THIS IS DIPG

Friends,
I’m still here.
I’m still writing while I still can.
Today, I want to tell my journey with DIPG.

::: HONEYMOON PERIOD

It started with double vision,
in January 2017.
I thought I was just tired.
But, it wouldn’t go away.

I went to Indonesia in February 2017.
I received blessings from my parents and my family to marry Tobias.
While I was in Jakarta,
I did a number of checks of my eyes.
Nothing was found and nothing pointed towards this being a symptom of DIPG.

Tobias was a bit concerned,
he said let’s do some more tests,
when back in Germany 🇩🇪
after our pre-wedding honeymoon to Bali.

After getting back to Germany,
I immediately was hospitalised in the eye Klinik.
I did numerous tests and scans.
One night a professor and his colleague came to us,
and told, from an MRI scan,
he could see a lesion in my brainstem.
He referred us to a university hospital in Tübingen,
the best for Brain Disease.
Me and Tobias were in shock,
after a long pause,
I told him I wanted to break up with him,
I asked him to cancel our planned wedding.
To my surprise,
he didn’t let me go.

Quite the opposite: He called the marriage registry office and asked for the earliest possible date for a wedding.
We got married on April 5th, 2017 in a very simple process, witnessed by a good friend of ours.

Then,
We tried to find where I can go for a brain stem biopsy.
It’s a robotic stereotactic biopsy in Frankfurt.
Only 4 hospitals in Germany were able to do it.
So, I had to queue up to a month.
Before I did a biopsy,
I did several tests,
I did a lumbar puncture,
I did an angiography,
we excluded the possibility of other diseases,
that could mask as DIPG.

It’s Monday, 22 May 2017,
biopsy day.
Suddenly, I was up to be the first patient biopsied.
Tobias and my parents were on their way,
from Karlsruhe to Frankfurt by car.
I had to say “see you soon” on the phone,
it was supposed to last 2 hours,
it took six hours in the end,
there was a complication, some bleeding🩸in my brain
it left me unable to swallow,
unable to walk or talk or even get up from my hospital bed,
it left tingling pain 24/7 on my left hand.
However, the biopsy was successful.
The doctors were able to collect enough sample.

Honestly,
it didn’t matter if I did the biopsy or not,
I did a FET-PET Scan and an MRT,
it was obvious it was a high grade
midline pontine glioblastoma.
Actually the doctor suggested me,
immediate radiation and chemo treatment,
even without biopsy.

Still, I decided to have a biopsy,
to find out which mutation I had
and just for peace of mind,
to confirm that it really is DIPG,
and not something else.

a few days after the biopsy,
a doctor sat down with us
He confirmed
I was nothing else,
but DIPG Grade IV WHO.
A curative therapy was not possible.
The doctors there gave me a maximum life prognosis of 2 years.

I stayed 10 days in the neurosurgery department of the university hospital Frankfurt,
then with an Ambulance,
they moved me to Karlsruhe City Hospital.
I immediately felt at home there and was taken good care of.

I stayed in the Karlsruhe City Hospital for six weeks of radiotherapy,
My parents visited me everyday,
so Tobias was able to go to work.
They took turn to accompany me.

Miraculously, I recovered my ability to swallow,
just a week before my 36th birthday.
In the morning my birthday wishes came true,
we went to a bakery Meier,
bought a Nussschnecke (a nut pastry)
and drank an Earl Grey tea,
on my balcony.

Tobias even gave me a surprise,
a BBQ party attended by a lot
of our good friends.

During the last cycles of radiation,
and with high doses of cortisone,
I developed sensitivities to drafts, lights, and temperatures.
So, in the hot summer of 2017,
I wore winter clothes,
inside and outside the rooms,
I could feel the breeze.
I requested always to close the doors.
It was stuck inside my house.
Sunlight caused me headaches.

Tobias and my parents,
and my friends from HongKong 🇭🇰 and Singapore 🇸🇬,
had to bear the heat and stuffiness inside my house.

After radiation and chemo treatment,
I got better.
In mid September 2017,
I became normal again.
No more sensitivities.
In November 2017,
I started accompanying Tobias on his business trips,
I flew a lot across Europe.

In June-November 2018,
Tobias took me on his bike every morning before 8 am,
to attended a German language class and integration course.
At noon, I went alone to a bakery,
bought fresh bread,
despite my double vision,
despite my 24/7 tingling pain on my left arm,
everything was normal.

I was able to do things by myself.
In November 2018, I was certified with level B1 German language and I passed the integration course with flying colours.

