Mum and Dad's Bit
MUM AND DAD’S BIT
What do you do when someone tells you your child has cancer? How are you supposed to react?
We both had pretty much the same feelings inside which was to just pick Jack up in our arms and run away to safety with him.
Reality told us there WAS no safety other than here with the doctors. It was hard to believe our Jack had cancer, as he didn’t look particularly ill, he wasn’t covered with bruises and was no thinner than usual. I even asked the doctors if they were sure the tests results we right and that they hadn’t made a mistake!!!! The consultant assured me that the results were correct and that Jack should start treatment straight away. We knew we had to hand his care over to them and wherever he needed to be and whenever he needed to be there, we would have him there.
Walking onto the ward and passing the tiles with drawings of children with various bandanas and hats on to cover their bald heads brought home to me the fact that this was real and our boy had CANCER! We felt like rabbits caught in car headlights.
A feeling that would stick with us for quite a long time, and keep reappearing just when we thought we were feeling OK about it all.
That first week when Jack was kept in to start the treatment was very hard for so many reasons. We had to get our heads around the diagnosis, we had to care for Jack and give him the poisons that were going to save his life, we had to tell our family – how do you soften that blow over the telephone?!!! , and we were separated from the girls. Jack and I didn’t see them for probably about 2 weeks and Dave for one week then just in between coming back and forth to the hospital. That was really hard for everyone, but especially for Gemma and little Katie who wasn’t quite 2 and didn’t understand where Mum and Jack had gone or what was wrong.
We became aware of very different reactions from people we think on how they were able to cope or not with the news. Some people couldn’t handle it, some would ask how things were and really want to know, and others would ask but we soon learnt they were asking out of politeness and didn’t really want to know. I think some people didn’t know whether we wanted to talk openly about it – which incidentally we have done from the very beginning as it is something we could not get away from and treatment was going to take 3 years so not something we could ignore/pretend about etc, not that we would. Once people realised we were happy to talk they would ask questions but often there would be a tear waiting to fall, and some even cried openly – something I sometimes wished I could do but was either concentrating too much on caring for Jack, or just as a tear fell, the doorbell would ring or someone called me to do something. I think maybe one day when it’s all really over I might cry for a few weeks to catch up!!!
We accepted all of these reactions as we understood it is very difficult and something that lots of people just can’t handle. Throughout Jack’s treatment lots of people have said, “I don’t know how you cope”, or “I don’t know how you do it”, trying to lead a normal life for yourselves and your children while Jack has to be in hospital so much and all the drugs he has to takle etc. We would often say to each other when talking about these comments, "How do we do it?", and we don't know the answer, I don't think there is an answer you just do it because you have no choice and you love your child/children so much you would just do anything that was necessary.
It totally turned our lives upside down and inside out and we have had no control over anything really for the whole of the treatment programme – even invitations to birthday parties of friends from school couldn’t be guaranteed as one minute they were OK to go, the next we were rushing in to hospital with Jack and the party was off – that happened SO many times, and the girls and Jack were just so good about it and so understanding it was unbelievable.
SPRING/SUMMER 2004
Once Jack had completed his first 8 week course of intensive treatment in the summer of 2004, Dave and I had to make a decision as to whether or not to allow Jack to enter a trial to determine whether children need 2 courses of intensive treatment or if one course is enough. What the doctors are trying to do is give enough treatment to kill off the Leukaemia but not too much to cause other health problems when they are older/grown up, and to use a new test to more accurately measure each individual childs’ risk of relapse/recovery prognosis.
Our Dilemma:
If we agreed to Jack entering the trial, we had to be happy with either outcome of 1 or 2 courses of intensive treatment. That is, if he received 2 courses, we had to be happy that we had made the best decision if Jack had complications from the chemo at any time including in later life, and if he relapsed we had done the best for him. If he received 1 course of treatment and relapsed, we had to be happy we had made the right decision also. This was a very difficult time. We located via the Internet the actual protocol for Acute Lymphoblastic Leukaemia and we both read it! This covered all the different types of Leukaemia, the various treatment protocols and possible outcomes good and not so good. It was very difficult and emotional to read but we felt we had to completely understand before we could make the decision that may affect Jack’s life. We made a list of questions and talked these through at an appointment with Jack’s consultant and made the decision to enter Jack into the trial.
Some weeks later, he was allocated to 1 course of Intensification treatment, which of course he had just completed.
AUGUST 2004
Jack now commenced his Maintenance Treatment Programme that would continue for the rest of the 3 years of treatment. At least now we could at least plan on the calendar his Clinic appointments, though many of these were changed due to being ill in hospital and too unwell for the treatment. We did not relax that the worst was over or things were OK now as although he had finished the more intensive treatment, he still had a long way to go, it just meant the treatment was mostly administered by us at home with just monthly visits to hospital. Life just continued on the knife-edge with us trying to live a normal life while watching and waiting for the next high temperature and mad dash to the hospital to treat the next infection.
Most of Jack’s high temperatures occurred late evening, on a Friday or weekend, just before the school holidays/half terms and or just before the party invite! Not his fault but difficult for the girls. We very early on prepared two bags that spent just over 3 years in the corner of our bedroom. One just for clinic appointments and the other a small suitcase with PJ’s and a change of clothes for us, toiletries, teabags etc, personal stereo and headphones etc, just enough to last us a couple of days. All we had to do when Jack spiked a temperature was phone to let the hospital know to expect us, grab the suitcase and my handbag and off we went. This was a high adrenaline burst every time that we never really got used to, we got a bit less stressed about it when his wiggly fell out as we knew the very worrying line infection was no longer an issue, and if we knew he had a good Neutrophil count that also made it less worrying, but it was still worrying everytime, and up until his final year, we were mostly kept in for at least 48 hrs and up to a week. The knock on effect of a hospital stay affected the girls and their grandmothers who would either have them at their house or come to stay at ours if they were in school and needed normal routine. Thank heavens for grandparents, what we would have done without them I don’t know and we will be forever grateful for their help.
