I chose not to share my feeling anymore

I am closing down this blog. My daughter is developing normally, she is due to start her radiotherapy  and have a MRI scan  in the next few weeks. If all goes well the cancer will have been contained, yet with the type she it can come back aggressively and this is the heart break. I hope she lives for many years to come.

It is interesting to reflect at how saw  our little girl become ill, we asked for help from colleagues and health care professionals yet all that happened as silence or worse. Before she was diagnosed we asked for understanding as we had identified something was wrong yet once again silence or worse.

It is funny, that those who claim to believe in a more powerful force than man kind do not raise the phone, email or text to check how we are. Isolated and alone is my response.

It is funny, that many of those who claim to work in the carrying profession do not.

Living in the shadow of death, in a vacuum waiting the next set of blood  results, waiting for next MRI scan, for the temperature of child to rise my less than 1 degree, waiting, watching.

Everyone has problems to overcome, living with a child with cancer is hell on earth. Living with a child with a disability is hell and UNLESS you have personally gone through this with your own child you will NEVER be able to understand. Friends have and do provided physical and emotional support, yet I feel bitterly disappointed by many others whose professions say they would, will or shall help.  Their words are meaningless and empty. If this a wakeup call to them I question how quickly will they go back to sleep

I am choosing not to write on this blog any more for I chose not to express how disappointed I am with many people and professions I once respected, I only hope this never befalls you or your family. 

In and out

Olg girl has been going daily for transfusions yet within herself she is well. The scary thing is she is developing well, we are waiting for the MRI scan yet even if this is clear and the radio therapy goes well and all goes well due to the type and nature of the cancer in a few years time it could still kill her.

I do not wish this experience on anyone, cancer effects everyone and everything!!!

Another round of chemo

Tuesday was the 6th round of chemo, all went well, MLG's speech is coming back and developing nicely. But there was a heart breaking event, I met a mum and dad with a little girl who can be no older than 2 1/2, the girl has leukemia and the parents were devastated. The little girl's odds are, not so good, the look on the dads face was telling. His world has be shattered, his employer, unsympathetic, his life put on hold. And there was I talking to him, giving advice on how to stay positive, telling him he should set up a blog which would allow him to inform the world of what is going on.

I look every day at MLG and see her developing, walking, talking, playing, cuddling, loving. My love for her grows stronger every day, my respect for her has no bounds for the pain, fear and suffering she has to endure. 

Carpe diem-- seize the day, love every day, treat people the way you would want to be treated on your last day, for you do not know if today will be your last.

Things we took for granted

Yesterday MLG walked down the stairs on here own without holding on to the banisters. What's the significance with this? It was around March-April time that we noticed that Our Little Girl was having difficultly walking down the stairs, little did we know then that there was a tumour growing inside her and that this was affecting her balance. Is the chemo working, we do not know. It is nice having back our little girl who is speaking, talking and playing, long may it continue.

A surprisng week

Last week was a surprise. Things with MLG had settled down, we were expecting to have numerous blood transfusions (as the chemo hits harder) yet this was not the case. MLG’s own body started to work against her.

It started with the usual blood being taken, we had elected to have the GSCF (which is a drug to boost the immune system) given to MLG through her lines (less painful, stressful) even though it was an inconvenience as we had to drive to the hospital. On tuesday blood was taken, counts were made and as predicted MLG had to have both red blood and platelets the whole process would take 5 – 6 hours. AND then it happened, we took her temperature 37.8, this was not good. I drove her to the hospital to have her blood transfusions; the nurses once again took her temperature, 38.7. Now it was to time to time to worry, had we not been in hospital we would have gone straight to the hospital. Slowly MLG’s temperature dropped as the platelets and haemoglobin helped (boost of fluid)  but still her temperature was high, as result she said in hospital for 3 days and 3 nights (I did the nights while my wife did the days). Throughout whole the process meds were given every 8 and twelve hours. Blood cultures were taken and it was found that it was her bacteria (Staphylococcus) that had caused the temperature.

MLG dealt with the experience. I found hard it in part because the sleep deprivation and in part because I saw and heard babies that were screaming in pain, others that were lying with oxygen masks over their faces. The most disturbing experience I had was seeing a 2 week old baby with a cleft pallet  and the fear, concern, distress and love that was on their faces.

