Monday, June 14, 2021

New Cancer diagnosis

Some resources after you or a family member receive a cancer diagnosis.    Educate yourself.  Ask lots of questions.  Discuss everything with your doctor.  Implement what you feel is right.  Trust your instinct.   Above all support your body with hydration, rest, nutrition, detox, and regular bowel movements.  Nothing on this page should go against what your doctors are trying to achieve, instead it should complement and support your journey.

If your child has been diagnosed with cancer, please read this post first: New diagnosis leukemia: how family and friends can help
 
 
 
 
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For my friend Serena, fellow warrior mom, who visits and supports so many families at Arkansas Children's Hospital after spending a lengthy amount of time there with her daughter.   She is the first to make sure parents know some of the basics helpful websites such as these
 
 Kick cancer movement - register for the free kit of natural products to support your child through this journey.  You will pay for shipping of $9.95.  One of the many products is worth more than that. 

NEGU (Never Ever Give Up)  - sign up for Joy Jars to be sent monthly and typically some extra surprises throughout the year for your child and siblings.  It has fun little toys that bring smiles to children every time they get one in the mail.  The hospital should have the first jar there for you. 

Strong Little Souls - will send care packages to child and siblings



Hopecam - supplies children with a tablet, chromebook, or IPAD for free. 

Healios - you will receive a container of Healios for the cost of shipping only at $14.99  for a child with a cancer diagnosis.  This is extremely helpful for mouth/gastrointestinal ulcers that commonly occur with chemotherapy.   I recommend getting this and having it before you need it.  Our doctors support using in, please discuss with your doctor. 


Sara's Smiles  - provides art supplies to allow the children to express themselves.  You can also ask your social worker for them. Request a kit to be sent.

Lost Cabins of Petit Jean in Arkansas  The owner Mark hosts a free weekend retreat just for families dealing with childhood cancer.  He does this once a year and provides some of the meals.   You have to call and be placed on his list.  It was a wonderful experience to get together with other families while staying in the beautiful cabins. 

Make A Wish  - a wonderful organization that provides a child's wish.  For us, they gave my daughter a camper so we could travel and remain isolated since our treatment was over 2 years.  You should contact them early since sometimes it takes awhile to get to you.  

Roc Solid Foundation - incredible organization that will provide you with a "ready bag" if your hospital does not have one.  These bags contain everything you need for a quick hospital stay or long days at the clinic that includes a tablet, charging cords, blankets, and more. .   They also will send your child (under 10 years old) a free playground playset.  See website for details and contact them as soon as possible to get these items. 
 
 Princess Nora's Warriors - request information, prayers, or assistance. Out of Hot Springs, AR.

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The rest of this blog is my personal opinion of websites and books that I found helpful.


Books to read: (amazon or abebooks.com)

               Metabolic Approach to Cancer - recommended to me by a Dr, I found it very interesting.  Helps you analyze your terrain and where improvements could be made.   A great book to start with.  Author Dr Nasha Winters has numerous youtube videos discussing.

                Keto for Cancer - we had genetic testing done (Nutritional Genome -see below), which determined keto was not an option for us, but many have recommended it for cancer.   We chose to support with extreme nutrition as much as possible.

                Chris Beat Cancer - good nutritional advice in this book for the entire family.   He beat cancer in his 20's and dedicates his time to educating others.  Easy to follow and implement.  Focuses on high antioxidant anti-inflammatory nutrition.

                Max Lucado's workbook Experiencing the Heart of Jesus.  This was sent by a sweet friend who knew what I needed before I did.  Find an outlet that nourishes your soul and focuses on the positive.  I was given a small notebook to write down my blessings each day, instead I used it write bible verses about healing, faith, miracles, or encouraging words that helped me.

                 Naturpathic Oncology -  this book was recommended to me.  If you give supplements, you can check to see if they are helpful or harmful for the current treatment they are receiving AND always discuss with your doctor.  You can also look up recommended supplements for various cancer diagnoses.

 

Websites:

The Stern Method - a family whose son had cancer.   They cleaned up their entire home and lifestyle.  Tons of information about naturally supporting someone who has cancer.  They have a resource page that lists by brand what has worked for them.   He is preparing a course to walk anyone through a cancer diagnosis.  I really like this website and family.

Season Johnson - a mom whose son had ALL/leukemia and thrived through the 3 years of treatment using diet, lifestyle changes, and essential oils. Her website and FB are a wealth of information.   She is also a nutrition/health coach. If interested in essential oils, she shares what oils she used for her son's immune system, nausea, detox, and more.  They will also answer questions within hours if you ask. She also founded a website called KickcancER which also sends a free starter kit to families whose child has been diagnosed with cancer.  Here is her recipe for essential oil blends specifically related to cancer.

