Friday, December 2, 2011

A new enemy, a new battle.

Frances turned 9 recently - she had an ordinary birthday party, with friends, playing soccer and eating party food. It is such a relief to be ordinary. However, we now find ourselves heading into the mirky , unchartered land of late effects - so we will probably never be normal.

Frances has been diagnosed with CKD - chronic kidney disease - as a result of her hepatic vein being cut during surgery to remove the tumour. Eventually she will have to have dialysis and kidney transplants and in the meantime we have to look for symptoms of her kidney function lessening - lethargy, inability to concentrate, general malaise, odoema etc. Rather than relaxing into "Phew! The cancer's gone!" we now fnd ourselves in the 'orange alert'mode - fretting over stomach aches, infections and other illnesses in anticipation of her going into decline again. She presently has proteins, white blood cells and glucose in her urine and her cholesterol is high 9another sign of CKD) but she is generally healthy and energetic. She does tire easily, however, and I noticed was a whole two laps behind the front runners in a recent school race. Her appetite, I feel, has also decreased a little recently and she has become a fussy eater.

We have decided not to give her human growth hormone, despite her height being only 114cm. There is too much risk of it growing back neuroblatoma cells as well as healthy cells. the only medicine she is on at present is thyroxin, as she is not producing enough herself.

She has returned to learning the recorder, which, depite her moderate hearing loss, she is mastering well. Her hair is beginning to thicken and grow, although she did cut it herself again a little while ago. (she said she had a knot that she couldn't get out - so she cut it out!)Luckilly we have a clever hairdresser who made it look like she had a very modern haircut rather than a bald patch.

Thursday, September 9, 2010

Here, right, now.

I think it's time to stop pontificating and start saying it as it really is,and hopefully some of it will be helpful and sometimes I will need advice to cope. So now you will be reading more about our daily life and what is happening with Frances. Any advice I give is greatly inferior to that offered on listservs. Our family has been through so much, too much sometimes to cope with but we are all still here and we are still together. We have all reacted in different ways to Frances's illness and subsequent disabilities, and we continue to bounce and slam off each other - sometimes hitting the roof, sometimes sliding to the floor.

So I will furnish all you lovely readers with the facts rather than my ideas.

Frances is at present slightly deaf for which she has hearng aids. She is about a half year beind her cohort for which she going to extra lessons after school. She is very small and is attending two clinics - renal and endocrine to try and find the cause of this. She has now attending oncology clinics at 3 month intervals.

Last week we had a little scare because she developed lumps behind her ear. We were relieved to find out that they were probably caused by lymph nodes being inflamed and they have subsequently disappeared.

She is very excited about starting her new school next term, which she will be attending with her big sister. I am hoping by then that her hair will be long enough to put up into pigtails for the first time.

We are all a bit squashed in our new house - there are six of us plus 4 cats, a dog and a few chickens and turkey - but I'm sure something will happen to change that.

Frances remains happy, bubbly and positive about life and sometimes drops gems like "I stayed alive so I could be with my family."

Wednesday, September 1, 2010

Constructing Financial Umbrellas

I bet a lot of you reading this title will think - yeah, right -skip this post, this is impossible. For many of us it is already too late. Since the advent of credit cards, we are a lost cause. The ability to save for even a deposit on a house, let alone a rainy day, is no longer a skill we possess or have passed on. Yes, it is a fault and we can blame the media for flashing desirable products across our corneas or banks for allowing no-deposit mortgages, or the culture of 'living the dream', but basically, we are greedy - "We live beyond our dreams on other people's dreams." - Janis Ian

If we are to survive trauma, we need to reclaim our parents' and grandparents' ablity to defer gratification. Somehow, we have to drop the 'now' label we give to our generation and look forwards and backwards to gain a sense of equilibrium. Having a little set aside - even if it is an emergency fund of a couple of hundred dollars - enough to buy some groceries or fill the car - can be enough to save your sanity.

Even if you have put money aside, or are moderately well off, trauma will hit you like a tornado financially. When a child is chronically or acutely ill, as our daughter was, someone has to stay in hospital - and so an income is lost. If you are given very poor odds for survival, as we were, both parents will be experiencing anticipatory grief and Post Traumatic Stress Disorder. This latter syndrome makes it difficult to sleep, difficult to concentrate, difficult to make decisions and can cause depression, hypervigilence,and the sense of being alienated and alone. Experiencing these symptoms can make it very difficult to work as well as having extra parental and housework if one partner is in hospital.

