and the next day told me that one of the sensors had been pulling and hurting her all night. We were both pretty shaken by it and it took a few days for her to settle properly. Let's also not forget Asher, he was rattled that mum and sis were away for the night. Although he said he didn't mind in reality he did, he did not sleep well. He made huge efforts to help Adi feel better when she got home - talking to her to reassure her and giving her a toy that would look after her if she ever had to sleep away from him again! 

I am so grateful that this was a one off and that we don't have to stay in the hospital anymore but it was a stark a reminder of what we went through and what other families and children are going through. Having a tumour wasn't lucky but we know that Adi got off lightly compared to some other children. Just a year of treatment and she can walk, she can talk, she is learning to read, she can climb in the park, has a 'kick ass' attitude and she is HERE, WITH US. So are we lucky? Yes, all things considered, we are!

Wednesday, 17 June 2015

6 months!!!

Adi's scan at the start of the month showed no change!! Not only that but our oncologist has dropped us down from 4 monthly scans to 6 monthly ones. That was a huge surprise and left me speechless when she said it. I thought we would work down gradually to 5 monthly then 6 monthly scans over the next 18 months. This is a really big step for us - a bit nerve wracking as we feel we are being cut free from our safety net but exciting for the same reason. If that weren't news enough, our doctor also suggested that Adi has the next scan without a general anaesthetic! Adi is very happy at the prospect as it is the anaesthetic that she was so unhappy about prior to this scan. This is the first scan where she was really been unhappy in the run up to it and was worried about 'feeling yukky afterwards', though as you can see - a friend's top chocolate cake helped recovery somewhat!!

After the scan - recovering with Shani's
finest chocolate cake!
Whilst we are happy at the prospect of Adi not having yet another general anaesthetic (it is distressing every time she goes under) we are also worried that the MRI scan itself will prove a bit much for her. An MRI scan is painless but you have to stay completely still whilst you are slid into a giant tube which is very, very noisy beeping and grinding away while it scans. Adi would have to ensure 45 minutes of this and stay still that entire time. Not my idea of five-year-old entertainment. She can watch a video but my experience is that the scanner is too noisy to allow good viewing. We will be looking for videos to show Adi and discuss it with her, maybe even practice using a cardboard box as a scanner. We have 6 months to decide what to do....or at least we thought we did but 2 days after we met with the oncologist, I had a call from a nurse in MRI asking if we were having a general anesthetic or not as they had to book the anaesthetists. EEeeekkkk! I asked if I could think about it  'sure, call me back tomorrow'...'ummm I was thinking about a couple of months actually.......see she's 5 and, umm, things change quickly, umm not sure what to do...ummm'. I decided to book a GA and then we could cancel it nearer the time if we thought Adi would be OK. The phone rings 5 minutes later and the nurse in charge calls this time saying she had discussed the situation and would book Adi in for two scans. The first without GA and the second with. If all goes smoothly without the GA it would be easy to cancel the second scan. So a bit more relaxed all round!

Overall, they are very happy with Adi's progress. Particularly impressed with her ability to take charge of her own growth hormone jabs - I am not allowed to even touch the nordipen to steady it now! We are also seeing progress in other areas. This weekend we went away with the charity Camp Simcha. They assign each child a big brother or sister who befriends them for the whole 3 days, takes care of them and makes sure they have as much fun as possible. The parents are then freed up to sleep, chat to eachother and are even treated to a rare candlelit dinner for two! This is our third 'Retreat' but this year was the first year that Adi was relaxed enough to disappear on me. This year was also the first year that I was relaxed enough not to worry every minute she was out of my sight! I finally chatted to other parents that I hadn't spoken to previously and felt able to compare notes and show a genuine interest in other people's stories. This annual event has allowed us to look at where we have come from and how things have improved over the last few years, we are lucky and privileged to note that it IS improving.

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!