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?
 

Saturday, 1 November 2014

A survivor's tale.

Periodically Mr Brian Montgomery posts his story to the facebook page of a medulloblastoma group I am a member of. We have asked him to post every few months or so, so that new members benefit from his story and existing members continue to be  uplifted. I have copied it here partly so I don't lose it and partly so that you can all share in a tale that gives us hope and light.

Thank you so much for sharing it with us Brian!!

Brian says:

"This is my story of HOPE for others 
The year is 1972 I am a normal 10 year old boy in 5th grade a little small 65 lbs.. I get sick, Flu symptoms, stay home from school a whole week, with no improvement… getting worse actually, cant keep any food down and headache begins. I am put in local hospital, for over a week tested and retested by many doctors with no diagnosis some even said that I was faking (that it was all in my head) “they were right”

Along comes another doctor and in a short time gives everyone the answer “Medulloblastoma” by this time I am in such pain that I am drugged (knocked out 24/7) There is no Neuro surgery done here and no Helicopters. I am immediately placed in an ambulance and driven the 100 miles to Dallas, Texas, St.Paul hospital where an operating room is ready and waiting for me. The 8 ½ hr. surgery goes well, in recovery at hospital for do not remember how long. When I leave the hospital I am down to 35 lbs. at 10 yrs old and in a wheelchair, until I put some weight back on and learned to walk again! I took all of the Cobalt Radiation treatments I could take without dying of radiation poisoning.  I had no Chemo (still being developed at the time) and no other drugs that I can remember. I later learned that my parents had been told that I would most likely only live “maybe” another year! 

I missed half of the 5th and a part of the 6th grade but was passed on to the 7th grade so I could stay with my friends until I died. I struggled thru the rest of school but did graduate high school on schedule (I was 18yrs old 4’ 10” 90 lbs.), and went on to get an associates degree. I received every year for years a questionnaire from the hospital asking how I was doing. Then after about 2 or 3 years later I got a reply back suggesting that I was not growing properly and it was offered free of charge for me to go back to Dallas Children’s hospital and be tested. They had to draw blood every 30 minutes for 24 hours, about 13 hours in, my little veins collapsed and they could not get another line put in. After many tries I told them no more pokes! It was determined that my size was from heredity. 

I am now 53 yrs. Old 5’00” tall 175 lbs. The exact size of my grandfather a WWII veteran and close to the size of everyone on my mother’s side of the family. I am married with an adult son. I have been an OTR Truck driver, Corrections Officer, and I ride Motorcycles, with the Patriot Guard Riders. My hair did grow back, I grew it back shoulder length (the 70’s), although it was thin. About age 45 got bald spot. Just keep it shaved now.

I have not seen a doctor for anything related to Medulloblastoma in 43 years.

I hope and pray all goes as well for everyone.

P.S. I also got the Shingles on the right side of my head around the age of 11, and still feel the effects from that! And learned too late I am “more susceptible to skin cancer” from sun after having radiation treatments. Cover when in sun!


My story may be copied and reposted by anyone, anywhere, anytime, but please let me know when and where. Thank you."


Tuesday, 28 October 2014

Our SPECIAL child

I haven't written for a while. Things have been a little strained lately, so much going on.

The good news - and the most important news- is that Adi's latest MRI scan was clear! we have now gone down from scans every 3 months to every 4 months!! We were also passed over to a more junior consultant. We are lucky that our lead consultant is very conscientious  - she rang us herself to tell us our results were good and we know she is still very much overseeing Adi's case.....we take comfort in the fact that she now feels able to leave us in someone else's care, it means we are no longer a priority. We have learned that being a priority in the NHS isn't necessarily a good thing.

We have struggled, however, with the news that Lachlan Whitely, the little boy who inspired the charity Unlock a Life for Lockey passed away this month. Also a little boy who Adi went through radiotherapy with, Sky, is now receiving palliative care. His family is fundraising for more research into ependymoma - visit his mum's just-giving page here: https://www.justgiving.com/marie-harrington-ellis/ . This is the world we live in now, where people we know and care about lose their children in the cruellest, most painful way. They are not just pictures of smiling bald children on Cancer Research's leaflets, that we can dump in the recycling bin anymore. By the way, bear in mind, only a tiny, tiny percentage of Cancer Research's money goes to investigating paediatric cancers, even less to the rarer ones...so if you want to donate, give the money to a specialist fund such as Sky's above or the Brain Tumour Charity .

So with the turmoil that all cancer families go through, you have got to wonder at a system that makes life more difficult for you, not easier.

