Reflecting on 3+ years of chemotherapy plus giveaway

As I finally begin to count down the very last week of son1’s chemotherapy, I’ve been reflecting back over all the necessary medical nasties that he has had to endure over the last 3+ years. The most traumatic for him was the psychological impact of repeated failures on cannula insertion. Poor boy was like a pin cushion and he still had to go through this occasionally after his port implant, if multiple drugs needed to be administered intravenously at the same time. He developed a phobia against everyone who worked at the hospital, be they doctor, nurse or even cleaner, as he associated them all with wanting to hurt him.

My cheeky chap now sporting the latest fashion trend – wear a cushion on your head!

Whilst at the hospital on Monday, we went to collect his latest Beads of Courage from the play specialist. But as usual he refused to go in the playroom. I had to get them for him. Although a fantastic room for the children, it has too many negative associations of being attached to a drip when there as an in-patient for him.

He will shortly be going on a waiting list to have his port removed, probably in the autumn. And although this is a huge bonus in terms of less risk of possible infection, plus he will be able to start participating in contact sports, I do worry how he will cope with needles in the future, especially as I know that all his vaccinations since babyhood need to be repeated next year.

And he does amazingly well with swallowing pills. I know I couldn’t swallow a pill at his age, but he soon worked out that the liquid medication was much worse.  On average he now takes about 40 pills a week and he is so looking forward to that reducing to 4 pills in a week’s time once chemotherapy finishes.

When he needed his first blood transfusion, we discovered that he is allergic to platelets, so the poor poppet was itching away whilst waiting for anti-histamine to take effect.

Brotherly cuddles back in August 2013 when son1 was just starting to lose his hair

Also there are all the side effects he has to cope with. Hair loss is the one that everyone else saw. When he was hairless, strangers would stop me in the street and ask how he was doing. Thank you so much for your concern. It was very touching. He hates having his hair cut now, again psychological. But as a mum, I’ve seen all the other side effects – pain, sickness, constipation, loss of appetite, over-eating, mood swings and lack of concentration. Of course we were offered more medication like strong painkillers, anti-sickness pills and a vile tasting Movicol laxative drink.

Life will certainly be simpler once I can buy over-the-counter remedies for him without having to consult with the hospital as to what is suitable or not for everyday ailments like hayfever and veruccas. The same applies to some foods. If it is a bio yogurt, back on the supermarket shelf it currently goes.

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The first thing to throw out will be the big box of Movicol sachets. I’m sure when next needed we can find something more pleasant, if tummy massage doesn’t do the trick.

Perhaps Docusol Paediatric Solution which is indicated for the effective and gentle relief of constipation in children and babies over six months.  It is a strawberry flavoured liquid oral solution containing docusate sodium.  Docusate sodium acts as a dual action constipation treatment that helps to makes stools softer and easier to pass by increasing absorption of water and fats and also acts as a gentle stimulant.

I did giggle when I watched the Docusol ‘Make a Nappy Happy’ campaign. Take a look at their fun video.

Docusol Paediatric Solution is available in 125ml bottles, currently retailing at £7.99 from pharmacies. It is reputed to get to work within one to three days.

And I’m hosting a rafflecopter competition to giveaway a baby travel changing mat courtesy of Docusol to 2 lucky winners.

a Rafflecopter giveaway – Please click on the link to enter.

And you may see my other giveaways here.

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Disclosure.  Although I am hosting this giveaway, I have not received any products.  All opinions are my own.

The Christmas that didn’t go to plan – part2

For those of you who didn’t see my initial post last Saturday, son1 went into hospital on Boxing Day. His temperature had breached the 38 degree limit when he has to go to hospital, due to his increased vulnerability to infections whilst undergoing chemotherapy. And most of the Christmas presents were still under the tree at home waiting to be opened.

So after sleeping at the hospital with son1 on Friday night, late Saturday afternoon I swapped over with my other half, in order to also spend some time with son2. But I was awoken at about 2:30am by son2 being sick in bed. Whilst cleaning up, I received a text from my other half saying he had been sick too. Uh-oh. Looked like they both had the same bug, which I really hoped son1 was not going to get. I had barely got son2 back into a clean bed before he was sick again, luckily in the loo this time. I spoke to my other half and agreed I would come back to the hospital asap to swap over with him. So once I had finished cleaning up and got the washing machine on, I quickly packed a bag. A slight delay as son2 was sick for the third time, just as we were about to leave. So he was bundled in the car, holding a bowl just in case and we drove back to the hospital. I texted my other half on arrival and we swapped over in the car-park, in order to prevent son2 from entering the premises.

