61 Helping kids come to terms with a difficult diagnosis How I survived my son's brain surgery rehab
During the day Ben never wanted to talk about anything medical or about the future at all. Right before he fell asleep, he would start to ask me questions. Hard questions. He was in pain recovering from brain surgery and knew there were other brain tumors that may need to be removed and had been told a spine surgery would be necessary in the future – so right as he was about to fall asleep, he would start to worry about these upcoming surgeries and ask so many questions about them.
He had gone blind on one eye and knew that he had a tumor threatening the vision on the other side so he would start to feel a pain in that eye and start to ask me questions about that tumor and going blind. My gut wanted to just tell him that everything would be fine, but he recognized that as empty promises, so I was absolutely honest in all of my answers – wishing that I had better answers to give.
He knew in a few weeks he would start chemotherapy so he had so many questions about what that would be like. He wanted to ask me a thousand things, but the answers were not what he wanted to hear. This was very late at night, and we were both exhausted and worried. I found the Imaginary Friend’s Society movies (made by the Pediatric Brain Tumor Foundation) to be an amazing tool at this time. Ben would lay on my lap on the sofa, and I would hold the iPad where we could both see and then he would choose a movie. (like “what is cancer?”, “Why am I tired all of the time?”, “Surgery”, Chemotherapy”…”) He would start it and then when the movie gave information, he did not want to hear he would turn it off and yell at the movie. After a few minutes he would watch the same movie again doing the same thing. Over and over, he would listen to this fact and argue with it, until he could hear it and just quietly say “that’s not true” without turning off the movie and watch until it came to the next unpleasant fact, and he would go through the same process. He would argue with the same movie until finally he could watch the whole thing without having to stop it, but just saying no at the parts that were not the news he wanted. We would cry together as he came to accept what was happening. I do not know if other kids do this, but the movies were so helpful because he was not arguing with me, I was with him supporting him as he argued with the movies. He could say whatever he wanted to the movies. He could yell or cry and that was all perfectly fine. These movies were invaluable at this time helping him process what was going on and understand what was coming in the future.
Here is a link to the Imaginary friends society videos that helped us so much.
• Welcome to the Imaginary Friend Society
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
56 “best day ever”? Feelings of gratitude can be so uplifting.
57 It is so easy to take family for granted.
58 A nice hot bubble bath can be soothing.
59 IT IS OK TO NOT BE OK.
60 Imagine your very favorite place in the world.
61 Helping kids come to terms with a difficult diagnosis.
62 Checklist to get yourself back on track with self-care.
63 Go for a short walk
64 Yoga can be relaxing and soothing.
65 Making your first thought a positive one.
66 Congratulate yourself for doing difficult things.
67 Pop bubble wrap.
68 DANCE to peppy positive song.
69 Plan a fun activity for yourself
F. CHEMO 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 #Mekinist
#watchandwait #trametinib #copingskills
#Carboplatin #Vincrystine #ChildhoodCancer
#nevergiveup #thereishope #PediatricBrainCancer