Adi has settled in nicely to school - she is happy going in every day and has friends. She is bright and there is no reason why she can't achieve anything she wants to as long as she has the support she needs. It is getting that support that is difficult. We applied for an Educational Statement in July, just before they changed to Education and Healthcare Plans (EHCP) in September this year. We put in the application on the advice of Redbridge's Special Educational Needs team to get things started before the EHCP came in. Our submission was comprehensive, containing all information about Adi's medical conditions (ears, eyes, mobility, speech, emotional and cognitive) and what we considered her educational needs were (bearing in mind that David is an experienced SEN teacher). A few weeks later they rejected us citing information from the school as the reason and recommending a new application be submitted the following term, in January. To add insult to injury, the Borough's tribunals officer also decided that she didn't need to meet with us to explain the panel's decision, despite it being her job to do so. We were puzzled but when it transpired that the school HADN'T EVEN BEEN ASKED for information, nor had ANY of the healthcare professionals involved in Adi's care been approached, we crafted an email to the Chief Executive of Redbridge Council and our MP...the SEN team had already screwed up once, there was no point in mucking around with them any more...Adi's education is far too important to play games. Within days the tribunals officer was on the phone apologising for not meeting us but STILL she insisted that we needed an assessment by the educational psychologist before they would go ahead. We had asked for a ed psych referral but Adi was not going to be seen until the end of November! I would like to point out here that an ed psych assessment is NOT a statutory requirement for an EHCP to go ahead and we had already submitted evidence from the neuroendocrinology consultant and the neuropsychologist at GOSH that Adi would need support in school!! So, after 2 hours wasted on the phone being patronised by the borough tribunals officer, another email went off to the Borough pointing out the idiocy of prioritising the opinions of a person who will meet Adi for maybe an hour over those of world-leading experts who have been caring for our daughter for over 2 years. To cut a long story short, we have received an apology, our MP is keeping an eye on things and the assessment is now going ahead. We are having a multidisciplinary meeting (us and all the healthcare and educational professionals) in early December to agree a support package for Adi. A relief, but the stress of going through that process is huge and we are well educated, well informed parents who have a great support network. What the hell do you do if you aren't that lucky? I am sure many parents would have obeyed the first rejection letter. On top of all of that, has been the stress of NEEDING to apply in the first place. Accepting Adi has special needs has been hard - putting it all in writing, even harder and we are not yet at a place of equilibrium. Even though Adi is doing so well, we live with so many unknowns - how the effects of radio and chemo will effect her long term - her IQ, cognitive processing, her hearing, sight, ability to have children - things we are seeing now, things that are deteriorating now and others yet to come.

Our troubles pale into insignificance against the back drop of the families are losing their children. We give thanks every single hour of every single day that we DO have these troubles, that we DO have a child in school to fight for. Some parents of survivors say they feel guilty to report that their children are getting on with their lives when others are losing theirs but I know how just how uplifting it is to hear from other medullo parents about their children passing exams, achieving major milestones, getting married, LIVING. We still live in fear of the unknown and very much under the shadow of relapse, so hearing the good news stories of children 5 or 10 years down the line is so very, very important. We don't feel guilty, we just feel very, very blessed.


Wednesday, 10 September 2014

Big School!!!

Adi started reception last week! She is at BIG SCHOOL NOW!!

She has settled in really well and is very happy. Adi is showing me yet again that all my fretting about her being able to cope with a whole day at school is just unnecessary. She is such a determined fighter.

Now we have to make sure everything is in place to ensure she can do the very best she can do. Adi's determined nature means that it is easy to miss when she is struggling with something. Over the holidays we found that Adi needed her hearing aids turned up as her hearing has deteriorated quite a lot, particularly in her left ear - this happens with ototoxicity (hearing loss due to chemotherapy). They don't know if it will continue to get worse or at what point it might stabilise. Her poor sight in her left eye, especially when she is wearing a patch on her right eye, will affect her ability to see the board and what the teacher is doing. Adi is still not as steady as the other children when it comes to physical activities and is likely to be left behind when her friends are running around. On top of all of that are the hidden issues - the cognitive development issues that we are not aware of yet and may only be obvious as she progresses through the education system.

We applied to the local authority for an 'Education and Healthcare Plan', which will allow Adi to access more support in the classroom but have been turned down. Apparently this is normal, very few children are granted extra support on the first application. It just begs the question 'why?'. Parents of children with special needs have enough stress in their lives, why is it necessary to pile on more?

We have been told that if Adi gets the support we need now, then there is no reason why she can't live a fully independent and useful life when she is an adult. Without the support now, she may continue to need additional help (and cost the taxpayer more)....so why oh why does it need to be so hard to get that help?

I am confident that with the school's support, Adi can achieve anything she wants to but wish it wasn't so difficult to get there!!!