Son1 was still asleep as I crept into his room, but was very surprised to see me there when he woke up the next morning. I explained what had happened overnight and checked that he was feeling okay. Yes he said. But no, he too was sick before 7:30am. The night-time swap had been to no avail. And he was slightly sick again a couple of hours later. Meanwhile I was washing my hands very frequently, thinking what happens if I get this bug.

From speaking to my other half on Sunday, I found that he had been sick a second time after he got home, but poor son2 must have been sick about 8 times in total. They were having to look after themselves as best as they could. Then just to add to everything, son1’s temperature spiked above 38 degrees again around 6pm on Sunday evening, which meant that the 48 hour countdown restarted. We were now going to be in hospital until at least Tuesday evening.

As his coughing hadn’t eased he was prescribed an inhaler on Monday morning. Then a chest x-ray later on Monday which thankfully was clear. The doctors were fairly confident that it was viral. And I was glad when the hospital restaurant reopened on Monday, as I was getting a bit fed up of toast.

When the doctors did their round on Tuesday morning, they said that nothing had been found on the blood cultures, so as long as his temperature remained okay that we would be able to come home that night. By late afternoon, son1 was getting hyper, having been cooped up in a little room for 4 days, so I was very relieved when they did the final temperature check at 6pm and it was low. He just needed a final 30 minute of IV antibiotics before his port was deaccessed.

At last we were out of the hospital and on our way home, after a short delay defrosting the windscreen. And I was pleased to see the other two were also better when we got back.

Finally Christmas could resume. The boys stayed up late opening Christmas presents and the last presents have been opened today. Although I think the last few days have caught up with me as I feel rubbish today. I’m starting a cold and I doubt I’ll succeed in staying up until midnight to welcome in 2015.

(No photography permitted on the ward).

The Christmas that didn’t go to plan

Well I always knew it was going to be a strange Christmas as I was working a 12hr shift on Christmas Day. But I hadn’t anticipated son1 getting poorly and going to hospital.

I had thought that the boys would both be awake before I left the house at 6:30am, but no all was still very quiet, even after waiting an extra 10 minutes as I knew the roads would be empty.

Earlier in the week we had discussed the possibility of my other half bringing the boys over to my workplace if it wasn’t too busy at work. But he told me on the phone that son1 was coughing and looking tired, so we decided it was best they stayed home. We did do some FaceTime, so I saw some of their excitement as they opened presents from their Santa sacks. Other present opening was to be saved until we were all together on Boxing Day morning.

Although we did have a few minutes before bedtime to open their presents from “Mummy and Daddy” – some photo magnets purchased from Picstick on the Black Friday, buy 1, get 3 free deal similar to the magnets I reviewed a few months ago plus a Match Attax album each. They had been wondering why Santa had ignored their request for Match Attax, so I explained that Santa’s magical powers meant he knew if someone else was buying them something from their lists.

Some of son1’s photo magnets

I had originally planned to delay cooking Christmas lunch until Boxing Day, but as we also had planned a trip to relatives later on Boxing Day and timing would be tight, we modified the plan. Instead my other half was going to be in charge of cooking our Christmas meal to serve after I returned from work on Christmas Day. He didn’t wish to spend most of the day in the kitchen, so he opted to buy everything preprepared from Cook. The boys don’t like roasts, so they would eat earlier.

We have occasionally purchased food from Cook before, but never a traditional Christmas meal. Part of the Christmas enjoyment for me usually is planning, preparing and serving a homemade Christmas lunch. I wasn’t very fond of the roast potatoes from Cook, but the rest of the meal was nice, although it did feel strange not to be cooking a proper Christmas lunch myself. With hindsight, it was probably a wise decision, as otherwise the food would still be lingering uncooked in the fridge now.

However by Boxing Day morning it was evident that son1’s cough was worse and his temperature was rising. So the plan was changed again. Instead of setting out later in the day for a long drive and an overnight stay, son1 and I stayed home whilst my other half and son2 left straight after breakfast to drive about a 6 hour round trip in a day.

But resting at home did not prevent son1’s temperature from breaching the 38 degree limit when he has to go to hospital, due to his increased vulnerability to infections whilst undergoing chemotherapy. So he and I headed off to the hospital late yesterday afternoon. He is now on IV antibiotics and his temperature is lower today after peaking in the night. As long as his temperature doesn’t spike again or the blood cultures show anything untoward, we should have him home again on Monday.

