When Survivors Grow Up: Family Experiences After Retinoblastoma
Monday September 30, 2019
Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.
Flamingo and zebra on Lake Magadi in Ngorongoro Conservation Area, Tanzania. I chose this photo because both the zebra and flamingo represent strength in community through traditional storytelling. The zebra celebrates all who endure tough times and come together for mutual protection, nurturing and to overcome. A predator cannot pick out a single zebra when stripes merge as they stand together. Flamingos symbolize grace, balance, emotional awareness and resourcefulness. Traditional storytelling focuses on lively communal gatherings and honest communication to destress and create a shared sense of joy, peace and freedom.
Several years ago, I was discussing family planning with my mother, and the possibility of having a baby with an RB1 mutation. She told me that had genetic testing been available when she was pregnant with me, and had she known then what she knows now about the cancer and its effects, she would have terminated the pregnancy.
I was utterly shattered by her words. But what shocked me more was the response from fellow survivors when I shared about this exchange. Discovering other survivors have experienced similar conversations with their parents disturbs me greatly. Far from giving me comfort that I am not alone in this pain, an unease has grown louder within me about the depth of pain parents must carry to drive such feelings and statements.
I have very gently dug deeper with my mother over many fractured conversations, trying to understand what motivated her words. I cannot accept that she would have preferred I literally not exist – that is too isolating and crushing a notion to fathom. I think she wanted to say that what she experienced was overwhelmingly difficult. That it’s still with her every time something related to Rb arises, and she doesn’t know what to do with all those thoughts and emotions. Perhaps she meant to say “if you hadn’t had Rb, I would be without all this trauma in my heart and mind that I can’t explain or express or manage, and I wish that freedom for you. I would have done anything to prevent us both experiencing all the pain we have”.
If no one ever acknowledges that emotional trauma is a real lifelong experience for parents, is willing to bear witness to it or talk about it, why would a parent ever feel their emotions are legitimate, that they have a right to feel what they feel? It’s hardly surprising emotions are suppressed, only to manifest in ugly words and behaviours towards the retinoblastoma survivor when the fearful prospect arises of a grandchild and another round with the cancer.
My personal experience planted the seeds for this blog. I wanted to create a space where parents, grandparents and survivors could safely and anonymously share retinoblastoma related experiences that impact their lifelong wellbeing and family dynamics, things that are little discussed in our community.
Each of the 19 contributions below highlight something different. I include them with minimal editing to retain the important lived experience and message. So this article runs significantly longer than our average.
We begin with the perspective of a parent and grandparents from the time of treatment, progressing through adolescent years, and on to second cancer risk. Recurring themes include the importance of family and relationship support beginning during treatment, and continuing long after cure, the value of connection and peer support with other Rb affected families, the trauma and grief all family members carry, guilt in various forms, the need for second cancer risk management and support, and bereavement when living with a familial RB1 mutation. Some contributors describe what may have helped them.
Retinoblastoma survival is very high in the developed world. However, my family’s experience and these varied experiences shared below clearly illustrate that lifelong impacts are significant. This diverges from the limited research into psychosocial outcomes among survivors and parents, which broadly concludes that childhood eye cancer has no significant negative psychosocial impacts.
My deep gratitude to everyone who has contributed and made this article such a rich and valuable learning resource. I hope it will help to inspire and guide effective family/survivor-led research into lifelong coping and quality of life. And I hope it will become a foundation from which we can grow more compassionate support to meet diverse lifelong needs of the whole family.
Child Life Specialist, Jayne Kamau, and assistant, Martha Mwongela, lead a parents support session during the Kenya National Retinoblastoma Strategy Meeting in Eldoret, Kenya, 2013.
Support During Treatment
About 6 months into our daughter’s treatments, I asked my wife why the eye was swollen after treatment, and why we weren’t doing more to help it – it looked awful painful. She flashed me a look of complete frustration and fatigue in response. It was so brief before she patiently explained that I could have convinced myself I didn’t see it. But I have never forgotten that look or how inadequate I felt in that moment.
My job (the insurance carrier) involved a lot of travel at the time. Not only did I fail to join my family at the hospital on most admissions, I also often left extended family to support my wife for days. I know that I was doing what we needed to ensure our daughter had the best care, but I Was Not There. I was not part of conversations with the doctors, I did not know the nurses or the other people to whom we entrusted our child. The night I asked that question, I sat in my car in the garage for hours with a headful of marauding thoughts. That is a defining memory of my experience with retinoblastoma.
