The Internal Struggle to Make the Right Choice and the Weight of That Burden

Throughout the cancer journey, parents are required to make decisions. Some of them seem obvious but it is still a choice to be made. Others are more difficult as we weigh the options available to treat our children and the possible ramifications. Then there are the hard choices we have to make such as two completely different treatment pathways, whether to continue treatment or stop altogether and the hardest regarding the end of life. I originally started this blog entry as I sat at Pey’s bedside confronted with all the choices we have made for her and the ones that were coming. I couldn’t finish it then but I’ve come back to it because it is a universal topic among parents, “Am I making the right decision?”

We often don’t even think about the simple decisions we make because we didn’t have to actively think about them. One example from my experience basically did you want your child to have life-saving brain surgery until we know what the tumor is? “Duh.. yes. Where do I sign?” I didn’t need to think about it. The surgeon reviews the possible cons the worst being death and my response was along the lines of she’ll die without it so please try to save her life. Surgeries can be scary as you consider the risks but sometimes it is the easiest decision you can make. Think of all the things you decide to do to make your child comfortable during a procedure. Advocating to use adhesive remover for dressing changes or getting a child life specialist to explain a procedure so your child is less scared are all wonderful, simple decisions that we make for our children.

Then there are hard decisions. What if two treatment options are available but you can only do one? What if you are presented with treatment but the side effects are worrisome? You weigh the pros and cons of each but ultimately you have to decide. These types of questions, I see asked the most frequently in cancer groups on social media. Sometimes everyone agrees and sometimes there are dissenting opinions. However, cancer doesn’t respond the same way for everyone. I have worked with children that had the same cancer and treatment but all had different journeys and outcomes. Sometimes we are faced with decisions where there is no right answer. There is always the “what if.” I’m sure we would all love a guarantee that we are taking the right course of action but you will never know. I think that is when it is most important to go with your gut and not compare your child’s journey with someone else’s. You have to delve deep inside and analyze what your beliefs are to make a choice.

At the beginning of Pey’s cancer journey, we were given the option to either treat her extremely aggressive tumor or not do anything. The odds of her surviving were less than 1%. It was a no-brainer for us, we would reach for the stars to have our daughter. The hope was that she could be part of the few that make it. I’ve written before about deciding what was important to you as a parent at the beginning of the diagnosis but also thinking about how far you would go with treatment and at what point you would say you need to stop. It was always important to me that we would do everything we could for our daughter but if treatment wasn’t working and before she became my definition of miserable, we had to stop. I couldn’t face watching my daughter’s spirit disintegrate in front of my eyes. Everyone will have their stopping point but this was mine. I’ve seen it too many times in my work to watch my daughter go through it. So faced with the unthinkable, we had to make the toughest decisions of our lives.

Like Ana in Frozen II (for all those parents that had a child like mine watch it on repeat), I think of her song “The Next Right Thing.” With the information in front of us, we had to decide what was the right thing to do. We thought about what we wanted for the end of her life, having to decide what was the most important to us. After long discussions, we decided it was time to put Pey in hospice care. However, before hospice could start, her tumor took the option of a gentle passing at home away from us. She was in the hospital on a ventilator less than 4 hours later. Very quickly we were asked, “What do you want to do? What are your goals at the end of her life? How would you like to support her passing?” We barely got used to the idea that she would be passing and suddenly we had to decide all the fine details of what to do and not do in regard to her medical care. Simultaneously, you have to decide which mortuary will take her body once she’s passed. My pain and grief had to be shared over and over again with people I didn’t know just to get information. The cherry on top of this ordeal was having to decide on the language and beliefs we wanted to use to explain Pey’s eventual passing to Big Sister. It was a lot to handle in a short amount of time. Now, in the aftermath, I have to sit with the weight of those decisions I made. Did I do enough? Did I do the right thing?

Up until January 2022, I’d been comfortable with the decisions we had made. I think it is human nature to second guess our decisions but the consequences these decisions have on our children make the stakes higher. So it’s not unfathomable that we wouldn’t look anywhere and everywhere for a sign of hope in the options we have to choose from. Something that gives us validation, comfort, and solace in the choice we are leaning towards. But we all know there are no guarantees. I expected to have a healthy child as every parent does but that wasn’t the case. All we can do is hope for the best and remind ourselves that we are making the best decisions we can with the information we have. If you asked all the questions you had from your treatment team and others around you, then weighed it out, that is the best decision. Would someone else make a different decision? Maybe, but they aren’t you nor have they had the experiences you have had. You have to do what is right for you and your family. For the families that have a child in remission, you get to look back and rejoice that you had the best outcome and the choices you made got you to this point. Even still you may still question some, especially if now your child has side effects from all the chemotherapy drugs. For those of us who lost our child, we struggle to find meaning, question the choices we made, and bear the weight of them.

Any given day I struggle with a splash of guilt, a request for understanding, and self-forgiveness. I try to give myself a little bit of grace. All I can do is repeat to myself that I did everything I could out of love. We put our daughter through chemotherapy, surgeries, and radiation because we love* her and we were not willing to let her go without taking every chance available to us. Ultimately, we had to let her go because we love her and couldn’t watch her suffer for longer than she had to. We can’t go back and change the decisions we made nor do I think I would change anything. With hindsight being what it is, I wonder even if I had chosen differently, would it have changed anything? All I can do is feel the weight of it all. I remind myself to take solace that I made the best decisions I could with the best of intentions and with all the love in the world. 

That is all I can recommend. You are doing your best with the information you have. Make the decisions that are right for your child and your family. Go in with hope and trust in yourself. Ask for input if you want it but have faith in yourself. Regardless of the outcome, you are doing (did) the right thing. Remember that always. 

* I use the present tense because I will always love my girl even though she is not with us anymore. To use “loved” (to me) implies that it ended or belongs to the past.

The Harsh Reality of Cancer Recurrence

Many times throughout the cancer journey there are moments where life seems surreal. Usually at diagnosis and then again if there are setbacks. It feels like an alternate reality where nothing makes sense but you are forced to play along. It must be a coping mechanism. The mind is overwhelmed with all the information and feelings so it slows everything down and makes the edges fuzzy until you can catch up. A few weeks ago, I wrote about Scanxiety- the fear and anxiety that a person may feel regarding future imaging studies. I wrote about it because Pey was due for an MRI and my anxiety was creeping up. At her previous MRI, the doctor's found some regrowth. The chemotherapy regimen that was successful in the past was part of the regimen for maintenance therapy. So of course, we thought it would be successful again. Unfortunately, we were wrong. Her tumor grew back with a vengeance.

What can I say? It felt like the rug was pulled from underneath me. She has been doing so well. There were no signs. Then we came to the worst part. The news that all parents wish to never hear. We are no longer working to cure Pey but to extend the time we can have with her. Pey's specific cancer, the odds were never really in our favor. The 5-year survival rate is 5% and less than 1% if there is metastasis. Even with those odds, we were hopeful that we could be part of that percentage. Now we are faced with hard conversations and harder decisions.

With the idea that there is no wrong answer, first and foremost was to decide whether to let the tumor do its thing or put Pey through another surgery to remove as much as possible and buy us a few more months. Both options will have the same conclusion, it becomes more a matter of the timeline. We can't keep giving her chemotherapy and radiation because we will start causing more damage than benefits. She can't keep having brain surgery. Clinical trials are still on the table. However, with her age and limitations, she doesn't qualify for most of them. The ones she does qualify for have no openings and we are now among other waitlist hopefuls. Often these are hard conversations to have with partners and family. Everyone will have their own beliefs on how far to go and quality of life. My husband and I are mostly on the same page but we had to be honest with each other about what we ultimately want. Where he continues to hold on to a possible cure, my focus is on her overall quality of life during this next phase. Neither of us is wrong but we know this is a conversation we will have to come back to eventually.

We asked for a favor before proceeding with surgery. Due to the pandemic and her diagnosis, we never felt safe enough to travel. Now more than ever it felt important to have a family trip. Create the memories and experiences that felt robbed from us. So we were granted two weeks to plan, travel, and return from a trip. Thanks to our family, we were able to take a week-long trip to Hawaii. A place very special to us and an experience we felt Pey deserved.

Hawaii was good. We ate great food, had fun experiences, and had a few firsts. Pey's first time in a pool, on the sand, in the ocean, and importantly first shaved ice. Everything we recorded and photographed. On the surface, it was a great trip. Big sister and Peyton loved the adventure. My husband and I, however, felt such sadness throughout. We knew the reason for this trip so small things would sometimes cause a frown or in my case, tears. There is nothing like catching yourself speaking about future trips with both kids and realizing that one may not be there. It breaks my heart.

I write this from our room in the Pediatric Intensive Care. It has been 3 days since Pey's surgery. She is grumpy and miserable which is not unexpected. However, I do miss her smiles and laughs. She is doing well medically and we hope to be home early next week. The surgery went well. When she has properly healed, she will begin a chemotherapy regimen that will hopefully slow the regrowth of her tumor. We hold out some hope an opening in a clinical trial will happen. Although, it is never a guarantee that it will work. I move freely through the stages of grief daily. I don't know what the next few weeks or months will bring but I stand resolute that I will continue to love this girl with all my heart. I will hold her tightly. I will stay present in every moment. Big sister will have support and learn of the truth when the time comes. So for now I live in this surreal life. This weird state of disbelief but functioning anyway. The fact that for my daughters' sake, I continue our lives as if nothing has changed.