Many parents of children with cancer end up having to re-mortage their homes or lose their homes and start renting in order to cope with the financial change not only by having one or two less incomes but also the possibilty of having to alter their homes to accomodate physical handicaps that their child may accrue during treatment or as a result of the cancer. Many parents also have to travel overseas for treatment or live in countries where treatment is not free.

If you cannot create your own financial umbrellas, talk to your social worker, your citizens advice bureau, your family and friends. It is hard and embarrassing to be honest with extended family and friends, but when you have come to the end of your rope, then they will need to be told. Tell them, in case they can help - especially the little things. This is very true if you are stuck in hospital - most visitors will ask "What can I bring?" Don't be shy to tell them the necessities of coping that you may be missing - that cup of coffee, toothbrush or piza that your child has been nagging you for.

Wednesday, June 9, 2010

Go with the Flow

Once we had stopped reeling from Frances's diagnosis, there was nothing we could do but 'go with the flow'. We had to take each day as it came, because that was the only way to survive the raft of medical procedures, information and Frances's reaction to them. The past was not a viable option and the future had been shattered so the present was all there was. Even at home there were visits from the public nurses, constant checking of temperatures, special bathing procedures, mini meals to prepare and special outings and events to organise.

Along with all this 'busyness', there were always times of waiting and watching, that you had to be prepared for. If there was a procedure scheduled for late morning that required Frances to be 'nil per mouth' for several hours, inevitably it would be postponed until the afternoon and for some reason there would always be a t.v. programme about some delicious food playing on the ward that someone else was watching, so it couldn't be changed. We ended up lugging a large collection of
dvd's around with us and quickly consumed the whole ward library of videos.

Frances wouldn't let me read to her (other people were allowed that privilege), so we ended up watching a lot of t.v. When she was a little better she would play computer games and usually just before she was due to go in for chemo again, she would be well enough to play her imaginary games. We tried to get her to kindy a couple of times, but most of time - she was either too tired and sick, or wasn't allowed to because of neutropenia. Luckily, she has 3 siblings, so lonliness never really set in. When we were in for her bone marrow transfer, it was hard, however, because she was not allowed to see her siblings, but mainly had me for a companion. For a lot of the time in that unit she was even too sick to watch t.v., so she slept and I knitted (I think about 5 scarves in 5 weeks).

Routine had also flown out the window for the rest of the family. We tried to keep as many of the afterschool activities as we could to help maintain a sense of normality but some had to go because there was now only one parent at home. The children adapted (as they do) and everyone has got used to everyday something a little bit different happening.

We still have a lot of 'clinics' to attend - endocrinology and renal have just been added to our list so that every week there seems to be something that we have to take Frances to. Now two years post treatment she has also started having nightmares, so is attending play therapy. She and her siblings have also picked up afterschool activities which are not so worrying to attend.

Life, even in a 'normal' family can appear to be a whirl, but as long as we take a step at a time and find the odd still point or moment for reflection, then we can cope and even enjoy ourselves.

Monday, May 3, 2010

Make the Team Work!

A week or so after Frances was diagnosed, our friends, family and church community had built up a system of support. My parents came in every afternoon so that I could go home and help with the rush hours of homework, dinner and getting the other children to bed. My stepsisters often stayed over on a Friday night and looked after Frances if we were in hospital so that I could go and have a night at home.

One of our friends from school and one from church had organised meals to be left in the big freezer in the garage and people were rostered on to help with the little jobs like gardening, ironing and the bigger job of picking up siblings from schools.

Other parents I know have friends who have organised money raising events and donations that have helped to cover the cost of losing incomes (luckily in New Zealand most medical costs are covered).

We wouldn't have survived without help from our family and friends. It was not just the practical help - knowing that people were thinking and praying for us was a great comfort. Recieving replies from our e-mail tree was like being given drops of water in the desert.

Research has shown that belonging to a larger community than just your family and having a broad social network are important factors in general longevity of life and psychological well-being. The wider communities of support that we find useful were - parent support groups of kids with cancer, kindergarten and school communities of child and sibling, cburch, sport groups and work colleagues.

We quickly learnt to take what was on offer, sometimes whether it was helpful or not. It strengthens the bonds between you and that person or group and helps the offerer to feel as though they are doing their bit. They may not be providing something you need right now but by your graciousness, they might be inspired to provide something very necessary later.

