Winning the battle

So today is the day I feel I can finally say we have won the battle. Seth is in remission and it has been confirmed that he does not need any further chemo. I am excited to hear this news, Seth is excited, the rest of the family are excited. I will raise a glass of bubbles to my son tonight (once I get back from taking the girls swimming – bloody swimming!). He has made me so proud throughout this whole process. He is a very different boy to the one that was diagnosed, but he has shown himself to be resilient, courageous and above all one of the happiest people I know – nobody is ever going to keep him down for long!

But, I have to remember, it is only the battle that we have won. The war will go on. It won’t be until 5 years has passed that Seth is considered a survivor of Burkitt’s Lymphoma. The chance of relapse is highest in the first two years and for this reason we will have three monthly scans and check ups for 24 months. Relapse is a very awful prospect, the treatment is harsher, longer and the survival rates much more scary to consider. After 2 years he will be checked every 6 months and then after 5 years it will go to a yearly check which will continue until he is an adult.  Maybe when he turns 18 I will consider the war won? I’ll let you know.

So, because there might be another battle for us, and because there will most certainly be battles for other families, some that might not be won, I want to make sure we keep on fundraising and raising awareness for all the charities that are doing so much amazing work for our children. Watch this space…

R Day

So, yesterday was ‘Results’ day. After over 3 weeks of waiting we had a meeting with Seth’s consultants to get the results of his PET scan and find out what next for Seth. I have gone through every emotion possible during the wait and I know Seth has too, so we were both looking forward to having some answers whether positive or not.

So, starting with the good news, Seth is officially in REMISSION! That means there is currently no cancer anywhere in his body. The slightly less good news is that there is not agreement amongst the specialists as to whether he needs more chemo. This is due to the very unusual way that Seth’s Lymphoma presented. So, we are still waiting. Seth’s consultant does not want to take any risks with him (and obviously neither do we), but they also do not want to administer chemo that is not required because of all the side effects now and in the future (to put this into perspective, he is unlikely to be infertile after the number of rounds he has had but his chances significantly increase with more rounds – a big decision to make about a 7 year olds future). So over the next few days they will be talking to a Dr that is heading up a European trial into the treatment for Burkitt’s to get a definitive answer. Best case is that he is finished. The worse case has now been reduced to a further two rounds of chemo.

Seth was initially upset that he wasn’t going to get the answer he wanted, but as ever he bounced back within minutes – he really does amaze me. He is pleased that it will only be two more rounds and he grilled his consultant on the drugs and also the stay in hospital and was very pleased it would only be four days for each round! So, we can all see an end now, but as of yet we don’t know if it will be May or July.

Keeping everything crossed again.

 

Advice to a Cancer Mum

Tomorrow is a milestone day. Firstly I turn 42 and secondly and more importantly it will be 4 months since Seth was diagnosed. In some ways it has seemed like the longest 4 months ever – every 24 hours that he was in Intensive Care seemed to span a month at least – and yet it also seems to have flown by as we have lurched from one round of chemo to another, from one hospital test to the next. Birthdays always make me reflective and I have spent a lot of this week looking back on the last 4 months. Then today I was on Piam Brown ward for the morning with Seth and there was a new family there with a little girl just a bit older then Seth, they looked just like we did on our first visit in January – unable to believe their child could have Cancer and scared of how they would deal with it if that was the case. I wanted to talk to the Mum and reassure her, but I also didn’t want to intrude on such a difficult family time. They were watching Seth joke with the nurses and sit and do some school work with the teachers and be his normal pickly self and I hoped it gave them some comfort that life goes on even after this awful diagnosis. A very wise lady said to me on my first few days on the Piam Brown Ward that Piam Brown is a club you never want to join but once you are in it is full of lovely people all fighting the same battle. So, incase anyone reading this is ever in the position of having that awful diagnosis, here is my advice for Mum who has just been told their child has Cancer.

1. Believe in your own strength. There is a lot of truth in the words ‘what doesn’t kill you makes you stronger’. Believe that you will be able to cope with whatever life throws at you, because you will. When you feel that your heart has been ripped out and the pain is unbearable you will find strength that you did not know you had. And, in the end, you will come out of this experience a stronger person. Just keep believing in yourself.

2. Understand that everyone deals with hard situations in their own way and that is okay. I have had to learn to let my family deal with this in their own ways and accept that however they are dealing with it is right for them and does not lessen their pain. I spent the first few weeks resenting Ivan’s coping mechanisms, his calmness in the face of awful situations, but I know now that was what he needed to do to make it through this journey and I did what I needed to do. Neither of us felt any less pain or worried any less but we had to deal with it in our own way.

3. Take up every offer of help you get. Let people help in any practical way they can. Let them cook you meals to put in the freezer. Let them look after your other children. Take them up on offers to walk the dog. Don’t worry that you will never be able to repay them, they don’t want you to, they feel helpless and they just want to feel useful.