I had numerous chemo treatments,
from Temodal, CCNU, Procarbazine,
the MRT every 3 months,
showed a stable condition,
or a progression.
At the end,
all failed me.

In December 2018,
I had a progression,
my doctor suggested a second round of radiation therapy.
I had a 15 additional sessions,
during Christmas and New Year 2018/2019.

Then, I started with Avastin therapy.
Every two weeks we had to go to the hospital,
first check my blood values,
then I received the immunotherapy intravenously,
The tumor was stable for a year.

Me and Tobias flew to Korea,
met my parents, who flew in from Jakarta
and my brother’s family, his wife is Korean.
We celebrated Christmas 2019 and New Year 2020 together.
We met the Korean family of my brother.

Despite “scanxiety” every 3 months,
I enjoyed 3 years of life.
I had a good quality of life,
and I could do whatever I wanted.

::: THE REAL DIPG

This is DIPG,
in February 2020,
I went to Jerusalem and Tel Aviv with Tobias.
I felt weaker walking the old town of Jerusalem.
I knew something was wrong.

This is DIPG,
the MRT in January 2020,
showed the tumor was stable,
but they found necrosis/ dead cells.
Maybe from the lastest radiotherapy.
I continued with Avastin.

This is DIPG,
the MRT in March 2020,
still showed a stable tumor with necrosis.
I continued with Avastin.
My doctor presumed everything was fine.

This is DIPG,
I was getting weaker slowly.
I started increasing cortisone.
In a month from 2 mg to 22 mg.

This is DIPG,
COVID-19 pandemic came in Germany.
Started From March 2020,
Tobias worked from home.
I was getting weaker everyday.
I started using a walker at home.

This is DIPG,
I requested a FET-PET Scan.
To our surprise,
it showed progression of the tumor,
there was no treatment available anymore.
No more Avastin.
No more radiation.

This is DIPG,
I thought increasing cortisone helped.
It didn’t.
I think the best for me now is:
4 mg breakfast and 4 mg lunch.
My doses are still higher than that though.

This is DIPG,
things deteriorate rapidly.
I no longer can speak properly,
I no longer can walk,
I no longer can hold myself,
I no longer have energy to do things,
I no longer can sit straight,
I no longer can go to the toilet alone,
I bruise easily
if Tobias doesn’t hold me, I fall to the floor.

This is DIPG,
everyday I am getting worse.
I became 100% crippled,
I became 100% disabled,
I lost 100% of my muscle power,
I lost 100% of my bodily functions,
I am mentally 100% clear what’s going on,
but, I am trapped inside my own body.

This is DIPG,
Tobias cancelled all of his seminars and workshops.
He became my only care giver.
I am loved unconditionally.

This is DIPG,
we decided that we don’t want to stay in the hospice hospital,
we wanted to be at home 🏡

This is DIPG,
a palliative care nurse assists us with what we need.
We have a comfortable bed that can lift me up,
we have a wheelchair and a toilet seat,
we have a shower lift,
we have oxygens bottles,
we have morphines and anxiety drugs.
My palliative nurse discussed terms of interventions if I stop breathing or my heart stops beating.

This is DIPG,
I need to hear assurances from Tobias,
“I always love you”
“I am here for you”
“Don’t give up”
“You’re very brave”
Etc.

This is DIPG,
it’s frightening and overwhelming,
I communicate with Tobias,
we ask open and honest questions,
about everything.
It reduces my fears and isolation feeling.

This is DIPG,
there are a lot of miss-understandings,
there are a lot of miss-communications,
there are a lot of lessons-learned,
there is a lot of forgivenesses,
there is a lot of understanding,
there is a lot of finding new ways,
there is a lot of patiences,
there is a lot of hurt and pain,
and so on.

This is DIPG,
one thing we know,
we love each other.
We never argued,
we never assumed,
we talked sincerely and honestly,
I learned to trust him,
he loves me unconditionally.

This is DIPG,
the reason why I don’t want to see so many people,
is because sometimes they pity me.
I am mentally completely there,
but just trapped inside my body.
Many believe that I am mentally disabled and talk to me like that.

This is DIPG.
100% lost yourself.
I am lucky.
I had almost 3 years of honeymoon period.
I can communicate with Tobias,
what I want,
what I need,
by typing or pointing.
For now.

This is DIPG,
there are so many children,
unable to properly express themselves,
their needs.
My heart cries, is pained, crushed and destroyed,
for them.