I never let my emotions show in front of my wife and children during that time. I felt an intense need to reassure them that our life was normal and the husband/father they trusted was in control. My wife already seemed lost in the chaos, and I was sure my pain would magnify hers.
We finally talked about it all a decade later, during family counselling, when both our children were struggling with the detritus of their experiences, and our marriage hung in the balance. We realized we had been operating in two parallel bubbles with the same mentality. We were so afraid to speak of our feelings, believing we were being strong to protect the other. When in fact our silence deepened the sense of isolation and failure on both sides.
I wish we’d had support at the time of treatment, some kind of advice on relationships and communication between parents to handle and share emotions well. Maybe parent socials or groups where it would have felt less intimidating to say how we felt in a way the other could hear, rather than clumsily trying to find those heavy words in the privacy of our home, where our fear of cancer was all-consuming in those most difficult days.
Parents, children, friends, and extended family members gather for a group photo at the California Rb Family Day, hosted by WE C Hope in August 2019.
A Grandparent’s Perspective
We have seen our daughter make decisions no mother should have to make about treatment plans. We were her sounding board. We all prayed night and day. Some moments are burned in my heart, like when the doctor gave the diagnosis of bilateral retinoblastoma. I asked if this cancer would take our grandson, our sweet baby. The day the doctor said despite all the treatments, the right eye had to be enucleated, and the day his eye was removed. Most grandmothers might have the memory of a badly skinned knee or tonsillectomy, instead of these nightmares. My joys do far outweigh the terrible fears; RB has made me appreciate them all the more.
A grandmother’s agony is twofold as you watch your own baby cradling her baby who is going through such physical pain. Our faith in God keeps us going. The love and support of family and friends has been a blessing we give thanks for each day.
We were there for all the appointments and procedures, so we heard what my daughter heard. I have always kept a notebook to write down what the doctor says. It helps because we don’t get written pamphlets to take home for the majority of visits where new medical terms are used. Time with the doctor is usually much too short and you are processing emotionally what they are telling you, so I wish there had been written information.
We were always going to the internet to try and understand what procedures were. Maybe doctors think too much in depth information is not needed.
I wish we were given more examples of hope and survivors. Oh how we needed that. No two RB journeys are the same, but there is so much hope to hold onto.
I also wish medical professionals would understand the impact of RB on siblings. You’re so caught up in getting through treatments and supporting the RB child. The sibling is seeing so much and hearing so much that they don’t understand. I remember a day when his sibling asked if he could have a special eye (prosthetic) too.
There is always the medical journey, but there is also the emotional journey.
I have an almost four year old grandson, my daughter’s son and the only child – my only grandchild. Oh the things I have learned through this cancer journey. Walking by my sweet daughter, son in law and grandson will be lessons greater and deeper than I have ever experienced so far in my life.
As a parent to the parents, I KNOW my role is to support my own child to keep her strength firm and trust that she knows what decisions are best for her child. To stay consistent, be present, ask them what their needs are, figure them out and just do them. To love on them all, to control myself and try not to lose it when I feel weak in front of them. Multiple times I have come home in the midst of the storm and cried the ugly cry.
Grandparents make sacrifices. You just surrender to it, understand it and rise to what needs to be done for the love of your family.
My grandson has had three reoccurrences. Currently he walks in a very cautious time.
Multiple times I have had to keep my feelings to myself in this journey and remind myself that what’s happening is not about me, it’s about what my baby is going through with her baby. There have been countless moments of depression and hidden tears. Moments I’ve bitten my tongue because it’s an invitation to go to the hospital, we are not entitled to go. I understand I’m privileged to walk by my daughter’s side and I wouldn’t want anyone else to be there in my place. My baby needs me as much as my grandson needs his mama through laser treatments, chemo, EUA etc. I have to keep moving forward. I must be stronger then she realizes I actually am.
I was the first person in our family to develop retinoblastoma. Two of my three children also inherited the cancer from me. When my first grandchild was diagnosed, I think I was calmer than when my children were diagnosed. Perhaps because I had more life experience. I had always thought I’d feel more guilty about my grandchild having the same cancer as me and my children, but strangely, my son and his wife choosing to make a family with full knowledge of the risks helped relieve some of that guilt. As though they were telling me “we understand how it was for you, and it’s ok”.