4. Remember that how you deal with stressful situations will dictate how your child deals with them too. Try to stay positive and brave even when you don’t feel it, it will help them do the same and ultimately will make their time in hospital easier for them to deal with

5. Don’t create a monster. It is very easy to let a child that has been diagnosed with Cancer get away with murder. But, when the time in hospital finishes they have to slot back into your family and into normal routines, therefore continuing to treat them as normally as possible is really important.

6. Look after yourself too. Eating toast and drinking coffee will only get you so far. Try to remember to eat well and get some fresh air each day. Take up your friends offers to come and sit with your child so you can get outside even if it is only for 10 minutes, you will always feel stronger for it (see point 4!).

And lastly 7. This will change you forever. You will not be the same person after diagnosis, halfway through treatment or when chemo is over. In some ways, it will be for the better but in other ways you will miss the old you.

Stuck

One day I will count how many times I have used the word ‘waiting’ on this blog. I know it is a lot.

As of today we are still waiting on PET Scan results, we are still in limbo, the weekend stretches out in front of me without answers. To quote a wise 7 year old boy – ‘I need to know the results Mum, I can’t move on until I know the result so I am just stuck’.

 

The Great Old Mutual Bake Off

Today Seth was invited to judge at Charity Bake Off at Old Mutual in Southampton. A team of my lovely ex colleagues had set out to raise money for Piam Brown by organizing a Bake Off that spanned over a number of weeks, and today was the grand final. Seth had decided the theme for the final should be Lego and was very much looking forward to what everyone had come up with. He was not disappointed, all the entries were very creative, there was even one styled on the double decker sofa from the Lego Movie! Seth had to taste them all and rate them on look, taste and texture. His appetite is still not huge so after cake number five I had take over on the judging, but I think I did an ok job. Tess, unsurprisingly, managed to taste all of the cakes! Most importantly it was a hugely successful fund raiser, at the last count they have raised over £2500 for a very good cause.

When it’s not all about cancer…

This weekend was a Cancer free weekend, for me at least, and selfishly it felt really good. I was marooned (well not quite) on Brownsea Island with 19 Brownies and 4 other Leaders for our pack holiday. Forty-eight hours away from home and away from the worries of having a child with cancer. If I had been doing anything else then I would have spent the whole weekend worrying about Seth and phoning Ivan to see how he was, but the great thing about Brownie holidays is how all consuming they are. From the moment you take charge of 18 girls (1 of them was already mine!) and are trusted to look after them to the moment you hand them back you don’t have time to think of anything else. We walked, climbed tress, spotted red squirrels, played on the beach, played in the sea, skimmed stones, orienteered, built dens and sang songs constantly. They didn’t sleep much, so I didn’t sleep much, but it was still a great break. Tonight I feel exhausted, happy and of course very pleased to be back home to catch up on cuddles and tales of the weekends activities with the four that remained at home.

The PET scan

So, today was the day of the PET scan. I think Seth is working on getting a full set of scans completed during his treatment. He has had an ultrasound, several x-rays, 2 CTs, 3 MRIs, 2 Bone Scans, so today’s PET scan must complete the set?! Anyway, the reason for the scan is to hopefully tell us once and for all what is going on in the bones in his back and whether he needs further Chemo. Initially we were going to have to go to London for the scan as, although it is being done of the NHS, PET scans are actually outsourced (?!) to a private company and their policy is that anyone under eight has to be scanned under General Anaesthetic and therefore has to go to London for the procedure! Luckily Seth’s consultant was very persuasive and when she pointed out the long list of scans that he has had previously, whilst being wide awake, they relented.

First stop of the day was the Childrens Assessment Unit for a cannula to be put in. A tricky start, as it took 4 attempts to get one in and Seth was grumpy and feeling like a pin cushion by the time we left. He had cheered up though by the time we arrived in Nuclear Medicine and was very chatty with the lovely nurse that was looking after him. She explained to him what was going to happen before and during the scan and then they injected the radioactive dye into him. We had to wait an hour for the dye to take effect so we caught up on some Harry Potter (we are now on the final book – not sure what we are going to do when we finish!).

The scan was fairly straight forward, only 18 minutes compared to over an hour for an MRI, and he was beautifully still for the whole scan. As we left they spoke to us about the fact he was radioactive and would be for the next 8 hours so he needed to avoid close contact with other people. The walk out the hospital was interesting, every time someone came near him he ran away.  When we got home he put himself into isolation in our room (his thinking being that he had a TV and toilet and didn’t need anything else!) and told no one to come in.

Now we are waiting again, results should be about a week….

