Rose Family Updates on Jack's Journey with Ewing's Sarcoma
Forgive the long first post. We have some catching up to do.
So this happened…
January 7, 2024
Dear Friends and Family,
As many of you have likely heard, our youngest son Jack (21yo)was diagnosed with Ewing's Sarcoma, a rare pediatric cancer, over the holidays. We feel incredibly fortunate to have caught his cancer early and are optimistic about his prognosis.
On Monday January 8, he will begin an intensive treatment program including chemotherapy, surgery and perhaps radiation. This treatment will span many months; however, our family is hopeful that this time next year we will be celebrating with a trip to New Zealand or some other wild and wonderful place (or two!). You know the 5 Lazy Roses aren't so lazy, so his orthopedic surgeon will learn a thing or two about what we mean by active. 😁
We've jumped into the deep end of the cancer pool and conducted a tremendous amount of research in a short amount of time. While this cancer is rare (representing about 1% of all childhood cancers or 200 new cases per year in North America), it is treatable. Friends and family have been generous beyond measure with connections and introductions that have accelerated our learning and improved our confidence with Jack's treatment plan. In this brief amount of time, friends new and old have gone out of their way to make important introductions, share valuable insights and offer basic tips that have dialed down the pressure on the firehose we are drinking from. You are copied here and, truly, we cannot thank you enough. Our family will pay this forward.
What are Jack's next steps?
His chemotherapy will be inpatient at Children's Medical Center in Dallas (yes, he will be one of the oldest patients there), with careful coordination between specialists at Children's Health and MDAnderson. Following the 6 rounds of chemotherapy, we expect he will undergo a significant orthopedic surgery in April-May to resect the tumor in his pelvis. Where surgery will take place is TBD, and our next focus is to identify the very best team for Jack. As soon as he can recover from surgery, he will resume chemotherapy for another 11 rounds. The treatment plan for Ewing's Sarcoma is very standardized--systemic control through chemotherapy combined with local control via surgery or radiation. While there is a plan, we all know there may be shifts in timing depending on how he responds to treatment. Flexibility is our new family motto--definitely a growth opportunity for many Roses!
A little wonderful news along the way: he was accepted into McCombs Business School on Friday🧡, and while he can't wait to get back to campus he will need to take medical leave from University of Texas until he completes treatment. Undoubtedly, this is a bummer; however, Jack is super-focused on getting through this, and it will require his (and our) undivided attention. That being said, we plan to have fun whenever we can and to find joy whenever possible--which we hope is often. We're pretty sure Jack is more nervous about being in his parents' crosshairs than he is about enduring chemo. When he feels up to it, he wants to visit Rey Rosa, play golf, see friends, get out of the house when he feels good. And we will always welcome visitors. As long as you aren't sick, sniffling or coughing--as his immune system will necessarily be seriously diminished--Jack would love to see you. Just text him or one of us to check how he's feeling before a visit.
Many of you have asked what you can do to help.
Your texts and calls of support mean the world to all of us. Please keep them coming! We know positive mindset yields positive outcomes, and that is our primary focus. We are all set on food; however, but Jack has expressly stated that chocolate chip cookies are always welcome.😉
If you are interested in additional ways to help Jack and other children with cancer:
Jack will likely require blood and platelet transfusions at some point during his treatment. Blood and platelet transfusions are critical for many cancer patients. Your blood will save lives. If you are in North Texas, Carter Bloodcare works with Children's Medical Center for blood donations. If you live further afield and are able to donate blood where you live, know that it will help someone in need close to your home.
Help other young cancer patients at Children's. More than 100 patients visit the Gill Center for Cancer and Blood Disorders as outpatients in Dallas and Plano every week for treatments. Many of these patients undergo invasive procedures such as spinal taps, bone marrow aspirates and blood draws. After completing a procedure, patients choose an item from the Gill Center prize closet. These prizes serve as important distraction and comfort items for children during their treatments. If you would like to donate to the prize closet, you can click this link and purchase items directly from the Amazon Wish List. Children's Medical Center Dallas - Child Life At check out, friends can note the item is in honor of Jack Rose in the gift message section if they like. To make a financial gift in support of the Children’s Cancer Center Prize and Toy Closet, you may donate here and note the gift is in honor of Jack Rose and designated to the Cancer Center Prize Closet (where it asks for gift designation). Children's wonderful Child Life team will make the prize purchase on your behalf for the Cancer Center.
