Granddaughter Has WG

[Doug]

...and it is plasmapheresis! That is the procedure like dialysis that your granddaughter had. It was developed through research done by MDA funding. When I researched it, discovered it was MDA money that helped make it possible, realized that I, in a sense (and at age 55, then), was one of Jerry's kids, I bawled: it saved my life! Drugs weren't pulling me out of severe WG, which I had ( and your granddaughter has), but dialysis, then plasma pheresis did. I was on dialysis for a week, had a day off, then had dialysis followed by plasma pheresis, a day off, and a final shot of dialysis followed by plasma pheresis. It is painless, though, my heart goes out to your granddaughter, your family, and you because the all of the preparations getting to the painless part are, no doubt, scary to a child, perhaps even a bit painful. You've been given excellent advice so far. I'm particularly glad you made contact with the Vasculitis Foundation, and that they've given you good support.

[Sangye]

Hi Cindy,
These first couple weeks are some of the toughest times you'll have. Katie went from a healthy child to a very sick one overnight, and it will take all of you awhile to get your minds around it. And since Wegs is a chronic illness, it's a whole different thing. Right now is the time for gathering info and getting her started. Once the dust settles a little, you will all (including Katie of course) have some grieving to do. Because this is like a death--losing the "dream" you all had about Katie, which certainly never included something like Wegs. If you lean towards such things, finding a good therapist now will help you in the months ahead. It has kept me alive to share that.

One other thing : It's possible the hospital staff will tell Katie's parents about CaringJournal, but just in case.... It's a free website service from a non-profit that provides ready-made, very easy to use templates and hosting for people like Katie. The basic idea is to save you from having to call/write/email everyone with every update. You can write a daily journal entry, put Katie's story, announce and organize fundraisers, post pics and videos of her, etc.... Loved ones can send messages in a guest book to keep in touch, too. You can even keep changing the template with a click for different holidays, etc...

I don't use it myself--wish I'd known about it in my early very overwhelmed months, though. I keep up with many friends via theirs. Anyway, the link is
CaringBridge. Free Websites That Support And Connect Loved Ones During Critical Illness..

Be well,
Sangye

[Lotte]

Hi, cindy i was 11 yrs when diagnosed with WG. Obviously all my parents could think about was getting me well again. Naturally everything else came second including whether or not i could have children in the future. I went through the menopause at the age of 22 probably due to chemo. Everyday my husband and i miss not having children. Life goes on and we do not dwell, we love our dogs instead. Katie is a lucky girl having you to look out for her. If you can give Katie the choice of having children in the future, it could mean a lot. Things were different in my day and my parents were wonderful and strong for me in fact i never knew how ill i was thanks to my parents, i just thought i was a super star. I really don't know how my mum did it but we just laughed through the good and bad and thats what i remember the most, the laughter. So its not all bad. Try and keep smiling, i know it's hard.

[Doug]

Sangye is right. This website is probably the best way to keep everyone interested in your granddaughter's progress informed. You don't have time to make all the calls you'd need to make or take all the calls you get without this sort of help. It certainly will reduce stress and save you repeating the same thing over and over. When I was at my worst and my friends and family were their least informed about my disease, the last thing I wanted to do was talk over the phone to let them know what was going on. I didn't have anyone to do this for me. It was very, very, very tiring.

[Grandma2Katie]

Doug, what a beautiful prayer. Thank you. It is a comfort to know that Katie's family has grown to include such wonderful, caring people.

Cindy

[Grandma2Katie]

Lotte,

I wish treatment could have waited long enough to address the fertility issue but Katie was critical when she entered the hospital. Her parents were aware of the fertility issue ahead of time. We all thought that saving her life was more important.

I hope Katie will grow up, marry and have a family like my parents did. You see, I was an adopted child, a very lucky adopted child. So even though she will not have the option to have her own children, she can still have children of her own.

Cindy

[Grandma2Katie]

Sangye, what a great idea. I will check it out. It would save a lot of time, especially for Laura and David. Thank you for the suggestion.

Cindy

[Sangye]

Cindy,
I spoke to a friend whose daughter underwent chemo for a rare cancer which began at age 3 and metastasized within a year. She had cyclophosphamide-- probably the same chemo Katie is getting--but of course at the "cancer" level. She had many, many rounds for months. Her docs occasionally did imaging studies of her ovaries to check the size (not sure what/how). Hers actually grew during the process, so the docs believe she may have retained her fertility. She is strong and vibrant today--no sign of cancer or anything else. I see her and can't believe she's the same kid.

I say this so that you won't think it's a done deal. Anything is possible. Little bodies do heal.

And like you said, either way she can be a mommy with children of her own.

[Lotte]

Unfortunately in England someone with WG isn't fit to adopt a child. Not where i live anyway but i know we are sometimes a bit behind the times, other areas may not have come across this problem. I didn't lose my fertility until (they think) my 3rd cycle of Cyclophosphamide which i had over a few years. I was in Great Ormond Street hospital for a year before i was diagnosed with WG. I had been in quarantine at my local hospital 3 months prior. I hope things have changed since my day!

[Grandma2Katie]

Just spoke with Laura. Good news! Katie may be able to move out of ICU tomorrow!!

They are keeping her more of less sedated to try to keep her blood pressure down. The first para paresis (?) was done today with another scheduled for Friday and Sunday.

I passed on all the hugs and well wishes to Laura and asked her to give Katie a giant hug from all of you wonderful folks.

BTW, thank you all for the birthday wishes. I have gotten the best birthday present of all; improvement in Katie's condition.

Cindy