Ryan’s amazing progress
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April 7, 2010 at 8:59 am
In case some of you are new and don’t know Ryan’s story I will make a long story short: he is 21 and a college student and was dx with CIDP in DEc 2008. in a wheelchair by April 2009 and in the wheelchair ever since. Ryan has done IVIG, Plasma Pheresis, prednisone and it didnt work. Ryan started cytoxan (chemo) in Feb 9, 2010 and he has been walking with a cane for the last 4 weeks. its been amazing and exciting to watch. a little scary at times too lol.
however, he had his appt with Dr Lewis on Monday of this week and we didnt email him about Ryan’s progress cuz Ryan wanted to suprise him. and boy was he shocked. he came out to get us and he seen Ryan and he said come on back and he almost fell over when Ryan stood up and started walking toward him. it was funny actually cuz he even said to us that he would not have thought Ryan would have made this much progress on cytoxan so fast. he just kept repeating this is so fantastic.
He examed Ryan and tested his strength and said Ryan now has his reflexes in his arms back which he thought was a miracle in its self. Ryan overall strength has improved dramactically since Nov. He told Ryan to start making plans for the rest of his life that he believes this will put him into remission and that he probably already is but he will let Ryan finish the 6 month protocal to get its full effect. We will see him in August and then Ryan will go back to college in August too.
It was such a wonderful appt and Ryan will probably get a EMG in Aug to document the progress. then after that if he is still doing well he will see Ryan that next year to do follow up on his progress.
Just wanted to let you all know the exciting news. Thank you for all of the prayers and support. we will continue to update you all and follow all of your progress. I pray that everyone will find a treatment that works for them.
Rhonda & Ryan
ps we are working on finding a way to post a video of Ryan walking on this site
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April 7, 2010 at 9:04 am
Rhonda , this is AWESOME news !!!
I am SOOOOOOOOOOOOOOOOO happy for Ryan !!! And, you, AND your family!
God Bless,
Stacey -
April 7, 2010 at 10:32 am
We regularly pray for Ryan. We are so happy for you both as I know what it feels like to see your child suffer. Ryan is going to do something great with his life, I just know it.
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April 7, 2010 at 1:06 pm
Very exciting news…it is nice to read some positive news on this site for a change!! Congrats on the progress.
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April 7, 2010 at 1:21 pm
that is awesome!
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April 7, 2010 at 1:36 pm
So happy to hear of Ryan’s wonderful healing and thank you Rhonda for working so hard along side that great young man to help him!
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April 7, 2010 at 2:01 pm
[I]it’s true that it’s such a delight to read positive stories here …
I am so pleased to read your news … so very very pleased … and happy for you![/I]
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April 7, 2010 at 8:01 pm
[FONT=”Microsoft Sans Serif”]i’m very happy to hear this!!![/FONT]
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April 7, 2010 at 8:39 pm
[B][COLOR=”Orange”][SIZE=”7″] YES! I am soo glad you kept at [COLOR=”orange”][COLOR=”Black”][SIZE=”3″][/SIZE][/COLOR][/COLOR]it all![/SIZE][/COLOR][/B][B][/B]
I am thrilled. It can get soo far, and you despair, yet- sometimes things work out. I am soo happy for you. Keep good news coming, please!
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April 7, 2010 at 10:34 pm
Wonderful!
Keep progressing!
Shirley
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April 8, 2010 at 8:32 pm
Rhonda & Ryan, you are both living examples of prayers do make a difference!
Congrats to you both. -
April 21, 2010 at 4:04 pm
We’re all thrilled. Hope is a powerful drug.
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April 21, 2010 at 8:56 pm
Wonderful. Keep up the good work!
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April 26, 2010 at 5:04 pm
Thanks everyone
things are going really good with Ryan. he hardly ever uses his wheelchair now and is very mobile. still having issues with pain in his feet and ankles but we are working on it.
He is currently planning a trip to mackinac Island in July with is friends to ride bikes and spend the day having fun. his physical therapist is working on his bike riding skills.
We do appreciate all the prayers that have been sent our way. Ryan will continue with is chemo until July. we are trusting in God that he will allow Ryan to be in remission for a very long time.
Rhonda
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April 26, 2010 at 9:43 pm
Let’s trust that it is forever. When God heals, he usually heals for good. Mackinac is a great place. Maybe we should go there too. Would love to stay in the Grand HOtel. haha Ryan is in our prayers.
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May 2, 2010 at 10:19 am
Rhonda & Ryan,
That is such wonderful news, almost like a miracle isn’t it? My neuro told me if the cytoxan works, the CIDP won’t come back, so Ryan should go ahead with his life with that thought; just keep moving forward. Going back to college would be so wonderful for him, he has just been through so much. I would expect continued progress, nerves can heal for up to 2 years after the CIDP is arrested…
Pam -
May 3, 2010 at 11:51 am
Pam we are so hoping its forever.. he is so excited that he is going back to school in August. he and his college friends have planned a byike trip to Macanaw Island this July and he rode a bicycle for the first time last week since he has become sick. its so exciting to see all the stuff he can do that he hasn’t done in a year and a half.
