my daughter Lydia

[Lisa Goble]

Lyd was diagnosed with aHUS in July of 2008. She was a normal (well, sports-minded CRAZY dangerous) kid till one day and then wham, we began our nightmare. She was adopted at birth and partial medical background did not prepare us for this journey. Actually, now after living this life, i wonder how anyone can prepare for watching their babies and beloved kids be the strong ones and go the biggest battles of their lives. Her journey (our nightmare) can be read at www.caringbridge.org/visit/lydiagoble. She was hospitalized 47 days with diagnosis and first relapse. She underwent 6 surgeries, peritineal dialysis, several rbc transfusions, several transfusions of platelets, kidney biopsy to get diagnosis, plasmapheresis, has had transfusions of ffp and plasma. (Um hello.....We are a normal family, she has an adopted brother named Josiah, now age 12, I am a hairdresser, and her dad works for a bank....this "stuff" doesn't happen to people...especially normal people like us....know what I'm sayin??!!) She got an infection in her plasma line in her chest that went septic and resulted taking out her central line last late September. Since then, we have remained in what they call "remission", thank you God. We have monthly test run: CBC, renal panel, Haptiglobin, C3, LDH, and occasional creatinine check on urine, and ret count. We test Oct. 5....therefore here i am writing and updating, because this is something i can control :) as i am starting to "wig-out" a little. She looks good....you have all been here, I know. This disease does not give us as parents or friends of a loved one with aHUS a break....EVER...it is on our minds and in our hearts every day. So we pray. ALOT!!! So...here is her story if your interested in the details....like many of your stories, it is long and full of a childs fight....have the kleenex ready! We are thankful that the remission period is being monitored so closely by our doctor whom we love. Lyd takes folic acid, prescrip pepcid, multivit with iron, norvasc, and labetalol. We watch her BP, intake of water, and protein. I will update after i find out labs on monday. This child is a gift...she was given to me for a very special reason....that must mean that this is something that i can handle, eh?:) I tell myself this daily, as well as Jeremiah 29:11..."For i know the plans i have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future." (Sometimes, He thinks I am WAY stronger than I think I am....and i know you're with me on this one as well...) Thanks for your time....I am praying for a cure in our kiddo's lifetime.

[Cheryl Biermann]

Hi Lisa, thanks for helping me out with the caring bridge, I enjoyed the pictures as well, she must light up the room with that smile! Hope your labs were great yesterday.

[Linda Burke]

Howdy Lisa,
Thanks for adding Lydia's story and for sharing your family's strength with us. I've visited your Caring Bridge site after "meeting" up with you via FaceBook and have enjoyed seeing the beautiful photos of your family (lots of action shots ;D ). Lydia's terrific spirit shines right through the photographs! Wishing you the best on Oct. 5th for labs that indicate continued remission status for Lyd!