Good Vibes Only is what I would like and what I need but they seem to be evading me. Last week Pippa noticeably declined. Not in a big way, but there were slight, subtle changes that I knew were signs. First she woke up one night when her hearing changed again. She was terrified and scared; the empty, hollow sound of vacant space within her ear nerves. Nightmares began. They were always the same and she clung to me with force. Next her breathing became worse which we managed (and when I say we, I refer to the constant medical support I have) with symptomatic medication. The medication is also helping with her anxiousness and her nightmares. I am open and honest with her but there are things she can’t mention or talk about and even though I am with her every minute of every day she is scared. She has every reason to be scared – she’s a ten year old little girl facing a demon that even adults shouldn’t have to face.
Her breathing now is ok and, for the time being, under control but her balance, walking and speech have all deteriorated to some degree and now these symptoms seem to change hourly. At the same time though her facial palsy, smile and eyes are better; having improved somewhat. For a while I have been treating both eyes for not closing or blinking properly, now it is back to only being her left eye that is affected and only slightly. Currently I no longer have to thicken her fluids but for how long I’m not sure.
It is a confusing and hour by hour day that we live. For a while Pippa was best in the mornings; refreshed and rejuvenated from sleep. Now that her symptoms are changing so do our days – all the time. At times she is now better in the afternoons because she is managing and adapting to her weaknesses across the day. Other days she is worse in the afternoon because she is tired. She can also be worse in the mornings if the pressure on her brain is greater after lying down. Three days ago she could barely walk the first part of the day yet in the afternoon she decided that she would walk not “roll” (our reference to having to use the wheelchair) through the supermarket. She held mine and Patrick’s hands and the next thing I knew she’s doing lunges up and down the aisles. Very clearly she said, “What? This has got to be good for my muscles mum!”
Pippa’s determination and “I can do it myself” attitude still shines through. For ten days nowI have been doing twice daily physiotherapy with her. The steroids are now at a low enough level that perhaps we can start to rebuild her muscles. I am doing all that I can. I can help her muscles become stronger, but I can’t help her nerves that control her balance. Physio also helps her mentally to know that although it is a routine, it is beneficial and purposeful. On warm days we go to a friend’s pool where, in private with her brothers at her side, the weightlessness means she can run, walk, swim in the water……….essentially it means she can be free. It’s really hard for an outdoors girl who in summers gone by has lived at the beach and loves the ocean a to not be able to walk on the sand or even consider standing upright in waves on hot days. Pippa, not unlike other children, lived most of her life until now in bathers. With nostalgia in her voice she reminded me on the hot day recently of days she has spent at the beach boogie boarding all day long being able to take relief from the heat in the waves. Now she is unlike other children and she feels it.
I don’t tell Pippa I know what she’s feeling. I don’t. I can’t. Only she knows. Instead, I tell her I understand.
We still try and do something fun every day. But fun is becoming more and more limited due to her speech and walking. The past two days it was a trip to the movies. The three flights of stairs we had to climb to Cinema One on both days (of course!) was ridiculous, tricky and tiring. In this day and age I found myself wondering why and how there is no elevator? Today it will be a visit from beautiful friends driving a long distance to see us for lunch. They will bring with them hugs and love for all of us. Afterwards a swim in the hot afternoon. Then maybe more movies later in the week – perhaps downstairs may be helpful. At some point Pippa has a shopping list for school she needs to fill. We will roll, I know, but it’s good to look forward to and plan for normal life when the life surrounding us is so abnormal.
Last year on the first day of radiation, the first day of chemotherapy and the first day Pippa had to knowingly have a blood test I wore a t-shirt I had been given. It had a picture of the Eiffel Tower on it and it said Follow your Heart. Pippa is my heart. This year in Paris I bought another t-shirt. This one has a photo of the Eiffel Tower taken from the exact spot we picnicked. It says Good Vibes Only. You don’t always need a plan. Sometimes you just need to breathe, trust, let go and see what happens.
I have no more plans. I have trusted everyone that has helped us on this journey. Sometimes I can’t breathe. I’m not ready to let go. I don’t want to see what happens. My wish for 2015 is simple but elusive. I would like to have Good Vibes Only.
Pippa Rea 
Beautifully written Virginia. ESPing good vibes and lots of love from the Mottram family xxx
Sending all our good vibes and love. xxx
Sending lots of good vibes your way today and every other day! Enjoy your lunch x
I wish I could be one of those people who say they know what you are going through when they don’t really, but my 10 yr old son has DIPG as well!
