Tuesday, 30 July 2013

Ian Kellar's mammoth bike ride London-Edinburgh-London


Above is the link - though somehow on my phone I can't seem to copy and paste a direct link on here, but if you copy and paste the above and google it, it'll bring the page up.

Ian is cycling for the Neuroblastoma society and for the MPS society. The latter supports Harry's friend Sam, whom has a genetic disorder and thus he has a life limiting disease.

Ian commenced his cycle ride 07.15 from London on Sunday. He checked into Edinburgh last night at 23.25!

Now for the return 700km!

Fabulous stuff.

Please donate if you can and thank you to those who have already donated!

Monday, 29 July 2013

The boys on their bikes! Callum never smiles sweetly when asked!

Pictures of diggerland!

Monday 29 th July

So I last wrote on sat 20 th July! We had a really good weekend. Harry was well and enjoyed his party at wacky warehouse. We managed to have a BBQ with friends Graeme and Tina from Scotland and it didn't rain! We even visited the beer garden at The FLeece for a cheeky couple of beers.
On Sunday my parents took the boys to church, so Tina, Graeme, Paul and myself could go for an adult walk up thd chevin to visit Harry's tree and enjoy lunch at the cheerful chilli tea rooms. We had a lovely day.
Harry's patch was changed Sunday afternoon and by Sunday tea time I could see how the medication changes Harry 's personality. He becomes irritable, demanding and tired. He remained like this Monday morning. I decided on my own accord to remove the lower dose of patch from harry, reducing the dose from 62mg to 50 mg. my friend Kate visited and having seen him all fun and laughter Sunday morning, could see the stark contrast this medication has on Harry. Monday lunchtime Harry was sick, a side effect as we know from the fentanyl. However, afterwards he was fine, eager to go to school, so off he went with my mum for the afternoon! He had a great afternoon and this is where he settles down again, for a couple of days!
So Harry's great till we change the patch again on Wednesday and Thursday is again not a good day. Harry is sick several times, very unwell and thankfully went back to bed for a few hours.
I discuss Harry's fluctuations with our McMillan nurse in relation to the change over of his fentanyl patch and ask if we can reduce his fentanyl patch again, seeing as he seems in no pain at present.
It was agreed that I could reduce the patch to 37 mg when the next change was due and to increase his anti sickness medication.
Harry is again on fabulous form and we have a great day at Diggerland on Saturday. We went with our friends The Barracloughs. The weather stayed fine and we got on all of the rides. Love that place and again no queue was more than a few minutes! Callum really loved his solo driving experiences, such a racing driver in the making! Jensen Button watch out! There was a car crushing display too, which the boys - including Paul were eager to watch.
By closing time we were all diggered out! I had changed Harry's patch to the lower dose in the afternoon and taken all Harry 's medications with me including the extra anti sickness medication. Harry actually remained in good spirits once home and we all enjoyed fish and chips.
We had everything crossed that Harry would be well on Sunday and he was! He had a big lunch at my parents and enjoyed riding his bike. No sickness and no irritability! Yay! Harry is back! Hope we can can keep this up! Though Harry does have Shingles! The out of hours doctor examined a rash Harry has on his back and tummy, so he has some discomfort with this, but the cocktail of drugs he is already on is preventing him experiencing pain from it, thankfully! Though, as shingles is a derivative of chicken pox it has meant our planned respite stay at Martin House Hospice has been cancelled, for fear that Harry could pass the virus on to those who have not had chicken pox, so that's a shame.
Today we have taken both boys up to the tarn at yeadon, for the first time in a long while. It's the first time that Callum has taken his bike with stabilisers. It was great seeing both boys cycle off. I can't think of a more idyllic past time as a child, getting outside on bikes. Harry is a very competent rider for a 5 year old and Callum has mastered his breaks now too! Just want these good times to never end. It was so worth Harry having this radiotherapy as he is doing amazingly!
Our holiday to Bournemouth is looking tangible now! Yippee! I'm planning on a day trip to the Isle of Wight to see the needles, fill tacky glass shapes with the natural coloured sand and let my boys experience a day out that I had as a child. Think I am the more giddy one!

