Maintenance…..!!!!!!!!

At last, we’ve made it.

As you probably know if you’ve been reading the blog, the treatment plan for Acute Lymphoblastic Leukeamia is a 5 stage process. 4 stages are intense, and take 6 months given everything goes to plan. The fifth and final stage; ‘maintenance’ takes 1.5 years in girls and 2.5 years in boys, and is a consistant barrage on Jack’s blood to ensure the leukeamia doesn’t return.

After a few false starts, caused by colds and light infections, Jack’s neutrophil count finally reached a level which we could start the maintenance stage. And we could release a sigh of relief!

There are a few different approaches to the maitenance stage, but thankfully, we drew the (relatively) easy straw. Some approaches include ‘pulses’ of steroids and vincristine (a particularly nasty chemo drug that doesn’t agree with Jack), others involve lumber punctures every 3 months or so, but Jack simply has 6MP daily and methotrexate weekly. Both are oral drugs and in relatively small amounts, and although both have made Jack sickly at various stages of past treatment we believe it should be a regime we can make work without too much impact on ‘normal’ daily live.

Other than the chemo, Jack will need regular blood tests, but these can be done by the community nurses. Once we’ve settled into a routine, we’ll only have to make the 180 round trip to Newcastle on a monthly basis for a look over with the consultant.

It all seems so easy…!

Jack enjoyed a Thomas the Tank themed birthday party earlier this month

In other news…

CLIC Sargent fund raising

We finally have all the cash donations in and we’re very pleased to say we’ve raised:

£6000!

Thank you!

We have some truly fantastic, generous and thoughtful friends and family, and there are even more amazing strangers out there that have put thier hands in thier pockets to support families just like us.

The funds you have raised will help 35 families in the days and weeks after thier initial diagnosis. It’s a feeling I remember well, a tiny little load being lifted off your shoulders that seems to be exagerated, just like every other feeling when your stuck in a hospital room with your life on it’s head!

We’ve also done a bit more fundraising since the last blog update…

Brave the Shave

As Jack was very quickly losing his hair at the end of delayed intensificaiton, Me and Matt thought it would be fun to join him in his baldness. It was hastily arranged, and not massively publicised, but we managed to raised over £200 for Macmillan cancer nurses!

Jack’s Journey doesn’t stop here!

It’s fair to say that the last 8 months or so have been pretty intense, and yet we’ve raised almost £12,000 for 3 fantastically worthy causes. I’d never have dreamed of raising that amount of money for charity, never mind whilst going through what we have!

So if we can, what can we do when things settle down a little….? Well it’s something we’ve thought about a lot recently. And its why we have some pretty big news!

We’re going legit. Although it may take some time, we’ve started talking to some people in order for Jack’s Journey to become a registered charity! Its seems pretty onerous, and will take a massive amount of effort and organsitation but we hope that we’ll be able to more directly improve the lives of other familiies just like us.

The plans aren’t fully formed, and there’ll be much to finalise, but as we seemed to have reached the end of one leg of the story, its appropriate to start the next!

 

Thank you every one for your continued support throughout 2016, and keep your eye on the blog into the new year for our bigger better plans!

We did it!

That’s it. It’s all over.

2 great days riding with 4 friends, 2 of which I’d never met prior to this weekend. And thanks to all of you, a hell of a lot of money raised for a fantastic cause.

Before I go on to tell the story of the ride, I need to say some massive thank-yous.

Firstly; Tesco Workington. They provided a huge hamper of everything we could have needed and more to keep us going over the weekend. From water, lucozade and wet wipes, to fruit, cereal bars and bandages, they made up a care-package that would keep us going for a week, never mind 2 days!

Secondly, POD Workington. They turned around a pile of t-shirts and cycling jerseys in next to no time. The jerseys took a hammering in the weather this weekend, and have since been washed and dried twice, and are holding up well.

Furthermore, to Travelodge Newcastle. I contacted them firstly via Twitter to no avail, but after speaking to the hotel manager, they very kindly provided us with 2 rooms to get showered and changed after the ride before we could all go for a meal to celebrate. Very much appreciated.

So, the Ride.

Day 1

The day started out rather over cast, and by 9.30 the house was a hive of activity. I was amazed by the amount of people who had come to see us off. It certainly got me ready for the off and after a few pictures, we headed to our first destination at Maryport surgery. The weather managed to stay dry for the first half an hour, but en-route to the second meeting spot, the heavens opened. It didn’t take much longer for our first ‘mechanical’ either, having the first puncture before leaving Workington, right outside the fire station. I was amazed that the firemen didn’t give me a good ribbing, as the rest of the gang took off and left me, ignoring my screams for assistance!

