…….and I am depressed. There I have said it, admitted it, put it in to writing. Does it make me feel any better….no. Does it change anything…..no. But it is the right thing to do because I do have to face it, I have to get through it before it eats away at me and makes life for my family worse.
I didn’t realise until this past week that I was slipping down, everyone keeps telling me how strong I am being, we are being, the family is but I don’t feel strong. I feel broken. As a family we have been living through Skywalker having Cancer for 5 months now but I am the only one who can no longer cope and I know why….I have no outlet. I am with Skywalker 24/7 and have been since the beginning. I no longer work, barely get out to run, don’t shop on my own unless Skywalker manages a day at school which are few and far between, the only adult conversations I have are before and after school in the playground or my parents and they all tend to revolve around how Skywalker is doing. Most of my friends seem to be keeping their distance, or don’t know what to say. Life is hard and I am sinking.
It is also my birthday this week, I will be 36 and Skywalker will be having chemotherapy that day so we will spend the day in hospital basically the story of my life at the moment!
We are now mid way through the next phase of treatment and it is taking its toll on poor Skywalker. He isn’t struggling physically but we just can’t get him to eat. Before treatment started he was 18.95kg his lowest weight was 15.85kg, he now weighs around 16.4kg which is about a kilo less than at the start of the week. It doesn’t seem to matter what I do I just can’t get him to hold weight mainly due to the fact I can’t get him to eat. This last week he has been like a pregnant woman with cravings all he has wanted is scrambled egg, brilliantly nutritious but not particularly filling or full of carbs which he desperately needs. If he is not craving then he is indecisive. “I am hungry” are words I often hear equally followed by, when asked what he wants, “I don’t know, I don’t know”. It doesn’t matter how many times you list all the items you have in the cupboard he still can’t tell you what he wants, he then falls apart and doesn’t want to eat and so anther meal or snack is missed. We have been trying to fill him up with meal replacement milkshakes that the dietitian gave us but we are still struggling.
Of everything we have gone through as a family in the past 5 months this is the thing I find the hardest. I can cope with the chemotherapy, the blood tests the transfusions and even holding him down when needed because he can’t keep still when he needs to but not being able to get him to eat kills me. I breastfed him for over a year, I provided everything I could to keep him strong and now all I can do is watch as he slowly loses weight and I seem to have no way to control it. Eating has always been an issue for me, I suffered with a mild eating disorder as a teenager/early adult, and I am very aware of what low weight can do to a body. I have always been so careful to make sure that my body insecurites don’t get passed on to either Skywalker or Pops but now all I can focus on is food and I know it is getting me down.
On a separate issue we have also had to start looking for Secondary Schools for Pops this week. Although she is only just 9 by this time next year we have to apply so we only have 12 months to decide which school she is going to spend the following 5-7 years at. This is a really big decision and yes I am indecisive. I still live in the same town that I grew up in and so there is a good chance that Pops will attend the same Secondary school I did which is a very scary prospect!
Well we got fantastic news this week….Skywalker is in remission!!!! We are still a very long way from being cured but it is a step in the right direction.
We have had a really difficult couple of months with having to make a decision whether to include Skywalker in a trial for a couple of stages of his treatment. It is a randomisation trial with 4 options nothing completely untried or tested but one of the options has less treatment than the others, we have had to make the decision knowing we have no control over which option he will be given. I made my mind up early on but Rich really struggled, for him it was trying to figure out how he would cope if Skywalker relapsed if he was on anything but the standard and how much he would blame himself. Well after much soul searching and sleepless nights we decided to sign up to the trial and guess what…we got the standard treatment so obviously Skywalker is part of the control group and all the sleepless nights were for nothing but ultimately we are happy with the answer.
Treatment starts on Monday and I am really not looking forward to it we have had Skywalker at home during the school holidays with no treatment for the past 3 weeks and he is almost back to his normal self, just a little more tired. He has gained weight again, though he is still not up to the weight he was when he started treatment which is shame. Monday brings back Vincristine which to us is the devil drug, it is the one drug that seems to badly effect Skywalker in that it decreases his appetite badly and really causes problems with his legs and feet.