5 Ways to Manage Scanxiety

It is one of the most basic parts of treatment but can be the most anxiety-inducing element. Pey has her MRI this week and I couldn't be more freaked out as my "Scanxiety" rises. The interesting thing about what is often referred to as "Scanxiety" is not so much the stress of before, during, or after scans but the anxiety surrounding the results. The lead-up to Pey's scans are always the worst for me. I don't stress about the actual MRI but what the results will be. Over the past year with several MRIs under our belt, the stress hasn't let up. In the past, I've struggled with controlling my anxiety starting weeks prior. Now I've gotten to the point where the anxiety increases the week before. I wonder whether the news will be good or bad? Will our treatment plan have to change? If it's not good, will we have to get inpatient treatment again? Or will we be sent off somewhere for some exclusive treatment protocol? I notice the crazy in those worries. I recognize that I am getting way way way ahead of myself, but I can't stop. Sometimes the anxiety is so bad my hands tremor, I can barely eat, and I hardly sleep. So I consciously make an effort to manage my anxiety.

As scanxiety has been on my mind and intending to write about it, I was interested in looking for published studies on the topic. There have been many studies on scanxiety in different cancer realms. One article I found, tried to consolidate the data to see what the research on scanxiety was showing. However, there was little research available on proven interventions to manage it. They focused on meditation, distraction, education, and massage. Not surprisingly, massage was one of the only interventions mentioned that demonstrated an improvement. What was also nice to see, at least for me, was the fact that age, gender, and ethnicity did not correlate with perceived scanxiety.

Since it is so important to manage our scanxiety, I've listed my top 5 ways to manage it. May it be giving yourself some leeway on what you usually accomplish in a day, sharing your feelings, or preparing for it.

1. Make Small Goals

When my anxiety is hard to handle everything seems overwhelming. So I try to set myself small reasonable goals of what I need to accomplish for the day. It may be that besides the basics of caring for my kids and house, I'll start laundry or wash dishes. The house may not be perfect and that's ok. If I complete these small goals then the day is a win.

2. Talk It Out

Talk to someone you trust. Your partner, friend, family member, or therapist. Sometimes just airing out those feelings can help relieve some of the built-up anxiety you may be feeling. For me sometimes just crying out my fears or even getting a hug makes me feel better.

3. Plan Your Result Follow-up

When you know when your child's scan is figure out a day with their Oncologist to get the results. The doctor will have a better idea of when to expect to see the final report. Also, some doctors are more comfortable looking at the scans and having an idea of the results than others. Our Oncologist usually tells us what he sees with the caveat that the radiologists will be doing a more thorough look. He does this whether it is good news or bad. We usually decide to speak with him the following day. Most of the time, like the saying, says "No news is good news." Although it doesn't make us feel better as well as discussing the results would.

4. Distract Yourself

I like mindless activities to busy myself when my anxiety is out of hand. My mind is already working a mile a minute so focusing on something that I don't have to make real decisions about. I bake a treat, go through my children's clothes to catch things they've outgrown, color, or play games with Big Sis. If I'm being totally honest I have found myself obsessively cleaning my kitchen to the point that I'm not ok with anyone touching anything in there. A glass of wine might be involved in that process too. Find something that works for you to release some of the pent-up energy. Go for a walk, meditate, listen to a podcast, whatever floats your boat.

5. Educate Yourself and Your Child

If your scanxiety stems from the unknown of the scan, what it will involve for your child, or your child is worried, find out more about it. There is plenty of information on children's hospital websites that will explain the scans. Websites like the Imaginary Friend Society have child-appropriate videos on each of the major scans. Also, reach out to the Child Life Specialist so they can talk it over with your child and prep them. Hopefully, seeing your child more relaxed will help ease some of your stress and anxiety as well.

I hope you recognize that scanxiety is normal. We have all suffered from it at one time or another. It will always be a part of our journey with cancer because our children will need scans, probably, for the rest of their lives. I have had parents tell me that even 5 to 10 years later when new evidence of disease would be rare and their children are considered "cured," they still worry about the results of the scans. All we can do is get ourselves through it and manage the best we can. Then repeat next time. Leave comments below on how you manage your scanxiety.

“Scanxiety: a scoping review about scan-associated anxiety”-Article can be found by clicking here.

Tips for Preparing and Packing for Hospital Admissions

Preparing and packing for admission to the hospital is never a fun thing. The days I had to pack Pey and me for month-long admissions were torture. In the early days, it was a lot of trial and error on what I needed and what was a waste to bring. Now that we are in maintenance her fever admissions leave me even less time to prepare. Such was my experience this past week. Right as I breathed a sigh of relief that we made it through the holidays without a fever, she had one a few hours after receiving treatment. Unplanned admissions are challenging because of how quickly we are expected to arrive at the hospital, leaving no time to adequately prepare. I have compiled a list below of the main categories to prepare and pack for both short and long-term admissions. I've also included some of what I've seen parents do when I was still working in the hospital.  

Make a List

For the first few admissions, I winged my preparing and packing for the hospital. However, I noticed I was requesting more things from home that I'd forgotten or sending unnecessary stuff back. Finally, I figured out I needed to make a list of what I wanted to take with us to the hospital. In Pey’s “Brain” Binder (click here for more information), I had a working list of what to pack. The list traveled with us so I could add or subtract as our time on the inside moseyed along. Try to take into account how your child feels during and after treatment and what worked for you. For example, in the beginning, I took a lot of clothes for Pey with me. During her second cycle of induction, I noticed that she was more nauseated through the first week of treatment and 3 days after. I guess for my vanity, I preferred her dressed than in a hospital gown. But as wardrobe changes occurred 3 to 4 times a day, I was going through a lot of her clothes and creating more laundry for our home than was necessary. That is when I decided to decrease the number of clothes I would pack for the first week and use hospital gowns for those first few days. Creating a list and then editing it while in the hospital will make future packing much quicker.

Pre-pack your GO bag

It saves time to have things already packed that you know you don’t need in your day-to-day life. We always use the same suitcases to pack for the hospital so we keep things in there to save time. Investing in toiletry bags and travel-size containers or products for yourself and your child, go a long way. By dedicating a toiletry bag and its contents just for hospital use saves a lot of time and energy, especially if you refill it before setting your bag aside when you get home. Our suitcase was also filled with some wipes and diapers, a canister of cleansing wipes for her toys, and even a travel bottle brush, drying rack, and bottle soap dispenser. If you can, pack a surge protector or extension cord for all your rechargeables and dedicate charging cables to the bag as well. My husband purchased a 10ft charging cable for our phones and tablets so there was no need to unplug from the outlet if we decided to move somewhere else in the room. 

Clothing

Knowing what works for you and your child while in the hospital is a must. With Pey, I am always moving from the bed to the floor to a chair or the pull-out by the window. So my clothing of choice is leggings and shirts so I can be comfortable doing any activity with her. Therefore packing for me is easy as I only have to pair t-shirts with leggings. For Pey, I pack her side button bodysuits so she can be quickly exposed for doctor and nurse assessments or dressing changes. I found hers at Target (up to 12 months) and Kohls (up to 24 months). There are also organizations like Amanda Hope Rainbow Angels who offer/sell Comfycozy’s or stores on Etsy that have zippered or button shirts to make line access easier. These clothing options also make line access for home health staff or clinic days much easier. By already having a go-to wardrobe for your child and yourself will make packing a breeze. 

Medical Equipment/Supplies

Although hospitals will use their supplies for the care of your child, it is always a good idea to bring at least one backup of specialized items just in case. Sometimes certain medical supplies for our children may be special ordered or hard to find. I always bring Pey’s spare GT, GT extension set, feeding pump, feeding bag, feeding syringe, and a day's worth of formula. There is nothing like a GT popping out and staff can't get a hold of the department that will have it. Or in the case of formula, it may take the dietary staff a few hours to make the formula with your child getting delayed on their feeds. I also recommend bringing any specialized medications that the hospital may have trouble preparing quickly especially if it is needed at a specific time. Although it may be up to the hospital policy, some will allow a home dose to be given under certain conditions. 

Entertainment

Keeping children and parents entertained while in the hospital is always hard. I am such a proponent of working with the hospital’s Child Life Specialists for special activities while your child is admitted. Most hospitals have a playroom for small children and teenagers but with the pandemic, most of these areas are now unavailable. I suggest bringing a variety of toys and games to keep your child entertained. I would change out Pey’s toys weekly so she wouldn’t get bored. In the past, I have seen families bring whole game consoles (like Xbox and PlayStations) with their corresponding cables and connect them to the room’s television. Tablets, laptops, card games, board games, and craft supplies are all great options for school-age children and up. I once had a patient that would do movie marathons with the Harry Potter series or Lord of the Rings. Books are pretty hard to lug around but there are some great apps like OverDrive and Libby. You can borrow digital copies of books or magazines from local libraries. Popular books tend to have longer wait times so try to keep that in mind as well. There are also organizations like NEGU (Never Ever Give Up) where you can receive Joy Jars full of toys and encouragement. 