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We continued on to Whitehaven where Suzanne joined us, and a quick change of attire to account for the weather. And for the rest of the day, the rain didn’t relent much. If I had to summarise the day, WET would be sufficient! But spirits remained high and frequent refuelling stops, a quick puncture repair for Mark after the decent down Fangs brow and a long hard slog up whinlatter we’re all that slowed us down on the way to lunch in Keswick.

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Lunch probably lasted a bit too long, and we we’re all starting to get cold, but the weather didn’t care and continued to get colder and wetter. A diversion due to the flooding last year led us up a suprise climb out of Keswick, which knocked the wind out of our sails and left us searching for something extra. The drag to The Sportsman nr Penruduck for our final refuelling stop seemed the longest section without a break, but a coffee and a mars bar and we were on our way to the B&B at Lazonby. Alas, within a couple of miles of our destination for the night, Mark had his second puncture of the day, but it was slow enough to pump up, limp home, and repair over night.

We we’re made very welcome by Alison & Cliff at the Briardale Bed & Breakfast, and they ferried us down the road for a lovely meal at the Featherstone Arms, where we gorged on more food than necessary in the hope it would make the second day that little bit easier!

Day 2

The second day started well, with an in-depth discussion on the prefered method for poaching eggs, which led to a wonderful breakfast and the team in optimal mood for a day in the saddle. However, Hartside was never far from the front of our mind, probably because it was visible from the B&B!

Low cloud hid its true potential, so when the support crew arrived just before 9, we made ourselves ready and hit the road. The first hour consisted of pretty much nothing but climbing to the summit of hartside. The general conclusion was that Whinlatter the day before was harder, but the relentlessness of Hartside took its tool, and after just over an hour we took onboard coffee and marsbar cake and set off downhill for the first time that day! But what a downhill it was!

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The rolling hills after the decent we’re reasonably enjoyable, and fresh legs (in the form of Mark & Debbies colleague, Claire) kept us going, especially when climbing ou of Garrigil. However the decents we’re starting to take their tolls on Debs’ bike, and by Nenthead village she was in desperate need of new brakes. To the extent that she didn’t dare descend the 25% gradient. Unbelievably, the most opportunist bike shop owner has positioned a tiny little bike shop right at the bottom of the hill. If Deb’s had dared the descent, she’d have ended up through his front window!

More hills ensued, which wasn’t to Marks plan. Climbing out of Nenthead, he spotted the chance for a bit of a break and optimistically made a grab for the support van! Cheekily, he sailed past us, grinning from ear to ear hanging on to the van window! It didn’t last long, as he chatted to the driver and both the van and Mark flew past the junction and the C2C sign which directed us left!

We crossed into County Durham before a long, cold wet roll down into Rookhope, where we planned a spot of lunch an a stop to warm up. Although, I wish we’d carried on straight through.

We stopped at the local pub, which due to its location right next to the road, I expected to see a lot of C2C traffic, and expect a group of cyclists. The landlords seemed like a friendly bunch, well humoured and provided a cup of coffee to warm us while deciding whether to eat. Looking back however, I’m not sure what their motivation was. When chatting with them, they seemed amazed by how far we expected to get that day, the route we planned, and our optimism to get to the RVI by 6pm. It knocked my own confidence slightly, but I was sure of our route and the distance we had to cover. The rest of the group didn’t seem as confident, so in the end we decided to split up. Half of the group would jump in the van and meet Me & Matt in Consett, where we knew it was all down hill and the mileage was more certain. We’d been led to believe it was a race against time, which got an extra few mph out of our tiring legs, and although a steep climb out of Stanhope slowed us slightly, joining the Wasterly way on a quiet sunday afternoon meant we we’re flying and made good time to meet the rest of the group. It mystified us why the 2 in the pub seemed to be selling us a cock and bull story, when we’d made great time along the route I expected.

Arriving at the RVI only a couple of minutes later than expected, it was great to see so many people ready to meet us. All our support crew, Dee from CLIC Sargent, friends off the ward aswell as friends from home cheered and waved us in as we breathed a long heavy sigh of relief. But it was all too much for Mark. Not paying attention he careered into Deb, and managing to unclip, ended up laying on his side for the 3rd time in 2 days. Only our Cannan!!

We celebrated in style with a complimentary Prosecco at Zizzis and a wonderful meal and banter gathered from the last 2 days. All in all, it was a wonderful couple of days, and despite the exhaustion and pain, I’m sure we’ll all do it again at some point in the future.

