My First DIPG Symptoms

My first symptom was double vision in January 2017. I went to Jakarta Eye Center for a lot of times in February 2017, and did not find the cause, presuming idiopathic.

::: SPRING 2017

It was getting worse by month.
In March 2017, back home to Germany, I went to St. Vincentius Eye Clinic, where from the MRT they found a lesion in my pontine area of the brainstem. It is the most delicate part of the brain, that control eyes, swallowing, breathing, etc.

In April 2017, from PET Scan result Tübingen Neurologist diagnosed me with tumor grade IV. They suggested treatment immediately, but I wanted biopsy to be 100% sure.

5 April 2017 was the happiest day of my life. I married the most loving and kind hearted man I know.

::: SUMMER 2017

In late May 2017, I went through the stereotactic biopsy in Frankfurt. The result confirmed Pontine Glioblastoma Grade IV (DIPG). My parents came to Germany and took care of me. I can’t swallow. (Details biopsy side effects in other post)

June 2017, I was transferred to Karlsruhe Klinikum until mid-July for 6 weeks radiotherapy treatment and 4 weeks chemo.
(I will share more about the treatment in another post). I gained back my swallow ability. I lost my leg muscle, need support and wheelchair.

July 2017, discharged from hospital, suffered the side effects from high dose cortisone steroid. At home started reduce the steroid gradually. My parents went back to Indonesia, and my bestfriends Ashlee and Kayan came and took care of me during this hard times.

::: AUTUMN 2017

September 2017, as the steroid intake low, I slowly started making progress in walking with rollator.

October 2017, I can walk at home without rollator. However Chemo 5d/28d quite hit me with tiredness and hair loss.

November 2017, unfortunately MRT shows tumor back progressing. The doctor stop the temodal chemo (the best treatment) . Doctor said survival time is less than a year, in months.

Next Wednesday 22 November,will meet my doctor to discuss another possible treatment.

I went through months of treatment and it was not easy for me and people who took care of me, especially my husband. But I also experienced so much love and support like never before.

DIPG is uncommon in adults and I have not find DIPG support groups for adults yet. I hope other DIPG warriors can find this my Facebook page and knowing you are not alone.

I pray for much love, peace and courage for all DIPG warriors wherever you are.

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