God Bless you and Ryan! I’m so happy for both of you. Ryan has his life
back now and I have no doubt that no matter what he decides to do he will
do it well and to the best of his ability. You are both so lucky to of traveled
this journey together, side by side, through hell and back again, sharing your
tears and truimphs….together, with God right there with the both of you.
You both have been my hope and inspiration. Thank You,
Miss Judy

As you know I came down with CIDP in March of 2002 & my case was very similar to Ryan’s. I had the cytoxan Jan-Sept in 2003 & it put me in remission; I have been in remission for 7 years now this September. The even better news is that Ryan will most likely continue to see improvements for up to 2 years from now. I am so happy to hear that he is back in college. I know how you must worry, I remember when my son in a wheelchair (spina bifida) went away to college back in the fall of 2002. Duluth, MN is not exactly ideal college conditions for a wheelchair student (wintery climate.) But he managed & graduated with honors, even though 6 months after he left home his mother became very ill with CIDP. It will all work out just fine…

I’m so happy to hear about Ryan. I know what It’s like for your child to leave and go to college. I also know how terrible things can get with all the infusions and worry. I’m so happy for you both.

[I]My hopes and prayers are with you and Ryan.[/I]

Is Ryan’s catheter a tube that is hanging out of his chest? If so, Emily had one too, called a Broviac, and she too had an infection.

What happens is proper sterile technique was not being used & that is how the infection developed. I would be having a VERY long talking to with that nurse about her proper sterile technique. If you need advice on what that is, just let me know. Also, catheter’s like that need to be flushed DAILY with saline then heparin – not every other day. I had to flush Emily’s Broviac every day & was trained on the proper way to do it.

He will be antibiotics for a few weeks, I’m guessing. Emily was on them for 3 days in the hospital when they did another blood test. She had to wait 24 hours after the test (to see if bacteria grew) and then she was released. During that time she was on HEAVY duty antibiotics, 2 of them to be exact. Then she was sent home & put on antibiotics for 2 weeks. She was fine after that.

HUGS to you all! I know how stressful this is & I’m keeping my fingers crossed Ryan gets over this ASAP & can get back to walking.

Kelly

My prayers are with Ryan and his entire family….

HI Ryan’s Mom!
My heart goes out to you with all you and Ryan have been through. Please know that I am sending prayers and good wishes your way!
I can only expect a good outcome with all the care and concern you’ve given to Ryan.

Wow i am so sorry Ryan is going through all of this. I will definately be praying for him and your entire family. I am new to all of this and everyday i learn something new about this disease. I didnt know symptoms could be so severe! Take care!!

So sorry to hear about Ryan’s set back but I’m sure after he recovers from this and he starts the cytoxin he will be up and running with all the prayers being said for him and you.

Rhonda, Prayers are being lifted for Ryan, you , your family, and for the skill, knowledge, and wisdom of Ryan’s docs. Gary

Hi Rhonda,
It sounds like you guys are turning the corner!! We will say a prayer.
Dawn Kevies mom

[QUOTE=Rhomcc]He is still in isolation but he is getting better. They are still giving him IV antibotics as the bacteria he tested positive for is a new superbug that tends to be resistant from antibotics but the two they hav ehim on is doing the trick. They do blood cultures everyday and he has been testing negative the last 2 days so it looks like he maybe getting over this.

He is scheduled to go down to radiology later this morning to have a vas cath placed so tehy can give him 2-3 more Plasma pheresis treatments this week before he leaves the hospital.

They said he will probably start chemo end of month or eginning of next month. they need to make sure he is recovered from this blood infection first.

Thank you all for your continued prayers and encouraging words.

God Bless all of you

Rhonda & Ryan & family[/QUOTE]
Hi Rhonda

Just wanted to say best wishes for Ryan. Dreadful at such a young age.

God be with you- right now.

John ( UK)

Please keep us informed. I will definately keep you in my prayers. I have been following Ryan’s story and visit the sight frequently and always keep
everyone in my thoughts. Ms. Judy

It is really nice to see a picture of Ryan so that we know what you are talking about. By the way, he is extremely Handsome. We often pray for Ryan when we do our family devotions at night. I hope this works for him and he can go back to being a normal 20 year old and get married and have children and everything else that he should be looking forward to. Keep us posted. It is hard to see our childen suffer.

Hi Rhomcc and Ryan,
I am so proud of Ryan and I have nothing but admiration for the both of you for the way you have handled this tremendously difficult journey.
I am certain in my heart that all the prayers, concern and support coming from everyone in evey direction are leading to bigger and better things for Ryan and your whole family.
Sending more prayers and blessings!

