arianddannie

THANK YOUs & Update, end of 2013 and mid 2014

In Uncategorized on August 3, 2014 at 9:41 pm

Thank you to the LymeLight Foundation and to Harvest Christian Center Redwood City for providing grants, Yoga of Los Altos, Crossroads Fitness San Mateo and Montgomery High School Santa Rosa class of ‘73 for holding fundraisers, Salon Kavi in San Mateo for nurture for Kate! and numerous individual donors which enabled Dannie’s and Ari’s first life-saving human embryonic stem cell transplants (HESC) in 2012, Dannie’s trip to Hansa Center and Ari’s return for HESC in 2013.

 Thank you from  Ari and Dannie ~ Mid 2014 Update

Thank you for your ceaseless generosity!  All that you have given so freely means more to me than words can convey, without which I surely would not have survived. Thank your furthering my life and increasing ability to enjoy it. My once intolerable pain has become more manageable, as well as lessened intensity of my other myriad symptoms (like nausea, total exhaustion, migraines, insomnia, myoclonus, sweats, vision and hearing problems, heart symptoms…. ). While I am still in bed most of the time, I can now rest without the concern of impending death or further loss of ability. I am still fighting for healing and have a ways yet to go in this journey to wellness, yet I now know that with the love and kindness you have granted me, I will make it. Thank you for becoming such a beautiful part of our extended family.          With love,     Dannie       (February 2014)

 

I cannot thank you enough for your game-changing support of my medical care/treatment!  Having recently returned from stem-cell treatment in New Delhi, I am stronger and healthier than I have been in over a decade.  Not only do I feel so much better than before, my Spect scans also show a dramatic transformation in my brain.  Head of Nutech Mediworld (where I received a total of 4 months of treatment), Dr. Geeta Shroff, has told me that with the exception of being re-infected with Lyme, I should not require any further stem-cell treatment, and can resume life as “normal.”  Unthinkable even a few months ago, I am now using the gym 3-4 times per week. This experience has been truly miraculous!  Without the blessings and support from you and your donors this would not have been possible, certainly not now.  For this I am truly grateful beyond words.  While I am cautious not to get ahead of myself with all of my physical improvements, I am very excited to begin the process of adjusting to greater health, strength, stamina, and a virtual absence of symptoms as I learn how to build a full and active life!            With gratitude and sincerity,     Ari Steele-Baker  (December 2013)

 

The Steele Family finished 2013 with such a mix of experiences—challenges and victories — which continued into 2014.

In February the Steele Family moved, after having discovered mold in the home they lived in for 12 years, and being notified that the owners would be returning to live in their house. Happily, and quite miraculously, they were able to rent a home in San Carlos which was aggressively competed for by many applicants. It is very near where they had lived as young children, and the town that feels like “home.” Ari was able to move his dozens of plants to the new home, and their faithful companions, dogs Lily and Wesley who have been by their sides for the past decade, were accepted!!!

2013 ari birthday eating cake 2

Ari’s birthday in New Delhi for stem cell transplant, October 17, 2013

WIth improved health, Ari was able to return to school and his love of photography.

WIth improved health, Ari was able to return to school and his love of photography.

 Ari is amazingly well— and has continued to improve, going to the gym, and enrolling in school full time. His first quarter back at school after returning early November 2013 from his second trip to India to receive Human Embryonic Stem Cell Transplant he was welcomed into the home of family friends, as he could not return to the house in Belmont which was found to have mold. He he took a photography course and produced an impressive portfolio, finding a passion for photographing nature. After so many years stuck inside, he could not get enough of the outdoors. He began working out at the gym for the first time on a regular basis and resumed gardening, another passion. This last quarter, a full time schedule of academics proved to be too demanding at this stage of his healing (with some remaining physical and neurological challenges) and precipitated a threatened relapse, with a return of symptoms he had not experienced since his transplant in the fall.  He quickly addressed this, and is recuperating with a report card filled with A’s this summer (three A+s and an A to be exact!!!).  A 26 year old, feeling literally dropped into a body that is functioning reasonably well for the first time since the age of 12, he is challenged to figure out how to fit the pieces of his life together. Anxious to be in the stage of life reflected in his mid-late 20’s peers, he is exploring how to forge a path between here and there… profound gratitude, with some angst and impatience!!!

