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June 26th: Our journey here began early in June 2018 when Rhys developed a lump on his leg and a limp. Being a rambunctious kiddo, we thought he had hurt himself, as he often had before. The limp did not improve over the course of a week or so, and we decided to see his doctor. On June 14th, we saw his primary doctor who referred him to an orthopedist right away, as he was concerned about the limp and lump. On the 15th we saw the orthopedist who took x-rays (Rhys was thrilled to see his own bones) and found only a tiny irregularity on his right femur. He referred us to get an MRI. As the 15th was a Friday, we were scheduled for an MRI on Monday morning. Before we could make it to Monday, Rhys's right leg broke; the bone broke right in half on Sunday afternoon, June 17th. Seth came home from a Father's Day bike ride (preparing for the PMC in August) to an ambulance and a screaming kiddo. We had him taken to Hasbro's Children's Hospital in Providence, RI. Monday the 18th Rhys finally got his MRI and it started us on a terrifying path...the results appeared consistent with Ewing's sarcoma, a type of bone cancer.
Anything you can imagine that we felt, we felt. Numb, scared, horrified, confused...mostly overwhelmed and devestated. So not only did our sweet vibrant son have a very badly broken leg, he had bone cancer. They couldn't cast his leg because they needed to keep the tumor site available, and they couldn't fix it surgically because it could risk agitating the tumor and encourage it to spread (metastisize). They decided to put him in traction. They put a pin in his tibia and attached 10 lbs. of weight to this, which is hung over the end of his bed, the point being to pull and hold his bones in the right position and allow the muscles to relax and stop yanking on broken bone ends. It works. His pain lessened considerably once this was done on Tuesday, the 19th. At the same time, they took biopsies of the tumor in his leg and the bone. Preliminary results were again consistent with Ewings sarcoma.
He had a catscan the next day, I believe, to check his lungs for any sign of metastasis to the lungs. Things looked good, the first piece of good news we had received since Sunday! His petscan, a full body scan with a tracer, happened on Friday, June 22nd (his last day of school), and that showed no sign of any spreading of the cancer, which was the best we could possibly hope for. I'm not ashamed to say I cried tears of relief at that news! They also took a bone marrow biopsy at that point to see if the cancer had gone into the marrow. At this point, we are waiting for the bone marrow biopsy results as well as the definitive DNA biopsy results to determine which specific type of Ewings he has, and to make sure the primary tumor is the only site it has reached.
The tumor caused the bone to weaken to the point where it could have broken at any time...we were days away from discovering that info when the bone gave way. They expect Rhys to be in the hospital, in traction, for about a month, at least, hoping the bone will knit enough that he can be transferred to a temporary type of cast. It's going to depend on how the bone is healing at that point. The final results from the biopsies should be complete this week, and chemotherapy will be chosen based on the results, and likely started by the end of this week as well (by June 29th). Yesterday, the 25th, he had a central line put in with a port, so they can access larger veins for the treatments.
The course of treatment is expected to look something like this: chemotherapy for a few months to shrink the tumor, then surgery to remove the tumor, and then continued chemotherapy for months afterward. They expect him to have chemo for about a year. Once the leg is healed enough to let him out of the hospital, he can come home and just go in for the treatments, which would be every two-three weeks.
Rhys is mostly good spirits and the nurses and doctors are fantastic. Rhys has a pain management team, an oncology team (of course), an orthopedic team, a child-life team (to help keep him engaged and having fun), a physical therapist, and I may have forgotten who else. The hospital is a children's hospital, and they really know how to treat and interact with kids in tough situations. They are just the best. My active little munchkin still has some hard days where just nothing is right, though, and he gets grumpy (who wouldn't?). We're managing on a day-to-day basis. Seth and I are trading off nights at the hospital, since sleep is really important right now, and sleep at the hospital is poor, to say the least. Seth's mom has been there with us at the hospital right from the beginning and has been a tremendous support as well.
This is the main story so far and I promise I will try to keep up with updates and answer questions! Those who know me know that I am not the best at communication...I'm a rather shy hermit in my natural state, but I appreciate the caring and support from all of you more than you will ever know. I will do my best to keep you all updated as we make our way down this scary path.
We are still here! Still trucking along. Rhys has been having a very hard time emotionally as clinic visits and pokes just keep coming, and the exhaustion that comes along with trying to keep up his morale is profound.
HOWEVER... We have just been admitted tonight for Rhys's final cycle of chemo!!! We should be discharged Saturday and then Rhys will be done! Done with IVs, done with nights at the hospital, done with hospital food. We'll still have regular clinic visits while his blood counts drop and then come back up again, and then repeat pet and cat scans every three months for the first year, but we are finally, finally, reaching the end of this chapter.
Rhys is doing very well with his leg, also. He's been able to sit cross legged again at long last, and although he's probably not going to make his original goal of being walking sans walker by his birthday (in one week!), he's still working hard to strengthen that leg. His knee has stiffened up a bit and he's having trouble straightening his leg, but we're slowly working on that as well.
So, those are the main points! I will try to keep you all updated a bit better as well! Huge hugs and love to all of you!