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