Food

This is a huge topic that I plan to have a full post about but here are some quick ideas on food. As much as I love to eat and offer my children fresh food sometimes it is not feasible in the hospital. Some hospitals have a parent room with refrigerators and microwaves available but often space is limited. So I tried to pack things that I could keep in our room as much as possible. I would pack bananas, avocados, trail mix, crackers, peanut butter, Nutella, and bread. I would also order things from room service to repurpose. Hard-boiled eggs and a packet of mayo became an egg salad sandwich or an order of bacon for my avocado toast. My point is to use the hospital kitchen to supply some ingredients that you can add to from the "pantry" in your room. Bringing an electric kettle and bowls can be a good option as well. My husband would use it to make instant ramen noodles. I would also highly recommend bringing water with you. Although the hospital will offer it to you and your child. There is nothing like running out and having to wait 10 minutes for more water. I always made sure to pack at least a couple of liter bottles just in case. Another thing to remember is that you can always use delivery partners like GrubHub or Postmates or arrange for friends and family to drop off food for you. On that note, if family and friends are asking how they can help ask for gift cards for delivery services. Believe me, the hospital lobby will be used to having food dropped off, employees do it all the time. Just be clear in your directions of where to take the food and the room number it is for.

Comfort Items

There is nothing like having small comforts from home to make the hospital feel less hospital-y. Bring your favorite pillow from home. I have a cute fake flower the size of a large coffee cup that I would put in the window. Some hospitals will allow you to bring diffusers for essential oils but if yours doesn’t you can try a scented pack to put in your pillow. My daughter was gifted a Scentsy pal that I would put a pouch of eucalyptus or lemon ( both good for nausea) in and tie it on her bed. A favorite blanket from home was always nice to have around too.

There is a lot of thought that can go into preparing for a hospital admission. Figure out your system and in time you will get better at deciding what you need and packing will become easier and faster.  Also don’t forget to bring items for yourself to keep you busy, entertained and comfortable. If you want to see my packing list for an example, please click here.

Reclaiming A Day of Tragedy to A Celebration of Resilience

As Christmas descends on our house as planned by the great inventors of a 12-month calendar and our brand of Christianity, it is often a month of reflection and celebration. December is a busy month for our family. We kick off with a wedding anniversary, roll into a birthday, a niece's birthday, Christmas, and then another niece's birthday all before New Year’s Eve. Last year in between picking an anniversary present and Christmas gift shopping, Pey got sick. What I thought was possibly a bad viral infection flipped our lives forever. A month that should have been filled with celebrations came to a standstill with her diagnosis. Her first life-saving surgery to relieve the pressure in her brain was the day after our wedding anniversary. The 9-hour surgery to remove the tumor in her brain took place two days later. My husband and I had to take shifts to be with both our children for the holiday. Pey and I watched Big Sister open presents over FaceTime. Pey received presents in the hospital that she could barely interact with as she slowly regained strength in her limbs. The days blurred together. Suddenly it was New Year's Eve. Pey and I started the year separated from my husband and Big Sister. Foreshadowing what our year would mainly encompass.

Last month I started getting all the big feelings again as flashbacks of the weeks leading to Pey's diagnosis reappeared. Again, the guilt I had mentioned in a previous post came rushing back. The pain of the face and voice of a former colleague telling me a mass was found in her brain. The immediate transfer to PICU where I was told she needed urgent surgery because she could die and later that the delayed closing of a fontanelle (an opening between the bones of the skull that fuse throughout the first year of life) had been saving her life for who knows how long. The pressure in her head was almost triple of an average child her age. With all these thoughts swimming in my head, I looked to the anniversary of that day as a reminder of all the heartbreak we endured. I was left asking myself. Do I pretend it is just another day? Do I grant myself permission to wallow in the pain and all the things we have lost this year? Or do I go the opposite route? Turn it into a day of celebration of our daughter that has displayed unmeasurable resilience and bravery. Celebrate the strength of spirit and flexibility Big Sister has demonstrated. Celebrate the perseverance, strength, and camaraderie my husband and I strive toward. Or overall how our little family of four has come together through the challenges we've faced. After some contemplation and discussion, I felt we deserved to celebrate our strength through that time.

I wanted to reclaim this day (or week) for us. I wanted to take a moment to acknowledge all the tragedy and hurt from that time. Those days are painful memories but from that, we have learned so much about ourselves and our children. I can't say how much Pey has surprised me with her tenacity, resilience, and exuberance. In the beginning, I was worried how she would do with everything she had been through and what lay ahead. I didn’t have to worry. Shortly after she showed her tenaciousness, determination and the stubborn aspects of her qualities really shined. Soon we were getting smiles again. As the weeks progressed she could cared less and less if nurses and staff touched her. She smiles at everyone, waves at people and even offers high fives. Even on her crappiest days, she would crave cuddles but still let everyone do what they needed to do. I am so lucky and grateful for her. I worried the most about Big Sister and over time she demonstrated how wonderful she is. The flexibility in which she adjusted to our change in routine was astounding. She missed her sister but understood that Pey needed to be in the hospital to get special medicine. It wasn't until several months later that she began to ask questions about Pey's diagnosis and treatment. She took the time to draw me pictures and helped me pick toys to bring with me to the hospital. She hugged me and gave me kisses when she saw me crying. When Pey and I moved to San Diego for treatment, Big Sister saw it as a huge adventure. It was our “Holiday house” and her weekend visits would involve going to somewhere new she’d never been. She has been an unstoppable force throughout. Lastly, I'm proud of how hard my husband and I worked to keep our family afloat. At times it felt like we were single parents being overwhelmed by everyday challenges. We found happiness in our short time together between cycles or weekend trips. We worked together through tough decisions and overwhelming emotion. I have new found admiration for his resilience. He commends me for the strength I have displayed. Sometimes it was a struggle to remember we were a team but we always came back to that. We deserve to celebrate our accomplishments as individuals and as a family. We have to celebrate how we are persevering. But how?

It is not a new concept to celebrate a significant event in a cancer story or a Cancerversary. Cancerversaries specifically being a yearly celebration of a specific milestone. It can be different for everyone but tend to be around a remission date, surgery or end of treatment. For people with no growth or cancer cells being present, the marking of time is especially significant. For most cancers being “cancer free” for 5 years is considered cured. I’m sure that those reminders are also a little anxiety provoking as well. For Peyton’s Cancerversary, we decided to have a normal day and end it with an ice cream party. My husband and I took a moment of reflection and explained to Big Sister why the day was important. We praised each other for our individual contributions during the past year. I took a moment to pray for Peyton and our family. Then we donned our party hats and noise makers. We laughed and hugged. Then we made our sundaes. Pey ate some ice cream, proving my ice cream loving genes run deep. It wasn’t big which was the point. We celebrated ourselves and it was perfect.

I am in no position to tell anyone how to mark the occasion of a cancer diagnosis. Do what feels right to you. There is nothing wrong with pretending it’s any ordinary day, being on the edge of tears, or celebrating. I celebrated the day but I didn’t ignore the tears I cried in the morning or the tug on my heart all day. I looked at pictures of her then and compared them to how she looks now. I needed to reclaim this day for our family. A year ago we were suddenly separated but today we sit together in our Christmas decorated home surrounded by lights and myriad of toys. I am thankful to have us all here. I am grateful for all the memories we were able to make. I celebrate our strength.

What are your Cancerversaries and how do you mark the occasion? Leave a comment below.

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The Struggle of Keeping an Immunocompromised Child Healthy

In the book “Everything, Everything” by Nicola Yoon (and movie of the same name), the heroine Maddy suffers from an immunodeficiency disorder making her highly susceptible to infection. Maddy yearns to be a normal teenager and explore life beyond her windows, but her mom painstakingly (obsessively) does everything in her power to keep her safe and healthy including (in the movie version) an entryway that sanitizes people. Although, spoiler alert, it all turns out to be a lie, I can understand where her mother is coming from. For the average child, an infection can primarily be managed at home. If symptoms like a fever lasts for several days or worsen, then it is advisable to take a child to see their doctor. However, a child with cancer gets a different set of rules like in the book/movie. Infection can be serious for an immunocompromised child. Besides the implications for the child, having to rush to the hospital disrupts the family. With fear of infection and the disruption it causes, it is no wonder why many parents of a child with cancer become obsessive about maintaining clean environments and keeping away from anybody sick. 

With all the things I have done in my job, it may come as a surprise that I am not a huge germaphobe. Children getting sick strengthens their immune system for the future. It can be an awful experience for everyone but it is beneficial in the long run. With my eldest, I always let illness ride itself out. The only time I took her to the doctor was when she complained of ear pain or when symptoms didn’t improve as expected. When she started pre-school she was sick almost monthly for about 4 months but rarely has gotten a cold since. My husband, on the other hand, was constantly cleaned and prevented from catching any illnesses as a child. As a result, he catches colds easily and tends to be hit by them worse than everyone else. So I’ve had to make a huge change in how I deal with Pey being sick. Every cough, sneeze or feeling slightly warm, warrants a full nursing assessment and plan of care. Even though her counts may be relatively well while in maintenance, she is still considered immunocompromised. 

