I first wrote these words on March 3, 2013 in the height of treatment and I marvel at some of the ways the awful cancer shows the goodness of God. His way are not ours…
A reminder for your day: whatever burdens you is not too big or great for The One who loves you.
Sixteen of Chase’s every twenty-four hours are spent attached to an IV bag. This bag, its carrying case and the pump weigh about as much as he does (when the bag is full) and he must drag it behind him everywhere he goes. In addition to the weight, the cord has a short range, so he can only walk about two feet before it pulls and strains; reminding him to pick up the burdensome piece again. The moment it beeps (a notification that the cycle is complete) is the happiest moment of his day and as soon as he’s detached, he immediately starts running and jumping…two things he really can’t do without causing harm when the bag is on.
However, there was a day last week when the IV pump notified it’s completion, and instead of the jubilant “My baggy’s done!!” that I usually hear, there was silence. I went to him and said “Chase, your bag is done! Do you want me to take it off for you?” He sighed and said “Not right now, Mom. I’m playing…maybe later.” He had become so engrossed in his play that he was no longer energized to remove that awful shackle of a bag.
And I suddenly saw myself in this encounter…
How often I struggle with fear and sin that -with God’s help- I could lay aside! I could find peace, find rest, and be free of whatever burden holds me. He comes to me, much as I came to Chase and says “It is finished, this can be removed…will you let me do that for you?”…yet in my foolishness, I am content to play while my worry and fear is attached to my very life vein because I am too preoccupied to see that He stands there -more able than I will ever be- ready to remove it.
“…let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” Hebrews 12:1b-2
We sat curled up on the bed – just her and me – the only two girls in this whole house full of boys.
“Do you want to talk about it?”
Darcy’s nearly ten-year-old voice was calm as she described almost dispassionately what it was like to discover her two-year-old brother having a seizure when she was only six. And then, her tone changed and suddenly, like a full-fledged adult, a hand came up to her face as her eyes welled up. “I’m so sorry…I don’t know what happened. Sometimes I can’t talk about this without crying…”
Oh, how I know that feeling! Even when Chase is in the next room – living, breathing, and probably getting into trouble, the flashbacks can still take my breath away in an ordinary conversation.
Darcy and I ended up talking for a long time and crying some too, and it lead to these words… Because sometimes I forget how hard this is for her, Aidan, and Karsten.
Aidan, Chase, and Darcy [photo credit: Jan Terry]
For the “cancer” siblings: especially the littles…
Set the tone for understanding — To a child, sickness (of any kind) is contagious. I didn’t know this until we talked, but that early Tuesday morning when Chase was taken to the ER and Darcy and Aidan cowered in the shadows of their room, Darcy kept watch over two places. She told me she’d go to the window and check to see if the paramedics had taken us out yet, and then she’d go back and check on Aidan to see if he was seizing too. She stood in the dark of the room and thought it could be all of them…all of us. It would be some time before she and Aidan fully understood that cancer could not be caught from or given to another person.
Presence can mean peace — They say nothing is worse than whatever you imagine and I think it may be true. We couldn’t always bring siblings to the hospital because Chase was in isolation so frequently, and our gut was to keep the very worst of diagnosis and treatment from them on some level, yet, Darcy told me that the times she felt most at peace were when she could either come to the hospital and see Chase personally, or when we’d FaceTime from our room in the oncology floor to Grammie’s house. She could see the IV cords and watch him vomit, but she could also see that he was alive and that was what brought her the most joy – just seeing he lived.
Set the paradigm — This one is kind of interesting to process because Bob and I actually didn’t have the luxury of telling our kids Chase had cancer. We were completely separated from them for a full week and their grandparents had to tell them before they found out from a third-party as loving friends surrounded them in those first days. But that being acknowledged, we’ve found (through trial and a lot of error) that explanations whenever possible can be very helpful. Whether it’s why Chase was getting gifts and special attention or why mom and dad seem so distracted, tired, or weepy, sometimes an age-appropriate conversation provided better understanding than pretending it wasn’t happening, brushing questions aside, or simply evening out special gifts among siblings. Our family motto has become: “There’s nothing we can’t talk about”. Hard, but good.
Help direct emotion — Chase’s siblings cannot live through all that they’ve seen and not be significantly changed. Whether it’s memories of me laying on a gurney clutching their motionless brother to my chest or listening to kids making fun of a post-treatment Chase behind his back, there is a lot of fear, hurt and anger. A lot. We spend a significant amount of time talking through how those feelings of fear or angry protection are a completely normal human reaction to what they’ve experienced, but it’s what they do with those feelings that will define them. We pray often that these things would make them and not break them, and that they would be strengthened in compassion and prepared to defend the weak because of what they’ve lived. And then we try and find ways to apply it to the every day.
