On January 8, 2021, Presley was diagnosed with leukemia (ALL). She had never really been ill and or even been on antibiotics, so we were not prepared. She had only been sick around 36 hours when we found ourselves admitted to the hospital for an indefinite amount of time. We were very blessed to have family close by and friends within the Down syndrome community who jumped into action while our heads were still spinning in disbelief.
Now, seven weeks later, I wanted to put into writing some of the things that I found helpful in hopes that maybe it will help another family when everyone asks "how can I help" or "what do you need"? At the time, I didn't know what I needed, but thankfully I had a village who did.
My amazing friend Tricia began researching. She juiced organic beets and carrots for Presley to begin drinking while still in the hospital. She brought me a homemade smoothie every morning to help me get through the day. She brought a variety of applesauces, protein bars, Lara bars, salads, nuts, coconut treats, yogurts, fresh fruit and vegetables and bottled water. The hospital did not provide meals for the parents, so she was taking care of me when I didn't.
She also washed a stuffed animal and covered it with essential oils, as well as sending a variety of oils to me. We have always used essential oils, but it wasn't something I grabbed when headed to the hospital. I hope everyone has a Tricia in your tribe. Thank you my friend.
Prayer chains were good for my soul as churches and people around the entire globe began praying for my sweet daughter. Upon discharge, I stopped by the outpatient pharmacy in the hospital and the pharmacist told me she had been praying for Presley every day because her name was sent out by her church. I didn't know her or recognize her church. Prayers work miracles.
Listed below are ideas for family and friends of children who find themselves in the hospital. Everyone wants to help, but often the parent is just too overwhelmed to answer calls, texts, or messages, so maybe this can provide some guidance about what we found fun and useful.
Things we received:
Lots of balloons and stuffed animals brightened up the dreary hospital room, especially since we didn't face the outside world directly. It brought big smiles every time the clerk walked in with a surprise. We called her the "gift fairy", but she wasn't as amused by it as we were and told us we were wearing her out. Presley used some of the stuffed animals to cover her port that was placed in her left upper chest. She would sleep with them there to make sure no one touched the area. That cheer was transferred home as it filled our living room. It was a strong visual reminder of the love everyone had for our daughter.
Joy Jars - go to https://negu.org/ to learn about this jars that are jam packed with fun toys, activities, games and hats sorted by age. Read the story how one girl named Jesse wanted to make a difference. Our nurse brought us this, then we signed big sis up too and they sent another after our discharge. These are fun ways to entertain. Ask the staff, I bet they have them!
Rapunzel Wig hat - this was given to us by the child life specialist. They had several princess wigs, but Presley loves Rapunzel.
Barbie doll - with no hair and 2 wigs -talk to the child life specialist and see what they have
Big 18" doll with no hair telling a story of recovering from Cancer. Super sweet gift from a friend.
Hats or super soft head covers in anticipation of hair loss. We got a variety of hats to give her a choice. Some were handmade, some from Amazon and some on Etsy.
Superhero Training book - this is a very special given to us by my new friend Jackie at Rainbow Blankets. It belonged to her son. It turns the hospital into a world of training opportunities. I showed it to our Child Life specialist and she was going to order some. Read here to learn more about it.
Tiny Superheroes cape - one of Presley's Special Olympics swim coaches raised money to get Presley one of these special capes and it went so well that they were able to pay for several other children's capes too.
Draw It Out book by Art With Heart to help kids overcome adversity. I got this from the Child Life Specialist for big sis who loves to draw. It encourages her to express her feelings through drawing. "When ink touches paper, the heart says what the words cannot".
Sibling: "What About Me? When Brothers and Sisters Get Sick" The Child Life Specialist gave us this when I asked what they had for siblings.
Because Someone I Love Has Cancer book by the American Cancer Society - Kids activity book that involves drawing and answering questions
Sparkly house shoes for Presley. They had panda faces and she loved them.
Baby doll with bottle that gave Presley something to feed and play with. It also gave us something to show procedures on if needed.
DVD player with movies - we happened to have an old one at home and it hooked up nicely at the hospital to watch all of our favorites from home. Another mom suggested a Fire stick to have for movies and Netflix.
