Ryan's Rebel Alliance-Wookiee Warriors

12/02/2024

Celebrating Ryan’s second Long Term Survivor Bear.
Two years of precious life that Ryan would not have without the care of Texas Children’s! 🥰

27/07/2023

Ryan has now received two medals from ! Once during his fight, and today a scholarship recipient! Thank you for helping for always fighting for kids like Ryan and helping to make college dreams come true! 🏅

Today Ryan had a visitor representing the Snowdrop Foundation. "Snowdrop Foundation provides scholarships for college bound pediatric cancer patients and childhood cancer survivors while raising awareness and funding for continued research to cure childhood cancer." Members of this foundation race for a cure across the country. They send their medals to share with the children who are fighting cancer to let them know someone is fighting for them. Ryan was given a medal that was earned running the Rock'n'Rock half marathon in L.A. Ryan loved the description of the race and the medal, but wouldn't take it out of the bag or wear it until after the Astros won!

01/05/2023

Ryan has been working on earning scholarships all year. This one included a video of how despite treatment and hard work cancer never dimmed his smile, laugh, or ability to entertain. He is and always has been a 🤩.

09/02/2023

It has been so long since an update. Selfishly, today is the day. It is my birthday. There is no better birthday gift than this!!
Today Ryan and I met his Long Term Survior doctor! Not only did he meet his new medical team, but he was able to cross the bridge from Oncology to Hematology!
Bonus! Nurse Amy from Oncology moved. We had a moment. She recognized him, pulled his mask off, and we all celebrated how much he has grown and how healthy he is now.
Long term survivor! No better gift!
(Technically we still have some things to look out for and some difficulties/imperfections. )But we have our Ryan who has grown into an amazing person, and has goals to be a future doctor himself!

15/06/2022

It has been some time since a Ryan update, so here is the news!
Today Ryan spent the day 'sHospital.
He started the day in neuropsychology. They are continuing to monitor his brain, cognitive, and mental health due to the effects of chemotherapy and trauma from his treatment. The last evaluation produced results of continued neurological difficulties that include his hands/writing. Thank goodness for typing! Today's tests focused more on his cognitive ability. We won't get full results for a few months. All the doctor had to say is that he is very intelligent, so those results look promising. 😉
He moved on to blood work and his oncology visit in the afternoon. We love his oncologist so much! Visits are now like visiting an uncle/mentor. There are jokes, there are some serious talks, and some great advice. Ryan is now proud to be one of the boring patients!! No emergencies here! His bloodwork looked good. He always runs high in hemoglobin. (The doctor said it is either what helps him be a good swimmer or because he is a swimmer.)Either way, it is not an unhealthy level and that sounds great to us! During his water polo tournament in San Antonio, he had 5 nose bleeds in 24 hours, which sparked concern, but his platelet count is great, so no worries! Just failure to adjust to dry climate vs. the sauna that is Houston.
The neuropathy in his feet, especially his right, continue to be a challenge, but he has noticed improvement!!! He feels that he is gaining more control of it and his range of motion has increased!! He has been referred to a podiatrist for the neuropathy and callouses due to an abnormal gait.
He has grown another inch and a half this spring and put on 10 pounds of muscle! Ryan was super excited to see his hard work pay off. He is still thin for his height, but he is eating well. Believe me, our grocery bill will prove it!
I am blessed and amazed to pronounce that our Ryan is just living his best life! He is surrounded by amazing friends/family, loving success at swimming and water polo, and planning for an amazing senior year of high school. In May of 2023, he will graduate with from high school and will have also earned an Associates of Science Degree from Lone Star College. Please send him good thoughts, wishes, and prayers as he goes through the college admissions process. It is very stressful. He has high aspirations. He looks forward to pursuing a future in oncology or physical therapy, helping others become conquerors.
We will see his oncologist in 4 months and then again 4 months after that. He will also begin his journey with the Long Term Survivors group at Texas Children's. At the end of his senior year, he will be a Long Term Survivor, and we know he will live happily ever after!

14/11/2021

Ryan has fought to come back and become a varsity athlete. He is a swimmer and plays water polo.
Ryan plays goalie/in the cage/keeper.
Two seasons ago he had his chemotherapy port removed just in time for water polo season. (With his port, he was unable to participate, due to the contact and risk of injury. )
He loves the sport so much, loves his teams and teammates, and has made so much improvement. It has been a blessing and a challenge for him. Love our

21/10/2020

So, Insurance has denied this device for Ryan.