We are hoping for smooth sailing, but prepared to brace for any storms along the way.
Jack is young, strong and positive. Charlie and Alex are rockstar big brothers. We are surrounded by YOU--friends and family near and far who have overwhelmed us with your love and support. We are exceedingly grateful and hope to see each of you over the next year to tell you in person how much we adore each of you.
In the meantime, feel free to share this email with anyone we have unintentionally omitted. The more people on Team Jack the better!!!
Big, big love,
Jack, Catherine and Will
But first, we need to backtrack:
December 17-January 7
What happened?
Jack went to a nearby Urgent Care in Dallas on December 17 feeling a “heaviness” in his pelvis. He had similar symptoms in early November when we were in Austin for Fiji Parent’s Weekend and was diagnosed with a UTI which antibiotics alleviated. These symptoms had returned and he was smart enough to seek some medical attention before we headed to Jackson later that day. He was uncomfortable enough that the urgent care dr. performed a CT scan (yes, probably in an effort to drive additional revenue to the business). It is not uncommon for Ewing’s to be misdiagnosed, so this was an extraordinary event of good fortune. The CT scan revealed something questionable (maybe on his bladder? couldn’t tell) and we immediately called our friend Dr. Ganesh Raj, a urologist, to get his opinion. Through the help of Dr. Raj and our wonderful pediatricians, Dr. Joe Peterman and Dr. Jennifer Wheeler, Jack was able to get an MRI on Monday, December 18 and we headed to Jackson that afternoon and awaited results. By the time we had landed in Jackson, Will had received a call from Dr. Raj and we had a phone consult scheduled on December 19 with Dr. Alex Callan, Orthopedic Oncologist at Children’s/UTSW. She walked Jack and us through his MRI results which had revealed a lesion on the right anterior of his pelvis with a “racketball sized”tumor adjacent to it. We were able to schedule a needle biopsy and chest CT scan for December 20 and Jack and Will left for Dallas early that morning. I was sick with worry and COVID, so stayed put in Jackson. Charlie did everything he could to look after me.
Jack was explicit in his wish to have a ”normal Christmas.” And so we did. The annual Frito Pie Fa La La continued with lots of revelry and mischief. Snowboarding everyday in spite of the dry conditions. Our traditional Christmas Eve—a delicious and beautiful dinner with our traditional stuffed beef tenderloin (butter, butter, butter!) and Julia Child’s buche de noel (if you really want to stay in the present, follow a 10 page Julia Child recipe.). Our traditional Christmas breakfast (egg sausage casserole, upside down pear gingerbread and ambrosia) followed by family ski (photo below—Jack is in red). Yankee swap on Christmas night with wonderful friends—Jack was seriously excited to emerge the victor of the lego bonsai tree and bottle of whiskey combo that was hotly traded.
December 26 we received results from the biopsy confirming Ewing’s Sarcoma. Jack and I flew back briefly to Dallas for a PET scan at UTSW on Friday January 29 and during the preceding few days calls and requests for help from close friends yielded a trip to Houston to MDAnderson scheduled for January 4 for consults with the Ewing’s team in Houston and a new PET scan there.
New Year’s Eve with the Mussafer, Davis, Emery, Nisbet, Grady clans was warm with late night revelry, games of pool, a little dancing and a few drinking games. Way too early New Years Day we headed to New Orleans for the Sugar Bowl with our family and Alex’s and Charlie’s wonderful girlfriends Bridget and Addie. Galatoire’s, Felix’s, Acme—we hit them all.
January 2, Jack, Will and I returned to Dallas and headed to Houston on January 3-4 to meet the team there and determine the best course of action and treatment for Jack. Many visits, individual phone calls, conference calls with doctors and experts over the next few days helped to solidify the plan. Hugs and delicious sushi dinner with closest pals. And we went into the weekend knowing he would begin treatment just over 3 weeks after he went to that urgent care in Dallas.
