Week 4: Our new normal
Normal…what is that?
I don’t think we’ve felt remotely normal in the last 4 weeks. We don’t know what our new normal is and won’t for some time. I talked about my frustration with the unknown last week and at times in the last few days it has reared its ugly head again.
What did our lives look like before the big C?
Rich and I both work full time.
I work for a London based global company and since having the boys I have a flexible working arrangement. I work in London 2 days a week and from home 3 days. The reality is that working from home means I work way more hours than i’d like. It is too easy to pick the laptop up once the boys are in bed. The reason I LOVE my job, I can’t remember the last time I woke up and thought “eurgh work” I’m engaged with what I do, I love my team and the colleagues i’ve grown to call friends.
Rich has a flexible work schedule too. He works for a US based firm with offices here in Milton Keynes and Staines. He has a strong bond with the boys and since they were 9 months old he’s put them to bed on his own 2 nights a week when i’m in London.
Rich and I also both travel for work and for pleasure. This can include trips overseas to the US or Europe. Rich loves a boys week snowboarding and I live for my long weekend with the girls.
And we travel as a family. It was why I started this blog in the first place to try and record those trips…although it wasn’t well maintained because life would get in the way.
We juggle it all, we sometimes nearly drop the ball, we rely heavily on support from my mum when our schedules don’t quite work out. And when Bilbo started school in September we started learning our new normal. Drop offs at school, then nursery. Pick ups with nanny for Bilbo and pickups for Harrison from mummy, daddy or Nanny and Bilbo.
What does childhood acute lymphoblastic leukaemia (ALL) look like for us?
For the last 3 weeks neither Rich or I have been to work. Work has been a massive cause of stress for me personally this week (more on that later) The next 2 weeks will see us complete induction or Phase 1.
For those who are interested we are following Regimen B treatment plan. It is intermediate intensity. This is the initial treatment plan offered to children over 10 years old and children with a higher white cell count at diagnosis.
The total length of treatment is just over three years for boys. 3 YEARS this has been quite significant in how we’ve been feeling over the last few days, 3 years is such a long long time.
The first phase of treatment is called induction. For the first five weeks of treatment, your child will have intensive chemotherapy treatment to get rid of as many leukaemia cells as possible.
Your child will need to stay in hospital for at least the first week or two because the doctors will need to monitor them closely for any complications from treatment. (we stayed for just under a week)
The doctors will do further bone marrow tests during and at the end of this first phase to see how your child is responding to the treatment. After two weeks, some children on regimen A will move onto regimen C. This will happen if the results of your child’s cytogenetic tests suggest that they need stronger treatment. (Bilbo has had two bone marrow tests so far)
After four weeks, your child will have an MRD test to find out how many leukaemia cells are still in their bone marrow. If there are a low number of leukaemia cells present (this is called MRD low risk), your child will stay on the same treatment (regimen A or B). If there are a higher number of cells (this is called MRD risk), the treatment will move to the stronger regimen C. (this happens in the next week)
After induction we move to Phase 2: Consolidation. I know less about this as we’ve not talked much with the consultants about this stage. I guess this is because most of what this will look like will depend on the next 2 weeks. But this is what it might look like:
The length of this phase and the type of chemotherapy your child will have is based on the results of the MRD test at the end of the induction phase.
- If your child is MRD low risk, then consolidation will last for either three weeks (regimen A) or five weeks (regimen B).
- If your child is MRD risk at the end of induction, then they’ll move onto regimen C and consolidation will last for 10 weeks.
- If your child is on regimen B for induction, but the results of their cytogenetic tests during induction suggest that they need stronger treatment, then they’ll move onto regimen C at the start of consolidation.
And then after this we have Phase 3: Interim maintenance and then Phase 4: delayed Intensification and finally Phase 5: maintenance. If we take the path of least resistence we’re looking at 26 weeks until we hit that Phase 5. I just worked it out on some google calendar and by coincidence that will take us to 19th May, my birthday.
Why is this so important to us right now? Why am I sharing this? Well the last 4 days have been incredibly hard. They’ve been hard for some old reasons and some new ones.
We faced Thursday with new hope and energy. As usual Bilbo was a champ. He does have anxiety now about being touched, especially around his line. But his reactions are very erratic and unpredictable. One doctor will be able to check his tummy with little resistance others get the full force of Bilbo’s wrath. Our nurse on Thursday was Laura, she told him she was his best boy on the ward for taking his anti sick medicine because he is fricking awesome (sometimes) if he knows what it is, why he needs it. We do a count down and he sucks it up and gulps his water.
Getting his line hooked up and having a dressing removed was a different story…he screamed, he shouted, he let all that anger out, but then in typical Bilbo style he gave Laura a big hug after it was all done.
Again we left the hospital with a sense of trepidation. How will he react, will this time be the one that makes him sick or have less energy? He dozed off in the car…my heart sank, he never sleeps in the car. But on arrival at home he was buzzing and we decided a treat was in order. We headed up to our shopping centre to look at the Christmas lights and ride on the train. Harrison was treated to some new wellies the same as Bilbo.
A visit to Milton Keynes hospital was the order of the day for the 3rd type of chemo Bilbo needs. This one is delivered by injection. I was dreading it. I took my mum along for some moral support and extra distraction.
