When our sweet, 10-month-old Hayes was diagnosed with Choroid Plexus Carcinoma in January of 2016, our world completely shattered. Unbearable, extended hospital stays that separated our family made it difficult to maintain any sense of normality! The side effects of chemo and the constant anxiety of possible unexpected hospital admissions meant worry and sleep deprivation for the entire family. And through it all there was an underlying and unspoken worry that we might lose our son, our baby.
To say this was a hard time in our lives is an understatement. But what got us through was the incredible outpouring of support and love from our friends and family. It helped ease the painful blow that was our journey through childhood cancer.
I often get asked by people what they should do to help families with a newly diagnosed child with cancer. On the HayesTough blog I recently shared 10 ways to help an entire warrior family. Here is the link to read more on that, but for today’s Friday Faves, in honor of Brain Tumor Awareness Month, I am sharing some of the necessities for the child going through treatment. I unfortunately know what a difference they make. Each of the things I am sharing were amazing for Hayes’ quality of life and if you happen to have the heart breaking experience of having a child close to you diagnosed, these will hopefully bring them comfort as well. So to start the list off, Hayes’ aromatherapy stuffed puppy was a life changer! It is one of those things that truly brought him comfort. It is weighted, can be heated, frozen and the smell relaxed him when he was stressed.
An interesting thing that happens when you walk into a hospital is this immediate hit of the chemical smell. I hated it so much. It depressed me to smell something so stale. I know it can be worse, but it was hard for both of Hayes and me. So I began bringing in aromatherapy wall plug ins. I had one of those plug in wax warmers and I would drop about 10 drops of my favorite essential oil and then fill it with water and turn on the light. Without question, Hayes’ room always smelled like home.
Another little known fact about childhood cancer warriors, if they have what is called a port, you have to “access” it every time you need to draw blood or administer medication. This entails sticking a large thick needle through the skin to the tube that lies just beneath the skin. It gave me anxiety, so I can only imagine how it is for these sweet kids. I also sometimes had to give Hayes shots at home. These two favorites were so helpful for all of these scary polks. I even was able to give Hayes a few shots while he slept without him waking up screaming. Made such a difference.
The next thing is this lullaby night light elephant. While he was sleeping, the comfort of having that sweet music next to him in bed brought Hayes some normalcy and consistency each night and nap time.
The last thing is one of those tragic mecessities I wish I didn’t know about. From the outside this may seem extremely simple, but I could hardly supply enough in my house. Poor Hayes would vomit all over the bed in the middle of the night and all I can say is thank goodness for Chux! I would lay one of these down in his crib and if he threw up on it in the middle of his sleep I could slide it out from under him, throw it away and slip another one underneath him. All without having to wake him much. These were SO helpful! They have also become my go to for my other kids when they have the stomach bug.
*Many of these things I include in our comfort kits that we supply to cancer warriors on our website. Go there to donate a comfort kit to a child in need!