How I coped with my child's life threatening illness.

Reminders it is not all doom and gloom: how I managed to survive through my child’s life threatening illness

Sometimes it is hard to ignore all the negative. How do you put aside the fear of losing your child, or even get over the fact that your baby has cancer? Actually most of the time it is not exactly easy but sometimes doable put aside once you get over the initial shock of diagnosis and settle into routines of daily medicines, of doctor and specialists visits, or care routines, play time, and Mamma/Daddy trips to the hospital café for a much needed coffee fix. But you can only bury your fear, grief and anger for so long.

Sometimes it is impossible not to get bogged down in despair, all that worry. You focus on all of the warning and qualifiers the doctors give you. You child will have a 20% chance of surviving her leukaemia, if she can survive the treatment that is. She will be most likely be infertile, have stunted growth, your child may develop organ damage in the future due to the treatment, she may have dental problems. The chemo will cause her hair to fall out, for her to become intolerant of food so she will have to be fed intravenously. She will vomit constantly and have diarrheoa. And the list goes on and on. Some of these things are never get solidified, there is no consistency to them. They are the floating maybe’s and perhaps, they are likelihoods and slim chances. And, of course, they are the hardest ones to stomach.

How’s that big old dose of fear hanging over your head doing? Well it’s hard not to focus on those what if’s; but you must. Because how can you be strong when your bub needs you to be if you are falling apart over what could be? So you shelve it. Yep, shelve that Mother Effer. I’ve been told a bit of denial is quite healthy as long as you confront what fears you have at some stage and not leave them to fester. So shelve those uncontrollable aspects of diagnosis and symptoms. Focus on what you can do, what is fact is happening for your child now.

We got Chloe’s official diagnosis one day after she turned 3 months old. At midnight the night before we were told it was probable.

Chloe’s official diagnosis was in an interview room, which we have come to realise is a sign of serious discussion to come. The head of the oncology department broke the news to us. Chloe had Acute Myeloid Leukaemia or AML, translocative 8-16. It is extremely rare for an infant to have this type of cancer, so rare only one other patient has been treated for in the last ten years in the hospital.

We were told that because it was so rare they were basing her diagnosis on adult outcomes as ones for infants didn’t really exist. So Chloe was given a 1 in 5 chance at surviving her cancer. If she survived the treatment that is.

That pretty much broke us for quite some time, until we realised we couldn’t focus on it, but to just live day to day, never thinking to far ahead. I remember speaking to my parents and telling them as Paul did the same out in a corridor after the meeting. My dad was so very strong and as always in difficult situations he said the right thing. Thanks Dad. And as always Mam I fel t your love and support. I and my husband are blessed with wonderful parents.

I decided that whatever way I was feeling each day, when my wee girl was awake, to her I was simply her happy loving mother. She would never feel my grief, anger and sense of uselessness. She would just feel love and safety in this new world of medical staff, being poked and prodded and hooked up to several medicine and pain pumps through a central line.

I was determined that she feel the safety of her family always, and my husband felt the same. This was all we could do for our girl. To make her day happy and secure in between all of the treatment. To let her know we were always with her, ready to play, feed, cuddle, rock and sing to her so all she felt was as familiar to her as home life. She was 3 months old when she was diagnosed and we have kept the same routines as we always had, working around her treatment and illness. I can say that for the most part she was a relaxed happy child, as she always has been, and now at 11 months she still is. I like to think the calm and familiar loving environment we gave her from the start helped her to be so happy and secure.

This in itself helped. As she was so so young we had a very set and busy routine. She needed lots of sleep. As the treatment wore on she vomited constantly and as mucisitous set in with chemo, causing deep ulcers on her bottom. Nappy changes happened nearly every hour during the day and every 2 hours at night with special gauze spray and cream. Thankfully that is history and we can use some mundane and quite ordinary wipes and cream! Thank goodness for small mercies.
Breastfeeding was happening on demand.

I was nursing her and managed to stay breastfeed for 2.5 months until the exhaustion, stress and demand was too much and I had to give in and go to formula. To be able to sustain Chloe through feeding her was something I drove myself very hard, probably too hard, to do. In my mind this was something important I could do and only I could do as her mother to keep her safe and healthy. Having to stop killed me. I was feeding on demand (which was A LOT!), pumping hard and expressing after each feed and every 2 hours, nearly 24 hours a day. I eventually went on to use prescribed Domperidone and had to give up as I was not producing enough for her needs. I think if she did not have to go on IV nutrition so much and then restart nursing my supply would have maintained better that it was what it was. I tried expressing like a demon while she was on IV nutrition but it wasn’t enough. So that was that.

We switched to formula and cycle 2 of her treatment was a hard one as on top of chemo her gut had been damaged by cycle one and she couldn’t absorb normal formula, it just made her so sick, so we eventually moved to Pepti Junior which is a special formula for malabsorption.

There were so many different factors, complications, bugs and illnesses in her first 2 cycles of chemo that sometimes it was so difficult to remain positive, for Chloe, for me and for my husband. During cycle 1 her double hickman lumen (central IV line) got infected and she was very ill and became septic. She was rushed to theatre and it was removed with no complications. She also developed a small gut obstruction and was vomiting green liquid which was coming from her bowels. This was probably the hardest cycle. Cycle 2 she was better, still very sick with probably 3 weeks of continuous diarrhea, a motion every 45 minutes to one hour. It was tough.

I am so thankful that both myself and Paul were able to stay in with Chloe all of the time, taking turns to go home and sleep and wash all of her soiled clothes. Being together has made this new life so very much easier. We leaned heavily on our families for support though they were in Ireland. We are extremely blessed that we had people from all corners of the world support us. These incredible people supported us in many ways and their support boosted us so much.