Bilbo is asking a lot more questions about treatment, when the next appointment is. I know he is starting to process the enormity of what is going on. I can’t even begin to imagine what must be going on in his tiny mind. Thinking about it terrifies me.
So we all sat in the treatment room and held our breath as Bilbo tried to resist the inevitable and I watched my mums tears roll down her face as mine took the same path. I held him and tried to reassure him, I don’t know if he can even hear me. And then we wait, for what feels like forever.
He has to calm down, before we even try to talk to him. He wanted his socks and shoes off, everything is getting a little tight. After the injection you have to stay for an hour to make sure there is no reaction. Eventually we were able to make a visit to the office to collect a reward for being so brave. A huge thank you to the Henry Allen Trust for providing the ward with these treats, they made a tough visit a little brighter.
Before we left we were also introduced to Olly the Brave.
And as the weekend arrived Bilbo seems to be doing ok. He has smiled a lot, made jokes and has even enjoyed a school friends birthday party which was an absolute joy to see. (thank you Nicci) But i’m starting to notice the side effects of the chemo. Physically and emotionally, as the party went on he looked vacant, tired. I was so happy to see him joining in but gutted he’s a shadow of himself.
And tonight the f**kery started again with the gastro tablet. Totally my fault for not dissolving it earlier (we were too busy having fun) and it meant I had to give it to him after the other two meds before he went to bed. He was tired. He’d reached his limit. And there I was with the medicine he hates more than anything.
So by the end of the ordeal we both sat and cried on his bedroom floor, him for his mummy and me because i’m sorry. I’m so FUCKING sorry this is happening to my sweet sweet boy and that this is our new normal. IT SUCKS! He held me tight until he drifted off, I hope when he’s sleeping he is able to escape.
Our new normal
What does our new normal look like…
- There is always an overnight bag in the boot of the car
- We don’t leave the house without two additional bags one with all the hospital notes and info and our rucksack with chargers and a change of clothes for Bilbo and other essentials
- A trip to the shops now includes a bag with wet wipes, mannuka honey cream (don’t ask) hand sanitiser, tissues, a change of clothes and then throw in nappies and a change of clothes for H
- Whenever we arrive home (all of us) wash our hands and sanitise them and we ask visitors to do the same
- We’re always hoovering and wiping things down with anticbacterial spray or wipes (we are terrible for the environment at the moment)
- We administer medicine morning and night – Bilbo even tells me when it is time
- We constantly take Bilbo’s temperature, first with one in the ear and if it is looking high we then use the digital under arm one. Anything above 37.5 is a worry and 38 is straight to hospital
- We make food all the time and worry about whether we will have enough food when we’re out
- We can’t plan further ahead than tomorrow, as we don’t know if Bilbo will have a good day or a bad day
- Every trip we make outside of the house is planned and could potentially make Bilbo ill, but we’re choosing not to let that stop us from having a life
- Rich and I can’t really be away for long periods of time. Think of it like being a breastfeeding mum, you can pump enough milk to probably have an overnight maybe two. But beyond that you kind of need to be back, mostly because you don’t know if Bilbo is going to be sick and we worry. I managed a night out this weekend with the girls, it was exactly what I needed after 3 intense weeks
- Bilbo wants me a lot, if he can’t see me in the house, or we have a visitor after 5mins he’s whining he needs me, he doesn’t but he is looking for his security blanket. I’m happy to be that for him, but it is exhausting and it is hard and i’m not going to lie it sometimes drives me a little crazy
- I can go days without crying then the tears come and I can’t stop them
- We’re going stir crazy
There you have it, life isn’t normal anymore and I’m still really struggling with what our life looks like.
I’ve had two important conversations this week, firstly with my old boss Karen. She’s a dear friend and someone who I respect deeply, we talked this week and I was candid and honest about my work situation. I was then able to have a similar conversation with my boss. The truth is i’m lost. I’m a career girl, i’m a London girl. Work is who I am I don’t know who I am without it.
I don’t know when I will be back at work with any sense of normality and it is keeping me awake at night. Due to the schedule we used to keep, Rich and I managed everything, life was planned within an inch of its life. I knew what we were doing months in advance. I protected family time fiercely, I valued time with Rich and our joint friends. And we both valued time with our own friends.
And that is why Saturday, travelling into London with my girls was exactly what I needed. So thank you Claire, Lisa, Gemma, Iona and Sarah you girls rock.
What does this week hold in store?
Tomorrow we are going to take Bilbo and H on a surprise! And we have check ups with Milton Keynes and more chemo in Oxford.
And as our wall of love continues to grow so does the list of thank you’s we need to make.
A huge thank you to Robert for arranging the double pushchair. This will give us more flexibility when we’re out especially when we want to get out in the fresh air. Bilbo is still walking a lot, he’s doing really well but he does get tired.
A MASSIVE thank you to the team at Tippy Toes. Bilbo started there when he was 9 months old and it has been a home away from home for him. Both boys love their carers and the setting. Since Bilbo’s diagnosis the team have been supportive, kind and on Friday gave us a beautiful gift hamper. We’ve donated the cash to Aiden’s Funds for Fun.
My colleagues at work who raised just under £300 from a bake sale and the care package for the boys.
Thank you to the Pearson team for organising a bake sale.And everyone who has donated to our GoFundMe Campaign. We’ve reached £3370 of our £4000 target.