Hi Rhonda,
I hear the hope in your words. Things sound like they are going in a forward direction. How great he is keeping up w/pt, because when the cytoxan starts working, he will be ready!! Sometimes I get mad, sad, pissed. Just the other day I was thinking, What do I have to be thankful for? Posts like yours and hearing Kevie right now having fun with his friends while playing xbox live refresh my memory. We have lots to be thankful for. Keep us posted!
DAwn

Hi Ryan and Rhonda, Had my 3rd Cytoxin treatment slightly over two weeks ago. The last one made me feel quite crappy, compared to the other two. I enjoy(live for?) good strong coffee in the am. On Saturday following the chemo, my wife knew I was feeling side effects when I skipped my coffee! Then the next day, a lucky niece got my ticket to the Packers/Cowboys game. Was the Cytoxin worth it??????????????????? YES. In conjunction with the Cytoxin, I recieve the PE weekly. Well after 15 years of getting stuck with needles, I now know what a needle stick feels like! It ain’t fun either. This is my best sign that my nerves are getting restored. Given all I’ve been through, I have been stronger since September and am looking forward to this Winter and 3 to 6 more Cytoxin treatments in the coming months.
So all in all, a little short term discomfort now, and watch out later. Boy is my buckets list growing with options!

Rhonda-
I’m very glad to hear Ryan is up and walking.
Was that just with the prednisone? (or pred combination with something else?)

I hope the other med really does it for him!
I’ve heard wonders about it.

I had to go back into your early post to understand how far he has come. I am so happy he is improving. it sounds like it has been a long year for you and your family.

Hi Rhonda,
I have been meaning to write to you about Cytoxan, but haven’t been in great shape the past few weeks.
But now that it is coming soon for Ryan, I want to tell you all about it-
the good and the bad. I have been on Cytoxan for over 2 1/2 years now.

First, he will most likely be admitted to the Oncology Ward for a full day.
(Yes-it takes a long day–I get admitted at 9am, and usually leave at 7pm.)
I have been at the maximum dose of 2000mg whenever possible, (this all depends on each months bloodwork, as if your white blood count goes to low, {anything below 3.8) or your Absolute Neutrophils go too low, (anything below 1500), your dose for Cytoxan gets lowered for the next month’s administration).
Does Ryan have a port in? If he doesn’t, your doctor should arrange for one, since it makes life so much easier with a port in, for the infusions.
For the first two hours, they will load him with fluids, (D5 1/2 N.S.).
It is important that over the next three days, he drinks LOTS of fluids.
If you are a concerned mother, (as I know you are), then ask the nurse for a copy of the orders faxed from the doctor. Every once in a while, something might get missed, and having been doing this for so long, I know to make sure EVERYTHING is on the order sheet, as if something is missing, then I tell the nurse, and they simply call the doctor to get the correction.
You should show on the order sheet:
-D5 1/2 N.S. @ 200cc/hr x 2hrs
-The dose of the Cytoxan, such as I get 2000mg
-Messna at a dose to match the Cytoxan, (to match my 2000mg of Cytoxan,
I get 1000mg of Messna), IV pre-Cytoxan.
-Messna at the same dose, IV post-Cytoxan
-Zofran 32mg IV
-Decadron 6mg IV, (or your doctor may opt for a different steroid)
-Port flushed with Heparin.
—
Now the reasons for these other meds with Cytoxan:
-Cytoxan is extremely harsh on the bladder and the kidneys. Messna is used
to protect the bladder and kidneys. That is why they give it before and
after the Cytoxan infusion. This is also why it is important that he drinks
lots of fluids over the next three days.
-A side-effect of Cytoxan is nausea. Most doctors will infuse 32mg of Zofran
with the Cytoxan administration. And will usually give you a prescription to
take at home, but usually only 4mg or 8mg per dose, every 6 hours as
needed. I also have another anti-nausea med, Tigan 300mg, that I can
use in-between the Zofran doses, if I am real nauseous.
-The Decadron or steroid is to assist with any inflammation.
-And after all meds have been infused, they usually hook me back up to
the Normal Saline bag, and finish out more fluids, as I said above, they make
sure you get plenty of fluids.
This lasts all day long. I go to a very good medical center, and all the nurses know me there on that floor. But, do double-check yourself that nothing is missing on the order sheet. The nurses do not mind if you question something.
—
Now, when he gets home, for the next three days, every time he goes pee, it is important for him, (or if he has assistance from you), that you take some toilet paper and wipe the rim of the bowl and throw it into the toilet. Then flush the toilet twice. Then wash your hands vigorously. The nurses taught me that–he will have a toxic chemical in him. And of course it has to come out of him–in his pee–so, if it gets on your hands, you must wash them well. The nurses said that wiping the rim each time will not let anyone else come into contact with the toxic chemical. And they said the second flush makes sure it goes down the tube for sure.
—
Now, Ryan is going to have some good months and some bad months. First of all, the first day after chemo, he will usually feel totally wiped out of energy the whole day. So, he should never make plans to do anything that day. Just get lots of rest. The good months is when he will have little or
no nausea. The bad months is when the nausea is there–but that’s why you should have prescriptions at home for him. My first year of being on Cytoxan, on a bad month, I would be nauseous for maybe up to a week after.
Now that I’ve been on Cytoxan for so long, I get the nausea for 4 weeks,
right up to my next infusion, and I am losing a lot of weight. That is why my doctor is pushing me to take the Marinol now more often, (that is the pill form of Marijuana, which takes the nausea away and increases the appetite).
—
Next–EXACTLY 10 days after he gets the Cytoxan infusion, he will have to go and have lab work drawn. Usually a CBC, CMP, SED RATE, and CRP.
This will all tell the doctor what the next Cytoxan dose will be, with the aim of watching the white blood count and Absolute Neutrophils. Don’t be too worried if his red blood count runs low too, as if that gets too low after a long time, then they just give him a couple of units of blood–but that rarely happens.
—
Cytoxan will work very well for many people, and for many people, it will put the CIDP into remission. For me, it was a last-ditch-effort. I did not put me into remission, but it slowed down my progression of the CIDP. Before I went on Cytoxan, three years ago, two of my doctors said I had about two years left to live. Then I went on the Cytoxan, and last year, my neuro told me that he thought the Cytoxan added about another two years of life. But there are risks involved with Cytoxan–too much destroys the bone marrow.
And I knew that ahead of time, as now my blood labwork is coming in way low. But my choice was to either let the CIDP run fast through my body and I die of that, or to use the Cytoxan for this long, which slowed down the CIDP alot, but that now it is wiping out my bone marrow for being on it for so long. At least it gave me more time.
—
So, Rhonda, I hope I was able to help you know what to expect, and I do hope this will work WONDERS for Ryan. But I had to tell you both the good AND the bad with Cytoxan. And as I mentioned above, ALWAYS ask to see the orders faxed over to them, as I have caught it twice where something was accidentally missed on the order sheet. Accidents can happen.
Take care,
Ken
(KEDASO)

