The First Week of Diagnosis
While you are still adjusting to your ‘new normal’ in the Emergency Room, the hospital staff is busy preparing an inpatient room for you. You may end up in Pediatric ICU if that is the only open bed, or perhaps in the Pediatric Oncology Unit. Once you have arrived in your new room, make yourself comfortable for a little while, as you will likely be staying for approximately 7-10 days. In that time, there is a lot to learn about the diagnosis and treatment. You also will be absorbing the culture you are now a part of. Getting organized will help you feel like you are not on the tracks, but are at least on the train. You may not be driving the train, but at least you are on it. Here are some checklists to help you start adjusting and get organized. Remember that friends and family will likely be eager to help. The only thing you, as the caregiver, absolutely must do is comfort your child. Please outsource whatever you can–your friends and family will thank for the direction on how they can help so do not hesitate to delegate.
What to Expect
during the first week of diagnosis.
Beyond that terrible word “cancer”, it’s likely that you will have to wait at least some length of time to truly narrow down what the specifics of the diagnosis are. We all cope with this in different ways. Regardless of how you and your partner have typically interacted in the past (I tend to research, plan and organize everything, while my husband tends to fly by the seat of his pants) try not to judge yourself or set expectations for how you “should” be getting your mind around this new information. Do what feels best to you, for some, like me, I was very content to just listen to what the doctors said, and had no desire whatsoever to subject myself to the vastness of internet research. For others in the hospital, or even in my own family, doing their own research and understanding what little information we had was a comfort. Just be very careful what sources you consult, and how many other caregivers you talk to at this time. You will hear over and over that each child is different, and it gets really frustrating when your doctors can’t ever seem to give you a definitive answer of what to expect. The truth is, they can’t give you any better answer than to “wait and see”. They can give you statistics, averages, and common side-effects. But every child really does have their own experience with treatment.
We highly recommend that you start your journey at Chemo & Crayons. We have vetted the information for accuracy, and we have done our best to give you a clear picture of the most likely symptoms, side-effects, and treatment courses. Our online network of caregivers is a great sounding-board to get an idea of what to expect. So, before you convince yourself that one phase of treatment or another is going to be terrible or a breeze, just remember, each kid is unique…and so is each round of chemotherapy.
Getting to Know You:
Other parents in the hospital can be an amazing source of support. They understand what you are going through, will be able to talk flushes and nurses, and will walk this journey with you. Of course, it can be a bit awkward to have that “so what are you in for?” chat, but often you will pass the same parents a couple times a day, and a snatched conversation about popsicles can be the start of a beautiful friendship.
Conversely, you may also hit a point when you have met so many new people on your cancer journey that you just run out of room to care about them all, and need to institute a moratorium on new relationships. Remember you are spending every ounce of energy on making sure your child is comfortable, and you need to do what is right for you.
Cancer is exhausting, every aspect of care and treatment is exhausting, and the rest of your life is exhausting too. It’s okay to take measures to protect yourself and back away from people when you need to. The wonderful thing about creating a community of people who understand childhood cancer is that they will know how overwhelming it can all be, and will support you taking a break whenever you need one.
You are now an Advocate:
It may be a role you know well, or it may be a role you are very uncomfortable with. But like it or not, you are an expert on your child, and will be called upon to exercise that expertise.
In the hospital, one of the first advocacy tests is the nighttime care of your child. I hope that you and your child sleep like bricks, make it through 2 am diaper changes without so much as a snort, and aren’t bothered by loud noises, laughing, and lights. BUT, if you are like most people, sleep is easily interrupted and difficult to return to. Nighttime inpatient sleeping is a serious challenge. Start by setting expectations with your nurses at every shift change. Depending on how long your first stay is, you may or may not know or see the same nurse twice, so make some notes for yourself on how your child’s day generally goes, and what procedures you prefer to follow at night. Review these with your nurses.
For McKenna, nap times came on suddenly and at different hours, so I made a little sign to alert the nurses if she was sleeping so they entered with more caution. For the night, I would ask what time all the different medication administration and vitals checks would be and then ask that we consolidate as many as we could to ensure longer stretches of uninterrupted sleep. I also asked for flashlights and stationed them around the room, and left only the softest lights on after bedtime. I then asked the nurses not to turn on any additional lights unless absolutely necessary.
Other families may be an excellent resource for information that may positively impact your child. For instance, McKenna didn’t like taking her anti-nausea medication Zofran(R) because it tasted terrible. We found out from another family that Zofran(R) was available in IV form, and the doctor was happy to accommodate this change. Remember, if there is a medical reason why something must be done a certain way, the staff will have no problem explaining that to you. But it is entirely possible that a protocol can be altered to accommodate your child, and there is no way to know until you ask.
