ADULTS DIPG & CHILDREN DIPG

It’s the same illness
it’s DIPG,
It robs our muscles and bodily functions,
Here are the differences between adults and children being diagnosed with DIPG.

Adults with DIPG,
we know what we want.
Sometimes we’re still able to communicate it.
Children with DIPG,
they can’t properly communicate what they want.

Adults with DIPG,
we know how to express what we need,
even though DIPG makes it difficult for us.
Children with DIPG,
they’re unable to express their needs.

Adults with DIPG,
know the best dose of dexamethasone.
For example, my doctor suggested me to go for 4 mg – 2 mg.
But for now, most comfortable for me is 5 mg – 5 mg.
Children with DIPG,
they don’t understand this.
They just listen to the doctor not to their body.

Adults with DIPG,
we know the best and the most comfortable neck and head holder.
Children with DIPG,
they can’t tell which one is the best for them.

Adults with DIPG,
we know where we have pain,
then we’ll have medicine to ease the pain.
Children with DIPG,
sometimes they’re just crying.

Adults with DIPG,
we can drink enough liquid to pee before going to bed
Sometimes it’s still false alarm,
and we can’t pee.
It’s uncomfortable.
Children with DIPG,
they’re just bearing on the uncomfortable feelings.

Adults with DIPG,
sometimes we deal with constipation,
but we know how to deal with it.
Sometimes with medication.
For me, every morning,
A big spoon of Psyllium seeds and a sachet of Movicol,
it works great.
Children with DIPG,
sometimes they just don’t know how to express it.

Adults with DIPG,
we know on which side we sleep most comfortable.
Children with DIPG,
often they’re unable to explain and maybe just cry.

Adults with DIPG,
we deal with guilt and we cry because we feel helpless.
Children with DIPG,
they cry a lot because they are uncomfortable

Adults with DIPG,
we can tell our spouses, parents, medical staff what we want or need.
Children with DIPG,
often they’re unable to express themselves.

Adults with DIPG,
we know when we eat according to our liking,
or when it’s enough.
Children with DIPG,
sometimes they’re unable to express.

Adults with DIPG,
we have to learn to be patient with ourselves,
we rapidly become 100% crippled.
Yet, we’re aware why this is happening.
Children with DIPG,
they’re maybe confused about what is going on with them.

Adults with DIPG,
we have to learn to be patient,
with our spouses, or families,
there are a lot of misunderstandings,
there are a lot of miss-communications.
Children with DIPG,
Even more patience from the families is needed.

Adults with DIPG,
sometimes their spouses are still able to work from home,
well until we are getting worse,
maybe then they’re just stop working,
and spend time with us.
Children with DIPG,
the families need to spend 100% of their time on their children from the moment they start deterioriating.

Adults with DIPG,
we know our final wish.
Children with DIPG,
sometimes yes,
sometimes no.

Adults with DIPG,
sometimes like I do,
I have a living will (Patientenverfügung)
a notarized letter which I wrote,
how I wanted to be treated when things get worse.
It’s a privilege to be able to decide what you want to do with your life.
Children with DIPG,
I don’t think they understand it.
Parents decide for them.
There’s no right or wrong,
they are just too small to understand and make a decision like a living will.

Adults with DIPG,
sometimes we have a hobby,
that makes us happy and forget.
For example,
for me sharing my stories,
reading your comments ,
makes me Pharrell happy.
Children with DIPG,
often they don’t understand what a hobby is.

Adults with DIPG,
when we’re able to swallow we can articulate what we like.
When we’re unable to swallow,
either we know how much food we need through our PEG,
or we can decide not to get food at all.
We can decide what we want.
Children with DIPG,
parents decide for them.
Again, there’s no right nor wrong here.
They’re just too little to decide.

Adults with DIPG,
sometimes we just fall into arguments because of DIPG.
Children with DIPG,
they’re even don’t know what to argue. They’re just listen to their doctor and parents.

Adults with DIPG,
can think about their dignity.
They also don’t like when others pity them.
Children with DIPG,
they think simpler.

Adults with DIPG,
can tell what gives them pains and discomforts.
Maybe it’s draft, or sunlights.
Children with DIPG,
often they can’t.

Adults with DIPG,
we deal with “scanxiety”.
But we can lay still.
Children with DIPG,
sometimes they’re sedated during the MRT.

Adults with DIPG,
It is heavier to move them.
Children with DIPG,
lighter to move them.

And so on.

My point is,
DIPG is indeed painful for all of us.
But it’s more difficult for children and their parents.

It crushes my heart to know those children are not able to express themselves like us, adults.

But one thing for sure,
we are so thankful,
we are so grateful,
we are so appreciate,
for you taking good care of us.
We love you.

To all DIPG families,
I understand the situation,
I send you DIPG children and families,
love and deep hugs.

Love,
Your Titien.

