Weston Family Update

May 12, 2012

With each day, we savor this precious time together. The children are happy amidst the difficulties. Kevin has just completed his second chemotherapy cycle w/the new drug combination. This is his 27th chemo cycle in total. The first (new) treatment was given approximately five weeks ago and wreaked immense havoc on his body. He lost over 20 pounds and was admitted to the hospital again with sepsis and a neutropenic fever. After a week, he was eventually discharged. This was his ninth hospitalization since diagnosis. We are praying that this current cycle [taken earlier this week] won’t be as rough. He is deeply fatigued and doesn’t leave the bed much. The side affects of the drugs are many. He lacks appetite and his taste buds have taken a total shift. Meat is no longer our friend. The Knight Fellows @ Stanford bring by healthy, yummy meals each week. These brilliant folks are blessings beyond my imagination. These acts of kindness allow a few moments of solace for me.

Life as a caretaker, wife, and mom brings a host of challenges and blessings. The challenges are many but the most intense trials involve my sitting and watching someone that I love suffer. I can’t alleviate the suffering but I sing to him, cook great meals, and assure him that I will never ever leave his side. There in lies the blessing. We are so very fortunate to have the space and place to wade through this dark place together. Kevin and I are one. We read one another’s minds. Being together 24 hours a day, we are learning to honor both the uneventful moments as well as the painful and horrific seconds, minutes and hours that cancer brings. There are no words to articulate how devastating this illness truly is. Equally, there are no words that describe the heroic feats that Kevin champions every day. His clinical course has been off the charts. He rarely complains and sheds few tears. I complain and cry all day everyday.

The next few days and weeks will be critical for us. Kevin is scheduled for his next bone marrow aspiration later this week. The procedure is grossly painful – and yet, Kevin never grumbles. His hematologist places a ten inch needle in the small of his back and takes out a sample of bone marrow. There is also a sample of bone taken for study. Leukemia patients, both young and old have to endure this procedure throughout the course of their treatment. The bone marrow is then taken to our pathologist to determine the percentage of disease present in the sample. We are hoping and praying that this chemotherapy regimen has killed enough of the disease to allow Kevin to proceed to a life saving bone marrow transplant.

The transplant will take place in Seattle, at the Fred Hutchison Cancer Research Center. Seeing that Kevin doesn’t have a perfect donor match, Fred Hutchinson is the best choice for him. The Center has had wonderful successes in haplo identical and cord blood transplants. The thought of leaving all that we know and moving to Seattle is frightening – but whatever it takes. The blessing of medical insurance and the kind grace of both the Knight Fellowship and my employer has made all the difference. The costs associated with our treatment to date and the transplant are estimated at over two million dollars. I kid you not. Our out of pocket medical expenses to date (about $17,500] have been covered through the amazing donations from you all. There is no way to thank you all for your selflessness. We will pay it forward. I promise.

Onward!!!!

[written by Lateefah on 4.11.13]

Update on Kevin's status; a few months ago, Kevin had reached a remission allowing us to move forward with an experimental transplant process. On the day we were supposed to begin signing consents, tests came back showing that the PLL was present in the blood and bone marrow. Stanford canceled the transplant. We have spent the last few months preparing to receive transplant services at Fred Hutch in Seattle. They are fabulous and want to help Kevin, but his % must go down before they can take him. His cancer is no longer responding to the chemo treatments that he's been enduring over the past six months. We are on our third cocktail and it needs to work. This treatment is heavy. Kevin is extremely fatigued and has little appetite. He writes from his lap top and remains obsessed with daily news headlines. I watch in awe as he manages his non profit during cancer treatment. He is clear that he will be back - so I must believe this too.

Know that Kevin is now fighting with every ounce of strength to be here for his family and community. We've thrown our hands to the heavens hoping and praying that remission comes soon.

So, we are still living Palo Alto. We will go to Seattle when the disease levels decrease. As for now, we wait.

As for us, I cry a lot and Kevin reads lots of Walter Mosley. Lelah and Aminah both need Jesus.

We thank you for the food, for the donations, the 6k runs, the thoughts and prayers. They keep us going

An Update on Kevin’s Health and on the Weston-Simon Family Journey

[written by Lateefah]

Our family is gearing up for the next phase of our adventure. After a brief remission, living cancer cells were detected in Kevin’s lab work and given the super aggressive nature of this disease, he has been placed on an intensive chemo cocktail. Kevin has been on a non-stop chemo regimen since September 19th, with a couple of days off here and there. The hope is that the new 7 day a week cocktail will kill the diseased marrow – providing the opportunity to move forward with a stem cell/bone marrow transplant. While we have not found a perfect match, we now know that both of Kevin’s half-brothers are haplo matches, or half matches. Additionally, the doctors are exploring the possibility of doing a cord blood transplant.

Now, we wait for the optimal response from the chemo treatments and plan for the uncertainty of tomorrow. On March 4th, we travel to Seattle, Washington – to the Fred Hutchinson Cancer Research Center for an evaluation. Fred Hutch is the nation’s leader in alternative donor therapies for bone marrow transplants. If Kevin is accepted, we will ride out into the Seattle sunset on faith with a couple of suitcases in pursuit of a treatment to cure this cancer. The transplant process is estimated to be four to five months long.

Our “new normal” is at times heartbreaking. Our lives have changed forever. Lelah plays with her dad while he’s in an infusion chair each day. She points to meds and exclaims “for daddy”. Despite the difficulties, we count our blessings each day. Blessings have come from far and wide – but an honorable mention, Ayoka Turner, our dear friend has been a touchstone for us. Ayoka took off two months from her job to spark and lead a national campaign to increase the number of people of color in the national bone marrow registry. Not only did she put together over 20 donor drives, but she pulled together over one hundred volunteers to do everything from staff the drives, to planning our vows renewal. Our friends, family and community have been amazing. This community has prayed for, visited and fundraised for us. Without the love, we wouldn’t have had the resources or spirit to stay in this fight. Thanks will never be enough.