70 Chemo I was terrified and it went wonderfully. How I survived my son's first day of Chemotherapy
When I think back to the time my son was on chemo I remember it very differently than how it felt as we were going through it. For the rest of my story, I am going to share my old Facebook posts.
2-05-2018 Honestly, I was a bit terrified about today. The terror has been growing since Ben came out of brain surgery and we could focus on his treatment plan. He has gone blind in the left eye so we knew he needed chemo to battle the tumor growing on his right optic nerve threatening his sight (& I can't even really think of the tumor growing in his brain stem) - knowing he needs it did not comfort me. I worried about how he would handle it and how his life would be impacted. Today was day one and I have to say we have all been extremely blessed. Ben recovered well from the placement of his port and is not that bothered by having it in. They gave him his favorite food after surgery, and he ate with no problem. He handled the treatment well and they have given him such wonderful nausea medicine he has not been sick. I know Ben is strong and we would have handled today however it turned out, but I cannot tell you how relieved I am at how wonderfully it has gone.
Thank you all so much for the prayers and positive thoughts. I feel so blessed today.
What can you do while stuck in the hospital for hours?
I found activities that took concentration in short bursts were the best distraction for me. I couldn’t really read a book when I had to look up every few seconds, but other activities that could be frequently interrupted were great distractions.
Crossword Puzzles, Suduko, Brain Teasers, Riddles, Joke Books, (Ben enjoyed telling and hearing silly little jokes), Adult coloring books, Drawing with a spirograph (one of the BEST poke prizes EVER), Knitting and/or crocheting (I did not do this, but when my mom came to the hospital with us, she found this very soothing)
Also, each treatment Ben got to pick a “poke prize” and we had fun playing with all sorts of toys during treatment. Some of his favorites were normal putty, puddy (that makes fart sounds), slime, kinesthetic sand, playdoh, and Legos. There were all sorts of activity books and other toys that were fun for a while, but the squishy things – and creative type toys that you could build with seemed like they were the most fun for the longest amount of time.
This is just one of a hundred tools that helped me including:
A: BEFORE DIAGNOSIS
B: Diagnosis and PRE-SURGERY HOSPITAL STAY
C: SURGERY D: RECOVERY in patient
E: At home recovery F. CHEMO
70 I was terrified, and it went wonderfully …
71 life was unfair- understanding & compassion for another
72 EVERYONE HATES CHEMO -
73 Do not despair.
74 Unknowns in the future affect each of us differently.
75 The little surprise blessings make everything manageable.
76 Life is fragile. Create a special moment with a loved one.
77 We cannot be perfect; don’t push yourself past your limits.
78 Excitement about physical activity.
79 Motherhood: HARD uncomfortable and overwhelming.
80 What group could you join for support?
81 Wishes are magical things.
82 Refusing to acknowledge fear only creates more pain.
83 Remembering your best journey can be a nice distraction.
84 What dreams do you have for yourself?
85 hard to watch a little heart break.
86 Feelings can bring our needs to our attention.
87 Anticipating an upcoming trip can give us joy.
88 VIP treatment sure feels good, thank you Make-a-Wish.
89 Worry - listen to your fear and take steps to protect yourself.
90 The resilience of kids is just amazing.
91 Devote time to things that really matter to you.
92 We MAKE time for the things that are truly priorities.
93 Don’t let worry for the future rob TODAY of nice moments.
94 We have help and people on the sidelines cheering us on.
95 The good we throw out in the world always comes back to us.
96 A mom who cares and does her best (not perfection).
G. FAILING CHEMO H. WATCH AND WAIT
I. NEEDING NEW TREATMENT
J. END OF NEW TREATMENT / watch and wait
** Living life one day at a time.
Topics I have thought and talked a lot about over the last few years include:
#momguilt #PediatricBrainTumor #Neurofibramatosis
#Glioma #Astrocytoma #PilocyticAstrocytoma
#BrainTumor #OpticNerveGlioma #PediatricBrainSurgery
#NF1 #ParentingChronicIllness #watchandwait
#copingskills #ChildhoodCancer
#Carboplatin #Vincrystine
#nevergiveup #thereishope #PediatricBrainCancer