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).
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” 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.
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!
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!
So, I am sitting by the swimming pool watching Evie swim. I feel relaxed (not something I feel very often at the moment) having had a lovely day out with the kids at Fort Nelson, followed by a quick trip to QA for a routine blood test before Seth goes back into hospital tomorrow. I am chatting to a friend and don’t notice my phone ring. A while later it rings again and as I pick it up I notice a variety of missed calls from the hospital and Ivan. I quickly call Ivan back and with his first sentence my world comes crashing down – ‘Seth’s bloods are not good enough, he can’t start chemo tomorrow’!
So many thoughts, my brains doesn’t know where to start….
Firstly, how are his bloods not good? They were fine last week and he has had a transfusion, what has happened? Does this mean the cancer is spreading ?
Secondly, does delaying chemo mean that it won’t be as effective, does this reduce his chances of beating this?
Thirdly, how much risk have I put him at taking him to Fort Nelson when he was completely neutropenic?!
Lastly, how on earth do we cope with Chemo next week? Ivan has this week booked off work to look after the kids while I go into hospital but he won’t get another week off. With no Grandparents around (all on much deserved holidays) and three other kids to sort what do we do
So, what have I learnt today? My mistake was to think I understood this illness and how it works, to think we had found a routine we could work with. Today has taught me that there is nothing routine about Cancer or the medicine that goes with it. So for now we wait…
Me: ‘It is really good to see you with so much energy little dude’
Seth: ‘Well enjoy it Mum cos I am going to feel rubbish again on Tuesday’
Today was definitely a day of two halves. It was an early morning trip to Southampton for an MRI. Seth had been worried about this test most, he dislikes having to keep still and loud noises and an MRI combines both of these. He had taken ‘How to Train Your Dragon’ on CD to listen to while the test took place and once he had instructed the radiographer to ‘turn it up loud cos I couldn’t hear it over the noise of the machine last time!’ he seemed ok to start. It is such a long time for anyone to stay still and half way through I could sense him getting really stressed, but apart from a small jiggle of one foot he managed it. Once released from the machine he looked like a huge weight had been lifted off him. Next stop was a CT scan. Another machine to lie in, but this time just for a few seconds. He was so relieved at having survived the MRI he didn’t stop talking the whole time we were in the CT room, apart from when they told him to hold his breathe for the scan! With both scans done he decided he had earned a Subway so we headed there for lunch before making our way home.
Once home he had the chance for a bit of a rest before the next big event of the day – Andrea and Niamh’s haircut! My business partner Andrea and Seth’s friend and classmate Niamh had decided to have their hair cut off to donate to the Little Princess Trust. They were also raising money for Piam Brown ward through sponsorship. Seth went round to watch the big cut and to cheer the girls on. He really enjoyed his evening and even got to play Nerf battles – it is so lovely to see him get a little bit of ‘normal’ time. At the last count the girls have raised over £1500 and the both look gorgeous with their new haircuts too.
Today was supposed to be our only hospital free day of the week, but after a blood test yesterday morning we got a call from the Oncology team last night to say that his hemoglobin level was very low and so he need a transfusion. We set off grumpily to QA early this morning, leaving the rest of the household to enjoy the sunshine. Whilst on route we were called to say that the blood would be delayed, so once we arrived at QA we diverted to Costa where Seth ordered a chocolate Frappe and double chocolate muffin! It is so good to see him want to eat that I didn’t dispute the early morning chocolate overload. Once we were in CAU and the blood was dripping in we killed the time by playing games – Kerplunk being the favourite this morning – and reading Harry Potter. It still amazes me how quickly a transfusion starts to make a difference, after an hour the colour starts coming back to Seth’s face and you can see his energy levels rising. The bloods were all done by 2pm and we made the fastest exit from the hospital ever…we were practically walking to the door as they were unhooking him from the machine!! We made it home with just enough time left for me to enjoy a quick trip out with the eldest while Seth enjoyed the company of Tess and Grampy! Tomorrow is MRI day, his least favourite scan, so I know I am in for a grumpy start to the day again.
One of both Seth and my frustrations has been that when we are at home he can’t get out and about much as he has very little strength or energy. It was such a beautiful morning and as I was saying to him that it would be lovely to go for a walk he came up with a great idea – our old buggy board! So, after a bit of rummaging we managed to find the old board and we were off. We went for a walk with Louis to the park and then back via the Library and the shops. A beautiful day to be out with 2 of my favourite people in the sunshine.
A busy day for all the family today. Alice was off to her first football match, Evie was swimming in a gala and Tess was off to see her favourite person in the world.
Seth was going through the final 24 hours of chemo and after 6 days he was more than ready to come home! I took over at the hospital for a couple of hours so that Alice and Ivan could go to the football together. The boy was packed and ready to go, but as the chemo was still running we just had to twiddle our thumbs and wait….and a bit more waiting. But finally it beeped and he was off home. Round 4 of chemo done! In his words ‘there is nothing like the peace and quiet of your own room Mum’. Now we just wait to see if he will make it to the next round before he has to go back in. Keeping everything crossed…
How do you prepare for someone coming home from hospital after chemo? Well in this house we just set off one of these cans of in each room and take cover!!!
Today Seth took over my laptop after somehow convincing me to download Minecraft onto it for him! So, I set to work on updating his Beads of Courage*. It is quite mind blowing to thread his beads onto the strings, knowing that each bead represents a challenge or achievement that as adults we would not want to go through let alone ever wish to see our child go through. Feel so proud of the dude for the way he has coped with everything so far….and then it was back to Minecraft ‘ Mum, do you know how to find hidden Mines?’. Help!
*Beads of Courage is a program that Children with serious / life threatening illnesses are able to enrol in that is designed to support and strengthen children and families coping with this journey. Through the program children tell their story using colorful beads as meaningful symbols of courage to commemorate milestones throughout their treatment.
So today after 35 days in hospital the boy came home! I can’t describe how amazing it is to have all six of us under the same roof. On the other hand it is a little bit like taking a new born baby home for the first time. Have we remember all his medicines? Is his line okay? What if we break him?! I don’t think either Ivan or I will sleep tonight, but who cares, my boy is home.