December 3, 2016 is a day we will never forget… our 11 year old daughter Sarah smiled at us and the left side of her face did not move. We took her to Childrens hospital and 8 hours, many doctors and an MRI later were told that our baby has DIPG.
While a doctor was pointing out where this tumor is located and what that means all I could do was look at another doctor who was standing to the side shaking his head and telling us how sorry he is… we were told that this tumor is inoperable, there is no cure and it was highly unlikely that a biopsy could even be done. We were told life expectancy is 9 to 12 months…
December 5th a blind biopsy was done and a shunt was placed in the top of her head to drain the excess fluid that was causing the beginning stages of hydrocephalus. Surgery started at 9am and she was brought to a room in ICU at 4pm… I think we walked a thousand miles during the 7 hours that she was in surgery… 2 days later she smiled at me and her entire face lit up! A full smile! but we knew this was only the beginning…
We began researching clinical trials, anything that could stop this monster of a disease that had decided to try to take our beautiful little girl away from us. After finding out that because of our daughters mutation (DIPG always has a mutation) k27m, that she is not a candidate for this trial, because her hla typing is not the correct typing for that trial she is not a candidate for it either, one reason after another our daughter did not fit the trials that were not saving lives anyway so the search continued.
A clinical trial in New York is being done using Convection Enhanced Delivery which involves many surgeries and is very dangerous so we decided to search again and found the same techinique being used in London … A doctor in London is using nanobots to map the blood vessels and direct the catheter to the tumor and this consists of one surgery! Reading on we find that not only is the surgical procedure far more advanced but he has children who are still with us 29 months after diagnosis. We were so excited!!!
Finally we found what we were looking for! Promise, hope! only to be told that our insurance will not cover the private hospital in London where this surgery takes place, that it is not yet an approved treatment, we are so sorry….I refuse to accept that! I knew there had to be another way because I could not let a lack of funding be the end! The initial surgery is somewhere in the area of 63 to 70,000 £ and each treatment afterwards is $8,600 £. With out the funding our chances, our hope… go back to 0.
DIPG (Difuse Intrinsic Pontine Glioma) is a rare high grade glioma and is most common in elementary school-aged children, but it can affect children of any age. DIPG is always found in the brainstem. This part of the brain controls many basic functions like breathing and swallowing, as well as muscles that help with speech and eye movements.
About 250 kids in the U.S. are diagnosed with DIPG each year. I pray for my child and I pray that no parent ever again has to be told that their child has this! This was originally being labelled as SophiE’s quest for my daughters anonymity. Sophie is my daughters puppy and the capitalized S and E stood for Sarah Elizabeth but we are no longer in the position to stay in the shadows. Thank you for reading about our little girl and thank you for any way that you can help her.