This is DIPG,
I need a head and neck holder,
so my neck and head won’t flip flop around.
Tobias knows he needs to be careful,
and hold my neck and head all the time when he moves me.

This is DIPG,
I wake up feeling uncomfortable,
I wake up in pain,
I wake up depending 100% on Tobias,
I wake up with in a cloud feeling,
I wake up with severe double vision,
I wake up with head pressure.
I wake up with a sense of guilt.

This is DIPG,
I need Tobias.
Tobias is always present,
he gives me a sense of security.
I love him so much.
Tobias is my everything ♥️

This is DIPG,
I can’t pee if don’t drink enough water.
It’s uncomfortable to go to bed with a full bladder.
Sometimes I sleep before 10 pm.
I made sure I drink enough liquid,
so I can pee before bed.
Very often,
I feel I want to pee,
but I can’t.
It’s uncomfortable.

This is DIPG,
Tobias rolls me over to my liking,
so I can sleep.
In the middle of the night,
I wake up and I need to pee.
Tobias needs to wake up,
and move me to our toilet seat and back to bed.

This is DIPG,
I need a travel pillow
for my neck and head
so it feels a bit more comfortable.
I need a rigid neck and head holder to go out in a wheelchair
So, it will hold still and not flip in all directions when we hit bumps in the road.

This is DIPG,
I can’t eat properly anymore.
I need Tobias to feed me.
I need everything in small bites.
I make a mess when I eat,
I need soft food,
I eat very slowly.
Some children, they loose their ability to swallow.

This is DIPG,
I am no longer embarrassed with pooing,
in a toilet seat,
in my living room or bedroom,
I need Tobias to clean me all the time.

This is DIPG,
I cannot cook any longer,
but I wrote Asian recipes for Tobias.
He loves it 👨‍🍳

This is DIPG,
every morning I feel uncomfortable,
Tobias brings me to the bathroom,
together we brush our teeth,
then Tobias showers me,
then Tobias dries me,
then Tobias combs my hair, creams my body, cleans my feeding tube, and dresses me.

This is DIPG,
friends and acquaintances give me advice,
on special diets and alternative treatments.
Some even try to sell me supplements.
I believe in evidence based therapy,
alternative treatments give nothing but false hope.

This is DIPG,
I was Pharrell happy,
by writing and reading your comments on Facebook page DIPG Online,
by writing and reading your comments on
my website http://titien.de.

This is DIPG,
English is my 3rd language,
after Bahasa Indonesia and Chinese,
Yet, I wrote more than 130 articles.
Thank you for reading my stories.
Thank you for giving me encouragement,
with uplifting and heartwarming comments.
You’re so kind and sweet.
Sometimes, I don’t know what I want to write.
But, inspiration just comes.
God must love you so much.

This is DIPG,
there are many choices taken away me.
To have any choice is beneficial.
What to wear, what to eat,
a favorite activity to do,
like feeding ducks 🦆,
or stay at home watching birds,
and medical decisions.

This is DIPG,
a lot of times,
I express my grief.
I cry a lot,
sometimes it’s for childish reasons,
sometimes I am over-sensitive.
Allow me and comfort me.

This is DIPG,
my dying process has it’s own timeline,
it could be months or weeks,
it is a difficult time.

This is DIPG,
every movement is uncomfortable and painful.
My right hand is getting weaker.
I don’t know what awaits me,
I hope till the end,
my wish is that I can still type on my iPhone,
my wish is that I can still swallow,
This is my only request and prayer.
But, whatever comes,
may His will be done.
I have a Patientenverfügung
(A living will detailing how I wanted to be treated if things get worse).

This is DIPG,
my parents and my brother,
have to be comfortable asking questions,
about my conditions to Tobias,
through a video call.

This is DIPG,
I didn’t know if was an effect of the cortisone,
but back in 2017 in the hospital
everyday I had a vision,
and now I have a vision too,
I wasn’t left alone,
there’s someone always sitting there on a bench.
I knew He’s the Almighty who will walk with me to the gate of eternity,
I can’t see His face,
it’s too bright,
but I felt known and loved by Him.
I always kneel down,
and sing worship to Him.

Friends,
this is DIPG,
be grateful when you can move freely.
Be grateful when you don’t need to depend on someone else to do things.
Be grateful when you can swallow easily.
Be grateful when you can love others.
Be grateful when you can express your thoughts, your wants, and your needs.
Be grateful when you’re loved unconditionally.
Be grateful when someone gives their life to you.
Be grateful you don’t have DIPG.