PLEASE FEEL FREE TO SHARE MY STORIES AND PHOTOS TO INSPIRE OTHERS OR TO SPREAD DIPG AWARENESS.

check this out: https://youtu.be/RrKbu6OwJv0

I am still able to eat
The Maiers ♥️
Still can swallow ice cream 🍨 it’s rafello flavor haha 😆
A Saturday morning routine. Still can do it 😊
Though it’s not easy and was uncomfortable to do,
but I liked it 🤗
Thanks 😊♥️
Feeding ducks 🦆 with unflavored sunflower seed
the balloon 🎈 rises 👍
First time for me saw this
I like no. 2 & 3
My neighborhood
Weißwurst. I remembered Lena and Henning.
Their favorite breakfast 🤗😘
Today’s morning 🤗♥️

31 Replies to “ADULTS DIPG & CHILDREN DIPG”

  1. perjuangan berat buat orang dewasa maupun anak2.. tapi kalian semua orang2 hebat yang dipercaya Tuhan untuk mempermuliakan nama NYA.

    jiayouuu tieeennn..
    menunggu cerita berikutnya 😄

  2. Titien I love you. I’ll never stop this. Thank you for coming into my life and teaching me how to be a better person.

    And…Every duck I meet in my life from here on in, will be treated with Titien respect!

    ❤🦆🌶

    1. 😂 And…Every duck I meet in life from here on in, will be treatEd with Titien respect!
      This quote makes me laugh 😂 🤣😊♥️🥰👍

  3. Thankful you are getting out & are able to do things that make you happy. And, glad no Coypu near those cute ducks! Always am sending hugs, love & prayers to you & Tobias

  4. Dear Titien,
    Thankful that u and tobias are able to do things together that make both of u happy. You inspiring me to become better person. Thank you for sharing. Always love u and praying for u.

  5. Dear Titien
    I makes me really happy to see you and Tobias enjoying happy moments together (and making sure the ducks won’t starve😊).
    Thank you so much for your wonderful posts. They saw me through major surgery 3 weeks ago and are a daily help and inspiration during my strenuous and very painful post-surgery rehabilitation programme. You sure make your readers better people and better believers.
    Continued prayers, hugs and good wishes
    Elisabeth

    1. Thanks Elisabeth ♥️😘
      I wish you good recovery and good health.
      Yes, ducks 🦆 are well fed by us 😂

  6. Thank you for providing a window into this dreadful disease. We felt helpless and devastated as DIPG slowly claimed our little boy. Luca was too young to describe what was happening to his body, and it was agony to behold. My sadness and loss is overwhelming, but your posts are strangely encouraging. I wish we lived closer, and if I did I would come over and cook for you. Of course I would bring gluten free bread crumbs for the ducks, too! May God’s peace continue to sustain you and give you strength.

  7. I love seeing you outside, and at the bakery!! I pray that you can continue to enjoy the outdoors!! I am Pharrell happy when I see a new post from you! ❤️

  8. I learned so much from your post Titien! The needs of a patient is more than medical care. It’s human care! I‘ve been reading your blogs all along but only recently began to leave comments. Mainly because I’m a caregiver to my mom and don’t always have so much personal time. I love your writing. You and Tobias have made terminal illness real and personal. And helped me as a cancer survivor and caregiver see the joy and resilience in caregiving. My faith is increased because you never forget to give honor to God and being grateful. Pumped up to start my day in LA. Lots of love to you. ❤️❤️❤️❤️❤️

  9. Prayers 🙏 for you and Tobias. Thank you so much for sharing your thoughts. It not only tells us HOW to pray for you, but helps others cope with their child on this journey. Titen you are such a blessing and I thank God for you. May you be blessed today.🤗

  10. Dear Titien,
    Thank you for sharing so many wise thoughts. I admire how you and Tobias master everything and that you give us so much positivity, even in the hard times.
    You two are such a strong dream team! ❤️

  11. Kia Ora “Beautiful Warrior Princess” Sending Much Love Much Light! You speak truth in regards to hardships with this disease amongst Adults & Children it is a Journey no one should walk alone, Your Courage Your Strength is a true blessing to the people you will inspire as your story has touched my Soul in so many ways AROHANUI💓

  12. Titien,
    You are so empathetic and caring, thinking of others, even as you are struggling. Bless you.

    I love the happy pictures of you and Tobias as you enjoy your outings. Hugs to both of you as you enjoy your time together.

    We have a few lovely duck ponds where we live and when my kids feed the ducks, I think of you. We got the ducks unflavored sunflower seeds and they were Pharrell happy to eat these treats! 🌻🦆🦆😀

  13. Titien and Tobias. I have read your posts. Your words are so inspiring and heartbreaking at the same time. You are attentionate and caring with each other. I feel blessed knowing about your story and sharing part of your journey. I wish you and Tobias many moments shared together. (Please, apologize ou clumpsy words, I’m not fluent in English… and my German is worst !) . Sending you all my thoughts. You are in my heart.

    1. Hehe, English, German are also my third fourth h languages. Thanks for reading my prayers and remembering us in your thoughts 👍😘😊

  14. Thanks for sharing. I like your honesty and your love. Your path is so hard but you show no signs of bitterness. I learn from you.
    Love, Heike

  15. Titien what a beautiful post and gorgeous pictures! I love the one with the hot air balloon.

    I wish you love and hugs and look forward to the next post. Xxx

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