Today we celebrate another big milestone. Here we are, exactly 1 year post bone marrow transplant. We have 4 more years to go before we can officially consider Rina as "cancer-free". But along the way, it is important to celebrate as we continue this fight against childhood cancer.
Since Mother's Day last year, it seems that our lives were shaken with a magnitude of total devastation being given Rina's initial diagnosis of Leukemia. This day will forever be scribed in our minds hearing the news of her very rare and aggressive form of Leukemia, Acute Lymphoblast Leukemia - Philadelphia Chromosome.
Interweaving Rina's life-threatening illness was our only other child Patrick - where in just 2 weeks after initial diagnosis, was presented to us as Rina's potential bone marrow donor - her second chance in life. In just 4 months after 3 rounds of chemo, Rina's cancerous immune system was obliterated to be replaced by her brother Patrick's super bone marrow cells. Before transplant we were told that the 2 additional rounds of high dose chemo, 6 rounds of total body radiation, not to mention the transplant itself would leave her sterile. The thought of Rina not having the ability to feel the joy of life one day growing in her womb just as I had with her - was heartbreaking. But we knew our purpose. Our focused goal was to save her life.... And perhaps one day she may be able to save another child's life by adopting. But then again, who knows what will be possible for her 20 yrs from now?
And then came the harrowing 100 days of isolation post bone marrow transplant, with bated breath, hoping for a miracle that secondary infections or side effects would take over her fragile immune system. After countless ER visits due to fever, several unplanned hospital re-admissions due to fever, we can finally breath for a momentary sigh of relief. We couldn't have done this without you. It's as if we had been lifted up by the interlinked hands from family, strangers, community and God surrounded by all your love, prayers and healing energy. It is because of this that we write this letter of gratitude
We are grateful:
to Rady Children's Hospital & our amazing medical team whom we entrusted with our children's lives without thought or doubt knowing we were in the best care possible
to the nurses who cared for all us unconditionally 24/7 and providing comfort during our most vulnerable times. To see kids and families like ours everyday takes a heart of gold. And you are all angels on earth.
for our friends - some from lifetimes ago who came to visit, provide meals, send a card/care package, and to donate to our causes.
to social media, allowing us to reach our loved ones on news about Rina from afar. The daily encouragement from our friends lifted our spirits w your comments, "likes" or hearts each and every day
to SDG&E & the core team headed by my boss J uli a Mendoza - who coordinated support to our family resulting in breaking the record in # of donated vacations allowing me to take most of 2013 off work
To AEC who supported Keith providing him paid time off to be there when he was most needed
to 'Make A Wish & volunteers, for making Rina's wish to disney world and meet a dolphin up close
To SDBB & Blood donors who selflessly give whole blood, platelets contributing to the 23 total transfusions Rina endured since diagnosis
To Anka the Rady child psychologist for guiding us along the way. You helped keep our marriage strong and helped me understand what I was feeling shortly after Rina's diagnosis - that Post Traumatic Stress symptoms affect 99% of parents of childhood cancer patients
To RN Lisa and team of volunteers - her healing touch, essential oils, reika, and massage helped ground us from brings of insanity at the hospital
To Aaron cook and his team of acupuncturists who helped not just Rina but Keith and I as caregivers
To RN Tanya your art therapy reached Rina beyond levels Keith & I were able to reach
To our extended families for all your help with cooking, cleaning, watching Patrick, running errands
To other parents for their empathy and understanding, putting themselves in our shoes and doing what matters most - loving our children and their own families even more
To medical parents/friends for their advice, sense of community, humility and source of temporary escape from what happens in our child's hospital rooms
To loved ones we have lost to cancer, know that your spirit forever resonates within us and makes us even more determined to defeat cancer and find a cure
To the Rady Childrens volunteers, playroom, child life specialist, social workers, & parent liaisons staff- for helping us fill the void of a normal life outside of the hospital
To the foundations who support childhood cancer, know that through your purpose and mission, we are able to thrive as a family with childhood cancer
To ronald McDonald house and volunteers, for feeding us everyday, providing a temporary reprieve from life in our hospital "bubble"
To the Yunker family and their cul de sac who watched Floyd our geriatric 16 yr old dog for almost all of 2013.
To leukemia & lymphoma society & supporters - the daily chemo pill desatinib Rina still takes today is the targeted therapy that has helped save Rina's life to specifically fight against the Philadelphia chromosome
To Allie ohle and family for being just that person who just does knowing that our fault was knowing how to ask for help when we needed it
To our close knit circle of friends - u know who u r! For reaching out to us and showing us your love and support in so many different ways
For the ting family especially their daughter who selflessly gave up her birthday presents in lieu of fundraising for Rina's causes
For all our aunties & uncles - your wisdom and unwavering support through all these years has shined brighter than ever imagined
For our sisters because you understand us the most and for just being there
For our coworkers for taking a break from stresses of work to care, send a note, meal, donate vacation, and most importantly help us ease back into work life again
To Kinderhouse Montessori - for always remembering Rina and helping Patrick assimilate to school life outside of the hospital
To Park Village elementary staff, PTA, and friends for embracing Rina and our family into your community and always watching over her at school
For Ms Berg, Ms Bartlett and TK & Kindergarten class & families, for always keeping Rina in your thoughts and welcoming her back with open arms
For Ms Williams, for home schooling Rina and teaching her how to read!
To our parents, for their unwavering support and teaching us the foundation of becoming good parents as you were with us. We will forever be grateful
To my therapist - for listening to all my hopes and fears and helping me ease back into life after trauma and a yr living in survival mode
To Angry birds - for helping Patrick understand that he had super angry birds in his body to battle Rina's "bad piggies " and most of all, winning the battle
To our parish communities for the endless prayers, prayer blankets, and mass intentions
To medication (a love/hate relationship we have with you) - for keith and I though reluctant but necessary at the time, allow us better living through chemistry and for Rina sustaining her life in her fight against cancer
To God, you showed us your presence In so many ways, for always watching over us and helping us learn of our purposes in life
To our children - for teaching us that sometimes all that we give as parents can go beyond just us... That you can give life to one another
For Keith my husband, for being there for me in good times and bad and loving me all the way through life ever after.
For all of this and many more, we are so grateful. THANK you from the bottom of our hearts!
The Sy Family
Keith, Marianne, Rina, Patrick & Floyd