Featured

What Next: How my son’s cancer diagnosis changed our lives

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, “life will never be the same”. Because there has never been anyone like you… ever in the world.

— Nancy Tillman

October 9, 2018 will forever be etched in my mind as one of the worst days of my life. I say one, because there are days that follow that are equally as bad, if not worse. And lets be honest, I am still young, I still have a lot of life to live, which means a lot of hard days to come. Don’t get me wrong, there is a lot I am grateful for, and there are a lot of great days wedged in between those bad ones. But for me, October 9th, is one for the books. Before I get started, I just want to say that I know there are many out there who have experienced much worse than the journey I’m about to take you on. Everything we experience in life is all about perspective, you can really only compare the things you are going through with the things you have overcome. No two journeys are ever the same, even if both experiences share a lot of similarities. We all process things differently, we cope differently, and we move forward at different paces. So here we go..

October 9th 2018… I woke up knowing very well that today will be a bad day, because just a week before this day I had found what all parents dread, a mass in my then 5 month old’s abdomen. At first, I will be honest, I wasn’t sure what I was feeling, my mind wouldn’t accept that my son had a tumor growing in his tiny little stomach. I made tons of excuses, and second guessed myself a lot because lets be real, it is near impossible to do a thorough abdominal exam on a squirmy baby, who guards their abdomen at the slightest touch. And even if you are skilled enough to do a thorough exam, no ones’ first thought is my child has cancer. I spoke to my sister that day, and she gave me advice that any good sister would give.. I’m sure its nothing, but if you are worried you should go and get him checked out. I will shamelessly admit I still waited a few days. I had Sawyer’s 6 month appointment coming up, so I contemplated.. do I just wait for that appointment or do I go to the hospital? I was afraid to go to the hospital, I didn’t want to be that crazy mom who feels “a mass in her son’s abdomen.” But looking back, my fears were soooo silly. No one should ever fear this, if you are concerned about your child, regardless of what it is you should feel safe enough to take them to the doctor. I of all people should know better. So I muscled up the strength to finally take him…

October 9th, I went to a walk in clinic near my house, I was there at 8 am sharp, soon as they opened the door. Sawyer was their first patient. They saw him immediately and as I explained to them why I was there, I started to cry. I was so scared. I didn’t want to hear what was coming next. The doctor was great, he didn’t once make me feel crazy. He looked me in the eyes, and said I feel what you are feeling. That’s all the reassurance I needed. I was doing the right thing. They booked Sawyer for an emergent ultrasound. We had a two hour window before his appointment, I used that time to regroup…you got this momma.

You’re probably all wondering where is dad. I should mention, my husband was out of town for work, he left the day before all of this. I feel stupid now, but before he left he asked if he should stay. He knew I never worried too much about people’s health unless they were on life support in the ICU (this probably stems from all my years working in ICU), so for him to see me worried concerned him… he knew something was up. But a part of me still wanted to protect him, a part of me wanted to down play what was going on. Looking back, maybe this was really me protecting myself, because if I told him to stay, than I myself would have to accept that something was not right, and I wasn’t ready for that.

We head to Sawyer’s outpatient ultrasound, and I will forever remember the technician’s facial expression as she gently placed the probe on Sawyer’s belly. Her jaw dropped, I looked at her and then looked at the screen.. the mass was bigger than I thought. I immediately started to cry. I hated myself for waiting this long. How stupid was I, a nurse practitioner who finds a mass in her son’s abdomen and waits a week to be seen. I felt ashamed. Having now reflected on all the what ifs and all my regrets, I can only tell myself that I am human. We have all made mistakes, we will all have regrets in life. I cannot put blame on myself, I just need to be thankful I found it and I brought him in.

After she completed her exam, she told me to wait a few minutes as she reviewed the images with the radiologist. Maybe it’s just me, but this can either be good or bad. I usually see it as bad thing, I take it as.. I see something but want to make sure I got it all…regardless of what it means, she came back a few minutes later, and we were free to go. On our drive home, which is literally only 15 minutes, I got a phone call from the physician from the doctors office who tells me the radiologist has contacted him. “There’s a very sizeable mass in Sawyers abdomen, and he recommends we drive straight to the Children’s Emergency Department.” I break down… this cannot be happening.