Being immunocompromised means the body doesn’t have a strong enough immune system to properly fight infection. For our children with cancer, the most obvious reason for being immunocompromised is chemotherapy but there are other medications on treatment protocols such as steroids that can negatively impact the immune system as well. For this reason, CBCs are collected regularly after chemotherapy is given.  The ANC has to be at a certain level before a child is discharged home during hospitalized treatment protocols like during induction or consolidation cycles. Sending our children into the world with lowered immune systems puts them at a serious disadvantage against any illnesses even common ones. It would be like me racing against Elaine Thompson-Herah in the 100-meter dash. For non-Olympic Track fans, it would be like going head to head with Paul Hollywood in a baking challenge. Not only are our children at risk for infection through usual routes like catching a cold through their respiratory system, but they are also at risk from the medical devices used in their treatment like getting an infection through their central lines. Having an opening in the skin is an entry point for germs as well as in the entry site for a central line. That is why line dressing changes are done as sterile as possible and the site is cleaned with powerful cleaning agents. As parents, we have to be conscious of what our children are exposed to and trust that those handling our children’s lines are following best practices. Therefore, it is not a huge leap that we may develop obsessive cleaning routines, anxiety about catching illnesses from others, and implement rules regarding mingling with others outside of our household. We are therefore given the challenge of creating a safe bubble for our children without limiting their life experiences and the ability to behave like the average child.

I don’t know how other parents are feeling but being in our second year of a pandemic and still having mask controversies makes me distrustful of others and possibly their compassion. I was cautious and hesitant to send my eldest to school when I still had the option to keep her in preschool for another year to avoid the risk of exposure. I almost had a panic attack when two parents in the pickup line were discussing their COVID-19 fatigue and no longer cared if they caught it or not. How can people be so callous should they get COVID and their child exposes it to my daughter thus putting our immunocompromised child at risk? I am constantly in fear that she will bring something home. She has access to hand sanitizer at all times, we wipe down her backpack from school, have her wash her hands right away, and had discussions about wearing her mask unless she’s eating and not to touch her face. Yet she still has managed to bring home two colds in three months. It was so hard balancing caring for her with my anxiety to prevent it from spreading to Pey. However, it was too late on one occasion. Pey started having cold symptoms within a day and developed a fever the next. I was in tears. 

For a child with cancer, a fever is an automatic admission to the hospital. Research has shown improved outcomes with starting antibiotic therapy quickly. So usually it is a mad dash to pack everything that you or your child might need for at least two to three days until the results of blood cultures come back. However, it is not just trying to get out the door quickly without forgetting anything. Rushing to the hospital also disrupts the family dynamics. With Pey’s last admission, we had to quickly figure out who was going to stay with Big Sister as we went to the hospital. My mother-in-law was willing to stay the night to help us out. Then it was a question of who would pick her up from school if we had to stay longer than the weekend. Then it was the feeling of guilt of having to leave late at night while Big Sister was sleeping and knowing she would wake up in the morning with her sister and mom gone without a proper goodbye and explanation. 

With all the consequences of a fever, it should not be a surprise to anyone that parents of a child with cancer are more vigilant when it comes to cleanliness and who they feel comfortable being around. There was a parent, I remember, who used to wipe down the hospital room with Clorox wipes before letting his child come in. Plus there is so much riding on us to keep them safe at home and in the world. Pandemic or not, our children would still have been required to wear a mask in public to protect them from others. Then there’s the fear of what happens if someone in your household gets sick. What lengths would you go to to keep it from spreading to your child with cancer? Or is it almost inevitable and all you can do is cross every finger and toe and pray they don’t get sick? For this, our family and friends need to be understanding when we ask them not to visit if they are sick, wash their hands before coming near our children, and not be critical if we as parents are hypervigilant. So I’m doing the best I can to give her life experience and keeping her safe. Although who wouldn’t want the ability to disinfect themselves and everything coming into our house like in the movie.

Leave a comment below of the craziest thing you’ve done or seen to avoid infection. Don’t forget to subscribe to Child Cancer Mom below!

How My Child Looks Doesn’t Represent Her Cancer Story

I don’t love it when people comment on how Pey looks or how she behaves as being directly related to where she is in her cancer story. I often hear that she doesn’t look sick or you wouldn’t know she has cancer by looking at her. I know people are trying to be nice, maybe trying to be comforting but I can’t help but think “what is she supposed to look like?” I feel many people have a visual in their heads of what a person with cancer would look like. Completely bald, pale, dark circles around their eyes, the picture of fragility. However, this image doesn’t represent the full picture of how cancer treatment affects the people going through it. There are so many variables on how a person (both children and adults) will react, look, behave, and how long they are on treatment. However, tv shows and movies have projected the same stereotypical “look” of someone with cancer for so long that most people wouldn’t expect to see someone being active with rosy cheeks, maintaining their weight, and with no visible hair loss.

Early on in my career, I realized that the sickly child that tv and movies like to present isn’t the whole picture. I have seen children be active and full of energy while undergoing treatment and I’ve seen the other side where the child just feels miserable and wants to watch movies all day. They also don’t lose their hair immediately. I have witnessed parents and children decide to just shave their heads as their hair became patchy. Pey didn’t become a beautifully bald baby with all her scars on full display until about 4 months into treatment. She was predominantly in a good mood, playful, and willing to smile at everyone that spoke to her. Once her hair started growing back, we started getting more comments about how she must be doing so well because she looks well. Unfortunately, it is a long road often over the course of several years to become “cured” or a “survivor.” We are a long way from that as there is still evidence of disease. So how great she looks right now doesn’t represent how she is doing overall.

Since giving up my Gray’s Anatomy obsession many years ago, I tend not to watch non-reality tv medical dramas so I felt a little out of touch if there had been more advancements in how cancer is depicted in tv shows and movies. I have watched shows like Jane the Virgin which in the later seasons saw Jane’s mom diagnosed with cancer. I think they did a rather decent depiction of cancer although not exactly real life. But I wondered what images people are being shown, which led me down a Google rabbit hole. Some articles described the advancements of tv shows and movies using cancer as a storyline. From a time when cancer was not talked about at all to being the focus of a series and everything in between. However, most still follow the same path. Someone gets cancer, immediately loses their hair or shaves it, gets some treatment, may or may not pass away depending on whether it is a main or ancillary character, and then life resumes as it did before. I came across an article “TV and Movies Get Cancer All Wrong” on Vice. In the article, several people who were diagnosed with cancer were asked the worst stereotypes they have seen on tv or in movies about cancer. They mentioned being portrayed as sickly, vulnerable, frail, being bald meant you were close to dying and recovery after completing treatment is simple and life goes back to normal. One responder felt cancer storylines were merely used as a plot device to kill off a character. This instills to viewers the idea that a cancer diagnosis automatically leads to death. However, this is not the case. As more advancements in technology and chemotherapy treatments are made, survival rates have increased. When I began my career Acute Lymphoblastic Leukemia (ALL) had a 5-year survival rate somewhere in the 80% range, but as of 2019 is now in the 90's. Pey is currently on Accutane (yes, the acne medication) several days a month because some genius discovered that it can help certain cancer cells to absorb chemotherapy medications better. Also, some non-operable (i.e. cannot be surgically removed) brain tumors can be managed with chemotherapy. Wouldn’t something like that make a great storyline? A child looks completely “normal,” starts a new chemotherapy regimen, loses no hair, is able to remain in school and extracurricular activities for years. That is a real synopsis of a patient I took care of.

Our child’s cancer stories are intrinsically different not only because they are individuals but there are so many factors that affect their response such as their specific cancer treatment protocols, personality, and support system. Television and movies create these stereotypes and misconceptions about people with cancer which are frustrating. Although they may have improved compared to 30 years ago, there is still a long way to go. In reality, children are who they are. They will have bad days when the side effects of cancer treatment are similar to how it is depicted on tv and in movies. However, they will have amazing days where they are just themselves. Running laps around their crib, racing hospital staff up and down hallways, decorating their hospital room for Halloween, and planning for college. Some will have hair or not, have surgical scars or not, spend a large portion of their treatment in a hospital or not. Every cancer story is unique and should be represented that way. I hope that there continues to be advancements in cancer’s depiction to become more truthful but maybe a few days of daily treatment, weekly treatment, or monthly treatment isn’t exciting enough for tv or movies. Oh, if only they could follow us, parents, as we struggle to get our children in the car on the way to a doctor’s appointment, keep them entertained/comfortable during treatment and all the while balancing all the other things in our lives. Where’s that tv show?

What’s the most frustrating misconception about your child’s cancer story? I am most frustrated when people think her treatment is done because she looks healthy. Leave yours in the comments below.

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The Challenges of Finding Time for Self-Care

Everyone needs a break from the day-to-day. That’s why we take vacations. However, we can’t necessarily take a vacation from our kids. Or at least I can’t. Although, I do have a dream that one day when my girls are older, we can leave them with family for a week to go on an epic adventure. By adventure, I refer to choosing wines from different regions I’m unfamiliar with as I lounge in or next to a pool. However, I digress. For the past 9 months, being Pey’s primary caregiver has been my new job. In the beginning, I struggled to find moments for self-care. It was easy to fall into a routine at the hospital where self-care was the same as meeting basic needs like showering or sleeping. My break from her care was spending the weekend with Big Sister. There was no one to take over to give me or my husband a break due to COVID-19 visiting policies. One of her doctors reminded me that it was important to take a break. I couldn’t bring myself to leave my 9-month old by herself. I already felt guilty enough running to the hospital lobby to pick up my food delivery for 5 minutes, let alone a real walk. It took a lot of convincing to find five to ten minutes to do something just for myself. Having that mental checkout where I could channel my anxiety, work out frustration, and de-stress was such a relief.