In summary this is what we found worked so that our various teams could help us -

- Ask a family member or friend to coordinate all assistance and to be the 'no' sayer(sometimes you will not want to see anyone - especially if your child or you are very ill or a 'delicate' procedure is taking place, or you just need some space)

- Accept most offers (unless they are really annoying)

- Be specific and concrete with what you need. If someone asks if they can bring a meal or food into you or your child, tell them what you or your child like or need. (a special nod here to all the people who brought in chocolate icemcream and 'Hell' pizza into Frances and salad and fruit into me)

- Be grateful - Ask a friend to be a "Thank you" note writer.

- Inform all visitors and people in your networks of the hygiene requirements that may be necessary before they enter your hospital room or house. We had a notice on our door for months saying "If you have a cold or flu or have been near anyone with chickenpox, please do not enter. Please wash your hands in the bathroom straight away." Sometimes you have to be blunt when it comes to safety and recovery from neutropenia.

- Go international. Join the listservs. Email oeverseas hospitals and organisations.
Get newsletters from international support agencies for your child's specific cancer.

- Reach out. No-one will take your hand if it is not there. Someimes you just have to swallow your pride and ask for help.

Build a Team

As humans we are meant to network socially and share with others the joy and sadness that we experience. There are few people who can tolerate total isolation, without communication from the outside world. Even mountain men and hermits come into town for supplies.

We need a variety of intensity in terms of intimacy. There are those people with whom we can feel that we can totally be ourselves - usually just one to three people - these are our close friends, partners, and occasionally our siblings or parents. There are those friends and family whom we don't tell our every thought and feeling to. We may share with them the odd embarrassing moment, or talk about our dreams and desires, but we are not as open and vulnerable as we are with our most intimate group. There are our work collegues, with whom we have shared experiences and occasionally one of them will be drawn into our 'friends group. Then there are those with whom we have a nodding acquaintance, who we may pass the time of day with but don't socialise.

These onion skins of intimacy and freindship all need to be notified of your child's illness. Their reaction to your child's cancer will be varied and surprising - most in a positive but some in a negative. Some people in your closer circles may become more distant. They may find such news difficult to handle or deal with for a variety of reasons - the word 'cancer' can drag up painful memories and the notion of children having cancer is shocking - it is a reversal of the natural order - we are supposed to fall ill and die before our children not the other way around.

On the other hand there may be acquaintances who would be normally be at the saying "Hello, how are you?" phase, who become angels of kindness and emotional and physical support. Of course you will meet other parents in the wards and clinics, who have children with cancer, with whom you have an immediate repor simply because they, like you have "joined the club that nobody wants to belong to' with whom you can compare consultants, prediagnosis bungles and similarities in protocols. They, along with your partner, are the people who have experienced some of what you are going through and are the most aware of what needs you might have as a parent.

Saturday, March 27, 2010

Greater Knowledge = Better Decisions

Our increasing knowledge of Frances's cancer lead to power and control - we were able to make choices that were more objective and logical rather than based on emotional state - which can be somewhat foggy with darker patches of despair.

We were told by one of the social workers that our part of Frances's healing (or dying) was providing the emotional and spiritual support that she required - this is true, but I also believe that we have to advocate for what is necessary for her physically in terms of the best protocol and its side effects, and to do that, we have to come to grips with all the medical terminology and procedures. That knowledge can ultimately save her life just as the doctor's medical knowledge can.

An excellent example of this is -: during Frances's first neutropenic period she required her first transfusion of full blood and platelets. The full blood went fine but when it came to the platelets - the second they started to enter her body - her face became inflamed and bloated and she started coughing and then having trouble breathing. As soon as the oxygen mask was on, she vomited into it. Her extremities became blue. She had experienced an anaphylactoid reaction to the platelets and from then on I had to remind nurses to give her hydro cortisone and phenargan. Notes go missing, nurses change shifts and forget to note something down, people make mistakes. We, as parents, can be one of the check points so that medical accidents don't happen with our children.

Another place where medical knowledge can help is in the decisions that have to be made about treatment of side effects, pain relief and diet. We will soon have to make a decision about whether Frances has human growth hormone and when. She is very short and already is the receptor of social ostracism because of her height. Growth hormone not only grows bone and muscle - it grows everything. She is only two years out of transplant and we don't want to risk growing anything that might have relapsed or any new cancer. We have some investigating to do!

There will come a time when Frances can contribute to making her own choices about her medical condition and then eventually make all the choices regarding her health. We will then have all this documentation to hand on to her.