Although a final figure isn’t in, the accountant (my good wife!) reckons we’ve broken £5,000 for the second event this year! If its right, its exceed expectaions by a factor of 2!

We’ll update soon with a final figure as soon as we get it, and be sure that the next post will include ideas for our next challenge to raise funds for childrens cancer charities!

 

9 Days to go!

Not long at all until we set off on our journey cross country to raise money for CLIC.

I haven’t been out on the bike since my first 100 mile ride a couple of weeks ago. The bikes has been in to Cyclewise for a service and a refresh, and it’s a good job it did. A new chain and gear cables were the order of the day after 1000 miles on pretty basic kit, so those were quickly replaced with better quality items.

Today, I went out for the first time since, and the drivetrain was making a horrendous racket! I made a detour to Cyclewise who very promptly got the bike in a stand and tweaked the derailleurs until riding was as smooth as silk. Pleasantly surprised by how fuss free it was through there when I turned up without notice, and left with a different bike!

An hour later I was amazed to see that I’d clocked up 25 mile. It felt like a trip round the block! Something must be going right as that’s 1/3^rd of the daily riding, and I’d managed it without so much as a tiny bit of suffering!

 

Inspiration in the least expected places.

A couple of days ago, CLIC Sargent featured our blog and facebook page on their “Challenge Events”  page. It looks like we got a few views thanks to it looking on the stats page. I took a look around the page, hoping for ideas for out next event or perhaps inspiration for our ride and future rides. And that’s exactly what I found, but on a scale I wasn’t expecting. The next post feature “Ride for the Child” and a 12 second video of a guy celebrating cycling to the top of Hard Knott pass. It left me intrigued, and I followed the link to his blog.

A few minutes reading about the challenge led to a couple of hours reading the whole blog. Next week, Shane (the guy behind the blog) flies to San Francisco and spends the next month riding acorss the US to New York. 3200 miles in 28 days! Riding across this tiny little country seems like a menial task in comparison. So much so that on 3 of the 28 days, he’ll ride further than our total mileage in a single day! It’s only towards the end that he plans to do less than 100 miles each day!

Ride for the Child supports not only CLIC Sargent but also Action on Hearing Loss, as Shane is profoundly deaf and requires hearing aids to hear even the slightest of sounds. The blog delves into the difficulties it brings when cycling. On the whole, his blog seems much better planned, better looking and more importantly has an easy website url, all things I need to look at improving in the future.

Shane’s blog will definitely inspire me next weekend, and it’s already got me thinking about the next event. Please go and have a look!

 

In other news, we have branded Jerseys on the way! I should have done this along time ago and been wearing them out and about on training rides, but alas, Matt has done the hardwork, and POD at Lilyhall, Workington will be providing Jerseys and printing in time for next Saturday.

I really need to get the logistics of everything sorted, the who, what, where and when, from supplies, to route specifics, support team etc so look forward (…or not!) to a post on that in the next week!

Thanks for reading!

 

 

Spoke too soon

​Somethings should not be verbalised… it’s a lesson me and Sam learned a long time ago!

Things like “it’s looks like it’ll be a nice day tomorrow” or “we won’t need to book a table for supper” or “we’ll be out of hospital by Thursday…” Sod or Murphy must be reading the blog!!

Alas, Jack’s methotrexate levels were 0.45 from his 12 oclock blood samples. If we were to get home today, they’d have to be below 0.4! So we’re tucked in for another night. Another test in the morning will have to be below 0.2, so hopefully it’ll be the same routine as the first week of methotrexate and we’ll be home by lunch time tomorrow!

Other than that it’s been a pretty uneventful day of painting, toy helicopters and filling his face with mash and spaghetti hoops!

One more night isn’t too bad, and we’re not back until 1st September to start the next block, with 3 visits in the space of a week! So updates between now and then should purely be bike related and news of sponsorship!

Good night!

Jinxed…

Another first, my first ever blog update from hospital! So don’t expect any fancy formatting or even photos, I’m just not sure I can manage it!

And the reason for this…? Well, tonight has the potential to be our last ever night on Ward 4. Of course, thinking things like this will jinx it, and now that I’ve typed it we probably won’t even get home tomorrow… but it does have the potential! And that warrants an update.

So, no more of Jack’s planned treatment involves an overnight stay. The next block involves a ECG to check his heart, theatre days and ‘magic sleeps’, and even us administering chemo from home through his port, but no more lugging bags and bags of clothes and supplies for 3 or 4 night stops.