Dannie and Dr. Jernigan 2.21.13

Hansa Center with Dr. Jernigan 2013

 

 

Dannie continues to press forward. After realizing significant gains from HESC transplant and two trips for treatment at the Hansa Center in Wichita, Kansas during 2013 to continue to strengthen her body in preparation to return to continue HESC, she returned home excited to share her new found improvement with friends and family. She was up, WALKING and making it to appointments DRESSED five days a week!!!

2103 peninsula imani

End of 2013 a month in the hospital and beginning of 2014 repeated visits to emergency room.

In hindsight this proved premature, as taking a hiatus from the daily treatment at Hansa and traveling home seemed to precipitate the return of her most onerous symptoms. She essentially became bedbound again, and experienced several more bouts with out of control pain (hospitalized for a month in October 2013, and then seventeen trips to the emergency room between March and May 2014), followed by a three week episode in May-June of medication “poisoning” of sorts, induced by a combination of medicines and her body’s reaction to them, which was extremely difficult.  She is continuing to fight valiantly, (dedicated to her healing protocol of supplements, meditation and restricted diet) experiencing complete indescribable exhaustion. In between she was able to push and push and manage a few trips out, on Mother’s Day to a LymeLight gathering where she met people she has know of for years, but never had been able to meet, and to a movie for the first time in what seems like forever. She is now undergoing an assessment at Amen Clinic that we hope will illuminate, through two spect scans, what the presence of Lyme is doing in her brain, and how the improvement from her first embryonic stem cell transplant is coming along.

Insistent on moving forward, Dannie contacted the home teacher who she worked with in High School, and asked her to resume visits with her. While all visits are bedside~ often Elana reading to her and sharing current events~Dannie has begun to read some, pushing through visual and cognitive challenges. Her isolation is excruciating and she is fighting to remain  hopeful and endure through daily and constant pain of an 8 on a 1-10 scale and a myriad of other symptoms which keep her in bed 90%+ of the time.

Dannie has seen, firsthand the amazing healing that Ari experienced after three rounds of transplant and is dedicated to doing what she can to prepare to return at the earliest possible time. Her hope is to return to Hansa Center, where she had experienced great improvement, and to gain more strength to return for her second round of Human Embryonic Stem Cell Transplant (which she/we credit as having saved her life in 2012) as soon as her health and funding permit.

 

Dannie HMB 3.15.14

Cause for Celebration: out together!

Cause for Celebration: out together!

 

 

Current Financial Update and Medical Treatment Needs

 

With the help of LymeLight Foundation, Montgomery High School Santa Rosa, class of 1973, Harvest Christian Center of Redwood City, CA, Yoga of Los Altos, Crossroads Fitness  in San Mateo and over a hundred individual donors, Dannie’s and Ari’s first trips to India for HESC transplant and Dannie’s two trips to Hansa Center and her assessment at the Amen Clinics have been paid for!!! Ari’s second trip has been partially paid for with approximately $30,000 remaining and approximately $10,000 remaining debt from past medical treatment prior to HESC. Kate continues to work two full time jobs and continues to pay down these debts, while providing for Ari’s maintenance medical treatment 80% of which is not covered by insurance, and Dannie’s continuing care. She is beginning to save for a return trip to Hansa for Dannie,  followed by a second trip to India for HESC transplant, anticipating Dannie following Ari’s healing trajectory.

 

Additional factors impacting acquiring the necessary care for Dannie to obtain the healing Ari has, and for Ari to maintain his tremendous improvement,  are a move necessitated in early 2014 which was quite costly and proved to be 30% higher rent than prior, and the loss of two cars (Ari was run off the road totaling his car, but uninjured due to being in a safe Volvo!) and, just having been paid off three weeks ago, the other car’s transmission went out, costing more than the car is worth to replace.

 

(If you want additional information, please request by contacting:  helparianddannie@gmail.com)

For more updates see blog:  AriandDannie.com

 

 

 

In the dark of night- not for cowards

In Medical on April 14, 2014 at 3:58 am

This morning at five – rising pain. So far, this long night and dark morning, she is holding on at home… Thirteen visits to the emergency room in three weeks. Working all day while she fights back pain at an 8 with our new care giver, Maria, at her side… then when she can no longer… pain escalating to a 9 from the weariness of the day and all resources utilized… we are left to head to the hospital… and relief is not forthcoming~