Now that we are at home, the schedule feels busier. Between feeds, naps, and picking up Big Sister from school, I now have to juggle all of Pey's appointments. It is overwhelming sometimes just thinking about all the places I have to take her during the week. It’s 24/7 nursing care while balancing all the other day-to-day things. Some days it's busy but manageable and other days I countdown the minutes until my husband is home to help me.

I hear from my family that I need to take a break but I don’t know if they realize how much “taking a break” entails. Going away from home even for a short time takes a lot of consideration and planning. I have to make sure I set aside the amount of formula for Pey’s feeds, program the pump so it only needs to be started, set an alarm of when to feed her and give instructions of what to do if she throws up. Then I have to plan the trip so I can get the most done in the shortest time. The hardest part about leaving the house without Pey is trusting and having confidence that instructions will be followed and no disasters happen. There is nothing like finding out a feed wasn’t completely given because the pump beeped and it was assumed that it was done. Trusting someone to care for Pey in my absence is a big ask.

Although I don’t feel capable of taking a break traditionally, I do take time for myself. If I feel overwhelmed, I work out a couple of hours to myself at the end of the day. I enjoy cooking for my family so having the time to prepare a meal with no interruptions (and maybe a glass of wine or cocktail) feels amazing. If I don’t feel like cooking then I read a book, watch a movie, work on a craft project, maybe take a nap, or whatever feels good at the time. Having that time to myself is a great way to get re-centered. Also having those short reprieves to get out of the house to run errands has been helpful too. If a store isn’t too crowded, I take my time strolling through different areas. I have spent an hour in Joann’s just going aisle by aisle browsing after it took me a mere three minutes to find what I needed from the store. Just having that time to wander and let my brain think of other things besides Pey, is so rejuvenating. I try to take these little moments of me-time.

It’s important when our world revolves around our child with cancer to take time for self-care whatever it entails (legally of course). Being in a pandemic has challenged some of us to rely on our support group in different ways. Although I have plenty of people willing to care for Pey and Big Sister, I don’t love the idea of taking the risk. Luckily, with the support of who I do have around, I have been able to take the time when I can find it. If things were different, I would take in a movie, take a drive up Pacific Coast Highway or go on a date night. If you feel overwhelmed, talk to someone and coordinate a time to get a break even if it’s just running an errand. Get a coffee and just sit in your car for 5 minutes listening to your favorite playlist or podcast. The old adage of taking the time to care for yourself before you can properly take care of others is true. We can’t be the best caregiver for our children when we are at our wit’s end. Sometimes it can be really hard to find that moment for yourself but even if it is brief, it is worth it. What’s your favorite self-care activity to decompress from caregiving? Leave it in the comments below.

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How and What to Talk About With A Parent of A Child With Cancer

I found myself talking and thinking about the language we use to talk about cancer lately. Maybe it’s because I’m writing this blog so it is on my brain more than usual. Maybe because I was involved in one of the most awkward conversations about my daughter’s cancer last week and it is still bugging me. However, this issue comes up a lot. People don’t know what to say so they either say nothing or they say something casually that is well-intended but feels more like a slap to my heart. Then I spend the next few hours to weeks, dissecting why it bothered me so much and trying to convince myself to not be upset about it anymore. So it’s no wonder that people struggle so much when they don’t know what to say or how to say it. As I was researching what information is out there about talking to a family about cancer, I found two articles from Cancer.Net that really made me think about the language I use when I talk about cancer and made me reconsider if I find them appropriate.

I have had a lot of thoughts about how I talk about my daughter’s cancer and how I worded it as I created the Child Cancer Mom website. My aim has always been to describe my child and other children as being children with cancer. This order is more in tune with my thoughts that children are foremost children and their cancer diagnosis is something they are going through. I never want cancer to be the only label they have. When it comes to fighting cancer or battling cancer, my outlook changes based on the situation. I like thinking of my daughter as a warrior against her cancer. Although I’m not a fan of always referring to it as a battle, her personal Instagram handle states it is her versus her cancer, like in “Mortal Combat” or “Scott Pilgrim vs The World.” However, continuing this metaphor creates an issue when it comes to when someone dies as a result of cancer. Often it is referred to as “losing their battle with cancer” which can imply that someone didn’t try hard enough or wasn’t strong enough to overcome their cancer. Which isn’t the case. I like the phrase “gained their wings.” To me, it is more spiritual and the symbol of having another angel to look after us on Earth gives me a sense of peace. There are differing opinions though. Where some may find being a warrior empowering others may struggle with its implications. It is no wonder, with the stigma surrounding cancer and what words to use, people have so many concerns on how to discuss cancer with their friends and family.

I’ve heard many times since my daughter’s diagnosis that a friend or family member wanted to reach out to me but was unsure of what to say. It can be a dilemma as someone wants to check on you and your family but also not to say something that may upset you. I have been in both situations. I’ve had family members ask me how long my child had to live shortly after Pey was diagnosed. It took every fiber of my being to calmly say that I didn’t ask because we obviously were going to undergo treatment to prevent that situation. I’ve had parents at my other daughter’s school not even introduce themselves and ask me to confirm if I’m my daughter’s mother then tell me they heard about Pey’s cancer. They couldn’t think of what to say so they kept summarizing what my mother-in-law had told them. I wish they could have done better as I suddenly felt like I was an attraction at a carnival, something to be semi-quietly discussed as I stood behind them. So I get it when family and friends don’t want to reach out in fear of putting their foot in their mouth or upsetting you. It’s important to understand that words are important and should be chosen carefully. However, friends and family should reach out if you're ok with it. I loved when friends sent me text messages just to say they were thinking of Pey and me and that there was no pressure to text them back.

So if you are wondering what to say when you reach out, here are some tips:

Ask if it is ok to talk about their child’s cancer. This gives your friend or family member the ability to decide if they want to talk about it and how much they want to share with you.

Offer practical support. Offer to send the parent gift cards for food or a store. Ask if they need anything to keep busy or relax like adult coloring books or books to read. I loved when my sister and my best friend would recommend books on a digital library app or movies on a streaming service. When Pey was sleeping, I would read or watch what they recommended. Suggesting a specific way you can help is way better than saying “let me know if you need anything.” I never knew who to take seriously when this was offered.

Talk about what you would normally talk about. This helps your friend or family member feel still connected to things outside of their child’s diagnosis. It is easy for their life to revolve around their child so having these moments of normalcy is refreshing.

Choose your words carefully. Say things like: I’m thinking of you, I’m here to listen if you need to talk, and I’m sorry that this is happening to your family. Avoid saying: I’m sure everything will be ok, don’t worry, and I know what you should do. Phrases like that avoid and dismiss what your friend or family member is saying.

If you still find yourself unsure of what to say, try to put yourself in your friend’s or family member’s place. Think of a time when you were stressed, fearful, or overwhelmed and what helped you feel supported during that time. If you are super stuck, it wouldn't hurt to say that you don’t know what to say but you are available to listen or can help provide meals to take a break from cooking or ordering cafeteria food. I enjoyed my old coworkers coming by our room and asking about Pey’s big sister, where we moved to, if I liked working in the clinic, and just catching up. Once we got over the elephant in the room, I physically noticed that they would seek me out instead of avoiding me in the hallways. It was nice and I appreciated it so much.

If you have any other tips for friends or family members on how they can talk to a parent of a child with cancer, comment below.

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Resources:

Cancer.Net- “Talking with Someone Who Has Cancer”

Cancer.Net- “Choosing Your Words Wisely: Imagery, Metaphors, and Cancer” by Diane Blum, MSW, FASCO

Cancer.Net- “How to Talk About Cancer With Someone Who Has It” by Jyoti Patel, MD, FASCO

A Reminder to be a Participating Member of the Team

My husband was telling me an anecdote about how he heard that a few parents didn’t know that there were other medication options available to manage their child’s nausea and vomiting during treatment. They made the usual conclusion that being on chemotherapy causes nausea and vomiting so it was to be expected that their child would have those symptoms regardless of the anti-emetics (anti-nausea medications) prescribed. They didn’t mention to the oncologist how severe they thought it was and let it go. Apparently, it came up in conversation at their next visit and the medications were changed. The parents mentioned to my husband that they didn’t know there are several medication options to manage nausea and vomiting. 

