Day 929: Cancer Wall Again
Bilbo has been on treatment for 929 days that is a 3rd of his life and we still have 306 days to go. Bilbo is really struggling, we are all struggling. We have hit the cancer wall again.
Cancer Wall Again
If you follow our social media you will know the last few months have been exceptionally hard for Bilbo.
I would go as far as saying as it’s been at times worse than when we were facing those first few months of diagnosis. It is also way worse than when we hit the cancer wall the first time back on day 171 Day 171: The Cancer Wall. It’s been too hard for me to even want to write about it. We have well and truly hit the cancer wall again.
This blog has always helped me, I used it as therapy. It was how I was able to fill the huge void at the end of each day. I wasn’t working and I needed a way to make sense of what was happening to Bilbo and our family.
Almost 3 years on, as we finally get Bilbo into bed each night. I don’t even want to think about processing what has happened in the lead up to bedtime. All I want to do is shut the door on it in my mind. And for the last few weeks I jump back online and use work as welcome distraction.
Most of the time I just feel numb. We are all numb from how much trauma we have dealt with in the last few weeks. And if I am honest I am terrified that if I start to unpack it, any of it. I am worried what might come pouring out won’t go neatly back away.
So in-spite of how I feel about writing, I have written this post because this blog has always served multiple purposes. It informs our army of friends and family about how we’re doing so we don’t have to update multiple times over. And it serves as a record of our journey. I’ve always hoped that in some ways it would also help others.
Our focus has to be on being strong for Bilbo, for Harrison and for each other. I will deal with how I’m feeling when the time is right – that time is not now.
What I am feeling is incredibly angry. I am angry that my little boy is still suffering. He is still in pain and we are still at the mercy of what cancer decides to throw our way in a daily basis. I was told maintenance would be easier – it isn’t!
I am also mindful that last year we all had a bit of freedom and control taken from us, we were all in it together. Now as we start to come out of lockdown I am reminded we aren’t the same. We are different, and as each day passes it it getting harder. Plus we are still living the Covid-19 nightmare and the policies and procedures it’s left in its wake for families like ours.
He’s not great! Our dream of this blog, after the move becoming about days out and adventures in Devon are firmly on ice. Over the course of the last 8 weeks he’s got weaker, more tired and he continues to be plagued by issues with his hands, mouth and feet.
We’ve gone from walking to and from school, to driving in every day. And Bilbo is only managing to stay for half a day at most. A call from his teacher at lunch time has become a regular occurrence and he hasn’t even made it in at all this week.
Back and forth
We drive backwards and forwards to the Royal Devon and Exeter hospital to see his oncology team and the dermatologists almost every week and sometimes twice a week. We’ve had prescriptions for antibiotics, antivirals, steroid creams, steroid strips, more antibiotics and now folic acid. We’ve had blood tests, urine samples and every swab you can imagine.
We’re ruling things out and ruling things in. Right now we have more questions than answers. But we have the very best people looking at the data, the symptoms, his blood work and making decisions for us.
A Bit About What Is Going On
Bilbo has 10 months of treatment left. But his problems started back in September, Day 825: Cruel Cancer Side Effects. We’ve been working through a number of hypothesis. The most plausible right now is that his chemo (one of the two) could be the cause of his issues. Reducing it, or stopping it is not an option. The whole point of maintenance is to keep Bilbo cancer free, the last resort would be to reduce or stop his chemo.
But we aren’t talking about a few side effects. Bilbo also has a horrible skin condition on his hands, mouth and feet. That over time have evolved from one area of the hand to another, from one part of his foot to another and his mouth has got progressively worse.
Quality of Life
He can’t hold a pen, his cutlery, he can’t grip with his hands at all really. Bilbo can’t dress or undress himself, put his shoes on. He can’t even comfortably play his beloved Lego as it’s fiddly and his fingers are just too painful.
Home learning is challenging as he’s so tired.
He’s not just tired from the physical effects of all of these challenges. We are seeing the mental and psychological effects this is having on him too.
We’ve lost the Bilbo we know and love. He doesn’t smile as often, we hear his laugh less. He’s lost the twinkle in his huge beautiful eyes. He’s lost his confidence. Cancer has taken our Bilbo’s spirit.
Every day is getting harder for him and harder for us. Because everyday we face the same challenges, and everyday he is in pain. It’s constant and it’s relentless. We are exhausted and we can’t see an end in sight.
In meetings this week with the oncology team I broke down – behind my mask I sobbed, this isn’t a life for him. These issues are impacting on Bilbo’s quality of life. This is fast becoming worse than when he was first diagnosed. He was never debilitatingly tired like he is at the moment.
