Updated posted by Lateefah Simon 5 days ago
We've been home for a little...
We've been home for a little over a month and we are slowly getting used to our new normal. Kevin is pretty tired these days but moving through his oodles of medications and IV infusions. His weekly blood work ups are looking good. This week he is set to get the infusion port in his chest taken out. This is yet another amazing millstone. He has has both a picc line and a hickman line during his aggressive treatments. Our biggest challenge on the health front will be to keep him free from infections for the next nine months.
Some days are great, others are terrifying. Nothing about post cord blood transplant living is simple. We are just taking one day at a time.
And as the Thanksgiving weekend comes to a close, I have found myself breathless when meditating on our blessings. Kevin's home oncologist agrees that Kevin's current health is nothing short of miraculous. The Kaiser and Seattle team attribute his wellness - in part to his community. Yup, I'd agree.
I am thankful for you all. You have literally clothed and fed us during the roughest weeks of treatment. You all have helped us purchase crazy amounts of meds and helped with our rent when we could not. You have made it possible for Lelah to live with us back in Oakalnd, ( many transplant families are forced to send their toddlers to live with family members because pre-school aged children bring home lots of viruses -which in our case would be deadly). During our final caregiver class in Seattle, I inquired about an entry date for Lelah into regular school and the answer was "not for year - at least". YIKES.
Your gifts have allowed us the amazing blessing of having a half time day care provider work within our home.
I am holding on to each precious moment knowing full well that these days are sacred. Thanking you all each and every moment of our days....
Updated posted by Lateefah Simon 28 days ago
Gratitude to our wonderful community. We...
Gratitude to our wonderful community. We have been back for two weeks and Kevin is feeling great. His lab work looks great. The donor stem cells are producing red and white cells a-plenty. Kevin goes to Kaiser 3x per week for blood work and exams.
His Graft Vs. Host Disease is in check with the help of high dose steroids - so you can image his energy level. :) We've got the crazy medication schedule and the home IV infusions down to a science. Crowds and busy places will be off limits for the next year, but we'll survive.
We are in love with our home. Our fabulous crew moved us in - so when we arrived, everything was set up. Our angel, Ayoka Turner, coordinated the best homecoming ever.
We are in love with our children and enjoying every second.
Always and forever in debt to you all for making our translation seamless.
Each day brings challenges but the blessings are abundant.
Updated posted by Lateefah Simon 1 month ago
Day 92! 100 days post transplant...
100 days post transplant is a major milestone for stem cell transplant patients. Kevin is almost there. His bone marrow biopsy came back last week showing no evidence of disease (NED). He is also 100% donor, meaning his old immune system has been completely wiped out and replaced with donor cells, pretty amazing stuff.
We will learn our departure date from Seattle soon. In the meantime we are super busy preparing to fly back to Oakland.
Kevin has mild Graft vs. Host Disease (GVH), a common complication after transplant, the medical team will be training us in identifying ongoing GVH symptoms, infection precautions and other details as we transition out of Seattle.
Coming to the great northwest was our only hope and we are so thankful to have been placed in such good hands. Fred Hutch is an amazing institution staffed by the best and brightest aggressive cancer crusaders in the world.
The last four months have been difficult as we’ve been away from our girls, our family and community. The treatment regimen was excruciating and often brought the both of us to our knees. During the most difficult days, we held on to love and the hope that we’d make it back home together. We were honored to have meet some amazing transplant warriors, some of whom didn’t make it back home. Our hearts ache deeply for their partners and children. We say prayers for grace and loving arms to comfort our large bereaved extended family members.
We are humbled beyond measure to be so close to our homecoming. The next 6-12 months will be no walk in the park. Kevin will be followed closely by a local team of oncologist in collaboration with the Seattle Cancer Care Alliance. He will be on heavy immunosuppressant medication for a number of months and will be extremely vulnerable to life threatening. We’ve been encouraged to ask for help with Lelah from time to time. We’ve also been told that Kevin’s visitors must have their flu shots and stay away from live virus vaccines
Prior to traveling to Seattle for treatment, we lived in Palo Alto. In our absence #TeamKevin has moved us into a lovely home in North Oakland. They’ve moved in furniture, unpacked our clothes, stocked our kitchen and even pruned the trees in the backyard! I’ve heard rumors that these amazing folks are planning a house warming party for us.
We will keep you all updated on the time and place, as we’d love to see, hug, and thank you all in person for your love and generosity.
Frankly, we wouldn’t be standing tall if not for your support. One of our Dr.’s reminded us ‘no one has enough resources to fight cancer’. She’s right. We are forever thankful. We couldn’t have asked for more blessings. Here is to the next year of healing and strength.
Kevin, Lateefah, Lelah and Aminah the Teenager
Created by Lateefah Simon on January 9, 2013
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