Handmade masks for entire family - will need many to allow dropping on the floor, losing them, and washing them each time they are worn
Drawing supplies or kit for child and sibling (like a pretty notebook and markers)
Coloring books w/crayons or mess free markers & coloring pad or Water Wow books
Sticker face games - lets you put eyes, ears, etc...on a blank face or animal. Presley loves these. Keeps the hand going with fine motor movements. Here is a search on amazon with dozens of fun ideas.
Colored rubber bracelets that said her name or special color for cancer to let Presley and Payton to give out to family and friends. She was also given stretchy, cloth bracelets with horses on them. She gets a different one each week with an inspirational quote card attached.
Crafts kits -we received a flower crown and fairy lantern one for both girls to do
Lotions and chapstick made with basic natural ingredients to combat the extreme dryness that comes with the medications. Epsom salt to soothe those exhausted little muscles.
Bubbles - fun, but also encourages the child to exercise their lungs while laying around more
IPAD - we didn't use electronics much before this, but knew we needed a way to keep entertained while indoors more. Tricia brought one up immediately and family members got together and purchased a really nice, purple one for them
Board games - age appropriate, something we love to do at home before this happened
T-shirts - we received a christian shirt and one with a chicken on it. This are 2 things dear to Presley, so she loved wearing those in the hospital and telling everyone about them. Plus, it got us out of the hospital gown for awhile.
Port Access shirts - sometimes called "Chemotherapy" or "adaptive clothing", but can be difficult to find. There is one awesome lady named Laura Frank Pursglove, whose grandson has cancer, so she and some friends began converting T-shirts into port accessible shirts by adding snaps. They do this out of generosity at no charge. She has given me permission to put her name on here to contact via Facebook. Find her here.
Cards - sometimes the hospitals have e-cards you can fill out online and they will print off and take to the child. The girls loved getting real cards with stickers in them addressed to each of them after we got home.
Books - Presley loves dolls, fairies, unicorns, and anything girlie. Books are fun and easy for her. She loves reading together, so always a great gift for kids. Look at the Step Into Reading books for younger kids in their favorite topics.
Music box - she was given a small wooden music box that plays "Jesus Loves Me" when you turn the handle. We carry it to each appointment and play with it.
Zoom call with a Princess - we had a kind friend who had beat Cancer herself purchase this for the girls after we got home. They chose Rapunzel and the girls absolutely loved it. She read a book, sang to them, then just talked and laughed with them. A very unique gift to give a child while staying home.
Blankets - so many beautiful, fun, creative, and handmade blankets! I don't think you can have too many. We used them in the bed, in the chairs, on the floor, in the bean bags, in the chair, in the clinic. I loved how people used their talents of sewing and quilting to bring joy to my daughters. Many times, they were given to both of my daughters, which made Payton feel special too.
Kensi's Rainbow Blankets -Please buy someone you love one of these adorable blankets. A sweet little girl named Kensi sells these blankets to raise money for pediatric cancer research in honor of her little brother who had brain cancer. A dear friend gifted us one and introduced us to the mom of this sweet girl. A beautiful example of kindness.
Pictures from her friends:
* Her instructor where she takes horse riding lessons, "Mr Ron", made a sign for Presley and put it on her favorite horse. He also sent many videos while he walked around the stables and named all the horses, chickens, and dogs she was used to seeing. She loved seeing this.
* Her taekwondo instructors sent her and big sis a package of all things taekwondo that included hats, wristbands, pink belt hairbands, and more. There was also a big poster that defined what courage was.
* Big sis Payton made a video when she fed the animals and made sure to include her favorite pet chicken "Rainbow" everyday while we were in the hospital. Now at home, she brings it to the window each morning to say hello.
* Presley's previous cheer team made a video of all the kids and instructors wearing her favorite color purple and saying words of inspiration, then ,set it to music. It was beautiful.
* Handmade cards from their best friend and pen pals that kept coming even after we made it home were priceless and they were excited for mail each day.
Child Life Specialist or Social Worker - they brought toys and games by each day to use. They also offered books for big sister when we got home to help her understand and talk about what was going on and how things were going to change for awhile. They also sent for music therapy, and a therapist came by with a cart full of instruments and they played songs together. It was Presley's favorite thing in the hospital, so ask for it. There are also many resources to assist financially. Lean on these specialists, they will find a way to make your child feel more comfortable about what is going on.