But I found the treatment side harder because I was more present as a retired grandparent than I had been as a younger working parent. Saw more first-hand of how hard it was and the immediate effects. It also seemed more complicated and burdensome than the choices my wife and I had been given 28 years before. Those long days at the hospital gave my son, daughter-in-law and me opportunity to talk about the cancer and our lives in a way we hadn’t done before. I think my wife had a much harder time accepting the diagnosis, but coped better with the practicalities of treatment, probably because she was primary carer for our children during treatment.
Three generations walk together through another hospital visit.
Childhood and Adolescence
Life has been quite rough, and I’d say it all comes back to retinoblastoma. In elementary school, my brother and I were the only kids with bad sight. We lived in a small town and the school for blind children meant living away from home, which our parents refused. We had a helper/teacher who divided time between our different classes. We were also removed from class to learn orientation and mobility skills and so on.
I was bullied a lot throughout my entire school life. From name-calling to being excluded from games, to having schoolwork stolen and destroyed, to threats and occasional physical violence. I had so many emotions about it, but at the time, I couldn’t understand or explain them, and no one ever actually asked me how I felt – even when we talked about the bullying during parent-teacher meetings.
I was tired all the time. My head hurt, my eye hurt, my neck hurt. And I became more and more isolated, unable to make or maintain friends. I think I was a very difficult teenager to live with. It’s hard to respect the people around you when you don’t respect or love yourself. I felt like a terrible failure because my brother seemed to have his lot together very well. I was angry with him too because he’s supposed to protect his little sister, but he ignored me. Maybe he was just glad he wasn’t being bullied.
I didn’t make it easy on my family at all. I know my parents wanted to help, but I couldn’t find the courage or the words to tell them what I was experiencing. I wonder now if I was afraid that they’d send me away for school after all. I wish I’d had friends who had Rb that I could have talked to, hung out with. Maybe we would have understood each other and I would have worried less about my parents’ response. Maybe my brother and I would have talked about the important things, instead of learning to resent one another.
I am the only member of my family to have retinoblastoma. At the time of my birth, five generations were alive, and I knew both my great and great-great grandparents, so RB came as a shock to many. I was 2.5 years old when diagnosed, and my mother was pregnant. She asked the doctors if my family could wait until after my sister was delivered before taking on the challenges of my surgery. They were told if they waited, I would not survive. I think that impacted my mother more than we realize. She has shared that it was a very stressful time in her marriage to my father. Although they came through it and are together today, there were no resources to help a young, growing family navigate such unexpected hurdles. Unfortunately, the same is true today, based on where one lives.
Although I was a happy child, I was also a very sad child. I wondered constantly why I was chosen to have RB; I hated looking different, being made fun of; having people feel sorry for me, etc. At times, I felt more comfortable being by myself. My fifth grade teacher raised that with my parents: she said I was a “loner” and everyone perceived that as a negative. Never, it seems, was thought given to how the early trauma I experienced had shaped my world view.
Counseling is important and probably something I could still benefit from. I think I have spent so long trying to convince myself I am ok as a survivor that I’ve not given myself permission to seek counseling just about my RB and the pain I still carry. Many see me as very poised, self-confident, and polished. It’s a coping act, I think, to constantly hide the fact that I wonder what people think/observe when they see me.
The One Rb World conference in Washington, DC was such an affirming experience. I wish there were more frequent opportunities for us to get together and learn from each other. That was an awesome way for us as survivors, parents, children, etc., to know that although it may feel that way, we are not alone. If as a child, I had known there were so many more going through what I was – if my parents and siblings knew that, I wonder if there would be less guilt and fear.
I just called St Jude for psychological help for my 12 year old. He is voicing occasional hopelessness. His Primary Care Provider waved it off as typical adolescent behavior. I feel lost as a parent to help him navigate these teenage years, being different than his peers.
Lack of support left me feeling inadequate and guilty. As a mother, I felt unable to fully understand and support the children as they were growing up, through fear of entering into conversation that might lead to questions I could not answer because I had no clue about cancer.
Increasing violence and anger towards me, and unwillingness to talk to me (the non-RB parent) went from bad to worse. That resulted in a mutual lack of trust and inability to have an in-depth conversation, even to this day.
There was no support available at that time, and my husband (Rb survivor) was unwilling to talk to me about anything connected with RB and the impact this might have on our adolescent children. I thought family therapy might help. The four of us attended the first session, but only my older daughter and I answered the questions. Both my husband and youngest daughter remained silent throughout. Even when asked for their own views and comments. The next day, the psychologist said she could not carry on.as she felt two members of the family were not prepared to open up and participate. She had no alternative suggestions.