My Mum and Paul’s Dad both came over to Auckland as soon as they could and having them made such a big different. They will never know what a positive impact they had just by being here. Unfortunately Paul;'s father had some health issues and needed surgery so he had to get medical help here and then go home. I know he probably feels bad about this but in my mind, Chloe was lucky to get to know him at that time, to meet her Grandad when she was so little. In fact she met a whole host of family as Pauls Mum and his brother came over to bring Paul's Dad home for surgery. I am so happy to write he is happy hale and hearty once more.

In cycle 2 my sister came over from Ireland as well and Chloe met her Godmother. Chloe got to meet so many of her family during this time and it was wonderful. During transplant Paul’s Mum stayed for 2 months and she was amazing. We were so very lucky to have her at this time. She helped with the house, helped wash Chloe’s clothes and supported us in her quiet kind way. Family is so crucial at a time like this and their support can make all of the difference. My sister in law came out during Transplant and was so great to have and a very calm and happy person to be around. My Dad surprised us by coming over with Man before Christmas. I was so glad to have them both here at that time. Everyone that came around the world from Ireland to New Zealand at that time made a huge difference and we will never forget it.
The person I want to thank the most is my Mum. She and I are very very close, she is one of my best friends and she was a solid rock of calm caring and thoughtful words and actions that eased our days and helped us cope. Chloe was vomiting sometimes consistently and as we did not have unlimited amounts of clothes for her Mam did the washing sometimes even twice a day and made sure the clean clothes were back in that day to be used overnight. She cooked wholesome meals and my house will never again be as clean as it was while she was here whizzing around! Apart from the practical things she absorbed a lot of grief, fear and anger from me and my husband that was bottled up during the day. Once I arrived home I would allow myself to think about Chloes condition and my poor Mum was the one that heard it. She was amazing.

And the same goes for friends. I am blessed with having the most supportive and wonderful person  as my close friend out here and she has aided us in so many ways. She set up a Give a Little page to help us financially. She drove our families around, collecting people from airports, driving to and from hospitals, and generally being there when needed. Not only that but she has been there to listen when I went off the rails with worry and grief. I am blessed to have her.

The person we bared our souls too was a professional, a counsellor in the hospital. Honestly talking to someone who has some medical understanding of what is happening to Chloe and a realistic view of how her treatment may go was easier than telling a loved one how sick Chloe was. I sometimes found myself reigning in my fears and anger when I looked at their horror stricken faces or their tears. I just couldn’t unload any more on them and that was when getting counselling was needed. Here I could scream, cry, understand and unwind the jumbled feelings this life threatening illness of Chloe’s had caused. Our counsellor was pretty on to it and challenged us to really face what we were dealing with in a quiet and soft manner. I cannot stress how important being able to speak to her was as I couldn’t and still cannot really speak out loud about Chloe’s cancer.

I found an unlikely outlet in a Mom’s group on social media. I told my girl’s story and kept regular updates on this closed group and the support I received was so uplifting. For quite some time it focussed my mind away from thinking about possibly losing my baby, and it was a godsend. People in the group still ask me how she is and I try to keep them posted with her progression. People all around New Zealand and all around the world were thinking of Chloe, praying for her and sending love her way. I truly believe this helped, even if just to boost our spirits.

And the Give a Little page just took off meaning we could both in fact stay and care for Chloe together. Really being together as a family was the best thing we could do for our own sanity and self support. Our friends, family and even stranger were having mass said in her name, prayer groups prayed for her. I think the kindness of strangers is an incredible balm and we are blessed to have people who care even though they do not know us.

·         So my ways of coping with Chloe’s illness so far include; living in the moment, being totally present and available to Chloe and giving her the love only her Momma can give her.

·         Not thinking too much about the future. Not thinking that we could loose our baby girl to the leukaemia.

·         Speaking out or finding ways to release tension, be that online with strangers, to a therapist, to each other, to family and friends

·         Find something to distract yourself with a parent’s group. I struggled with this as I had already spoken to many parents who had been struggling for a while with their child’s disease. As hard as it may sound I couldn’t bring myself to go to a group during the two cycles of chemo. My husband went to a parent group and he said it was a little negative when he had needed some positive. It was probably a particularly crappy day for someone who needed a vent and unfortunately my hubby went on the wrong day.. Now I wish I had made more of an effort to go to such groups but at the time I could not leave my girl and just wanted to focus on her. Whatever works for you for getting out of the room, going for coffee, the gym, organising finances, anything that can take your mind off of what is happening is sometimes a very welcome release.

 At the beginning of treatment this was rather impossible as everything was too fresh and raw, but both myself and Paul decided as early on as we could to remain positive, to be grateful that we have our fabulous daughter Chloe, that she is still here, and we are doing what we can to help her and putting trust in the professionals who care for her.

·         One massive thing I DID NOT do was google. Seriously don’t do it! Sure you may find some reputable sites where you will gain some sound knowledge on a symptom or side affect but in most cases you will just get horror stories and worst case scenarios. And believe me you can do with out that shit.

·         Get up in the morning and brush your hair. Seriously this helped me out and made me feel normal. If you are not up to a shower, or don’t feel like putting some mascara on, just brush your damn hair. Something menial, some mind numbing normal is needed in order to face what may be ahead.

·         Oh, and coffee. Lots and lots of coffee.. 

    Don’t be afraid to ask for help. It is the help from others in whatever form you feel comfortable with is what can get you through.

Bless you and I hope my experience can help you through whatever scary situation you and your loved one are in.

Jo xxx