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 !!