A Grandparent's Special Journey
28 Nov 2011
The part grandparents play during a child cancer journey isn't often acknowledged, and yet grandparents juggle difficult and complex roles. Dunedin's Lynne Robins kindly agreed to share her story.
My partner Des and I had a very special bond with our first born grandchild and spent a lot of time with him. Our gorgeous grandson Phoenix was diagnosed with Leukaemia (ALL) in June 2007, he had just had his second birthday and had welcomed his little sister into the world. Phoenix underwent treatment for the next three and a half years.
I shared Phoenix's journey with friends and family through an email diary which still brings back all those feelings of being so scared, even now.
Phoenix had a rash, he wasn't eating and his gums would bleed when he cleaned his teeth. He was very lethargic and was a really sick wee man. He would get up early in the morning and wait on the sofa for Kim (his Mum) to get up.
The Doctor didn't know what was wrong with Phoenix and after a few visits, suggested he be taken to hospital. I will never forget the call I received from Troy (his Dad) asking me to pick up Kim and go to the hospital. Nothing could have prepared us for the news we were told. Phoenix's platelet level should have been over 250, it was 8. The Doctors didn't know how he was walking.
I spent the first night in ICU in Dunedin Hospital with Phoenix to allow his parents to go home and prepare for the journey to Christchurch the following day, I tried to be brave and comfort him. Every so often he would wake up and say to me "Nona take me home Nona's house, take me Nona's car." He would reach up and I would gently lift him out of bed and cuddle him carefully (as it hurt, he had no cushioning on his bones).
He would wrap his wee arms around my neck and cling on to me. I held him as long as I could before I was told to put him back in bed. Little did I know I wouldn't get to cuddle him for some time as his poor wee body was too sore and wouldn't be able to take it.
I honestly can't describe how scared I was. I tried to be brave for Kim and Troy but I felt hollow inside, how could this happen to Phoenix, our darling wee man.
We saw our role as providing as much help and support as we possibly could for the whole family. I would liaise with Troy's work and try and provide as many breaks as I could by travelling to Christchurch every opportunity I had and staying with Phoenix in the hospital. We watched the movie Cars about a thousand times, Des and I sometimes shared the single pull out sofa which was fun and when Phoenix was on steroids, we would be up getting biscuits etc all night long.
Phoenix hadn't laughed. I remember the day he first laughed again. It was infectious; it was a sound we hadn't heard for a long time. We all shared in the laughter and did stupid things just to keep that sound going.
One of the hardest things I found was leaving Phoenix and returning back to Dunedin. He loved stars and the moon so I would tell him that when the stars came out, they were Nona's kisses being sent. He would say yep.
When he finally arrived home I remember the first time we took him for treatment and holding him while they accessed porty. He screamed and cried, it just broke our hearts.
We watched Phoenix's journey through the three and a half years, we experienced the terror whenever he got sick and how scared we felt and we watched him get so skinny and being fed by a tube, then bloating up with steroids. Being a grandparent is like having another child of your own but hard as you can't make decisions. You can only give them the absolute love they need and worry and help their parents as much as you can while feeling helpless because you can't take away their pain.
We are an incredibly close family and I had wonderful support from friends and family and especially Des and my daughter Emma. Emma adored her nephew and provided invaluable support for her brother and sister in law staying in hospital, travelling to Christchurch for the overnight trips and helping with Phoenix’s sister Amelia, providing invaluable support.
Phoenix has been out of treatment for nearly a year and is doing so well. Since the chemo stopped, he has grown so much. My heart broke when he saw all the things Amelia did at kindy and said to Kim "Mum I didn't go to kindy did I?" She replied "No, you were very sick Phoenix" and he said "I just want to have fun." He loves school now and enjoys reading and just being a boy. It's been exciting watching him eating again, regaining taste buds and trying things he used to love. He is an absolute joy and we are so grateful to have our little boy well again.
Des and I are now the Chair and Secretary of the Dunedin Branch of CCF. We chose to be on the committee to pay back. We saw all the help they gave the family, the support they needed. The stress of having a child with cancer has the ability to tear a family apart, our CCF Family Support Coordinator Christine Donovan provided so much help and support and we were so grateful that we wanted to be part of helping other families.
A grandparent's journey is hard. We were fortunate that Troy and Kim involved us and kept us informed as to what was going on. We gained knowledge of treatments and words we had never heard of before. Please if you are a grandparent, know that you are not alone and your pain is very real.
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