Your job is to maintain as happy of a kid as you can and to make your lives in the hospital bearable. The staff understands this, but can only make changes that they know are helpful, so speak up! This is also a great use of your new friendships with other caregivers–talk about what works for them, how they get through the nights, and what modifications they have asked for. It’s always easier to ask for something you know is already possible.
You will likely have at least one surgical procedure while you are inpatient. Whether that is something as (relatively) easy as a spinal tap, or as complicated as brain surgery, nothing can prepare you for that first time watching your child fall asleep under anesthesia.
For me, that was when I lost my composure completely for the first time. Up until then, I had focused on taking care of my girl, making sure she had everything she needed and making her as happy as I could. In the operating room, it was like being transported to another planet. Even though I held her hand and stroked her hair, and everyone was smiling with their eyes over their masks and speaking calmly to her, she still cried and begged to leave. She then fell asleep, and I had to leave her alone. It was more than I could stand, and I burst into tears right there in the operating room. A poor nurse had to lead me outside, and encouraged me to ‘let it out’, something I’m sure she had done with dozens of parents before. That first spinal tap and lumbar puncture lasted less than 15 minutes, but knowing my baby was alone was torture. She was still asleep when she met us in Recovery, and she had no idea that we had ever been gone, but I knew.
Later when she had her port inserted, the nurse informed us that we were to wait in the room while they wheeled my awake daughter to surgery and put her under anesthesia without us. No way, niet, nine, nope, uh uh, never while I’m breathing. Fortunately, I had already talked to one of my chemo parent friends and I knew that the staff had tried to do the same with her daughter. She explained that the two of them had a routine that kept her daughter calm for going under anesthesia and asked to go with her to the operating room. Fifteen minutes later, in scrubs, gown, and booties, she was escorting her daughter to surgery just as they always did for spinal taps. So I made the same request and after a little discussion among the doctors, I too donned scrubs and gown and booties and entered the surgical suite where I held my baby’s hand and sang her favorite song as she fell asleep.
Sharing the News:
Before you have even had a moment to process the shock, you will be forced to shock others. If you can outsource this task by all means do! Make calls as necessary starting with those most important to you logistically, and save the more emotional calls for a rare moment alone. Start with making arrangements for childcare for other children, and for a place to sleep if necessary. Then, if you must, make the call to your boss.
Family members will be frantic to help, so consider enlisting their support in making the necessary calls and fielding in calls from concerned friends and family. Use them to set up Facebook or care pages so you can keep people informed without it being too taxing on you unless you find the outreach comforting.
If you and your fellow caregivers work full time, the first week can be very taxing. A cancer diagnosis is never expected and in our experience, employers aren’t heartless, and many companies and coworkers have supplied excellent support and help.
Discuss with your support system how you would like to initially structure your child’s care. One of the things that most bothered me in those first few weeks was how no one could give me an answer of what to expect and what I needed to do. As always, that answer varies by diagnosis and by the child, but here is a good place to start the discussion.
Assuming the first inpatient stay lasts 10-14 days, who is available to be with your child at those times? Depending on the age of your child, you/they may or may not be comfortable being in the hospital alone. But depending on your work situation, you may not have a choice. Discuss scheduling as much as you can so you can work collaboratively with the nurses and hospital volunteers to minimize the amount of time your child must spend alone, if at all.
What is our schedule going to look like for the first 6 months? For many diagnoses, the first six months is one of the most intense periods of at least weekly hospital trips. Which caregiver(s) are most flexible, and able to attend those appointments? We highly recommend having more than one caregiver attend especially if the child is young as clinic days can exceed 8 hours. Having two people available means not dragging the child with to fetch water or lunch.
Can work be flexible at those times? Clinic sessions are often scheduled on the same day every week with limited exceptions, speak with your employer about flex time or shifting schedules to cover.
Explore extended leave policies with your Human Resources Department. You are guaranteed three months of unpaid leave by law in most states. However, your family may not be able to afford that length of time. Ask your employer about donated leave time from your coworkers, flex time, work from home options, and short-term disability.
Ahh, the binder. How I love a good binder! In this first week, you are going to be hit with an incredible amount of information, both written and oral. If the hospital does not provide one, pick up a binder and set of dividers as soon as you can. The nursing desks have three hole punches, and you can quickly and effectively organize yourself and keep track of all the lengthy diagnosis and side-effect information, consents, maps, medications, labs, and contact information you need.
Or better yet, have a friend go to our website Chemo & Crayons and purchase one already organized for you (one less thing on the “To Do” list is always great). In our supplemental section, we go through a lengthy list of suggested tabs to help you get and keep (literally) a grip on all this new information.