20/06/2020

Trying out some new technology today!
Chemotherapy damaged Ryan's nerves, especially in his lower right leg. When he walks he is unable to do a heel-toe motion, and lifts his foot off the ground by lifting his knee. Having foot drop, he catches his toe on the ground easily causing him to fall.
The Bioness device conducts electrical stimulation to the muscle that helps to flex Ryan's foot when it senses that he needs to during his stride. With the standard device, they were unable to stimulate the muscle to work, but that didn't stop them. They had alternative leads that could be moved to different site and stimulate more directly and strongly. It worked!!
He still has a lot of therapy to do, but we are hoping and praying that this device will help him achieve a more advanced recovery. He has considerable stretching and strengthening to do. We pray that his nerve will grow back (literally a mm a day), and when they finally do, his muscle will be strong and ready to function. Medical technology is the best! Please insurance, don't let us down! Praying that it will be covered.
So thankful for his OT and PT who have been with him since 2017, through all the tears, sickness, teenage angst, and struggles they have been by his side, always doing everything possible for his full recovery.

16/06/2020

We have always been so grateful to TCH. It is made for children. As Ryan continues to grow (yay!) he sometimes struggles to "fit in" in the child size set up. 😄
Oncology visit today for blood checks, doctor visit, and Pentamidine appointment. We had lots of conversation about his physical medicine appointment and upcoming orthopedic appointment. His platelet count was low (unsure why). We will be keeping a closer eye on this. On a positive note, this was his LAST PENTAMIDINE TREATMENT!!

12/06/2020

So, today was a difficult day.
The past 3 years have been about saving Ryan's life at all costs. Unfortunately, the cost has been his mobility. (Please know that we are thankful for his life and health. We know that things could be so much worse, but we want to share his story and progress. Ryan does not want pity or sympathy. He really could do without any attention at this point, but we know his story may help someone else or just keep our distant and close loved ones up to date.)
Ryan has improved so much! He is self sufficient. He is learning to drive, he can cook, take care of himself, be a stand out student, fun friend, and earned his letter his freshman year, singing, but...he still struggles. He is on swim team, but is unable to do most of the dryland workout. A day at the zoo or the museum? No. It is too much walking. He is not weak or tired, but his foot/ankle begin to fail him. Waterpark? Disney? Hiking? A day at the beach? A wheelchair is needed. Not the entire time, but he can't make the journey without it. (Put yourself in his place, he will be 16 in 2 months. What would you be doing or want to be doing?)
Today Ryan had an appointment with the physical medicine doctor. She explores neurology, orthopedics, physical therapy, etc. Ryan's hope from this appointment was a solution and something to work toward. Neither of those hopes were met.
Suggestions included keeping both braces pictured and adding an additional brace. (To Ryan, this is a step backward.) Also, she suggested a nerve stimulus device and showed him a video demonstrating the success of it. Unfortunately, this video (and on other occasions as well) Ryan was presented with a video of someone who has multiple handicaps, (usually a toddler). Never is he shown a video of a person that looks like him or has a life like him. They show victory of the treatment with people clapping that the girl can go down a slide by herself or a toddler "running" with her friends. We would never want to discount the success of the girl in the video. She is doing amazing things, but today this made Ryan cry.
Ryan cries in anger. He cries out of loss. To save his life, sacrifices were made.
He has been referred to orthopedics, which the physical medicine doctor said would probably recommend the same protocol.
He is beyond frustrated, so in the afternoon we cooked. We made Chinese Char Siu Bao for the first time. Ryan is always the best chef.
Please pray for his blood counts to stay normal, his nerves to grow back, for a path to heal his disabilities, and for peace and happiness for his mind and spirit.

21/05/2020

Yesterday, Ryan had his monthly blood draw, doctor visit, and Pentamidine treatment. (warning this may be a longer post to provide Covid info and his progress)
Yay!!! His blood counts were all in normal range!!! I know that may not mean much to most people, but this is the first time in over three years that he has had blood chemistry in the "normal" range!!! He checked in at officially 5'11" and 139 lbs a lean mean fighting machine!
Protocol at the hospital has progressed since our last visit. To enter the elevators out of the parking garage, you are greeted with 2 nurses with questionnaires, who take your photo and your temperature. Usually, we need to drive around the 4 tier parking structure to find availability. Yesterday, it was open on the first floor.
After we passed into AREA 14(AKA Area 51 or home of Experiment 626)... (Ryan always makes a big deal of this.). At TCH, the 14th floor is the Oncology floor, but it is really not the 14th, it is the 13th, the elevator jumps from 12 to 14. There is not a 13th floor...Ryan noticed this 3 years ago, there is no 13, but really?! we're there.
Cancer-wise, thank God he is doing great. We are now entering the time of repercussions /side-effects (Area 51...the unknown). He has been in physical therapy since 2017. We have a specialist list so long that I don't even recognize some of the names. He has now been referred to a Physical Medicine & Rehabilitation doctor and Orthopedic Surgeon.
Our goal is to restore him. If we have to, we will rebuild him. Ryan has so many goals and dreams that we hope to make come true. Thank you for your support and prayers!