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What I wish I Knew at Diagnosis

The amount of wisdom that comes from a parent who has travelled the path of pediatric cancer is unparalleled. Allow me to share some of the wisdom I learned from other parents and what are my top things I wish I knew upon receiving a pediatric cancer diagnosis. I could share a million and one things, but for the sake of space, I will share just a few in this post.

1. Join a Community

Join a community that is specific to your child’s diagnosis. My Child had Rhabdomyosarcoma, so I found a group specifically for Rhabdomyosarcoma. The value in joining this type of group is a double edged sword. You are joining a community with other parents who have a child battling cancer. Unfortunately, you quickly have the veil removed from your eyes and you become VERY aware of the tragedy of cancer and that not all children survive cancer. Sometimes it feels like you are hearing news every day on social media that another sweet and innocent child has been lost to childhood cancer. And frankly, it can be difficult to protect your faith and/or hope that your child will survive. Even the most hopeful of parents has a moment where they think “What if my child doesn’t make it?” But in these groups, you are able to ask very specific treatment and or side effect questions.

Our team of childhood oncologists are great, but the power of the wisdom in a group of parents who have dedicated their lives to helping their child survive through an incredible amount of research and life experience could make some of these parents earn an “honorary” doctoral degree.

Through the parents in said groups, I have learned of medications for nausea and pain management, the normal side effects of treatment, when to follow my instinct or seek medical attention and what specialists might be good to add to my child’s team. They have been instrumental to talking me off the ledge when my anxiety feels like it’s about to blow through the roof.

The downside is you are exposed to a significant amount of grieving, so if it becomes too overwhelming, then removing yourself from these groups is good self care. But if you are able to keep the balance in your mind, then groups are invaluable resources!

Another great group to join is Momcology.

And a new online group with topics, community, book club and educational videos is the Family ChemoTherapy Membership site.

2. Odds of survival- Statistics don’t mean a thing

This is another one of those double edged swords. Some families are told (whether they asked or cared to know or not) what their child’s odds of survival are. Personally, being a person that likes to know ALL the details to mentally prepare myself for less of a shock, I asked the oncologist “What is his prognosis? What are the odds of beating this?”

Seems like a logical question, right? Well, my child’s oncologist gave me the most eye opening response—“It’s either 100% or 0%. No child beats this 60%.” Each child is unique and the statistics don’t really tell us where they will fall.

Gulp. That was a hard truth. Not one that left me feeling more (or less) optimistic but it definitely was accurate and insightful. It forced me to choose optimism. I was aware of the odds of survival because the oncologist still shared the percentages of children with similar cancer staging and diagnosis who survive five years. But her words rung true.

“A child with less than 10% chances of survival can survive against the odds, and one with 90% chance of survival might not survive.” Statistics are not a guarantee.

Each child is a unique creation, with genetic compositions unique to that individual. How their body responds to chemotherapy and/or radiation is as unique as the DNA that makes that child. Then the genetic composition of the cancer is just as unique as the very DNA that makes a child a unique person. There is no cancer that is identical in size, shape, behavior, composition, etc as another child’s cancer. Then take into account medical miracles- they happen. Therefor, comparing your child’s cancer to another child’s cancer and their outcome is frivolous. If your child has a 60% chance, it should always translate to 100% hope of survival.

It’s hard to have a positive mindset, but your thoughts are all you have control of, and your children do perceive your mindset. Children are better at reading body language than adults are. You have the power to choose the tone of the next several months to years of treatment. You may have moments where it’s hard to maintain your mindset, and that’s ok. But always seek the ways to not succumb to the darkest thoughts. We all have had those dark thoughts, but we choose not to let them make themselves at home in our hearts and mind.

3. The Unseen Side Effects

Your child may be the person in cancer treatment who will experience tangible side effects directly caused by treatment, but each family member will experience side effects that are unseen or unforeseen.

The warrior child may have sudden behavior changes because coping through the impact of losing of control and feeling ill after having their bodies endure so much for so long can be not only physically exhausting but emotionally exhausting as well. And lets not forget to mention steroid rage. They have the physical and emotional battle.

All other family members experience the emotional side effects.

Siblings will begin to experience guilt, jealousy, anger, fear and so many other emotions. It will happen during and after cancer treatment, and at times even several years later. Some warrior children and siblings unfortunately experience bullying and their circle of friends may become smaller. They may see less of each parent and their sibling. They may miss out on extra curricular activities. In short, each sibling will feel an impact.