This stuck with me for two reasons. It made me feel thankful that my child benefits from my and my husband’s background as Pediatric Oncology Nurses. We have questioned doctor’s orders, prevented medication errors, and had open discussions with her oncologist to manage her symptoms both in the hospital and at home. When she couldn’t keep any of her feeds down, I asked for a change in her regimen. During her induction phase and stem cell rescue, she was on three anti-emetics, two of which were every three hours. It was a struggle at home to keep up with it but she was actually gaining weight once we figured it out. The second thing is that we (nurses and doctors) are taught that a parent is the best source of information on their child’s behavior (i.e. what is normal and not normal for them) so we assume that parents tell us everything. However, if a parent has had an experience where a doctor discounted what they said or assumed that certain things are normal, they may not speak up. I once took Pey’s Big Sister to the doctor for an ear infection. She had been in pain all night, had a fever and her eardrum was red (we checked it with a scope at home). The pediatrician took a look at our daughter bouncing around and giggling. He told me that no way she had an infection because if she was really sick she wouldn’t be behaving this way. I told him that it’s just her personality. After, making a big show of not wanting to look in her ear, he finally does and sees she has a pretty significant ear infection. So the moral of this story is to advocate for your child because you know them better than anyone else. 

Use this knowledge of your child to be their advocate and an active member of the team. In at least the last decade, healthcare has focused on having patients and their families (in a pediatric setting) involved in care. In hospitals, the doctors and nurses will “round” (i.e. a brief meeting between doctors and nurses) to discuss your child. Everything that is going on with your child is discussed. Although this is a practice that has been going on for a long time, these “rounds” are being done at the bedside so parents can listen to what is being said and can add their two cents. This is a great opportunity for parents to bring up questions, concerns, or clarify information. Don’t be afraid to participate. I know sometimes it can be intimidating to speak to a larger group of people or culturally it is rude to question an authority figure like a doctor. By asking questions, or even truthfully describing all your child’s symptoms, you may be able to connect to resources that you didn’t know were available to you. Take my example of nausea and vomiting. What I may see as mild nausea, you may perceive as more severe and vice versa. If you think it may be too much, discuss it with your doctor. Together you can come up with a plan and if it’s not working then you can try a different idea. Your child’s oncologist’s focus is treating the cancer so other issues, although important, may fall into the background. So if you have concerns about their nutritional needs, medications, milestones, physical issues, bring them up. The oncologist can change things or connect you to a specialist in that area to help find a solution.

I do have a small disclaimer though. Be respectful as you advocate for your child. It is always disheartening when the rare parent is disrespectful, passive-aggressive, or confrontational and excuses this behavior as advocating for their child. Healthcare providers are human and have feelings so although we can’t respond to behavior in a normal way, believe me when I tell you that your reputation will follow you. Unfortunately, there are families we remember more for their volatile behavior than anything else. 

So I beg of you when you see your child’s oncologist be honest about what you are seeing in your child. If you are at home or in the hospital, write down your questions or concerns so you can remember to ask. Discuss all the symptoms even the expected ones. Be an active participating member of your child’s treatment team. Your child will benefit the most from your participation.

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A Crash Course in Cancer Treatment Language

Not many people are fluent in Medical Terminology despite how much Grey’s Anatomy or House they watch (which shows doctors mainly doing nursing tasks but I digress). Even my husband and I, seasoned Pediatric Oncology nurses, had to stop and ask for clarification on what certain things meant as our daughter’s oncologist explained her cancer diagnosis and plan of treatment. There are a lot of words thrown about and although it may not affect day-to-day life, there are some words that get thrown around a lot. Some of it is actual medical terminology and some may be medical slang. This is important to know so you can be aware of what medical staff are saying around you without any misunderstandings. One example that always comes to mind was an incident when I still worked in the hospital. We were told to call our computers in the room WOWs( Workstation On Wheels) from now on because a parent got upset when she thought the nurse giving report called her a “cow” when actually the nurse was talking about the computer (COW-Computer On Wheels). Another example was when a parent became increasingly concerned because they couldn’t find a line on her child’s access device that apparently was there when the nurses changed shifts. The parent was referring to the nurses calling the child’s access device a “line” and touching the tubing. It took getting the surgeon that placed the access device to come to the room and an expired one the child life team used for child education to get the parent to understand that there was no line on the access device tubing.

So below I have compiled a list of medical terminology you may hear, the medical slang for it, and what it actually is. They are broken down into categories to make it easier for readers. Think of it as the Urban dictionary of medicine. This is not a complete list and your child may not have some of this depending on their specific cancer.

Cancer Treatment Plan

• Roadmap- This is the medical slang for the official cancer treatment guideline for your child’s specific cancer. The name on the treatment plan is usually the original name for the clinical study that was done often decades ago. So everyone refers to it as a roadmap or treatment plan because it is easier. The roadmap dictates the chemotherapy that will be given, how much, and on what days of each cycle. It also includes other medications that will be given, when labs are done, and any other testing is done. Each roadmap is broken down to how long the cycle will be. Some can be as short as 21 days or as long as 48 days. So you may hear: “The pharmacy needs a copy of the roadmap.”

• Cycle- This term is linked to the roadmap. We often talk about it as in how many cycles of each phase of treatment. For example, my daughter had 2 cycles of induction chemotherapy and 3 cycles of stem cell rescue via BMT.

• Induction therapy- This is the beginning of chemotherapy. The aim is to eliminate the cancer cells from the body. Depending on the type of cancer, the goal is to be in remission after this phase. Even if remission is achieved, your child will still receive more chemotherapy to maintain this status.

• Consolidation therapy- This step may follow induction therapy. Its aim is to further eliminate cancer cells.

• Maintenance therapy- This is the longest step usually lasting a few years. The aim is to maintain remission status (usually leukemias) or prevent further growth (usually tumors) again depending on the cancer.

• IT chemotherapy- IT is short for intrathecal which is referring to the fact that something is being given into the spinal fluid. For anyone that has had an epidural, it’s the same procedure. The only difference is that chemotherapy medication is being given. This is done when your child is getting a lumbar puncture but after the oncologist gets a sample of the spinal fluid to send to the lab. So you may hear: “The LP and IT chemo will be next Thursday.”

Access Devices- how someone is getting fluids, medications, or chemotherapy into them and blood for labs out.

• Line- Slang for an access device. the most common access devices are below. So you may hear: “What kind of line does he/she have?”

• PIV- Short for peripherally inserted catheter. Often referred to as an IV as well. Usually in the bend of the elbow or back of the hand. It is less often used to give chemotherapy through because it has to be put in right before the medication is given and the nurse has to be able to check that blood can be pulled out of it before and after. If done frequently, the veins get tired of being poked and it becomes harder and harder to get a good one.

• PICC- Short for peripherally inserted central catheter. Usually put in at the bedside instead of OR and put in the upper arm. They tend to give nurses a hard time the longer they are used.

• CVC- Short for central venous catheter. AKA Broviac or Hickman. These are placed in the OR by a surgeon. They are usually on the right chest. These are usually the first option placed for long-term therapy because they can tolerate high-pressure infusions.

• Port-A-Cath- AKA port. These are placed in the OR by a surgeon as well. The difference between a Port and a CVC is a Port has to be accessed, meaning a nurse will need to insert a needle through the access point of the port in order to give medicine or fluids through it or to draw labs from it. The good thing about this is when the Port is not in use, it does not need to be accessed. So your child will not have anything sticking out of his or her chest. Your child can shower, bathe, or swim without having to worry about the line or dressing getting wet. Also, since there is nothing sticking out, there is no risk of the line getting accidentally pulled out. Port-A-Caths are usually placed during maintenance therapy.

Feeding Support- how a child gets nutrition when the normal way won’t work (extreme nausea, vomiting)

• Nasal Gastric Tube- AKA NG. It is a flexible tube that is placed in the nose down to the stomach. A special pump is used to give a child formula so they can still have proper nutrition during treatment. Medications can also be given through it.

• Gastric Tube- AKA G-tube. Placed by a surgeon, this tube is placed through the abdomen into the stomach. For children, they are low profile meaning when it’s not used for feedings or medication, the extension can be removed and children can go about their routine. There is less risk for pulling it out because it can be hidden under clothes.

• TPN- Short for total parenteral nutrition. This is given through a child’s access device because of all the vitamins and electrolytes it is irritating to the veins when given through a PIV. If a child can’t keep anything down, doctors will order this so they can still get nutrients until they feel well enough to eat again as normal.

• PPN- Short for peripheral parenteral nutrition. The same as above but with fewer nutrients so it can be given through a PIV. Usually the last resort if a better line is unavailable such as being treated for a line infection.

• Lipids- This is basically liquid fat that can be given through a line that is not a PIV. Our body needs fat to be able to absorb some vitamins. So this is usually given with TPN.

Tests and Imaging:

• LP- Short for lumbar puncture. Again think epidural for those of you that know what that is. The oncologist will collect spinal fluid to test for free-flowing cancer cells, infection, and other things. This is usually done at the beginning of each cycle.

• MRI- Short for magnetic resonance imaging. This test is used to take really detailed pictures of the body. I like to describe it as when you get your meat sliced at the deli part of the market. Your oncologist picks the meat and the radiologist picks how thin or thick to make the slices. The machine is so detailed they can actually take these picture “slices” both up to down and side to side.

• CT- Short for computed tomography. This is basically taking multiple x-rays of an area and a computer makes it 3D. It is a very quick and easy way to see structures however less detailed than an MRI.

• GFR scan- This means renal glomerular filtration rate scan. This is a study done in nuclear medicine where a radioactive tracer is injected and they see how long it takes for the kidneys to excrete it. So basically they’re checking to make sure your child’s kidneys are functioning properly after all the chemotherapy. It can be done two ways and depends on your medical center. Some will have your child sit in the imaging machine for about an hour after the tracer is injected and the machine estimates how much of the medication is excreted. Other medical centers will do imaging for a few minutes after the tracer is given then have your child’s blood collected a couple of times over the course of 4 hours to see how much is left.