On a positive note Skywalker is looking forward to going back to school next week (when he can) and is going into year 1 and Pops is going in to year 5 which means rather than worrying about Leukemia all the time we need to start worrying about Secondary schools too.
And so life continues. We have had some great weeks lately and we have had some pretty darn awful ones but what I am learning is that life continues regardless. Skywalker needed 2.5 weeks to get over the first part of his second phase of treatment but finally his neutraphils are back up high enough to continue. We are discovering that the chemotherapy drug Vincristin is the devil, it takes away Skywalker’s appetite and it makes his legs ache and he is much less mobile whilst on it but Cytarabine and Cyclophosphamide are ok so much so that even though he has had 5 different lots of chemotherapy this week he has also managed a whole day at school and as I type is nearly finishing another one.
I have also learned this week that sometimes you have to tell you children the truth even if you know that is will hurt them, especially if it is something they need to hear in order to grow. Pops is struggling at the moment, she is angry and scared and worried and jealous and oh so many more emotions and in true 8yr old girl style she has absolutely no idea how to deal with all of it. Sadly the way she has found seems to be completely alienating the kids in her class and I don’t blame them because she seems to have become mean. The things that come out of her mouth sometimes are so cutting they would make most adults walk away so I don’t blame the girls but I am sad for my little girl and I am struggling to find the best way to deal with it. Pops last night said she has words she wants to say to people to apologise but doesn’t know how to get them out so I suggested she write cards to her “friends” or at least those she would like to be friends with to say sorry and that she is finding life hard at the moment and she doesn’t intend to be horrible but she can’t always help it. It seemed to help her and give her something positive to focus on so I am hoping it will work in the same way with the girls but I guess only time will tell.
Rich and I are both finding our escape in running, I am finally up to 3 miles again which I am happy about but as I am signed up for a half marathon in March I really need to try and extend my distance.
In 1.5hrs it will officially be the summer holidays and I get my two beautiful babies to myself for 6 weeks and I honestly can’t wait. Rich and I have some important decisions to make in that time and Skywalker has another biopsy but mostly I am focusing on Pops turning 9 I just hope that Skywalker and I are around to celebrate it in the way that it should be!
Pops is so desperate for life to go back to normal, as are we all, but instead we are having to find a new normal. We are slowly learning to leave how life was before Leukaemia behind and embrace how life is now and how life is going to be in the years ahead. So in embracing this we took ourselves off to celebrate armed forces day in our local park complete with Skywalker in his wheelchair. This isn’t the first time we have been out in the wheelchair, but it was the first time that we have attempted anything this crowded and on grass. Well it was a success and the kids loved it and we all came home a little bit more deaf thanks to a WW2 re-enactment and I am a little poorer thanks to the ridiculously expensive fairground games and hotdogs!
What I find hardest with our new normal are the looks from strangers, and adults are the worst. Skywalker has had a particularly challenging week, he has had chemotherapy 6 days out of 8, plus a blood transfusion and a platelet transfusion and he is also now neutropenic, all this adds up and means that he is feeling pretty weak, but it doesn’t make him paralyzed. The looks come when this little boy jumps up out of the wheelchair and starts tottering around or messing about with his sister. Now for some I think it is just shock, but for others it seems like they are disapproving almost as if the wheelchair is a prop and my little boy (and I) are faking it, I feel like turning around and asking them if the loss of hair and nasogastric tube aren’t enough?
Another part of a new normal is the language used in our house. You will regularly hear the words “transfusion”, “biopsy”, “neutropenic” and “Hb level” words that 2 months ago would only have been used in a game of scrabble (well maybe some of them anyway) where as now even 5yr old Skywalker uses them. In fact he does not like us shortening the words so chemo has to be chemotherapy and op is operation. The hardest sentence this week though was “It is not fair that I am neutropenic”, this is actually the first time he has complained that anything is unfair, but it shows for the first time he has truly understood what being neutropenic means. It means that he cannot be around large groups of people whilst inside and definitely not in an area of air conditioning, he can’t go to school, soft play, the cinema or even the local supermarket. This is his and our new normal and at the moment however hard I try to keep it as before it is impossible.
On an upside my beautiful boys picture went a little viral on fb this week which was great as it was thanking people for donating blood and trying to persuade those who don’t to consider it…go Skywalker.