Thrive through Cancer podcast - also by Season Johnson

Zuzas Way Integrative Care - warrior mom also that is also a medical provider/integrative oncologist , she shares what she has learned.  Also has a FB page.   Promotes keto diet, nutrition, and supplements to support the body.   She was instrumental in advising us what supplements to use to support our daughter during each phase of treatment and to help with side effects of all the meds.

Dr Nasha - author of Metabolic Approach to Cancer, shares good information to assess your terrain.  Also promotes keto type diet. Also on website www.ketokind.com to sell premade organic shake pouches.

The Truth About Cancer -  Most detailed information addressing everything cancer.  There is a book with the same name.

Chris Beat Cancer - website and book,  a lot of good nutritional advice from a cancer survivor with this anti-inflammatory diet.   He hosts a free Square One program for free once a year, but you can buy the program anytime.  I bought the DVD set new on ebay for $20.  If you are local to Little Rock, you are welcome to borrow mine.  Extremely helpful information about what nutrition can do to help someone through a cancer journey.  Chris also wrote a book with daily inspirations to encourage and educate you one day at a time called Beat Cancer Daily.  I really enjoyed it.   Also a cookbook with cancer fighter recipes called Beat Cancer Kitchen

Nutrition Facts - Dr Michael Gregor has nutrition information on numerous health topics, not specific to cancer, but founder of the "daily dozen" to health promote family wellness.   Use the search option to find topics related to you.  He also has a book called How Not to Die, which breaks down different cancers and diseases and what scientific data supports the best nutrition for it.

Wellness Mama - good advice about cleaning up diet and home as well as wholesome easy recipes from a regular mom like us.  Not specifically cancer centered, but a good start to detox your home. 

Max Love Connect - a website, FB page, and app that connects you with like minded cancer parents/patients who want to live a healthier life.  You can ask questions or just read and learn.   Great information on nutrition.

Eat To Beat Cancer - MD website about healing with nutrition.   Lots of recipes.  Also has a book by same name with great information.

Believe Big - good website with information about various cancer therapies and  they will help you find an integrative practitioner if you want.  Integrative practitioners can guide you through chemotherapy with various supplements and therapies to support the body.  They work with the conventional therapies/chemo and ensure you do not give something that would counteract the medications you are receiving.  

Believe Big Radio is a weekly podcast developed to help you find answers about integrative cancer treatments and prevention. In each episode, we will take a deep dive into your healing with health experts, integrative practitioners, biblical faith leaders and cancer thrivers from around the globe.




THINGS YOU CAN DO:

*  Be prepared.   Stock up on food, juicing materials, supplements, etc... before your treatments start.  Think  like you will be exhausted and what will help you the most.  Find somewhere that delivers to you.  Thrive Market delivers nationwide.  We are fortunate to have Whole Foods close enough to deliver.  Try these out before treatment begins.   Can you order Kroger online and have family pick it up curbside for you?  Think detox, hydrate, regular bowel movements, nutrition, and rest as your top priorities.  Keep moving, even if it is a gentle walk as your energy allows.  I bought a small automatic pedal bike for my daughter.  I strapped her feet in and it passively moved her legs as if she were riding a bike just to keep her active.  She was willing, but Vincristine made her legs uncooperative and weak and unable to walk.

* Consider learning to juice.   Make ahead and freeze or designate someone to help with this.   Here is my favorite recipe:  Season Johnson's green juice .  Chris Wark has a good post explaining how and why here.  If you can't juice or don't have the time or energy, then consider a low sugar juice like the Farmer's Juice which is keto friendly and packed with organic dense nutrition.  Your goal is to get as many nutrients in each day as you can. Best juicer is the one you will actually use.  My personal favorite is the Nama Juicer because you can put everything in the top container and walk away.  It is expensive, but typically family members are wanting to help and this would certainly help you get condensed nutrition in your child in a shorter amount of time. Be sure to clean your fruits/vegetables very well since the immune system is compromised on chemotherapy. (Discuss with nutritionist/doctor)

*  Smoothies - my family drinks one each day.   Container 1 has flax seeds, sunflower seeds, sesame seeds, apricot seeds, and pumpkin seeds ground into a fine powder using a coffee grinder and all mixed together. Container 2 has spirulena, matcha, cranberry powder, acai, beet powder, and a mushroom mixture all ground together and in one container.  I buy theses plastic cups with lids and straws so they can be made ahead and placed in the freezer for a week at a time.  I put one tablespoon from each container into each cup then add an approximate 1/4 cup of each: avocado, raspberries, blueberries, dark cherries, and mango.  You can also add cilantro or broccoli sprouts to increase the nutrition.  Just add coconut water or almond milk in the morning and spin them up.   Easy to make ahead.  