What to Bring: The Basics
Most of us don’t come to the hospital planning on staying very long, so here are a few things you will need.
If you live far from the hospital, find out about accommodations nearby. The local Ronald McDonald House can be a lifesaver, especially if you have other children that need to be kept nearby, for a decent nap, and to transfer care between family members.
The hospital will likely be able to provide mini toothbrushes with brush heads suitable for a horse, and baby wash. But having the scent of home, your own shampoo, a razor, and a moisturizer is crucial to help maintain a sense of normalcy. You will be doing an insane amount of handwashing from now on, so send someone to Rite Aid and get some Gold Bond antibacterial lotion. This stuff is amazing.
Comfort is king, and depending on the age of your child, you may be spending half the night contorted with a hand in a crib or in a twin sized bed with a pillow behind your back and none behind your head. Grab some decent looking slippers, leggings, an oversized sweater or sweatshirt, and several pairs of pajamas. The hospital temperature changes instantly and without warning, and the floors are insanely cold, so layers are best.
Bring a comfortable pillow and twin sheets if you have them. Extra blankets and afghans are always nice. But remember, you will leave the hospital eventually. Everything you bring in you will also have to take home with you. Try not to bring the king-sized velvet throw unless your child insists.
What to Bring: For Your Child
Maintain a sense of normalcy, even in an upside-down world.
Pajamas in favorite characters or colors. One thing I’m sure you have noticed about kids is how sensitive they can be when they are sick. Now multiply that by 1,000 and add the fact that they have zero control over anything that happens to them for the next few days. Later, we will talk about getting a handle on discipline in this new normal, for now, buy 7 matching Queen Elsa or Teenage Mutant Ninja Turtles pajamas.
Reynold's Press n' Seal:
Costco sized. It is similar to saran wrap but isn’t sticky until you adhere it to something. This stuff is now your new best tool. For inpatient use, you can wrap up wet things to take to wash, cover toothbrush heads to keep germs off, and most importantly, wrap a PICC line or other IV so your child can take a bath!
It wasn’t easy with the IV line, but thanks to the aforementioned Press n’ Seal, we got to establish a little normalcy in our inpatient bedtime routine. For a half hour every day, we could get out of bed and splash and play and pretend we were home.
A Little Red Wagon:
Our hospital had one that patients could use, and we abducted it for the entire stay. McKenna was too little to be left alone and hates staying in one place, so she came with me all over the hospital on walks, to the cafeteria (when it wasn’t crowded), and up and down the halls to meet new friends. I even mastered toting the wagon and the IV trolley while activating doors with my feet.
McKenna got very interested in painting as a result of our inpatient stays, so whenever I got the chance, I’d ask people to look around for things she could paint to pass the time, including birdhouses, cardboard boxes, and sun catchers. The hospital may have a selection of basic coloring supplies, but it’s always an easy thing to ask for when people ask what you need.
McKenna liked ramen noodles, so I figured out how to make them in a microwave. We had access to a mini fridge, so we stocked up on yogurt, fruit, and anything else we could think of to get her to eat.
A small whiteboard that you can attach to your door can give great information to nurses and unexpected visitors that a nap is happening, that you have gone for a stroll in the hallway, or that a meltdown is near.
What to Bring: Technology
For you, your family, and your support network.
Grab a cheap one from Amazon, then you will know where everything is, and will be able to charge multiple devices at once.
Cell Phones and Backups:
DO NOT give out the room phone number. Remember while cell service is inconsistent in the hospital and your friends and family are anxious for news, your number one priority is the healing and safety of your child. Imagine the room phone ringing at 30 decibels 10 minutes after you finally got your angel to sleep. Do not make this mistake. Facebook messenger or other messaging services are even better than texting because you can group message without annoying anyone too terribly, and it’s easier to disable the notification chime.
The hospital may have a tablet or a DVD player you can borrow. Most families consider them a lifesaver for the variety of age-appropriate games and options for TV and movies when the hospital supply becomes redundant. You may find your child likes to watch or play a certain game through stressful procedures.
There are many options on the web for free web pages that give updates to friends and family members, and it has the huge benefit of allowing you to post one update, in greater depth than Facebook would permit. You can post articles and contact information in this safe place. This will hopefully shield you from some of the duplicative contacts wanting to know how your child (and you) are holding up. We quickly popped up the number to the gift shop, but with a caveat that fresh flowers were not allowed (balloons, of course, were always appreciated). We explained why we weren’t giving out the room phone number and posted some information on leukemia for those who wanted to know more.