There’s not a great deal to like about the admissions, but there’s something nice about sleeping right next to Jack while he lays in his cot sleeping soundly (and as I type this he wakes up… brilliant..! What was I saying about jinxed?) 

Perhaps it’s knowing that despite all the meds and pipes plumbed into him that he can get a goods nights rest, or just being within arms reach if he gets unsettled, there’s something that helps me sleep on this godawful fold up bed!!

In other news relevant to the blog… me and Matt completed our first ever sportive and with it our first 100 mile ride! A milestone that I’m reminded of every time I stand up at the minute! It’s given me a boost as it’s only 2 and a bit weeks until we take on Jack’s Journey! 

And speaking of Jack’s Journey, the Justgiving page seems to have gone wild since the weekend! Not sure why it is, but thank you to everyone that was either used Justgiving or sponsored us via the many sponsor forms that are doing the rounds! We reckon we’ve reached our original £2000 goal already, so we’re striving for a new goal.

September is Child Cancer Awareness Month, for which CLIC Sargent challenges supporters to raise £170 which equates to the amount given to each family on diagnosis. I’d love it if we could reach £3,400 and support another 20 families and what is undoubtedly one of the the most awful experience a parent could go through!

Thanks again for everyone’s support to date, and please keep it going! 

And still the world turns…

It would be great if it didn’t, wouldn’t it? “Hang on a minute world, can you just slow down a touch, I’ve got a child with leukaemia to look after, can you give me a 30 hour day please?!”

It’s been 3 weeks since I started writing this entry, so probably more than 5 since my last update. And lots has happened, enough that much of it won’t make this entry. But one thing that did and spurred me on to finish this post tonight…. Cake!

Cake isn’t he motivation or support we need all the time, but when a lovely neighbour drops off a lovely sponge and a dozen cookies, it reminds us that people are thinking of us, and defintely brought a smile to mine and Sam’s face! Thank you Mark & Joanna!

Since its been so long, and to keep me on track, I feel this blog may need something different…. a contents page!

1. Commuting to work
2. We have accomodation & More Riders
3. Free gear
4. Is that… Chickenpox?
5. Justgiving, £/mile & Mayfield School
6. Finally… Treatment

Rather alot to get through, but contents will give me something to aim for whilst writing the blog, aswell as something to warn you about the length of the post! Anyone that’s ever written a blog, I salute you! It takes an extraordinary amount of time to plan, write, edit and publish, much more than I expected, and as such I’m not updating as much as I thought I would, hence bigger posts when they do happen!

So, here we go!

Commuting to work

Commuting on a bike was something I’d found quite daunting, and thought it was best left to those that either a) lived much closer than I do, or b) competed in Ironman’s (Ironmen??) for fun. 23 Miles to work, a full days work followed by 23 miles home has never seemed that attractive of a proposition to drag me out of bed in a morning!

But given that I’m trying to get as many miles squeezed into a manic week already, it gave me the oppurtunity to get 46 miles in without interfereing much into a normal day. a slightly earlier alarm clock, and getting home half an hour later than usual was an easy sacrifice to get the training in!

I’ve now done nearly 300 miles commuting, and despite one very wet journey home, I’ve really enjoyed it. Rather that feeling tired when I got to work, I found it blows out the cobwebs, and I don’t mind the ride home too much either!

Accomodation & More Riders

I’ve booked the accomodation for the night of Jack’s Journey, which is less than 4 weeks away! A nice little B&B just past Penrith which has space for the bikes and is perfectly half way, and a very reasonable price. We don’t need 5*, but a comfy bed will help come Sunday!

And room for everyone that’s riding, since there is 5 of us now! Mark, who’s been along for the ride since the start has dragged in 2 colleagues, which can only be a good thing! The aero advantage sitting in behind 4 riders will mean I’ll barely have to peddle! If anyone else fancies the journey, please get in touch, although I’m not sure how many rooms the B&B has!

Now would seem the perfect oppurtunity to plug Mark’s fund raising efforts. At the new year, Mark decided to raise funds for Bloodwise by going for 12 months without a drop of alcohol! Riding to the other side of the country suddenly pales into insignificance. If you have a spare fiver, please donate through Mark’s just giving (here) and help him make it through the full 12 months! Bear in mind that this was much earlier than Jack’s diagnosis, probably before Jack had leukaemia, never mind that we’d seen the symptoms, so the fact that the charity is so closely linked is one hell of a coincidence!

Free Gear!