Love and hugs,
especially to all DIPG patients and families.
Titien ♥️

Check this out:

“If the Spirit of him who raised Jesus from the dead dwells in you, he who raised Christ Jesus from the dead will also give life to your mortal bodies through his Spirit who dwells in you.”
‭‭Romans‬ ‭8:11‬ ‭ESV‬‬


72 Replies to “THIS IS DIPG”

  1. Titien,
    You are an inspiration to me. I always look forward to your posts. I especially love your recipes that you posted in the past!

    You are so loved!

    1. Hi.. Tien, it’s Rike here, i dont know if u still remember me or not, but we were classmate in highschool at BHK. Well fair enough if u are forget about me since we are not close anyway, but i do remember you.
      Mmm how do i start.. i remember few years back i accidentally open your facebook from our mutual friends, at first i dont recognise you at all, i just couldnt believe how stunning and gorgeous Titien can be, especially with you sun tan skin. My expression when I see ur photo was “WOWWW”…
      And That is also the same expression that i have now after i read your DIPG story and see your photo.
      I admire of ur braveness and strenght to go through all this and never give up
      I envy of the love that u and tobias share each other, it is trully unconditional love.
      Please stay strong
      Big Hug…

      1. Thank you Rike ♥️
        Honestly we don’t that close ya.
        I don’t remember you
        But I am thankful that you’re read my stories.
        And even stalked me on Facebook 🤣🤣🤣😆😁👍.
        Rike I believe you will have your own stories, you’ll have your strength and braveness. Because you’re also loved.♥️🥰👍😊
        Love-t

  2. Dear Titien,
    thank you for sharing your wonderful words. I wish you all the love, faith and peace in the world for the journey that lies ahead.
    Love
    Anna

  3. Dear Titien,
    We met only very briefly in Heidelberg in late 2017 and I had no idea you were going through these difficult times. Thank you so much for being such an inspirational person! Your reminders are so important and know that no matter what you are going through, your uplifting messages will be used to improve the lives of others and to help them appreciate what they have. You have certainly helped me and I’m very grateful to you. All my love and my thoughts are with you XXX

    1. Dear Titien,
      I don’t know you personally but found a link to your story on my Facebook timeline.
      Thank you for the reminder to be grateful for all of the day to day experiences that many of us take for granted.
      Thank you for taking the time to describe your experiences with this very challenging disease.
      And finally, thank you for your spirit! So many of us would not have had the strength to continue on as you are. I’m so happy that your loving husband is there to support you. You are both in my thoughts and prayers.

      With deep love and gratitude,
      MaryBeth Burton

  4. I stumbled across your story as my friend’s daughter has DIPG. Thank you for sharing your DIPG journey as your honesty, clarity and strength is inspirational, and I think of you often from Australia. God bless you and your incredible husband. May we find a cure to this insidious disease.

  5. Oh Titien what an inspiration you are, Tobias and you are real life heroes.
    My son died of this dreadful disease in December after only 3months from diagnosis. Your post is raw, emotional, real and heartfelt. Thank you for shareing it with us all. I send you both all my love. ❤️

      1. Titien & Tobias, thank you for your posts. I am encouraged that the Christian hope has been carrying you each day with comfort and strength. Your faith and thankfulness is a testimony to all those you have touched.

        I leave you with a verse from Stewart Townsend’s song:

        Through present sufferings, future’s fear,
        He whispers ‘courage’ in my ear.
        For I am safe in everlasting arms,
        And they will lead me home

        In Christ
        Angela

  6. So many hugs & love to you Titien & Tobias. I can only thank you for all you have shared over the years. I remember reading about your German classes after I moved from New York to South Carolina and being in absolute awe of everything you embraced & I was struggling adapting to a new state & look at you! Embracing a new country with everything going on. You certainly gave me encouragement when I really needed it. You still do. I wish I had magical words to change this….thank you for being you & thank you for updating

  7. Hi Titien
    The grace, fortitude and openness with which you and Tobias are coping with this extremely distressing situation leave me almost speechless with admiration (and often in tears, too). I wish you and Tobias continued strength in every respect.
    You’ve taught me a lot about life, love and God. Thank you so much for sharing your thoughts and your life. You and Tobias are in my thoughts and prayers at all times but I’m having a bit of trouble reconciling God’s unconditional love with the suffering brought about by DIPG.
    Sending you and Tobias good thoughts and prayers.
    Hugs
    Elisabeth

    1. Thanks Elisabeth,
      God is good all the time.
      Thanks for remembering us in your prayers and thoughts ♥️👍😊😘

  8. Hi Titien, reading your summary of your unwanted journey with DIPG makes me treasure and value each moment even more.
    Wishing your simple tiny wishes that you still ask for will be granted up until the very end. We love to hear from you and read about your thoughts. You inspire everyone here.