An unremarkable week

This week has been remarkable because it has been unremarkable. Mlg had chemo, but was only sick for a short time, the chief oncologist (cancer specialist) had a chat with my wife and the jabs have stop (GSF) because they are being given through my daughters Hickman lines (so daily visits to the hospital). We are in shock because it has been an emotionally demanding  week. The meeting with the oncologist was tough (8.30 pm in the dark!!!! It was scheduled for 10.30 that morning) I was not their as I was at home looking after our son.

ttfn

Another round of chemo

Mlg is just finishing off her 5th round of chemo and it's hitter her harder !!

Not my knee

Here we go ago, another jab and MLG is saying 'not my knee' repeatability out of fear, she starts crying and curling up to protect herself!!!! It makes both my  wife and I feel ill, damned if you do damned if you don't. Then in a few minutes its off to the hospital!!! Fun, fun, fun

Ahhhh

Writhing and screaming out of fear  

The GSF jab has just been given (the nurse gave the jab slowly and carefully), Mlg has got so sick and frightened of them that she has been writhing and screaming in fear of the jab for the past 5 minutes. Ahhhhhhhhhh

Bruising, ...yuk

Mlg is full of bruises, we questioned the nurse and GOSH why this is happening and the answer is….because the GSF (a drug that is being given by injection almost daily) is suppressing the body’s ability to repair itself. So a simple bump for you, me and kids turns it the red, purple, black and green bruise (some look revolting).  Ironic they give a drug to do one thing, then have to give a another drug to counteract the side effects of the other drug!!!! I hope it is all worth it.

 

Transfusion anyone ?

Here we go again, yet another platelet transfusion .....they need to be up soon as Mlg is due for the next round of chemo soon.

How many times can a kid go into hospital in a day, two today and they are different ones. University College Hospital (UCH) to chat about the forthcoming radio therapy and our local hospital for a transfusion. She has been a star but the radio therapy and CT and MRI scans scare us to pieces.

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I'm knacked

This is a very quick note, Mlg had a red blood transfusion yesterday, all went well but the hospital was heaving. What I hated was the other children's screaming and crying.....

the week that was

I have not written since last Monday for any reason aside from being very busy. Mlg has had the harshest reaction to the chemo so far. She has had 3 platelet transfusions in the last 6 days (they only last 30 mins for machine on to machine off). The worst part of her reaction has been the vulnerability to colds, loss of co-ordination, increase in bruising (a simple bump becomes a bruise), almost daily GSF jabs (to build her immune system) and general feeling of feeling poor. This has had a very draining effect on her.

One night last week (Wednesday or Thursday) her temperature started to rise, it was creeping closer to 38 C (37.7 degrees C), we decided to contact the local hospital and warn them that we might be coming in. Then we prepared a bag and checked her temperature every 30 minutes until 10pm then every hour till 2.30 am by then it had dropped to 36.9, so it was time for a few hours nap.

We also had chats with University College Hospital (she will be having her radio therapy there) and other specialists. And we live under the cloud of the MRI scan which is due at the end of November.

MLG is still driving us mad (in the nicest possible way), her speech is improving as are her cognitive and motor skills …… Fight the good fight cause she certainly has it in her.

What a fun day !!!

Ah well another day has passed, a visit from the nurse (who took blood and gave an injection), who then told use to go to the doctor. Then a 2 calls from different departments in GOSH + a call from University College Hospital (where the radio therapy will be administered) time for lunch. Another call from the nurse to instruct us to go to the local hospital to have a platelet transfusion and then home in time for supper!!!! And that was just our daughter.

A beautiful Sunday

The nurse visited today, took blood (it goes to the local hospital for testing that day) and left. All seemed bright and rosy in the house, we did a spot of gardening, I went down to our allotment, the family went around to the a friends and played. Late in the afternoon rang, the nurse had called to say MLG's immune system was down and she was coming rounded within the hour to have a jab to boost her levels up. Had we been out and about we would have had either had to return home asap or go to the nearest hospital to get the same jab. We were also told to expect to go to hospital in the next few days for a white blood cell transfusion (that is a 45 minute job), this is a typical day, everything seems rosy then....so we sit hear at home and wait.