My husband developed a second cancer. We finally discussed this during many conversations in hospice care. He said he always regretted not carrying on with family therapy, but without the support of other RB parents, he felt unable to talk with me about issues that pained me a lot. He thought I could not understand and I would be very upset. I may be wrong, but I think he blamed himself for having passed on the mutation and the cancer.
My RBer seems to have coped relatively well with the experience of cancer. It’s actually our non-RB child who has struggled the most. 4 weeks premature and just 2 months old when the diagnosis came, our baby’s first 6 months were surrounded by high stress and anxiety in our home, lack of a consistent routine, and far less attention than I wanted to give. We were lucky that treatment, once agreed, was uncomplicated and successful. We moved quickly into regular EUAs and we only had 2 small relapses that were quickly treated with cryotherapy. But those several years of surveillance were still very stressful for us all.
Our youngest has always had more difficulty expressing thoughts and emotions, and dealing with any kind of dramatic change or uncertainty. For example, her beloved sixth Grade teacher went on medical leave part-way through the school year due to a cancer diagnosis, replaced by a series of supply teachers. That year had already brought many changes with new classes and teachers, and the loss of familiarity seemed to unbalance her no end. She became more distant and impulsive. She was more easily tearful, but when we tried to talk, we were always met with an aggressively impenetrable wall.
Things have settled down a lot. Both our kids are wonderful, loving and caring. But we do worry that our youngest especially carries a lot of dark energy, finds it difficult to cope with anything that threatens the carefully established order, and would rather ignore anything potentially serious and frightening that could bring personal harm. We worry that while our RBer has grown up to be a strong self-advocate for health care, our youngest has grown up learning to run in the opposite direction, that while our RBer has survivor supports and embraces this experience, our non-RB child is suffering most.
Childhood cancer or Rb support organizations should host events specifically for parents and their adolescent children. I broached the subject at the time we needed help, but was told the support offered was aimed at parents of newly diagnosed children, and not enough was known about the effects of RB on adolescents.
I had in mind a weekend format including discussion groups for teenagers – both on their own, and with their Rb affected parent. As well as groups for RB-affected parents and for non RB parents. Bringing everyone back together to hear the findings of each group. Once all concerns are out in the open, plans should be made to tackle specific topics together at a later date, sooner rather than later. That could include holding further specific group sessions as needed. I have no doubt that after the first session, both RB and non-RB parents would find it easier to open up and be honest with each other, and find a way of helping their adolescent children.
Teen survivors of retinoblastoma and their siblings enjoy a game of volleyball during Rb Week at Camp Sunshine in 2019. WE C Hope USA sponsored two families to attend.
A Parent’s Life Beyond Retinoblastoma
My son had both eyes removed. I know on a logical, scientific level that was necessary to save his life, and we did all we could to save his sight. But I still feel guilty that it happened, that we couldn’t do more, or we didn’t find the cancer earlier. And I grieve for his lost sight, for the beautiful baby blues that looked up at me with so much trust, before cancer. I grieve for his lost hearing every day we put in his hearing aid, an effect of chemotherapy. I grieve for the impact his sight loss and reduced hearing may have on his future independence, on his life choices and the things he might otherwise have done, without cancer. I grieve the loss of innocence for all my children, for their years of lost childhood, trust and security. I grieve my lost dreams of an idyllic family life raising baby. Life is good, we have our son, and we are together – it could be so much worse. But we live with the effects and the losses every day. That is so hard to carry and to explain to people.
We went through every treatment going, on and off, for eight years. It felt like every aspect of that cancer experience eventually became a part of me. Including the constant worry that hangs around you like an invisible cloak. It’s so present, there are times I think it must shimmer when I move!
I can’t remember the woman I was before cancer placed that permanent shroud of anxiety around me. During treatment we worried about fevers and infections and side effects. After treatment, we worried about relapse, the need for more treatment, and the dwindling treatment options with every relapse. We continued to worry about fevers, even when we had no reason to worry any more – that’s how we were trained to behave by the oncology team. Later, we worried about side effects of radiotherapy, and now we worry about second cancers. We worried about our ability to have more children without retinoblastoma. We worried about people’s reactions. We worried about paying the bills. We worried about the questions our child and other people would ask us. Some days I seemed to breathe worry from the moment I woke up until I lay down to sleep – while appearing to all around me to function normally.
