«

»

Oct 11 2012

Survivor Spotlight – Stephen Ries

Tracy and Jon Ries, parents to Stephen, age 4. As told by Tracy…
By Volunteer Joanne Glosser Jaeger

Live in the Shenandoah Valley of Virginia.

Tracy: I worked as a software engineer/support manager and quit my job to stay home with my children.

Jon: An HVAC service technician.

Family Life: Seven children (two of which are grown and married) ages 22, 22, 17, almost 9, 6, 4, and almost 3; and one grandson, 2. We are a homeschooling family. It has worked to our advantage, as we have discovered many of the individual talents that might have gone unnoticed otherwise!

Stephen is 4 years old, and is totally amazing. I had concerns over a tremor and weaknesses he had when he as about 3. The neurologist said there was something going on, and ordered a full brain and spine MRI. His head titled, one shoulder was raised, absent lower extremity reflexes, decreased strength, delayed motor development, and he had scoliosis. The scan revealed a large SCT from C7/T1 – T7 and a couple of syrinxes. He was admitted immediately and started on steroids to prep for surgery. His surgery was on the February 24 2004. I was given all of the dirty details of possibilities and probabilities in advance…

The doctor warned me that after surgeries the tumors often “poof” back out, like a sponge that has been compressed and is suddenly let go. They repeated the MRI after one week, and the tumor had done exactly that. The tumor that remained filled the entire cavity created by the surgery. It was not new growth, but it did give them a better estimate of how much of the tumor had been removed, somewhere in the 25%-40% range.

It was determined that the tumor was an astrocytoma, grade 2+. Stephen started chemotherapy in March 2004. I was told that they did not expect it to get rid of the tumor, but since Stephen was so young they did not want to do radiation. They felt this regimen had a chance of slowing down the growth of the tumor until he was old enough for radiation.

He surpassed all expectations during his recovery. Initially, since he couldn’t walk after the surgery, he was admitted to an inpatient physical therapy facility. One PT gave Stephen a little trike to sit on and push himself around. In a very short time, that kid was getting all over the place. Originally, they had intended to admit him into an inpatient rehab facility, but since he worked himself so hard we got to skip the facility and go straight home, about 8 days after the surgery. There he learned to walk again within a few short weeks. He was AMAZING.

Stephen went through the typical chemotherapy stuff… several infections… his hair thinned out pretty drastically about 4 months into it (okay, he was bald!) He didn’t get sick from the chemo very often, but he didn’t enjoy eating very many things. Since Stephen’s scans were good they decided to discontinue chemo altogether. Stephen began his monitoring phase at that point, and has been getting brain/spine MRIs every three months since then. His next one is scheduled for December. He calls Children’s Hospital “his” hospital.

It’s kind of funny… After Stephen’s first MRI after he started chemo, Dr. Packer practically did a dance at the drastic improvement. It was wonderful. After the next set of scans, I got the word that he was “amazing.” Some scarring, but the tumor was almost gone. After that, I kept hearing “stable.” After the decision was made to discontinue chemo and the MRI was done, I finally asked what exactly “stable” meant, and the report was “No residual tumor, no recurrence of tumor.” All I could do was thank God! I did thank Dr. Packer and Drs. Rood and MacDonald!

Stephen is walking, running, jumping, being just as rambunctious as any other 4-year old. He is happy, healthy and totally enjoying life. AND he knows a whole lot more about medicine than any other 4-year old I know…

Make-A-Wish

They made arrangements with Give Kids the World Village, a resort area design specifically for critically ill children and their families near Orlando. Make-A-Wish provided Stephen’s wish trip to Walt Disney World for our whole household (Stephen, parents, and siblings in household under 18.) That’s a lot of us – 5 of our kids fall within that age group! They sent a Wish box before the trip with instructions, a t-shirt and camera for Stephen, and a book to help us decide what we wanted to see while we were there. They provided airfare to and from Orlando, 6 days at Give Kids the World, a rental van, money for food, expenses and souvenirs, and an amazing vacation that our family will NEVER forget! They coordinated with the volunteers at GKTW to make sure our plans were made and confirmed, and someone met us at the airport to help us get our rental van and get us to the Village as quickly as possible.

MAW and GKTW provided us with tickets to all of the major theme parks! If there was a park we wanted to go to and didn’t have tickets, all we had to do was ask. There was an evening provided for the parents to get away by themselves if they wanted to. They left presents in the Villa for all of the kids every day; when we got back from a day at the parks, the kids would run into the Villa to see what special present was left for them. It was great!

Stephen was referred to the Make-a-Wish foundation, which is an organization established to grant a big wish for critically ill children. Stephen’s Make-A-Wish trip was in August of 2004 when Stephen was 3 years old. Stephen was in chemo at the time, and they were wonderful about working around our hospital trips. MAW volunteers came to our home to talk with Stephen about what he wished for. He wanted to go to Walt Disney World. They told him that they would try, but if they couldn’t, they wanted to know what else he might wish for. He told them that he loved

NASCAR and wanted to meet a couple of the drivers that he liked.

They made arrangements with Give Kids the World Village, a resort area design specifically for critically ill children and their families near Orlando. Make-A-Wish provided Stephen’s wish trip to Walt Disney World for our whole household (Stephen, parents, and siblings in household under 18.) That’s a lot of us – 5 of our kids fall within that age group! They sent a Wish box before the trip with instructions, a t-shirt and camera for Stephen, and a book to help us decide what we wanted to see while we were there. They provided airfare to and from Orlando, 6 days at Give Kids the World, a rental van, money for food, expenses and souvenirs, and an amazing vacation that our family will NEVER forget! They coordinated with the volunteers at GKTW to make sure our plans were made and confirmed, and someone met us at the airport to help us get our rental van and get us to the Village as quickly as possible.

