Our Pal - Jacob H

Story written 2005

Jacob was diagnosed with ALL on 13th April 2005. He had been off colour for a few days and it was quickly diagnosed after a blood test. We had an initial 10 day stay in hospital and he started 3yrs of treatment after 6 days. By day 8 he was in remission which was more than we could ever have hoped for. He was however rather poorly for about 5 weeks and put on 11lbs in weight because of the steroids he had to take.

At present he is in interim maintenance, which is quite an ‘easy’ time and he has even managed to do sessions at playgroup as his blood counts were good. In just under a month he will start his first intensive treatment block and we are nervous as we do not know how he will be and how the chemo will affect him and if he’ll lose his hair or not.

As he is only 3, Jacob does not understand the ins & outs of his illness, but he knows he is unwell and has to take daily medicine (which he does with no moans). He also has a Hickman line(aka Mr Wiggly) for his bloods to be taken through and medicine to be administered. He is fantastic about this and the only problem we have over all this is when the dressings need changing – he hates it. However, he is quite proud of Wiggly and shows him off to unsuspecting people now & again!

We try to keep life as normal as possible for Jacob and treat him as we always have. Sometimes he is unable to go into public places or see friends as his blood counts are low, but he has his little sister to play with and luckily they get on well. He’s a brave little boy and a total hero in a lot of people’s eyes.

Update 11th July 2008

So, it’s all finished. Well, kind of! Jacob still needs to take his septrim for another 3 months and we still have monthly check ups at the hospital, but in essence it is all over. To highlight the point, we had to take Jacob to A&E a couple of weeks ago as he hurt his ankle. No fast track into a room this time, we had to wait with the rest of the rabble – we were treated normally!

We had a lovely family party on the 14th June and we all witnessed Jacob take his last dose of 6MP – he and I pushed the plunger on the syringe together. Of course I got emotional and wanted to hug him, but he ran straight back onto the bouncy castle!

It’s been a long journey, although I still remember the first day as if it were yesterday. I hope and pray that this is the end of it all, but I know that if it’s not, we’ll just do it all again – whatever it takes. Sadly, Henry’s stem cells were not a match, but I am confident that we wouldn’t have ever needed them anyway. I am hopeful they can be used for research or even a donor bank. I am waiting to hear from the blood service on that.

I feel that Jacob should now go to the moved on section. He and Louise have been so lucky with all the postie they have received over the years, but I feel now is a good time to move on. I hope I can still send the odd update though.

Thank you to everyone that has ever sent a smile, a postcard, a letter, a gift. Each one was met with a smile. People are so kind; one of the positives of dealing with childhood cancer is the realisation that human kindness still exists. And it is much appreciated, from all of us.

Update 4th June 2008

Jacob is really well, and at the time of writing this, has just 11 days of treatment left! D Day is the 14th June. He had his last vincristine nearly 2 weeks ago, followed by his last course of steroids (hurray!). Today is his last LP. Suddenly it all seems to be upon us so quickly and it’s a very strange feeling. We are having a family party on the 14th, the bouncy castle is booked and the fireworks bought! We plan to celebrate in a big way. In some ways it’s an anticlimax as there will still be septrim to give and appointments to attend, but no more actual chemo, what a huge thing! Jacob finally has a wobbly tooth at the grand age of 6 and a half! He is excited today as he can finally answer yes to ‘any wobbly teeth?’ that the anesthetist always asks him!

He, Louise and Henry have had some lovely things through the post, thank you to everyone. Kate, the dodgy jokes are a big hit and they dissolve into giggles every time they tell them! Derek the dog sent a lovely letter yesterday, with origami which Louise is amazed by! The Hulk was taken to bed to cuddle!

Update 9th April 2008

Jacob has a new baby brother! Henry James was born on 16th March weighing 8lb 13oz, exactly the same as his big brother! It was a smooth and quick labour and the stem cells were successfully collected by our lovely midwife who was terrified she would muck it up! Hopefully we will never need them, but they are good to have. Jacob and Louise are both very impressed with Henry and are being very good with him.

Jacob had vincristine 2 weeks ago and it was fine, but unfortunately his trusty vein that never lets him down has packed up! We have to use the other hand now. So, we came out thinking how wonderful it was that he only has 2 more lots to go and thinking we were on a clear home stretch and then he spikes a temperature on Monday (1st day of Easter holidays) and he has been on the ward since then. Not sure what we are dealing with yet, as we’re waiting for cultures to come back. There is a slight crackle on his chest and he has sore looking ears. He was pretty poorly for a couple of days, but it much improved today.

He and Lou continue to enjoy all the post they receive and they, and I, really appreciate it.

Update 4th March 2008

Thank you everyone for your continued support. Both kids get so excited when the post lady comes!

Jacob continues to do well; in fact he has done fantastically well. He had vincristine last Thursday; we think there are only 4 more to go now, an amazing thought!

They are very excited about the baby’s imminent arrival, it’s very hard not to be able to give them an actual date, but they know it is soon! I hope it is very soon!