Understandably Bilbo hates everything we have to do to him. The creams are uncomfortable or sting, they’re intrusive. But the alternative of leaving it is not a better option.
He is self conscious of his face and how he looks, for the little boy who’s terrified of blood, he sees it on napkins almost every time he eats. And all over the bed sheets in the morning from his lips.
An unknowing cafe owner makes a passing remark “have you been eating chocolate ice cream” and it’s just too hard to explain the actually reality to a complete stranger. But the impact on Bilbo is devastating.
We got off to such a great start with his school but he’s been there less and less over the last few weeks. His teachers have been phenomenal. But as a parent, I worry, is he making friends? At his old school they all knew his background and had been on the journey with him. Here he’s just the new boy with the funny lips and hands.
I worry every day kids will make comments – not malicious but the kind of comments kids make, the honest stating the obvious kind of comment.
I am so incredibly grateful that my mum is living with us right now. Rich and I working our full time jobs and just the normal routine leaves the plate full. She provides and extra pair of hands when it all gets too much. She is an extra shoulder to cry on and an extra breath of fresh air when we’re at the end of our tether.
And of course Harrison is once again in the middle of all of what is happening around him.
Whilst he’s thriving at school he’s finding it hard to be in the constant shadow of his brother and his cancer.
The boys have a bond that is remarkably strong. Bilbo is the yin to Harrison’s yang. They’re inseparable and can’t bear to be apart. Harrison comforts Bilbo when he’s sad, he’s even offered him lip balm demonstrations to try and help Bilbo overcome his fears.
But it’s hard. I have shared before how difficult it is to be a sibling of a child with cancer. The attention is always on the one with cancer. It’s all about what they can’t do, what they can do, their appointments, their pain, their suffering. But the reality is no one escapes the suffering from cancer we all live it.
Harrison is missing out on life, but what choice do we have? The mum guilt is real. And I know I’m over compensating in all the wrong ways, but what can we do? We are just trying to survive.
What is killing me is our evening routine. As bedtime creeps up on us I start to feel the dread. Every night I have to convince Bilbo to let me apply his steroid creams. His fingers are so horrifically painful that he won’t even let me touch two of his fingers.
He wails, he cries, he runs away. It is exhausting. We sometimes manage to calm him down enough to talk him through it but mostly it is simply awful. After I’ve applied the cream to his hands I have to then put it on his lips. By the time we’ve finished the ordeal Bilbo is so upset. It is almost impossible to calm him down.
Since Monday we’ve given up putting him to bed. He sleeps with me downstairs.
This week we’ve also had an additional scare. In the early hours of Tuesday morning not long after I got into bed Bilbo bolted upright and was then sick.
He terrified us because not only was he violently sick, we spotted blood in it and we advised to bring him into hospital.
Long story short, we believe the blood was from his cracked lips. Which had been bleeding endlessly all week.
I am incredibly grateful for the doctor who was on shift, she took a pragmatic approach with Bilbo. She didn’t want to traumatise him with a cannula and agreed to observe him and then make a call. It was the right thing to do. He didn’t have a temperature, there was no other signs that he would need anything by IV. He was sick again after breakfast but we all agreed it wasn’t something to be alarmed about.
Being an inpatient meant we also got another chance to meet with his oncology team. I can’t stress how amazing they have been. They’re relentless in their pursuit for a solution for Bilbo. But he’s got everyone stumped.
We were able to set out a super clear plan of action for the next few weeks. My only concern is that what is needed to get us through the next couple of weeks is patience and it is in short supply. The other thing it needs is Bilbo’s cooperation and he’s had enough.
I don’t know what the next few weeks holds for us. We are back to hospital on Monday for a follow up with our dermatologist. In all honesty the creams we’re applying aren’t working. He has three different steroids for his hands and mouth with different strengths. We’ve added a folic acid tablet, they will test his zinc level on Monday.
He was sick again this morning. So we now have being sick as another thing Bilbo is terrified of happening. I am comforted knowing he is by my side. The best place for him until this situation improves.
We’ve taken a break from his weekend antibiotic to see if it makes any different, it is one option we’re exploring. Bilbo has had no chemo breaks throughout maintenance so all of this could be from his chemo. We won’t look at reducing this until we know more from his bloods.
Taking It One Day At A Time
There is no playbook for this. Bilbo is unique, like every child going through cancer. They all react differently and they all have different experiences. So we take our lead from the experts. But at home, we are just trying to survive.
We know what we need to do, but trying to convince a 7 year old little boy that what we’re doing to him is going to make him better when so far nothing has actually worked, is soul destroying.
I don’t know how we will get through the next 10 months, we have no choice but to take it one day at a time.