 

Good bloods

I have become very accustomed to bad news over the last few months, especially arounds Seth’s diagnosis and treatment, so, it is especially nice to get unexpected good news. Today I was awaiting the results from blood tests he had yesterday. I was expecting him to be neutropenic (he was at this stage on his last cycle) and in need of a blood transfusion. I had convinced myself that if he was neutropenic we would be spending all weekend in QA fighting another infection rather than at home with the family having fun.

So, when the phone call came from QA I braced myself, and as the lovely nurse on the other end read out the results I was sure I misheard her. I asked her to repeat them, they still sounded good. “Can I just double check these are yesterdays results?” I asked. She confirmed they were. I put the phone down and let out a massive whoop, Ivan thought I had gone mad. His bloods are good. Neutropenia can do one. We are going to have a good weekend…..now I am touching lots of wood and hoping I have not spoken too soon!

The new normal

It guess it is an obvious statement, but when one member of your family is diagnosed with Cancer it is like the whole family has been diagnosed with Cancer. The challenges are different for each family member but they are very real. Living with cancer becomes the new normal for everyone and you forget what normal actually looks like. You don’t even realise it is happening. Then something really simple happens and it brings home to you how ‘not normal’ life has become. This morning it was Tess. She was playing Doctors and she simply walked up to Seth with a plastic syringe and said to him ‘time to take your bloods Seth, we have to see if you are well enough to go out’. In those few seconds it made me think about what Tess has had to deal with over the last four months. Weeks and weeks with me barely at home, weekends spent in the hospital, endless hospital appointments to attend and blood tests to witness. For her this is normal, I hope for her sake (and for the other three) we can get some real normality back soon.

A good week

I think Seth has been better this week than I have seen him since before he was diagnosed. He managed 3 (short) days in school, he went to Beavers, the two of us went out on a bike ride together and he turned his bedroom into an Inventors den. So all in all a good week. Even his blood count has held well, he wasn’t Neutropenic today when the community nurse came to take his blood. I can pack the can of Dettol away for a few more days and we can enjoy the weekend as a family (keeping everything crossed as I type this).

Seth has left the building

After 7 days ‘inside’ Seth is always desperate to leave the hospital, today was no exception. The Chemo finished at 5pm and by 5:05pm he was running down the corridor heading for home. It has very much been a week of highs and lows. The highs have included building a den under his hospital bed with a friend, finishing Harry Potter and the Half Blood Prince and getting his Silver Award for school work done while in hospital. The lows have included a nasty reaction to one of the Chemo drugs resulting in a 40oC plus temperature and a collapse while in the toilet!! The lows have also included inconclusive test results that mean we still do not know how many rounds of Chemo he has left.

But, for now he is home and he is happy. The next step is a PET scan to try work out what is going on in his bones. This won’t be for 2 weeks so, apart from a trip back to Southampton on Friday for another Lumbar Puncture we might manage a couple of weeks at home (that was probably me speaking too soon….).

“Lets get this done”

‘Lets get this done” said Seth as we pull into the hospital car park for Chemotherapy round 5. His determination, acceptance and positivity never ceases to amaze me even though he knows he has seven days stuck in a hospital room and that he is going to feel pretty rubbish* throughout.

This round starts and finishes with a lumbar puncture (Chemo injected directly into the spinal fluid), so the after being checked over by the the Dr and an anaesthetist we head to theatre. Seth is on the afternoon list and hasn’t been able to eat since an early breakfast so by the time we are in the theatre waiting room he is starving and just talking about food. I attempt to distract him with a few games of table football (which I win for the first time ever – must be the lack of food !). The LP doesn’t take long and by 4pm he waking up in recovery and is ready to go up to the ward. Once on the ward he catches up with the food he has been dreaming about all day and I am happy to let him eat what he wants as I know as soon as the main Chemo starts his appetite will disappear. He quickly settles into his hospital routine – Harry Potter, lego and being cheeky to the nurses – and before we know it it is time for bed. Radio Lollipop volunteers always come round on a Monday night with craft activities for all the children on the ward so before bed he makes a stained glass owl for his window. As he is drifting off to sleep his main Chemo is being put up onto his drip stand and he says to me ‘I don’t mind being in here Mum, it can be good fun…I just don’t like the Chemo’.

* probably the biggest understatement ever from someone that has never had to go through Chemo.

Waiting

This week has been a week of waiting. Waiting for the results from Seth’s ‘Disease Reassessment’ (doctor speak for how well is he responding to Chemo) and waiting for his Neutrophils to improve enough to start Chemo.

But as of today we are STILL waiting. We have had no results and his Neutrophils are still low – bleugh!

I am not the most patient of people at the best of times and right now I want to scream….but tomorrow is another day with another blood test!

Thank god for Harry Potter!

Evie took it upon herself to entertain Seth today. The fallout from yesterdays Chemo delay has effected everyone and she is clearly worried about him, so she prescribed a Harry Potter marathon! They curled up on the sofa together and bonded over their love of all things Hogwarts!