My son lost the use of his left side after he came off the steroids after radiation.
My heart goes out to you and your family and from one mother to another that wakes up everyday knowing we have no choice but to cherish every moment i send you strength and all the good vibes I can.
Jaxon was the third child (that I know of) to be diagnosed in ballarat vic in the last 12 months, and my anger at this and determination to do “something” is the only thing helping me be positive and face each day as we wake up, if that makes any sence.
We have been following Pippa’s story since February when our son was diagnosised and I just want to say that the way you write and share your feelings helps us know we are not alone on this journey.
We will send all our good vibes your way.
Hi Jodie,
Please get in touch if you think Jaxon could benefit from private music therapy sessions at home. The Robert Connor Dawes Fund ( rcdfund.org) can organize 10 fully funded sessions for you ( as we have done last year for Pippa and some other young people in Victoria) through our Music Matters Grant.
We would love to support in any way we can. Warm regards, Una ( una@rcdfund.org )
Sending ‘good vibes only’ your way!!! and lots of strength and love! xxx
Thank you for the update. I am so sorry for the place you find yourself in with Pippa. I understand how hard it is to not think too far ahead and to stay positive. But if you can the positive vibe is the best way to go, to keep joy and fun and peace in Pippa’s life for however long that may be. None of us are guaranteed any more than right now. Worry doesn’t change anything but hope can. You might only have hope for little things but having it is the only way we can move forward. Praying for you and sending only positive vibes your way. I hope tomorrow is a good day. Hugs xxx
Couldn’t have said it better myself Jo. Susie
xx
Thinking of you all at this very difficult time and sending only good vibes 😉
Jill
Sending you all the good vibes, possible. xx
Beautiful Virg,
It hurts to read your blog today. I can hear your pain. I wish we could banish every demon for darling Pip, we can’t. Your, James and Patrick’s love is the best armoury against them. It’s a strong love, all of you share it, it’s inspiring to witness. I wish you every good vibe Virg and Pip… I wish you love and light darling girl. Yarra sends special love and songs and if you would like a yarra visit just say the word. Xxc
Hi Virginia
Your writing is fantastic .
I am in awe of Pippa’s and your strength and determination. We are all with you on this journey.
Tell Patrick that we still have a helicopter trip to plan. Thinking great vibes to you all. Mark
Thanks for the update Virginia. All I can say is our love is with you all the way.
You have expressed & shared your pain with so many wonderful friends Virginia, loving & caring thoughts go out to you & darling Pippa. xx
Minute by minute and day by day … Wishing you lots of good vibes & positive thoughts as your journey with Pippa continues. Thinking of you always, love & hugs xoxo
Hey Virginia, claire and I have been following every moment you post,and are sending you the biggest set of French good vibes as we can muster.Love Claire and Russ
Beautifully written Gin. Am sending buckets of love and hugs and healing good vibes to you and all your children especially your darling Pippa.
Virginea, thank you for sharing your thoughts and feelings with us. You paint such a vivid picture of how Pippa is dealing with her ever changing abilities. Lovely to hear that her determination to keep those muscles working is ever strong. Hugs and strong, positive vibes coming your way.xx
What an amazing family, a mother who has made the best of a dreadful situation, two wonderful supportive sons and the bravest of little girls who is a truly one of the most gorgeous girls I have ever met. Virginia, I am in awe of you and we are sending you lots of good vibes (and are continuing to light up Europe). Wish I was there. All our love Claire, Russ and the boys. Xxxx
Beautiful Virginia, I am sending all my good and happy vibes to you and your beautiful Pippa and her amazing big brothers.
xoxo
Hi Virginia and family. We are thinking of you and sending you lots of positive vibes from Ballarat. The Hillgrove family xx
Sending lots of good, loving vibes to Pippa as well as yourself Virginia, James and Patrick. There’s so many great movies at the cinema right now, fantastic that Pippa is enjoying them. Xxxx
Loads of good vibes your way (and hugs in abundance). Am also holding your hand so very tightly. xxx
Very strong good vibes of love, hope, and support Virginia, This entry is heart breaking yet inspiring to us. You’re all amazing. Much love Pam xxxx
You guys are so inspiring, all of you ginnie. Alley I and I sending you good vibes all the way from Spain. Love you guys a lot. Xoxo
Sending you blessings Eleanors friend Toni