Things I ordered in anticipation of going home or soon after we got home:
Waterproof pads ("Chux") - it was very painful to move for awhile, so having these under her saved us from moving her excessively when an accident occurred, and it will from all the IV fluids they are receiving to stay hydrated and keep the body flushed out.
Waterproof reusable pads that are soft and washable. Can go on the couch, beanbag, or bed if needed. I also bought the larger ones.
Extra set of sheets for her bed to keep washed and ready
Goodnite Diapers - accidents are going to happen at night
Castor oil pack - to help with constipaton, detox, lymph stimulation
Silcone straws - needs to be flexible as you offer fluids often at home while she was lying down. I cut some of them shorter to fit in the medicine cups too.
Passive range of motion small pedal exerciser: I ordered this to get those little legs moving again once she felt better. It is motorized and can start very slow and gradually increase. It has a 15 minute timer. It can be used for legs or arms. For $139, I thought it was great. Initially, I had to hold her legs straight so they didn't fall to the side due to the muscle wasting she experienced so quickly. Within 2 weeks, she could do this by herself. I sit beside her still and do not recommend leaving them unattended. Bonus, there is also a cool study about DS and the benefits of assisted cycling therapy here.
Walker/wheelchair - a friend let us borrow a 4 point walker with a seat and brakes while waiting for the large stroller type wheelchair to come in. This had a seat that stored her books and anything we might need to keep near by. Presley called it her "carriage". It is very common for children to stop walking the first month during induction due to the Vincristine causing issues with reflexes, neuropathy, and muscle loss. I suggest ordering the stroller/wheelchair early, even though they may still be walking fine, the fatigue will be there for awhile and it took a few weeks for the stroller to come in. This gives me a way to get Presley outside on nice days and move from room to room more easily. (Disclaimer: the walker we used had a sticker stating not to use it for transportation, supposed to be used as a chair for resting only) This is a picture of the one we ordered through insurance:
Therapeutic massager/vibration - I already owned this one, and it has been invaluable. I use it on Presley's feet and legs each morning for the neuropathy, then on her abdomen to fight the constipation caused by the meds and inactivity, to encourage lymphatic draining that is typically stimulated by daily movement, and to her back and chest to help prevent fluid from building up while lying down so much.
Inflatble mattress - we already had one. Presley wasn't comfortable sitting upright on the couch after so many spinal taps and was basically too weak to remain upright long. She would ask to lay down. We put an inflatable mattress in the living room to keep her moving around the house and engaged with us instead of just laying in her bed room.
Soft, cushioned toilet seat - sounds crazy, but one of the major side effects of Vincristine is constipation. We spent a lot of time trying to overcome this. Presley's legs were too weak to even hold her legs on a small stool or the squatty potty stool, so I took extra bathroom rugs and towels and made them tall enough for her feet to rest on, but they would discolor from the position on the seat, so this cushioned seat was extremely helpful. Costs $20 at Lowe's.
Fruit & Veggie Wash - they warn you about unwanted germs when consuming anything fresh because the immune system will stay so suppressed. Tricia again for the win, she brought me some Young Living Thieves Fruit & Veg wash. We didn't want to stop eating fresh, so this helped out. It also helps out to soak the fruits/vegs before juicing them.
Soft tooth brush - you can google "chemo toothbrush" and find a variety. When you child's platelets are very low, you will see easy bruising and possibly bleeding when you brush their teeth, so a soft toothbrush is recommended. Also later, a side effect called mucositis can occur which causes sores in the mouth so buy multiple and you can change out often. Another mom said she uses baby toothbrushes because they were so gentle.
Large Bean Bags - again, to keep Presley from just staying still in bed. The bean bag allowed her to recline between a sitting and supine position but completely supported. It could also easily be moved to different rooms.
Did you know you can save your child's own hair to make a WIG out of it???? I wish we had know this because Presley had the most beautiful long blond hair, she called it her "Rapunzel hair". Look at this non profit called Crowns of Courage. You can also just apply for one of the halo wigs too. Looks like a great place to donate hair as well, but check the website to see if they are accepting at this time.