 






* B complex supplement - most people need a good B-complex, but discuss with your doctor.  It needs to be stopped around chemotherapy days using methotrexate.   According to the book Naturpathic Oncology, several other chemotherapy drugs do not go well with B12, so be sure to check.

*  Check Vitamin D levels.  Low levels associated with many diseases, including cancer.   Find out now if you need to begin supplementing.   Optimal levels 60 or above.

* Nutritional genome - a genetic testing company that offers important and fascinating information.   This is how we found out a keto type diet was not right for us  Cost was $299, but worth it.   It told me that my daughter was not a good responder to the ketogenic diet.   It provides: 

  • Personalized grocery list
  • Recommended blood work
  • Toxins / foods to avoid
  • Genetic strengths & weaknesses recap
  • 100 clinically relevant genes (151 SNPs) for a whole body approach to wellness
  • 8 targeted reports profiling Digestion, Energy, Hormones, Stress & Cognitive Performance, Inflammation & Longevity, DNA Repair, Detoxification, and Athletic Performance

 * Plan ahead for hospital stays.  For us, that meant a "go bag" packed with her favorite pillowcase, pajamas, books, toys, filtered water pitcher, EMF blocking blanket, blue blocker glasses so as not to interfere with natural melatonin build up each night, sound machine/Wholetones, flashlight for me so I don't wake her up when I stay up and I used as soon as the nurse walked in so she didn't turn on any lights, tape to cover machine lights or to hold curtains to cover hall windows, condensed food packets/healthy snacks like these that provide healthy fats/proteins:  Super Fat keto pouches , made ahead frozen juiced vegetables/fruit, fresh fruits and vegetables. 

*  Consider CBD oil - I wasn't a fan until my daughter was diagnosed with cancer and had so much pain.   Do your research,,talk to your doctor, and see if it is an option for you.   

* Haelen - a fermented drink.   Call Jordan and ask how it might help you.  It is not cheap, but we were told no probiotics while "counts" were low, but fermented items were ok. This product has an impressive history. Discount for military.

* Healios - a product to have at home before you need it.  It helps with oral mucositis (chemo mouth ulcers).  Developed by an oncologist.  If it is a child who has the cancer, they will give you the first bottle for shipping costs only.   Also buy chemo soft toothbrushes.  You can also rinse with baking soda and water.  Gastrazyme is made from raw cabbage and was recommended for us and helped tremendously.

* Bone broth - full of healing nutrients, especially for the gut.  Make your own or buy these packets to add to warm water and drink each day.  They also make a bone broth protein powder you could make a smoothie with.   I cook noodles in broth and add the powder to almost everything to make every bite count.

* Detox - epsom salt baths, infared sauna, BioMat, sweating, movement/rebounding, hydration

* A friend recommended Transfer Factor Plus to support the immune system.  My entire family takes transfer factors.    


Good articles:

Dr Jockers Top Cancer Stem Cell Killing Nutrients - a must read

Glutathione is extremely important and gets depleted quickly.  Read this to learn more.

Stimulating the lymphatic system is a must, read why and how here.  


These are just a few things to get you thinking and prepared.  Everything may not be right for you, but you need to know there are options. We don't do all of it, but we do the best we can and what is appropriate for us.  Once you go down the rabbit hole, you will find much more.   This was put together quickly to help a friend out.  I will edit and add to it at a later date.  

Remember Proverbs 23:7 "As a man thinks, so he is".  Keep your thoughts positive.  Pray and stay encouraged.  


Blessings,

Robin



Disclaimer:  This is informational only and is not a substitute for medical advice.  Discuss with your doctor any interventions you are considering.  You can also ask to discuss supplements with the oncology pharmacist, like we did, to ensure the supplements did not interfere with the chemotherapy.

 

Monday, March 1, 2021

How friends & family can help when you find yourself at the hospital with a child


 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!

 

Beads of Courage - the nurse gave Presley a bead for every accomplishment she made.  One for surgery for her port, another for first chemo and a chart to explain it.  We took it home to put together on a necklace with big sis.   The nurse said one teenager wore it on her graduation day.  Ask the staff about it or check out their website.

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.

 May be an image of horse

    *  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.

Pado pure wave CM7 - Massage Customs | Best Therapists in ...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