When I don’t feel anxious about something to do with my child’s cancer, I feel uneasy, that I’m being too complacent, letting my guard down. I’ve been a “momcologist” for all these years, I should be doing or thinking something. If I’m not, am I being a good advocate? If something happens and I miss it or didn’t act on it soon enough, it will be my fault. I know this isn’t rational or a healthy way to exist, but my child has a lifetime risk of second cancers and other health issues, and I know the doctors won’t be watching all the time. So it’s down to me. If I’m always on alert, I’ll be ready if unexplained symptoms occur, and maybe it won’t be such a trauma or shock. But I hate the way this makes me feel too, and I’m sure my anxiety makes my child anxious too, which of course just makes me feel worse.
I wish I could relax and be confident to step back as the teenage years approach. I wish I knew how to detox from the momcologist mentality engrained in me through years of treatment. No one tells you how to disengage and transition back to a “normal” mom of a cancer-free kid when you reach a point of sustained remission.
I still grieve for the woman I was before retinoblastoma. I was carefree, laughed all the time. I had big dreams of adventure with my babies – I would be the best fun mom – but definitely not “stay-at-home”! My husband and I planned to travel far and wide with our kids before they were in school – they would grow up experiencing first-hand our vast country and amazing world.
Then a stranger spoke five words to me that changed my entire life – your daughter has eye cancer. For four years, instead of traveling the world, my entire world became getting my little girl through treatment that, God Willing, would save some of her sight and keep her alive. Everything was for her. I put myself on hold so I could function entirely for my children.
As I poured myself into my daughter’s care, I could feel a cavern of grief cracking open inside me, but it was far too dangerous to look over the edge while I needed to stay balanced during those uncertain times. So I did what I had to do. And years later, when I stood still on the edge of that cavern, and looked down into that river of grief below, I didn’t recognize the woman reflected back.
Anxious, serious, living one day at a time…sometimes just five minutes at a time. No more big dreams or flamboyant plans. I didn’t see that happening. No one called me out on it or helped me keep myself alive through everything.
I feel like my daughter’s cancer killed part of me. But how do I say that without sounding utterly self-absorbed? How do I say that without burdening her with a guilt that is not hers to carry? Is the real me still there somewhere, under all the grief, and if so, how do I get her back after so long?
I consider myself a very well-adjusted woman. I’ve come through cancer with my family – twice – and they’re good kids, my husband and I have a strong marriage, and I have a successful career. But sometimes, something happens to send me in an instant right back to those heady days of constant hospital visits, treatment and uncertainty. I go into a tailspin that I can’t explain to anyone, and extracting myself from it takes so much energy. Often the causes are unexpected, and that I find to be very hard – the unpredictability of it all.
For example, my son recently borrowed my car for the first time. The next day, I found a pack of antibacterial hand wipes in the compartment between the front seats – the same brand we used the whole time my daughter was in treatment. That impacted me so much, the brand, their placement where I always stored them so everyone could reach them. But mostly it was the fact that years later, my son buys wet wipes (and this brand in particular). 17 year old boys don’t usually think about things like this.
On the one hand, this is good life-learning. But I feel so sad that he had to learn in this way, that his innocence and part of his normal childhood was erased by his sister’s cancer. This one small find set me on a cascade of memories and thoughts for days. I eventually reached the end of a chain and set it aside, but it never really goes away. It’s always waiting to be noticed again, to take me for a wild spin when I least expect it.
My husband and I attended a gala fundraiser last year. We were seated at the same table as a mother who lost her child to retinoblastoma several years before. We knew one another well, our children spent many days together on the oncology floor. I like this mama very much. She’s quiet, gracious, friendly, and full of love for other little ones and their families in crisis. But that evening, I felt awkward and overwhelmed around her.
This was the first time we had been in close proximity for an extended time since the funeral, and I felt a crushing sense of shame and guilt that completely paralyzed me. Especially as conversation flowed around the table about our personal experiences with cancer. Once our lives ran together in mutual hope and battle for our kiddos. Now ours is full of our child’s healthy living, and hers is driven by keeping memories alive.