Things for Mom, Dad, parents, grandparents, or caregiver:
Extra pajamas for days you just don't get dressed, and houseshoes while at the hospital (thanks Sis)
Chamomile w/lavender or other teas for stress, coffee if they are coffee drinkers
Essential oils with device to wear (bracelet, necklace) - I found them calming for me
Journal - I received a blank journal and began writing favorite bible verses in it that encouraged me. When "having a moment", I can just read some of my hand picked inspiring verses to be feel nourished again. I call it "My book of God hugs to give me peace, nourish my soul, and bring me joy".
Books or magazines - I had several friends send me books that would entertain, support my curiosity about this new diagnosis, and provide spiritual guidance in this new journey.
Binder - Someone new comes in every hour and gives you a business card or they hand you a stack of information about the 5 new medications they will be giving that day. This gave me a place to organize everything and write down my questions.
Paper plates, cups, utensils - the last thing I wanted to do when I went home was to wash dishes. Yep, Tricia hooked me up again! This was such a great idea and help to us without having to worry about washing dishes.
Comforts of home while in a hospital room:
Water filter pitcher - the tap water out of the ice machine tastes bad, so this will help out
Tape- cover lights to hide unnecessary light from the hallway or machine or hold curtains
EMF blanket - baby blanket size to cover your child for about $69 on Amazon to ease my mind, pair up with your child's favorite pillow case to dress up the room
Sound machine - to help protect your child's sleep and hide all the talking from the hall in the middle of the night. I chose Wholetones.
Diffusers - for many reasons, but also to make it not smell like a hospital room
Tea tree wipes - I make these homemade, so I can clean the surfaces when I want to
Flashlight - to do late night reading, go to the bathroom, or keep someone from turning on a bright light during the night
Others things family or friends can do:
Gift card for dinner, another friend gave a card for a meal delivery service that we used while in the hospital still
Frozen dinners dropped off - check about dietary restrictions
Amazon wish list - have mom create a "wish list" under their Amazon account, then wish list, give it a name, then it "public". Let the child pick out some new games, toys, books and let family and friends pick things off of this list. Tricia was creative and did this and had the items sent to her house. When we were discharged, she bought the bag of goodies and backpacks over to ration out each week when we had to return for chemotherapy. Each bag also came with an inspirational christian card to read. My girls looked forward to each Monday, because they got a new surprise. This made chemo days start with a smile for them. It could also be used for supplies the parents are going to need when they get home to help financially offset some of their out of pocket expenses.
Click list - at our local Kroger and Wal Mart, they offer a click list where I can order everything I typically get and pay for it in advance. Then any one can go by and they will bring it to their car for them. A family member picked up our groceries, which helped us out immensely to not have to worry about this.
Some great ideas from caregivers with more experience on this journey suggested these:
Glass markers to color the windows
Melissa & Doug reusable stickers - we have lots of these too
Fun pillowcases - I love this idea
Printed photos of family and friends
Shipt membership to get groceries or Target delivered
Fake greenery/succulents to brighten up the room
Toddler training potty to place on bed instead of dragging IV to bathroom for smaller kids
Extension cords for extra electronics
Extra thermometer - or 2 or 3, for home, hospital, purse
Headphones for phone or watch "grown up" shows
Wall decals - I love this idea to brighten up the room!
Extra pairs of fancy children's underpants
Things to consider later:
Roc Solid Foundation - this is a foundation that offers ready bags for hospital trips and backyard playsets for free!! Go check out this out. It could take a couple of months, but what a great way to kids moving and outside playing.
Make a Wish foundation - in the past, they have given special trips, but currently their website states they are on hold for trips, but granting wishes like bedroom makeover, playsets, animal or pets, meeting a celebrity, gaming center, computer and more.
Gigi's Playhouse - this resource is more specific for Down syndrome and offers lots of class for all ages online, both live and prerecorded to help entertain your child and have fun.
As I mentioned before, we were very blessed to have family, friends, and a community supporting our new journey. I hope these ideas help others when they so dearly want to do .....something....anything to help out.
Blessings to you all,
Robin