Matt, my brother, has also been up for the ride since day one, and we’ve been on plenty of training rides together over the last couple of months. He’s been riding about on a 10+ year old Raleigh racer which our Dad swapped for a bike he won in a competetion. It was getting him round, but not in much style!

Matt handed over his hard earned to Cyclewise @ Cockermouth for a new Cube. Carbon Fibre, Disc Brakes, all the bling bits to show me up! In return, Matt cheekily asked for sponsorship for the ride, which the guys duly did!

But on top of this, and the bit I was most chuffed about: Free Jerseys!

So massive thanks to them guys!

Is that Chickenpox?

Just over 3 weeks ago, one of our worst nightmare happened. We’d always been warned that with Jack’s negligible immune system, a virus such as chickenpox could be pretty dangerous. So any sustained contact with someone with chickenpox would have to be treated immediatley.

When playing with family friends, all was great until later that day one of the other kids started coming out in spots. Thankfully, his Mam got in touch straight away and we got jack on antivirals to boost his immune system. However, it was a pretty intense treatment! 3 weeks of medication, 5 times a day! For a virus that usually blows over with a few spots and mild fever! Anyway, thats finished now, but it did mean being in isolation for his last period of high dose chemo at RVI.

Justgiving, £/mile & Mayfield School

To update progress with fundraising, we’re doing fabulously well, so thank you very much! Accoridng to just giving page, we’re at £1,129, well over 50% of our target.

Notably, my Dad very generously donated £1 per mile that both me and Matt are riding on Jack’s Journey! That’s £274, so big thanks to Dad for that. If you we’re thinking of sponsoring us, a meager 5p per mile accounts to £6.85, a very good amount to donate! It helps massively to think that every 4 mins or so, we’re raising another small amount for the great cause!

Another significant donation we’ve had news of recently is that Mayfield School are once again supporting our cause! Another bake-sale managed to raise £214, a wonderful amount that is very greatfully recieved!

Other amounts include £200 that my Mam has raised, a potential £200 from a matchfunding scheme at work, and we’re edging ever closer to our goal!

Thanks for everyones support!

And finally…. How’s treatment going?

Jack has now completed 3 of the 4 High Dose Methatrexate sessions. The first session lasted the whole duration, Monday-Friday, but since then Jack has responded a bit quicker and in the 2nd & 3rd treatments we’ve managed to be home by Thursday evening.

The most recent stay involved a visit from Amelia, who hasn’t been over to RVI since early in Jack’s diagnosis. We used the facilities at Crawford house, and having visitors kept Jack perked up for the majority of the 2 days Amelia was with her.

Amelia enjoying her stay over at Crawford House, care of The Sick Childrens Trust

Other than quite a bit of sickness, the side effects are minimal and shortlived, and by the time we’re home, Jack’s livened up significantly, and the weeks between treatment he’s back to his usual terrorising self! Between him and Amelia, we’ve been at our wits end these last couple of weeks. Wether its the summer holidays, or having a week at home then a week at hospital, its got the kids hyper and our fuses short, so a couple of quiet days in hospital isn’t necessarily a bad thing! Monday (15th) sees the start of session 4 of 4, and we’ll no doubt start to plan Block 4: Delayed Intensification!

More on that when we know more! Hope that wasn’t as much hard work to read as it was to right, hopefully the next update will be sooner, shorter and easier to read!

An almost royal visit…

Ok, a bit of an exaggeration, but more on that later!

Last week Jack completed his first of 4 “High dose Methotrexate Protocol M” treatments.

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I think I’ve mentioned it before, but it’s a 5 day stay in hospital, permanently connected to a drip, first with 24 hours’ worth of chemotherapy, then 3 days of fluids to flush it all out! This stage was meant to start a couple of weeks ago, but due to a low neutrophil count, then a viral infection (adenovirus) it’s been pushed back and pushed back, but we eventually started last Monday (4^th July).

And it ran pretty smoothly. To the point we were nearly home a day early, Jacks response was that positive. Apart from a bit of sickness, ironically when giving his antisickness medication, the hardest part was dealing with a very active 20 month old connected to a load of drips. Jack didn’t bat an eyelid, just gets on with it. The ladies over at the RVI, the nurses and the play specialists, are very accommodating and make the stay over there as easy as possible.

Jack’s home now until Monday, 10 days off, then it starts again, given his count is sufficient. It’s a bit of upheaval, but we’re getting used to it, and grandparents have been brilliant.