Update 2nd February 2008

I didn’t seem to get a chance to update in January, as for a month that usually drags, I don’t know where it went! Firstly, a huge thank you for all the Christmas gifts the children received, as well as all the cards and letters. Louise adored the cards from the reindeer and got so excited every time one arrived! We had a lovely Christmas – tiring, but lovely.

Jacob did spend 3 nights on the ward in December with a high temperature and what we think was a virus, so he had an extended Christmas break from school! He also seems to suffer more after each vincristine now, so has had a few days off with that too. He’s doing well though, and is generally in fine form!

So now we’re in 2008, a huge year for us! A new baby in the spring, and then in June, what we’ve been striving towards – the end of treatment. We greeted the New Year with a mixture of nerves, excitement, emotion and anticipation. One thing is for sure, we will keep smiling.

Update 30th November 2007

Jacob continues to be well; it really is hard to believe all he has been through sometimes which is the best way to be we think! He and Louise are excited about the baby, although it’s hard to convey the time scale to them and that there’s still 4 months to go! Jacob is asking lots of questions about it too, some are a little involved, I may have to get a book!!

He has had some birthday gifts/cards through the post, although obviously has not opened them yet, he’s waiting until Sunday, but thanks to the senders in advance! He’s also had the first flurry of Christmas cards, where has this year gone?

It’s hard to believe that 6 yrs ago we were awaiting the arrival of our first child, and he was already one day late. He only made us wait 2 more days though! What a lot he has had to endure in those short years, but what a boy eh!? I knew he was one in a million the first time I held him; he’s proved that over and over.

Update 10th November 2007

Jacob is really well. He is loving school and seems to much prefer Year 1 to reception; I think he enjoys the ‘proper’ work! He is getting loads of stickers on his star chart there and had a celebration service last week for his hard work on a story he wrote. I know that any parent would be proud to watch their child get an award, but sitting in the school hall and knowing what he has been through, make it an even more special moment.

He had vincristine this week, so we are currently enjoying the joys of steroids! But the good news is his appointments for vincristine fall just right to avoid his Birthday next month, and Christmas too – hurray! His treatment certainly seems to be going to plan, and we’re lucky that we have only needed to go to hospital for scheduled appointments for a good few months now.

Thank you for all the post this last month, mostly Halloween themed which was met with much excitement!

Update 4th October 2007

Jacob is very well. He has settled right back into school and bar a cold, has been in good health. He has his next vincristine shot next week and then an LP 2 weeks after that. Oh, and we got an end date – 14th June 2008. Wow!

Thank you Julie for the Paradise Park pencil and the letter. Thanks to Karen, your cards still make the kids smile. Thank you to the ‘well wisher’ for the stamp collection pack and sparkle pencils, both have been a huge hit.

Update 11th September 2007

Sorry for the lack of updates lately, the summer holidays were a bit mad and went far too quickly! Jacob is very well. We managed to avoid any unscheduled hospital trips throughout the summer, so that was a huge bonus. We had a lovely holiday in N Devon and it was lovely to see Jacob in the sea and swimming pool, something he couldn’t do last year. He is a bit of a surfer dude and enjoyed body boarding!

He has gone back to school into Year 1 and has that ‘I’m not the littlest anymore’ swagger! He’s really enjoying it. Louise is back at playgroup and is enjoying that too. It was lovely to see them playing over the summer, they get on so well.

Jacob’s dad ran the Bristol half marathon on Sunday and we are all so proud of him. He ran in aid of CLIC (www.justgiving.com/mattyhicks).

Thank you for all the gifts and postcards, each one is still so very much appreciated.

Oh, and one last little bit of news. All being well, Jacob and Louise will have a new brother or sister next March. They are very excited… for the moment!!

Update 1st August 2007

Jacob continues to do well. He has now finished his reception year at school which we are so proud of. He had his ‘report’ and has done really well. He only missed about 10 days through illness, so that far exceeded our expectations! He is now on summer holidays along with his sister Louise, so we have a lot of fun (!?) to look forward to! They have been sent some fantastic activity books and activities as posty though, so at least we have things to fill the time! Thank you to Karen, the football wordsearch was a huge hit; it kept Jacob busy for ages! He has also loved looking at the different stamps from around the world! Jacob has received some fantastic goodies this month, as has Louise, so thank you to everyone who is kind enough to think of us. My PC has been a bit poorly, and I have lost Ms Marcene’s email address, please could you mail me Ms Marcene?

Many thanks to everyone for your continued support.

Update 4th June 2007

Jacob spent his half term in hospital! He spiked a temperature on the Monday and we were allowed out on Friday. We think it was viral, but they kept spiking, so they wanted to make sure. He was great at having the canula put in and it lasted all week which was great. I’ve kept him off school today, and will let him go back once I know his bloods have bounced back.

He is really enjoying football, but sadly, he missed football camp in half term. I’m sure there’ll be other chances though. His little sister Louise was sad he was not around, I think it’s getting harder on her the older she gets.