Meanwhile the Christmas presents are still waiting under the tree for all the family to be home together. Although one of the nurses kindly found that Santa had known son1 was coming in and had left him 2 presents there.

(No photography permitted on the ward).

A busy week

I’ve rather neglected my blog this week due to other priorities, the main factor being that I started back to work.  This was after an absence of over 6 months, since son1 was diagnosed with leukaemia on 3rd May.  But son1 is about to move into the maintenance phase of his chemotherapy on Monday, and since his medication will all be orally administered at home, we should be able to get into a more normal routine.  I’m very glad he doesn’t need to have any more lumbar punctures or intravenous drugs.  His blood counts yesterday were finally high enough for chemotherapy to recommence on Monday.  This is 2 weeks later than planned, as his blood counts had been very low following the delayed intensification phase.

It did feel strange being back at work after such a long absence, but everyone was very welcoming and wanting to know how son1 is doing.  But over 1200 emails waiting in my inbox was not quite such a welcome sight.  The boys were already fairly settled in their routine, so it didn’t seem to cause them any issues.

It has meant that we need to have quick simple evening meals, so I’ll share what I made for tea yesterday.

Sausage and noodles

Ingredients (serves 2 adults and 2 children)

1 Mattessons smoked sausage (200g)
2x 108g packets of instant noodles,
100g sweetcorn

Method

Measure out water according to noodle packet instructions into a saucepan.
Add the contents of flavour sachets and bring to the boil.
Add the noodles and cook until liquid is absorbed.
Meanwhile slice the sausage and heat in a wok.
Add the sweetcorn.
Add the noodles.
Serve and enjoy.

Sausage and noodles

And finally here’s a photo of son2 from last weekend dressed as a knight. He went to 2 parties last weekend, one of which was a knights and princesses party. And son1 is going to a party tomorrow.

Son2 made a sword at the party

Another update on my son’s treatment

Son1 has now commenced the 4th phase of his chemotherapy treatment – delayed intensification.  We always knew this was going to be a tough phase, as there is a lot of medication, but he is being a real little trooper.

He had started his new school a week and a half previously, arriving at lunchtime on the first day of term straight from the hospital, as he had ended up not being discharged until the Monday morning, when we had expected to be home the previous Friday.  He was just so keen to start at the same time as the other children, not the usual reaction from most children to school.  And he managed almost full-time attendance during those few days, which was a remarkable achievement compared to the few odd hours he managed towards the end of last term at his old school.  We were hoping being there at the start of term would give him a chance to bond with his new classmates, but he stuck steadily with his buddy who had come from his old school.

And even now suffering tiredness and nausea side-effects of the chemotherapy, he is still managing a lot of hours at school.  I was expecting him to be too poorly to manage much school until after half-term, so this is amazing.  Well done to him.

He is unable to participate in contact sports, as he has a portacath implanted in his chest, but school has designated him “coach”, so he can still join in the fun with the other boys when he is up to participating.  No standing shivering at the edge of the pitch.

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Brushing the cobwebs off my blog

I feel ready to start blogging again.  Everything was all too raw earlier.  Son1 has been in remission for over a month now, but treatment will continue for 3 years.  We are participating in a trial of higher dose medication during the summer, but less from November onwards.  This may become the standard chemotherapy treatment in a few years time, depending on the results of the trial.

I am very proud of how brave and strong son1 has been over the last few months.  He almost always has a smile on his face.  So I’ve entered him into The Face of Kinder 2013 competition, with the photo below.  If you would like to vote for him, click on this link which should take you directly to his photo.

Son1 made this hat at the hospital to wear at their summer fete

Meanwhile son2 has also been very unsettled by everything going on, but we did manage to celebrate his birthday with a super-heros party inbetween hospital visits.

My darling son

Son1 was diagnosed with leukaemia, just over 3 weeks ago, so I haven’t felt like blogging much under the current circumstances.  He is undergoing chemotherapy and has been experiencing painful side effects, particularly with eating, but this seems to be easing over the last couple of days.  He has been much happier since coming home from hospital last Sunday, although we still have frequent out-patient appointments.  And yesterday, I got the answer I needed to hear, that his chemotherapy is progressing as well as can be expected.

We have a wonderful support network from the mums at school who have been fantastic.  They are helping us in every way they can by collecting son2 from school and providing us with home-cooked meals, plus so much more.  And son1 has received so many kind gifts, that I am overwhelmed by everyone’s care.

Son1 with his Beads of Courage

My world has fallen apart!!

My darling son1 was diagnosed with leukaemia last week and has now commenced chemotherapy.  We are all absolutely devastated.  Please pray for him.