On Oct. 31, 2014 Jibril was diagnosed with Diffused Intrinsic Pontine Glioma -aka- DIPG. It’s a form a brain cancer formed inside the brainstem within the pons region and it strikes at the heart of childhood (5-10yrs of age). DIPG is a rare disease and less than 10% of children live past 18 months from the time of the initial diagnosis and survival rates are less than that. In short summary, there’s no cure. Jibril received radiation therapy (administered in 30 sessions over a 6 week timespan) with a goal of improving his quality of life and alleviating some of the symptoms. Depending on his outcomes with this therapy, I will revisit adjunctive therapies and clinical trials.
As a mother, no words can describe the pain of uncertainty, but I accept God’s decree. I decided from the moment I was told to be positive, strong and supportive for my son. I do not intend on putting him through unnecessary invasive procedures nor will I ever tell him he’s serving a death sentence. My goal is to reassure him of my love and to make certain he’s comfortable and happy. I have no choice but to be realistic. I put my trust in God and those amongst his healthcare team.
Since the diagnosis I’ve gotten a lot of questions from loved ones about second opinions and the what if’s. This part requires deep breathing it’s the hope all parents hope for. As a healthcare provider, I read avidly and after working every zone of the hospital it assures exposure to the very sad parts of healthcare that aren’t forgettable. I remember not wanting to go back to the Bone Marrow Transplant Unit because of the degree of sadness I felt knowing that there was no certainty in the expected outcomes for so many people. If you know me, you’ll know I don’t favor gray areas. I’d always opt for a clear, concise, and safe path with a high degree of reassurance. That’s never life in the real world so here I am again on the same kind of unit supporting my own son. God has a way of preparing us for the unexpected so I’ll remember the support I gave, the truths, and experiences I took home every time my shift was done.
As anyone could imagine, making quick critical decisions at this time is difficult but I’m still honored to be his mother and very grateful for everything. I can’t thank God enough for directing my career in the direction of healthcare. Understanding the scientific lingo makes things about 5% easier. Some % is better than none.
On December 23, 2014, Jibril completed his radiation therapy. In February 2015, Jibril was sent home on hospice. Jibril is a warrior and he is giving DIPG a run for its money. His walking is difficult and his speech is definitely affected, but he’s still hanging in there. Jibril has created some wonderful memories on his journey. I am exhausted, but he’s worth every strain and if need be I’ll do it all over again . . . in the meantime, I’ll keep praying for a miracle. God knows he deserves it.
Rasheta (Jibril’s Mom)
Learn more about Jibril at: https://www.facebook.com/updatesonjibril.