However, it does mean not much opportunity to get out on the bike. I did get out last night and thoroughly enjoyed a couple of hours ride. Until my first puncture! 30 Miles in, after taking a diversion from my usual route, I hit a ‘curb’ a bit hard and my rear wheel was relieved of all its pressure! Thankfully, I had a spare tube in my saddle bag and after getting to grips with my new pump, limped home on minimal air! It did allow for some rather artistic photography, something I rarely stop for when out on the bike.

In order to get out and get miles in whilst in this phase of Jack’s Treatment, I’m going to try and cycle the commute a few times a week, starting tomorrow. I’m a bit apprehensive, not sure how long it’ll take, or how daunting the traffic will be, but it’s got to be done, at least once!

So that royal visit… Well, mayoral is more appropriate!

Last week we found out that the Mayor of Maryport, Lynda Radcliffe, had chosen Jack as her charity for the rest of her term as mayor. Not the charities that we’re raising money for, but Jack himself. We were astounded that she felt so strongly towards Jack, but she wanted to come round and see him, and have a chat with us about ‘sponsoring’ him. So this evening, Lynda paid a visit with the Times and Star for an article in the coming weeks. We discussed potential fund raising events, and what we would do with the funds. Both me and Sam feel the same in that we wouldn’t want to ‘pocket’ anything ourselves. We’ve received plenty from the charities associated with the ward and through other charities, and we want to give back. So much so, we’re planning to do 3 fund raising activities per year and hope to raise over £10,000. Given that we raised nearly £6,000 with a hastily planned cake sale and raffle, I don’t think this is unreasonable! And hopefully if we can get this blog shared far and wide, and through the justgiving page, we can achieve this.

Lynda suggested a couple of ideas, including curry nights, family days in the local community, further bigger cake sales, but I think with a bit of majoral clout, we might be able to go a bit bigger! Suggestions would be very welcome!

I’ll update shortly with how commuting goes, and please get in touch if you have any ‘new’ or ‘alternative’ fund raising ideas!

A hospital stay, but not the right hospital stay.

It’s been a while since the last blog update, and for good reason as we’ve had a busy few weeks.

Starting with Jack’s sister, Amelia’s, 4^th birthday, we had a weekend of celebrations. A party at home with Family, a party at a local soft play with school friends, then Me and Sam celebrated her birthday a few days early with a few drinks in Cockermouth. All followed by a lie in and a meal out to celebrate Father’s day.

Birthday Girl #1

Birthday Drinks

Birthday Girl #2

All of these were to preclude Jacks first planned admission, a 5 day stay to start ‘Interim Maintenance’. However, as with the rest of Jack’s treatment from now on, this treatment is “count dependant”. That is to say he can’t be neutropenic (neutrophil level > 0.75) when the treatment starts.

On Wednesday 22^nd June, we celebrated Sam’s birthday with breakfast, and set off on the 2 hour drive to Newcastle. All checked in, Jacks portacath accessed and bloods taken, before a quick play in the waiting room, we were in the RVI about 90 mins before the bloods came back.

“0.38”. Bugger. A wasted journey. Jack couldn’t start the high dose methotrexate with a neutrophil count of 0.38. We’d have to come home and wait a week before he could start treatment. In the end, the low count was partly blamed on a bit of a bug that Jack had (he’d sent he doc locally on Monday before, but it didn’t seem significant) and the oral chemotherapy he’s been having. So a 2 hour trip home was required, if only I hadn’t locked my car keys in the car boot!

Playing while we wait for the AA

Mr VW Breakdown picking the locks!

Having stopped the 6MP (Oral chemo) and given time to recover from the bug, his count should be up by the following week and ready to start…

Only he didn’t recover from the bug. Come Thursday (23^rd) Jack felt really warm, but the thermometer only read 37^oC. We’ve been told to start to worry when temps exceed 38 ^oC, and contact a doc immediately at 38.5 ^oC, so 37 ^oC was nothing really. But if there’s one thing we’ve learned with our two (Amelia included) it’s to go off instinct, and that’s something I’d tell every other parent. Numbers are all well and good (I’m an engineer, I love numbers) but how things feel is critical, and Jack didn’t feel well. By the time we got to West Cumberland, his temp was up at 38.7 ^oC, a significant fever, and intravenous antibiotics were administered immediately. Any fever is initially treated as a bacterial infection, since that’s the most dangerous for a child with ALL, so a 3 day 9 dose course of antibiotics saw is in the hospital over the weekend. Not ideal, and especially inconvenient since WCH Children & Young Persons Ward has no provision for parents or carers. No fridge, no kettle, no sitting room, and as Jack was under isolation, it gets a lonely place. The nurses are great, but it soon gets tiresome having to ask for a cuppa, never mind even being able to warm up a microwave meal!