Thankfully we made it to the Children’s safely, I am not sure how in my frantic state, but must have been someone watching over us that day. I made several phone calls on the way (through Bluetooth of course) many of which were to my husband who I could not reach and a few to my in laws, who I am so blessed to have. After a few back to back calls, my father in law answered the phone, he knew something bad was happening and he immediately drove to my mother in laws work. She left work right away and started her long 7 hour drive to Calgary. I than called a friend, who I had plans with that day, she has a baby who is similar age to Sawyer. She was able to meet me at the hospital thanks to her brother who came to watch her daughter. And lastly, I called my best friend who is like a sister to me. She left her work immediately to meet me at the hospital… I don’t think I ever thanked all the people who dropped everything for me and Sawyer that day. Words alone can never express how grateful I am. I couldn’t have done it without them.

So here we are at the Children’s Hospital for what seems like hours. Sawyer has been poked several times for an IV site and blood work. After finally obtaining IV access, everyone is traumatized and in need of some rest. We see multiple people from general surgery, to oncology. Its been a long day, Sawyer has hardly slept with so many interruptions, and I’m emotionally exhausted. I’m sure the doctors could sense it, if not see it in our eyes. Its been a tough day. Since nothing at this point was urgent, they let us go home. We were to come back tomorrow for a CT scan and a formal sit down with the oncology team to discuss what this mass could be. Tomorrow is another day, to think we thought things couldn’t get worse….

Tests… tests… and more tests

And so it begins, the series of tests that seem like such a blur now. As I said before, the first test began on October 9th. Sawyer’s ultrasound was immediately followed by a cat scan October 10th that showed a significant mass in Sawyer’s abdomen. This mass measured 12 x 8.5 x 9 cm!!!!!! How?? How is there a mass so large in such a tiny human. And to think in the days to come it would get bigger. Since this large, let’s call it pelvic floor mass, occupied a majority of Sawyer’s abdomen they could not determine its origin. So we are left with a lot of unanswered questions, where is this mass coming from, and what exactly is it.

We were given a differential diagnosis, with three options as to what it could be… a non cancerous teratoma or a cancerous tumor, more specifically neuroblastoma or rhabdomyosarcoma. I remember thinking, I don’t like any of these options. In fact, I may even prefer a cancerous option at this point, because surgically removing a tumor this large in such a tiny human is very scary, there are so many surgical risks. But, with that being said do I really want my child to have cancer. After hearing our options, Kaylen (yes Kaylen was able to catch a flight back home to be there with me) and I broke down in the pediatric oncology clinic. Before all this, I could count on one hand the times I have seen my husband cry. He has always been my rock, so solid, so level headed. To watch him cry broke me. I never felt so much pain.. so much heartache. I cry even as I write this. It brings back so many awful memories, so much raw emotion. I still remember the nurses shuffling as in to a private area so we didn’t have to cry in the waiting area. They handed us drinks, tissues, gave us warm hugs, and even stole Sawyer for some snuggles. They hugged him hard that day, and I will never forget the love they shared. They were invested in our family, and you could see that they were hurting that day just as much as we were, because no family, no child and no baby for that matter should have to deal with this.

To determine what we were up against, Sawyer had to undergo a few more tests. One test in particular was to see how this tumor was impacting Sawyer hemodynamically and how it was effecting the blood flow to his organs, in particular his kidneys which both showed severe hydronephrosis on imaging. We met with urology who recommended a nuclear scan of Sawyer’s kidneys, if the results came back promising Sawyer wouldn’t need nephrostomy tubes. Thankfully the nuclear scanned showed the kidneys were functioning well. YAY one small win. Next test was another ultrasound. During Sawyer’s intake, I had mentioned to the physicians that he had recently started to sit, and during a diaper change one day I had noticed his lower extremities were mottling. I even showed them pictures I took. I knew at the time that something wasn’t right, but I didn’t think, hey my child must have a giant tumor in his abdomen compressing on his vasculature and compromising his circulation. It all made sense in hindsight. So before Sawyer could have a biopsy and undergo general anesthesia they needed to quantify with an ultrasonic doppler how much of his vasculature was being compromised. After another test we were told that the mass was compressing against his IVC and his descending aorta but he still had adequate blood flow to his lower extremities and to his vital organs. With these results, we met with the ICU team who felt it was safe enough to proceed and that they would be on standby in the event that the core biopsy (his next test) went south.

Friday October 12th, just 3 days after all this began, Sawyer gets wheeled into the operating room for his core biopsy. I sang him a song before he drifted off to sleep…. “zoom, zoom, were going to the moon, zoom, zoom, were going to the moon… if you want to take a trip climb aboard my rocket ship… zoom zoom” I fumbled the words, I was so nervous to leave my baby, but without hesitation the OR team started to sing with me. Thank you so much… I needed this. After just a few short hours, Sawyer came out of the OR… he did it. He is such a brave boy. We spent the night at the hospital to ensure Sawyer recovered well after his big day and the next day we were discharged to wait for the results…. we were told it would take at least a week for histopathology results.

