update on Ryan
AnonymousMarch 24, 2010 at 10:56 pm
just wanted to let everyone know that Ryan has had 3 cytoxan treatments so far and he is now out of his wheelchair and walking. most of the time he is not even using his walker. I took him to the chiropracter today and I got out of the truck and started to walk around to get his walker out and I looked up and he was half way across the parking lot already yelling at me to leave it in the truck, he didnt want it. lol I had to laugh he has been very sassy the last few days. haha!! he is just feeling so strong. he has to use his AFO’s but its great he isn’t using his wheelchair for anything other than when we go out and have to go a long distance like walmart or the mall.
oh and just a little funny thing, Ryan has been scaring me all weekend long. I am used to hearing him coming when he was using his wheelcahir but now with him walking around the house I dont hear him coming. I was in the kitchen cooking and all of a sudden out of the corner of my eye I seen a figure and about had a heart attack and turned around and it was Ryan. lol he seems taller now. lol He’s 6’5 and boy after being in a chair for a year he seems way taller than I remembered.
Rhonda (RyaN’s mom)
AnonymousMarch 24, 2010 at 11:40 pm
I couldn’t be happier to read your post! You will now have to update his picture to one that shows him standing up. You made my week! I will be smiling and smiling all week long knowing this. And I will keep Ryan, you and your family in my prayers for his continued success.
I am so, so, so happy for you! I know how difficult this is to deal with emotionally but I console myself that it hit me later in life and I had many opportunties to be very active and do a variety of physical things (and I can still do many things, just not as much or not like before). I can’t imagine how hard this is for you. But check you out now! Sneaking up on your mom … taking off on your own … you must be pleased with the results to date. I trust that it will continue to get better and better for you.
You both are in my heart and prayers,
AnonymousMarch 24, 2010 at 11:51 pm
I cried reading your post. I could not be happier. I hope that Ryan continues to get better and better. He has been a real hero through this whole thing. Sometimes God wrecks our lives and then puts them back together. Who knows maybe Ryan will go into the medical field and come up with a cure for autoimmune disorders. He is a changed person inside and out. Please keep us posted.
AnonymousMarch 25, 2010 at 11:45 am
That is AWESOME!
I remember when Emily had 2 IVIG treatments & we were allowed to take her home from the hospital. She went to her room & started jumping on her bed yelling “I GOT MY JUMP BACK!”
I imagine you have the same feeling seeing Ryan walk around that I did that night watching Emily jump. There is absolutely nothing like it!
Good job to Ryan! And here’s hoping he gets even better!
March 25, 2010 at 12:11 pm
What awesome news!! Sass away Ryan!! I am so happy for you!!
March 25, 2010 at 3:54 pm
Way to go Ryan! Nothing could have thrilled us more or brought more hope into our hearts than the progress you’ve made!
AnonymousMarch 25, 2010 at 7:10 pm
Hi Rhonda and Ryan,
It is fantastic news that the Cytoxan is working so well for him!!!
What is the plan with the drug? How long do they plan on giving it to him, then stopping? Are they going to eventually stop, then see what happens?
To see if he is finally in remission?
I DO HOPE SO !!!
I wish I could have stayed on Cytoxan, as even though I did not go into remission, it had slowed the progression of the CIDP. But, after being on it for 2 1/2 years, it was finally doing damage to my kidneys and bone marrow.
Now I am on Rituxan, which I feel will not help me at all, but it is the last drug they have to use. But I have a slim chance I might be able to get stem cell transplant here in California, so, I am actually crossing my fingers that in 5 more months, that this Rituxan does NOT do anything, as that is when they said I would be able to go through evaluation for the transplant.
I hope they do not plan to have Ryan on the drug too too long, as what can happen like what happened to me.
Take care, and perhaps now he can get back to enjoying life like someone his age should be enjoying!
March 25, 2010 at 10:43 pm
Great news Rhonda and Ryan! I’m glad to hear the new treatment is allowing your nerves and body to heal.
I definitely know where Ryan’s coming from. It felt sooooo good to me to leave the wheel chair behind, I guess I was probably joyful to the point of sassiness too. I can’t wait to hear how Ryan handles leaving the AFO’s behind. 😀
AnonymousMarch 26, 2010 at 11:24 am
Ryan will only be doing Cytoxan for 6 months and then he will be put on immuran at least that is what we discussed at the being of all of this. who knows maybe be he wont have to go on anyting else.
we cant wait to see what July brings if he is already to this much better after just a month and a half of (3) treatments.
I pray that you will be able to get that stem cell transplant done. I am sending all of the hope and power of prayer I can.
thank you to every one else its just makes our days so much brighter seeing him walk.
God is good all the time. even when we felt we where going through this all alone he was there carrying us through each day. we always try to focus on one day at a time so it doesnt get to overwhleming. I am just glad we are finally seeing some improvements that could actually last.
AnonymousMarch 29, 2010 at 6:34 am
Just love hearing this great news. I too have been getting stronger since the cytoxin treatmetns started in September. (Bad me for not posting)
We are almost 30 years apart, but our periphial nerves are the just starting to function again! It’s great to read your doing the little things once again that other take for granted. I’ll keep praying for you and hopefully this summer you’ll enjoy summer doing the simple things you enjoyed so much before this strange disorder changed your life, foreever. As for me, when I’m walking behind a kite on Lake Michigan this summer, I’ll look south towards Zeeland and say Hi!
AnonymousMarch 29, 2010 at 9:13 pm
My daughter and I had the pleasure of meeting Rhonda and Ryan this past weekend. We had a great time getting to know each other. I feel very blessed to have been able to see Ryan walking with just his AFOs. It was truly amazing. He is making so much progress and has such a great attitude!
AnonymousMarch 29, 2010 at 11:04 pm
We had a great time with you and Emily too. It was good to see Ryan having so much fun with Emily playing monopoly lol its been a long time since he had that much fun. We will have to do that again sometime in the near future.
Randy I am glad to hear your doing well too. Do you still have snow there? our snow is gone now. Ryan did get to go snowmobiling a few weeks before it melted. he has such a good time doing it. Its such a great feeling seeing him doing some of the stuff he hasn’t been able to do in a while.
You must be logged in to reply to this topic.