pimaprincess84
Earning My Ears
- Joined
- Mar 4, 2013
- Messages
- 16
We just got our dates for my son's wish trip (Dec. 4 - 10), and so I decided it was time to come out of hiding and start posting here. I have loved reading about other's wish trips, and can't wait to read more.
Let's see, it looks like most people start out with a cast of characters for each trip so that is what I will do. I am Jessica, a 28 year old elementary school teacher turned stay at home mom. I enjoy doing Project Life, digital scrapbooking, and crocheting. When I have time for it I also enjoy reading. I have loved Disney from the time I was little, and am happy to say that some of my love is beginning to rub off on my husband. Which brings us to him, Trevor, age 27. He joined the Navy in 2011, and loves it. It has been a bit of a crazy ride to say the least, but I think all of us have adjusted and are enjoying the lifestyle for now. He loves hiking, watching baseball (especially the AZ Diamondbacks), and flying (he has his private pilot's license). Finally is Shadrach (Shad), age 3 and the wish kid. He went on his first Disney trip at 9 months and has been back many times since. He loves Toy Story, Cars, Mickey Mouse Clubhouse and Star Wars. He also enjoys all other Disney/Pixar movies, his current favorite being The Incredibles.
Now, I guess I should explain the reason we qualify for a wish trip...In October of 2012 Shadrach began to complain of foot pain (ironically on the way to Disneyland) We thought he was just sick of being in the car, and didn't pay much attention to it. He seemed alright for the 3 days we were at Disney, and I kind of put the whole thing out of my mind. Once we got home, he began complaining more and more. I took him to his pediatrician the next week, and she said she saw nothing wrong, and sent us home. He kept complaining his foot hurt (it would switch back and forth which one), and so I kept taking him to the doctor. At least twice a week for the next couple weeks. He would seem fine some days, and in terrible pain others. We had x-rays of his feet and lower legs done, but those came back fine. After a couple of weeks I began to notice that he seemed to be hunching over when he walked, the doctor seemed to think this was ok. The beginning of Nov. he stopped wanting to walk at all. He went from being very active to just wanting to sit on the couch all the time. He started to have some bathroom issues, and would cry when he peed saying that it hurt. We had him tested for a UTI which came back negative. I knew something was wrong and finally demanded that the doctor run some more tests to figure it out. At the last appointment I was so frustrated that I began to cry, and that seemed to do the trick, she sent us down for blood work that same day. I hoped we would get some answers. She said that if everything came back ok, she would send us for a ct scan of his back and abdomen. A few days later she called back and said all the blood work looked ok, there was one thing that was a little high, but after consulting with a hematologist at the Children's hospital, she didn't think it was anything to be concerned about. She suggested that we get the scans scheduled as soon as possible to see if we could find what was causing his problems. About the same time that we had his blood work, he stopped wanting to eat or drink. I held off doing anything to see what the blood results would be, and scheduled the ct scan. Finally, after a few days of him eating and drinking very little I took him to the emergency room. This was November 8, 2012. We spent the day there during which he had an abdominal ultrasound, an abdominal x-ray, and an MRI. That evening the doctor took my husband first, and then me, to another room to tell us that Shad had cancer. They thought it was rhabdomyosarcoma. They immediately transferred us by ambulance to the military hospital where he would be getting his treatment.
The next day, the doctor's took him to do another MRI, this time sedated, so that they could get a clearer picture. After he had been gone for a little while a neurologist came in to tell us that there was a tumor compressing his spine, and that he was going to do emergency surgery. He let us know that it was possible Shad would be paralyzed, but that he was hopeful that wouldn't be the case. During the surgery they also tested his bone marrow, and took some samples to send to the labs for a definite diagnosis. There was a little bit of inconclusiveness as to if it was the rhabdomyosarcoma, or another type of cancer. Shad returned to the PICU where he stayed for the next 13 days. Luckily he began to show movement in his extremities pretty quickly, so the doctor's were pretty sure that he would not be paralyzed. He was eventually diagnosed with stage 4 non-gonadal sperm cell cancer (in the same family as testicular or ovarian cancer but not in the reproductive areas), another name for his type being a yolk sac tumor. At diagnosis he had the tumor in his back, one is his pelvic area, spots in his liver, and spots in both lungs. He also had cauna equida syndrome from his spinal cord being compressed (it gave him pain in his feet so that it hurt to put any pressure on them). We were told that he would have 12 courses of chemotherapy, one course lasted 5 days, and occurred every 3 weeks. He went home on November 24, in a wheelchair, with a brace that he had to wear when sitting up above 45 degrees. He also had a suprapubic catheter put in because the mass in his pelvis was blocking his urethra.
We have been very blessed though, he is now just as active as he was before diagnosis, his back is completely healed, and he no longer has the catheter in. He just finished his 6th round of chemo, and the doctor is pretty positive that it will be his last round. He has scans on the 7th of May to check for sure, and we will find out at our appointment on the 13th.
We are very grateful to the social worker at the hospital who suggested that we fill out the form for make a wish at the very beginning of his diagnosis. It has helped all of us to have something to look forward to, and even though it is still a ways away, we are getting very excited for our trip to DISNEYWORLD!
Wow, sorry this got so long, hopefully other posts from me will be much shorter. Here are some pics of our boy, and our family.
Family picture taken 5 days before diagnosis.
After back surgery (with his trusty sidekick, giraffe)
Getting fitted for his brace
First day home
After losing his hair
Happy New Year!
