Honored Kid

Justin S.

Age 13
Justin S. Kid Photo

Location

Redlands, CA, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

January 2015

Status

In treatment

Treated At

Loma Linda University

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My Story

I always said my children would be healthy and that "Cancer" happens to "Others" ..not to me or my family. The dreaded words you never want to hear especially about your children is that they have Cancer but even worse is how rare my son's diagnosis is! He was diagnosed Jan. 27th 2015 with DIPG (Diffuse Intrinsic Pontine Glioma) Grade 4, one of the rarest, inoperable brain tumors located in the brain stem. There are only about 200 new diagnoses per year and no cure or treatment that would give a better prognosis of a few months to a couple of years to live after diagnosis.Shock, denial and anger are the first few emotions I remember experiencing when learning my son, Justin's diagnosis recently. I will give you a brief background of our family and timeline so you can understand where we come from and how this has affected us. We are a military family as my husband has been in the Air Force for 22 years, and I am an Air Force Vet, having served 8 years prior to having children. In 2004, I gave birth to my beautiful daughter Jessica, while stationed in North Carolina, now 10.5 years old. I became a stay at home mother and enjoyed every minute of Motherhood! While stationed in South Dakota, I became pregnant with my son, Justin and he was born the day after 4th July at 9.5lbs! He was a huge, healthy & happy boy that made me happy to be a mommy for the second time. He was always smiling and happy, healthy, and VERY active! :) He and his sister got along great and Jessica enjoyed helping with Justin as his big sister.  I envisioned what it would be like when they were both adults and the type of people they would grow into.  Justin and Jessica were both in Gymnastics, swimming, and everything you can think of without ever hardly getting sick! I took pride in the fact that my children were so healthy and amazing and it wasn't until our recent move to Singapore that this all changed without warning.We were fortunate to move from South Dakota, where the temps were frigid and blizzards very common. We learned we were moving to Hawaii after 3 years in South Dakota.We happily moved to Hawaii and experience some of the most beautiful weather, places, and memories with our family. We took the kids swimming, horse back riding, helicopter rides, swimming with the dolphins, snorkeling, hiking, you name it! We loved adventure and wanted to enjoy new experiences as a family. The 3.5 years seemed to fly by and then my husband had been given the opportunity to take on a teaching position with much better hours and job satisfaction in Singapore. We were hesitant to travel even further from family but saw this as an opportunity to have more family time and being one of the last tours before my husband retired. We packed up everything right around Thanksgiving 2014 and headed for Singapore! We experienced Christmas there and were just getting into our house, buying a car, and getting my daughter set up in school to complete 4th Grade while registering Justin for Kindergarten!The schools there were amazing and my daughter was excited after making friends and starting to take foreign languages with their impressive curriculum. We just moved into our house for a couple weeks after the New Year, and awaiting household goods to arrive when my husband had an accident at work and fractured his ankle. We got him a half cast and crutches and began to help him recover while I kept the kids busy with swimming, zoo trips, and exploring Singapore:)The next couple of weeks events were going to altar our lives forever! Justin's symptoms first began right after my birthday around 13th January my husband and I noticed he was having "clumsy" accidents such as walking into a door knob, or tripping over his feet while we would be taking walks, etc. Within a week of this, we were watching T.V. and saw Justin covering his left eye while watching a show and we asked why he was doing that. He said he saw 2 T.V.'s and we assumed he may need glasses as he strained to see the T.V. and maybe that was why he was having clumsy accidents. I made an Optometry appt. which was 2 days later for the first available appt. Within a day or so, his left eye also looked "lazy" and stuck when he would look around, his left eye didn't follow. He also began to get dizzy at times and starting walking or leaning to the right a bit. We then took him to his Optometry appt prepared that he would be getting eyeglasses and figuring out which color frames would look best on him. We were surprised to learn that he had 20/20 vision! He only saw "double" on the test when they showed the color dots, he saw 6 instead of the 3 that were actually there.  Optometry immediately referred us to Neurology for an MRI after checking his eyes thoroughly to rule out stigmatism, etc. We were scheduled for the MRI of his head that same evening as his Optometry appt. so we prepared and came right back that evening to see what we could figure out.   Justin's dizziness had actually progressed that day to the point we had to hold his hand walking or he was fall down as he was unbalanced and could not stand or walk unassisted.  We were called back into the Doctor's office as the results had come in from his MRI scan. We both sat down to hear the results and when the Doctor pulled up his scan, I saw what made my heart sink and body freeze in terror. I could see a large white mass in the center of the MRI scan and realized this was more than his vision we needed to be worried about. The Doctor explained that his MRI displayed a 3cm diffused tumor, intertwining with is healthy brain tissues, making this tumor inoperable. The Doctors believed it grew quickly over a very short time to have such sudden symptoms as well as the size of the tumor. The tumor was putting pressure on the 4 & 6th nerve & which is why we saw his vision and balance affected so rapidly. The tumor size became large enough to block any regular drainage that normally occurs in the brain stem, causing swelling, and pressures to rise inside of his head.  He was admitted into the hospital the same day and observed for 2 days while being put on steroids to control the pressures, fluid inflammation, and determine the recommended treatment plan. We were told radiation and chemo is the standard of care and without being able to remove the tumor made his chances of survival about 10% and 1-3 years to live. Needless to say, we broke down unable to accept this diagnosis and at a loss of what to do next. We scrambled to collect ourselves and remain calm, positive, while yet trying to find out as fast as possible any new, experimental or alternative options for him. We realized the side effects of conventional therapy were great and the outcome was the same.Our first move was to decide whether to stay in Singapore for treatment knowing we only had a 3 year assignment or move back to the states permanently. It was clear that we didn't want to be traveling or compromise his chances of success if we had to travel so we decided to leave Singapore and get a second opinion, while researching our options for his treatment. My husband could not just fly out as he had to get approval to move his current base assignment at Singapore to the states where we could also be closer to family/support system in Ohio. I then flew with my son along 30 hours back to the states while my husband worked the military re-assignment and my daughter stayed with him. We also didn't tell my daughter everything as we didn't want to overwhelm her knowing the short notice move after just arriving to Singapore would be enough for her to deal with at the time. We explained to her that her brother was not well and he needed more treatment than glasses to fix what was wrong in his head. After arriving in Ohio's Childcare center in Cincinnati, I learned of their Clinical Trials offered for Justin's diagnosis but was not able to accept the high risks and side effects that came along with those treatment options. I had to weigh the quality of life for a 5 year old battling strong drugs with heavy side effects enough to keep him bed ridden or worse while not having any data to show it would improve his symptoms or outcome. My husband and I decided not to opt for conventional radiation as we learned of a newer, with less side effects Proton radiation treatment which allowed more precise delivery of proton beams and less damage to surrounding healthy tissues in the brain.  Once we finally got settled in California, we began to get his pre-planning done so that he could begin treatment asap.He is currently in week 2 of his Proton treatments and has approximately 4 weeks left and then we will travel back to Ohio for maintenance and follow up care. I will also be researching alternative, holistic, and experimental trials to help treat Justin and continue on fighting!Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.

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