Saturday, 20 July 2013

Saturday 20 th July

Harry awoke in a fab mood thurs 11 th July. Since there were lots of bugs at school going round, we decided to skip school and head for The Yorkshire Wildlife Park, near Doncaster. The sun shone and within us too! It was a fabulous day! Really recommend a visit there. The enclosures are big and for the first time the boys saw zebras, camels, baboons, lions, tigers, zebras plus other animals! They were very excited. There are 3 enclosures whereby you can walk through them and get really close to the animals. There was one with little monkeys and another with wallabies. The boys adored the wallabies being able to hand feed them, stroke them and even hug them! Both boys love animals! They keep asking for a pet and I keep putting it off, but we will probably get guinea pigs for Harry for his birthday in September. I am actually beginning to think he may make 12 th sept and be well enough to celebrate and at home. Last year he was in hospital attached to about 5 machines!
So Thursday and then Friday were good days, so we made plans for Saturday, that is where it went wrong! Harry awoke feeling poorly, he was sick, then went back to bed for a while. That didn't make him better! He continued to vomit several times. In the afternoon when he was immediately vomiting following a drink of water, I knew we would end up in hospital soon with him being dehydrated. I spoke to the on call McMillan nurse and asked if Harry could have an IV anti sickness drug administered at home as this worked well the week before, when at Martin House. Thankfully, by 3 pm Harry had his port accessed and the drug administered and no hospital was necessary. The McMillan nurse thought it was still side effects of the radiotherapy causing Harry's sickness. Thankfully the drug worked. harry then slept till 6.30pm, awaking for a couple of hours then going back to bed for the night. I know how poorly he got last September after radiotherapy so I am keen to get services in to prevent Harry getting in quite the state he was then. I really didn't know how to manage Harry last year and neither were services on offer at home in the way they are now. We had weekly overnight stays at LGI to try and manage his sickness, these failed and he lost an immense amount of weight and then ended up in hospital for 3 weeks. Now Harry is palliative we can get nurses quickly to our home and like on Saturday can administer IV anti sickness drugs. This is great and avoided Harry needing to be hospitalised, but why we couldn't get that service whilst Harry was on treatment last year, we had very minimal nursing support at home. I do feel that we were let down. The lack of support led us to feeling very scared and worried when managing Harry at home, when he was so sick.
On Saturday, we had made plans to visit Paul's parents and have a BBQ. Paul took Callum over, as he was so excited about going and seeing his little friend Olivia! Grandad had the paddling pool out and a new water slide and Callum had a great time. This enabled Harry to have a quiet time and recuperate, so come Sunday he was in great shape! We too headed to Paul's parents and had a lovely day, fun in the sun!
Harry had the needle left in his port over the weekend in case more anti sickness meds were needed, thankfully they weren't, so a community nurse came Monday afternoon to take the needle out. Whilst she was there I had a discussion about reducing Harry's level of fentanyl patch, since the radiotherapy has reduced his pain considerable. The nurse said if Harry seemed over lethargic then that meant the patch was too much. When she visited Harry was full of beans, so no signs if tiredness! However, having changed Harry's patch Monday eve, to a brand new one, we had another bad day Tuesday. Harry awoke at 8 am, but was so sleepy, eyes closing whilst having breakfast. He refused to go back to bed and in between his eyes closing, he was in such a foul, agitated mood. I finally got him to sleep again at 11 am and he slept till 4pm. He missed school and meals. Having had 2 such good days then this bad day, it made me think about the past week and I realised that their was a correlation to Harry's bad days and these followed the change over day if his fentanyl patch. The day after a new one was administered he was very tired, but the dose must even itself out after 24 hours, giving Harry 2 good days out of the 3 the patch is in on for.
I consulted with our McMillan nurse about reducing the fentanyl patch. Following discussions with the doctor at Martin House, we got the go ahead to reduce Harry's fentanyl patch when we changed it again. As predicted Harry had a good day on Wednesday and went to school for the afternoon. Then Thursday, I changed the patch at lunchtime, so the effects of the new patch could commence early eve and not interfere with Friday. We reduced the dose slightly as discussed. Come Thursday afternoon Harry was getting agitated with his friends whom we met in the park and I knew this was the effects of the patch kicking in, he fell asleep in his tea, but at least awoke Friday in a good mood, alert and able to enjoy the day. He had a great day!
So here we are on Saturday. Harry has a party at Wacky warehouse and later we have friends staying the night. The weather is gonna be a bit cooler but still no rain so a BBQ is planned for tea.
We do so hope we can stop at least for now these up and down days. It would be so immensely tremendous if we can have at least a few good weeks and we get to go on holiday.
The past 6 weeks has been very hard. We know the cancer cells zapped in Harry's leg will grow again and we don't know what pain the cells in his spine are causing, thus the fentanyl patch has only been marginally reduced, but we all deserve a little respite and some fun again!

