76 Remember life is fragile. Create a special moment with a loved one. How I survived my son's chemo
4-24-2018 from Bob: We are now 3 months post op, and Ben just had his first follow up MRI. We hope and pray for good news.
This has been a long, and very emotional 3 months. I have felt pieces of my soul torn as I’ve watched Ben pass through this, and it has definitely been a trial of my faith. My biggest fear had always been that I would lose one of my children. This has definitely been a scary road, and I am grateful that Ben has survived, and is doing as well as he is today. Perhaps what has been the most difficult is knowing that Ben’s illness is so similar to how my father passed away 35 years ago. It’s amazing how fragile life can be. I’ve learned how important it is to treasure moments with your loved ones.
Today, Ben and I took a post MRI nap, and then spent awhile playing silly video games and wrestling around. I am so happy to have him, Anastasia, and my other children in my life. Today, as Ben was laughing while playing the game with me, and as I was wrestling around with him, I feel blessed to have these moments where I can hear his adorable laugh.
Tonight, we’ll go back to our room for some more quality time, and I’ll continue my fervent prayers that everything will be ok.
I am grateful for the amazing staff at OHSU, and for the Ronald McDonald House. What an amazing program. They take such good care of the families who have loved ones being treated at OHSU.
What can you do today to treasure a moment with one of your loved ones?
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