MAW and GKTW provided us with tickets to all of the major theme parks! If there was a park we wanted to go to and didn’t have tickets, all we had to do was ask. There was an evening provided for the parents to get away by themselves if they wanted to. They left presents in the Villa for all of the kids every day; when we got back from a day at the parks, the kids would run into the Villa to see what special present was left for them. It was great!

GKTW was a paradise set up with kids in mind. They have a train ride and arcade, a room with model trains running through it, an all-you-can-eat ice cream shop, a carousel, the Gingerbread House (cafeteria), beautiful walkways, pools, fishing, and pizza delivery. They don’t want you to pay for anything. Many of the Disney Characters came to visit and sat and played with the kids. It is Christmas

Stephen LOVED Walt Disney World! He was totally taken with the castle and the characters. We were given special privileges because of MAW & GKTW – we had a button that we wore that gave us instant access to rides and a free stroller rental each day. Stephen got to do whatever he wanted, and had a blast!

There was a lot of magic at Disney for Stephen. Meeting his favorite characters, riding the riverboat and the train, seeing the animals. Disney’s special assistance approach to the Wish Kids added so much to the enjoyment, too. As one of the ride techs put it, “We don’t want him to have to wait for anything!” Even on the times where his oldest brother and I wanted to ride a ride together, they would lead us up to the front of the line, because they said he shouldn’t have to wait for us, either. I feel like that really enhanced his visit to Disney, because he got to go straight from one exciting adventure to another!

There were many things about the MAW people that amazed me. Stephen was admitted into the hospital for the week before we were due to leave for his trip. He felt great but had an infection that he had gotten into his bloodstream through his long term IV. He had to be fever-free and have clean blood cultures before he would be allowed to leave. MAW was on the phone with us frequently, also in contact with our home IV medication provider, and helped us square all of the arrangements. They would have postponed if we needed to, but we really did not want that to happen. Once he was cleared to go physically, they helped us make the arrangements so that I could store and administer his meds once we got there. It was smooth sailing in the face of a huge storm! We were set to go! We would give him his IV before we left for the park, and take a snack break or two during the day where we would find a shady place and hook him up again. His meds came in these nifty balloon/jar contraptions that did not require gravity, so no pole was needed. We just had to carry a little cooler with us. It worked well. Stephen got to have his treatments and a great, great time all at once!

I really can’t tell you how much that trip did for Stephen. He was HAPPY, his confidence grew, he got to see things he had only imagined before, and he was not disappointed in the least. We are so very grateful to Make-A-Wish, and to all of the corporations and individuals who help fund their efforts!

Make-a-Wish also treated Stephen and two guests (mom and dad, of course!)

to a NASCAR Busch Series Race down at Richmond International Speedway. That was AWESOME! He was completely caught up in the race. There was no way we would have been able to take him without Make-a-Wish.

Having to deal with childhood cancer has obviously had a huge impact on our family. For one thing, it has really challenged us to practice what we preach, especially in areas of relationship with God and faith in Him. As an end result, it has definitely strengthened us as a unit. Cancer is expensive, both financially and emotionally! That puts huge stress on a family. There were times where I could see obvious impact on Stephen’s brothers and sisters. For example, I know that his brother really struggled with the tough questions, like was Stephen going to die? Was he going to get a tumor too? Very tough questions for anyone! Another one of his brothers seemed to withdraw somewhat and started acting out in school. We could understand how that could happen with what his brother was going through, and with the numerous times I was away from him with Stephen in the hospital. He had the same concerns as us, but didn’t know how to voice them. We have done our best to encourage open discussion, while at the same time encouraging very positive conversation. Every one of us faced the facts and understood what was happening, and we chose to trust and believe for the best. If fears came up, we dealt with them openly.

I forgot to mention how grateful I have been for the SCTA. The thing that shines to me about the SCTA is SURVIVORSHIP. There is so much experience and knowledge here that is so helpful for someone who has just found out that they or a loved one have a spinal cord tumor. And, the fact that all of these people have ‘been there and done that’ adds a wonderful sense of grounding and realism to the discussions. I was told that my son’s condition was “rare” and had no contact with others who experienced and survived the same condition until I came here. I am constantly learning new things about what my son could possibly be experiencing because of the SCT that I might not have known otherwise, since he is a young child with age-appropriate communication skills. The determination and fight that exists in the members of the SCTA is a tremendous example! Life does indeed go on, with vigor, with enthusiasm, with hope. One thing I have discovered is how totally important it is to keep a positive attitude and atmosphere. Tickle fights are a must. Laughter really is the best medicine! Hope is contagious – we saw that over and over! Faith in God… well, that carried me through without any doubt.

The word “cancer” scares so many people, and the thought of it being in the spinal cord… well, some people just don’t know how to handle it, and they feel inadequate talking to someone directly affected by it. I understand, honestly I do. But because of this experience, I am encouraged to be an encourager now. I am a shoulder if a mother has just found out her child has a tumor… I shine the light of hope whenever and wherever I can. I try to do things or send gifts to help another child who is dealing with cancer and his family take their minds off of it for a while, just like so many have done for us. I think I am stronger – we all are – as a result of what Stephen has come through, and I am totally amazed by my son and his strength of resolve. He really is amazing. I think I’ve learned a lot more about what’s important, like, it’s okay to sit down and play a game with the kids, even though the dishes are dirty. They will get washed… eventually… but I don’t want to throw away any opportunities to enjoy these kids anymore.