Here's the story of our miracle! Ryan was diagnosed in April, 2004 with a spinal cord tumor that spread to the brain. He underwent several surgeries, followed by radiation and chemotherapy. He lost all motor function, but has worked so hard to regain most use of his arms and legs. His unbreakable spirit and determination have inspired countless numbers of people. This little boy has shown us all how precious life is and to never take a single thing for granted. He is a warrior and a hero. Twice he has been on hospice - given only days to weeks to live - and twice he has beaten the odds. God has shown Himself a strong presence and has granted us many miracles throughout our journey. In 2007 Ryan was diagnosed with kyphosis, a curvature of his spine. The curvature significantly worsened, and in March 2008 we started the process of correcting the curvature. He was placed in halo traction for two months, and had a spinal fusion surgery in May. He is currently healing with a halo brace on. Ryan continues to work hard everyday. He attends first grade and goes to private PT and OT. Because of Ryan's strength and the grace of God, we KNOW that Ryan is completely healed and that God has some amazing plans in store for him! We BELIEVE in the power of prayer and ask all those who know of Ryan and his story to storm the gates of heaven with prayer for our beautiful son.
"God keeps His promise, and He will not allow you to be tested beyond your power to remain firm; at the time you are put to the test, He will give you the strength to endure it, and so provide you with a way out."
-I Corinthians 10:13 (TEV)
John 11:4 “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.”
Journal
Friday, October 31, 2008 8:19 AM CDT
Tuesday November 11th, 2008
Jenni asked me to update quickly with a note that the scans are stable at this time. She will update more later.
Thanks for all your prayers.
**Monday Nov. 10th**
Just a quick update to let you all know that Ryan was released from the hospital. He had to be transfused with two units of blood yesterday. He is feeling better today, and, thank God, he hasn't a fever since yesterday. I think that his little body was just tired and that he really needed the blood. His color is a lot better and he told me that he "feels like brand new!" We are leaving for St. Jude in just a little bit. We will arrive late tonight, and then the marathon of appointments will begin first thing in the morning. We will fly back home tomorrow night.
Please pray for GREAT MRI results tomorrow.
Someone will update tomorrow as soon as we know something.
Thanks so much.
Love, Jenni
**Sunday, November 9th** Well, we are still in the hospital. We thought we were doing well yesterday because Ryan had a fever in the morning, and then nothing else until midnight last night. He spiked another fever at midnight, and then this morning his blood counts are low again. Low enough that he needs a blood transfusion, so he will be getting a blood transfusion today for the low counts. I just don't understand what is going on. He hasn't had chemo in 10 days, and in the 50 weeks of him getting chemo, he has never reacted anything like this this. Unless, whatever is causing the fever is causing the drop in counts. I don't know, and the doctors here don't seem to know either. I am so frustrated and upset, but there is nothing I can do about it. Ryan and I are both so tired of being in the hospital, we both just want to go home, but I know that we have to do what we have to - to make him better. Also, he has developed diarrhea from the antibiotics they are giving him around the clock, and that isn't making him happy, either. The poor kid is miserable. Well, that's all that I know for now. I'll keep the web page updated as we know what is going on. Thanks for checking in on us.
Please continue to pray for Ryan.
Thanks.
Jenni
*Saturday, November 8th** Ryan has been admitted to the hospital. He has a fever that keeps returning. It was 104.5 last night in the ER. Just now - at 8:30 am - it was 103.7. It had gone down last night to near normal, but is right back up there again. We don't know what is causing the fever - his blood work is better than it was earlier this week. On Monday, Ryan spiked a fever at school, and I had to bring him up to the hospital to be checked out. His blood counts at that time were very low. He was given an IV dose of antibiotic and was allowed to go home. He was fine - no fevers - on Tuesday or Wednesday, then Thursday night he started not feeling well again. So, we brought him in to the ER yesterday, and here we are.
Please pray for the fevers and whatever is causing it to go away. Ryan feels miserable with such a high fever and he has been through enough. Please pray for them to find what is causing this and then treat it appropriately so we can go home. Ryan is miserable here in the hospital, too.
Please just pray for Ryan.
I'll keep this web page updated.
Thanks.
Jenni
Friday, November 7th, 2008
Hi, all
Jenni asked me to update the page quickly. Ryan is in the ER with a high temperature. They are waiting for the results of blood work and don't know what is wrong yet. Jenni asks that you please pray for Ryan as he faces yet another battle.
Thanks.
Cheryl (Jenni's mom)
There are two new pictures added. Check out how great Ryan looks!
Hello.
Well, again, I must apologize for such a long delay between journal entries. I just can't seem to find enough time in the day for even the simplest of things. I really need to make some changes in my life, because I seem to be running around all the time like a chicken with its head cut off, and I can't stand it. I just don't know how to make those changes when I have so many responsibilities. Oh well, maybe one day I'll get it figured out.