Why did my child survive retinoblastoma – such a curable cancer, when her child did not? How can I delight in hugging and raising my child, knowing that she will never have those gifts? I had thought of this mama at some point almost every day for more than two years, but I couldn’t pick up the phone to talk with her or send a message. Why not? I think maybe because her reality is my deepest, darkest fear. The fear that keeps me awake at night. No matter how many times the doctors say relapse is a remote risk now, we have second cancers to watch for, and that will always be with us.
I realized that evening that I also carry a grief for this family, for a little child lost, for friendship on hold, maybe also lost. Grief that I I’m not sure I have the right to own because I still have my child. And I feel guilty that I have my child and they do not, and ashamed that I could not step over my own fear to hold their hands in their loss. The memory of their child will always be with me.
Living With the Second Cancer Risk and Reality
My daughter was diagnosed with leiomyosarcoma aged 32. She’d recently moved out of state with her husband and their two kids. That first week was a desperate time while I waited for news, tried to stay calm and juggled my own life so I could fly out to be with her and help with the kids. I felt so far away and helpless.
The shoe I had been waiting to drop for 31 years had finally crashed through the ceiling and clobbered me hard. I thought that being aware would help if this happened, but when it did, I was totally unprepared for the reality.
I attended a few hospital appointments with her, but she was now an adult, in control of her own care and decisions. Our power dynamic had changed dramatically. On my second day in town, she politely, but very firmly told me to step outside when the doctor walked into her room. I was mortified, but on reflection, I realized I had talked to her doctors like she was still five years old. As that realization hit me, I sat in the hallway and cried the tears I’d been holding in since her first phone call 10 days before.
A man came to sit beside me, introduced himself as a hospital chaplaincy volunteer. He handed me a card and said he’d be available if I needed to talk, whenever I was ready. He then asked “Can I help right now? What do you need?” That was the most precious thing. I needed to not feel alone in that hallway. I had flown out in fear for my child with cancer, who had just thrown me out of her room. Admittedly with good reason, but it still felt like I was being pushed away, and sitting alone made me feel exposed as a failing parent. So I asked him to just sit with me, which he did, very quietly.
Sometimes, we’re so afraid of the silence, or so sure we have to say something to make the situation better. We say things like “God doesn’t give us any more than we can cope with”, or “Everything has a purpose” or “It will be OK”. I heard that last one a lot in the week after the diagnosis, as the news spread through our small community. But it wasn’t OK, my baby had cancer – again! And maybe she wouldn’t be cured this time. Who can ever say it will be OK?
I was angry and scared and overwhelmed. I was confused and trying to find my feet. I needed people to acknowledge that, to allow me to express it and let that be OK. I wanted my intense feelings to be validated. I wanted to be assured I wasn’t losing my mind, overreacting or failing my child by being too involved – or not involved enough.
That gentleman’s compassion in the hallway gave me permission to ask for what I needed. His silence as we waited together gave me space to speak honestly and find ways to be with my daughter as a supportive mother.
I give thanks every day that my daughter is still here, that we are together, waiting for consultations and test results, that I can now sit in hallways and understand her need for privacy in those conversations. I am grateful for this life, even as I struggle with the knowledge that there will always be something cancer-related for us to navigate in life.
My husband and son both have the RB1 mutation. I worry every time one of them gets a bruise, lump or ache they can’t explain – which is at least once a month. I know of course that not every ailment is cancer. My son is a rambunctious kid, my husband is blind in one eye. They knock themselves about every day, and the aches, pains and myriad other symptoms I lose sleep over could be any number of perfectly normal, boring and harmless things. But cancer is a real risk. If I take it for granted that they will be fine, I fear that one day cancer will bite too hard, and we may not recover.
A swelling under the chin when my youngest daughter was 14 years old remains unresolved. The GP said it was a root abscess, but the dentist said it had nothing to do with the teeth. The oncologist had nothing to say. The swelling subsided about a week later, and to my knowledge has not been a problem since. At the time, it caused me so much worry. I knew my children faced a lifelong risk of second cancers, and I felt no one acknowledged the concern or emotion that stirred up.
I lost my wife to retinoblastoma. In practicality, to a second cancer, but effectively to retinoblastoma. I want the doctors to acknowledge this. Rb kills. Yes, it is second cancers, but it is the RB1 syndrome at the heart of the matter. Maybe if they acknowledge this fully, they will do more as a medical community to take closer care of survivors after the eye-focused treatment. Maybe they will understand how Rb impacts our families for life, that it never ends for those of us dealing with an RB1 mutation.