Friday, 22 August 2014

People are wonderfully kind

We've just come back from a lovely holiday thanks to the Emily Ash Trust - who's caravan we stayed in this week. We hadn't booked a holiday as we couldn't think past Adi's July scan but as soon as it was over, we realised that we really needed to get away. We were very lucky that Emily Ash understand that families may need holidays at short notice or to cancel them as well and we were able to book their caravan in Battle. A whole week of swimming and beaches and farms and science and making new friends.

When we got back there was an amazing gift waiting for us - a playmobil hospital - that a very, very kind person had sent to Adi after hearing how much she loved playmobil and how role play was helping her work through her anxieties. Just the best present anyone could give her - Adi's thrilled and been checking the patients ears after our visit to GOSH this morning.

Thank you Ebay Seller, Michelle!!
Yes, not even one day back from holiday and straight back into hospital appointments  - Adi's hearing aids needed adjusting quite significantly to counter her continued hearing loss in her left ear. She's now got to get used to the louder sounds - so they haven't turned it up the whole way, we will have to go back for the next level in a few weeks. The audiologist at GOSH has also been lovely and will be writing a strong letter for us to help us get Adi a much needed education healthcare plan. We found out this morning that we have been turned down by the panel but that is for another, moanier post. For now I just want to think about people's kindness and generosity  - lifts me every time and makes horrible days easier to deal with.





Saturday, 9 August 2014

Eyes, ears and whiskers

Adi had appointments for eyes and ears at GOSH yesterday.

We needed to go back for ears as they suspected the hearing had got worse in her left ear a couple of weeks ago - we were hoping it was just because she was tired but the yesterday's test indicates that it has got worse. We will be going back in a couple of weeks just to make sure and for them to adjust her hearing aid accordingly. That's the trouble with hearing damaged by chemotherapy, they don't know what effect it will have over the long term, if it will get worse or even better.

Adi's right eye has got pretty good vision but her left eye is now nearly blind. We have been loosely trying to improve it through patching the right but Adi hates it and tends to take her patch off after 30 minutes. I've been pretty lax with it as I hate to cause her any more discomfort and have been avoiding the arguments. Until now, the consultants have also been pretty relaxed about it  - their view has been that she can manage fine with one good eye. However, if we are going to make a difference we have to do it now, before she gets too old and, with her hearing being more fragile, I have had a wake up call and need to pull my socks up.

 On the way home from GOSH Dave and I had to come up with a new scheme. We have tried reasoning, reward charts and threats but Adi doesn't really understand the reasoning or relate the chart to an actual prize at the end. She certainly doesn't pay any attention to my threats....hmmm....may have to rethink my earlier flippancy about spoiling Adi! So we ended up visiting the Toy Shop and coming out with a playmobil park (luckily on special offer). Adi loves playmobil and this has several different parts to it - swings, slides, bikes, bbq. We allowed her to  choose one part for being so good and the other parts she has to work for. For every day Adi wears her patch (and it has to be for at least 6 hours a day), she will get a star. She puts that star on the picture of the toy she wants and when she gets to 5 stars, she gets that toy - not too often to bankrupt us and not too distant that she loses interest in her reward. We still have a chance to improve her left eye and we need to take it.

I was a bit shaken yesterday but in the grand scheme of things we know it's not bad. I was also glad to meet Paula, GOSH's sight liaison person and her guide dog Greg. We didn't know Paula existed until yesterday, and it was a chance comment to the play worker that led to our introduction to her....we find things like this do get overlooked quite a lot. We also only found out about Radar keys that unlock all disabled toilets in the UK a couple of weeks ago!! Paula deals with all things not medical, so was able to advise us about Adi's educational statement and help us understand how Adi would learn to live with her disabilities much better than we would! A word of advice though, if you are going through any similar experiences - talk to people. Join facebook groups, talk to others in similar situations, even if you don't feel like it - it is often the only way you get to hear about small but important things like radar keys or the Paula's of this world, and every little thing like that makes life that little bit easier.

Thursday, 7 August 2014

Thinking of Lockey

This little boy is call Laughlin (Lockey) Poyser. He is sitting on a pile of boxes that are destined to bring smiles to children in GOSH who are having bone marrow transplants. Lockey knows how miserable that is, he had to undergo a transplant himself. The boxes were his idea.

It was also Lockey's idea to have a happy beach hut where children with brain tumours could have fun day's out. We've spent two very lovely days there ourselves. Lockey also knows how miserable that can be as, before he had leukemia and the bone marrow transplant, he fought a medulloblastoma - the same brain tumour as Adi.

So it's not very fair that yesterday he and his wonderful family found out that Lockey has had a relapse. Today the team at GOSH are talking to their comrades in the USA to try to find a way  - experimental even - of keeping Lockey with us. Please send him your love - visit his webpage -pray for him - think of him. Send him all the wonderful, positive vibes that you sent, and still send, Adi.

http://www.unlockalifeforlockey.co.uk/