74 Unknowns in the future affect each of us differently; how I survived my son's chemotherapy.
04-06-2018 The craziest thing about the type of brain tumors Ben has, is they often do not respond to chemo, or the chemo stops the growth only to have it continue again shortly after treatment. Many kids end up doing many years on different chemo protocols just to keep tumors in check. (We are told to view this as a chronic illness he will always battle). I try not to think about this too much hoping that Ben is blessed that the chemo he is on now will work and have lasting effects for him. It is great to hear new drugs are being developed to try and heal children with brain tumors another way. It is amazing what scientists are discovering and I feel so blessed to be alive now with doctors who know how to help Ben, and so much hope for even better medical alternatives in the future.
In my worry I try to focus only on promising research, or stories with a “happily ever after”… but the truth is life has an entire range of emotions. I know that all the big scary events of the past, uncomfortable moments today, and unknowns in the future affect each of us differently. So, I make a special effort to take time to ask Ben “what was that like?” “How did that feel?” “Tell me more about that…” In allowing him to process through his own experiences and feelings. I let him know I am here to talk. He knows I cannot fix these medical issues, but I can be a loving witness to his journey.
When he doesn’t want to talk that is fine also, he knows when he is ready, I will be here.
• What can you do to validate the experience of others in your life?
• How can you let them know you are able to listen to their story?
• How can you listen without immediately offering solutions?
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