But we could have visitors, and Amelia made the trip on Saturday and Sunday. Not to see Jack mind, only to revel in the delights of the wards costume department!

 

Not a princess dress in sight…!

We’re home now, but since his neurophil level was only 0.4 again yesterday evening, it didn’t look likely that it would up in time for Wednesday to try and start Interim Maintenance again. I spoke to Newcastle today to ask if his bloods could be checked locally before making the journey over. However; they have other plans. Instead of going over on Wednesday, we’re going to wait a week and give him a chance to get over this infection and his bloods to recover.

All the changing of plans leaves us a bit up skittled and to be honest, not knowing whether we’re coming and going. Thankfully work have been brilliant with me, and Sam’s off sick to deal with everything at home, but reworking childcare to deal with Amelia, sorting who goes where and when, and then actually remembering to do it, it’s all a bit of a memory game!

And it all means I haven’t been out on the bike in a week, but if I’m honest, I’m quite glad. Last Monday I went out a bit hard, probably a bit over confident, and ended up stretching my hamstring and barely got home. So a break was due I think. We’ll try to correct that tomorrow with an evening ride out, and a half day leave on Friday for a dentist appointment might be a good excuse to get out for a longer ride. Time will tell!

First time for everything…

… And this week was the first time for a couple of things. Neither of them particularly good!

On Sunday, we (Me and Matt, my brother) went out to ride the first couple of legs (more on that later) of Jack’s Journey as a training ride and a bit of familiarisation with the route. All was going well until around 25 miles in when, at a fork in a cycle path between Whitehaven and Rowrah, I decided to go left, and Matt; right. No great issue you might think. However, I was riding alongside Matt, on the right. We clattered into each other, and his pedal wiped out a spoke in my front wheel.

So, my first breakdown/mechanical failure since buying the new bike. Not bad really, 500 miles into training! Thankfully, Matt had a spoke tool in his saddle bag, and we hooked the now bent spoke back into the damaged hub, got a bit of tension in the spoke and slackened the front brake off a bit. I was a bit dubious how far I’d get with the repair, but we carried on to the Kirkstile Inn, had a bit of lunch, and rode home, a total of 62 miles. 37 of which on a damaged wheel!

Not for the first time, Kirkstile Inn becomes a convienient spot to stop

Popcorn chicken torilla and Loweswater gold…. well worth the 62 miles

The second first: Riding in the rain! Unbelievably, in the last 5 weeks I’ve managed upwards of 15 rides, and in over 25 hours on the saddle, not a drop of rain! Until yesterday!

Stepping out to the garage to get the bike out and the clouds looked very heavy, so I dug out my waterproof, and by the time I was clipped into the pedals, the heavens had opened. But not enough to deter me, I continued out of Flimby towards Maryport! Before I’d covered 2 miles, the weather had cleared up, and I didn’t see another drop of rain in the next 24 miles! Bizarre! But long may it continue, and hopefully the first weekend in September will be a dry one!

On the topic of 3rd-4th September, I briefly mentioned last time that I’d like to get as many people involved as possible, not only in fundraising but in the ride itself.

I thought the best way would be to chunk the ride up into a number of legs. The first milestone, Maryport Health Centre  (where concern was first expressed about Jack’s health), is only 2.0 miles away, and I thought this would be an ideal opportunity to get youngsters involved. The 2nd leg, through to West Cumberland could easily be completed by anyone comfortable on a bike without much training (at 19.0 miles).

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As can be seen above, the 3rd leg takes us to Keswick for a spot of lunch, and would be a challenge for someone who hasn’t the time to ride over 2 days in the weekend, and finally, the end of the first day takes us to Langwathby (where I need to try to find us somewhere to stay!!)

I hope that peaks some interest with some of you. If it does, I’ve approached a custom jersey company, and had a price back of £40 per jersey with “Jack’s Journey” branding, but a minimum order of 10. It would be nice to get some interest as there’s a 4 week lead time on them. And only 12 weeks to go! So please….. get intouch and get involved!

 

 

Chemotherapy at home

What with half term, kids birthday parties, barbecues, golf and, most importantly, getting out on the bike, I’ve struggled to get chance to update the blog in a while, so forgive me for the break and probably longer than usual post.

Most Importantly! Thank you, again!