When my wife died, I had to face the horrific reality that my child may also die before me, that I may have to plan the funerals for two of the greatest loves of my life. My wife and I never really talked about how Rb stayed with us and our children, until the last weeks of her life. Things we both wished we had not left until the end. She apologized endlessly for leaving me to “deal with it” (the effects of Rb) on my own when she had “caused” it all. I reminded her that we created our children together, in love, and I will never regret being their father or her husband. I don’t know that it was enough to cut through the intense guilt she carried.
I have always treasured every moment with each of my children, knowing the gifts they are, that those we love can be gone in a heartbeat. But now, I savor the tiny interactions of daily life even more, because it is those moments I miss most with my wife. I’m greedy for time with my children, but as they grow into young adults, I’m wary of being too present in their lives, too possessive. It’s a fine line to walk.
My kids are in college or soon heading that way. They have great plans and I’m so proud and excited for each of them. I want them to have the world, but if I don’t look too far ahead, maybe my heart won’t crumble if Rb strikes us again. Sometimes I feel I’m already grieving for a loss that hasn’t even happened, that I betray my child and my wife by not believing 100% in a healthy future. But every day I wake up without my wife, I know the potential reality.
I’m more anxious for my children’s wellbeing. Their mother took on most of the caregiving and I’m still figuring it out, especially with my Rb survivor. I know my teenager worries about causing me more worry, and doesn’t share some things with me as a result. And I worry that lack of conversation will cause us to miss something important. I hope we’ve done enough to ensure my child is a strong self-advocate. It’s exhausting and lonely being the parent of an adult Rb survivor, especially when your soulmate has already been taken by the same cancer syndrome.
Family Planning With an RB1 Mutation
We planned a big family, maybe because we both had no siblings. We wanted a busy, full home. Even before we were married, we had visions of how life would be as first-time parents. But when that experience came, it was so fleeting, I look back and I’m not sure it was even my own or part of my imagined life.
Our baby was diagnosed at 7 weeks old. Followed by 4 years of treatments, EUAs, relapse, enucleation, more treatment, and more EUAs. During that time. We couldn’t think about having more children. Financially, we couldn’t afford another child with all the medical bills, but the genetics terrified us more than anything else – how would we do this with two children? How would we explain to another affected child years later that we knew the risk and took it anyway?
10 years on from that time, our feelings have changed. We understand more, especially about the genetics, the risks of another child being affected, and the benefits of very early diagnosis. But my biology has moved on too. We have options to expand our family, but none of them are simple or easy.
I am thankful beyond words that I have one child, now cancer-free and thriving. But still I ache for the children we haven’t had, for the siblings my child may never play with or bicker with. I mourn the lost experience of raising a happy, healthy first child from birth to preschool.
Sometimes, when I see friends posting on social media of their big families, or I pass new moms in the street, a fury rises in my gut like a hot poker. A rage against the cancer that stoked our fear and killed our dream, at myself for not taking the chance while we had it, at the void where there could have been information and support to help us figure out these big life questions right when we needed to know, before time ran out, before we understood the questions we should be asking.
I lost my sight to bilateral retinoblastoma. As I grew up, I learned that my mutation could be passed on to the next generation, and while that worried me, I could never accept the idea of not being a mother, not having my own children. My husband and I were delighted when we became pregnant with our first child, and were so excited to tell our families. But when I told my parents, they were horrified. My mother told me right in that conversation that I should terminate my pregnancy, as she would have done if she had known about my Rb when she was pregnant with me. I was so shocked. She’d expressed her discontent about my being a mother before, but she never put her feelings in such direct terms.
That one exchange has caused indescribable pain and grief that remains today. It caused me to question myself, my choices, whether my mother ever loved me that she would tell me she could throw me away so easily. I questioned my right and ability to be a good mother. I couldn’t talk with her until long after the birth. I lost connection with her at the very time I hoped I could turn to her for advice and support. All of that ruined my ability to enjoy my pregnancy. It made me anxious where there had been no anxiety.
Reflecting on my own experience with my child’s Rb journey, I think I understand my mother more. Our experiences have been very different in that I knew a reasonable amount about Rb and its treatments before the diagnosis, and there was good support at the hospital and from different organizations – my mother has commented often about things: “I wish this had existed when you were little”. But we carry a lot in our heart that is the same. Maybe if my mother had been given the support she needed when I was young – and maybe even when we were planning our family, the things she wanted to tell me would have been said more easily, compassionately, and accurately.