Be prepared for deep feelings — This one surprised me and still does. Somehow, I expect that a lot of what we’ve gone through went over their heads. Not so – at all. They may not understand the word “terminal”, but they can sense it. There have been times that Darcy wanted to sit and talk and then others, like when she’s at school, where she hasn’t wanted to talk about Chase’s story at all, but she’s very aware of it and who she is in it. She explained that the kids don’t understand and the teachers all want to hug her and while she appreciates the love, both of those things make her feel very vulnerable. She doesn’t want to cry at school, but sometimes she needs to come home and just have a good cry over it.
Look for seasons of rest — Having a sibling with special cancer or neurological needs is as full-time for them as it is for us as parents. Whether it’s making a concession over parental attention, curtailed family activities, partaking in extra “cancer activities”, or interacting with a neurologically, emotionally, sometimes physically demanding playmate 24/7, I sometimes don’t even realize (in my own exhaustion) how tiring living with a cancer sibling is for my other kids. But Darcy could explain it to me; sharing how sometimes she can’t handle Chase anymore, but other times, she misses him and is slowly learning to listen to him when he demands her attention because he says things like “I’m a survivor, Dars!” (his pet name for her). And like adults, the siblings can have a layer of guilt over annoyance during a stressed family dynamic – especially when it’s towards a family member with a terminal illness. The guilt alone is exhausting.
There’s just no wrapping these things up. They’re messy and the dynamics continue to unfold as the kids change and grow and Chase lives on in his complications and joy. Some days are beautiful and could be used as parenting seminar illustrations and others feel like a complete wreck in which we need a bomb shelter rather than a house, but spending time with Darcy on this subject reminded me once again how good it is to just sit, talk, and pray together. We are not alone.
Moment by moment.
“Teach us to realize the brevity of life, so that we may grow in wisdom.”Psalm 90:12
This past week, we finally finished up all of Chase’s follow up appointments from his January MRI. I never get tired of seeing him interact with his doctors. This time, he brought his St. Baldrick’s cape (a gift from the staff for his ambassador year) and his new Spider-Man mask. He ran through the halls saying “Zoom! Pow!” until he tired of people talking to him, and then, stripping off his costume, he lurked in the clinic doorway and made silly faces at any doctors or nurses he saw in the hallway. He also tried very hard to tell one of the doctors the new “knock-knock” joke he’d just learned from his kindergarten teacher (“Orange you glad I didn’t say ‘banana’?) and it was something of a fruit basket upset that was pure awesome and complete Chase. Life is never dull, that’s for sure.
Despite the good results of his January MRI, there are several continuing issues. After two years of stability, Chase’s hearing loss has gotten worse. Also, his growth has almost completely fallen off the charts – introducing conversations about the potential need for growth hormones. This is something for which Chase is potentially an excellent candidate, but something that also holds a very real threat of secondary cancers. (deep breath and lots of prayer…)
Before the end of July, Chase needs to do the following:
Have two separate surgeries on both of his eyes to remove treatment-induced cataracts that will leave him with the eyes of a 45-year-old (even after the surgery)
Have an echo to check his heart for chemo damage
Have a bone scan to check the age of his bones (a prerequisite for the growth hormone discussion)
Have a consult with his ENT to determine if he needs surgery to remove his ear tubes (they’ve been in for two years now and are showing signs of wear in his ears)
Possibly have an ear surgery
Have another audiology test to determine if he needs some type of hearing assistance
Have blood work done for at least two of his doctors
Have a full brain/spine MRI
Meet with his neuro-oncology team
Meet with his neurosurgeon
Meet with his endocrinologist
And all of this is in addition to the behavior therapy consultations he needs, the IEP meetings, and the weekly speech, occupational, and physical therapy needs.
What a laundry list. I spent nearly three hours on the phone one morning just setting up appointments and coordinating with hospital staff and dates. Currently, my calendar makes me want to go hide somewhere.
The danger in making a list public is that someone always has a longer and more complicated inventory of things to accomplish. Maybe it’s you. Maybe you’re looking at my “Chase list” and thinking: “Wow, she has no idea…” – and you’d probably be right, but I made this list up and wrote about it for two reasons…well, three, really.
Pray for us. The decisions ahead regarding growth hormone are not to be taken lightly and feel like some of the most weighty things we’ve talked about since the decision to radiate Chase’s brain.