Last week we received news from The Sick Children’s Trust that the “Big Choc Tea” we held raised more  funds in a single event than any other Big Choc Tea in the country! This is unbelievable! As a way of thanks, we’ve received tickets to see Charlie and the Chocolate Factory – The Musical. If I had my way, everyone that donated would be coming with us, as it was your efforts that have raised the funds!  I feel like I need to say thanks 100 more times, upwards of £5500 is incredible, and we are forever grateful (as are The Sick Children’s Trust!)

Jacks Progress

The most significant impact the chemotherapy has had on Jack to date is the pain is his joints and muscles which have stopped him walking. Although his pale complexion and thinning hair are significant for everyone else, Jacks not too bothered, but having limited his movement initially to nothing, then to crawling, it impacted his daily live dramatically.

Well, thankfully Jack’s finished the Vincristine chemotherapy which was to blame, and finally seems to have flushed it out of his system, and since the weekend is regaining his confidence on his feet and is wandering and stumbling around. It is literally like watching him walk for the first time. In fact, we’re probably more proud now than when he learnt to walk the first time.

It’s a significant step, and one of a couple of steps in the right direction since the last post. Tomorrow Jack will finish his second step of treatment; “Consolidation” which has been a series of lumber punctures with intrathecal (into the spinal fluid) chemotherapy, accompanied by oral chemotherapy at home. Although we’ve been giving medication at home, its been antibiotics, pain relief and anti-scikness drugs, this is the first lot of chematherapy we’ve been let loose with. It’s been a relatively simple stage of treatment, but means long days firstly Nil-by-mouth until 1.30pm then coming round from the general anaesthetic. But on the whole painless for all.

Having said that, we did have a hiccup in giving jack his oral chemotherapy, and learned the true value of his medicine. Waking up at 5.30am to give jack his pain relief, I opened the cupboard where all his medication is only to be greeted by a falling bottle of medicine… It turns out the 6MP bottle, which had only 1 dose taken from, felt aggrieved being locked in a cupboard with all the other insignificant everyday medications. On me opening the door, it seized its chance and made a leap for freedom… only to splatter itself all over the kitchen floor.

Being that Jack requires this daily, we tried to get a bottle locally, and even to get a bottle sent over from RVI, but alas. It would require a 4 hour drive and 1hour searching the hospital to find a replacement, in time for Friday evening and Jacks next dose. Lesson learned: look after meds, or they can’t look after Jack!

On a more pleasant note, we found out that Jack is on the “Low Risk” scale of the MRD (Minimal Residual Disease) test. This looks at the tiny amount of leukaemia left in his blood and determines how responsive the medication has been. This was great news and means stage 3 is easier.

Jack enjoying himself on Flimby Park

Speaking of stage 3, interim maintenance, we now also know the regimen that will shape the next 8 weeks. Starting on Sam’s birthday, Jack will need 4 x 5day admissions every fortnight to administer an intravenous chemotherapy. This is the high dose route of a clinical trial which Jack is on, which although will disrupt of lives significantly for a couple of months, it should mean no more lumber punctures for the rest of his treatment (as opposed to monthly lumber punctures for the next 3 years on the low dose route).

Cycling & Training

Fells, fells, fells. In an effort to prepare myself for the delights of Hartside, Nenthead and Stanhope, whilst improving my knowledge of the area I’ve lived in for the last 27+ years and not appreciated, I started the enviable task of riding the fells of the lake district. So far I can tick of 2, Whinlatter and Newlands.

Whinlatter I’ve done before, being one of the more popular routes, and one that we will have to conquour early on Jacks Journey. Apart from a short section half way up with a tight twist and a few slippy patches, its not too technical, just a case of plodding away at no great pace. Since the last post, I’ve ridden up Whinlatter twice, by myself and with Matt, with no great pain.

Newlands on the other hand…

Well, it has a lovely view. I’d love to say I got all the way to the top, but sadly I’d be lieing. I got very close, but the last segment ramped up the gradient, and I had to unclip before I came off and tumbled back down to the bottom!

A lovely ride back thanks to a piece of carrot cake and a swift half resulted in my longest ride to date, and not too far off the total mileage we’ll need to be completing on the days of Jacks journey. Getting up in the morning to do it again may be a struggle…!

Quick refreshments and water top-up at Kirkstile Inn

Jack’s Journey – The Ride

I’ve mentioned to a couple of people now my thoughts on getting others involved in the journey, the more the merrier in my opinion.

However, I’m a realist, and know that many folk, especially those not that comfortable in the saddle won’t be up to 140 miles.

Over the weekend, I’ll update the blog with a suggestion of how you can get involved… so keep an eye out!