The point of this background. In the words of country music star Rodney Atkins: “If you’re going through hell, keep on going.” Seriously, our hearts were heavy and full of fear and uncertainty. But we made sure to fill our days with as many friends and family and fun as we could manage. It’s the only way to get through it. One foot in front of the other. Part of living a full life is being able to hold polar opposite emotions simultaneously. Fear and optimism; joy and sadness can exist side by side.
January 8, 2024
Friends have responded with the most encouraging, supportive and loving notes, calls and texts of support, beaucoups of lounge-ware, bountifully helpful hints and gifts,(take your own pillows to the hospital!) a bonsai tree!, and, yes, A LOT OF CHOCOLATE CHIP COOKIES. Will and I are hoping we don’t gain all of the weight he will likely lose. 😬 He is definitely keeping track of his favorites with a private rating system he refuses to divulge lest he offend any wonderful friend. Thankfully, we were able to tunnel through the wall of chocolate chip cookies in order to get to Children’s for his first inpatient treatment.
Jack was admitted for his first chemo treatment. This overnight stay will include the chemo cocktail: V (Vincristine), C (Cyclophosphomide) and D (Doxyrubicin); medicines to protect his heart and kidneys; medicines to prevent nausea and continuous fluids to keep him hydrated. Treatment in a pediatric hospital offers a few unexpected surprises…a friendly, Christmas light adorned “Tree-Rex” on the door greets us on arrival to his room, warm and friendly nurses (even though some went to OU😛), gaming stations delivered to your bedside. One of mom's number one, day one concerns was allayed when the bed was long enough for the 6’2” patient. And, thankfully, the medicines kept nausea at bay so Jack could sleep and be reasonably comfortable during this first treatment. Discharge can happen 21 or so hours after chemo is first administered so he was able to go home around 4pm on January 9.
January 9-21 Home and beyond
Jack returned home to pups eager to see him. A lot of sleeping, lego building and bonsai-tending. Exercising as much as he feels up to. He regains his strength and appetite and looks terrific. January 19 he hatches a plan to head to Rey Rosa with his roommates and fraternity brothers for the weekend. They have a GREAT time, John Trahan shot his first doe! Not too many ducks but they managed to get a few. You will have to ask the boys how and where they cleaned this deer.
This week we meet with orthopedic oncologist to learn more about the pelvic surgery to take place in April. More on that later.
January 22-26 Round 2
Back in residence for round 2. This week he will be at Children’s in puppy paradise until sometime Friday. The Ifosfamide (I) and Etoposide (E) treatment plus kidney protector and anti-nausea drugs are administered over a 5-day period. It’s a long one. I know y’all are sad to miss the terrifying Tree Rex but we think puppies are a major improvement. Even though “happy new year” is debatable.
We have, however, requested special canine care visits. If they could take his vitals that would be much preferred but not likely. 😬
Counts were great this morning (January 22) and he’s very positive and good natured. Lots of calls from ancillary services (nutrition, social work, psychology, physical therapy, etc etc) wearing a bit thin for him. At his request he really wants very few visitors. And feels strongly that he spend the night alone. Assuming the nausea is at bay and he doesn’t feel too punk I’ll cooperate. Will was already on board with that🤣.
He fills days with a lot of sleeping, gaming, answering annoying mom questions, stretching on yoga mat and even a little bike riding down the hall, facetime dinners with his brothers. Deedie and his second mommies Karen and Pilar come for a visit. He has little appetite, but no real nausea which is FANTASTIC. He can still appreciate a good breakfast taco, Sharon’s flank steak for dinner, berry smoothies from home. So that all exceeds expectations. Boring is good. We like boring stays in the hospital.
BTW, his hair started falling out on Sunday January 21, so he took matters into his own hands. Unlike Will, Jack feels confident his hair will come back. 🤣
We expect he will be discharged midday Friday. Brother Charlie coming in for a visit this weekend and that makes us all happy.
We are so glad to finally be subscribed to Substack and catch up with Jack's progress since being with all the Roses at their Frito Pie Christmas party . Amazing you all were able to endure this night and host such a fun party with very special friends. Much love and many prayers from all the Luthers from Jackson, Austin, New York, Dallas, Mississippi! 🙏🏻 💕 Homer and Pat
Jack, first of all, major congrats on McCombs and the ducks! Sending prayers to you daily and I hope to see your mom very soon.