• ABR- Short for auditory brainstem response and checks for hearing loss from chemotherapy. This specific test is usually done for small children that can’t participate in a normal hearing test. Your child is sedated and the audiologist (hearing doctor) hooks up a bunch of wires to your child’s head and a pair of earphones. They play tones and check for brain stimulation in response to the sound. It’s a more detailed version of the hearing test done on newborns.

• Clean- refers to negative results or nothing be found on labs (ex. blood cultures) or imaging studies.

Miscellaneous

• Flush- This is slang for flushing the IV tubing or access device with NS to make sure all the medication gets into your child or to clear the access device of whatever was done like after a blood draw. It also refers to the syringe filled with NS that will be used to do the flushing. So you may hear: “ Oh, let me grab a flush for that.”

• NS- This is short for normal saline. In the most basic of definitions, it is a salt solution that matches our blood without disrupting anything. We use it for IV fluids, boluses, and is in syringes to flush the tubing of medications.

If there is any other medical terminology or medical slang you want help figuring out, leave a comment below.

How I Tried to Feel Connected to Home During Lengthy Treatment Cycles

One of the hardest parts about going through a cancer journey is its effect on the whole family. The most basic being a once cohesive family now operates separately. I missed coming home to both my children, preparing dinner, or just casually sitting outside watching Big Sister play. The simple mundane moments of togetherness seemed like a different lifetime and I felt like I took them for granted. My daughter missed me helping do her hair in the morning and our after-school Starbucks trips every Friday. I missed sleeping in my bed, cooking for my family, and being able to hug them. Pey missed her sister. My husband missed coming home to a full house and caring for all “his girls.” Being separate was isolating. There were plenty of offers for help but going through this during a pandemic made help almost impossible.

Pre-pandemic cancer journeys are intrinsically different from those of us that have had to do this during. Visting policies allowed both parents and siblings to be in a child’s room. Extended family members or friends would stay with the child so parents could have a break. There were playdates with siblings, cousins, and/or friends. I remember walking in on impromptu potlucks in a child’s room. The support system for the family was always apparent. To the point, that there were even times I had to talk to families about limiting visitors. This doesn’t even include all the support programs and events that were available to families from non-profit organizations. It was a very different world from what I experienced, to say the least. Due to strict visitation policies, Big Sister was not allowed to visit at all. Only one parent or guardian could be at the bedside at a time. Leaving me to walk with Pey alone to the OR for several surgeries (including her two brain surgeries) except for her nurse. I bring all this up because as much as we wanted to rely on our family and friends for help during this time, it was almost impossible. What made it bearable was that our friends and colleagues were the ones taking care of us. I was often given their free meal that was being provided to the staff or asked if I wanted to order meals with them. I was brought coffee, meals, and snacks. Although we were being taken care of, being apart from half of my family was difficult. So we were challenged to figure out how to stay involved in each other’s lives while being apart. 

I was very fortunate that all of Pey’s hospital stays were within walking distance of where my husband works. Most of the week, he would have his lunch break with us or stop by real quick after work before heading home to Big Sister. On Friday nights we would have dinner together before we switched out. A luxury, some parents didn’t have but my husband was able to accomplish by wearing his work badge. We FaceTimed a lot. Even if we really didn’t have much to say, I would watch him drive to and from work, cook dinner, or wash the dishes. Sometimes, we even coordinated a time to eat with each other. After putting Big Sister to bed, we would just talk or do our own thing but still stay on the call. Although it wasn’t the same thing as being in the same room, it helped us feel together.

Staying connected to Big Sister was much tougher. She had recently turned 4 years old when Pey was diagnosed and didn’t really understand why Mommy and Pey were always gone. It didn’t help her attention span for FaceTime left a lot to be desired. I would talk to her while staring at the ceiling or carpet. Eventually, she realized that I was a captive audience to her games. I would be the movie screen for her dolls or would ride with them in her playhouse elevator. She attempted a few times to play hide and seek with me which didn’t work out as well as she had hoped. So I tried to focus on creating planned activities for us to do together while I was home briefly for part of the weekend. We would talk about it at the beginning of the week and then I would order supplies for a science experiment (she was really into those at the time), baking treats, spa days, or movie nights. I also started writing her letters twice a week for my husband to take home with him. I would tell her how much I missed her and how much fun I had doing whatever activity we had done. At night we would FaceTime so I could watch as she brushed her teeth for bed, was read a book, and sang to sleep. This little emotional connection to home made me feel like I wasn’t totally missing out on her day. When Pey and I had to move to San Diego for over a month of treatment I realized I would miss her last day of preschool, TK orientation, and her first day of TK or “Big Kid School” as she calls it. To feel a part of the moment, I took her with me to pick out a backpack and lunchbox. The weekend prior to her first day I surprised her with a personalized pencil box with all her school supplies in it. When she casually brings up the time when we were away, she tells me that she missed us but then reminds me about something we did together. I know I’m lucky that she has been flexible throughout the last 10 months and being open with her when she asks questions and having special moments with her helped our bond.

Being separated from part of your family to be with a child with cancer is difficult for any family regardless of the circumstances. The feelings of isolation are intense and the stress of being the caregiver or the one in charge of everything else takes a toll on a relationship. Finding the time and being emotionally available to be present for your other children can be challenging. Adding the restrictions in place by a global pandemic, made this even more difficult because we had no option for family and friends to stay with Pey or for Big Sister to visit to have family time. I responded to these challenges by using FaceTime to see what my husband and daughter were doing. I also focused my energies on creating special moments for Big Sister to show her how much I missed her, loved her and how special she still was to me.

So my advice would be this: think of what is important for you to feel connected to a partner and any siblings. Use technology to your advantage like playing games ( I do not recommend hide and seek), eating dinner with them, sharing a coloring book, sending e-mails, streaming the same episode of a favorite show or movie to discuss later, and being a part of bedtime routines. When you are home plan simple fun activities to do one on one or together as a family. Be present (i.e. mindful) and enjoy every minute.

The Eternal Struggle for Self-Compassion

Hearing the words that confirmed my daughter had cancer, immediately flooded me with competing emotions. Fear and sorrow were the most powerful at that time. As time passed, those feelings began to ebb and flow depending on the day and are singularly about her. Although they can be debilitating, they are much easier for me to manage. My feelings of guilt, however, came later and have been the most challenging. I think what makes it so difficult is, as time marches on there are more and more things to feel guilty about. The list of all the things that make me feel guilty and why could probably take up several sheets of single ruled paper. However, for efficiency’s sake, I’ll condense it down to my top three.

The first thing I feel guilty about is whether I played a role in some dumb cell going rogue to cause the golf ball-sized tumor in my daughter’s brain. There is nothing like cancer to make you question almost every decision you have ever made in your entire life. Was it a medication I took prior to getting pregnant or after? Did I stand in front of a microwave for too long? Did I fall in love with a man with some messed-up genetics? OMG, what if I’m the one with the messed-up genetics? Is this karma for something I’ve done in a past life (magical thinking at its finest)? The list can go on and on but it all boils down to one answer. We’ll probably never know what caused her cancer but it wasn’t anything I did.

Another area that brings tremendous guilt was not realizing something was wrong sooner. I think back on those months prior to her diagnosis and can spot all the signs that something was wrong. However, when we were living it, all the symptoms had reasonable explanations: teething, gassiness, not pushing her enough to work on developmental milestones, and big sister's recent cold. They were all pieces to a puzzle that we didn’t know we were working on. If we had been able to figure it out sooner, would it have made a difference? Maybe but it doesn't change the fact that she has cancer.

I feel guilty for the impact Pey’s diagnosis has had on her sister. The plan to increase her time at preschool to be better prepared for elementary school and her own enjoyment became impossible with a lack of transportation and financial changes. I missed her last day of preschool and the first day of TK. Above all, I feel guilty that she sometimes expresses that I chose her sister over her. My week-long hospital stays for months, left me struggling to find ways to show her that she was valuable to me now as much as ever.

So with all this guilt lying about and tormenting me, my therapist told me I needed to channel Ariana Grande and say “Thank you, Next” to those feelings. Maybe not in those words, but that’s what I heard. Acknowledge the feeling, push it away, and move on to the next thought, idea, or activity. She recommended I work on my self-compassion. Being self-compassionate is treating yourself with kindness and understanding when facing your perceived (or non-perceived) shortcomings or failures. So that is what I aim to do when I start feeling guilty about these things.

When the little nudge that I played a role in causing her cancer, I tell myself “I didn’t do this.” The treatment I was on for IUI and the medications I took during my pregnancy to keep her in the oven until she was fully baked, didn’t cause this. If it had, my doctors wouldn’t have had put me on those medications. When my voice doesn’t quell the feelings, I turn to my support team. Hearing them tell me there wasn’t anything I did or could have done to prevent it, is the reassurance I need. It is important to remind myself that it is way easier to look back with the knowledge of her tumor and see the signs (hindsight being 20/20 and all). When I recognized that something was really wrong, I consulted pediatricians I worked with who validated the nursing care we were providing at home should have helped. They agreed that I needed to bring her in to be evaluated. Lastly, I tell big sister that I love her and miss her all the time I was away. I wrote her letters, listened to her being read to at night, and watched her brush her teeth over FaceTime. I often consulted with our Child Life Specialists about how I should discuss the diagnosis and explain my absence. I involved them when she saw her sister after her first surgery with all the tubes and had her sit down with one when she started asking more questions.

