Low Triplets’ Story

Posted on 2016-04-13

This story was originally published on the Low Family blog, and has been reposted here with family permission. Browsing the news headlines, one catches your eye – ‘TRIPLETS WITH RARE EYE CANCER’ You read the heart wrenching story and follow a link to a family blog.  …and here we are…  Never did we think our humble family blog would become a blog people besides relatives would find interesting.  Prior to the triplets and cancer, I assume we were a family a lot like yours! I (Leslie) grew up in Utah, the youngest of 8 children. Richard grew up in Alberta, the 4th of 8 children. Rich and I met while both attending BYU in Provo, Utah. In 2008 we were married in Salt Lake City, Utah. Soon after we were married, we moved to Edmonton, Alberta for Richard to attend medical school. In October 2011, we welcomed a sweet baby boy, Benson, into the family. Spring of 2013 we were expecting baby #2.  I kept commenting to my family that this pregnancy felt different – I was feeling really big.  Having 6 sisters that had all been through childbirth and pregnancy, they all assured me  this was normal – you show sooner during your second pregnancy than your first. (ha!) In August I was scheduled for my 19 week ultrasound, which would be the ultrasound to determine the sex of our baby.  Richard joined me for the visit, as we were excited to find out if we’d be welcoming a boy or girl.  Once there, the tech explained  she would do the scan and then show us the baby, so she turned the screen away from our view to do her work.  After she began imaging she casually asked, “Now, was this pregnancy natural or were you on fertility treatments?”  We replied, “Natural.”  She made it sound so casual we didn’t think anything of it!  After almost 2 hours of imaging, we were curious what was up.  She kept assuring us that everything was fine, but having been through ultrasounds with Benson, I knew this was not ‘normal.’ After returning from using the restroom, a few more doctors had gathered in the imaging room.  They informed us that we were having multiples.  And not twins, triplets.  Not only that, we were expecting all boys! We were shocked (understatement).  Richard was grinning ear to ear, ecstatic about 3 more boys.  I mumbled something about how I require a lot of sleep… The fun began of letting family and friends know the unbelievable news – we were expecting triplets! Of course, with this overwhelming joy also came worry.  Everything we read suggested there would be complications.  Whether it was premature birth, low birth weight, twin to twin transfusion, preeclampsia, stillbirth, etc, we were prepared to handle some sort of obstacle.  We tried to remain positive, yet were very aware of the possible complications that accompany triplets.  From the beginning I truly felt that Heavenly Father had a purpose for these boys. By 24 weeks I was put on bedrest.  The support of family and friends started pouring in.  Benson wasn’t even quite 2 at this point. The C-section date was scheduled for December 5, and I think everyone (including me) was a little surprised my body made it that long!  The human body is amazing The morning of December 5, I was able to walk myself into the operating room to deliver these beautiful baby boys.  After months of bedrest, worry, many prayers, and being the recipient of so much service from others – with no complications, the babies were born very healthy. Thomas weighing 4 lbs. 9 oz Mason 3 lbs. 11 oz  and Luke at 4 lbs. 6 oz None of the boys even had to go on oxygen.  They were in the nicu for a few weeks, but overall, they were extremely healthy.  We felt so blessed.  Our prayers had been answered – the triplets had arrived safely. Once they were all born it was obvious they were related, as they looked a lot alike! Because they had separate placentas, only a DNA test could confirm if they were identical or not. Two months went by… The boys, especially Mason and Luke, looked so much alike!  Richard started looking for distinguishing marks to tell the triplets apart.  About this time, their eyes began lightening from that ‘dark baby eyes’, into their blue color. Rich noticed Mason had a coloboma – a tear shaped pupil.  A coloboma isn’t anything to be too alarmed about, a lot of people have them.  Erring on the side of caution, Richard called a friend that’s an eye doctor.  He suggested Richard take a picture of Mason, using a flash on the camera to show the red eye.  (We later learned what a tender mercy this was, that Richard decided to investigate and that his friend suggested a red eye test.) The white, glowing pupil in Mason’s left eye was of concern.  Trying to not overreact, we scheduled an appointment for the next day for Mason.  The doctor discovered Mason had a large tumor blocking most of his central vision.  