Now
Let's see, it looks like most people start out with a cast of characters for each trip so that is what I will do. I am Jessica, a 28 year old elementary school teacher turned stay at home mom. I enjoy doing Project Life, digital scrapbooking, and crocheting. When I have time for it I also enjoy reading. I have loved Disney from the time I was little, and am happy to say that some of my love is beginning to rub off on my husband. Which brings us to him, Trevor, age 27. He joined the Navy in 2011, and loves it. It has been a bit of a crazy ride to say the least, but I think all of us have adjusted and are enjoying the lifestyle for now. He loves hiking, watching baseball (especially the AZ Diamondbacks), and flying (he has his private pilot's license). Finally is Shadrach (Shad), age 3 and the wish kid. He went on his first Disney trip at 9 months and has been back many times since. He loves Toy Story, Cars, Mickey Mouse Clubhouse and Star Wars. He also enjoys all other Disney/Pixar movies, his current favorite being The Incredibles.
Now, I guess I should explain the reason we qualify for a wish trip...In October of 2012 Shadrach began to complain of foot pain (ironically on the way to Disneyland) We thought he was just sick of being in the car, and didn't pay much attention to it. He seemed alright for the 3 days we were at Disney, and I kind of put the whole thing out of my mind. Once we got home, he began complaining more and more. I took him to his pediatrician the next week, and she said she saw nothing wrong, and sent us home. He kept complaining his foot hurt (it would switch back and forth which one), and so I kept taking him to the doctor. At least twice a week for the next couple weeks. He would seem fine some days, and in terrible pain others. We had x-rays of his feet and lower legs done, but those came back fine. After a couple of weeks I began to notice that he seemed to be hunching over when he walked, the doctor seemed to think this was ok. The beginning of Nov. he stopped wanting to walk at all. He went from being very active to just wanting to sit on the couch all the time. He started to have some bathroom issues, and would cry when he peed saying that it hurt. We had him tested for a UTI which came back negative. I knew something was wrong and finally demanded that the doctor run some more tests to figure it out. At the last appointment I was so frustrated that I began to cry, and that seemed to do the trick, she sent us down for blood work that same day. I hoped we would get some answers. She said that if everything came back ok, she would send us for a ct scan of his back and abdomen. A few days later she called back and said all the blood work looked ok, there was one thing that was a little high, but after consulting with a hematologist at the Children's hospital, she didn't think it was anything to be concerned about. She suggested that we get the scans scheduled as soon as possible to see if we could find what was causing his problems. About the same time that we had his blood work, he stopped wanting to eat or drink. I held off doing anything to see what the blood results would be, and scheduled the ct scan. Finally, after a few days of him eating and drinking very little I took him to the emergency room. This was November 8, 2012. We spent the day there during which he had an abdominal ultrasound, an abdominal x-ray, and an MRI. That evening the doctor took my husband first, and then me, to another room to tell us that Shad had cancer. They thought it was rhabdomyosarcoma. They immediately transferred us by ambulance to the military hospital where he would be getting his treatment.
The next day, the doctor's took him to do another MRI, this time sedated, so that they could get a clearer picture. After he had been gone for a little while a neurologist came in to tell us that there was a tumor compressing his spine, and that he was going to do emergency surgery. He let us know that it was possible Shad would be paralyzed, but that he was hopeful that wouldn't be the case. During the surgery they also tested his bone marrow, and took some samples to send to the labs for a definite diagnosis. There was a little bit of inconclusiveness as to if it was the rhabdomyosarcoma, or another type of cancer. Shad returned to the PICU where he stayed for the next 13 days. Luckily he began to show movement in his extremities pretty quickly, so the doctor's were pretty sure that he would not be paralyzed. He was eventually diagnosed with stage 4 non-gonadal sperm cell cancer (in the same family as testicular or ovarian cancer but not in the reproductive areas), another name for his type being a yolk sac tumor. At diagnosis he had the tumor in his back, one is his pelvic area, spots in his liver, and spots in both lungs. He also had cauna equida syndrome from his spinal cord being compressed (it gave him pain in his feet so that it hurt to put any pressure on them). We were told that he would have 12 courses of chemotherapy, one course lasted 5 days, and occurred every 3 weeks. He went home on November 24, in a wheelchair, with a brace that he had to wear when sitting up above 45 degrees. He also had a suprapubic catheter put in because the mass in his pelvis was blocking his urethra.
We have been very blessed though, he is now just as active as he was before diagnosis, his back is completely healed, and he no longer has the catheter in. He just finished his 6th round of chemo, and the doctor is pretty positive that it will be his last round. He has scans on the 7th of May to check for sure, and we will find out at our appointment on the 13th.
We are very grateful to the social worker at the hospital who suggested that we fill out the form for make a wish at the very beginning of his diagnosis. It has helped all of us to have something to look forward to, and even though it is still a ways away, we are getting very excited for our trip to DISNEYWORLD!
Wow, sorry this got so long, hopefully other posts from me will be much shorter. Here are some pics of our boy, and our family.
Family picture taken 5 days before diagnosis.
After back surgery (with his trusty sidekick, giraffe)
Getting fitted for his brace
First day home
After losing his hair
Happy New Year!
Now
It sure sounds like he has been through way too much. Thank goodness for you being persistant and making the doctor do more testing! Can't wait to hear more about Shad's magical wish!
We have made some more plans since my last update. My mom, her sister (my Aunt), and my aunt's roommate will be coming to Disney at the same time as us. They will be staying on property and meeting up with us as schedules allow. Shad is very excited as he loves grandma and Aunt Kathy. For the second part of our stay Trevor, Shad and I will be renting a house, and will have our good friends Kevin and Casey joining us. They have been a huge part of Shad's cancer journey so we are super excited about that. We have a breakfast at Tusker House planned, a breakfast at Ohana, and also an evening at Ohana as well. 
