A handful in my walk

Back in April 2014 (21 months), he wasn’t acting himself. He’d lay around and just not play like a 21 month old. After many visits to our local er, after 3 weekends in a row, I’d had enough. I love my children’s pediatrics, but as a mother’s gut, I knew something wasn’t right. So my husband and I thought Jason had severe allergies, because of his father. We then set an appt for an allergist at a.i. DuPont Hospital for children in Wilmington DE. It was our first time ever being there, and the staff became like a family. After the back scratch allergies test, it’d been negative. Blood work showed negative for lymes disease. So we then had our second appt with diagnostics. Jason was being sensitive to light and vomiting every now and then. Dr then linked him to migraines. With being on cyproheptadine for 3 weeks, still same problem. We then we’re being sent for MRI of brain to rule out a tumor July 25, 2014.

There had been a glitch in the MRI machine, so they had to restart. 3 hrs had gone by, and we were finally able to see our son. After sitting with our son while he was waking, a dr came in and says “we found out what’s wrong with your son.” My husband and I say. “Ok. And what’d that be?” He brought a chair beside us and said “your son has a brain tumor, about the size of a golf ball. Possibly a craniopharngioma.” My heart just fell to the ground and said “are you sure u have the right Child?”

Well, surgery was set for Monday, July 28th. The tumor was successfully resected from his Pituitary Gland. ALL of the gland was removed. 6 1/2 hr surgery. This had been the day our lives changed forever. Jason was in PICU for 2 weeks after surgery. I’ve never in my life seen and met so many different doctors in my life in one room. 4 days after surgery, he had slipped into a medicated coma. 2 days later he had woken. With not having the pituitary gland, drs needed to check sodium levels every 2 hrs to maintain a safe zone for him. He did slip in sodium and was drooling. But it was brought back up.

We then, had went to “step down icu ” to get ready to go home after 2 weeks in PICU. That’s when I had learned how to administer my son’s medicine to him daily and get the correct dosage the Dr needed him on.

We had an appointment with genetics, and discovered my son was born with this tumor. But showed no signs until 20 months or so.

In Sept 2014 we had an appt with hem/Onc. We found our son was diagnosed with a malignant tumor called PITUITARY BLASTOMA. Only 4-6 confirmed cases worldwide!! We did agree to do chemo, but drs wanted to hold off until til signs of tumor showed in mri. He also has lung blebs (cysts) on his lungs and chest wall. We only do ct scans 1x yr to see how they are due to radiation. He also has dicer 1 syndrome from the tumor.

Since pituitary removal, hes been diagnosed with adrenal insufficiency, hypothyroidism, diabetes insipidus.
6 months after surgery Feb 2015, we woken up to our son in a full blown seizure. Tonic Clonic. I hope I never see that again. I felt helpless for my son. I couldn’t dial 911 fast enough. We then we’re on seizure meds. He’s been seizure free since. (Fingers crossed) unfortunately, due to an abnormal eeg, he must remain on seizure meds. Although no sign of seizures visually.

Jason was diagnosed with growth hormone deficiency May 15. He is on Humatrope .5 mg daily. Our next trip to DuPont will be Nov for multiple appts, 2 different days.

Today, my handsome feller is doing well. He’ll be 5 yrs old Sept 20 and going into kindergarten. He absolutely loves mickey mouse and firetrucks. We had an MRI on Thursday July 10 and showed no signs of reoccurring tumor. We’ve graduated to 1 mri a year instead of 4 per year!