Wednesday, 10 July 2013

Wed 10 th July 2013 - a mixed bag

Well after my last blogg Harry had a fabulous day last Wednesday, non stop from 7am till 7 on. However, for each good day we then have a bad one!
Really Harry has been very intermittent with vomiting (side effect from the radiotherapy) and on Sunday he spiked a temperature of 40 degrees C, he couldn't wee, was very lethargic, sleeping all day, could hardly focus his eyes and frequently vomiting. I rang the oncall McMillan nurse who suggested we got Harry to ward 31. However I requested to go to Martin house instead. There was a bed and we headed there for mid afternoon. Callum went to a friends house as he had an important birthday party to attend!
Martin house assessed Harry and it wasn't clear if they would be able to meet his needs if intravenous antibiotics were to be needed, but they were happy to keep him for assessment overnight. The on call community nurse was able to visit Harry at Martin house and fit his wiggly into his port to access it for his bloods. He had blood cultures taken to be tested to see if Harry has an infection, he had his bloods taken too, to see what the scores on the doors were. Harry was also able to be administered intravenous anti sickness medication as he couldn't keep the oral medication down.
Having had a very worrying Sunday, Harry then awoke Monday very bright and alert!
Being in Martin house was definately the right place to be as, as soon as Harry heard that there were animals from 'Mary's farm' visiting he couldn't wait to get up! Such a difference to the hospital setting whereby Harry would have been isolated to one room, he would have taken on that patient role and I am certain he would not have had the good day he did on Monday.
You see being in Martin house means the whole family and friends can be included. On Monday afternoon Kate brought Fin and Callum to visit. Being such nice weather, the paddling pool was out and all 3 boys donned their swimming costumes and were able to play is if they were at home. Daddy visited too as did harry's friend James and his mummy And they stayed for tea.
Harry's blood results indicated that his platelets have dipped a bit as has his Haemoglobin. It was decided that Harry would benefit from a blood transfusion, so this was set up for Tuesday at LGI. It is probably the radiotherapy that has affected his blood scores, but equally it could be cancer cells lurking in his bone marrow. A few weeks wait will indicate which.
Since Harry had, had a fab day Monday we decided to return home after LGI On Tues.
However, being at home wasn't the reunion we had hoped. Harry was incredibly tired tues afternoon. He fell asleep in the hospital and on the way home. Once home he refused to go to bed. However, sat In The dining room with his eyes frequently closing and when they weren't he was in quite a state, nobody could do anything right for him. It is horrible to witness and it is at these times when I know its the medication giving Harry a temporary personality transplant, but equally hard to tolerate and bare. We have more medication prescribed to try and take the edge off Harry when like this, so having discussed yesterday that perhaps I should start administering this, I did so. Harry calmed down for a short while, but was then too sleepy to eat tea. He also vomited again. Along with recent diarrhoea, Harry has lost nearly half a stone in weight.
I found out yesterday that the one shot of radiotherapy that he had, was quite a strong dose. I didn't know this. Therefore it is not surprising he is still experiencing the side effects. He does seem to react badly to radiotherapy.
His mobility you will be pleased to know is so much better and pain is currently minimal, we just need these side effects to pass and god I hope we have some good days.
The sun is shining, but for us it is not.
Harry's consultant did say that he could have more radiotherapy on his spine when that hotspot of cancer is bothering him. However, we need to get him back on track after the last lot of radiotherapy. Harry's not a car that can continually be fixed. I am ever mindful of treatment versus side effects.
Today Harry has been a bit zombified due to this new medication. It's a fine line between over medicating him and dealing with him being agitated. We are to try this new medication for a few days and see how Harry fares.
He did brighten up towards the latter end of today, when a friend from Scotland visited. When Harry is in this 'zomby' state he struggles to take information in. School is out and I guess we find it hard having him at home all day with respite still very minimal.
Really we are struggling with our own emotions very much at present, therefore we are really delving into our inner selves to gain the strength to manage Harry too. Callum just manages to get a look in too! Since Harry goes to sleep very quickly I like to to take the chance to spend time with Callum at bedtime. Our special story time. Callum is growing up so fast we are nearly missing his rapid development. Nursery is such a brilliant place for Callum to be 3 days a week. He is so settled there and they are like one big family, thus giving Callum that security he needs all round at present, cos this is hard for him too.
Martin house provides us with a safe haven, where we feel supported and protected. Whilst there I feel like we can manage, but once home I am not so sure. Our situation reminds me of the many older people I have assessed who have had emergency stays in care homes and want to stay their permanently, but need the necessary funding to do so. Via being in care, the care needs of a person can appear minimal as it is the actual fact of being in a supported setting that meets that persons needs. Therefore to assess there, the person appears to manage. Remove that setting and assess in the person's own home all the cracks and difficulties emerge very quickly.
I feel that is us!
However, we will see what tomorrow brings. I wake up on edge each day wondering if its a good or bad day. Please let it be a good day tomorrow as the sun is gonna shine, please let it shine within us all too!

