Rhys’s Story
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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. 

Newest Update

Journal entry by Barbara Connors

Hello again, after a long time again! Yet another long overdue update as we march on. Things are going well, Rhys is feeling really good and recovering beautifully, but let's see...everything in the proper order!

5-day chemo in December: Everything went as planned, munchkin was fairly bummed to be in the hospital at Christmas time, but oh my goodness the outpouring of gifts and things to do in the hospital for kids at Christmas time! It was amazing, truly, all through the generosity of different families and groups. The amazing generosity of our own family and friends was overwhelming, as well, as it came pouring in from our neighbors and her workplace, and Rhys's school also! I just don't have words enough to thank you all as much as you all deserve. Big or small, our holidays were overflowing with love and kindness from all of you. Thank you!

Christmas: As mentioned, amazing and wonderful, and holy moly the mountain of presents for Rhys! And he loved absolutely everything! Best of all, of course, we were all home for Christmas. :) That was Rhys's biggest wish, and he got it. My sister and her family came to visit as well from North Carolina and Rhys had an absolute ball with his cousins, though he was under the weather. He got a cold that hit him pretty hard, but it worried me and Seth more than him. We were so happy to see them, all the same! Rhys also reached his first post-surgery goal of walking with his walker without someone assisting his leg (to keep it from swinging too much and hurting). Big first step!

New Year: Everyone was tired but feeling good. Rhys was looking at getting back to school but feeling very intimidated by it. We've done a lot of talking and listening and working out mini-goals to work through it. One thing about Rhys...he doesn't do things half way, so trying to help him find some middle ground has always been a challenge. With a lot of work and help, he's learning to find it. A little bit. ;) 

And on into January: Rhys had a 6-week post surgery checkup that went wonderfully. His surgeon was very pleased with his healing and mobility, so she wasn't worried about adding more physical therapy yet at all. Rhys himself is a great self-motivator, and he keeps himself moving and trying all on his own as it is. She said we'll reevaluate in a few months when he's done with chemo (yes, that day is coming!). We'll start talking about lengthening the prosthesis at that point, too, but there is no hurry for that. 

Rhys did finally get back to school and it has done wonders for him. :) His new goal is to get to school at least one day a week unless we're in the hospital. I think we will be able to make it happen. A few things are combining to make it more feasible now, too. Over the last few months, Rhys's blood counts have started to take more time to come back up which has delayed the next chemo cycle. Usually it has been the red blood cells and platelets that have been lagging, not so much the white cells (which are the infection fighting cells and the ones we watch very critically when considering sending him into school where germs tend to, well, proliferate quite readily). This means that although his blood counts are too low for chemo, he still has some immune system power, so school can be a thing for him. :) 

Lately now, his platelets have been lagging further behind, which has been delaying chemo a bit more. He's also had a couple of nosebleeds that have been pretty ugly, so we just have to watch for that. Unfortunately, the last time Rhys got platelets, he started having an allergic reaction, which apparently is not terribly uncommon, so he'll need a couple medicines before he gets platelets now. The doctor said that kids can start getting sensitive to blood products over time, and will usually show a sensitivity to platelets first before being sensitive to whole blood, so we'll see how things go. I'm all the more glad to be closer to the end of this journey, though. The chemo is catching up to him, I think. We've seen it with his blood counts slowing down in recovery, and he does get very tired sometimes, too. Not often, but when he does, it's pretty noticeable.

So here we are, with only three more cycles to go! We are *all* wearing thin at this point, but we are getting closer and closer to finished and finally starting to look toward what's next. :) Getting back to some sort of "regular" again. Hugs to you all!!!
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