Prayers for Tiffany

[vandie]

I work with a woman whose name is Kim.  She has twin daughters who are 11 years old.  The girls' names are Tiffany and Taylor.  Both Tiffany and Taylor have Lupus, two different kinds, forgive me for not knowing Lupus well enough to recall the names of each.

Tiffany was diagnosed about 18 months ago and underwent chemo and a plethora of drugs, including high doses of prednisone.  She finally was able to go back to school with occasional bouts of pain. In November of last year, Taylor was diagnosed as well. 

On 1/26/09 Tiffany was hospitalized with kidney failure.  They dialyzed her once and gave her huge doses of prednisone hoping that it would bring her kidneys back in check.  Unfortunately, this did not work and she has been doing dialysis every other day for the last week.  She will have surgery to place a fistula soon.  She is still in the hospital but out of ICU.  Kim is hopeful that they will get to come home soon and do outpatient treatments at Loma Linda, which is the closest hospital that does pediatric dialysis.  Loma Linda is an hour-and-a-half from Kim's home and almost two-and-a-half hours from where we work. 

If anyone has any insight that I can share with Kim, please let me know.  Dealing with this disease as an adult is tough enough, but being a child -- well, I can't fathom it at all.

Please keep my friend and her precious girls in your thoughts and in your prayers. 

[willieandwinnie]

vandie, that is so heartbreaking. My thoughts and prayers to the family. 

[Tinah1968]

  I am so sorry to hear that it is hard to accept it as an Adult but to see a child have to go through it is terrible.

[paul.karen]

No insight but i have plenty of prayers i can send along.
And i so agree.  When it is a child it is heartbreaking.

[rose1999]

Prayers and love to Tiffany and her family 

[drinkboy]

nobody, especially a child, should have to go through dialysis and all that comes with it; that is such a heartbreaking story and my thoughts are with Tiffany and her family.

[aharris2]

  for your friend.

Vandie, a comment on the practicalities - the 1 1/2 hrs and 2 1/2 hrs are going to be difficult to deal with. Are there home dialysis modalities available to a pediatric dialysis patient and her parents?) Or even night in-center (probably not in an outpatient hospital setting? Best wishes to the family, so difficult for anyone, especially a child.

Alene

[Romona]

  My prayers are with the family.

[kitkatz]

I PMed you.  Let me know what things she likes, what books she reads, what colors, etc.  The foundation I belong to may have a way to get a gift basket to her. Does she or her mother need anything right now?

[monrein]

I'm so sorry that this family is having to deal with this.  My thoughts are with them. 

[cris]

if offer lots of prayers for Tiffany and Taylor and their mother. 

love,
cris

[pelagia]

sounds very difficult for this girl and her family 

[paddbear0000]

What about doing PD? Children are able to do it. This might help--http://kidney.niddk.nih.gov/Kudiseases/pubs/childkidneydiseases/treatment_methods/index.htm#2. There is info on the page about PD for kids.

I will keep her in my thoughts and prayers. It must be extra rough as a child. 

[Sluff]

 

[okarol]

So tragic. Please let me know if I can help, I am happy to - anything. 

[vandie]

Tiffany is having surgery today at Loma Linda to install a permacath.  This little girl has been through so much already.  Thank you for the thoughts.  And thanks Kit for the attempt at a basket.  The thought alone is lovely.

Alene, as soon as things calm down, I will sit with Kim and discuss the other options.  She's overwhelmed and I'm trying to let her absorb all of this BS that is kidney disease.

xoxo

[paris]

You are a good friend, Vandie and you will be a great help to this family.   It is so hard to think of children having to go through this. I'll be saying lots of prayers for the whole family.  If you find out any special needs they have, post them and I bet we could all help.   Hugs for you and for your friend.   

[jessup]

 
Lots of love and wishes to the girls and Kim
What a wonderful supporting friend you are
Good on ya mate

[Rerun]

If it is any comfort, Loma Linda is probably a great transplant center and kids are listed first.  I hope and pray things settle down for this family. 

                         

[Bajanne]

This really is heartwrenching that Tiffany would have to deal with this at this age.  However, children can sometimes prove to be more resilient than us grown-ups.  I do hope she is able to find some special strength to help her through all of this.  Our caring thoughts and prayers are with her.  Please let her know that there is an international family rooting for her. 

[kitkatz]

I am cooking up something special for those girls.  Anyone want to help?

[willieandwinnie]

What are you up to kitkatz?

[pelagia]

I am cooking up something special for those girls.  Anyone want to help?

Let me know what you have in mind.  I will help if I can.

[vandie]

An update on Tiffany and Taylor:

Tiffany is having dialysis at Children's in San Diego three times a week.  She's feeling like crap and they are contemplating changing her status from acute to chronic. . . . ./
She isn't ready to talk about a transplant yet.  She's one scared little girl.  Her creatinine hovers around 5.  Here mom is just trying to keep things balanced.  Again, she is one of the strongest women I know.
Taylor is still unable to go to school.   Both of the girls are hanging in there and are troopers.  Please send your positive thoughts to the family.

Also, if we have a member with a child around the age of 12 that is battling with illness, I know the girls would love to have a buddy who understands what they are going through.  PM me if you do.

Thank you Kitkat for putting together a basket of goodies for the girls.  You are amazing.  xoxo

[paddbear0000]

TeenHatesDialysis's daughter Jaclyn is 14. I bet her daughter would be thrilled to have someone her age to talk to about this!
 
I'm sorry she is having such a rough time. I'll keep her in my thoughts and prayers.