God is faithful. I need to remember this when I look at all the next few months will hold. He’s seen us through this far and He’s not about to stop now.
Hug a cancer survivor. Today, please. This is what “survival” looks like. It’s a weird medical purgatory where you’re not really in treatment, but you’re definitely not out of needing help either. So hug them close and tell them they’re amazing because the battle wounds are real and never quite go away.
Tying it in: Chase’s appointment list reminds me of my life. Too much, too complicated, too crazy… How do I reconcile all the broken? How do I best understand what God wants for me? …for our family? This is the moment by moment nature of it all. I need to lean in; seek Him. Thankfully, He isn’t done with me yet. …with any of us yet. The list is in His hands; life is in His hands.
“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6
Moment by moment…
{Below: some pictures from our clinic day at the hospital}
Calmly, the super hero makes his way through the metropolis…Chase taking a “selfie” with his Nurse Wendy, our family’s brain tumor coordinator and a part of our heart.Chase and his friend, Matthew, meet up and play “got your nose” in the Crowne Sky Garden after their appointments.
Because of Chase’s medical history, it’s not uncommon for people to talk to us when they find out a loved one, a neighbor, or a child in their community, has recently been diagnosed with cancer. And down to the last person, the first question is almost always the same: “What can I do?” or “How can I help them?”
It’s a ham-strung thing, this nasty piece called cancer. It seems to defy words because it defies our bodies, our medical advances, our treatments…everything. There is no one right way to handle this type of situation, but I’ve made my list anyway, and at the very least, you’ll learn that we might be a little crazy and and are definitely very broken, but then, you probably knew that already. My heart in these few points is that something in our story might help you.
Without further ado, ten tips for interacting with a newly diagnosed cancer family:
Don’t feel guilty or awkward if you don’t have something brilliant to say to a newly diagnosed family — I am not aware of any phrase in any language the appropriately sums up the thought: “I’m so sorry your child has a terminal illness and might die”. I really believe it’s okay to say “I have no good words, but I love you and I’m here.” Sometimes it’s not about verbally fixing the problem as much as it is just being willing to sit in the trenches with a friend and keep them company while they fight it out.
The initial stage of diagnosis may not be an appropriate time to share resources with the family — The day after Chase was diagnosed, I almost passed out on the medical imaging floor and had to be taken back to his room in a wheel chair. It was incredibly embarrassing. In the moment of diagnosis, the patient and/or family is just trying to keep breathing. That may not be the right time to try and connect them to groups, friends you know who’ve had cancer, or other resources. So much of the first days are just trying to figure out who they are in relation to the illness. Unless the patient’s life hinges on your words, it’s okay to wait a few weeks.
The initial stage of diagnosis is not the right time to discuss a family’s treatment decisions — If you truly believe that you have life-changing, life-saving medical information that will assist the person you’re close to, I’d strongly suggest taking it to a close family member (like a grandparent) and if that isn’t an option, lovingly write it out in an email, and then be understanding if you never hear back from the family. I can almost guarantee that it’s nothing personal – they’re just trying to survive.
[Technical note: did you know…? Chase was born with a genetic predisposition for his particular cancer. He was a naturally-born, breast-fed, organic vegetables, green cleaners, low sugar, cloth-diapered baby, and he still got cancer. When he was taken to the hospital, he would have had hours…maybe days without medical intervention. That’s how fast his cancer grew. For our family, there was not a liberty of months available to try alternative treatments or wait and see what unfolded. And Chase’s story is the same as many others in the childhood cancer community – these cells that hit our littles come fast, strike hard, and seemingly have very little to do with lifestyle choices.]
Consider the diagnosed family’s costs — Before Chase was diagnosed, when I thought about the monetary costs associated with cancer, I thought about doctors’ bills. And that part is true… ha. You should have seen the bills for the brain surgery alone. But what I didn’t consider was the cost of gas for all the back and forth to the hospital, the cost of food – eating out sometimes three times a day for two weeks on end – the cost of parking (almost as much as the brain surgery, I swear…), and dozens of other little (and not so little) accidentals. [Example: Chase became too weak to walk, but was too heavy to carry around the hospital for 10 hours a day and so a special stroller had to be purchased.] And this doesn’t even touch all side effect costs of physical therapy, psychological assistance, hearing aids, walking aids, ongoing medications, evaluations, scans, etc… depending on the child and their road through treatment. The cost list is literally endless.