Parents and/or romantic relationships (even the strongest of marriages/relationships) will feel strained whether through constant focus on decisions on treatment, lack of quality time together or through frustration on how each person copes through the diagnosis and treatment. Intimacy, both emotional and physical, will be impacted, and you will be required to address any problematic behaviors/interactions while you are in crisis mode, when each person is not at their best, which is so unfair. Neglecting any issues will only cause further distress long term that could lead to separation or divorce — which is another trauma that doesn’t need to be added to the family. The cancer child and/or the siblings could feel that the cancer child is the cause to blame for their parents separating, and that type of guilt or resentment only pours salt on a very exposed wound.

Friendships and extended family will be impacted and you will quickly find out which friends will step up to be supportive and which ones won’t. Sometimes you will be caught by surprise who is in your circle during your time of crisis and who isn’t. At times, it’s a whole new layer of grief to add to your already fragile heart. And if a relationship is important to you, do not let your anger and disappointment come between that relationship.

4. Don’t wait until treatment is over to get help.

One thing is certain, the body does truly keep the score of trauma, and a cancer diagnosis is in fact trauma. Many parents forego seeking therapy for themselves, either because of lack of funds, lack of “predictable” time, feeling like “you might fall apart” when you need to “keep it together” during crisis, or any other reason. But the impact of a pediatric cancer diagnosis in the family impacts Every. Single. Member. Of the family. Ideally getting everyone in therapy is the best way to allow parents and children to explore the impact on an individual basis, if possible. We were not able to get siblings into therapy at the onset of my child’s diagnosis because a shelter in place was put into effect because of COVID during the week we planned on having siblings start play therapy. Play therapy is challenging to start virtually, and we had no choice but to wait. It’s the most ideal for those under age 11 (unless you have a mature young pre-teen). Asking the hospital for a list of therapists on their referral list is a great place to start to find a therapist familiar with critical illness.

The need to find support for ALL members during and after treatment is important. And as a child grows, so does their understanding of the experience, and with that comes more questions and new levels of fear and anxiety. A friend revealed that her child (a sibling) had tremendous anxiety over a decade after treatment was completed because that child felt that the parents where hiding information about the survivor child’s current status. That parent had no idea there was even any question or concern because cancer was openly discussed in their home, but that child now understood the potential impact as a young adult as opposed to the view of a young child. The point is, even for families who are done with treatment, you still have to process the effects of childhood cancer at different developmental milestones.

Another example: a friend’s child had passed away from a tumor at the age of 10 or 11 several years ago. The younger sibling is now experiencing a tremendous amount of anxiety caused by the fear of possibly not living past the age of the sibling who passed away, or fear the possibility of developing cancer as well. As an adult, we have the logic to talk ourselves off that ledge, but children still have magical thinking, and sometimes their magical thinking is very tragic.

Through therapy, you can learn mindfulness techniques, address the anxiety and trauma and how to slow release the pressure of treatment instead of explode (or implode) during or after treatment. Children have a safe place to process and assimilate the trauma and explore the magical thinking and have the therapist or parent address concerns before they become part of life long unhealthy thinking patterns.

5. Practice Self-Care

This is probably one of the most important things you can do to cope through the diagnosis, treatment and post treatment.

The level of anxiety you will experience is unreal. Finding ways to practice self care can help you cope better. Self care is anything from meditation and/or prayer, to exercise or getting your nails done. It’s reading an inspirational book that isn’t related to cancer, or a fiction book to escape and distract your mind from the stress at hand. It’s drawing or creating music or painting. It’s getting a massage or getting together with friends, old and/or new, to have a drink. It’s journaling your thoughts or writing that book you always wanted to write. It’s doing professional self development so that you are not putting your life on hold and trying to figure out how to pick back up after.

Self-care may feel selfish, but you cannot give of yourself if you give all of yourself without replenishing what your soul and mind need most. And it’s easy to pour all your energy into your child’s treatment and diagnosis and unknowingly neglect yourself. So don’t forget to find something for yourself amidst the chaos. Otherwise, when you are done with treatment, you might face an identity crisis on top of the other trauma. Showing your child(ren) how to cope as well as possible though modeling the behavior is such a tremendous gift for them.

So I leave you with this note:

Give yourself grace and take care of yourself —physically, emotionally, spiritually. Find your people and fight like hell against cancer and fight for all the areas of your life.

#newdiagnosis #cancer #childhoodcancer #pediatriccancer #selfcare #ittakesavillage #cancerdiagnosis

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