I well up with tears every time I think about where we were last summer compared to where he is today. God has been so good and I give all of the praise to him. so many people have prayed for our family and for Ryan and God has answerd all of our prayers.
When people start praying things start happening. The power of prayer is so powerful. You can’t just pray you have to believe God is going to do what you have prayed for.
we have tried to keep a journal of ryan’s journey so we could see the little improvements. its so easy to go through each day and miss a small improvement and think the prayers are not working. we didnt want to miss anything. we have praised over the little stuff as well as the big stuff. there have been times I wondered and asked him where he was but he was always there even in our darkest times.
But we are thrilled for his progress and we continue to pray for everyone here at this site that they will find a treatment that will put their CIDP into remission.
Rhonda
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May 3, 2010 at 11:57 am
HI Pam
we are so hoping its forever.. he is so excited that he is going back to school in August. he and his college friends have planned a byike trip to Macanaw Island this July and he rode a bicycle for the first time last week since he has become sick. its so exciting to see all the stuff he can do that he hasn’t done in a year and a half.
I well up with tears every time I think about where we were last summer compared to where he is today. God has been so good and I give all of the praise to him. so many people have prayed for our family and for Ryan and God has answerd all of our prayers.
When people start praying things start happening. The power of prayer is so powerful. You can’t just pray you have to believe God is going to do what you have prayed for.
we have tried to keep a journal of ryan’s journey so we could see the little improvements. its so easy to go through each day and miss a small improvement and think the prayers are not working. we didnt want to miss anything. we have praised over the little stuff as well as the big stuff. there have been times I wondered and asked him where he was but he was always there even in our darkest times.
But we are thrilled for his progress and we continue to pray for everyone here at this site that they will find a treatment that will put their CIDP into remission.
Rhonda
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May 3, 2010 at 11:14 pm
A noted folk singer and I’ve met him, he is a good person.
The song long ago, which was ‘Inch By Inch Row By Row, Gonna make the Flowers grow’.. etc. I like to think that it’s about taking time to let things happen as they should, if you help.
These things do come in snail paced increments. Mostly. Once in a while something ‘happens’? But most of it is in small things.. doing more, going better and being HUMAN in ways you think you’ve lost? You aren’t lost, simply slower than any expected ‘curve’ for performance. I hate those standards? But I am soo happy for Ryan! I know you’ve gone to bat and beyond for him, & I am hoping now with all my might that this is a ‘keeper’!
I somehow would like to believe that it WILL BE ONE! So there!
Please? If you can? Give him a hug for me for being so brave, even bold thru this all! Sometimes we do tend to get ‘cowed’ or humbled with all this…more than we should, or need to be, due to bad diagnoses.
You are proof that one can overcome the ‘system’ and actually succeed!
Wishing you and Ryan, and your family good things for the future! The sky is the limit! No? YES! – hugs. -
May 4, 2010 at 6:15 pm
While you’re at it, give Ryan a big hug from me too; I am half Italian & very into hugs. My CIDP was arrested in 2003 & I had my last cytoxan infusion that September, that was the last infusion or treatment that I ever had to have. I spent 3 years in Ryan’s condition, it’s a wonder he never gave up hope, as I admit I did at times. It took me over a year to get back all that I got back, but every day I wake up the same, haven’t lost anything (what a good feeling.) It’s just nice to know that there truly is something out there for those who are refractory to IVIG, PE & steroids. I will still pray for Ryan, that he gets completely back to normal, as Emily did…
Pam -
May 7, 2010 at 10:37 pm
Thanks you guys. So far both our local neuro and Dr Lewis thinks this could be a long remission or possible permanent remission for him. of course they can’t guarantee anything. but they are both so excited that Ryan is doingn so well as we are too.
He gets his last cytoxan infusion in July and he’s sees both our local neuro and Dr Lewis again in August and as long as he is good to go he will tehn go to yearly check ups as long as he doesn’t get weak or relapse.
He is all set to go back to school in August and he is just thrilled with that and he has even planing to go on a bike trip with his college friends in July. the bike trip is a 7 mile trip so its not to long. he is just thrilled that he will be going.
he is just an amzaing kid all around but then again I am partial since he is mine. lol.. but he has gone through this whole process with a smile on his face. yes he has had his moments over the past 18 months where he has gotten upset and has shedd a few tears but he wakes up every morning and chooses to put a smile on his face and we laugh about so many things. I dont know if I could have been smiling and laughing like he has. he just makes me smile and he is so easy to love. I’m such a proud mom.
Anyways enough of the mushy stuff lol. I will continue to keep you all posted on his progress and will continue to come here to encourage all of you to keep fighting.
Rhonda (ryans mom)
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