MAY 2005
One of our lowest points was when Jack had Meningitis in May 2005. We didn’t know at the time that’s what it was and it was very, very scary, especially when on one occasion we had 3 or 4 consultants and 1 or 2 senior registrars stood around Jack’s bed shaking their heads and saying they don’t know what’s wrong with him and that he could be relapsing on treatment or there could be a problem somewhere else and he had to go for some scans – total fear and panic is a mild description of what we were feeling.
For nearly 2 weeks we had watched helpless while Jack had been getting more and more withdrawn and eating less and less while being given so many different antibiotics to try and treat his high temperature with no effect. We explained how Jack would just want to curl up under his NooNoo when feeling poorly and one of the nurses suggested trying an anti sickness medicine in case the antibiotics were making him feel so poorly. He was given the medicine and then we had to take him to Xray in his pushchair. Within about half an hour he was brighter and more alert and said he was feeling a bit better. Jack went in for his abdominal ultrasound, which was something Dave was unable to stay for as he was so worried and upset he thought he might pass out, so he sat outside. This was the first time Dave had been unable to stay with Jack which he found very difficult to deal with and felt guilty about as he wanted to be there for Jack.
Once over, it was with such relief that we returned with Jack to the ward where he continued to remain more alert, and gradually became interested in playing again. The following day, with a clear ultrasound and still alert, it was decided it was probably the antibiotics that had delayed Jack’s recovery, making him feel sick but unable to tell us what was wrong. Such a weight had been lifted off us even though we took nothing for granted and continued to have our ever present cautious optimism. It was a great relief when the Dr’s decided that Jack could go home on oral antibiotics and anti sickness tablets to return the following Wednesday for his overdue lumbar puncture, unless there were further problems in the meantime.
As planned Jack had his lumbar puncture on the Wednesday, and we went home as usual.
On Thursday, we had one of the worst phonecalls we’ve ever had. Jack’s consultant phoned to say the spinal fluid they had taken from his lumbar puncture had white cells in it. This could be from one of 2 causes. Either Viral Meningitis or Relapse of the Leukaemia while on treatment. Both of concern, but obviously the latter would be very serious indeed. The only way to find out which was the cause was to wait
3 WEEKS then repeat the lumbar puncture. If it is clear, this would indicate Viral Meningitis, if not……Relapse of Disease!. There was nothing we could do except WAIT…….I took the phone call and struggled initially to take in what she was telling me and had to repeat her words at least twice to her to make sure I had understood everything she had said. I was so worried I felt sick, and I had to explain it to Dave too, who had only heard my side of the conversation.
That must have been the worst, longest and most worrying 3 weeks of our lives. Unlike at the beginning when we didn’t know what to expect, we now knew what we were dealing with and just how serious it would be if Jack had relapsed while on Chemotherapy Treatment already.
3 weeks later, the lumbar puncture was carried out and we went home to wait.
On the Thursday, I had to go out and Dave told me when I got home he had been pacing the house, willing the phone NOT to ring until I got back because if it had, he would have just been sick on the spot. Shortly after I got back, it rang and I spoke to Jack’s consultant who said the spinal fluid was clear indicating just viral meningitis…JUST VIRAL MENINGITIS, JUST VIRAL MENINGITIS…….. after I hung up, Dave and I danced around the kitchen for a few minutes laughing that it was just viral meningitis!!!! Then we realised what we were doing and thought how people who’s child had viral meningitis would be feeling and exactly how unreal our life is that we were dancing for joy that that was ALL our son had had!
Having a child with cancer does strange things to you!
JULY 2005
Towards the end of July Jack developed an infection around his wiggly site that we had to treat with special cream initially twice a day but after 2 months the rash would come back if we stopped treating it and I ended up spending about an hour a day having to apply cream and then redress the line site as aseptically as possible 4 times a day. A month later we returned from a week’s holiday only for Jack to catch the wiggly while playing with his sisters and a couple of hours after changing the dressing, while getting Jack ready for bed, the wiggly fell out. We were amazed when Jack’s response once he had recovered from the initial shock of watching it slide out of him, was …“can I lie down in the bath now?”…
Whilst initially concerned, the lack of a wiggly was a great relief to Dave and a great concern to me!!! How strange to have such opposing effects on us. Dave was relieved as to him the wiggly is a direct access to his heart and any bugs can get to him very quickly and easily. To me, while still concerned of the infection risks like Dave, I also saw the line as a much easier way for Jack to have his bloods tested every week, his Chemo and when he has a fever and needs antibiotics, ready access with no need for needles in the back of his hands etc. I was very concerned about how he would cope with all of the above without it.
I needn’t have worried. After discussion with the Staff on Day Beds, we told Jack he would have to have a weekly finger prick to test his blood and magic cream on his hands for his monthly Chemo. He was more than happy about that as it meant he could have deep baths at last and didn’t have to worry about catching it.
I was now as relieved as Dave, and Jack was brilliant having his blood taken and Chemo treatments. We were so proud of him..
To be continued…….still under construction
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