Ken,
How kind of you to give such a detailed explanation. Saving others with info you have learned in order to spare them is a true act of human compassion!
DAwn Kevies mom

Hope Ryan can get appt with hemotologist real soon so the cytoxin can get started. Sounds promising keep us posted.

I hope everything goes well for him. you cidp moms are something. I applaud your strength.

I am so glad that Dr. Lewis understands how much Ryan wants to be better than he is, as good as he can possibly be. I remember telling Dr. Parry, I wa crying actually, that I couldn’t live like I was. We had tried IVIG, solumedrol, & Plasma pheresis for 10 months without any lasting improvement. I couldn’t walk & had no real use of my hands. He understood & I believe he felt my pain. That’s when he suggested Cytoxan, I said Yes right away to his plan. I am glad that Ryan got to see a specialist in the field of CIDP; I am so happy about that, please keep us posted.

[B][FONT=”Century Gothic”][SIZE=”2″][COLOR=”Sienna”]I can only echo what the others have said … Please keep us posted.

Many supportive thoughts are going your way and Ryan’s way …[/COLOR][/SIZE][/FONT][/B]

Rhonda,

I am so happy to hear that Ryan’s treatment is getting results … every little thing that is forward movement is so very encouraging … even if it’s a butt raise!!! 😀

Thanks for the update – look forward to hearing more great things!!!!! Please let Ryan know we are pulling/praying for him (and you).

Hope today brings much more toe wiggles!

Rhonda,

So happy to hear about the progress! Keep us updated.

Woooo Hoooo.. good for you Ryan. Keep up the good work.

Keep us posted Rhonda

Sounds pretty good !! I am so glad that there is good progress.

Great news!
Dawn Kevies mom

Great news and my prayers are wth you all…

I am very glad there has been some strength showing. I am hoping the PP will work for Ryan. He is WAY too young to have to deal with this.

I wrote a post to you two. Keep up the faith that the PP will work. If ever you want to contact me, me email address is:
[email]vip-tvlrs@algxmail.com[/email]
If you ever have an questions on meds, PP, or anything else, just give a shout! I’ve been through it all…

All the best,
KEDASO
(Ken)

That is the best news! I am so happy for both you and Ryan. Keep up the great progress!!!

Rhonda – that is outstanding (every pun intended) news!!!!! Tell Ryan I will be looking for his name is a marathon next year! Please keep us posted – it always is so wonderful to read good news. Thank you!!!!!