A beautiful night?

Speak about be careful what you wish for, where was I on Friday night …the hospital with my daughter getting a top up of the red stuff.

I visited the doctor a few weeks ago and she said words to this effect ‘you are now starting to feel the effects of the diagnosis of your daughter’. How very true. I started writing it in the honeymoon period where things were a blur and everything happening so fast, I was living in a bubble. Now the reality has hit, the grind, the steady erosion of the mind, body and spirit.  I found last night very difficult in the hospital, for hours on end I heard and saw babies no older than a year old crying, choking and gasping for breath. Their parents and nurses sang nursery rhymes, walked with them and administered drugs to them, yet still the still these young lives were distressed. They clung on to their short lives, gasped, rasped for breath. After what seemed a lifetime and could very well have been theirs they settled down into some form of sleep.

As I write and read these  words back I realise that I must, for my own sake see this as a positive experience, goodness knows how, I must use my daughters illness as a positive event and tell myself that there will be a positive outcome.

To be honest there was a positive event. As I was taking my daughter out of the car we saw the moon last night was beautiful. A few clouds drifted slowly, lazily high up in sky, the air was light and cool, I held my daughter gently in my warm arms and we looked up at the moon. This is a moment in time I would never have had it not been for my daughter cancer.

An update

It has been a quite a few days since I last wrote the blog why? Effort, inclination, shock and fear.  My daughter is well or so it seems. She has not had to have any more transfusions, but she has had her fourth round of chemo, we now have two more rounds to go until the radio therapy starts. We were told the effects of the radio therapy, the schedule and what will happen afterwards, more chemo. The mile stones for us are the CT and MRI scans, they strike us with fear. We live in consistent fear of the type of cancer, it is haunting and stalking us.  MLG’s speech is improving steadily, her ability to argue is developing beautifully, her motor skills are great. Her ability to wind her brother up is a funny to watch and her determination staggering. In our heart of hearts we hope it is these attributes that will carry her, and us, through.

Saturday afternoon

Four kids playing with everything and anything they can get their hands on, laughing, painting causing havoc and annoying their parents (at times). Four adults talking about everything, anything and nothing; from bills, to TV, to telescopes and carpet cleaners. Eight people eating cakes, biscuits and drinking juice and coffee.

A lovely Saturday afternoon

A sense of community

It’s lovely to belong to a community. We have learned the value, purpose and sense of unity from our community.  As time goes by our community continues to stand by us, it is from them we gain strength, it is from them we stand firm, it is with the community's help that we will get through this.

 Thank you to our community

How is your daughter ?

This question bothers me, it distresses me and it hurts me. I will explain why.

Just image being on alert the whole time soldiers face when on active duty and people who live in a conflict zone have it to.

Just image waiting for the phone to ring and you would have to drop everything and leave your house never knowing when and if you will return, the cities of Europe went through this in WW2, the citizens of Europe went through this during the communist and fascist rule.

Just image listening to your husband, wife, child, partner, parent or pet’s breath and having to listen to irregularities just in case something changes and HAVING to call a doctor then and there.

 Just image when your husband, wife, child, partner, parent or pet stumbles and you HAVE to think is the fall normal OR is there something more serious and HAVING to call a doctor then and there.

Just image if your husband, wife, child, partner, parent or pet get a cut and it does not start to repair itself after 10 minute and HAVING to call a doctor then and there to check what to do.

IF the doctor stays it’s okay, so be it (you only hope their decision is correct, they’ve got it wrong before). If the doctor says take them to hospital then off you go as FAST as you can. 

Have you watched a lawn or a plant change through lack of water. Have any of you watched a tree change in autumn, how it sheds its leaves slowly. These changes are clear. Living with a child with cancer is living with the unknown, wondering and hoping that the pain that you are putting the child through is worth it. Wondering if the cancer is spreading or if it has been contained.

So when people ask ‘How is your daughter?’, we can only give the answer at that split second in time AND even then we do not know what is going on inside her. If people want to know how she is mentally, please ask that question ‘How is she feeling’ or something similar. We cannot answer the question ‘How is your daughter physically’ because until the situation is resolved we simply do not know.

And to answer the question, 'How is my daughter?' at this very moment in time she is happy.