The diagnosis family may not have mental energy to make “normal” decisions — Shortly after Chase was diagnosed, we had treatment decisions. Bob and I had to decide terrible things and big things that would make you want to fall down if you heard all of them – and we did it and stayed standing. (Thank you, Jesus) But one day, my mom was making lunch for my other kids and asked if I wanted them to eat chicken nuggets or peanut butter sandwiches and I completely snapped. Totally lost it. Was it a big decision? Not at all. But all – I mean ALL of my decision-making capability and all my mental energy had gone into those decisions for Chase and staying on my feet. I literally had no capacity to care what the other kids ate for lunch even though I loved them dearly and didn’t want them to starve. I simply didn’t care what food was on their plates.
Be sensitive to a new diagnosis family, part A — Please consider that your drama in the car pool lane or issue at the grocery store may sound very callous to a parent who hasn’t been out of the hospital in three weeks and wishes that their child could go back to school.
Be sensitive to a new diagnosis family, part B — Surprisingly, the opposite side of speaking callously about your car pool issues is not speaking about them at all. It’s true, my average day may very well be more difficult than your worst nightmare, but stress is stress and it breaks my heart when people tack on a “it was bad, but not as bad as brain cancer” to the ends of their sentences when I’m around, or drop off speaking when I come into a conversation. Yes, our life is complicated because of pediatric cancer, but it’s not like we have the plague. Don’t feel the need to avoid the subject if the family hasn’t explicitly requested it. There is no brain cancer trump card. There is no hierarchy of bad things. And sometimes, I very much need to be out of my own head and listening to whatever is in yours. Sometimes, listening to those anecdotes and life moments is as “normal” as my day gets and it keeps me from focusing on the cancer. So, don’t be afraid to ask “What do you feel like talking about?” – the answer may surprise you.
Don’t assume that just because you don’t have cancer you can’t be a wonderful friend to a new diagnosis family — Yes, it’s true that nobody understands like another parent of a pediatric patient, but some of my best connections, encouragements, and life lines during Chase’s cancer treatment came from people who never had a child with cancer. So, don’t discount the role God might be wanting you to play in walking alongside someone.
Be prepared to shift your idea of community for a newly diagnosed family — I love community and fellowship – going to people’s houses, having them in mine, grabbing coffee, taking kids to parks, to the pool, etc, etc. But all that stopped when Chase was in treatment. Bob and I were in the hospital most of the time, and what few days we were out, we were exhausted, sleep deprived, and had a child attached to an IV bag who couldn’t be out of our sight or reach, let alone all of his emerging issues of immunity and neurological over-stimulation. Gone were the days of pools and parks, people coming over, or going anywhere. In all honesty, that was one of the most well-meaning, yet painful questions I was frequently asked: “Well, what do you mean you can’t get out? Can’t you get some time to yourself?”No. Even if I could have left Chase’s side (which I couldn’t unless Bob or a medical professional was available to handle his IV bag), I was too sleep-deprived to walk, let alone drive. My point is: be willing to consider a paradigm shift in your community with a cancer family. Maybe instead of taking them out to a restaurant, you bring them dinner, or maybe just dessert and coffee for an hour. Don’t be surprised if you don’t see them at events – it may not be a coping issue, but rather a medical necessity. And maybe there are ways to give the cancer parent “time off” in their own home if they can’t get out. Sometimes a short visit over coffee is all that’s needed for a quick breather.
There is no window of time for encouragement to a newly (or not so newly) diagnosed family. We get used to a lot of things and that’s good, really, it is. But that means that there’s often a huge out-pouring of love and caring and gifts and help at the beginning of a diagnosis and then things taper off as the shock wears off. Most childhood cancer treatment roads require a long, exhausting marathon, not a sprint, so keep that in mind as you connect with your friends. You’re never too late, and quite honestly, checking in down the road can sometimes be more encouraging than at the beginning.
Do you have other questions about how to help a family with a cancer diagnosis? Let me know! We’ll take it together…
Donna’s mom is a wonderful, colorful, gifted writer and for so many of us on the cancer journey, she quietly writes two words over and and over on our pictures and stories: Choosing Hope.
So today, as writers and bloggers band together on social media for – #DonnaDay – we choose hope for this family and all of our families.
Because this is one of the very real ways we can “chase the cancer away”.
For more on the St. Baldrick’s fundraiser honoring Donna, or to donate, click here.
For more on Donna’s story, told by her mom, click here.
![Aidan, Chase, and Darcy [photo credit: Jan Terry]](https://i0.wp.com/www.chaseawaycancer.com/wp-content/uploads/2016/03/Siblings.jpg)