There is so much fear in my life at the moment, fear of losing my beautiful boy being the most prominent but the longer this process goes on I am discovering a new fear one which is almost on a par with losing him. It is the fear of getting it wrong. Last night I fell asleep watching the football, I never do this but I am so exhausted I couldn’t help it, I woke up at 1115pm and was about to drag myself off to bed when I realised that I hadn’t given Skywalker his chemotherapy. Now I have had to give Skywalker mecaptepurine (6mp) every night for the past 10 days and I haven’t missed it once, but last night I nearly did and it scares me that I nearly forgot and what the consequences might be. Tonight I found 4 spots on Skywalker’s arms, now they weren’t there this morning and they look a little like the start of chicken pox, but he doesn’t have a temperature or any other symptoms, and I know deep down that they are just spots (possibly a reaction to the blood transfusion he had today) but what if they aren’t? Chicken Pox could and quite possibly would kill Skywalker and I would never forgive myself if that happened and so this is where the fear lies, the fear of getting it wrong, the fear that if I do something wrong I could literally be killing my son. What if I miss a temperature, a spot, an infection a simple missed symptom could be the difference of life or death for Skywalker.
There is one thing that I am sure of….fear is exhausting and I am really really exhausted now.
A quick word on living in a village, we are so lucky! The village school only has about 180 pupils both my kids are known by everyone, and I really do mean everyone, we are stopped in the street by parents we barely know whose children have been talking about Skywalker and just want to check in on us. Then there are our neighbours, people who are acquaintances more than friends but whom delivered dessert to my door on Saturday when they realised that we couldn’t get out to the street party they were holding and wanted us to feel included.
Village life is awsome.
….and all the men and women merely players”. Or something along those lines. That is how I feel at the moment a player following someone else’s script, in my case it is a script written by our main consultant who is currently dictating our every move. I don’t resent the consultant just the situation.
Sadly Skywalker didn’t respond as well as hoped to his initial month of treatment and so we have been moved on to Regimen C instead of the standard Regimen A.For poor Skywalker this means he is now on a very gruelling cycle of 6 chemotherapy drugs instead of 3 and for me it means that I added the title of nurse to the long list of my current roles. We have figured out that a round trip for us to the “local” hospital is 30ish miles and takes between 30 and 45 mins each way, we had to do this trip on Friday (stayed all day), Saturday (stayed 30 mins), Sunday (stayed 30 mins) and Tuesday (stayed 6hrs), it is not only the treatment that is gruelling but the travelling is proving gruelling for both Skywalker and I. We have to do the same again this weekend, with Pops in toe and to top it off it is Father’s Day this Sunday and we have to spend the morning at the hospital and then he is off to work at 2pm, the kids are gutted to not be able to celebrate Father’s Day properly.
This whole process is so draining and such a roller coaster, we are so lucky that Skywalker has had a good couple of weeks and even managed a few hours at school because his levels are dropping again and he needed another blood transfusion this week and this is just the start of another down. If we hadn’t had the up then it would feel like all we have is the down and that would be very very hard to watch. The blood levels aren’t the only things dropping, Skywalker has now lost 3kg since all this started and has now lost his appetitie also I have had to resort to feeding him milkshakes down his NG tube which is time consuming but at least I know he is getting at least half the calories he needs a day and all the nutrients but it so hard to watch, on the upside he is still very upbeat most of the time and is still very cheeky and much loved by all the hospital staff.
I have never been able to figure out what I believe, I love a line in the film “Angels & Demons” where Tom Hanks’ character says “faith is a gift I have yet to receive”. I want to believe in something else and envy people who have such faith in something that cannot be proved, but I find so many of the Bible stories unbelievable and do not agree with so many of the “Christian” teachings, yet I find myself praying. I promise God if he will keep my son safe then…..I don’t known what I promise I just ask, hope, trust it will all be ok.
For the first time last night Pops asked why Skywalker and said it was unfair. I replied “why not?”. If is wasn’t Skywalker it would have been another poor child and maybe that poor child wouldn’t have a family as strong as ours, maybe there wouldn’t be so much love. I told her we can cope with it because we are all in it together……I just hope I am right!