    Uncountable spicy greetings 🌶🌶🌶🌶🌶
    Holger

  9. Hi Titien, you may not know me but we’re in the same highschool in BHK. I’ve been reading your stories for quite some time. Sometimes I feel ashamed of myself for whatever small things that I’ve been complaining in life. Thanks for sharing your stories with the world. Keep up your post and positive attitude towards life. You and Tobias are so blessed to find each other in life. Cheers always!!!

    1. Thank you for offering advise and comfort when our son (Austin) was struggling with DIPG. Despite being effected by the disease yourself, you took the time to help others. We think of you often and pray for you.

  10. Your strength is amazing, Your journey is an inspiration and i pray for peace during this very trying period. Tobias is noting less than great, both of you have exemplified what true love and committment is all about. We love you guys. God bless you and Tobias.

  11. All of your posts are so inspiring and real! Every word is full of hope and I know that your story is blessing many people out there who feel lost and hopeless! Praying for you and Tobias everyday dear Titien!

  12. Titien,
    thanks for all your thoughts and insights. You and Tobias, you are very strong and honest, and you share your love, which is great. I dream of hearing my doorbell ring, both of you standing there, saying hello again, no illness, no special news, just hello. This is not possible, but you made so many things possible for yourself, and for many people reading your thoughts and reports, I’m sure. Not many people have the strength and the ability and the will to be so honest and clear about a situation like you are going through. It’s brave and good to speak out the unspeakable. It belongs to life. Pharrell happiness to you 😍
    Love and hugs,
    Esther

  13. Hi Titien,
    This is Lan and I moved to US 2016. Still remember the days we spent together in Beijing BICF. You are always uplifted and love to smile. I met Kaiyan when she visited US after she attended you in Germany in 2018 I believed. she mentioned about you and then I knew you are ill. Encouraged by your sharing. May God continue to be your strength, joy and peace. Our father loves you very much. In him we have external life. Stay up and you and Tobias are in my prayer. Love! Lan

    1. Hi Lan,
      Oh I miss Beijing and Bicf!
      Kayan is always a mutual friend 🤣
      All the best ya in the USA 🇺🇸
      Thanks ♥️♥️

  14. Hi Titien,
    You and Tobias are so inspirating.
    Your articles demonstrate so much love to each others, so much love of your life.
    Thank you for sharing with us all your so precious times.
    You are both in my prayers
    Olivia

  15. Hi Titien and Tobias,
    It makes me Pharrell happy to read another update. You are beautiful inside and out. Love you both and know that there are a lot of people thinking about you. Big hugs.

  16. Titien,
    Thank you for continuing to write, and as long as you write, I will read it! I don’t know how you do it, but you have a way with words. Your posts are so real and honest. I pray for comfort and peace for you. Thank you for sharing your story and creating awareness for DIPG. Hugs ❤️

  17. Hi Titien and Tobias,
    Helena here, the daugher of Nessy Sarinda, your relative from Indonesia. I just want to thank you for continuously sharing your journey, being honest and vulnuerable through your writings. I hope you know that you two have blessed and inspired so many people to keep the faith in Jesus Christ and to share unconditional love with one another. I pray that God will continually display his grace and shower you two with mercy in any circumstances that you’re facing.

    Sending love from Seattle,
    Helena Huray

    1. Hi Helena, 🤗
      I miss you!
      Baru graduate ya. Congratulations ya.
      Wish you all the best ya.
      Keep shining, happy and healthy sis.
      Love you ♥️🥰👍

  18. Titien & Tobias! Sharing your Journey is Heartbreaking but it is necessary, Courage comes to many when their Struggles are real, I tear up reading your updates but not in pity I absolutely adore everything you stand for Titien you have my Respect! in this time of immense pain you still share with your determination to get your message across I have never met such a selfless soul I Adore everything you stand for & I will continue praying for a cure to end this terrible disease AROHANUI💞

  19. Thank you, Thank you, Thank you, for taking the time to share your journey. Your experience is so so so appreciated and valued, and while each journey is different you are very much giving a voice to the little DIPG warriors who unfortunately cease to be able to communicate and share their journey as they cease to be able to speak, I am always in awe of how much you write and how long it must take you to not only write so much but also so well, so detailed, so perfectly put and organized. My body isn’t yet failing me but yet, I would fail to do the same in most occasions, so thank you for taking the time and going through, likely excruciating effort to not only share your journey but to encourage, empower and love on others.