Guilt doesn’t care about what we’ve done for ourselves, our children, or our families. It likes to be the overly judgemental critic analyzing everything. I can’t say it will ever go away because mine hasn’t but I do try to prevent its power over me. For every sharped tongue criticism, I list the things I did do in that scenario. I list all the good things I do for my family. Find a mantra that works for you, mine is “You’re doing great, Mama.” Get a sticker and put it on your water bottle, write it on a post-it and put it on your mirror, set it on your phone as a daily event because seeing it every day is the reinforcement you need. Let the guilt feelings go and replace them with the kindness you need to hear. The kindness and understanding you give to others.

So I’ll start your list for you: you are a great parent, you do the best you can every day, you give the best comfort to your child and you are not responsible for your child’s cancer.

8 Things To Do That Will Help You Long-Term

When my daughter was diagnosed last year, I was immediately overwhelmed. I was handed a folder with tons of paper, I was being popped in on by social workers, different doctors came by to speak with us and the calls to family were mortifying. I have a background in this area and I was lost and I imagined how difficult it must be for other families out there. These were the first things I did to relieve some of the burdens and organize myself for the long run.

1.  Start A Phone Tree

The thought of calling my family was daunting. Every retelling of the story broke my heart all over again. Designate people to spread the information you want to share. Instruct them whether you are ok with people reaching out to you and how to do so. Do you want people to contact you or give you space? If you don’t mind interaction would you prefer text messages, email, or phone calls? By doing this, you can remove the emotional trauma of re-iterating your child’s path to diagnosis repeatedly.

2. Create Your “Brain” Binder

A “brain” in this instance is referring to Nurse slang for the paper we write all our patient’s background, care needs, and medications on so it is readily available.  When your child is first diagnosed there is so much information and paper given to you that it is easily overwhelming. Your parent brain, which may have been a steel trap before, is now a sieve with large holes. Making a binder that organizes all this information, can help you keep track of information like important phone numbers, care recommendations, procedure and treatment dates, medications given, and education specific to your child’s needs. Mine traveled with me to hospital admissions, clinic appointments, and consultations. You can check out my “Brain” binder here. This takes a lot of pressure off of you to remember all this information, especially as the weeks and months start to blend together.

3. Write Down Your Questions Then Ask and Repeat Back

Firstly, don’t ever be afraid to ask questions. It is important that you understand what you are being told. Secondly, questions we have about our child’s care don’t always come to mind when the doctor or other staff are in the room so write them down. For office visits, keep an ongoing list of your questions on your phone or a blank page in your “brain” binder. For hospital stays, pack a whiteboard marker. Use it to write your questions on the whiteboard in your child’s room which makes them highly visible. This is especially helpful if there is more than one caregiver. It helped my husband and I keep track of the questions we had when we were trading off for the weekend. Lastly, repeat the answer to your question in your own words back to the provider. This is helpful for a couple of reasons. The first is if you misunderstood, you can get corrected. Secondly, it helps you retain information better. It also confirms to your doctor and nurse that you did understand or in the future how to better explain things to you as an individual.

4. Partner Discussion

This is one of the most important conversations I have ever had with my husband. We took a moment after we were told of our daughter’s diagnosis to take a breath and discuss what the next year or so of our life would entail. We discussed that we needed to lean on each other even when we felt isolated, who would be the full-time caregiver for her, how we would share responsibilities, who we will share this information with, how we could find time to be together, how we can support our eldest daughter during this time and our beliefs on quality of life. This really helped us be on the same page. It was important to be open and honest with each other with the understanding that it was an ongoing conversation.

5. Set the Tone

Children of any age mirror their caregiver’s emotions. How you express yourself when you are stressed, angry, upset your child will do the same. So my best advice will be to “fake it ‘til you make it”. I’m not saying you are not allowed to cope however you see fit but in front of your child demonstrate how you want your child to act. In our experience, children who were the most anxious about their care had parents who were equally as anxious. For example, your child might have to get shots during their treatment. Instead of saying, “it’s not going to hurt”, “toughen up”, or “can we please give you your medicine?” try to say something more truthful, positive, and constructive. I would recommend, “ I know you are scared but this is important to help you feel better. It’s ok to cry or squeeze my hand as hard as you can and I’ll be right here with you but we need to stay still so we can get this done. Can we be brave together?” I do this with my eldest when it’s flu shot season. Your follow-up to a procedure is also important. Instead of saying “my poor baby. I know they hurt you. It’ll be ok” say something like “ You were so brave. I knew you could do it. I’m going to tell (favorite person) how brave you were today.” This way you aren’t criminalizing the staff and feeding the fear but acknowledging that they got through it and praising how well they did. My infant daughter can’t be reasoned with like this, so I did other things. I distracted her with kisses or toys and spoke to her with a neutral tone. When the procedure was done, I would always give her a big smile, hug her and tell her “Yay! You did it!” I guess what I’m saying is try to normalize these things even though we know they are not normal. How you set the tone can really influence how your child approaches treatment.

6. Utilize Support Services

Get to know all your support services and utilize them. Your social worker can be someone to talk to about what you are going through and can help find resources to help you emotionally or financially. Chaplain services are available for bedside prayers and can perform some rites depending on their background. A dietician is a great resource to discuss your child’s nutritional needs. If you have issues or questions about formula or your child’s eating habits, this is your go-to person. The Child Life Specialist (CLS) is one of the most underutilized members of the team. They are most known for providing toys or activities for your child but offer so much more. Their expertise is in child development and providing age-appropriate coping strategies. Ask them about coping, involving siblings, how to discuss cancer diagnosis with your child and/or siblings, organizations, and services available to you. Your CLS is a fountain of information, so take advantage. Lastly, I would recommend some form of therapy or support group for yourself or other family members. Being able to speak to a third party about what you are honestly feeling and discussing strategies to manage these feelings is a good option for anyone. These services are a great addition to your care team.

7. Rely on Your Support Group

Relying on your support group doesn’t always have to be talking to someone about how you are coping. If your family and friends ask what you need, take them up on their offer. Ask for meal delivery service gift cards to give you a break from cafeteria food. My aunt would send our other daughter coloring books, science kits, and craft projects. I scheduled mommy time by creating a novela club with my sister and best friend where we discuss episodes of a telenovela we streamed during the week. The availability of your support group may be different during a pandemic, as I experienced, but think outside the box.

8. Self-Care

The first time I got asked what was I doing for my own mental health. I laughed and said I don’t have time for that. I was sternly told “Ashley, you know better than that.” it was true. Nurses will always tell parents and caregivers the old adage of you need to care for yourself in order to care for others. It’s one of those sayings that is easier said than done. So like all self-sacrificing parents, I completely ignored it. It wasn’t until my therapist asked me what prevented me from taking 5 or 10 minutes for myself when my child was asleep. She told me to try to take a moment- go for a walk, read a book, listen to music, basically something that I enjoyed for just 5 minutes. It was a struggle at first to dedicate to this time but eventually, I realized I felt better. I got tired less quickly, was less cranky, and could do more with my child.  So I challenge you, to take at least 5 minutes for yourself.

Blogging My Family Cancer Story to Help Yours.

If you’re here odds are you are someone or know someone with a child with cancer, surviving cancer, or gained their wings. Cancer hits our families like Thor’s hammer and from day one we are expected to comprehend and make decisions on our child’s life. It was tough for me not to just cry and so to be able to cope and process all the information, I slipped into work mode. Immediately, I was able to cordon off my mom's brain hysteria and deer in headlights gaze to be able to think through all the information given to me. So what is my work mode you’re asking?

I am a Registered Nurse, specifically in Pediatric Hematology/Oncology. This means that the greater part of my 12-year career has been caring for children with cancer and blood disorders. To make things more interesting (read what are the odds) my husband has also spent most of his 16-year career in the same specialty. Our journey is that of a rainbow baby conceived with IUI, born at the beginning of a pandemic to two pediatric cancer nurses, who was diagnosed with a rare brain tumor at 8 months old. Our colleagues had to deliver the diagnosis and care for us. Due to Covid-19 restrictions and our other child, my husband and I were forced to lead separate lives for 10 months.

So this is what my blog and I offer you, dear reader. I have experience caring for families handling a cancer diagnosis of many types for many years. I have experience caring for my child with cancer now.

I know what it’s like to give up your career to care for your child. I witness my husband taking on the full burden of a now one-income family. I struggle with my mental health while supporting positive coping with my eldest child. I find the quiet moments and the crazy times both exhausting and beautiful. All these experiences, professionally and personally, I offer to you as a guide, resource, validation, and hope.

So I leave you with something I’ve always told my families: Every day find and celebrate a good moment, regardless of how big or small, because our child is still a child foremost. My daughter waved goodbye when I said bye to someone today. That is a 9-month-old milestone and she figured it out at 18 months. I cried.