Helping her to the car in the dark of night, trying to drive fast but careful- missing bumps, sharp starts and stops, that radiate pain through her body… parking in the drive way in front of the emergency department, flashers on, I run in and get a wheel chair, run back and carefully help Dannie out of the car, wheel her in and hope to be greeted by a warm face and caring, leave her there, park, run back, registration, questions, describing the indescribable, asking what doctor is there in hopes of receiving compassionate care, asking about the wait, sitting in the waiting room, rocking, breathing, massaging sometimes, sometimes touch isn’t good, listening to music, wiping her brow… and finally a bed… wheel her in, undress, get on the table and wait again…dim the lights, praying for compassion and help… praying for quick response… by now the pain has been at 9 – 9.5 for hours… Answering financial questions, nursing questions waiting for the doctor….  and not knowing if the response will be one of impatience or assistance, whether I will be able to breath and know that help is forthcoming or if I will have to carefully negotiate to get my daughter help. Doctor flips on the glaring light and decides. Dannie waits again… and relief is, at best partial— if back down to an 8 we go home for her to continue to white knuckle it and pray that it will not rise again. So grateful to Annegret and Janae for their answer to my calls, for their loving presence, for taking time from their busy lives. Most recently the hospital is ready for her to leave when her body is not yet relieved– discharge papers left on the bed, pain coming home with us.

Home, settle her into bed.. no settling. Nap a bit… get up, arrange medications, wait for Maria and I am off to work, carrying her in my heart all day long. Checking in with Ari who is facing challenges of another kind, longing to be along side him as well, cramming in phone calls at lunch to keep moving forward, obtaining care, pursuing new avenues…and the other stuff of life.

Thirteen times in three weeks.

I am praying for Dannie to have a peaceful day- she hasn’t had a pain free day since 2001. She doesn’t remember what a body at peace feels like or what it is like to plan a day and be able to realize it….To get out doors and to leave the house for other than a medical appointment or hospital visit has been  so rare.

Only faith and love have sustained her. Her world has been so small and it takes courage for someone to venture in to it, to be present, to love and not retreat….she craves a big extended family, dinners, people all around. She is, by nature, a social warm person, thriving on connection. Yet this disease takes the ability to initiate and sustain relationships  away, and leaves her subject to who will reach out and be here despite her inability to actively reciprocate as she would like. So many longings in her heart that she cannot fulfill. She has put her heart on the line over and again – To feel she is a part of something – that she belongs, that she is significant and not forgotten. To be brave enough to let others in, not knowing if anyone will stay, to believe that she is worthy. Sometimes she feels she is living in a pretend world, believing in things not seen, as the evidence is not there… Longing to  relate with human beings other than me, Ari and care providers, to know she matters—to have relationships with history, over time.

Her isolation makes each interaction tremendously significant.  Abandonment is a more searing pain than the physical  pain- to feel insignificant, dismissed, left behind, not important enough, replaced and  forgotten. To be recognized as a human being, with real feelings, real needs, for the things and experiences we all take for granted- that she is worthy, lovely, lovable. This she needs to live… For others speak hope, encouragement and care to her when she needs her hope enlivened or cannot hold it for herself- to offset the inhumanity of her isolation, her pain, her loss, and the trauma of medical treatment, compassion-fatigued and even mean spirited or cold providers. She is whimpering in her sleep next to me right now as I lay beside her, praying and visualizing health.

She has not had a pain-free day since she was ten-

Yet I believe today can be that day. Envisioning her on horseback, free. FREE. “

Please Remember her Spirit and Join Me in Seeing Dannie Healed.

Please Remember her Spirit and Join Me in Seeing Dannie Healed.

Together again for a moment..love and laughter

In Uncategorized on November 17, 2013 at 8:57 am
After months, the first time in our home together... and maybe the last time.

After months, the first time in our home together… and maybe the last time.

Thanks to Ari, we were  masked and able to go home today for the first time since Ari left for his India trip at the end of September. He returned October 29th, with nearly PERFECT spect scans of his beautiful, bright brain!!!! We are still celebrating the miraculous improvement and excited to see how he progresses in the next months.

While Ari was gone, Dannie spent the same month in Peninsula Hospital. We did not post this, as we wanted Ari to not worry while around the world getting stem cell transplant. Today is the very first time Dannie was able to get out of bed to venture home, and the first time we have all been together here since September.

Due to the mold in our home, Ari was not able to return home from India and Dannie was not able to discharge from the hospital home either. Ari has been staying with an amazing and welcoming family, pushing through his shyness and reserve and Dannie and I have been with another generous family who have opened their guest room to us.

We are continuing to look for a new place…. nothing yet.

More to come. Just wanted to share our latest family portrait!!! Smiles wide beneath the masks…

Gratitude for life and the love of family and friends.

Kate

Follow

Get every new post delivered to your Inbox.

Join 28 other followers