    I have commented on your grace once but feel compelled to do it again. I genuinely hope that when my own end comes near (whenever that may be), I will have enough time to remember you, your words and your journey that fear, if it is there, will subsides as I attempt to walk into that upcoming journey with the same grace, love for other and strength you have displayed.

    I think wondering ”why?” tragic things like DIPG happens to good loving people (like you) is too hard of a question, and despite not being Christian I would say that when in need of pondering on that question the answer is probably ”for this”, this blog, this love you show (and hopefully get back), this strength and the voice you give a community that’s been silenced by the monster that is DIPG, the mark you are leaving on people each time you post and will most definitely leave once you go on to your next journey. I genuinely hope that once on the other side, you will be able to look back at this and think ”that was worth it” and realize how much you and your journey have changed the world (you seem to have impacted readers from all over the planet) in the meantime, I hope the transition is as painless and uncomfortable as possible and that you continue to be able to type those beautiful articles we are all so fond off (and keep on being able to swallow so we can continue to see you enjoy some nut pastries!)

    Lots of love x
    Melissa

    1. Thank you Melissa ♥️
      For your encouragement and long heartwarming messages. I love it ♥️😉
      You know you’ll have your own story and it will be beautiful. Don’t be afraid, just trust, that everything will be ok. You’re loved and never forsaken ♥️🥰
      Love, t

  20. I just read your story, you are an excellent writer and your message of gratitude and living each day to the fullest comes across loud and clear. Sending you and Tobias peace, love and strength. I’m so sorry for all you both have endured 🙏🏻

  21. I found your story through a Facebook post. Thank you so much for sharing your journey. Sending love and prayers from New York, USA, to you and Tobias. ❤️🙏

  22. Hai Titien, ini aku Picilia Awang, teman sekelas mu 1-4 di BHK ingat enga 😄, aku ingat sama Titien masih berambut pendek dan kacamata salah satu temen baikku di 1-4. I miss you Titien, sending you my hugs and kisses 🤗 salam untuk Tobias ya

  23. Dear Titien,

    You are in the position now that all of us will be in one day. This is what unites us, all beings on this earth. I admire you with my whole heart and appreciate what you are teaching all of us. I hope all of us will be able to be as brave and wonderful one day as you are.

    Alles Gute.
    Julia

  24. Titien, I just read your poem on DIPG and was touched! I love the section that says, “Be grateful…”. Indeed we can all be grateful to God for something. Living in a culture of entitlement leaves one feeling empty and wanting more! You have shown me what it is to have DIPG. My friend Catherine lost her 5 year old grandson to DIPG. We followed their journey every step of the way. You put to words what he probably could not. I am amazed that you learned German while you were sick! I am touched by your husband’s love and devotion for you. May God grant you “swallowing” until the day you take His hand and walk with Him I to heaven. That is my prayer for you. Hugs to you, dear woman and thank you for shamelessly sharing your journey with us!

    1. Amen 🙏 thanks Rebecca ♥️
      Yes, adults know how to communicate our wants and needs. Even so, DIPG makes difficult. I can’t imagine children who can’t properly communicate. It pained my heart so so much. thank you for remembering us in your prayers.♥️

  25. Brave, beautiful Titien I will pray you can continue to swallow. My heart hurts reading about your struggles.

    Tobias, I pray your back is feeling better, as you faithfully, and lovingly care for Titien. You are an amazing man, and a stellar example of devotion and selfless love.

    Peace and love to you both.

  26. I pray for you. You are an inspiration and a voice for children who have DIPG but can’t express. I can see the love in Tobias when he looks at you. You are both a gift from God to each other. ❤️

    1. Hi Nancy.
      Thanks. Ya, that’s the difference, we can express what we want and need. But children can’t. That’s crushed my heart. Thanks Nancy ♥️

  27. You are an inspiration and make me realise the importance of appreciating EVERYTHING!! No matter how small, I will keep you in prayer for comfort and no pain ♥️

  28. Dear Titien, dear Tobias,
    I’m in awe of your strength, courage and honesty. Reading your posts always leaves me in tears, and yet they’re also so heartwarming and inspiring. The love you’ve both found, and the strength it gives you, is amazing. I wish you both continued courage, and that you can keep on enjoying each other’s company and love. Sending you lots of love
    Eavan.

Leave a Reply

Your email address will not be published. Required fields are marked *