Things are going fairly well here. Ryan has been doing ok. We've been having some behavior problems with him lately. He hasn't been behaving well at home, at school, or at therapy. I don't know what is going on with him. We really try and make sure that he is being disciplined when he misbehaves, but it seems like he doesn't care about anything enough to care if it gets taken away. It's definitely a struggle everyday. It always has been, but it has been even worse lately. Before, I could threaten to take something away, and it was enough to deter him. Now, he doesn't even care about getting things taken away. Jose and I can't figure it out. But, we will keep trying until we find some way to get through to him.
Ryan is still on chemo. We just finished week #50. We are returning to St. Jude on Nov. 10th. Ryan will have an MRI on Nov. 11th, and after that maybe we will find out how much longer we will be doing the chemo. I must admit, though, it will be hard to stop. Ryan basically has no side effects from the chemo, and there has been no new growth of those lesions in his spine, so Jose and I both take some comfort knowing that the chemo must be doing something. And, since it isn't making him sick in the least, why stop?? But, obviously, he can't be on chemotherapy forever, so we will just wait and see what the doctors say. They originally told us that Ryan would be on this chemo for 12-18 months. It's been a year, so we'll see what happens.
Ryan is getting stronger, slowly. It would happen much faster if he would cooperate at therapy better. But, at least his walking is a little better. He is definitely steadier on his feet. He rides his bike at school, and we bought him another bike to have at home so that he could ride his bike while Andrew was at football practice, or just ride it whenever the weather was nice. It definitely helps, and he enjoys it. He likes how fast he can go on this new bike. Jose and I have to run to keep up with him! He loves that!
Instead of him sitting in his wheelchair, he is riding his bike for trick-or-treat tonight. That is way too far for him to walk, so we are going to wrap aluminum foil around his bike and make it look like a Harley and he will dress up like a Harley biker. He has a leather Harley jacket to wear along with a bandana for his head. I will use my make up pencil and draw a mustache/beard for him. I'm sure that he will look cute. Andrew is really into "Star Wars" right now, so he is going to be Darth Mall from the movie. He is a bad guy, and Andrew is pretty happy about wearing that creepy looking mask. When I asked him what he wanted to be for Halloween, he said "just something from Star Wars, but make sure it is someone that carries a weapon." It's all about the weapons for these boys, I guess. Last year Andrew was Elvis and it was fantastic. He looked great. I was hoping that he would just be Elvis again, but he wanted to carry a weapon this year. Boys will be boys.
Football season is over, finally. Andrew did really well this year. He played some for the fourth grade team, as well as the entire third grade game. (He is only a third grader) He played center and did a pretty good job. We were going to take the winter off from sports, but Jose decided to let Andrew try wrestling. Thankfully, the practices are only twice a week, and once matches start they will be on Sundays. We just want to keep Andrew active and involved with kids his own age. He ends up spending so much time at the hospital for chemo, then at Ryan's therapy that I feel bad. That's no way to spend your childhood. But, we all do what we have to do, and try to make up for it in other ways.
All in all, things are pretty good. As long as I stay positive and don't focus on all the bad stuff, I do fine. Some days are better than others, and with Ryan's next MRI only a couple weeks away, I'm definitely feeling the stress. I'm having a hard time seeing the good in our lives. I know that sounds really stupid - with how far Ryan has come - but it just seems to be one difficult trial after another for Ryan. I want to see him thrive. I want to see him happy. I want to see that he doesn't have to struggle each and every moment of each and every day. Nothing is easy for him and that bothers me to the core. I don't know how to make life any easier for him, and some days I think that I actually make it more difficult by trying to discipline him - and that just adds to my guilt. We have all been swimming upstream for a LONG time. Four and a half years. I'm not complaining - I'd rather be swimming upstream than not swimming at all - but I'm ready to see something change for the better in Ryan's life. I'm ready to see him not have to struggle so hard. To see him just enjoying life without any of the burdens he has. He deserves that so much. But, until that happens, we will keep on keeping on. We will continue to praise God for the blessings that we do have, knowing that there are people worse off than us. We will continue to praise God for our beautiful boys, who we get to hug and kiss every day - and that is all that matters. We are together - Ryan is here with us and we thank God for that each and every day.
Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer
Please continue to pray for Ryan. Your prayers mean so much, and that is what keeps us going.
Note: The foregoing information was
authored by the patient, parent or guardian, or other parties who
are solely responsible for the content. Such announcements or their
content are not necessarily endorsed by CaringBridge, Inc. or any
sponsoring agent. This information does not confirm that anyone
is or was actually a patient at any facility.