Other than that blip, Jacob is just fine. A real typical 5 year old boy!!

Update 3rd May 2007

April saw 48 hours on the ward with a high temperature. Our first stay in 6 months so can’t be bad! It came a week before the 2 year anniversary of Jacob’s diagnosis, and it almost seemed apt. Just a little poke – a gentle reminder that we’re still on this journey.

Jacob was fine within a couple of hours of arriving at the hospital, of course, so it was 48 hours of keeping him amused! His bloods dipped and he was off oral chemo for a couple of weeks, but he’s been on 100% since January, so not too bad. He’s back on it now.

He was fantastic with his last vincristine shot; he was so good with the canula. And then yesterday he had his LP and he chose the canula over the mask (as he doesn’t like the taste of the mask!) and again, he was as good as gold. We’re so proud of him.

So a funny month, but Jacob is fit & well. He starts football club later today and is *so* excited!

Update 1st April 2007

Jacob is still doing well. His bloods have been consistently high since 12th Jan now, so I am expecting them to up his dose of 6MP. He was presented with an award in his school service last week for hard work; I was very proud and it was lovely to watch. We had a bit of an odd week as Jacob’s dad’s car was stolen from our driveway on Tuesday and a window was smashed on my car. Annoying as it is, we both know it’s not the end of the world, serious illness gives a very clear perception on life!

But, to make up for that, exciting news! We got a puppy yesterday and she is called Maggie! We’ve been visiting her since she was 5 days old, and she is now 8 weeks. She’s a black working cocker spaniel and the kids are besotted, as are we – she’s very cute!!

Thank you to Karen for the cat cards, both kids think they are hilarious and they love hearing about your exploits, I think you are fantastic for doing it so regularly. And Julie B too, your cards are always appreciated!

Update 8th February 2007

Jacob is doing great. He is looking great and feeling great. He has been so grown up with all his GA, thumb pricks and butterfly canulas. He does them all with no fuss at all now and I don’t even have to go into school when the CLIC nurse comes now, he does it all on his own. Not bad for a 5 year old! We are all immensely proud of him.

Thank you for all the cards, notes and gifts that people send to both Jacob & Louise, they are all met with a big smile.

Update 1st December 2006

Jacob has missed just over a week of school due to low bloods, but he has gone back this week. He spent a night in hospital too, with a temperature spike, but we were lucky to escape in less than 24hrs! He had his vincristine shot yesterday and the steroids have already kicked in! It’s his Birthday tomorrow, and I doubt anyone else will get a look in with his cake!!! Thank you for all the gifts that have arrived ready for the big day, they are all hidden under my bed!!

Merry Christmas everyone!

Update 4th November 2006

Jacob continues to do well without wiggly. His bloods have been good for 2 straight months now, which of course means he has managed 100% maintenance for all that time, which is good. He is being very brave for the thumb pricks and canulas he has to endure.

Thank you for all the Halloween goodies and the CDs for Louise. The parcel from America was fab, the Scooby stickers and stapers went down a treat.

Update 5th October 2006

Jacob is doing really well. I think the removal of his wiggly was a blessing in disguise. He is coping well with thumb pricks and canulas and his bloods have been sky high and keeping that way. He is like a new little boy, so much more confident and best of all, we can all go swimming which we all love.

Thank you as ever for all the post. Louise has been really excited to receive mail too; she loves to rip open envelopes!

Update 31st August 2006

Jacob came out of hospital on Thursday – hurray! Wiggly had to go in the end, but he’ll get a new one soon.

Update 13th July 2006

Jacob broke his elbow yesterday; he stood on top of and fell off of one of those tiny toddler slides. He was not a happy chappy during the exam, x-ray or plastering, but is fine now and doesn’t seem to be in pain and is adapting to being left handed already.

So, we got to see a whole new department at the hospital, it made a bit of a change!

Update 6th July 2006

Jacob ended up back in hospital ‘again’ last week for 2 nights with another high temperature, so lots more antibiotics were needed. It had to be one of the hardest stays for me; there were lots of newly diagnosed children which is very distressing. Then I got ill too and ran a fever which knocked me for six.

His bloods miraculously came up though. He has re-started on the chemo and he has been back at playgroup this week.

Update 18th June 2006

Not quite the holiday we planned.

We got Jacob out of Bristol children’s hospital on Saturday and set off on holiday on Monday at about 11am. By 2pm he was settled into a ward in Barnstaple hospital as he spiked a temperature and was unwell on the way down.

So, he ended up in there until late Wednesday evening. We had to take him in Thursday and Friday for IV antibiotics too, each one taking about 2 hours.

We were meant to come home Friday, but booked into a Travel Inn that night to extend it a bit.

Update 9th June 2006

Jacob’s been on the ward since yesterday morning after he spiked a high temperature. He hadn’t been quite right for a few days and as we are going on holiday next week to Devon, we wanted to get it sorted.