Sunday, December 9, 2012

We Made It - Again - Another Community Effort

Here we are, halfway through Lance's second IVIg!!!

We made it and we are so grateful, I am so filled with gratitude and appreciation.

I am doing the transfusion myself, here at home, on my own child; I am doing the nursing and medical care. Because I CAN. It is saving us a couple thousand $$ in infusion costs for me to do it myself. I don't doubt that any mom that had to do this, would do it in a heartbeat if they could, if it would help their child. I am blessed.

A total of 100 grams of Gammunex, 35 of which were donated by a loving PANDAS mom whose own child struggles for stability. Seven grams I had in my office as a compilation of donations here and there to our PANDAS treatment program, and I've been giving them away to parents that need it, and I just thought - hey, we need it!!

Another $1000 was donated by Diana and Don Pohlman out of the goodness of their hearts. Diana is the head of pandasnetwork, THE foundational thinktank and voice for PANS/PANDAS awareness, provider collaboration and parent education / advocacy. Thank you to Diana who has given countless life force to this brilliant effort for years despite and because of her own family's struggle with this illness.

The rest we have been able to pull together. During the infusion yesterday, which was scary at first - now I'm more confident about today - our very dear and special friend Sue who is Lance's other godmother and also watched him be born - spent the entire day with us just to be here so we feel safe. Thank you so much!! Sue is a bit of an enigma - fierce and fragile all at the same time; a warrior who is dedicated to bringing awareness to this earth about balance and using the earth and inner Guide for healing and transformation. A beautiful loving woman.

And, our dear friend Ana who has shown up as an honorary godmother in our lives, has been feeding us and watching out for me and for Lance and warming his feet and taking care of us with oils and hydration and nourishment and goodness, along with her beautiful partner Chris. I don't know how to thank them for their kindness and love.

But wait - there's more!!!

Lance's school community, Sonoma Academy, that has been so foundational to our world and Lance's incredible success and development as a student and athlete and overall individual - has been showering us with food and love and calls and community.

The PANS / PANDAS network of MOTHERS - who knows where I would be without them? Who knows where we would be without each other??

Hill Park Medical Center - Sunjya, Brian, Jen, Denise, Justin, Josh AND all the office staff who love Lance and me and support and care for us - OMG, we'd be in a psych ward somewhere without you. Literally. Lance WOULD be in a psych ward along with the perhaps hundreds of other mis-diagnosed PANS/PANDAS children who are smothered with psych meds and therapies instead of antibiotics, anti-inflammatories and IVIg.

And my local community of Sebastopol moms and families, and the dhyana Center practitioners, without whom we would have never had Lance's first treatment, and especially Carolyn, Joelle and Judy - THANK YOU again for all you did to create and pull off that incredible breakthough fundraising event, hard to believe its been two years since then! And Louie, who will run over here at any hour of the day or night to help us with anything that ever comes up.

Last but never least - my dearest Sisters, Family and Friends who listen day in and day out to me whine, freakout and celebrate over Lance's illness, our family struggle and personal ups and downs. BRAVO, thank you for hanging in there and for being so generous with your humanity. And to family members who have come and gone, I feel the presence of my parents, my step-mom, and my grandparents, all of whom would have done anything to support us and be here for Lance, and we miss them.

And now, we're off to Day 2 of IVIg.

p.s. one thing I've learned and would like to pass on is to warm the saline just a bit before the infusion - its a lot of hydration and the liquid is cold at room temperature, especially for children!!!