Likely a cancer known as Retinoblastoma. After Mason’s diagnosis, it was decided that all of the boys (including Benson) should be checked for tumors, as Retinoblastoma can be hereditary. Unbelievably, our grief multiplied as we learned all of the triplets had visible tumors. The shock of expecting triplets didn’t even compare to the horrific shocking news that all 3 of the triplets had eye cancer.  From this exam, it was discovered that Thomas and Mason had the most serious cases.  All the boys were referred to a specialist and the severity of the situation was made very real to us.  We were told it was likely that the boys may need to have an eye removed, to keep the cancer from spreading. Retinoblastoma is a rare eye cancer.  The specialist we needed to see for treatment wasn’t within close proximity.  We learned we would need to travel 4 hours by airplane, every few weeks, for treatment in Toronto at Sick Kids Hospital.  Flying with triplets was another difficult challenge to overcome.  There are only 30 new cases a year of RB in Canada.  Being the parents to 3 of those 30 was not the statistic we wanted to be. I flew one of my sisters up to take some pictures of the boys before they began treatment.  They looked perfectly healthy and normal – beautiful!  You’d never know they were fighting cancer at this time. The next week, on the boys 3 month birthday, March 5, they had their first visit in Toronto with Dr. Gallie. Thomas’ right eye and tumor were a “D” grade – quite severe.  In that his left eye was in very good condition it was suggested that we remove his right eye.  While this was a heartbreaking decision to make (especially so soon after diagnosis), we chose to remove the eye and focus on his healthy remaining eye rather than risk harming his organs with chemo drugs.  He weighed less than 10 lbs. so the chemo would have been very hard on his little body.  And with the placement of his tumor, he had very little central vision in the right eye anyway. Two days after his initial appointment, Thomas had his right eye enucleated. At our first appointment, Mason had a similar situation to Thomas. His left eye was determined to be a “C” grade. They treated the tumor with chemo injections into the eye for a few months. However, the tumor did not respond as well as hoped. We had to make the decision to remove the eye or begin systemic chemotherapy. Because his right eye was very good initially, we chose to remove the left eye rather than put his body through systemic chemo.  After seeing how well Thomas had adapted, we knew the loss of an eye was not the end of the world. It is simply a cosmetic blemish.  Mason had his left eye enucleated May 1, 2014. At the initial visit in March, Luke had 10 tumors dispersed throughout both of his eyes.  Fortunately, most of these tumors were smaller and in the periphery.  His tumors were initially treated with lasers.  His left eye was a little more severe than his right. After a few months of treatments, the largest tumor in his left eye began to ‘seed’ (basically, the tumor exploded.)  His left eye and seeding needed to be treated with chemo injections into the eye to prevent the cancer from spreading to his brain or other areas. During the procedure, there was a complication and some chemo drugs got into the vitreous area of his eye (the inside of the eye where all the fluid is).  Over the course of 2 weeks this chemo ended up detaching his retina. The dr.’s performed a vitrectomy to remove the fluid in his eye and reattach the retina in hopes to save his eye.  Unfortunately, Luke’s vision never returned to this eye.  Luke had his left eye removed Dec 2014, a few days before his first birthday.  We felt and were advised that there is no point keeping a blind eye that is still growing, and therefore still producing retinoblastoma tumors. The boys need regular exams to keep on top of the tumors.  In the beginning it was every 3 weeks, now that they are older, appointments are stretching out to about every 6 weeks.  This will be a lifelong battle, but one we are determined to win. Dealing with cancer x3 has been difficult, but we feel like we’ve been blessed beyond measure.  So many generous and loving people have gone out of their way to help encourage us on this journey. We feel so blessed that each of the boys has one good eye to experience the beautiful world around them.  They are sweet, happy, beautiful boys.  And let’s not forget Benson in this whole journey.  He’s been such a trooper.  He’s a pretty special kid to put up with so much chaos and take it all in stride. There are days of sadness, and anxiety, but most of our days are filled with happiness, joy, regular life, and humor. This experience has helped us remember that life is precious.  We are determined to find joy in our journey and not take a single day for granted. As a side note – Since I am busy being a cancer fighting mom of 4, and Richard is busy with his medical residency and being super dad, I often have my sister update the blog for us.  That’s why you’ll see posts from “emily”.