Granddaughter Has WG

[Sangye]

Sangye,

I would like to copy and paste your message into an email to my daughter. Would that be ok with you?

Cindy

Of course!

I agree with John that they might really need help from you because they're on overload. I was diagnosed as my doctor drove me to the hospital. All I knew about Wegs was what they told me. They weren't Wegs specialists, so it was pretty inaccurate info.

I didn't have computer access for months, and none of my friends did internet research the way I would. I didn't know of this group for 2.5 years! I was completely shut off from information that would have helped me tremendously. I was so overwhelmed with phone calls and visitors, I couldn't ask for help. And, I could barely function being so sick and weak.

It may be difficult for them to ask for your help. It's best to just offer it.

So please share what you've learned with them in your computer travels. You can repackage it to be easy to read. Ask if they need/want it-- would it be helpful. If they're not ready, hold onto it--they will be soon, I guarantee you.

Meanwhile, keep collecting info. It's necessary to know everything you can about Wegs. Judging from many of our experiences, you might save Katie's life.

[coffeelover]

Dear Cindy,

I am sorry for you and sorry for Katie having such a devasting illness at such a young age. I know from experience as my neice suffered from a rare liver disease when she was 7 years old and went through what no child should ever have to go through for the next few years.
I hope they can take care of her sinus problem soon, so she can feel like she can breathe. I too suffer from the sinus problem to some extent and have tracheal stenosis and a trach in to help me breathe...all due to WG.
Sangye is right...we want you to get treatment right away, as soon as possible, because the sooner she gets treatment the quicker she can get in remission.
I too was afraid to go on the Chemo drugs, but you have to do what you have to do. Hopefully her parents will get some consults and options for Katie and as a grandma, I would encourage you to stay inovolved and pro active. YOU may be the only one thinking rationally at a difficult time like this. I know from our family experience, that "grandma and grandpa" were what got my neice through the toughest of times and their support of the parents was a much needed avenue of healing for all.
Best of luck and keep on chatting with us.
Lisa Coffeelover

[andrew]

Sangye,

I would like to copy and paste your message into an email to my daughter. Would that be ok with you?

Cindy

I'm sure I can speak for Sangye when I say go for it.

[andrew]

We use Sustagen for people that need to eat but aren't up to solid food. You probably have same or similar there. Check here for what I mean: http://www.sustagen.com.au/

Regarding the biposy, they'll probably just pick one area i.e. sinus, lung or kidney to biopsy rather than all three I would have thought. Probably they'll do the sinus as I would assume it would be the easiest to get to. I would also think that they would have started her on Pred at least by this time?? They are doing the right thing though in getting a proper diagnosis via biopsy.

Agree with Sangye that a Pediatric Onc. is a must-do ASAP if one hasn't already been summoned. He/she will know what's best for someone so young.

Thoughts and prayers are with you, your Granddaughter and the rest of your family.

[Grandma2Katie]

Thank you all so much for your responses. I'm not getting anything from daughter & son-in-law at the moment. I did copy Sangye's post and sent it in an email to them. All I can do at the moment is send them info. It is very frustrating from this end. I'll let you all know when I hear anything new.

Cindy

[Grandma2Katie]

Just got an email from my daughter. They have had a very rough weekend with Katie: nausea, vomitting, fever. They have gone ahead to Charlotte tonight because the appt. in the morning is at 8:30. They are seeing a pediatric oncologist/hematologist. I am praying that he will admit Katie to the hospital until they can conclude her tests and start her on meds.

Laura, my daughter, did reassure me that they will address the fertility questions with the doctor. Right now though, they are very alarmed at how fast Katie is going down hill. Any of you so inclined, I ask for prayers for Katie. We are all worried sick about her.

Once again, many thanks to all of you for sharing your information. I am passing it along to my daughter. Perhaps when things settled down a bit, my daughter will be able to join.

Blessings to all,
Cindy

[Sangye]

I will certainly keep Katie in my prayers. This is so troubling to hear.

I think they have to admit her to the hospital. Her parents need to be firm about it, and not just hope that the doctors will do it. You might be the only one who really understands how serious Wegs is. Please tell them to insist that she be hospitalized and that a biopsy be done immediately. Any procedures happen faster if you're hospitalized, rather than an outpatient. She's lost so much weight, she has no appetite, and now she's vomiting, too. She needs to get on IV fluids and get nutrients in her. I'm not even going to apologize for sounding bossy--this is serious business and she's heading downhill.

Most often pediatric specialists do a good job with things like this. But there are many cases where they didn't, and the child was put in jeopardy as a result. It happens more frequently with Wegs, because so many of the symptoms can be attributed to other things.

Hang in there, Cindy. I'll keep checking in with you.

[Grandma2Katie]

Thank you Sangye. I will call Laura early in the morning.

Cindy

[crackers]

hi cindy.i agree with sangye that katie needs hospitalisation so that her condition can be monitored closely.she sounds to be in decline and this needs addressing immediately.you're all in our thoughts
john.

[Grandma2Katie]

We got very bad news this morning. Katie was rushed to Presbyterian Hospital this morning at 2am. She is now in the pediatric ICU. Her lungs are bad and her kidneys have shut down. She is receiving fluids and blood transfusions. Doctors are being called in from all over the state to help. She will start cytoxan today.

Cindy