Tuesday, 2 July 2013

Tuesday 2nd July

Well Harry had his shot of radiotherapy last thurs. He was having a bad day and so it confirmed the need to try and pursue some pain relief for him.
Harry awoke early Thursday morning and was shattered thurs afternoon, but he managed to lie still and be very good whilst he had the radiotherapy on his left side of his pelvis and upper left leg. Harry still has cancer hotspots that we know of in his spine and legs that haven't been zapped, so we know radiotherapy is only going to be a temporary help to him, if at all.
On Friday Harry felt the side effects of the radiotherapy and was sick, despite the anti sickness medications, he was in more pain as expected and generally very agitated.
I did feel guilty about putting him through the radiotherapy and I guess also strengthened my view point on not chasing treatments further afield.
On Saturday he awoke a different child and we headed to Scarborough for the armed forces day. Arriving a little late, we still managed to see the red arrows display and the Battle of Britain memorial fly past, which consisted of a spitfire, Lancaster bomber and a hurricane plane. We sat on the beach to watch the planes and the boys enjoyed digging in the sand. Harry was wheeled about in his major McClaren buggy on loan to us, but was in Good spirits.
He had a fabulous day Sunday, actually running about, so we get our hopes up for more good days.
Monday wasn't good day and we then feel very down as a result. Harry felt very sick in the morning and threw up at lunchtime. We had organised to plant a tree on the chevin with some of his friends in the afternoon. The idea being that it will be a special place for people to go and remember Harry!
Harry did brighten for the afternoon, but was agitated at times and in pain.
I felt my heart break at one point when he was trying to keep up with his friends who were running and he was left behind hobbling along. I picked him up and carried him.
Recently I have really begun to actually realise that Harry is dying. He has lost weight, looks pale and can go from hot to cold very quickly (a side effect of the disease). We feel our hearts are breaking, watching our beloved son crumble before our eyes.
Having thought that the disease is consuming Harry I had a welcome surprise when I returned home from shopping at lunchtime - a bright, cheery Harry, so he went to school this afternoon and had a fab time. He was in a great mood and not in pain when he returned home too.
Harry's smile warms everyone's hearts and was a very welcome sight, as was Harry and Callum having such fun together this evening.
I don't know what tomorrow will bring. I hope the radiotherapy has kicked in and can give Harry some relief from pain for a while and we can have more smiles.

I am posting a link to a fundraising page. Ian Kellar the dad of Seth, Harry's best friend is undertaking a Gruelling bike ride. He is going to cycle 1400 km from London - Edinburgh - London in under 5 days! That's almost constant cycling needed to achieve this! He has chosen the charities the Neuroblastoma society and the MPS society.

The Neuroblastoma society does research into Neuroblastoma and Harry really wants more to be found out as to why he got this type of cancer and how to treat it.

The MPS society is in relation to Harry's friend Sam in his class at school. Sam has a very rare genetic condition called Morquio Syndrome. It is a type of Mucopolysaccharidosis, or MPS, a group of metabolic diseases that cause progressive and incurable physical, and often mental disability and in the most serious types of MPS often lead to death in childhood.For Sam - the effects are just physical thankfully.

Please take a look at the page and give if you are able and if not, via reading this we are at least raising awareness of these 2 rare diseases.

Thank you