October 16th, only 4 days later, I get the call no parent ever wants to get… we have the results from Sawyer’s core biopsy, he has rhabdomyosarcoma.. he has cancer. Why??? Why is this happening. Everything becomes a blur. We go into clinic where Sawyer’s plan is laid out. Since Sawyers tumor had already grown (once measuring just below his umbilical area, now measuring just below his xyphoid process), we needed to act fast. Though we knew Sawyer had rhabdomyosarcoma, we were not privy to the severity of his disease (and by severity, I mean staging). Unfortunately, we had to wait for final pathology reports, a PET scan, and a bone marrow biopsy to rule out metastatic disease. But, we weren’t going to wait to find out. Friday October 19th, Sawyer had another big day. He was brought back to the OR for a bone marrow biopsy and central line insertion. That night he would receive his first round of chemotherapy… vincristine, dactinomycin, and cyclophosphamide. Ten days later he would have his PET scan. After October 29th, we learned that Sawyer had intermediate FOXO negative rhabdomyosarcoma. He did not have metastatic disease, but because of the size of his tumor and the inability to surgically remove it, he was deemed intermediate risk. Our plan was to complete 43 weeks of intensive chemotherapy, he would have repeat imaging at week 9 for possible surgical resection. Following surgical resection, he would have radiation, and after completing 43 weeks of intensive chemotherapy, he would do an additional 6 month of maintenance chemotherapy.

I couldn’t believe how much one tiny body had to go through to hopefully one day be cured of cancer. It seemed all so overwhelming, the number of drugs, the number of treatments he had to endure, all to have another chance at life. Statistics say that patients with intermediate risk rhabdomyosarcoma would have an approximate 5 year survival rate of 70% if they complete the above treatment regime. More recent studies out of Europe have shown that by adding an additional 6 month of maintenance chemotherapy this number increased by 13%. It seemed like a no brainer. We wanted to increase the odds of Sawyer surviving this. But all these treatments would come with a cost, short term and long term side effects, all of which included sterility, secondary cancers, delays in development both physically and mentally, pain, nausea, vomiting, diarrhea, peripheral neuropathies….the list goes on. Some side effects were considered temporary and would dissipate after treatment ended, some were more permanent, and some we would have to watch and wait to see if they occurred. Who knew that being treated for cancer, would increase your likelihood of getting other cancers – for every year that passed Sawyers risk of getting another cancer would increase by 1% per year, until that risk plateaued at about 40%. So if going through this once wasn’t enough, your telling me we might have to do it again.

Since radiation increases ones risk of secondary cancer, it was important for the team to ensure that Sawyer did not have a genetic abnormality that would already increase his cancer risk. We saw a geneticist right away who took samples of Sawyer’s blood. One hereditary disorder that she was most concerned with was Li-Fraumeni Syndrome, a syndrome that predisposes carriers to cancer development. Fortunately, Sawyer did not have this cancerous trait, which is great news to hear, but also left us with a lot of questions of why.. why did this happen to him… I guess we will never know. So here we go, let the treatment plan begin

Who am I ?

For most of you reading this, you probably already know me as Ashley Velting, formerly Ashley Altenbeck. I grew up in a small community in northern Ontario. Moved from my small town in 2005 to Queens University were I did my nursing degree. Fell in love in 2009 and moved out West to Alberta. Fast forward a few years, to 2018, when my life changed forever. April 14, 2018 to be exact, my husband and I introduced a beautiful baby boy named Sawyer James Velting. Everything about him was perfect, or at least that’s what we thought. He did everything a baby should do … ate and slept ( but let’s be real, hardly slept haha). It wasn’t until October 2018, 5 months after his birth, that our once healthy baby was diagnosed with Cancer.

At the beginning of his diagnosis, I could hardly stand the word CANCER. My husband and I often refused to say it, because saying it out loud made this nightmare a reality. So I will admit, we hardly talked about “it”.

So why now? Why talk about our lives in such a public forum? Well, for one I realized I needed to heal and to heal I needed to talk about “it”, our current struggles, and our new life. Maybe writing things down will help, maybe it won’t. One will never know, but it’s a start. And maybe this will help others who have struggled through this, because let’s be real, we are not the only ones hurting. Sawyer’s cancer diagnosis has impacted our family, friends, and community. We are all hurting together.

So what am I hoping to achieve through this blog .. well I am hoping that through my words we can all heal together. Because let’s be real… I need to off load some heavy shit… some dark days and some hard times. So if you’re interested in learning more about what’s been going on or want to better understand my son’s journey through his momma’s eyes please feel free to read my posts. Xo